Image o book cover. Background composed of three horizontal stripes in orange, white and blue. The number “30,” in white, is on the orange stripe; the drawing is based on the
logo designed for the 30th anniversary of the AIPD. The number three represents a person in a wheelchair and the zero represents the globe. The white stripe has a shadowed
drawing in black and green, representing a group of disabled and normal persons, with their arms raised towards the words “30 Annos.” The blue stripe has the name of the book
printed in white letters: “30 anos do AIPD – Ano Internacional das Pessoas Deficientes, 1981-2011”.
AIPD - 30 years
International Year of Persons
with Disabilities (in
Portuguese,AIPD)
1981-2011
30 Years of the AIPD
International Year of Persons with
Disabilities 1981/2011
30 Years of AIPD
International Year for Persons with
Disabilities 1981/2011
São Paulo, 2011
Cataloging in publication
São Paulo (State). Secretariat of the Rights of Persons with Disabilities. Memorial da
Inclusão
30 years of AIPD: International Year of Persons with Disabilities 1981-2011. /
Secretary of the Rights of Persons with Disabilities, Memorial da Inclusão. – São Paulo:
Official Press of the State of São Paulo, 2011.
412 p.
ISBN 978-85-64047-01-3
1. Persons with Disabilities. 2. Rights of persons with disabilities. 3. Social inclusion.
CDD 362.4
Total or partial reproduction without the consent of the editors is prohibited
Copyright reserved and protected
(Law no 9.610, of 02.19.1998)
Legal deposit at National Library
(Law no 10.994, of 12.14.2004)
Printed in Brazil 2011
STATE SECRETARIAT OF THE RIGHTS OF PERSONS WITH DISABILITIES
Av. Auro Soares de Moura Andrade, 564
01156-001 Barra Funda São Paulo SP
Tel. (5511) 5212-3700
SUMMARY
PRESENTATION | Governor Geraldo Alckmin
30 years building democracy
INTRODUCTION | State Secretary Linamara Rizzo Battistella
Celebrating 30 years of AIPD: a story of struggles and achievement of rights
CHAPTER 1
Memories of the Fight: AIPD Protagonists
Stories of this history
Redemocratization, movement and preparation for the AIPD
Battle strategies
Integrated coexistence
Personal tragedy x social phenomenon
Battle-related paradigm
The International Year of Persons with Disabilities
Meetings, congresses, national coalition and entities
Meetings, seminars, state council and the Constitution of 1988
Global mobilization
The movement, the AIPD and its legacy of changes
Persons with disabilities and mobilization today
References
CHAPTER 2
From exclusion to full participation in society:
An international overview of the 30 years of the AIPD
Prior to the AIPD
From the 1940s to the 1960s: Technical cooperation of the UN
1970/1980: Decade of Rehabilitation
1974: First public demonstrations
1976: Proclamation of the AIPD
1977: Rights of deaf-blind persons
1979: Divulging of the AIPD symbol
1979: Theme of the AIPD
1979: Beginning of the AIPD movement
1980: First debate on the AIPD
1980: National AIPD Commission
1980: Brazilian Mission to the United Nations
1980: First city in Brazil to establish the AIPD
During the AIPD
1981: Architectural accessibility
1981: A historical ramp
1981: The AIPD in São Paulo
1981: MDPD in the AIPD
1981: The AIPD in Bauru
1981: The AIPD on TV
1981: The AIPD and humor
1981: Role of the media
1981: Media coverage of the AIPD´s activities
1981: The declining importance of the AIPD
After the AIPD
1982: Global Action Program
1983-1992: Decade of Persons with Disabilities
1985: Creation of the CEAPD
1988: People with Disabilities and the Federal Constitution of 1988
1992: International Day of Persons with Disabilities
1993: Standards on Equal Opportunities
2006: 25 years of AIPD
2006: Finally, the UN Convention
2007-2009: Brazil and the UN Convention
From exclusion (1981) to full participation in society (2011)
Bibliographical References
CHAPTER 3
The genesis of persons with disabilities; the heroic phase, the pioneering
associations, and the foremost leaders
No intermediaries or guardianship
Perverse political and economic scenario
Invisibility, knowledge and power
Pioneering associations and intrepid leaders
São Paulo Paraplegics Club "Clube dos Paraplégicos de São Paulo" (CPSP)
Brazilian Association of the Disabled - "Associação Brasileira de Deficientes
Físicos" (Abradef)
Christian Fraternity of the Sick and Disabled - "Fraternidade Cristã de Doentes e
Deficientes" (FCD)
The " heroic" phase of the movement
The “dinosaurs”
On the upper floor
Bibliographical References
CHAPTER 4
Making history: the social movement from the perspective of its leaders
Ana Rita de Paula
Canrobert de Freitas Caires
Geraldo Marcos Labarrère Nascimento
Gilberto Frachetta
Isaura Helena Pozzatti
José Roberto Amorim
Lilia Pinto Martins
Luiz Baggio Neto
Sandra Maria de Sá Brito Maciel
Wilson Akio Kyomen
CHAPTER 5
Sports and the inclusion of persons with disabilities in Brazil
Introduction
Some facts about the history of the movement
In the world
In Brazil
The leading actors in this history
The supporting actors in this history
Aldo Miccolis
A short chronology of Adapted Sports in Brazil
Bibliographical References
CHAPTER 6
Memorial: the paths of a person with disability
AUTHORS´ RESUMES
Ana Maria (Lia) Morales Crespo
Crismere Gadelha
Elza Ambrósio
Romeu Kazumi Sassaki
Suzana Lopes Salgado Ribeiro
Vanilton Senatore
BUILDING DEMOCRACY FOR 30
YEARS
The State Government, through the State Secretariat of the Rights of Persons
with Disabilities, is pleased to publish this book which tells the story of the social
movements for the protection of the rights of persons with disabilities. The story
comprises recollections and thoughts of the outstanding leaders of these movements. It
is very important to celebrate the “International Year of People with Disabilities” (AIPD),
established by the United Nations Organization, which is so meaningful for us, and to
celebrate the progress that has been made over the last few decades.
Since the mid 1950s, persons with disabilities have organized themselves to
demand public policies to secure their basic rights, as established by the UN in the
Universal Declaration of Human rights, in 1946.
In Brazil, these social movements began in São Paulo, in 1979, and spread
throughout the other regions of the country. The organization of the social movements
received an additional thrust two years later, due to the AIPD.
São Paulo was also the first state to establish a state council focused on
disability. The council was created by the then state governor Franco Montoro, in 1984.
The council was aligned with the decisions of the 1st State Seminar of Disabled
Persons, held in that same year. At the time, the participants also discussed the state´s
policy for that segment of the population.
Ever since then, civil society, the press, and government authorities have
contributed towards the strengthening of new initiatives, such as the multiplication of
specific councils throughout the country, the creation of secretariats at all levels of
government, inclusion policies in the fields of health, education, culture, and sports,
among other fields.
The Government of the State of São Paulo has extended its activities in this
respect.
. An example is the Luci Montoro Rehabilitation Network (Rede de
Reabilitação Lucy Montoro), School Paralympic Games (Paraolimpiada Escolar),
Inclusion Memorial (Memorial da Inclusão), accessibility to train and subway stations,
and the Technology and Innovation Meetings Persons with Disabilities.
The comments in this book are related to the 30 years of the AIPD. They have
a clear pedagogical objective, which is to celebrate battles and achievements that have
helped secure the rights of persons with disabilities. This book is an outstanding
acknowledgement of all that has already been achieved and an incentive for us to
establish increasingly ambitious goals. Enjoy the book.
Geraldo Alckmin
Governor of the State of São Paulo
CELEBRATING 30 YEARS OF the
AIPD:
A HISTORY OF THE BATTLES AND OF THE
RIGHTS ACHIEVED
Since 1957, the General Assembly of the United Nations Organization, has
urged member states to reflect on issues that need innovative public policies
implemented by governments and need to raise the awareness of global society.
In 1976, the UN proclaimed 1981 to be the International Year of Persons with
Disabilities (AIPD), establishing as the motto "Full Participation and Equality." The
objective was to put an action plan into practice on an international level, with emphasis
on equal opportunities, rehabilitation, and prevention of disabilities.
In one of the most inspiring cartoons1 alluding to the AIPD, we see a man in a
wheelchair in the corner of a room, in the spotlight. He is surrounded by many reporters
shoving microphones in his direction, and flashing cameras at him. A man sitting in the
opposite corner of the room waves his hand as if sending someone away, telling a child
who wants to sell him something: “Go away! Your year has already been celebrated!”
Like any other cartoon, this one is funny because it exaggerates, to the point of
ridicule, a reality we are all familiar with. This is why it is not surprising when in 1982,
the International Year of Mobilization for Sanctions against South Africa, disabled
persons were also waved away by the media. However, if common sense tells us that
media interest, and the interest of society in International Years only lasts - if at all - for
12 months, then why are we celebrating the 30th anniversary of the AIPD?
Historically, persons with disabilities were mostly ignored by societies and
governments. They were sidelined, treated in paternalistic manner, subject to being
stigmatized, discriminated and guarded by families, institutions, and professionals.
Persons with disabilities did not even have the right of speaking for themselves.
Inspired by the AIPD, thousands of persons with disabilities from all around the
world realized that they were citizens, and, as such, were entitled to citizens´ rights.
They felt encouraged to mobilize their peers to change the unfair reality they lived in.
1
. Published in Folhetim, a section of Folha de S. Paulo newspaper, on January 25, 1981, dedicated to the AIPD.
In Brazil, several organizations of persons with disabilities had already been
established to protect the interests of this population. However, It was only two years
before 1981 that, for the first time In history, persons with disabilities - encouraged by
the mobilization of Brazilian society clamoring for a return to democracy and fully
aware of the opportunities they would be offered by the AIPD –,began to get
organized on a national level. The objective was to achieve the recognition of their
status as a social segment and of their condition as citizens entitled to citizens´ rights.
Thus, in 1980, organized movements of persons with disabilities dedicated their
efforts to discuss strategies for the International Year of Persons with Disabilities.
The importance of the AIPD to mobilize persons with disabilities and to raise
the awareness of society and governments was already an item on the agenda of
conversations and preparatory meetings for the 1st National Meeting of the Entities of
the Disabled (Encontro Nacional de Entidades de Pessoas Deficientes). This
pioneering meeting was held in Brasília, from October 22 to October 25, 1980. The
meeting was attended by more than 500 people, most of them persons with
disabilities. During this historical event, the movement established its nati onal
strategies, created the National Coalition Pro Federation of Entities of the Disabled
(Coalizão Nacional Pró-Federação de Entidades de Pessoas Deficientes)2 (comprised
of 25 entities from 10 states in Brazil) and forwarded a manifesto to the President of
the Republic 3 complaining about the fact that there were no representatives of
persons with disabilities on the National Committeee for the International Year of
Persons with Disabilities. Other manifestations followed, after which the government
appointed José Gomes Blanco, representative of the National Coalition, as consultant
to the National Commission.
In São Paulo, stimulated by the AIPD and its motto, older associations joined
their efforts with those of new organizations being established all over Brazil. Thus
entities that had been active for years, such as the Brazilian Association of the
Physically Disabled
[Associação Brasileira de Deficientes Físicos (Abradef)],
Association to Assist the Physically Disabled [Associação de Assistência ao Deficiente
Físico (AADF)], Paraplegics Club of São Paulo [Clube dos Paraplégicos de São Paulo
(CPSP)], Association of the Visually Disabled and Friends [Associação de Deficientes
Visuais e Amigos (Adeva)], Christian Fraternity of the Sick and Disabled [Fraternidade
Cristã de Doentes e Deficientes (FCD)], Society of the Brazilian Visually Disabled
[Sociedade dos Deficientes Visuais do Brasil (Sodevibra)] and the Association for the
Integration of the Disabled [Associação de Integração do Deficiente (Aide)] began to
partner with recently established organizations, such as the Center for the Integration of
the Disabled [Núcleo de Integração de Deficientes (NID)], Movement for the Rights of
the Disabled [Movimento pelos Direitos das Pessoas Deficientes (MDPD)], Association
2
. Later on, the Coalizão disbanded, and national organizations were created. These organizations focused on the
movement and on different kinds of disabilities. However, this did not weaken the movement. Quite the contrary - this led
to a broader exposure of the heterogeneous nature of the movement and the progress of specific claims, which
strengthened the ties between the organizations. Thus, the organizations continued their common battle for the rights of
the disabled.
3
. João Batista de Oliveira Figueiredo was the 30th president of Brazil. His term in office ran from 1979 to 1985.
of the Brazilian Paraplegics and Physically Disabled [Associação dos Paraplégicos e
Deficientes Físicos do Brasil (APDFB)] and the Association of Paraplegics of Taubaté
[Associação de Paraplégicos de Taubaté (Aparte)].
On December 12, 1980, the disabled persons´ organizations from São Paulo
held the first launching event of the International Year of Persons with Disabilities. The
event was held in the city of Ourinhos, in the State of São Paulo.
The official opening ceremony of the AIPD was held at the City Council of São
Paulo on March 14, 1981, at the initiative of the Movement for the Rights of the
Disabled, with the support of several organizations from the State of São Paulo.
In Brazil, the most significant event in 1981 was the 1st Brazilian Congress of
the National Coalition. The main objective of the event, held in the city of Recife, was to
clamor for changes in rehabilitation services and demand the removal of environmental
and social barriers that prevented (and still do) the inclusion of persons with disabilities.
But, like in most countries around the world, the International Year in Brazil comprised
countless meetings, seminars, symposiums, round tables and lectures, news, interviews
and articles in the media..
No opportunity was ignored to expand the mobilization of persons with
disabilities and to clarify society on their demands. The unheard-of exposure provided by
the AIPD helped lead society to become aware of the movement’s early demands and
government to initiate conversations on public policies. Above all, this exposure helped
raise the awareness of persons with disabilities and led to the multiplication of
representative organizations.
Discussions on the objectives of the AIPD were useful to help activists create a
new discourse and provide the grounds for the recently-created Brazilian movement’s
demands. It became very clear right from the start that the building of citizenship
included the building of a new identity. This required adopting new terms to substitute
currently used ones, such as " defective," "invalids," and " retarded," which were
demeaning and reduced individuals to their disabilities. At the inspiration of the
International Year, Brazilian activists, in the early years of the movement, adopted the
term " persons with disabilities" to affirm and demand that the person, the human being,
comes first. Thus, a new relationship was begun with society.
The International Year also helped society understand that, unlike prevailing
myths, persons with physical, intellectual, visual, hearing or multiple disabilities are
challenged by different barriers, of a distinct nature and these barriers have to be
overcome in different ways.
Based on discussions fueled by the AIPD, disabilities were no longer viewed as
a personal tragedy and began to be viewed as a condition that exists in the relationship
between the environment and disabled persons. Society realized that it had the
responsibility of eliminating all cultural, physical, or social barriers that prevent persons
with disabilities from having access to all the systems available to citizens in general.
Thanks to the encouragement provided by the International Year, by its motto
"Full Participation and Equality, and by the recommendations of the Global Action
Program for Persons with Disabilities approved by the United Nations in 1982, and
based on the discussions stirred by the AIPD, the disabled persons´ movement was able
to move the focus of the issues related to them, previously historically linked to religion
or medicine, to focus on the field of Social Sciences and Human Rights. Thus, AIPD
established the base for building an inclusive society which benefits all of its citizens
when persons with disabilities have the opportunity of leading their own development
process.
Aware of this fact, the General Assembly of the United Nations adopted the
following resolution in 2010 “Realizing the Millennium Development Goals for Persons
with Disabilities for 2015 and beyond.” This resolution takes into consideration the
importance and the scope of the Convention on the Rights of Persons with Disabilities to
promote the inclusion of disabilities into the Millennium Goals and thus encourage
disabled persons to take a pro-active role in development-related processes. In
addition, an appeal was made to organize High-Level Meeting on disabilities and
development in 2012.
The theme of the 2011 International Day of Persons with Disabilities is "
Together for a better world for all: including persons with disabilities in development."
This theme reinforces the certainty that the Millennium Goals will eradicate extreme
poverty and hunger, promote gender equality, eradicate diseases that kill millions of
people, reduce infant mortality, improve mother health, achieve basic education on
universal level and foster new bases for the sustainable development of people will not
be achieved unless persons with disabilities are fully and actually included and are able
to participate in all the steps of the process.
In addition, we who come from this continent have the commitment to foster
respect for human rights and expand public policies for persons with disabilities until
2016, the last year of the Decade of the Americas for the Rights and Dignity of Persons
with Disabilities. The motto of the Decade of the Americas is "Equality, Dignity, and
Participation," declared by the General Assembly of the Organization of American
States (AOS).
Therefore, the purpose of celebrating the 30th anniversary of the International
Year of Persons with Disabilities is not only to honor pioneering leaders and redeem
pioneering histories, no matter how important this is. Celebrating the 30th anniversary of
the AIPD is an opportunity to provide a historical perspective so that incoming activists
can prepare themselves for the upcoming challenges. The celebration points towards
the future.
This book, which celebrates the 30 years of the AIPD, contains a chapter on
"Memories of the Battle: Protagonists of the AIPD,” based on interviews with leading
activities. The interviews were collected under the Oral History Project of the Memorial
da Inclusão (Inclusion memorial) and Crismere Gadelha, Suzana Ribeiro and Lia Crespo
report on the history of the disabled persons´ movement in Brazil.
In the chapter “From exclusion to full participation in society: an international
overview of the 30 years of the AIPD,” Romeu Sassaki gives us an overview of the most
important facts and moments that highlighted the history of persons with disabilities
before, during and after the International Year and around the world.
In the chapter “The origin of the movement of persons with disabilities in Brazil:
the heroic phase, pioneering organizations and outstanding leaders," Lia Crespo
describes the initial phase of the movement and pays homage to some of the
movement’s leaders.
The chapter “Making history: the social movement from the perspective of its
leaders" contains 10 reports, permeated with emotions and humor. The chapter
comprises six interviews conducted under the Oral History project organized by the
Memorial da Inclusão, and four reports originally prepared for Lia Crespo´s doctorate
thesis, "From invisibility to the construction of one's own citizenship: the hurdles,
strategies and conquests of the social movement of persons with disabilities in Brazil
through the life histories of their leaders" (“Da invisibilidade à construção da própria
cidadania: Os obstáculos, as estratégias e as conquistas do movimento social das
pessoas com disabiliddes no Brasil, através das histórias de vida de seus líderes”).
The chapter “Sports in the inclusion of persons with disabilities in Brazil",
written by Vanilton Senatore, describes the history of parasports in Brazil and its
importance for the inclusion of persons with disabilities.
In the chapter “Memorial da Inclusão: The paths of persons with disabilities,"
Elza Ambrósio, Crismere Gadelha and Lia Crespo describe how the exhibition organized
by this organization was created, as well as the major documents that comprise this
exhibition.
We hope that - through the information and comments provided by the authors
of the chapters -, of reports by activists, of documents and photographs contained in this
book – our readers will be able to glimpse what these pioneering leaders did in the social
and political movement of persons with disabilities and how significant they made this
journey which began 30 years ago.
Linamara Rizzo Battistella
State Secretary of the Rights of Persons with Disabilities
Image. Letter for the Eighties.
Rehabilitation International. Letter for the Eighties.
“CHARTER FOR THE EIGHTIES was approved by the General Assembly of Rehabilitation International, at the 14 th World Congress held in Winnipeg, Canada in June 1980.
The letter is presented to the world as a major contribution to the INTERNATIONAL YEAR OF PERSONS WITH DISABILITIES.
CHARTER FOR THE 80S
DECLARATION
More than Five hundred million people are disabled in the world today. In every country at least one person in ten is disabled by
physical, mental or sensory impairment. They share the rights of all humanity to grow and learn, to work and create, to love and be
loved, but they live in societies that have not yet learned to fully protect those rights for their citizens with disabilities. They are too
often denied the opportunities and responsibilities which would be theirs. More than three hundred and fifty million people with
disabilities live without the help they need to enjoy a full life. They live in every nation, in every p
Art of the world, but by far the greatest number live in areas at early stages of economic and social development. Here poverty joins
with impairment to poison the hopes and diminish the lives of children, of adults and of families.
An estimated twenty-five percent of the members of any community are prevented by the existence of disability from the full
expression of their capacities. This includes not only people who are disabled but also their families and others who assist and support
them. Any society which fails to respond effectively to these problems accepts not only a huge loss of human resources but also a
cruel waste of human potential.
Throughout history, humanity has erected barriers both physical and social which exclude from full participation in its communities
those judged to be different because of physical or mental variation. Buildings and transportation are mostly inaccessible to many
people with disabilities. Information and beauty do not reach those whose sights or hearing or comprehension is impaired. The
warmth of human association is withheld from children and adults whose physical or mental capacities are different from those of the
majority. Education, productive employment, public service, recreation and other human activities are denied to many or permitted
only in segregation. For people with the most severe disabilities, who are unlikely ever to be capable of independent activity, there is
often total neglect or insufficient effort to assist their personal development and improve the quality of their lives.
The knowledge and skills now exist to enable each country to remove the barriers which exclude people with disabilities from the life
of its communities. It is possible for every nation to open all of its institutions and systems to all of its people. What is too often
lacking is the political will to proclaim and translate into action the policies necessary to bring this about. A nation failing to respond
to this challenge fails to realize its true worth.
Poverty and war not only cause disability but also affect the availability of resources for its prevention and rehabilitation. The aims of
this Charter require for their fulfillment, therefore, a more equitable distribution of the world´s resources and relations between nations
that are based on reason and cooperation.
In this decade it must be the goal of all nations to reduce the incidence of disability and to evolve societies which will respect the
rights of persons with disabilities and welcome their full participation. For those purposes this Charter for the 1980s is promulgated.
Its aims, each of equal importance and priority, can be achieved only where there is a basic modification of each society`s attitude
towards disability and of its response to the problems of handicapped people. The aims are: To launch in each nation a program to
prevent as many impairments as possible, and to ensure that the necessary preventive services reach every family and every person.
To make certain that every person with a disability, and every family, which includes a member with disability receives whatever
rehabilitation services and other support and assistance may be needed, to reduce the handicapping effects of disability and to make
possible for each person a full life and a constructive role in society.
To take all necessary steps to ensure the fullest possible integration and equal participation by people with disabilities in all aspects of
the life of their communities.
To disseminate information about people with disabilities and their potential, and about disability, its prevention and treatment, so as
to increase public knowledge and awareness of those problems and of their importance to society.
Each country is urged to prepare a comprehensive national plan for the achievement of these aims in the light of the principles
enunciated in this Charter and of its own circumstances. The plan should involve all major sectors of national life and be a component
of high priority in any programs for national development; it should provide for the full participation of people with disabilities in
such programs.
It is essential that each country should have within its government an office or an individual of senior rank, directly responsible to the
Head of State or Government, as is appropriate, to direct the preparation of the national plan and to coordinate its implementation.
This office or person should be assisted by a national advisory board including representatives of all relevant government departments,
organizations of people with disabilities, and voluntary and professional groups.
The Charter for the 80s is a statement of consensus about measures to enable humanity to protect and nourish the rights and
responsibilities of every person, those who are disabled and those who are not.
The Charter has been approved by the Assembly of Rehabilitation International following its consideration by the 14 th World Congress
in Winnipeg, Manitoba, Canada, June 26, 1980, and is presented to the world as a major contribution to the International Year of
Disabled Persons.
Collaboration: Official Press of the State of São Paulo - Imprensa Oficial do Estado S/S – IMESP.
Subtitles: Digital files of the Memorial da Inclusão. Donation: Cedipod.
CHAPTER
1
Memories of the Battle:
Protagonists of the AIPD
Crismere Gadelha, Lia Crespo and Suzana Ribeiro
In mid 2009 inspired by the motto " Nothing about us without us," we decided to
look for the more than 700 documents that nowadays comprise the Memorial da
Inclusão: Os caminhos das pessoas com deficiências4 (Inclusion Memorial: the journey
of the disabled) exhibition. We collected the documents from the protagonists of the
movement of persons with disabilities.
While the material was being collected, copied and returned to the guardians,
we were so concentrated on our tasks of making the exhibition materialize that we did
not immediately notice that we were sowing seeds on fertile land. Little by little, we
became involved in narrations of tough battles to be granted rights, of fights between
friends followed by relationships being resumed, events filled with picturesque stories,
memorable camp-outs and unforgettable trips. Many activists, family members and
representatives of institutions voiced their desire to donate the documents that had been
so carefully guarded during more than 30 years. Their objective was to create a
collection of historical documents that would be made available for consultations to
researchers and other people interested in the social movement of persons with
disabilities.
The Exhibition at the Memorial da Inclusão was officially opened on December
3, 2009, during the Seminar “Memories, Conquests and the Future of the Social
Movement of the Disabled in Brazil"(Memórias, Conquistas e o Futuro do
Movimento Social das Pessoas com Deficiências no Brasil”). On that day, many of
the people who were being honored that day shared precious memories with the
seminar participants. Upon concluding this first phase (because this work is open, and
constantly evolving) we realized that the exhibition Memorial da
4
. www.memorialdainclusao.sp.gov.br.
Image. Color photographs of the 23 persons who were interviewed and are referred to in this chapter. The
photographs, approximately 2 by 2, are displayed inside an oval-shaped frame in orange; the watermark is
the logo of the AIPD. Below the image is the subtitle with the names of the persons in the photographs:
Adelino Ozores Neto Segundo; Ana Maria Morales Crespo (Lia Crespo); Antonio Carlos Munhoz (Tuca
Munhoz); Aparecida Akiko Fukai; Célia Camargo Leão; Celso Zoppi; Cíntia de Souza Clausell; Cláudia
Marques Maximino; Francisco Núncio Serignoni (Chico Pirata); Gonçalo Aparecido Pinto Borges; Ilda
Mitico Saito; Iracema Alves Lazari; João Batista Cintra Ribas; Leila Bernaba Jorge Klas; Linamara Rizzo
Battistella; Márcia Cruz; Maria Amélia Vampre Xavier; Maria de Lourdes Ribeiro; Marisa do Nascimento
Paro; Marta de Almeida Machado; Nilza Lourdes da Silva; Suely Harumi Satow and Wanderley Ferreira
dos Santos.
Inclusão is a multi-faced history, in the manner of a patchwork quilt, where letters,
reports, posters, photographs, magazines, and videos are entwined with memories and
feelings that the referred documents brought to the surface. At that time, it became very
clear that there was an urgent need to create the Oral History Project and the Memórias
da Inclusão data base.
These projects began to materialize in early 20105. During the first phase of the
Oral History Project, we interviewed the people who had taken active part in the
movement since its beginning, and especially those who had taken an active part in
1981, during the International Year of Persons with Disabilities (AIPD). The interviews
focused strongly on dialogues with collaborators, considering their remembrances and
subjectivities of each individual. The construction of narratives related to personal
experiences and group experiences took place within a process of intervention and
mediation. This construction of narratives and experiences sought to describe a
common identity, essentially highlighted by invisibility and the quest for inclusion.
To produce these records, we prepared a script with questions on childhood,
educational background, activism in the movement, no activism and activities during the
AIPD, experiences in relation to the issue of disability and perception in relation to the
achievements and the pathways taken. In spite of the existence of this initial script, the
prevailing attitude during the interview was the respect for the way the respondents dealt
with the suggested topics and the importance they attributed to them. Thus, the proposal
was to unveil relevant themes in the different life stories, without the need of touching
upon pre-established historical facts (MEIHY, 2005 and RIBEIRO, 2007). In this chapter,
we have included a tiny part of the treasures captured by the Memorial da Inclusão.
Stories of this history
Most of the respondents and their families were strongly affected by the fact
that the professionals who looked after them were barely knowledgeable and almost
totally unprepared to lead with their disabilities and specific needs. In addition to these
difficulties, families had to deal with contradictory feelings. On one hand, they had the
intuitive discretion to deal with a disabled child, the desire to stimulate the child’s
development to secure its future. On the other hand, the families were full of doubts,
guilty feelings, shame, and fear arising from their lack of knowledge and information on
the causes and meanings of disabilities:
My son was born with Down ’s syndrome, the existence of an extra 21 chromosome. At
that moment, I refused to accept this... I had always been very independent. I could
deal with sidewalks very well, even though I had to wear an orthopedic appliance. I
don’t deny the fact that I partied a lot and dated a lot. “What’s the baby’s problem?” At
that time, the term used was ´mongoloid´, so I said, " The baby is mongoloid." The
hospital staff member answered: “You’re in the wrong place, because here at this
hospital we only take care of the mentally disabled. I don’t know what mongoloid
5
. The Memorial da Inclusão staff conducted 32 interviews in 2010, which are now part of the Icnlusion Memories
Database (Banco de Memórias da Inclusão). The interviews were conducted by Suzana Lopes Salgado Ribeiro. The
Banco de Memórias data base also stored 6 other interviews conducted by Ana Maria Morales Crespo, also known as Lia
Crespo. These interviews were conducted when Lia was doing research for her doctorate degree in Social History at the
University of São Paulo. Lia Crespo donated her interviews to the Memorial da Inclusão project.
means.” I asked her: “So, if you don’t know what this means, isn’t there a doctor who
can tell me where to go?” (...) That was when my battle started, because I never
forgave the fact that the public hospital was not staffed by trained people who could talk
to me and give me an answer. The woman insisted: “Is he crazy?” I answered: “No, as
far as I know, no. He’s not crazy. He has mongolism and needs to receive treatment, I
was told: " But we don’t know how to treat him
!” And Heitor was laughing, playing with his pacifier, with his teddy bear and with a toy giraffe.
(Iracema Alves Lazzari)
A doctor put Ricardo down to take an X-ray, and this is what he told me: “Nothing works in this
boy’s head. Nothing! He has the head of an old man.” (...) I wanted to run away with Ricardo to a
place where nobody knew us. That was the first time I had felt such anguish. I spent the night
tossing and turning. (...) When we founded the Apae de São Paulo, in 1960, the so-called medical
model was in vogue; so mothers and fathers were totally ignored. For example, the physicians in
those times (the ones who were not connected to Apae or to the Catholic University/ PUC,
because those physicians were different) would say: “How many children do you have?” If the
father answered, " I have three," the physician would say: Well, forget this one here, because he
will never amount to anything. He will be like a plant. Put him away - He will be like a plant.
Institutionalize him, in a nursing home and forget that he exists." As if something like that were
possible for a mother or father to do. The parents panicked. The rich families, the plantation
owners, would hide the child born with a disability. They would send the child away to the distant
town of São Carlos, and find someone to take care of the disabled child. The other siblings very
often had no idea that a disabled child had been born. All of this used to happen! I mean, people
were ashamed. It was horrible to have a disabled child. Because the belief was that some kind of
evil had been committed, it was a sign that something was wrong (...)That was when the Apae
created the Moment of News Giving Project (Projeto Momento da Notícia). (Maria Amélia
Vampré)
Up to the when I was 17 or 18 years old, I sensed a lot of prejudice regarding my disability. I
understand why. Until I was forty some years old I had to wear an orthopedic appliance (orthesis).
It was a heavy appliance that had not been really updated. In this sense, ortheses were not as
developed as prostheses.) The appliance hurt and injured me. Because I had to use the
orthopedic appliance I spent my childhood and adolescence listening to my family say " My son
got rid of the wheelchair," as if the wheelchair were some horrible object. This prejudiced image
of wheelchair is something that still persists today. People see a wheelchair as if it were a prison!
It’s actually the opposite! Wheelchair means freedom! I only got a wheelchair after I was forty
years old. (João Baptista Cintra Ribas)
I remember my childhood. We used to live on the tenth floor of a building located on São João
Avenue. My birth was a shock; It was astonishing, because my sister was perfectly normal. I am
the second daughter and I was born without arms and legs. MY mother used to say that she
wanted to throw me out the window and then throw herself out. (...) I was sent to the AACD
(Associação de Assistência à Criança Defeituosa). My mother started my rehabilitation when I
was 8 months old, because when I was born my feet were stuck one to the other. She had the
bright idea of asking the doctor to separate my feet so that I could use prostheses. The doctors
would tell her: No way! You’re crazy. Your daughter will never be able to walk." At that time,
nobody knew the survival expectancy of victims of thalidomide. When I was born, the doctor
asked " What happened?” So they started asking my mother some questions. My mother told
them that she had severe morning sickness. "The doctor prescribed thalidomide and I took ten
pills.” My mother never felt morning sickness when she was expecting my older sibling; she only
felt sick when she was expecting me. (Cláudia Marques Maximino)
I remember that I didn’t want to study because I didn’t have enough coordination in my hand to be
able to write. One day, my mother had a nervous fit and threw all my books upwards. " If you
don’t want to make anything out of your life then don’t go to school anymore, just stay in a
corner..” I cried a lot, picked up my books and notebooks and said " No. I want to study”(...) I
graduated from high school and enrolled in the Pontifical Catholic University/PUC in 1972.
Those were tough times! (...) I read all the texts on Philosophy and I read a lot of literature.
Everybody was astonished. "Wow this girl reads and does a lot of other things!” Six months later
I started getting severe headaches that just wouldn’t go away,if I made any extra effort, it felt
as if the skull would shatter my brain. (...) My mother and I went to see a doctor. The
doctor asked her "Does your daughter do dangerous things, like climbing up on the
roof? Does she leave her clothes lying around the house?” And the doctor kept on
asking me these questions. So then my mother said, "Wait a minute. You have the
wrong impression. A `mentally retarded` person doesn’t enter the sophomore year of
Philosophy at PUC, in São Paulo.” (Suely Harumi Satow)
Many of the respondents have maintained a permanent relationship with
rehabilitation centers where they spent their childhood and adolescent years.
Established in the 1920s-1930s, and having reached their peak in the 1960s and 1970s,
rehabilitation centers are still active. These institutions are based on rigid discipline and
are based on services according to the type of disability (most of the time these services
disregard individual needs and desires). They are firmly grounded on " the medical
model of disability and on a scientific discourse which is viewed as the absolute truth,
which disqualifies all other possibilities of understanding and all other knowledge viewed
as being unscientific” (NALLIN, 1994, p.39)6. The respondents realized that physical
rehabilitation and the architectural comfort of organizations providing assistance to
persons with disabilities did not guarantee inclusion. When stepping outside the
rehabilitation centers, equipped with accessible premises, persons with disabilities were
faced with a totally inaccessible and prejudiced social context. Even though some
people were aware of the issue of disability was being addressed in other countries,
under a paradigm of integration, nobody questioned the fact that the responsibility to
change this reality was entirely up to the individual:
Everything was accessible at the AACD: the ramp, the adapted bed, wheelchair,
spacious bathroom, bath chair. You are fairly independent in this kind of environment.
And then you go home and have to deal with stairs, you can’t go up to your bedroom
you have to sleep in the living room, the wheelchair doesn´t fit in the bathroom, there
are steps all over the premises, there’s no ramp, people don’t know how to carry you,
nobody trained the family before you came home. “Hey, wait a minute, we have to do
something about this! We’re going to have to change this reality. People will have to
learn how to deal with me and I will have to learn how to deal with the environments!”
But in 1976, the disabled persons´ movement did not exist in Brazil. Our actions were
6
. CRESPO, Ana Maria Morales. Da invisibilidade à construção da própria cidadania. Os obstáculos, as estratégias e as
conquistas do movimento social das pessoas com deficiências no Brasil, através das histórias de vida de seus líderes.
Doctorate thesis, FFLCH/USP, 2009.
still very individual. The only associations existing at that time were the AACD and the
Apae. But they didn’t fight for the rights of the disabled, all they focused on was the
treatment so that the patient could go back home. But they never bothered to find out
whether the person would be productive. When I left the AACD, in 1976, persons with
disability were totally excluded. But we knew about the reality of persons with disabilities
who came from other parts of the world, because of the personal contact we had with
people who came to the AACD on exchange programs. People came from Chile,
Colombia, Peru, Portugal, and Spain. We heard of movements in the United States,
because of the Vietnam War and other wars that were taking place. In the United
States, persons with disabilities began to clamor for their rights in 1975. This generated
an impact in Brazil. Our movement began in 1980. I had been out of the hospital for four
years. (Adelino Ozores)
At the AACD, we had contact with other paraplegics. They always said: “This place is
wonderful - no stairs, and the bathroom is adapted to our needs. The centers are very good
to us here, but in the outside world, they have no representativeness. The rehabilitation
centers don’t change the world outside.” I increased my contacts. I remember Akemi, a
Japanese woman who lived at the AACD. She introduced me to the MDPD. She said:
“These people started a movement that is clamoring for our rights, they’re battling to get
things done. You will see what the real world is like when you leave this place. No adapted
buses, probably no adapted bathroom at the school you will be enrolled in. No adaptations.
You will see that everything is different. If these things don’t change, nothing else will
change.” This was in 1980. (Wanderley Ferreira dos Santos)
I went through surgery at the HC teaching hospital (Clinics Hospital of the University of São
Paulo). But rehabilitation and preparation of orthopedic braces - this was all done at the
AACD, where I learned how to swim. But my relationship with other disabled children was a
distant one, as if though the disability kept us apart rather than closer. It was not a pleasant
relationship. I don’t think I viewed my own disability as something good. I didn’t look at it
positively. (Tuca Munhoz)
Redemocratization, movement and preparation
for the AIPD
The “heroic phase” of the movement of persons with disabilities coincides with
the presidential term in office of General João Batista Figueiredo (1979-1985). During his
government, the political repression implemented during the government of General
Ernesto Geisel (1974-1979) was lifted, and the Amnesty Law7 was enacted. On April 30,
1981, the so-called Riocentro bombing occurred, a frustrated attempt that took place
during a show to celebrate Labor Day. Persons with disabilities began to clamor for their
rights in this context, as did other minorities, such as the Negroes, women,
homosexuals, and landless peasants (GOHN, 1997 e 2003).
The social invisibility of these persons was one of the characteristics of the
7
. The common name given to Law n° 6.683, promulgated on August 28, 1979, thanks to the Amnesty Campaign
organized by Brazilian society.
period during which the military dictatorship ruled the country. The media avoided
publishing images of persons with disabilities and the institutions that provided
assistance to the disabled persons represented them at all levels.
Thus, even though society was opening up to democracy, the military regime kept a
close watch on all the citizens that stood out because of their non-conformism with the status
quo. Evidence of this attitude is the fact that the Memorial da Inclusão, when researching the files
8
stored in the State Public Archives, discovered that Cândido Pinto de Melo (1947-2002) an
activist and member of the Movement for the Rights of the Disabled (MDPD) had been under
9
surveillance of the Dops , the federal government’s police authorities. The archive also contains
records of the activities carried out by Isaura Helena Pozzatti and Maria de Lourdes Guarda
(1928-1996), both of whom were coordinators of the Christian Fraternity of the Disabled
organization at that time. According to the referred documents, and, incredible but true, police
authorities covertly took part in the first public protest march organized by the movement in 1981,
in front of the Teatro Municipal concert hall in downtown São Paulo. During the protest march,
the policemen, in disguise, collected the pamphlets distributed by the activists and attached them
to their reports on the event. Therefore, the fears of activists fighting for the rights of
persons with disabilities should not be judged as paranoia or fantasy:
I recall that in 1979 or maybe it was in 1980, the coordinators of the FCD held a meeting at
the Igreja do Carmo church, on Rua Monsenhor Passalacqua street. At that time, we had to
ask the DOPS for permission to hold such meetings. That’s right, we had to ask the DOPS
for permission, we had to send a list of the participants who would be at the meeting, and tell
the authorities the reason for the meeting! One day, we were in Parelheiros, I think it was a
training program or something of this kind, and we started to learn the words to the song
"Caminhando (Pra não dizer que não falei das flores)" written by Geraldo Vandré. One of the
participants was really scared and said: “No! We shouldn’t sing this song because what if the
DOPS shows up here? All the disabled persons will be arrested!” There was a lot of
repression, yes! Good Lord! (Ilda Mitico Saito)
The MDPD was known for preparing laws. Cândido Pinto de Melo, who had been a student
activist, was one of the members. He was a person with political ideas. At that student
meeting at a small farm in Ibiúna10, the army surrounded the participants and Cândido was
arrested. Cândido would tell me about this episode. This story is reported in the book written
by Zuenir Ventura, called “1968: o ano que não acabou”. Cândido would sometimes tell
these stories. I realized that he was a strong leader with a lot of knowledge - his personality
8
. Cândido became a paraplegic on April 28, 1969, at the age of 22, when an attempt was made on his life by the military
regime. At that time, he was the president of the União dos Estudantes de Pernambuco (UEP) students´ union, which
had been closed down by the military dictatorship.
9
. Departamento de Ordem Política e Social (Dops - Department of Social and Political Order), created in 1924, was the
federal government´s police department. It was especially active during the Estado Novo dictatorship regime, and, later
on, during the Military Regime of 1964. The DOPS´ objective was to control and repress political and social movements
that were against the regime in power in those times.
10
. Approximately 10 thousand students participating in the 30th Congress of the UNE, the national university student´s
union were arrested by police authorities of the Força Pública and by policemen of the Dops. The students were
participating in a clandestine meeting organized by the UNE, and held at a farm near the town of Ibiúna, in the south of
the State of São Paulo. Published in Folha de S. Paulo newspaper, on Sunday, October
13, 1968,
(http://almanaque.folha.uol.com.br/brasil_13out1968.htm).
showed these characteristics. Cândido was the top leader of all those events. He knew how
to talk to politicians on an equal basis. People recognized him as a leader. (Wanderley
Ferreira dos Santos)
Brazil was at the peak of a revolutionary period in 1975, when the Declaration of Rights and
the worldwide movement began. No matter how close our ties were to other countries, the
internal repercussions on many actions on a global level were very insignificant. The
government feared organized community movements. The government did not view
neighborhood associations or student councils favorably. When a country is under political
repression, such issues become diluted. I think at one point we unlearned how to participate,
we unlearned how to look at each other. The feeling of alterity weakens when there are no
individual freedoms. This was not ostensible or explicit. Nobody was being arrested
anymore in 1975. The student movement was going back to normal in a certain sense, but
there was still a lot of fear, that’s a fact. 1981 was the beginning of something bigger than
the movement for the rights of persons with disabilities. It was a movement that brought
society together. I think all of this was important for families and associations working with
intellectual disabilities and I think it was an important moment for this group of people.
Although issues related to physical disabilities and even visual ones were reasonably
acceptable to society, but intellectual disabilities were still restricted to aid organizations.
(Linamara Rizzo Battistella)
Many groups joined efforts and began to conduct joint activities to prepare for the
International Year of Persons with Disabilities and for the decade which had been globally
proclaimed as being dedicated to persons with disabilities, under the Letter for the
Eighties, prepared by Rehabilitation International.
Years went by, and assistance associations were established here and there. There was
the NID, the Association for the Integration of the Disabled (Associação de Integração do
Deficiente - Aide), FCD, and others. We were small, so why shouldn’t we join our efforts to
aim at something bigger, to fight for our rights? So we merged, we united all these
associations, we grew into a movement. That’s how the MDPD was founded! I gave the Aide
to the MDPD. We began to demand that subway stations be equipped with elevators and
ramps, that sidewalks be modified, that the teaching of Braille be made mandatory at
schools by law, demanding Braille rooms, books in Braille prepared for free and also
travelling teachers. We had a lot of demands. (...) There were eight coordinators when the
movement started. There was Cândido, and Rui, and Gilberto and other people. I think
Lourdes was a member too and so was I. We would meet once a month. When the
movement began to take shape, we went to Brasilia to participate in some events. Things
began to move in various states and we joined the national committee. (Leila Bernaba
Jorge Klas)
The group got together in 1979 and 1980. It was a wonderful group, there was no fighting,
and we only talked about our problems, about the laws. Laws were made from top to bottom,
to boss us around. We wanted to put a stop to this. We set up work groups in the movement
to work on: architectural barriers, health, transportation, culture. I was the head of
transportation and architectural barriers groups. We joined our forces to fight together.
(Nilza Lourdes da Silva)
Romeu had already heard about the organizations that had been created and invited the
people from NID to participate in the meetings. The movement was very active. We would
meet once a month in a classroom at the Faculdades Metropolitanas Unidas (FMU) college,
or elsewhere. There were more than 80 people at these meetings, the majority with
disabilities. They would sit in concentric circles. People came in from other parts of the
state to participate in these meetings. These meetings took place on a regular basis for one
or two years, until the State Council was created, in 1984. Romeu told us about the
International Year. In 1980, we held various meetings in São Paulo, as well as nationwide
meetings to prepare for the International Year. These meetings involved many people and
the meetings were very interesting. (Lia Crespo)
The social movement expanded and recreated the public space. The
movement also changed the image of persons with disabilities by disregarding its former
spokespersons (physicians, priests, politicians) and becoming their own spokespersons.
The most important thing is that they made themselves heard. This group, or collective,
action became possible because the group members realized that they would have to
become "citizens."
I really began to see myself as a citizen. I no longer saw myself only as an individual
trying to solve things on my own. I began to see myself as a citizen with rights and I
realized I had to demand that my rights be respected. (Lia Crespo)
With the exception of the few activists that had already been involved in political
actions prior to the birth of the movement, all the other persons learned the skills to
negotiate and harmonize different interests when attending meetings. This was
something unheard of in the lives of these people prior to joining the social movement.
Thus , the activists reviewed the concept of State and Society in contemporary terms..
They went beyond the scope of their own private concerns and made an active effort to
change the reality of all the people facing similar difficulties. They know that their
destinies are linked to the destinies of the other citizens. Therefore, it is natural for
activists of the disabled persons´ movement be actively interested in what happens in
society in general. Thus, it is natural for " these same men and women" to become "
active subjects of explicit policy" (Castoriadis, 1992, p.113). Hence, by extrapolating the
limits of disabled persons´ needs and, at the same time, by raising the interests of these
persons to higher levels, many activists, trained to lead the movement, entered into
politics. The respondents that entered politics include state representative Célia Leão
and city councilman Celso Zoppi.
Battle strategies
In the manner of a multifaceted movement, the different groups of persons with
disabilities had different yet complementary strategies. The NID was dedicated to
spreading its action-related philosophy by means of an amusing newsletter and to
preparing public policies. In addition, It was outstanding for its efforts to " force" access
for persons with disabilities and to provide them with services to allow them to get
together in theaters and cinemas and to attend different cultural events. The FCD
became renowned for picking up persons with disabilities whenever they were in special
situations (such as in jail, hospitals and even at home) to "retrieve" their self-esteem and
mobilize them to participate in the movement. The MDPD was very active in terms of
preparing laws to guarantee the rights of the disabled. The association would address
the main issues thoroughly and fought a fierce battle against the medical model of
disabilities. Everybody got organized and participated in various protest marches to
protest against lack of access. Some of these protests are now being considered as
symbolical, such as the protest march held in the subway, because an activist had hurt
herself on the escalator. Another symbolic protest march was held in front of the Teatro
Municipal concert hall in downtown São Paulo.
, Romeu, Ana Rita and I would sometimes stay up all night writing documents such as a
proposal for the creation of an entity to coordinate policies for persons with disabilities in the
State of São Paulo. (...) The first democratic elections for governor, senator, state congress,
and federal congress were held in 1982, after the country’s return to democracy. Those
were exciting times. The NID organized round table discussions with the leading political
parties to discuss issues related to people with disabilities. We voiced many complaints
about lack of access to voting sites. I went to Brasilia many times to talk to the politicians.
(Lia Crespo)
We would go out together, to the Utilidades Domésticas (UD) trade fair, to the movies, or to the
theater. We went to bigger places ,to attract attention! We were there to see and be seen. We
would walk around and people would look at us in admiration. Other people were shocked.
(...) They would say: “Goodness! What is this bunch doing here? Are they begging for money?”
This kind of biased comment was common, because people with disabilities out in the streets
would often beg for money. We wanted to change this perception; we wanted people to see
that even though we are disabled we are human beings with the same interests as normal
people. We like to go to the movies, to the theater, and shows. (...) Our events and activities
were held frequently. In 1981, the International Year, the NID took part in an arts and crafts fair
held on Praça Roosevelt square. Any person could participate. We displayed something on
architectural barriers. (Marisa do Nascimento Parro)
The thalidomide law was enacted in 1982 and granted me the right to be paid four minimum
salaries. But the government was no longer applying monetary adjustment in spite of
rampant inflation, so the amount was devaluated. In the past there was only one association
that represented the victims of thalidomide, the ABTV (Brazilian Association of Thalidomide
Victims - Associação Brasileira das Vítimas de Talidomida), which had been founded in the
State of Rio Grande do Sul, and regional offices in the States of Minas Gerais and São
Paulo. The association was powerful. I would call them and ask: “What are you doing? What
is going on with our pension?” They would answer " We’re filing a complaint, but...” (...) So I
said to myself “I’m going to do something about this, because nobody else is!” So I placed
an ad in the newspaper for free, with the title “Victim of thalidomide join our group” and
included my telephone number. (...) Half a dozen people called me. . Everybody was
getting paid a lower pension than mine, because the amount depends on the person’s
disability. I started chasing politicians. I would go to their offices to tell them that " I won’t go
away until I can tell you my sad story.” I would tell them: “Look, I went to college, but I can’t
find a job because of transportation difficulties and other difficulties. What am I going to do?”
I talked to a senator who promised me he would schedule a meeting with the Minister of
Social Security. But who was Cláudia? What is this association in São Paulo? (Cláudia
Marques Maximino)
In 1980 and 1981, during the International Year, we held round table discussions. We would
discuss all sorts of problems. I was a member of the transportation group - we would meet
every Friday at the ABNT (Brazilian Technical Standards Association - Associação Brasileira
de Normas Técnicas). Many people participated in these discussions - people from the
University of São Paulo, sociologists, physicians, and people specialized in architectural
barriers. The discussions were always very lively. This association led the way. We held a
protest march to demand accessibility in the subway system. A friend of mine, Helena Melo
de Oliva, fell down the escalator because the security guard did not how to carry her down. It
was terrible! She had been through chemotherapy. She was wearing a wig at that time and
she lost it. The whole situation was very sad and embarrassing. We were showing people
that we needed accessibility. We needed the barriers to be removed! (Nilza Lourdes da
Silva)
The International Year of Persons with Disabilities was in 1981. We had faced a huge battle.
NID published a newsletter called “O Saci”. I worked on the illustrations and on the layout
and Lia wrote the texts. She is a top journalist with a marvelous brain. Ana Rita allowed us
to publish " O Sacizinho" in her house, located in the neighborhood of Pinheiros, near the
University of São Paulo. We would stay up all night mimeographing copies of the original
newsletter so that we could hand It out. We viewed our lives as a satire, it was very funny.
We would make jokes about our adventures, our crazy attitudes, our meetings. (Gonçalo
Aparecido Pinto Borges)
The subway finally came to São Paulo but the authorities forgot to provide access for
disabled people. So I said, " It’s useless to keep asking, we have to go to court and file a
lawsuit.” I think that was the first time anyone had filed a lawsuit for our rights - we filed it
against the Companhia do Metrô subway company. (Márcia Cruz).
Fraternity held a nine-day meeting during the International Year of Persons with Disabilities.
We stayed at a house called "Retiro de São José," which had been lent to us. I stayed there
with everybody else, doing some stuff. It was the feast of São João. It was so beautiful!
Persons with visual impairment came, people from the South, everybody was there, even the
people with hanseniasis. Among these was a young man whose nickname was Bacurau. He
composed many songs - he also sang very well. That International Year was really great! (...)
We took the disabled to the subway. They asked: “Why doesn´t the subway stations have
ramps?” The subway was three hours late that day A young woman who had cancer rolled
down the escalator, because the security guard did not know how to hold her. So the other
people didn’t want to go down. A disabled young man called Edson, who came from the city of
Campinas, and who had very fragile bones said to me: “Lourdes, ask them to stop the
escalator because I want to get off.” I told the security guard: “Stop the escalator so that they
can get off because they’re scared of using it.” Because it was impossible to go through. There
was no special bathroom or elevator for the disabled. Nothing. From then on, they put in a
special elevator, they built ramps, to speed things up. So things improved. This is the kind of
work that the members of the FCD, like me, did willingly. (...) This happened soon after we had
founded the Fraternity. I really loved that work! (Maria de Lourdes de Ribeiro)
There were many protest marches in 1981. We would stop the traffic on Avenida Paulista
avenue. We wanted people to see us, because people never really saw us! "Where are
they? There are no disabled people!" So we all took to the streets so that society would see
us. We wanted the government to realize that we existed. (Aparecida Akiko Fukai)
We started leading the way. Laws were enacted to oblige companies to offer job positions.
Schools were obliged to become inclusive; banks and churches were obliged to provide
accessibility. Sometimes we had to make a lot of noise. I remember one time when I was trying
to walk into a bank branch. I was told that the key had been lost. So the bank employees asked
me if they could wait on me outside. They could have done that. But what if I had really needed
to go insider? What if the same thing happened to a person who was not aware of his rights? All
of these thoughts crossed my mind so I said to myself: "It’s time to make a scandal. So let’s do
it!” I gave the guys five minutes to find the key. The woman didn’t find it so I called the police.
The funny thing is that the police came in three minutes, and the woman found the key at the
same time. I didn’t file a lawsuit at that time, but I know of people who did. (...) This is why I
always say that when I demand my rights, I know that I demand that the rights of all the disabled
persons be respected. I can’t remain silent - I don’t always need to make a scandal. I am
demanding that my rights be respected on account of those who do not know their rights. We
are battling for our rights to be respected. We are activists 24 hours a day. There are other
interesting cases and situations. When I go to a restaurant, I ask the owner and a waiter to carry
me up the stairs. I do this once, twice, three times. ~when the restaurant owner finally builds a
ramp, then I go to another restaurant and do the same thing. Because I got tired of being
carried, like those romantic heroes, going up and down stairs in my wheelchair, waving at
everybody, in the spotlight. I want to enter a restaurant or to a movie theater like an ordinary
citizen, through the front door, like everybody else, and not through the kitchen door. (Adelino
Ozores)
The International Year was very important to make people aware of persons with disabilities.
It emphasized that we should no longer live in reclusion, always at home, surrounded by four
walls. In the past, persons with disabilities were only seen when they were begging for
money in the streets or on their way to the hospital. Persons with disabilities were not seen
around the city, taking part In the life of the city. So raising this awareness led persons with
disabilities to sow their faces, to start participating and motivate other persons with
disabilities to come out of their houses. The objective of the FCD was to visit a person with a
disability. Because we felt that personal contact was extremely important. Personal contact
brings hope and experience. It is one thing for a person to visit a disabled person and the
disabled person thinks " She says this because she’s not in my shoes!” But when a disabled
person visits another disabled person, this argument becomes pointless. (Celso Zoppi)
The battle of this social movement " was the violent confrontation not only of
interests, but of contradictory worlds.” (Rancière, 1996, 375) It is important to reflect on
the meaning of the simple fact that persons with disabilities are out on the streets and
their demands are object of public discussions and what this represented to Brazil’s
social and cultural structure.
The people who in those times were considered as being " deficient" were fully
aware of this debate and, as a result, broadened the public space of their actions, which
were both " disturbing" and political. They created subjects who were able to mediate the
conflicting world in which they live and guide their choices by means of their
experiences.
Integrated Existence
Our respondents lived their childhood, adolescence, and early adulthood under a
paradigm of integration. According to this model, a disability was a personal tragedy
that could be mitigated if the person submitted him or herself to a rehabilitation
process, prescribed by specialists. Only after the disabled person had been properly "
fixed" - to become as "normal" as possible - and only after getting an education and
professional training compatible with his limitations and potential, was the person with
disability ready to live in society. But society was never encouraged to change
anything. Of course this "permission" implied that the person had to be equipped and
ready to overcome all the barriers along the way. Of course the persons who were
better prepared to deal with such circumstances counted on the effort, support and
encouragement of the family. Of course only the persons who were better prepared,
psychologically and physically, and the rehabilitated persons were able to enjoy the
benefits of living openly in society and in different cultural and social environments and
thus have the opportunity to develop their independence and autonomy:
Ever since I was a little girl, I guess I learned this from my parents, who always told me:
"You’re going to be like other people, you’re going to study, and you’re going to be
somebody!" and if I refused to study, I was punished, I wasn’t treated differently. I was very
mischievous, and when I was naughty I was punished. "Ok, so you don’t want to study? So
no vacation for you." I feared that I wouldn’t be able to go to the country for vacation. I
recall this today and I feel happy. I think the family is the most important thing. (...) I didn’t
see myself as a disabled person - of course I knew I was different, I needed extra help, but a
person has to live, work, have fun, study, a person has to have obligations and duties. So
my family was very important. The family doesn’t have to be overprotective nor treat
disabled persons differently. (Cláudia Marques Maximino)
My mother was a very intelligent woman and she always guided me. She did everything she
could to make sure I had access to everything. (...) I had a totally normal life. My mother
would encourage me to go up on the swing by myself, even though I wore braces on both
legs. I never felt excluded from anything. My mother always tried to create an environment,
to talk to people. I went to the same school for my entire elementary and secondary
education - it was the Caetano de Campos school. Afterwards, I went to Mackenzie to
secretarial school. I took the special exam to become a government employee and started
working early on. (Marcia Cruz)
Several people helped me, but the merit lies with my father and my mother. My parents
pushed me forward, encouraged me and helped me tremendously. When I was born,
psychologists counseled them not to be overprotective of me. Nowadays, I am courageous,
extroverted person. (Gonçalo Aparecido Pinto Borges)
When I was around 14 years old, my father came home with some bookbinding equipment I
don’t know why he brought that, but I suspect that he wasn’t quite sure of what I could do in
terms of work. He bought the bookbinding equipment because it is the kind of work that you
can sit down to do. I started to do some bookbinding, but I set the equipment aside very
quickly. Soon thereafter, my father brought me a typewriter - also used for seated work - and
a bunch of bank forms - my father was a bank employee - and asked me to type information
in them. I was paid for every form I typed out. That was the first time I had ever earned
some money. This is an interesting story because my father didn’t quite know what kind of
work I would be able to do, but he took the risk anyway. (João Baptista Cintra Ribas)
I was warmly welcomed by the nuns of the São José order, in the Pavilhão Fernandinho
wing of the Santa Casa de Misericórdia de São Paulo hospital. The nuns raised me and
counseled me on how to deal with life. At that point, I was already physically disabled, I
don’t know why. I was never Informed about what had caused my disability. (...) The nuns
explained to me that with time, my physical disability could become worse and therefore I
had to prepare myself to be independent. (...) This was many years ago and the nuns were
already concerned about accessibility! (...) They advised me " to choose a profession that,
would make people come to me, since I couldn’t go to the people, so that you can work from
home." And that’s what happened. I became a journalist. (Iracema Alves Lazzari)
When I was young, I used to go to the Monteiro Lobato library, where the people from
the Instituto Padre Chico Institute also went. I had blind classmates in my class at the
Colégio Caetano de Campos school where I studied. (...)Clélia Ferraz, the sister of a
neighbor who was in the same class in school, had polio. We would play together. (...) I
think this relationship resulted in something. I didn’t feel so traumatized when I found
out that my condition would not improve. (Adelino Ozores)
The family support reported by most of the respondents did not prevent them
from being aware that the majority of the persons with disabilities lived (and still live) on
the border of society. In view of this painful reality, the organized movement launched
strategies to mobilize persons with disabilities living in institutions or isolated in their own
homes. To9 this end, the first step was to acknowledge and proclaim their dignity as
human beings, regardless of the disability and of the level of the cognitive, sensorial
and/or physical impairment:
"Minusvalido" in Spanish means disabled. But in our case, this word has another meaning
(less valid). How would you feel if someone told you that you were not worth anything? If
you hear such a comment repeatedly, you will end up believing that you really are worthless.
(...) So how can you tell the disabled person and the family that the disabled person has to
go out? The family will say " What for? Why would you want to go out? You are worthless,
you’re just a lot of work! So why do you want to go out?” I think the family is one of the most
difficult issues. (...) And this is very cruel, because, without the support of the family, who is
the disabled person going to rely on?! (...) So, one of the objectives of the FCD was to
encourage persons to go out. How could this be done? Nobody expected the disabled
person to go to the Association or to look for the Movement. The Movement would reach out
to this person. This provided the opportunity to see the disabled person in his family
environment and to work on the family at the same time. This was really difficult and still is.
This is how we prospected for the new members of our association. (...) Once the disabled
person left the house, he could see the world from a different perspective. The first step is to
make the disabled person feel that he is a worthy human being, to make him realize that he
can have a life, that he can achieve something. And by raising the disabled person’s selfesteem, you can show him the possibilities that life can offer or offers him. This is the main
objective of the FCD. (Ilda Mitico Saito)
The narratives suggest that the respondents´ engagement in the battle for their
rights was motivated by the solidarity towards the disabled persons who did not have
positive familial or social contexts.
I never had any barrier-related problems! My parents raised me in such a way that I never
heard the words "Don ´t do this because you are disabled.” To me, my disability was
something natural; I mean, it was never a reason to be dependent. In 1976, I read a news
article in Folia de Spatula newspaper. The article mentioned a group of persons with
disabilities who were creating a group. The article had a telephone number. so I called them.
I felt I had to help other people. (Ilda Mitico Saito)
I remember that in the 1980s, people were battling for jobs, when those movements began. I
would joke around saying that I had to battle for my retirement, because I was close to retirement
age. (...) At that time, I only walked with an orthopedic brace; I didn’t need a walking cane or
anything else. I used to say: “I don’t have any complaint, my life is ready, all I need to do is live,
enjoy life, and deal with problems.” But after listening to Neuza´s words so many times, I said to
myself: "I’m going to go to the meeting and see what happens.” I really liked Cândido. He had a
good head on his shoulders.
So I said: “I think I can help.” We would write official letters to entities that had no
accessibility, to hotels that had no ramps, these basic accessibility issues. I joined the
Movement for the Rights of Persons with Disabilities (Movimento pelos Direitos das Pessoas
com Deficiência). (Márcia Cruz)
Activism in the movement was also motivated by personal experiences related
to discrimination and prejudice. Liberating oneself from disagreeable experiences was
not part of the " adhesion contract" to an integrated society.
When I was rejected by the medical department of the São Paulo City Government, I
contacted the directors of the AACD. I was a student teacher at the AACD, at that time.
I also contacted the Movement for the Rights of Persons with Disabilities (MDPD). The
coordinator, Cândido Pinto de Melo, advised me to file a lawsuit as a sign of protest
against the prejudice towards persons with disabilities. The MDPD prepared a report for
the Medical Department and for the Office of the Secretary of Health and Hygiene - the
report was signed by Gilberto Frachetta. In spite of the letter from the MDPD Movement
and from the clinical director of the AACD, I was rejected the second time I applied. So
I had to file an appeal. Then, a medical committee from the AACD prepared a report
stating that my cerebellum ataxia condition was stationary. The physician from the City
Government would say: “But what if you have to stay in a wheelchair? How will you
manage?” (...) I was only considered as being qualified for a teaching position in the
public school system after the then Mayor of São Paulo, Mario Covas, intervened in my
favor. That’s the kind of prejudice that existed then. In those times, persons with
disabilities had to stay home. They were not allowed to enter the job market. (Marta de
Almeida Machado)
Activists included the disabled who joined the battle by organizing small groups
of friends or "rehabilitation groups," as well as people who were invited by their
acquaintances to attend meetings, and people who heard about the movement in the
media, especially from 1981 onwards. Up to that time, many disabled persons only had
contact with other disabled persons at rehabilitation centers:
In 1979, I went on a tourist trip to the United States with my 11-year old niece. We went
to all the amusement parks there. All of them had access facilities for disabled persons.
Everywhere, we saw many people with disabilities. So I wondered: “Why can’t we have
the same facilities in Brazil?” I kept this in the back of my head. At the end of that year,
I was taking the entrance exam to enter the Catholic University/PUC; I met a guy who
had cerebral palsy and he had been forbidden to take the writing exam because he was
unable to write. Ana Rita de Paula (who was also taking the exam) and I felt that this
was totally unfair. We tried to solve the problem unsuccessfully. I told her about my trip
to the States. This motivated us to change the reality in Brazil. In early 1980, she
invited me to a meeting at her house. I went with my brother and my cousin. Ana Rita
invited a girl she had met when she was taking her entrance exam for USP, the girl’s
name was Nia (Maria Cristina Correia). Nia knew Marisa Paro who, in turn, was a friend
of Araci Nallin, who had already contacted Romeu Sassaki and so on. Romeu brought
us news about other groups that had been created at the same time. These groups
also held meetings regularly. The other groups had similar histories. They were created
by people who had not met other persons with disabilities. Suddenly, thanks to the
movement, these persons got acquainted, exchanged experiences and joined forces.
(Lia Crespo)
There were about 50 persons with disabilities at the place where we went for
rehabilitation. There were blind and deaf persons, amputees, persons with hanseniasis,
in short, persons with all kinds of disabilities. They all went to rehabilitation with the
same therapists. We all became very close friends. I had a feeling that we could join
forces and organize some kind of powerful organization, to fight for the rights of persons
with disabilities. I had passed the government employee exam and was rejected
because of my disability. (...) So I was motivated to do something for everybody, not
only for the blind, but for all the disabled. At our rehabilitation center, the paraplegic
would help the blind person. The blind person would help take the paraplegic to the
wheelchair. It was that kind of helpful exchange. People are never totally disabled.
There’s only a part of our body that is not working well, and someone else comes along
and gives us a helping hand. We met Lourdes Guarda, who was a marvelous person
with disability. She spent her life lying on a stretcher and lived in a hospital. (...) I was
on one side, she was on the other side, and we held a meeting and a number of
persons with disabilities showed up. (...) And this is how we started to participate in the
movement. (Leila Bernaba, Jorge Klas)
I started to participate in the movement in 1980. Rui had organized an association
called Aide. (...) I specialized in laws related to persons with disabilities and I wrote an
article that was published in the Folha de S.Paulo newspaper. Rui read the article and
called me: “Listen, I organized an association. Are you a member of any group??” I
said that I wasn’t. “So, come to our meeting!” (Cintia de Souza Clausell)
In 1981, I had not become involved in any movement yet. I read some newspaper
articles about the "Movement for the Rights of Persons with Disabilities (MDPD)." So I
checked to see what this was all about. There were various persons with disabilities,
but only one other girl and I had cerebral palsy (CP). So that’s how I joined and became
an activist. (Suely Harumi Satow)
One fine day, Lia wrote a letter that was published in a newspaper. She was very angry
because nobody cared about us! I told my mother: “I have to meet this girl.” Time went
by, and I didn’t try to contact her... The International Year for Persons with Disabilities
came up soon thereafter. Ilda Mitico announced in the newspaper that a huge meeting
was being organized by the Fraternity. I told my parents: “I’m going to the meeting!”
They helped me and dropped me off at the meeting in the morning. They went to the
club and came back to pick me up around 5 or 6 in the evening. That meeting was all
about the International Year - around one thousand people were there. (...) It was the
first time that I had gotten up the courage to leave the house and go somewhere alone.
It was great - I had been such a hillbilly! People would tell me: “Cida, join the Fraternity,
they’re having a meeting, go!” I joined the Fraternity, stayed there for a few years, even
though I did not relate to some of the issues. But I stayed. I wanted to leave home and I
told myself: “I have to make the effort”. (Aparecida Akiko Fukai)
I remember so clearly - it was Sunday, March 26, 1981, when my friend Isaura invited
me to participate in a meeting that was going to be held at the Colégio Anchietano
school, in São Paulo. Many persons with disabilities were going to attend, so I went. At
that time, I would get on buses with the help of Canadian crutches. I met many persons
with disabilities at the Anchietano. Lourdes Guarda was there, and so were Neuza, Ilda,
Célia Leão, Chico Pirata. José Carlos Barbosa, a leading activist, was there too.
Everyone was committed to the cause. It was really great! It was not scary to see so
many persons with disabilities because I had already been prepared to deal with this
issue. (Celso Zoppi)
I had met very few people before I actually started having a busy social life. In school, a
couple of students had disabilities. When I joined the movement, I met many other
persons with disabilities. This was in 1981. That was the International Year of Persons
with Disabilities. I had heard a lot about an organized movement. But things were not as
clear to me then as they are now. So I asked myself: Why not? Why do I have to be
excluded, if I’m also disabled?” Nobody in my house referred to me as being disabled.
On the contrary - I think my family was really surprised when I decided to join the
movement, as if though I didn’t belong "in that group." And I obviously am disabled. My
first experience in the movement was very interesting. I had read an announcement in
the newspaper about a lecture on sexuality by sex expert Maria Helena Matarazzo. I
think the lecture was to be held at the college where Romeu Sassaki taught the Social
Service course for persons with disabilities. So there I went. To tell the truth, my first
impression was strange - I arrived and I saw a roomful of 50 people, all of them with
disabilities. But I didn’t give up.
I was somewhat apprehensive when I saw that, because to me it seemed as if I were
entering into a world full of people whose identity was similar to mine. I remember very
clearly the first three members of the movement: Lia; her brother, Kico, and Romeu
Sassaki. Then I joined the NID and slowly started building relationships with other
people. (João Baptista Cintra Ribas)
I did some work at home and, together with other people, we created a movement
called "Movement for the Citizenship of the Disabled - Movimento de Cidadania do
Deficiente". At the time, we were not referred to as "a person with disability." We wrote a
number of letters to politicians in Brasilia, to consulates, asking for information what the
situation was like in other countries. We received some responses from Holland. I
wasn’t a very active group member at the time, because it was hard for me to move
around because I was a tetraplegic and could only move around in a wheelchair. And I
didn’t have anybody who could drive me around either. So I worked from home, trying to
develop other things; my activism was to inform and be informed. (Adelino Ozores)
In the case of the narrators of this project, the political battle had a well-defined
platform, which was the search for peers and for a more participatory life. This motivated
the creation of the groups and the actions the groups were involved in. This attitude can be
felt in the words of the narrators, who talk about their early activism as something that
shaped their lives. Such activism made them feel included and made their lives
meaningful. In other words, activism increased their confidence and was their way of
telling their story and to lead meaningful lives.
In this sense, thinking about the possibility of having a choice, one can say that
men and women fighting this political battle led the way to achieve full citizenship and to
gain public space (Chauí, 1996).
Personal tragedy x social phenomenon
Life as a person with a disability is a process that is transversal to the social
class. Thus the exchange of experience by people with different educational
backgrounds and from different income groups, yet at the same time, with similar life
histories, led to a new way of viewing the person’s own disability and society:
I read a lot; I’ve been an avid reader ever since I was a child. (...) I would read the
Jornal da Tarde and the Estado de S. Paulo newspapers every day. At the age of 19,
while I was reading the Estado de S. Paulo, I saw a short note about a meeting with
persons with disabilities. This aroused my curiosity and I decided to attend the meeting.
I asked my aunt, who had a car, to drive me to the meeting. That’s where I met Lia and
Ana Rita. At that meeting, I started to view disabilities from a different perspective. It
was my rite of passage. I had a job at the Banco Real bank. I used to commute by bus
every day, from the city of São Caetano to Paulista Avenue. I always needed the help of
the bus driver or from a passenger, to climb on the bus. I thought that was awful and
this really bothered me a lot. And I felt guilty about this. I used to think: "I’m a bad
person; I carry a problem.” Until one day, after having built a relationship with other
persons with disabilities, I began to realize that the bus - and not I - was wrong. That
was when the coin dropped for the first time! This is what nowadays is referred to as
acknowledging that disability is a social phenomenon and not a personal tragedy. That
first meeting I went to, resulted in the former "NID (Center for the Integration fo the
Disabled - Núcleo de Integração de Deficientes)". (Tuca Munhoz)
I viewed my polio-related disability as a fatality, one of those things that just happen.
My twin brother Kiko´s disability had also been a fatality, but of a different nature. We
always felt that nobody was to blame, or be held responsible for our disabilities. We did
not feel that we had been victims. On the contrary - we were super heroes. For the first
time, at the NID and in the movement, we were discussing our issues with other people
with similar experiences. Suddenly, we began to realize that things were not like they
seemed to be. We were not victims, but there were people to be held responsible.
Polio was still rampant and the government was not controlling the disease. That is, we
no longer viewed disability as something individual or personal; we began to view
disability as a much broader collective phenomenon. This changed our mindset. We
made the leap: we stopped thinking of disability as a situation which we had to deal with
on our own. We began to realize that disability was more closely related to society than
to us. This is an attitude that prevails today, but had always been an underlying attitude
in the "Jurassic Era," but perhaps the wording was different then. We can really split our
lives into before and after the movement, because there is a huge difference in how we
lived, viewed the world, and other persons with disabilities before the onset of the
movement. (Lia Crespo)
I learned to live with my disability. I use the words "learn to live," because Lourdes Guarda
said something one day at a meeting of the movement: “The disabled person should not
accept the disability; the person has to learn to live with the disability.” These words really
impressed me. (...) In late 1980 and 1981, I became acquainted with the FCD. At the time,
this acronym stood for " Christian Fraternity for the Sick and Disabled - Fraternidade
Cristã de Doentes e Deficientes." Now, this organization is called " Christian Fraternity of
the Disabled - Fraternidade Cristã das Pessoas com Deficiência." The year 1981 was
outstanding in my life because I began to live, to become acquainted with a different
reality; this thing of taking on a commitment, of becoming involved in a very important
cause. I met Maria de Lourdes Guarda, a fabulous person! She and many other people
helped me realize that I had to learn to live with my disability. (Celso Zoppi)
A paradigmatic shock
The respondents agree that the International Year of Persons with Disabilities
was enormously significant for persons with disabilities and for their claims, which were
visible to society. The social movement, due to the level of maturity of its work and its
skill to mobilize society, was able to benefit from the visibility of the International Year to
put pressure at a social and political level to meet the movement’s needs. During the
International Year, the issues related to the paradigm of integration - ideologically
sustained by the medical model of disability, in effect since the creation of rehabilitation
centers in the 1920s and 1930s - were more clearly revealed.
Under the medical model, disability is a "problem" of the individual. The
objective of the rehabilitation services provided by rehabilitation professionals is to
achieve the patient’s cure or to adapt the patient to his environment in the most " normal"
way possible. In other words, under the medical model, the person with a disability is
responsible for being able to participate in society as it currently exists.
The social model of disability began in the United Kingdom and in the United
States in the 1960s, as a counterpart to biomedical approaches. The social model
ideologically sustains the inclusion paradigm which began to spread from 1990 onwards.
This model views disability primarily as a social issue and transfers to society the
responsibility for the challenges faced by individuals with disabilities.
Under the social model of disability, the " defect" in a structure of the body (or
the partial or total absence of a limb or an organ) is the " injury" - a characteristic like
gender or skin color. Disability, in turn, is considered as being a social category, such as
gender, class, and ethnic group, subject to the mechanisms of exclusion. Disability is
the disadvantage resulting from prejudice, discrimination, and lack of accessibility to
society. According to this concept, the disadvantage faced by the individual depends
much more on the conditions of the social environment than on the " defects" of the
person’s body.
Encouraging a person with a recently acquired disability to retire before the
standard retirement age, for example, may have good intentions; however, it reflects a
set of social values that goes against the motto of the AIPD, “full participation and
equality, " that is, full participation in society and equal rights and opportunities.
This paradigmatic shock is identified in the interviews as being intrinsic to
medical and educational assistance provided by service providers and the government,
as well as to cultural values and to challenges related to achieving social rights. Thus,
one can see the difference between assistance/paternalism and social participation, and
between entities "for" the disabled and entities "of" the disabled:
At that time, the integration of a disabled person obliged such person to enter the
existing structure without any adaptation to find a place or a job. Everything was very
difficult. But I would never find a job unless I accepted this condition. (...) Under the
concept of inclusion, the environment is obliged to provide the necessary conditions to
enable me to do my job. This is different from the integration concept. I had to adapt to
the existing condition. For example, there were no bathroom facilities available for the
disabled - this is an issue of respect for the human being. (Ilda Mitico Saito)
At that time, the medical model prevailed. In other words, the physicians didn’t talk to
me.
They would say something like this "Your son has diffuse paroxysmal
dysrhythmia." I didn’t understand what they were talking about. The years went by,
associations of parents of the disabled and persons with disabilities got together to
organize associations. Many such associations exist nowadays. (...) The Convention
on the Rights of Persons with Disabilities, drawn up in 2008, was one of the most
important things. It was the turning point between the so-called medical model, which
had existed for a long time, and the so-called social model, which is the current model.
The latter model does not ignore a person’s disability; the disability depends a lot on the
person’s surroundings. (Maria Amélia Vampré)
I had an accident on June 8, 1980. I was 25 years old and in my last year in college. I
had been working as a court official for six years. (...) The judge presiding over the court
where I was working as a court official counseled me to "retire - this would be the best
thing for you. There’s no way you can work here in this court. The structure here is not
fit for a person in a wheelchair, there is no bathroom facility.” I said: “But can’t this
change?” He answered: “No, you know we’ve never had anybody in a wheelchair here!”
So the court obliged me to retire. The judge argued further: “How would you commute to
work? You would have to have a car.” I realized that my performance would be much
worse. I had to retire. But I also realized that retirement was very bad for me, because I
was excluded. (Wanderley Ferreira dos Santos)
We had to overcome the prejudice-related barrier. We had focused on this issue very
strongly, since 1981. At first, society was upset by the fact that persons with disabilities
were going out on the street, to clubs, churches, and parties, in short, involved in daily
activities, society was not used to that. It took a number of years to destroy that barrier.
Why? What was so outstanding in the people’s mentality? Assistance and paternalism. It
was much more convenient for society to say: "You don’t have to go to school. We’ll go
there and pick up your book," instead of providing access to school. This issue of
assistance and paternalism was a very powerful one. And it was not because society was
bad. It was the culture that had been embedded for so many years and centuries. So
how could this barrier be destroyed? (Celso Zoppi)
The word "inclusion" was not used, nor were the concepts of "medical model of
disability" or " social model of disability." But we realized that the "medical model" was
very unfair, and another paradigm was necessary to balance these problems. It was
extremely important! (Lia Crespo)
The International Year of Persons with
Disabilities
The AIPD and its slogan "Full Participation and Equality" are considered a
landmark of the disabled persons´ movement. It led organizations of disabled persons to
obtain media coverage and make society aware of their demands. Simultaneously, by
means of events involving hundreds of participants, the activists launched their action
strategies and their objectives for the future. The social movement of persons with
disabilities was able to take advantage of the attention that all levels of government, the
business community, and the media granted to the theme proposed by the United
Nations for the year 1981. These levels of government and society itself, which up to
then had been accustomed to view disabled persons´ institutions and organizations as
representing the disabled persons´ needs, were surprised by a new and, at that time,
an unfamiliar discourse, pioneered by the disabled persons themselves, who were
clamoring for their rights and not for assistance. The AIPD changed the way in which
rehabilitation professionals and society viewed this segment of the population.
When I was working, someone - I don’t know who - suggested that I send an image to
Globo TV network. So I was filmed while working in a drugstore. This image, and
images of other disabled persons at work, was published in the media during the entire
International Year, to prove that a disabled person was able to work and be
independent. (...) The repercussion was so enormous that the issue was referred to
during a performance by singer Roberto Carlos, when the international Year was
launched on New Year’s Eve. On New Year’s Day, I was on duty at the drugstore when
my cousin - who lives in the town of Foz do Iguaçu, in the state of Paraná – called me: “I
saw you, cousin.” I mean, the repercussion was very positive. It opened up many job
opportunities for the disabled. But the problem was that the disabled were not prepared.
(Ilda Mitico Saito)
During the International Year, Globo TV would call Lourdes, for example, saying: “We
need persons with disabilities because a special bus line will be inaugurated to travel
across Paulista avenue.” These calls were at dawn! We would arrive and it wasn’t really
the bus - it was actually the bus driver who had been trained to carry disabled persons
and put them on the bus. Unbelievable! And we were okay with that, we had to grab the
opportunity. Who could say no to Globo TV when it called? (Lia Crespo)
In 1980, when I was still the Secretary of Social Welfare of the city of Piracicaba, in the
State of São Paulo, I was contacted by a group of persons with disabilities. They asked
me to provide support to organize the International Year in 1981. The group was
comprised of members of the "Christian Fraternity of Persons with Disabilities Fraternidade Cristã de Pessoas com Deficiência (FCD)" from Piracicaba. I said: “I will
support you. Let’s get to work.” At that time, I was not fully aware of issues related to
persons with disabilities. I was a disabled person but I had never really worked on this
issue. I had felt prejudice and discrimination, but nothing that I felt was very significant.
My family was not prejudiced and did not discriminate me, and neither did my friends. I
left the Secretariat soon afterwards, but I continued with the group and joined the
Fraternity. We organized the International Year and held a big event at the City Council,
which did not have any adapted elevators. There was a long flight of stairs going up to
the Main Hall, where the event was to be held. Even so, we filled the room with disabled
persons and with normal persons. (Chico Pirata)
The year of 1981 was a landmark year in my life, because I got a life. I became
acquainted with a different focus on life. I was committed to helping others, to become
involved in a very important cause. Everything was very active because it was the
International Year. Many organizations and movements started, persons with disabilities
would make spot appearances on television, with the objective of raising society’s
awareness. I usually say that the International Year was not useful for governments to
implement programs for persons with disabilities. In this respect, I think that the three
levels of government were restricted to this campaign which showed that a disabled
person was part of society, and society had to revert the situation of exclusion. I value
the International Year a lot. It was a way of motivating the person with a disability to join
the battle. (...) That year was very important; many FCD chapters were organized. In
Brazil, there were a total of 280 chapters. This was a period of activism, it was a basic
movement. The proposal of the International Year was along the same lines as the
proposal of the FCD: to view the persons with disabilities as agents that would
transform society, as protagonists! (Celso Zoppi)
I was a member of a subcommittee during International Year. We were given 12 airline
tickets to attend meetings in Brasília. The subcommittee dealt with legal issues. As a
lawyer and disabled person, I had thought of some bills of law. I had worked on a major
project which included many items, such as rehabilitation, health care, technical issues,
architectural barriers, everything. I was also a member of a subcommittee that worked on
drawing up laws at the Ministry of Justice. Meetings were held once a month - it was all
very nice, but nothing very productive or real resulted from those meetings. (Leila
Bernaba Jorge Klas)
The president did not see or talk to us. There were more than 200 disabled persons. At
that time, he went on television on a national broadcast: “Today we are celebrating
International Year of Persons with Disabilities”. In other words, the sensory system was
not an issue. In fact, we were fully aware that persons with disabilities were a group
apart in Brazil. Equality was only contemplated in the law from 1988 onwards. (Gonçalo
Aparecido Pinto Borges)
As I watched TV spots focused on persons with disabilities from all over the world, I
began to have a better understanding of the meaning of the International Year. The
point is that when the United Nations takes this kind of action, it is far from solving the
problem. The objective is to raise the awareness of the population and of the
government. I think we had a very successful year because discussions were the
underlying theme, and, even though we did not get answers to all the problems, at least
we discovered what the problems were. It is important to keep in mind that the decade
of persons with disabilities resulted from the International Year. This was very helpful,
because one year is too little time. (Linamara Rizzo Battistella)
Meetings, Congresses, National Coalition, and
Entities
Two nationwide events are particularly remembered by the protagonists of the
AIPD. The first event was the " 1st National Meeting of the Entities of Persons with
Disabilities - 1º Encontro Nacional de Entidades de Pessoas Deficientes", held from
October 22 to October 25, 1980, in Brasília. This meeting became a historical event
because it congregated more than 500 participants who got together to discuss the
national policy related to persons with disabilities. The second meaningful event was the
"2nd National Meeting of the Entities of persons with Disabilities - 2° Encontro Nacional
de Entidades de Pessoas Deficientes", held from October 25 to October 30, 1981,
concurrently with the "1st Brazilian Congress of Persons with Disabilities - 1° Congresso
Brasileiro de Pessoas Deficientes", held in the city of Recife, State of Pernambuco. At
the time, Messias Tavares de Souza, who was one of the organizers, told the O Estado
de S.Paulo newspaper that the objective of the event, which brought together more than
600 disabled persons, was to “demand changes in the system that provides assistance
to disabled persons, in rehabilitation programs, and to continue the battle against social
and environmental barriers”. Both national events were preceded by preparatory
meetings held in several states and in Brasília.
The "1st Meeting of the Delegates of Persons with Disabilities - 1° Encontro de
Delegados de Pessoas Deficientes" meeting, held in the city of Vitória, State of Espirito
Santo, (from July 16 to July 18, 1982), decided that the "3rd National Meeting of the
Entities of Persons with Disabilities - 3° Encontro Nacional de Entidades de Pessoas
Deficientes" would be held in the city of São Bernardo do Campo (from July 13 to July
17, 1983). As of the "3rd National Meeting," the "Coalition Pro National Federation of the
Entities of Persons with Disabilities" (which had gained official status in 1980 from the
Federal Government) was practically extinguished. This coalition was replaced by
national organizations classified under types of disabilities: "National Federation of
Education and Integration of the Deaf - Federação Nacional de Educação e Integração
dos Surdos" (Feneis, 1987); "National Organization of the Entities of the Physically
Disabled - Organização Nacional das Entidades de Deficientes Físicos" (Onedef, 1984);
the " Brazilian Federation of the Entities of and for the Blind - Federação Brasileira de
Entidades de e para Cegos" (Febec, 1984). These national organizations joined the
"Movement for the Reintegration of Persons with Hanseniasis - Movimento de
Reintegração das Pessoas Atingidas pela Hanseníase (Morhan), which had been
established in 1981.
The " National Meeting", held in Brasília, was an epic event. It took us 18 hours by bus
to get to Brasilia. Lourdes asked several companies to make buses and drivers
available to take us. The buses were filled with persons with disabilities. The trip was
really tough. People from all over Brazil went to the same meeting, having faced the
same difficulties as we had. This was a memorable event. We had already attended
various meetings of persons with disabilities. But you get a major cultural shock when
you walk into a room and see 500 disabled persons! Various matters were discussed.
We had political debates, discussions, and different opinions. Logistics was taken care
of by the people from Brasília. They had a hard time. People were housed in army
barracks, convents, clubs, homes, and many people stayed with friends. When our bus
arrived, there were no housing arrangements for us. But the organizers found a way
and started housing people all over Brasília. But there were very few buses available
and no bus was accessible. The bus would drive around and stop: "Hey, it’s your turn to
get off." Romeu and the bus driver would get off, then they would bring down the
wheelchair and then the disabled person. They would sit the person on the wheelchair.
Romeu and the driver would get back on the bus to start everything all over again. The
bus would drive around and around and stop again. " It’s your turn now." Some 15
people were on the bus. The bus dropped people off at night, but all the buildings in
Brasília look alike at night, so the impression was that the bus just kept going round and
round and would always stop in front of the same building. I felt as if I were a character
11
in an episode of that old TV series, " Twilight Zone” . We were the last people to get off
the bus. By then it was already dawn. I remember Romeu lying down in the bus aisle,
exhausted, after having worked all day. (Lia Crespo)
The "National Coalition " was created during the national meeting in Brasília. The
coalition congregated organizations of all kinds of disabilities. During the "Brazilian
Congress" in Recife, the four disability categories competed for recognition. But it was a
healthy competition. Nobody was inflating any egos or benefitting any institution. And
each organization wanted to see its demands being met. The blind were there along
with the deaf, the physically disabled, and the persons with hanseniasis. The mentally
impaired - as they were referred to at that time - did not attend the congress. The
competition for space already focused on the existence of four disability areas, created
after the "National Coalition" had been extinguished. This was when the Onedef
("National Organization of the Entitites of the Physically Disabled - Organização
Nacional de Entidades de Deficientes Físicos"). Rui and I were part of the coordinating
team. (Celso Zoppi)
I went to Brasília in October 1980 to participate in the National Congress. (...) I was
rehabilitated! I was 25 years old and I went in my wheelchair. (...) That’s when I realized
how nice it was to sit in a wheelchair! My wheelchair was something beautiful; the
walking canes were beautiful, I saw how the deaf used sign language to express their
joy. I witnessed blind persons bumping into a wall and laughing at themselves! The
mentally disabled were very helpful. Everybody was equal - we all had the same joy,
sadness, objectives, dreams, and desires. I felt the will to live. Isaura Pozzatti, a friend
of mine, said “Célia, a friend of mine from Rio wants to have an interview about the job
market for disabled persons.
11
. The Twilight Zone was a popular TV series in the United States. Created in 1959 by Rod Sterling and directed by
Stuart Rosenberg, the series consisted of science fiction, mystery, and horror stories.
He wanted to interview persons who had become disabled to find out whether they were
working or not. (...) He said that he had read a survey which showed that in fact there
was no job market for disabled persons. Businessmen and employers did not hire
persons with disabilities. In addition, many persons with disabilities had little or no
education. So I said: “I think that attending this congress means I’m going in the right
direction!”(Célia Leão)
Meetings, seminars, state council, and the
Constitutional Assembly
After the AIPD, the movement of persons with disabilities went into action to
create state and local organizations, comprised of organizations representing civil
society, the objective of which was to coordinate public policies for this segment of the
population.
Various existing documents and news articles describe how the NID began to discuss
the creation of a state entity in 1982. The movement held monthly meetings in 1983 and 1984, to
organize a seminar with the objective of discussing the state policy for disabled persons and of
describing the structure of such state entity. The seminar was held in 1984 in São Paulo, and was
attended by 300 to 400 people - all of them engaged in the movement, representing entities of
and for persons with disabilities. If I recall correctly, the seminar was held at the AACD. At the
seminar, we elected our representatives to the Council. In 1984, state governor Franco Montoro
enacted a decree which established the "State Council for the Issues of Persons with Disabilities Conselho Estadual para Assuntos da Pessoa Deficiente,". After a few years, the entity name
was changed to "State Council for the Issues of Persons who Have Disabilities - Conselho
Estadual para Assuntos da Pessoa Portadora de Deficiência" and now the entity is known as the
"State Council for the Issues of Persons with Disabilities - Conselho Estadual para Assuntos da
Pessoa com Deficiência." (Lia Crespo).
We motivated, announced, and implemented the Forum of organizations of persons
with disabilities from São Paulo. The Forum included such people as Romeu Sassaki
and the deceased physician Robinson de Carvalho (from the city of Ourinhos), as well
as representatives from Taubaté; me, from Piracicaba, and the members of the
organizations from São Paulo, such as: Fraternity, MDPD, NID and other movements.
Soon after the International Year, we continued this Forum, which resulted in the "1st
Stat Seminar of persons with Disabilities - 1º Seminário Estadual das Pessoas com
Deficiência", held after Franco Montoro was elected as state governor of São Paulo, in
1983. (Chico Pirata)
In the period from 1987 to 1988, the country was getting ready to draw up the
new Federal Constitution. In the early 1980s, the social movement worked on and
prepared the proposals that would be submitted to the members of the constitutional
assembly. The Brazilian social context was prepared in this respect. After the end of the
military regime and re-democratization, many groups were getting organized to be
represented and contemplated in the country’s new Constitution. The laws that
contemplate the treatment of persons with disabilities and that guarantee their rights are
set forth in the Constitution, promulgated in 1988, are the result of the social movements
of previous years. These laws are the legacy of the organization and mobilization
inspired by the AIPD.
The movement to draw up a new Federal Constitution became more active. We did
something very interesting with the support of the Montoro state government: we held
sector meetings to discuss how disabled persons would be contemplated in this new
Constitution. We held 19 meetings. At that time, approximately 500 municipal regions
were involved. We held 19 meetings in different parts of the state. The first and last
meetings were held in the city of São Paulo, the objective of which was to discuss what
should be contemplated in the Constitution. (Linamara Rizzo Battistella)
I didn’t give any lectures during the International Year. I was focused on the laws
contemplating persons with disabilities. (...) In 1988, we asked disabled persons and
others to sign a petition, requesting that our proposals be included in the Constitution.
At that time, I traveled to Recife, Fortaleza, Manaus, Brasília, Paraná, Minas Gerais and
Rio de Janeiro to talk about the laws. Some people had never heard of this. (...) I
compiled all the issues related to these laws. I had an assistant, and I coordinated the
effort. The "Social Solidarity Fund - Fundo Social de Solidariedade" asked me for
permission to publish my work. I agreed. (...) A booklet as prepared and published with
the rights of persons with disabilities, containing parts of the São Paulo State
Constitution, of the Law of the City of São Paulo, and of the Laws governing Children
and Adolescents. The title of the booklet was “Direito das Pessoas Deficientes”. I still
have a copy. (...) More than 30 thousand booklets were printed. We took them along on
our trips. The booklet was very successful. (Cintia de Souza Clausell)
Each national entity organized a forum. Meetings were held in the state of Minas Gerais
and in the capital city of Belo Horizonte. A big meeting was also held in the city of
Manaus, during which we prepared the final proposals that would be submitted by two
persons from each disability category. These persons included two physically disabled
persons representing Onedef, two blind persons representing the "Blind People
Federation - Federação dos Cegos", two persons representing the deaf, and two
persons representing Morhan, which is an association of persons with hanseniasis.
That was an outstanding moment. Most of those proposals were contemplated and are
now part of the Federal Constitution. Society had one kind of attitude before the
International Year. From. 1981 onwards, society had another attitude, and the country
had a new Constitution. (Celso Zoppi)
Everything became consolidated from the International Year onwards. Councils were
created. The first council was created In the State of São Paulo. Other state and local
councils followed soon thereafter, in the states of Pernambuco, Rio Grande do Sul,
Minas Gerais and other states. We discussed and approved 14 proposals to be
submitted to the lawmakers. All our proposals were approved. Of course there were
other individual proposals submitted by congressmen and other groups. The organized
movement submitted 14 proposals, which were included in the Constitution,
promulgated on October 4, 1988. (Chico Pirata)
Global Mobilization
The global mobilization around the International Year was very powerful. The
exchange of experiences among persons with disabilities from all over the world
established new parameters for mobilization and made it universal. The international
makeup of the mobilization continued after the AIPD.
I heard about the 1st World Congress of Persons with Disabilities organized by the
United Nations and by the DPI (Disabled People International), scheduled to be held in
Canada. I wrote the organizers expressing my desire to attend the congress but I explained that I
did not have the necessary funds to do so. When I came back from the 1st Congress, held in
Recife, I was informed by telegram that the organizers would send me an air ticket. I had get up
my courage to go alone. It was a challenging experience, but a very rewarding one. I had never
been out of the country before. But I had the power that I had acquired from the FCD. We created
the Global Council of Disabled People and Continental Councils. I was the only representative
from Brazil, and, as such, I became a member of the Latin American Council and of the Global
Council. I was shocked when I realized how many responsibilities I had taken on. I didn’t know
whether I would have the strength and conditions to develop anything. But fortunately we had a
lot of help. We communicated continuously with Canada and with Singapore. We held annual
meetings. And this is how we outlined what persons with disabilities wanted from society and from
governments. The basic issue was accessibility. Later on, we realized that accessibility was too
restricted, as it only pertained to persons with physical disabilities. It had been concurrently
established at the World Congress that the communication issue was something fundamental:
Braille and sign language had to be considered, and sign language interpreters had to be
included in our events. At that time, we were not concerned about detailing other Issues
(education, health care, transportation, etc.), what nowadays is referred to as public policies. The
main issue was accessibility, and, based on accessibility, to have a voice in society. I would relay
information on the discussions taking place at the World Congress and at the Latin American
Council to activists from various States in Brazil. I recall that at that time Rosangela Berman was
very active in Rio de Janeiro. Our good friend, the deceased Rui Bianchi, and other people from
the FCD were also very active. (Celso Zoppi)
In 1990, I attended a seminar at the Vatican. The seminar was on persons with disabilities. This
seminar was one of the results of the International Year, and it focused on improving awareness
on an international level. The Catholic Church also began to take part. (Chico Pirata)
The movement, the AIPD and its legacy of
changes
The actions of the movement, inspired by the AIPD, left a legacy of changes, as
pointed out by the respondents.
Society has changed enormously since the early years of the movement and now. Laws were
approved that changed not only the architectural landscape, but also the culture itself. Society
transformed itself as it came into closer contact with persons with disabilities. This transformed
persons with disabilities themselves, even those disabled persons that were not active in the
movement. They enjoy this new condition. This was our major achievement - this new way of
dealing with persons with disabilities. (Lia Crespo)
Most of the States that had organizations of disabled persons lobbied state assemblies to
contemplate there issues in the State Constitutions. We are from the city of Americana, and we
also did the same In 1990, when the General Municipal Law was drawn up. We from the FCD,
had a very active role in this respect at that time, and the result was that most of the proposals
that we had submitted to the state congressmen were contemplated In the General Municipal
Law. It doesn´t matter whether Americana has 10, 100, or one thousand disabled persons. The
point is that everybody has the right to have access and this right had to become a constitutional
right. These three legal instruments: the Federal Constitution, the State Constitution, and the
General Municipal Law are very important for the community of disabled persons. They provide a
solid basis which allows us to talk about accessible transportation or adapted transportation, In
the case of the existing fleet. It allows us to fight for the inclusion of disabled students in the
school network, in accessible sports activities and health activities. (...) We knocked on many
doors. But I’m sure that everything that we have achieved since 1981 has been major and
achieved in a short period of time. Is current society the ideal society? No, it’s not. Is all this
inclusion really happening? No, not as it should be happening. But if we compare 1981 and
2011, we can attest to the fact that enormous progress has been made in a short period of time.
(Celso Zoppi)
The relationship between the situation before and the situation after the contact
with political activism, between the personal discourse and the activist discourse,
between the past and the present, is something that crops up all the time in the
conversations with the respondents. The narrative makes sense when these
relationships are shown. It seems correct to state that one can only bear to remember
everything that happened in the past because things are different in the present. It is
very important to explain what is different. What seems to be most relevant is the
transformation from accepting oneself to being oneself. The difference is defined in the
being. It Is defined in a new human being, with a group identify, a being who Is more
confident and who, by narrating his story, reinforces his ability to act to change his
reality. Looking from this angle, one begins to understand group action and the
Importance of everything that has been achieved, which goes beyond achieving rights
and approving laws
.
Persons with disabilities and mobilization today
Based on all these stories. one can conclude that inclusion is a battle to be
fought by everyone and that society becomes better when it accepts people who teach
us how to exercise our citizenship and how to be citizens with rights. We can certainly
attest to the social change made by this group of persons with disabilities, but it is
equally important to emphasize that the way must continue to be followed.
The article was written by Brazil. There were 40 of us in Brasília, (...) everybody
working together, discussing, and preparing an article, for the Convention on Persons
with Disabilities, that defines a person with disability. (...) The article states that all
disabilities are magnified by the physical environment. If the environment is adjusted, I
am less disabled or I am not disabled. I am no longer disabled, depending on the
situation, because the physical environment is totally accessible. So you see how the
concept of disability changes. That is, I am a person with a disability and I become
totally integrated according to the physical environment. This issue has to be
addressed, read, and assimilated. This is a new issue, approved and sanctioned now, in
2009, 2008. (...) People have to have this awareness they have to understand the
importance of the articles set forth in the Convention. We have (...) to start addressing
the issue of citizenship and include this in the school and college curriculum. (Adelino
Ozores)
As the years went by, and the country went back to democracy, the movements slowed
down to some extent. (...) Due to judicial achievements, the movements disbanded and
moved on to another level, which entailed working with the Legislative and the Judiciary
Powers and with the Public Prosecution Office. Thus the organization of persons with
disabilities changed. Brazil has the best laws in the world in this respect. I think that the
battle being fought by persons with disabilities nowadays is to see to the compliance of
these laws. This is not a question of privilege. We don’t want any privileges. We want
rights. We are different and the law has to treat those who are different in a different
way. This holds true for all groups. (...) When we get ready to try and help those who
are more fragile, we have to be ready to help everybody. I think these two issues are
outstanding in the current progress of the movement of persons with disabilities: see to
the compliance of existing laws and look after accessibility to make sure that all people
are welcomed into society. (Chico Pirata)
These achievements are very important. But the fact is that not all persons with
disabilities enjoy them. Most of the disabled persons are still totally isolated, just like in
the past. They are Institutionalized, or hidden at home. I mean, we changed many
things. Most of all, we changed the discourse. But there is still a lot of prejudice; there
is still a lot that needs to be done, there are still barriers that have to be eliminated.
Many disabled persons don’t have rehabilitation many disabled persons don’t have a
wheelchair to come out of the house. Many disabled persons don’t go to school
because they don’t have the means to get there. (Lia Crespo)
Even though the possibility of access to social and cultural assets is not enjoyed
by all persons with disabilities, it is important to keep in mind the relevance of the
records of memories that recall daily, private lives, in a book that celebrates the 30th
anniversary of the International Year of Persons with Disabilities.
In this case, the book also reveals - from a different perspective - another story. Thus, it
multiplies the possibility of building up knowledge on a group of people, based on their
own reflections.
Knowledge is built through dialogue, taking into account identities and
convictions. The interviews that generated the reflections expressed in this chapter, due
to their subjective nature, make the whole story more human and helps us understand a
battle that in itself also humanized the stories´ subjects. Therefore, this exercise
becomes valid as It preserves and diiscloses narratives and memories of a major
moment of our contemporary history. In addition, the life stories of the protagonists of the
AIPD recall the legacy and identity of this group, by focusing on the feeling of belonging
to a movement that was shaped around and became rooted to the fight for the "right to
be." This right was achieved thanks to the battle of the people introduced in this text. To
conclude, we must guarantee that the rights be respected by everybody.
Bibliography
CASTORIADIS, C. Os intelectuais e a história. In: As encruzilhadas do labirinto 13. O
mundo fragmentado. Rio de Janeiro: Paz e Terra, 1992.
CHAUÍ, M. Público, privado, despotismo. In: Novaes, A. (org.) Ética. São Paulo:
Companhia das Letras, 1996, p.345 – 390.
CRESPO, A. M. M. Da invisibilidade à construção da própria cidadania. Os obstáculos,
as estratégias e as conquistas do movimento social das pessoas com disability
no Brasil, através das histórias de vida de seus líderes. Tese de doutorado,
FFLCH/USP, 2009.
GOHN, M. G. Teoria dos movimentos sociais. Paradigmas clássicos e contemporâneos.
São Paulo: Loyola, 1997.
__________. Conselhos gestores e participação sociopolítica. São Paulo: Cortez, 2003.
MEIHY, J. C. S. B. Manual de História Oral. São Paulo: Loyola, 2005.
NALLIN, A. Reabilitação em instituição: suas razões e procedimentos. Análise de
representação do discurso. Brasília: Corde - Coordenadoria Nacional para
integração da pessoa portadora de disability, 1994.
RANCIÈRE, J. O dissenso. In: NOVAES, A. (org). A crise da razão. São Paulo:
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RIBEIRO, S. L. S. Visões e perspectivas: documento em história oral. Oralidades, São
Paulo, nº. 2 – jun/dez 2007, pp. 35-45.
CHAPTER
2
To
From exclusion to full participation in
society: The international overview of the
30 years of the IYPD
Romeu Kazumi Sassaki
There is no doubt that the activities during the International Year of
Disabled Persons, held in 1981, contributed significantly to raise the awareness of
society as a whole to the rights of disabled persons.
How was this contribution decisive? This question will be answered in the text
below, divided into three parts: I–Before the IYDP. 2–During the IYDP. 3–After the
IYDP.
Before the IYDP
It is fair and timely to emphasize the very important role played by thousands of
professionals and organizations in their work with disabled persons, especially in the
fields of education and employment
The years from the 1940s to the 1960s: Technical
cooperation of the United Nations
In 1976, the General Assembly of the United Nations Organizations established that the
year 1981 would be the International Year for Disabled Persons. The UN began to work
on promoting the well-being and the rights of the disabled in the 1940s and continued
this work for the next 30 years, until the 1980s. It expanded activities in this respect even
more from 1981 onwards, as the period from 1983 to 1992 was established as being the
United Nations Decade of Disabled Persons. This has continued throughout the rest of
the 20th century until today, when the world celebrates the 30th anniversary of the AIPD.
The actions of the UN in Brazil, by means of technical aid provided by
international experts specialized in preventing disabilities, by education, and by physical
and professional rehabilitation, were developed in the 1950s and 1960s. During that
period, the United Nations held seminars and organized study groups, distributed
technical publications and trained teams. The United Nations also implemented
rehabilitation centers and granted scholarships (In my case, I was given a grant to take
part in professional rehabilitation programs in the United States in 1966 and in the
United Kingdom in 1967).
1970/1980: The Decade of Rehabilitation
Image. Logo of the Decade of Rehabilitation
Proclaimed by Rehabilitation International, the United Nations Decade for
Disabled Persons was celebrated all over the world. The focus was on the importance
of physical, psychological, social, and professional rehabilitation programs. This decade
was outstanding because it witnessed the advent of the "reintegration of rehabilitated
persons" concept in society. However, this new concept was still linked to the "medical
model of disability" concept formulated by specialists. To be emphasized is the fact that
the " social model of disability" concept, conceived by disabled activists, gained
exposure only in the early 1990s. (SASSAKI, 2010, p. 44-48)
The General Assembly of the U.N. adopted two documents during the Decade for
Disabled Persons: in 1971, the U.N. adopted the Declaration of the Rights of the
Mentally Impaired (yes, these were the exact words) and in 1975 It adopted the
Declaration of the Rights of Impaired Persons (also the same terms). Both declarations
were considered as being revolutionary in those times. These declarations made it clear
that intellectually impaired persons or persons with other impairments were entitled to
the same human rights as any other people. In addition, the impaired persons had the
right to benefit from specific measures corresponding to special needs resulting from the
person-specific impairment.
These specific measures included measures referring to protection from
exploitation, to legal procedures, access to overall services, the right to develop their
skills, and to the speeding up their integration into society. This process had some
educational level and , some professional skill) could be integrated into society, that is,
they could fit into spaces restricted by architectural barriers and attitudes in schools or
companies. To be highlighted is that the " inclusion" paradigm only appeared 20 years
later.
1974: First public protests
Image. Black and White photograph. Subtitle: Disabled persons protest in the downtown streets of New York. Photo: United Cerebral Palsy of New York City
Disabled persons in New York City blocked traffic to protest against the gas
rationing program that had been implemented by the New York State Government in
1974. The protest march was successful, because they were exempt from the program,
and this exemption allowed them to buy gasoline without any restrictions and,
consequently, enabled them to drive and/or be driven - in adapted automobiles.
The core issue for these disabled persons was that their mobility be
guaranteed by means of gasoline-fueled transportation. In other words, they were
fighting for their right to come and go with no restrictions. The historical importance of
this protest march, that could have focused on other core issues and could have been
held in other cities becomes clearer if we take into consideration that there were no
coordinated efforts by disabled persons nor by governments in those times, efforts In
the sense of respecting the fundamental freedom and human rights of this segment of
the population. Nonetheless, these persons were able to exert positive pressure on
the government. (REHABILITATION INTERNATIONAL, 1975, p.9)
Image. Cover of the publication “News from the IYPD Secretary”, with the UN logo for the IYDP.: “The Secretary-General talking to Mrs. Adamson (in wheel chair). Right: Mr.
Ripert (Under Secretary-General, Department of International Economic and Social Affairs). Centre: Mrs. Z. L. N’ Kanza (Executive Secretary of Iypd).”
NEWS FROM THE IYDP SECRETARIAT. International Year for Disabled Persons 1981 Full Participation and Equality, n. 2, p. 45, Aug. 1980. Subtitle: Cover of the book of
the UN on the IYDP, August /1980
Image. UN Logo: “International Year for Disabled Persons 1981”
1976: Proclamation of the IYDP
The 102nd plenary session of the General Assembly of the United Nations
proclaimed 1981 as the “International Year for Disabled Persons” (IYDP), through
Resolution 31/123, of 12/16/1976. The official name adopted in the resolution and in all the
other documents prepared and distributed by the United Nations on the IYDP in the period
from 1976 to 1979 was “International Year for Disabled Persons”. However, the preposition
“for” has two translations into Portuguese: “para” and “por”. “Para” indicates direction of
something (international year) for someone (disabled persons)). “Por” indicates motivation:
doing something for someone. So, in addition to being translated as the “Ano Internacional
para Pessoas Deficientes”, the Portuguese translation could also be “Ano Internacional por
Pessoas Deficientes”.
However, both translations and the expression in English raised protests,
because they reflected a condescending attitude, a complacent, benevolent attitude which the disabled persons no longer accepted. Suggestions that were heard during that
period led the United Nations to change the name.
In 1980, the name was changed to “International Year for Disabled Persons”. The
preposition “of” indicates origin, starting point (where did it come from? from the disabled?
and possession (whose is it? Of the disabled persons.). Some examples of how the new
name is used include newsletters on the IYDP, the booklets “News from the IYDP
Secretariat” and the symbol of the IYDP.
1977: The Rights of the Deaf-Blind
The Helen Keller World Conference on Services for Deaf-Blind Youngsters and
Adults, held in New York, USA, adopted the Declaration of Deaf-Blind Persons on
9/16//1977. This document was signed by several non-governmental organizations
linked to deaf-blind persons. At its first session in 1979, the UN´s Social and Economic
Council decided to submit this declaration to the 34th plenary session of the General
Assembly as part of the documentation of the IYDP. (UNITED NATIONS, 1979)
1979: Divulging of the IYDP symbol
Image. Logo of the UN for IYDP.
In 1979, the UN launched the official book to announce the activities to be held
during the IYDP. The symbol of the IYDP represents two people, one of them disabled
and the other one not. They are holding hands, in an attitude of mutual solidarity and
support on an equal level. Two laurel branches like the ones that surround the UN
symbol, surround the two figures. The fact that the disabled person and the normal
person are positioned at the same level attracted much attention, because up to that
time society had always viewed disabled persons as being inferior to other person.
1979: Slogan of the IYDP
When the UN proclaimed the IYDP, the slogan was just Full Participation.
(UNITED NATIONS, 1977)
As a result of various manifestations, the UN, through Resolution 34/154, of
12/17/1979, decided to change the original slogan to Full Participation and Equality.
The same Resolution led to the adoption of the AIPD Action Plan. To explain why the
slogan of the IYDP hád been expanded, the General Assembly emphasized that Full
Participation meant “participation of disabled persons in all aspects of life in society
and in the development of the societies in which they live”; and that Equality referred to
"life conditions equal to those of other citizens from the same society and equal sharing
of better life conditions resulting from social and economic development”. In addition,
“these concepts should be applied in equal manner and with equal urgency in all
countries, regardless of the level of development of each country”. (UNITED NATIONS,
1980).
1979: The advent of the movement and the IYDP
Up to 1979, associations representing disabled persons acted in isolated
manner and separately from each other. Their objectives were more strongly focused on
the personal survival of the members or the disabled persons the associations provided
assistance to. In contrast to this situation, the first organization meeting of the movement
for the rights of persons with disabilities was held in São Paulo in 1979.
Highly motivated people attended the first meeting. Their objective was to
organize the movement to clamor for the rights of persons with disabilities. In a few
months, the monthly meetings aroused the interest of more than 50 people.
This protest movement hád already been active for some weeks when we
included the United Nations Action Plan for the AIPD. I hád been given a grant from
the United Nations in 1966 and 1967; ever since then, I hád received publications
from the UN. Otto Marques da Silva hád been a UN employee in New York and also
received a lot of information. We passed all this information to the other activists. In
1979, when we started holding the meetings, we would take all the material sent by
the UN to discuss it: “Look, 1981 will be the International Year for Disabled Persons.”
We hád already decided to start the movement when, in 1979, we heard that 1981
would be the International Year. I think that we were the pioneers in Brazil in terms of
spreading the word about the International Year, first in São Paulo and then in the rest
of the country. (SASSAKI, in LANNA JR, 2010, p. 409)
Image.. Several people at a meeting, sitting in a circle. Maria de Lourdes Guarda is lying on the stretcher. Subtitle: David Bastos, Sergio Del Grande, José Bistafa, Evaldo Doin,
Heloísa Chagas, Tom Frist, Lourdes Guarda and Vinicius Andrade.Photo: R.Sassaki.
Image.Two men sitting on classroom chairs. Subtitle: Tom Frist and Robinson de Carvalho. Photo: R.Sassaki.
1980: First debate on the IYDP
On 5/10/1980, the "Coalizão Pró-Federação Nacional de Entidades de Pessoas
Deficientes" (the Coalition for the National Federation of Disabled Persons) held the first
specific event to discuss the UN Action Plan for the AIPD.
Image.. Three people, a man and two women sitting on wheelchairs and holding pen and paper. Subtitle: Isaura Pozzatti, Candido Melo and Heloísa Chagas.Photo: R.Sassaki.
Image. Photo of meeting. Various disabled persons sitting in a circle. Subtitle: Maria de Lourdes Guarda, Isaura Helena Pozzatti, Rui Bianchi do Nascimento, Otto Marques da
Silva, José Evaldo de Melo Doin, Candido Pinto de Melo, Sergio Del Grande, Araci Nallin, Lia Crespo, Kico Crespo, Luiz Alfabeti (standing, (unidentified woman), Thomas
Ferran Frist, João Bistafa, (maybe) Heloísa Chagas, Claudio Vereza. Photo: R.Sassaki.
1980: National Commission of the IYDP
The Brazilian Government enacted Decree 84.919, of 7/15/1980, which created
the National Commission of the International Year for Disabled Persons and appointed
members to this commission. Paradoxically, no disabled person hád been appointed to
the commission and no disabled person represented all the disabled persons, estimated
at totaling 12 million people. In view of this absurdity, the "Coalizão Pró-Federação
Nacional de Entidades de Pessoas Deficientes" (the Coalition for the National
Federation of Disabled Persons) held a meeting in Brasilia from October 22 to October
25, 1980, and decided to personally deliver a protest letter to the then President of the
Republic, João Batista Oliveira Figueiredo.
Photo of basketball court at the University of Brasília. Hundreds of people are sitting next to each other; several of them are sitting in wheelchairs. A long wooden ramp takes up
most of the back wall. Subtitle: Opening Session of the National Meeting in Brasilia. Photo: R.Sassaki
The letter was worded as follows: “... resolves to request that Your Excellency
take the legal measures to ensure the inclusion of representatives of this "Comissão
Nacional do Ano Internacional das Pessoas Deficientes” (National Committeee of the
International Year of Persons with Disabilities). The photos show the signatures of the
leaders and of Cândido Pinto de Melo:
Images.Black and wWhite photo of Cândido Pinto de Melo; and Page with the signatures to the Letter of Protest forwarded to the President of the Republic, , João Batista Oliveira
Figueiredo.
Brazilian Association of the Physically Disabled (SP)
Association of the Persons with Motor Disabilities (PE)
Rio Grande do Sul Association of the Paralytics and the Amputees (RS)
Center for the Integration of the Disabled (SP)
Society of the Visually Impaired in Brazil (SP)
Association of the Physically Disabled of Brasilia (DF)
Association of the Visually Impaired and Friends (SP)
Association of the Integration of the Disabled (SP)
Association of the Physically Disabled of the State of Paraná (PR)
Association of the Physically Disabled of the State of Mato Grosso do Sul (MS)
Christian Fraternity of the Ill and Physically Disabled (PE)
Friends of the Brazilian Association of Rehabilitation (RJ)
Christian Fraternity of the Ill and Physically Disabled (RS)
Christian Fraternity of the Ill and Physically Disabled (SP)
Association for the Assistance of the Physically Disabled (SP)
Society of the Friends of the Physically Disabled (RJ)
National Organization of Reabilitation of and Assistance to the Mentally Disabled (RS)
Christian Fraternity of the Ill and Physically Disabled (SC)
Brazilian Association of the Physically and Sensorially Disabled (SC)
Association of the Physically Disabled of the State of (RJ)
To His Excellency
General João Batista Oliveira Figueiredo
The Honorable President of the Federative Republic of Brazil
Subtitle: All the leading newspapers published this letter. The “Movimento pelos Direitos das Pessoas Deficientes” (MDPD) movement also piublicized this event.
Image: O Globo newspaper, August 11, 1980; next to the newspaper article, detail of the Boletim MDPD, bulletin 1981 Year 1– nº 1.
O GLOBO - YEAR LVI – Rio de Janeiro, Monday, August 11, 1980 – Nº 17.094
Persons with disabilities ask Figueiredo to change Decree
SÃO PAULO (O GLOBO) – One of the results of the meeting held by the Coalizão Pró-Federação
Nacional das Pessoas Deficientes coalition, which ended yesterday, was to prepare a document to be
submitted to President João Figueiredo. The document includes a request for changes in Decree 84.919,
which establishes the National Commission for the International Year of Persons with Disabilities.
According to Heloisa Chagas, of the “Movimento da Pessoa Deficiente do Estado de São Paulo”
(Movement of the Disabled Persons of the State of São Paulo), the United Nations, when establishing that
1981 was to be the International Year of Persons with Disabilities, recommended that governments create
committees for the event and include a person with disability as a member of the committee.
— The decree does not mention the inclusion of a representative of disabled persons – and this is wrong, in
our opinion. Our request is not to include any disabled person, but rather to include a member of the
coalition, Heloisa explained.
She justified the request by stating that the Coalition is the only nationwide entity that congregates
representatives of disabled persons and included 23 organizations from 9 states and from the Federal
District. .
Paulo Roberto Guimarães Moreira, of the “Associação dos Deficientes Físicos do Estado do Rio de
Janeiro” (the Association of the Physically Disabled of the State of Rio de Janeiro), said that the main
objective of the Coalition is for the recognition of the rights of the disabled:
— Our rights must be respected. We don´t want any favors and we don´t want any pity. We only want to
have the same rights as those of ordinary citizens. Even though we pay taxes and social charges just like
everybody else, most of us find it difficult to move around, as for example, to get on a bus.
, Messias Tavares de Souza, of the “Fraternidade Cristão do Doente e Deficientes Físicos” (Christian
Fraternity of the Sick and of the Physically Disabled) organization, also participated in the meeting. He
explained that the Coalition is open to any interested entity. He made an appeal to interested parties,
asking them to write to Post Office Box 11.180, in Brasília, to get information on the organization.
Boletim MDPD bulletin, 1981 Year 1 – nº 1.
Our protest
At our last general meeting., held on 2/8, the plenary session protested strongly against the behavior of the
president of the national committee of the IYDP, who barely acknowledged the Persons with Disability and
refused to meet with the Coordinators of the MDPD who attended the opening session of the IYDP in the
city of Bauru, State of São Paulo. In view of these events, and of past events, which reflect the way in
which this Committee was created, without the participation of representatives of Disabled Persons, the
plenary session, by majority vote, resolved to reject the referred Committee. However, with the objective of
extending the debate, the Coordinators decided to include this issue in the agenda for the next meeting
03/21 FMU - Av. Stº Amaro), to define the form in which this decision will be dealt with.”
This action was successful. The Decree was modified to include José Gomes
Blanco, representative of the "Coalizão Nacional de Entidades de Pessoas Deficientes"
(the National Coalition of Disabled Persons). He was appointed as a consultant, as
attested to by the Final Report of the National Commission of the IYDP. This was a
victory achieved by the disabled persons segment.
Image. Detail of the Final Report of the National Commission of the IYDP.
Consultants
Doutor Francisco José da Costa Almeida
Advisor to the General Director of the Centro Nacional de Educação Especial Center of the Ministry of Education – MEC
Doutor Hilton Baptista
Vice-President of Rehabilitation International for Latin America
José Gomes Blanco
Representative of the “Coalizão Nacional de Entidades de Pessoas Deficientes” coalition
Coronel Luiz Gonzaga de Barcellos Cerqueira
1980: Brazilian Mission to the United Nations
Dorina de Gouveia Nowill represented the Brazilian Delegation at the General
Assembly of the United Nations in October 1980. At the time, she spoke about the IYDP;
her speech detailed the concepts of " Full Participation" and " Quality." The speech, in
print form and version in Braille, has been carefully preserved and is part of the IYDP
collection (photo below).
Image. Cover of the publication.
Brazilian Mission to the United Nations
Iii Committee
Statement by the Adviser of the Delegation of Brazil Ms. Dorina Nowill
On Item 79: International Year For The Disabled In The Thirty-Fifth Session Of The General Assembly
New York, October 1980
747 Third Avenue – New York, N.Y. 10017
1980: First city in Brazil to open the IYDP
“The first opening event of the IYDP was held in the city of Ourinhos, State of
São Paulo, on December 12, 1980. The objective was to prepare for the following year’s
International Year for Disabled Persons. Romeu Sassaki gave the keynote speech”.
(CRESPO, 2009, p. 129-130)
Image. Opening session of the IYDP, in Ourinhos, with four of the participants. Behind the table is a banner with the UN logo: “1981 International Year for Disabled Persons –
Full Participation and Equality”. Subtitle: Romeu Sassaki gives the opening speech of the IYDP.
During the IYDP
The name of the IYDP was one of the aspects that hád a great impact on
society.
Knowledge about the Declaration of the Rights of Mentally Disabled Persons
(Resolution 2.856-XXVI, of 12/20/1971) and of the Declaration of the Rights of Disabled
Persons (Resolution 3.447-XXX, of 12/ 9/1975; Resolution 31/82, of 12/13/1976, on the
implementation of this declaration) was restricted to specific segments. In contrast, the
name "International Year for Disabled Persons" was broadly and constantly divulged by
the entire media, and thus raised the attention of society to the words "Disabled
Persons." We were constantly contacted by journalists and other professionals who
wanted to publish interviews and articles. In perplexed voices , they would ask us: "So
the disabled are persons? Why?”
That was not strange to us, but it was strange to them, because up to that time
society had always referred to persons with disabilities without adding the word
"persons." For example, they would refer to us as " the disabled," the " impaired," the
invalids," " the lame," " the mentally retarded," " the defective," " the pitiful," " the
subnormal," " the physically or mentally challenged," " the retarded," and so on.
1981: Architectural accessibility
During the IYDP, the Trade Federation of the State of São Paulo invited the
"Núcleo de Integração de Deficientes/NID" (Center for the Integration of the Disabled )
to hold a training program on architectural accessibility for all the architects and
engineers working for the trade association. The objective was to adapt the existing
buildings of the "Serviço Social do Comércio" (Sesc) organization and ask them to
design their future buildings with access ways for disabled persons.
Image. In a big room, , 16 people are sitting around an oval-shaped table. Subtitle
: Lia Crespo, Romeu Sassaki, Alice Mory and Nia Corrêa training engineers and architects. Photo: Sesc.
1981: A historical ramp
A pioneering event related to the IYDP was held in São Paulo in July 1981. The
"Movimento pelos Direitos das Pessoas Deficientes "/MDPD (Movement for the Rights of
Persons with Disabilities) was able to convince Mario Chanie, the city’s the then Secretary of
Culture to authorize the construction of a temporary wooden ramp at the entrance of São
Paulo’s Teatro Municipal concert hall. Even though the ramp was temporary, it was a victory
because it was the only way that disabled persons could attend the performance by orchestra
conductor Isaac Karabtchevsky. Actor Renato Consorte was one of our major supporters in
this endeavor. He introduced us to the secretary and helped us convince him to build the
ramp.
Image. Photo. Outdoor detail of the Teatro Municipal de São Pauloc concert hall. Iron door, stairway and ramp. A man in a wheelchair is going down the ramp with the help of
another man, next to a person going down the stairs. Subtitle: temporary ramp Teatro Municipal. Photo: R.Sassaki
1981: The IYDP in São Paulo
The São Paulo State Government appointed 17 members to the "Comissão
Estadual de Apoio e Estímulo ao Desenvolvimento" (State Committeee for the Support
and Fostering of Development) for the support of the International Year for Disabled
Persons. Eleven of the members represented government entities, four members
represented private rehabilitation institutions, one member represented the "Centro de
Desenvolvimento de Recursos para Integração Social" (Center for the Development of
Resources for Social Integration) (Luís Celso Marcondes de Moura) and one member
represented the "Movimento pelos Direitos das Pessoas Deficientes" movement (José
Evaldo de Mello Doin).
The commission worked very hard to organize theme meetings.
The
commission also prepared material to divulge the international year, collecting ideas and
solutions, spreading information, etc. Te result was positive in every way, and all the
actions were included in the final report.
Image. Cover of the official report, with the UN´s logo for the IYDP. Information on the cover: Office of the Ch8ef of Staff. Report prepared by the “Comissão Estadual de Apoio
e Estímulo ao Desenvolvimento do Ano Internacional das Pessoas Deficientes” s state commission. Subtitle: Cover of the report prepared by the São Paulo State commission
The first "1º Encontro Estadual de Pessoas Deficientes" (the 1st State Meeting
Meeting of Persons with Disabilities) from the State of São Paulo was held on 9/12/1981.
Various leaders from the capital city and from the state of São Paulo attended the
meeting, along with representatives from other states.
Image. Two photos. On the left, people sitting in a circle. On the right, big room full of people. Four people posing for the photograph. Subtitle: Activists Luís Celso de Moura,
Carlos Burle, Thereza Stummer, Romeu Sassaki
1981: The MDPD in the IYDP
The "Movimento pelos Direitos das Pessoas Deficientes" (MDPD) movement
organized the official opening session of the IYDP, which took place at the São Paulo
City Council in March 1981. At the beginning of the session, blind activist Odete Cláudia
Nascimento read the text, in Braille, of the UN´s Declaration of the Rights of Disabled
Persons. She was greatly applauded at the end. The audience included representatives
from most of the States in Brazil. The president of the MDPD, Cândido Pinto de Melo,
coordinated the round table discussions. Round table participants included Judge
Renato Talli, legal scholar Dalmo Dallari CNBB secretary Cardinal Dom Luciano
Mendes, and other authorities. The coordinator read a letter from the UN´s resident
representative in Brazil, P. Koenz, who provided support of the event and approved the
Carta-Programa do MDPD official document.
Image. Newspaper photo. Information on the photo: “The official opening session in Brazil of the International Year for Disabled Persons was held this weekend”. Subtitle: The
City Council hall was filled to capacity for the opening ceremony.
1981: The IYDP in the city of Bauru
The Sorri-Bauru center, a three-thousand meter facility, was inaugurated in the
city of Bauru, State of São Paulo, on January 17, 1981.
In Bauru, the opening session of the IYDP was held at that time. Government
authorities and hundreds of people from surrounding towns attended the event.
Image. Photo. Detail of the IYDP opening session in Bauru. Behind the people is the o IYDP banner. Subtitle: Roger Ackley, president of the ALM (USA); Helena Bandeira de
Figueiredo, president of the National Commission for the IYDP; Oswaldo Sbeghen, mayor of Bauru; Silas Braga Reis, president of Sorri-Bauru; Hein Schaapveld,Duth
ambassador to Brazil and Abrahim Dabus, state congressman. Photo: Jornal da Sorri, year I, n.1
Image. Photo. Approximately twenty people pose for a photo outdoors. Subtitle: Leaders of disabled persons´ movements from the State of São Paulo.
1981: The IYDP on TV
On 12/31/80, Rede Globo TV network produced and broadcast vignettes on the
opening of the International Year for Disabled Persons. I had the opportunity of
analyzing the vignettes and publish them for use by the MDPD movement and by
journalism students. According to the Sundberg Declaration, most of the films did not
achieve the objective of educating TV viewers.
Image. Cover of the publication. Illustration of a person sitting ina wheelchair in front of a stairway. Title: “Pessoas Deficientes e TV: Análise de uma reportagem”. Includes
IYDP logo. Subtitle: Booklet containing analysys of vignettes
1981: The IYDP and humor
In order to illustrate the IYDP, I highlighted two cartoons - among the thousands
of cartoons published throughout 1981, reflecting the situation of disabled persons in
Brazil. The first cartoon, authored by Jota, depicts an army of media professionals
interviewing a disabled person under powerful spotlights, while a child who was
approaching the disabled person to sell him some candy is pushed away by a journalist
who says " Don´t even try! Your year has already ended!", referring to the year 1979,
which hád been declared as International Children’s Year. The cartoon predicted that
disabled persons, in the spotlight during the IYDP, would soon be forgotten, just like
children were after their year hád ended.
Image. Cartoon. Subtitle: Cartuonist: Jota 1981
The other cartoon, authored by Ricardo Ferraz, an activist in the disabled
persons movement, depicts disabled persons prevented from participating actively in
society because of architectural, cultural, and systemic barriers.
Image. Cartoon. A man sitting in a wheelchair is in front of a sulpture of the word “NO.” The sculpture is taller than the man. Subtitle: Cartoonist: Ricardo Ferraz 1981
1981: The role of the media
In 1981, Unesco approved the Sundberg Declaration, Article 10 of which
states as follows: "In view of the media’s influence on public attitudes, and with a view to
increasing the level of public awareness and solidarity, the content of the information
disseminated by the media as well as the training of media staff must include aspects
corresponding to the needs and interests of disabled persons and prepared in
consultation with their associations."
The document was named in honor of Nils-Ivar Sundberg, who hád passed away that
year, after having been the director of Unesco for 13 consecutive years. He hád always
shown interest in the situation of disabled persons (Unesco, 1981).
1981: The media publishing news about the activities of
the AIPD
As of 1980, the media was always busy preparing news and articles (in
newspapers, on radio and on television) on the celebration of the AIPD. Below is a small
sample of the huge number of such news and articles:
• “In 1981, the attention of the UN is focused on 400 million” (Jornal do Brasil, 1/24/80).
• “1981, the ‘International Year for Disabled Persons’” (Gazeta da Zona Norte, 3/16/80).
• “Physically disabled persons are still discriminated in Brazil” (Folha de S.Paulo, 4/27/80).
• “In SP, 25 persons mutilated per day” (Folha de S.Paulo, 4/27/80).
• “Disabled persons meet to prepare for national meeting in October” (Correio Braziliense,
6/24/80).
“Problems
of physically disabled persons debated in SP” (Folha de S.Paulo, 7/22/80).
•
• “Physically disabled persons: 12 million forgotten persons complaining against
discrimination” (Diário Popular, 7/22/80).
• “These men request equality” (Jornal da Tarde, 7/22/80).
• “Congress discusses proposals” (Folha de S.Paulo, 7/23/80).
• “Congress ends session with recommendations on disabled persons” (Folha de S.Paulo,
7/24/80).
• “Physically disabled persons: The battle for rehabilitation goes on, after discussions on all
the difficulties” (Diário Popular, 7/24/80).
• “The disabled and discrimination” (O Estado de S.Paulo, 7/24/80).
• “Physically disabled persons battle for integration in society” (Diário Popular, 8/10/80).
• “Disabled persons ask Figueiredo to change Decree” (O Globo, 8/11/80).
• “ 28 million paraplegics clamor for their rights” (A Gazeta, 9/28/80).
• “Disabled persons ask for the end of discrimination” (O Estado de S.Paulo, 10/19/80).
• “In the states, a scenario of disregard” (O Estado de S.Paulo, 1019/80).
• “Goal: national federation” (O Estado de S.Paulo, 10/19/80).
• “Disabled persons want to participate in government commission” (Folha de S.Paulo,
10/25/80).
• “The blind: Getting ready for the International Year for Disabled Persons” (Jornal da
Tarde, 11/28/80).
• “Movement approves program for the protection of disabled persons” (O Globo, 12/7/80).
• “The Disabled approve the action plans for 1981” (O Estado de S.Paulo, 12/7/80).
• “Paraplegics ask for government help to remove obstacles” (A Gazeta, 12/7/80).
• “Disabled persons want respect and Justice” (Diário Popular, 12/7/80).
• “81, the Year of the Physically Disabled Persons” (O Estado de S.Paulo, 12/16/80).
• “Disabled persons, global plan with Ludwig” (O Estado de S.Paulo, 12/19/80).
• “Commission prepares plan for the Year of Disabled Persons” (Folha de S.Paulo,
12/19/80).
• “A one-year battle for the rights of the disabled” (Folha de S.Paulo, 1/1/81).
“A symbol for 1981, the International Year for Disabled Persons” (Jornal da Tarde,
1/2/81).
“This
is the beginning of a battle-filled year for the disabled” (Shopping News, 1/4/81).
•
• “It is a question of rights” (Folha de S.Paulo, 1/5/81).
•
• “The Disabled” (Folha de S.Paulo, 1/9/81).
• “1981 International Year for Disabled Persons” (Página Um, 1/10/81).
• “Disabled persons battle to end paternalism” (Folha de S.Paulo, 1/14/81).
• “Year of the disabled persons” (Folha de S.Paulo, 1/16/81).
• “Promoting the International Year for Disabled Persons in Ribeirão Preto”
(A Cidade, 1/20/81).
• “Physically disabled persons: neither useless nor pitiful” (Folhetin, Folha de S.Paulo,
1/25/81).
• “A message for awareness in the year of disabled persons” (Folha de S.Paulo, 1/25/81).
• “And now, the political battle” (Folhetin, Folha de S.Paulo, 1/25/81).
• “The battle of the windmill” (Folhetim, Folha de S.Paulo, 1/25/81).
• “Mais iguais” (Folha de S.Paulo, 28/1/81).
• “Disabled persons accuse national commission” (Folha de S.Paulo, 1/28/81).
• “12 million Brazilians are physically disabled” (O Recado, 2/12/81).
• “Disabled persons intensify their battle for their rights” (Folha de S.Paulo, 2/14/81).
• “Disabled persons show courage and bravery in the struggle for their rights” (Gazeta de
Santo Amaro, 2/21/81).
• “Independence for the disabled persons” (Folha de S.Paulo, 2/28/81).
• “No major achievement” (Folha de S.Paulo, 3/3/81).
• “Campaign for the rights of the disabled” (Jornal da Tarde, 3/13/81).
• “Disabled persons will announce program for this year” (Folha de S.Paulo, 3/13/81).
• “International Year: 1981, of Disabled Persons” (Diário Nippak, 13/3/81).
• “Disabled persons intensify the battle for their rights” (Folha de S.Paulo, 3/14/81).
• “Disabled persons begin campaign” (O Estado de S.Paulo, 3/14/81).
• “A physical world which is difficult to deal with every day” (Folha de S.Paulo, 3/14/81).
• “The blind unite to bring down prejudice” (Shopping News, 3/15/81).
• “Declaration of Rights opens the Year of Disabled Persons” (Folha de S.Paulo, 3/15/81).
• “The NID challenges Globo” (Folhetim, Folha de S.Paulo, 3/15/81).
• “The Year of Disabled Persons is officially opened” (O Estado de S.Paulo, 3/15/81).
• “Disabled persons don´t want concessions” (Diário Popular, 3/15/81).
• “Defending the disabled: the official opening of the International Year for Disabled
Persons in Brazil was held this weekend” (Jornal da Tarde, 3/16/81).
• “Disabled persons begin International Year” (Folha da Tarde, 3/16/81).
• “Disabled persons organize protest march” (A Tribuna, 3/21/81).
• “Disabled persons organize protest march for more integration” (A Gazeta,3/21/81).
• “Disabled persons want end to discrimination” (A Tribuna,3/21/81).
• “Physically disabled persons organize protest march and rally” (A Gazeta,3/21/81).
• “Group wants job related discrimination against the blind to end” (Folha de S. Paulo,
3/22/81).
• “Disabled persons, get mobilized” (Folha de S. Paulo, 3/25/81).
“disabled persons are not asking for favors; they only want equal opportunities”
(Dirigente Industrial, São Paulo, v. XXII, n.4, April/81).
“Disabled
persons, join forces” (O Estado de S. Paulo, 4/12/81).
•
• “Disabled persons: professor rejects discrimination” (Folha da Tarde, 5/12/81).
•
• “Disabled persons will hold 1st Congress” (Folha de S. Paulo, 8/14/81).
• “Disabled persons see the country as being aware of the issue” (O Estado de S. Paulo,
3/23/82).
1981: The AIPD ends
As the year 1981 came to a close, we realized that a 12-month period was too
short to carry out all the actions planned for the IYDP. But we also reminded ourselves
that the IYDP had never proposed to solve all the problems related to the situation of
disabled persons in the course of one year.
In this sense, we confirmed that the main purpose of the IYDP had been fully
achieved; that is, we had been able to raise the awareness of society to the tough
and complex reality that disabled persons had to deal with. We had also been able to
make society aware of its responsibility to change this reality. In 1981, we transformed
the IYDP into a solid ground from which the long process of reconstructing society
began and was to continue for many decades. During the IYDP, we learned to
identify, analyze, balance, and appropriately adjust the challenges presented by
disabled persons to society as a whole.
After the AIPD
The IYDP resulted in significant achievements, which became important for a
number of objectives: to continue the medium and long-term actions begun in 1981;
conclude unfinished actions; begin actions where no actions had been contemplated in
1981, and many other objectives. So many issues had been raised during the IYDP that
nobody had any doubts that many years or decades were necessary to address them.
Solutions in the form of documents and actions will be focused on part III of this
chapter.
1982: World Action Program
On 12/3/1982, the UN General Assembly adopted Resolution 37/52, which
instituted the World Action Program for Persons with Disabilities. One of the densest
document produced by the United Nations, the Program established guidelines for
world strategies to promote " full participation" and "equality" of disabled persons in
the social life and development of each country. This was the first direct re sult of the
actions of the IYDP.
The World Action Program for Persons with Disabilities was considered as
being very advanced for those times. Twenty years later, the document was one of
the reference sources for the preparation of the draft of the Convention on the rights
of Persons with Disabilities (adopted 24 years later by the UN General Assembly.)
Indeed, the draft included such concepts as equal opportunities and the relationship
between the disability and the environment.
1983-1992: Decade of Persons with Disabilities
Another leading result of the IYDP was the proclamation of the United Nations
Decade of Persons with Disability, established through Resolution 37/53, of 12/3/1982.
The Decade was the time line for the implementation of the World Action Program for
Persons with Disabilities.
Below are the words of the then Secretary General of the UN, Javier Perez de
Cuellar, in a press release published on 4/19/1983:
“This proclamation emphasizes the commitment of the international community to
continue the impetus provided by the International Year for Persons with Disabilities
in 1981, for the prevention of disabilities and for the granting of equal opportunities to
persons with disability, as well as their insertion into society. Our responsibility is to
encourage and help persons with disability to lead a meaningful and useful life . This
cannot be viewed as a charitable action; it must be viewed as the disabled persons´
right. Society as a whole can only progress if each one of its members is g ranted full
recognition and respect of his or her dignity and inherent values ”. (CUELLAR, 1983)
1985: Creation of the CEAPD
The first Board of the "Conselho Estadual para Assuntos da Pessoa Deficiente"
(CEAPD), (the São Paulo State Council for Issues of Persons with Disabilities) took
office on /2/1/1985, at the Palácio dos Bandeirantes, the seat of the São Paulo state
Government.
Image. Photo. Six members seated around the table during the opening session of the CEAPD. Subtitle: Activist Araci Nallin is speaking. Photo: R.Sassaki
Activists, such as Araci Nallin, battling for the rights of the disabled, were fully
aware that their participation in the Council was directly related to the proposals
established in the UN´s World Action Program for Persons with Disability, as illustrated
below:
“Participation of persons with disability in the decision making process. (91) Member States
should increase their assistance of disabled persons and help them organize and coordinate the
representation of the interests and concerns of disabled persons . Member States should actively
seek out and encourage in every possible way the development of organizations composed of or
representing disabled persons. Such organizations, in whose membership and governing bodies
disabled persons, or, in some cases, relatives, have a decisive influence exist in many countries.
Many of them have not the means to assert themselves and fight for their rights. Member States
should establish direct contacts with such organizations and provide channels for them to influence
government policies and decisions in all areas that concern them. Member States should give the
necessary financial support to organizations of disabled persons for this purpose. Organizations and
other bodies at all levels should ensure that disabled persons can participate in their activities to the
fullest extent possible.”. (UNITED NATIONS, 2001, p. 39)
1988: Persons with Disability in the new Constitution
We participated actively in the drawing up of the new Constitution. Activists in
the disabled persons movement worked throughout 1987 on a nationwide scope. The
Bill of the Constitution, prepared by the Lower Chamber of Congress, had already been
drawn up in 1986, without our participation.
Image. Jornal Etapa newspaper, 1987.
“Bill submitted by Messias to the Constitutional Assembly”. Black and white photograph
of Messias Tavares, with the subtitle: “Messias Tavares de Souza, Coordinator of the
ONEDEF was appointed to defend the bill related to disabled persons.”
The Bill prepared by the “Movimento das Pessoas Portadoras de Deficiências”
movement was submitted to the Constitutional Assembly in Brasilia on August 28 by the
Coordinator of the ONEDEF, who had been appointed to submit the document. At that
time, Messias Tavares, presented the following speech:
HISTORICAL PERSPECTIVE OF CITIZENSHIP.
To His Excellency, Representative Ulysses Guimarães – President of the Constitutional
Assembly, Honorable Congressmen, Members of the Constitutional Assembly,
government authorities, Ladies and Gentlemen and fellow activists.
So far, all our efforts to achieve social insertion, to obtain recognition of our rights as
citizens and grant us contemporary dignity have been blocked by the insensitivity of a
hostile, violent, and senseless society. Once again, we have witnessed that our
achievements moved some steps forward and some steps backwards; Brazilian society,
represented by its authorities, truly refuses to understand the importance of our struggle,
which is not only related to us, but to all of society.
We would like to point out that our battle for citizenship is not set apart from any other
equally discriminated segment. We would like to draw attention to the fact that no
person surrounded by semi-citizens can be a citizen. As Hegel stated, “It is impossible to
be happy unless others are happy.”
The ancient Greek Polis based citizenship on slavery, where all citizens were equal, but
not all people are citizens. The Roman Polis was based on the same concept. The feudal
world has no cities during 1000 years of dark ages and slow accumulation of capital. The
burgh, the result of trades imposed by this thousand-year accumulation, creates the
individual, the bourgeois family, the citizen who can come and go as he pleases, in this
territory without an owner. It is in this territory, burgh or city, that bourgeoisie citizenship
is exerted – the abstract freedom achieved by England’s Industrial Revolution, in
economic terms, and by the French political revolution after the Storming of the Bastille.
This is abstract freedom, because a person can be someone or have something, only on
paper, or in the imagination, but the production and distribution mode does not allow this
to actually happen. The socialist citizen is not a slave of capitalist particularities; he is a
slave of the universal nature of the State. One must identify, in self-managed socialism or
in social capitalist welfare, respect of identity and of differences. The Constitution must
be built on the basis of the contemporary need to respect the human being, in his
universal, particular, and singular aspects, under penalty of disrespecting the citizen in all
dimensions.
This is why we, the disabled persons, accept that we are equal, and, as such, demand
respect o four particularities and singularities, which is not a privilege that belongs to us,
but is an attribute specific to all beings.
THE CONSTITUTION AND PERSONS WITH DISABILITY
The organization of aid organizations, of a paternalistic nature, in Brazil began more than
30 years ago. Such organization has historically played the role, and still does, of
providing relief to a heavy, collective awareness of the “feudal” and emerging capitalist
system, provoked by progressive poverty and increasing loss of the value of the human
being, in favor of glorifying the machine and capital.
In the course of the 1950s and 1960s, the abject poverty caused by poverty and
deficiencies gets organized in the big cities. Veiled almsgiving or underemployment,
such as the organized sale of candy, illustrate the early organization-related initiatives,
without freedom, or existing thanks to exploitation, a situation which still lingers on.
In the 1970s, persons with disability, as well as Negroes and women, and other civil
society groups, decide to get organized, as a means of survival. The abandonment and
atomization which minority groups undergo, drop to unbearable levels. This leads to the
advent, in politicized regions of the country, of associations headed by rare leaders, who,
still using leisure as an excuse, promote awareness. Regional discussions begin, yet no
association is aware of the existence of other similar associations.
From 1979 onwards, national associations of the blind, of persons afflicted with leprosy,
of the physically disabled, of the stomatized deaf, of the persons afflicted with
thalassemia, diabetes, chronic renal condition, cerebral palsy, among other disabilities,
are established. However, there is no general representation of these segments, as
response to a need which has become palpable.
Yet some accomplishments are achieved by the government, at various levels and of
various kinds. These actions herald the beginning of a systematic achievement in
response to raised awareness of the need to gain empowerment to change the existing
reality.
The integrated work between the national movement of persons with disability and some
government authorities is the basis for work on the Constitution. A nationwide debate is
held, with the objective of drawing up the Constitution.
The first controversy is around the way in which the Constitution should address the
issue. Should there be a special place in which everything related to this segment is
contemplated, thus creating major sidelining? Or should specific issues be contemplated
in each article or theme related to them? The conservatives, the reactionary, and the
misinformed clamored for the “convenience” of “special protections;” the progressives
clamored for identity and difference-related compatibilities, dealt with on a case by case
basis.
The “III Reunião de Entidades Nacionais, Conselhos e Coordenadorias das Pessoas
Portadoras de Deficiência” (the Third Meeting of National Entities, Committees, and
Coordination Entities of Persons with Disabilities) was held in the city of Belo Horizonte,
in October, 1986. Two proposals, which had been discussed at length, were submitted at
the plenary session. One proposal had been prepared under the coordination of the
Cenesp – Centro de Ensino Especial special learning institute and of the Instituto
Benjamin Constant institute, both of which represented the movement of the blind. The
second proposal had been coordinated by the MDPD – Movimento pelos Direitos das
Pessoas Deficientes de São Paulo movement and supported by the Programa de Cultura e
Portadores de Deficiência (Cultural Program for Persons with Disabilities) of the
Ministry of Culture, which had set the tone of the national movement of persons with
disability. The merger of these proposals, worked on in more detail at the plenary session,
led to a 14-item document with numerous signatories and which was extensively
accepted and finally ratified in Brasilia at the “IV Reunião de Entidades Nacionais,
Conselhos e Coordenadorias de Pessoas Portadoras de Deficiência” (Fourth Meeting of
National Entities, Committees, and Coordination Entities of Persons with Disabilities)
held in March, 1987. This document, which was to have been submitted to the chairman
of the National Constitutional Assembly, was officially delivered to Congressional
Representative Ivo Lech, the chairman of the Subcommittee of Negroes, Indigenous
Populations, Disabled Persons, and Minorities, due to the absence of Congressional
Representative Ulysses Guimarães.
The tone of the initial Report prepared by the Subcommittee referred to above was
similar to that of the Federação Nacional das Apaes – Associações de Pais e Amigos dos
Excepcionais (Federation of the Friends of the Mentally Disabled). The dispute was
between the paternalistic and assistance-related past and the current battle for bourgeois
rights necessary for the exercising of citizenship, and the possibility of the disabled
becoming subjects, as well as objects, of government and society’s policies.
Once again, prominent leaders of the national movement of persons with disability went
to Brasília to put pressure on the lawmakers, to clarify their arguments, and to stress the
need for change. Sixteen pages of amendments were proposed and most were accepted,
which resulted in a progressive report which did not demean requests for assistance.
The deputy chairman of the Social Order Committee ratified the tendency to maintain the
battle for citizenship and rights, as set forth in the proposal of the national movement of
persons with disability. In addition, he removed many paternalistic and assistance-related
articles which had remained in the report of the Subcommittee of Minorities. However,
the article which protects the truly poor and disabled person with disability, unable to
provide for himself, and the article which declares all institutions that deal with persons
with disability as exempt from taxes, were eliminated. These eliminated articles must be
object of amendments to be included in the course of the constitutional process.
Nevertheless, the substitute article related to the Social Order was a step forward which
the progressive forces had not expected.
STEPPING BACKWARDS
The substitute amendment by Bernardo Cabral, Reporter of the New Constitution,
submitted in August, 1987, represented a cruel shock to most of our achievements
reached during the Constitutional Assembly. Years and decades of debates, advances,
growing awareness, transformation of prejudice into concept, vanished into thin air,
frustrating the unanimous commitments of the Congressmen who Drew up the new
Constitution.
The losses are as follows:
1A) In terms of Individual Rights, we no longer exist legally or constitutionally and
have gone back to the open field of injustice and discrimination. B) Prevention of
disabilities once again escapes from the hands of government authorities. C)
Responsibilities imposed by laws are not attributed to anyone, even though this, on an
extensive scale, leads to disabilities, unprotected work, the violence of policies focused
on assets and that disregard liabilities that are produced by assets.
2- They present us with a Trojan horse when they want “the physically disabled” to be
exempt from voting. Thank you very much, but persons with disability only bear a
disability, as the appropriate terminology explains it, and we are able enough to vote and
the voting accesses and processes are not disabled: voting for us is a right and not an
obligation.
3- Being obliged to tolerate social welfare after becoming aware that one’s civil rights are
an inconvenience because of traces of paternalism and assistance is an attitude that is
rejected not only in our discourse but also in the squeal that brand us every day:
assistance is a hypocritical crime committed by those who seek to hide political
responsibilities. Nonetheless, the paternalistic form of assistance, of training and
rehabilitating nature, with the objective of providing integration into the country’s social
and economic life, was still digestible. However, in the New Report, it is restricted to
training and to integration into community life. We don´t want parties to amuse us, as is
often provided for the elderly, we went to and we will take part in the country’s social
and economic life.
4 – One of the basic and primary rights of any being, and more so of the human being, is
the natural right to come and go. This right has to be a constitutional right. We cannot
really live if we cannot come and go? This right was taken away from us in the New
Report.
5 – Tax exemption on research, education, professional training, rehabilitation, and
treatment, related to persons with disability is not a privilege. It is but a small
compensation for 24 hours of discrimination during 365 days of the year, in the course of
our history. It is a mere repair of the multiple unjust actions that keep us in exile in
palaces and out of the streets, in institutions and in our own homes.
6 – In reference to education, we would like to state that our goal is not special education;
our goal is to special education techniques. Education must be of one kind – there
shouldn’t be two modes of education – the specificities lie in how this education is
transmitted.
We hope that our indignation is directed towards correcting the recent mistakes that the
Constitution has made in relation to persons with disability. We have faith in the
competency, seriousness and social commitment of the Congressmen drawing up the new
Constitution.
Thank you!
Subtitle: Jornal Etapa Sept 1987, pg.3
If we compare the bill drawn up in 1986 with the Constitution approved in 1988, we will
notice a major difference in terms of the extent with which we were able to interfere. The
bill hád many weak points in this respect, as it was based on the outdated, paternalistic
view on persons with disability. In this respect, we were able to take the necessary
measures. We organized a committee and held several meetings to agree on our
proposals for the Constitution. Cândido Pinto de Melo was the coordinator in São Paulo,
Carlos Burle Cardoso, in Porto Alegre, and Messias Tavares de Souza was our
spokesperson at the National Congress in Brasília. I was the secretary, responsible for
writing the minutes of the meeting. We traveled extensively. We would come to a
consensus on a given article, the draft of which we would deliver to Messias, who would
then go to Brasília to fight with the congressmen and the senators. Everybody knew that
Messias represented the movement. It was truly a major victory. (SASSAKI, in LANNA
JR, 2010, p. 410)
1992: International Day of Persons with Disability
The 37th plenary meeting of the UN General Assembly, held on 10/14/1992,
established Resolution 47/3, declaring that December 3rd of every year would be
considered “International Day of Disabled Persons.”, In 2007, the United Nations
announced that the words “Disabled Persons” would be substituted by the words
“Persons with Disabilities”. Ever since, the official name has been “International Day
of Persons with Disabilities”.
This commemorative date was established on the last day of the United Nations
Decade of Persons with Disability. The clauses of the Declaration establishing
December 3 as the "International Day of Persons with Disabilities" states as follows:
“the United Nations Decade of Persons with Disability was a period of awareness
raising and of actions to contribute towards the continued improvement of the situation
of persons with disabilities and to provide them with equal opportunities; the need for
broader and more vigorous actions on all levels to achieve the objectives of the Decade
and of the Global Action Plan for Persons with Disability; the importance of the
development and achievement of long-term strategies for the full placement into
practice of the World Action Program for Persons with Disabilities in the aftermath of the
Decade, with the objective of building a society for all for the year 2010”. (UNITED
NATIONS, 1992)
Activist Agnes Fletcher wrote as follows: “We have rights, needs, and skills just
like all other people. From now onwards, we will have our International Day every year
to tell the world about these rights, needs, and skills, and to be sure that they are
respected.” (FLETCHER, 1996, p. 5)
1993: Rules on Equal Opportunities
One of the direct results of the Decade of the United Nations of Persons with
Disabilities was the adoption of the document Rules on Equal Opportunities for Persons
with Disabilities. The document was adopted by the 48th session of the UN General,
held on 12/20/1993, through Resolution 48/96. The document establishes 22 rules
grouped under three areas: I – Requirements for equal participation; II – Target areas for
equality; III – Implementation measures.
According to the document:
“(24) The term `equalization of opportunities´ means the process through which the various
systems of society and the environment, such as services, activities, information and
documentation are made available to all, particularly to persons with disabilities . (25) The
principle of equal rights implies that the needs of each and every individual are of equ al
importance, that those needs must be made the basis for the planning of societies and that all
resources must be employed in such a way as to ensure that every individual has equal
opportunity for participation. (26) Persons with disabilities are members of society and have
the right to remain within their local communities. They should receive the support they need
within the ordinary structures of education, health, employment and social services . (27) As
persons with disabilities achieve equal rights they should also have equal obligations. As
those rights are being achieved, societies should raise their expectations of persons with
disabilities . As part of the process of equal opportunities, provisions should be made to
assist persons with disabilities to assume their full responsibility as members of society”.
(UNITED NATIONS, 1996, p. 14-15)
2006: The 25 years of the AIPD
The "Centro de Vida Independente Araci Nallin" (CVI-AN) center, with the
support of several partners organized the IYDP 25 Anos Depois. 1981: Ano
Internacional das Pessoas Deficientes. 2006: As Memórias, as Conquistas e o Futuro”
seminar, held at the Hotel Novotel Jaraguá Convention, hotel in São Paulo, State of São
Paulo, on December 3 and 4, 2006.
As a member of the CVI-AN and co-coordinator of the activities of the IYDP in
1981, I hád the privilege of having been invited to give the opening address at the
referred seminar. the name of my speech was “Memories of the International Year of
Persons with Disabilities: People, Stories, and Achievements.”
It was extremely gratifying to prepare the speech and present it together with
72 PowerPoint slides. As I remembered the people, who, like me, hád taken active
participation in the IYDP, I was filled with all sorts of feelings. My memory hád
registered many amusing, sad, pleasant and unpleasant facts that hád happened in
1981. My remembrances were helped by photographs, letters, magazines, articles cut
out from newspapers, typed letters (no computers were available then), and ot her
materials which I hád collected systematically. I felt very nostalgic when I saw
photographs of friends who had passed away or who were no longer active in the
movement. My feelings were not restricted to the long hours that I hád devoted to
preparing my speech. They intensified and overwhelmed me as I was presenting my
speech, recognizing several faces in the audience whose photographs were being
projected on the screen and explained. It was very emotional!
In regard to the seminar, below are several testimonials gathered by Lia (Ana
Maria Morales Crespo) for her doctorate thesis in History, which she defended on
1/29/2010. I selected the words that refer to the above mentioned seminar.
“I saw people I hadn’t seen in many years. It was very touching to meet these friends
and hear of their accomplishments - each in his or her field. I was also touched by the
many people who joined the movement many years later. They had joined us , the "
dinosaurs." to express their solidarity. It was such a great event, which re-awakened in
me the ideas that hád motivated me at the time I was taking my college entrance
exams. I was able to come into contact again with this energy, with this utopia that
motivate d me then and still does.” (DE PAULA, in CRESPO, 2009, p. 211)
“I think that the seminar held in São Paulo, in December, 2006, organized by the
Centro de Vida Independente Araci Nallin center with the support of other
organizations, among them Sorri-Brasil, is a very important seminar, as it
celebrates the 25th anniversary of the International Year of Persons with Disability .
During the event, we listened to reports of the "Jurassic" leaders from the first
generation of the movement to protect the rights of persons with disability, who
shared their achievements and their history with the new generation.” (BUENO, in
CRESPO, 2009, p. 234)
“Brazil has a problem with history, especially recent history. We don´t need to be
nostalgic, but we need to know what has already been accomplished in order to
accomplish something new. In addition to retrieving the past, we have to look towards
the future. This is why the event celebrating the 25th anniversary of the AIPD was so
fabulous! We talked about the history of the movement, of our peers and of our own
journeys. We talked about things we hád left behind but that hád actually hád shaped
our own personality. N now we need to find out to what extent that retrieval was merely
a recognition or if it also triggered some actions that were implemented soon thereafter
and whether this will inspire future actions.” (BAGGIO NETO, in CRESPO, 2009, p.
257)
“The event celebrating the 25th anniversary of the AIPD, held in São Paulo in 2006,
was like travelling in a time machine. It was great to see old friends and find out that
those that have already left us have not been forgotten. I felt such strong emotions only
a few times in my life. The ties we established in those times are still alive because
they were based on a movement of solidarity.” (DE FREITAS, in CRESPO, 2009, p.
278)
2006: Finally, the UN Convention
On 8/25/2006, twenty five years after the IYDP, the Ad Hoc Committee
established by the United Nations approved text of the Convention on the Rights of
|Persons with Disabilities (CRPD), which hád taken four years to prepare. On
12/13/2006, the United Nations General Assembly adopted the CRPD through
Resolution A/61/106. On 5/3/2008, the CDPD went into effect around the world.
2007-2009: Brazil and the UN Convention
On 3/30/2007, Brazil signed the CRPD at the UN headquarters in New York. On
7/9/2008, the Senate and the House of Representatives ratified the CRPD and made it
equivalent to a constitutional amendment, through legislative decree n. 186. On
8/1/2008, Brazil filed the ratification of the CRPD at the UN headquarters. On 8/25/2009,
Brazil promulgated the CRPD through Decree nº 6.949.
Article 8 of the CRPD, which contemplates awareness, is similar to Article 10 of
the previously mentioned Sundberg Declaration, with the difference that in Brazil, the
CRPD was incorporated into the Federal Constitution. The article establishes as follows:
“The Member States undertake to adopt immediate, effective and appropriate measures
to: (a) Raise the awareness of all of society, including families, on the conditions of
persons with disabilities and foster the respect for rights and for dignity; (b) Battle
stereotypes, prejudice and harmful practices in relation to persons with disabilities,
including those related to gender and age, in all areas of life; (c) Promote the
awareness on the skills and contributions of persons with disabilities.” (UNITED
NATIONS, in BRASIL, 2010, p. 26)
The article further establishes that the measures for these three objectives
include, for example, incentives for all media entities to portray persons with disabilities
in a manner compatible with the purpose of the CRPD.
From exclusion (1981) to full participation in society
(2011)?
Strictly speaking, yes. In Brazil, in 1981, the studies conducted by the IYDP
enabled us to realize that persons with disability were excluded to a great extent from
most of the opportunities enjoyed by normal people. In 2011, we verified that persons
with disability have more access to common systems of society. therefore, participation
is much greater than it was 30 years ago.
However, if we look at these results more carefully, we verify that exclusion has
not been totally eliminated yet and that most persons with disability still do not participate
entirely in the opportunities available to the rest of the population. How can this be
explained?
In the course of the last 30 years, the quality and quantity of assets actually
improved the life of a small number of persons with disability. We have always sought
and given value to the quality of services, programs, equipment, and other assets but we
have rarely (maybe never) invested in resources and strategies able to provide to this
quality to all persons with disability. We have been able to benefit 20% of all these
persons. the result is that in the 21st century, millions of persons with disability living in
Brazil are still as excluded as were those persons with disability who lived in 1981.
Maybe we were wrong in believing that laws and public policies would
automatically provide access of ALL persons with disability to these assets. Unless we
urgently create the resources and strategies to reach out to the entire segment of this
population, we will be at risk of evidencing the same kind of inequality thirty years from
now.
Bibliography
BRASIL. Convenção sobre os Direitos das Pessoas com Deficiência e Protocolo
Facultativo. Brasília: Secretaria Nacional de Promoção dos Direitos da Pessoa
com Deficiência, 2010.
CRESPO, Ana Maria Morales. Da invisibilidade à construção da própria cidadania. Os
obstáculos, as estratégias e as conquistas do movimento social das pessoas
com deficiência no Brasil, através das histórias de vida de seus líderes. Tese
de doutorado em História, apresentada à Universidade de São Paulo e
aprovada em 29/1/2010. São Paulo, 2009.
CUELLAR, Javier Perez. Mensagem do Secretário-Geral da ONU. Carta-Circular n. 2,
de 19/4/1983. Nova York: Nações Unidas, 1983.
FLETCHER, Agnes. Ideias práticas em apoio ao Dia Internacional das Pessoas com
Deficiência; 3 de Dezembro. (Original publicado em Londres em 1993). São
Paulo: Prodef/Apade, 1996.
LANNA JR, Mário Cléber Martins (comp.). História do Movimento Político das Pessoas
com Deficiência no Brasil. Brasília: Secretaria de Direitos Humanos. Secretaria
Nacional de Promoção dos Direitos da Pessoa com Deficiência, 2010.
NAÇÕES UNIDAS. Programa de Ação Mundial para as Pessoas com Deficiência. 2ed.
Brasília: Corde, 2001.
NAÇÕES UNIDAS. Normas sobre a equiparação de oportunidades para pessoas com
deficiência. (Original publicado pela ONU em Nova York em 1994). São Paulo:
Apade/CVI-AN, 1996.
NAÇÕES UNIDAS. Declaração do Dia 3 de Dezembro como o Dia Internacional das
Pessoas com Deficiência. Nova York: Nações Unidas, 1992.
REHABILITATION INTERNATIONAL. Barrier free design: a report of a United Nations
Expert Group Meeting. International Rehabilitation Review, Nova York, primeiro
trimestre de 1975, vol. XXVI, n. 1, edição especial.
SASSAKI, Romeu Kazumi. Inclusão: construindo uma sociedade para todos. 8ª ed. Rio
de Janeiro: WVA, 2010.
UNESCO. Declaração de Sundberg. (Aprovada na Conferência Mundial sobre Ações e
Estratégias para Educação, Prevenção e Integração, organizada pelo Governo
Espanhol em cooperação com a Unesco e realizada em Torremolinos, Málaga,
Reino da Espanha, nos dias 2 a 7 de novembro de 1981).
UNITED NATIONS. AIPD Plan of action – Resolution 34/158, June 13, 1979. Nova
York: Division for Economic and Social Information, 29 julho 1980.
UNITED NATIONS. AIPD Liaison Circular 3/79. Genebra: Centro de Desenvolvimento
Social e Assuntos Humanitários da ONU, setembro de 1979.
UNITED NATIONS. International Year for Disabled Persons – Resolution 31/123,
December 16, 1976. Nova York: Assembleia Geral, 2 fevereiro 1977.
CHAPTER
3
The Genesis of the movement of persons with disabilities: the heroic phase, the
pioneering associations and the core leaders
Lia Crespo
On the international level, the battle for the rights of disabled persons has a history of
more than 50 years. The battle began in the United States and in Europe, after the Second
World War, when mutilated war veterans came back home. The battle intensified from
the 1960s onwards, impelled by the struggle for civil rights.12
Associations of disabled persons have existed since the 1950s, involved in the struggle to
defend the rights of their members. However, the disability movement itself began in
1979/1980, when Pioneer associations joined forces with new organizations, whose
outstanding characteristic was to protect the rights of the entire social segment and not
only of the associations’ members. In the words of Romeu Sassaki, a disability movement
activist and consultant on inclusion:
Mobilization in the State of São Paulo was led by various existing associations of
physically and visually disabled persons (such as, for example, “ Abradef-Brazilian
Association of Persons with Physical Disabilities - Associação Brasileira de Deficientes
Físicos,” “AADF-Association of Assistance to the PhysicallyDisabled - Associação de
Assistência ao Deficiente Físico,” “ CPSP – Paraplegics Club of São Paulo - Clube dos
Paraplégicos de São Paulo,” “ Adeva-isually Disabled and Friends - Associação de
Deficientes Visuais e Amigos,” “ FCD-Christian Fraternity of the Sick and Disabled Fraternidade Cristã de Doentes e Deficientes,” “ Sodevibra-Brazilian Society of the
Visually Disabled - Sociedade dos Deficientes Visuais do Brasil,” “ Aide-Association for
the Integration of the Disabled - Associação de Integração do Deficiente”). In the past,
these associations had acted on their own, even though their objectives were similar:
namely, the struggle for survival and/or the possibility of taking part in sports and
cultural activities. (SASSAKI, 1979)
12
. More information in “The Disability Movement and Its History”, by David Pfeiffer,
1995, available on http://www.independentliving.org/docs3/pfeiffer95.html, and
“Disability Culture: Beginnings - A Fact Sheet”, by Steven E. Brown, available on
http://www.independentliving.org/docs3/brown96a.html, accessed on 7/1/ 2009.
In the late 1970s and early 1980s, Brazilian society was getting mobilized to demand the
country´s return to democracy. Various traditionally discriminated sectors began their
battle for their rights and against prejudice. Undoubtedly inspired by this unusual
historical moment, disabled persons – who up to that time, had been invisible to society –
began to organize themselves on a nationwide level to clamor not only for their rights and
for citizenship, but also for the recognition of their existence in an increasingly inclusive
society – even though these were not the words used in those times.
Motivated by this singular historical moment and attracted by this innovative objective,
existing associations joined forces with new organizations, with the objective of creating
a nationwide entity that would claim their rights and denounce prejudice against and
discrimination of persons with disabilities by society. Thus, from 1979/80 onwards, the
pioneer associations sought to create a united front with the new associations that were
being created (such as, for example, the “NID-Center for the Integration of the Disabled
- Núcleo de Integração de Deficientes,” the “ MDPD-Movement for the Rights of
Persons with Disabilities - Movimento pelos Direitos das Pessoas Deficientes” the “
APDFB- Brazilian Association of the Paraplecis and Physically Disabled - Associação
dos Paraplégicos e Deficientes Físicos do Brasil,” and “ Aparte – Taubaté Paraplegics
Association - Associação de Paraplégicos de Taubaté.” (SASSAKI, 1979)
Without intermediaries or protectors
The first meetings, held in 197913, at the “Associação de Assistência à Criança
Deficiente14” (AACD), in São Paulo, were attended by members of disabled persons´
organizations –as well as individuals with disabilities who were not linked to any such
organizations, their family members, and rehabilitation professionals, most of whom were
not disabled. (SASSAKI, 2003). The topics addressed at these meetings included the
program of the International Year of Persons with Disabilities (1981). According to a
report by Romeu Sassaki, the role played by the State of São Paulo was crucial to
publicize the movement:
The first meetings of this recently created movement began in the second half of 1979.
From then onwards, we used all the time available to prepare the content of the lawsuits
and actions that would be triggered on a national level in 1981. People came from all
over to participate in the meetings in São Paulo. (...) The fact is that leaders of the
movement had always acted independently in other parts of Brazil. However, São Paulo
was the first state in which a number of people and entities got organized to achieve a
common objective. The actual mobilization, which gave rise to the movement itself, began
here in São Paulo, in 1979.15
At these meetings, the clamor for a change in the attitude that society had towards
disabled persons began to be voiced and felt. In the words of Sassaki:
13
. The first before last year of the Rehabilitation Decade (1970-1980), proclaimed by
Rehabilitation International.
14
. At the time, called “Associação de Assistência à Criança Defeituosa.”
15
. In an interview for my doctorate thesis.
Humiliating paternalism in relation to the needs and potential of disabled persons was
the prevailing attitude until then. In those times, disabled persons did not have a voice or
permission to vote on the big and small decisions that affected their lives. Disabled
persons had been treated as if they were unable to speak or decide for themselves on
their needs or as if they did not have the courage to publicly denounce the injustice they
had been submitted to because they were seen as a minority within the population in
general. ( SASSAKI,1979)
In the opinion of Cândido Pinto de Melo, an activist representing the “Movimento pelos
Direitos das Pessoas Deficientes (MDPD)’ movement, the disabled persons´ movement
was the result of the disabled persons´ desire to be responsible for their own destiny. The
historical moment had come to tear away from this unfair past; the time had come to
disqualify former protectors and spokespersons; the time had come for disabled citizens
to “be the agents of their own history and to be able to speak for themselves and to speak
about their issues without the imposition of intermediaries or protectors.” (MELO,
1990)16
In the opinion of Araci Nallin, representative of the "Núcleo de Integração de Deficientes
(NID)" organization, the movement promoted a fundamental change in the status of
disabled persons and in the perspective with which issues related to disabilities were
perceived by society:
The mobilization of disabled persons, in the sense of a struggle for the recognition of
their rights, is a fairly recent fact In the history of our country. The related groups began
to be created in late 1979 and early 1980. This period coincided with the lifting of
political restrictions, which triggered debates on several issues and the organization of
sectors of the community. Before that time, the issue of persons with disabilities was
linked to religion or to medicine, and the related spokespersons were clerics or
rehabilitation professionals. The issues of disability and persons with disabilities were
addressed from a charity or science point of view. The organization of groups clamoring
for their rights meant that the direction and objectives of the battle were undertaken by
the directly interested stakeholders, namely, persons with disabilities. The issue of
persons with disabilities was also included as a subject in the Social Sciences curriculum.
(NALLIN, 1990)17
Adverse political and economic scenario
In the opinion of Cândido Pinto de Melo, the adverse political and economic scenario
faced by the Brazilian population at that time was especially adverse for persons with
disabilities. This situation also influenced the creation of the movement, the
mobilization, and its objective of involving broad segments of the population to transform
society. Thus, the late 1970s and early 1980s,
16
. In a document read and discussed during the “Encontro Paulista de Pessoas
Deficientes” (São Paulo State Meeting of Persons with Disabilities), held in the town of
Jundiaí (State of São Paulo),on April 7 and 8, 1990, the objective of which was to
evaluate the ten years of the movement.
witnessed the onset, in São Paulo, of enormous concern voiced by persons with
disabilities in view of the country´s distressed economy and the consequences of this
situation on persons with disabilities. This concern led to organizational and mobilizing
actions, which further motivated persons with disabilities, health care professionals, and
several aid associations and disabled persons´ associations. The backbone of this action
was the need to take political action rather than assistance, and such political action had
to bring people together and lead to repercussions which would mobilize persons with
disabilities and attract the entities that provided assistance to the disabled, public
entities, and government authorities. (MELO,1990)18
Thus, although until the late 1970s the pioneer associations did not engage in joint actions
with similar organizations, the new organizations were already created with a political,
mobilizing, and agglutinating outlook. Above all - unlike their existing counterparts - the
new organizations´ proposal was to transform their current reality. For the new
organizations, the degree of accessibility and equality of opportunities offered to all
citizens, including persons with disabilities, were the basis of a fairer and more civilized
society.
In order to achieve these specific objectives, movement leaders and participants made
sure that the debates and decisions were carefully documented and registered. This
documentation allowed for the development of the discourse and the philosophy adopted
by the movement and, above all, allowed for the movement to reach out to peer
organizations not only from São Paulo, but also from other states. In the words of
Sassaki:
ever since the earliest meetings, we knew how important it was to take notes and write
reports which were later on copied and distributed at the next meeting. This is done
systematically. The reports informed who had attended a given meeting, the topics that
had been discussed at the meeting, and the resolutions. It´s great to talk and discuss, but
the minutes of the meeting and the reports, because these allow ideas to evolve. The
documentation was the seed that was taken away by many people to be cultivated on their
own lands, in their neighborhoods and towns. These reports, which documented the ideas
- later transformed into movement philosophy, concepts, principles and slogans - which
led to the increasing mobilization of people and entities. (Romeu Kazumi Sassaki)19
Thus, “due to the firm and coherent voice of this oppressed minority," whose movement
was organized in 1979 and reached its peak in 1981, the International Year of Persons
with Disabilities (IYPD, in Portuguese AIPD), their most important demands became
very clear. (SASSAKI, 1979)
Among these demands, the outstanding one included the difficult access to ortheses and
prostheses and to physical, professional, and social rehabilitation services that “did not
meet the needs of persons with disabilities, neither quantitatively (for each individual) or
quantitatively (for all persons). (SASSAKI, 2004)
Invisibility, knowledge and empowerment
17
. In an interview for my doctorate thesis.
Until the early days of the movement, it had been unquestionable that institutions from
the field of rehabilitation owned the scientific knowledge on disabilities because, as
philosopher Michel Foucault (1926-1984) said, in our society, “the truth is centered on
scientific discourse and on institutions that produce such knowledge.” Therefore, it was
only natural that rehabilitation institutions had the power (and still do) conferred upon
this knowledge. After all, “power and knowledge are directly related.” (FOUCAULT,
2004)
However, still according to Foucault, there is a “complex and unstable game,” In which
discourse:
The discourse carries and produces power, reinforces it, but also undermines it, exposes
it, restricts it, and allows it to be barred.(...) There is no such thing as the discourse of
power on one side and another discourse that counteracts it. (FOUCAULT, 2005)
As “power is exerted through networking,” those who are submitted to power can also
exert it, because they will never be “the inert target or consenter of power.”
(FOUCAULT, 2002). Thus, there is no such thing as being "outside" of power. Where
there Is knowledge, there Is power. At the same time, as new knowledge arises every day
in our disciplinary society7, new subjects battles the forces that seek to reduce them to
objects or invisibility.
By rebelling against the parties that had historically always spoken for, and in the name
of, persons with disabilities - that is, the family members, the clergy, scientists,
politicians, philanthropists in general, and, above all, health care professionals - the
former "patients”
were actually criticizing the rehabilitation model in effect. The protesters began to
challenge the discourse and the "scientific truth" related to disabilities.
Thus, as stated by Madel Therezinha Luz, institutions dedicated to rehabilitation
unknowingly and ironically created another discourse.
Given that the history of the institutions is the history of the dominant discourse, the
discourse of the class that holds power in society, it stands to reason that the history of
resistance to the discourse Is also the history of the battle for another discourse, for the
discourse of others. (LUZ, 1979)
Thus, as many disabled persons "rehabilitated" by institutions became visible and began
to organize themselves and speak for themselves, giving rise to the social movement of
persons with disabilities. a reluctant society started to ask the institutions about what type
“of knowledge they want to disqualify (...), which speaking subject,(...) which subject of
the experience and knowledge you want to demean when you say: “I, the one
discoursing, give a scientific discourse and I am a scientist?’” (FOUCAULT, 2005)
20
Because, according to Foucault, discourse is always a product of the relationships of
power and, as such, produces knowledge and constructs reality, persons with disabilities
began to change their lives within Brazilian society once they started speaking for
themselves and created their own discourse.
And so the historical moment experienced by Brazilian society and the growing
dissatisfaction of persons with disabilities (especially those who had been "rehabilitated"
by existing institutions) led to the creation of the movement,
which happened simultaneously in several cities around Brazil. At first there was no
communication with or coordination among the groups. Organized movements of persons
with disabilities sprung up in cities such as Porto Alegre, Curitiba, Rio de Janeiro,
Recife, São Paulo, Salvador, Brasília, Ourinhos and others. Once communication was
established among these groups, the result was the organization of local, regional and
national meetings, with the objective of exchanging ideas and making decisions.
(SASSAKI, 2003)
Pioneering associations and intrepid leaders
To celebrate the 30th anniversary of the International Year of Persons with Disabilities,
this book contains testimonials of several activists who participated during the " heroic
times"21 of the movement of disabled persons. However, before reading the testimonials
of the self-proclaimed movement “Jurassic”22 activists, which will take us back 30 years,
it is only fair to learn about the history of the pioneering associations and of the intrepid
leaders who preceded the organized movement of persons with disabilities.
"São Paulo Paraplegics Club - Clube dos Paraplégicos de São Paulo (CPSP)"23
Image. Logo of the “São Paulo Paraplegics Club - Clube dos Paraplégicos de São Paulo.”
Blue circle with a yellow Seal in the Center. The seal is wearing a t-shirt and is sitting in
a wheelchair used to play basketball. The seal is twirling a basketball. The words
surrounding the Seal are “C.P.S.P. – Clube dos Paraplégicos de São Paulo”. Subtitle:
Logo of the “Clube dos Paraplégicos de São Paulo. “
21
. That is, the earliest phase of the movement of persons with disabilities, an analogy
with the phases of the Modernist Movement.
22
. In the mid 1990s, during a seminar aimed at training disabled persons how to be
independent, organized by the "Rio de Janeiro Center for Independent Life - Centro de
Vida Independente do Rio de Janeiro (CVI-Rio)," someone started using the word
”jurassic” to refer to the leaders that had begun the movement. This nickname caught on
and most of the early activists are proud to say that they are “Jurassic”.
23
. More information on the link http://www.cpsp.com.br/htm/historia.htm, accessed on
4/16/09.
The "Clube dos Paraplégicos de São Paulo (CPSP)" was founded on July 28, 1958,
inspired by the Stoke Mandeville International Sports Federation, a pioneering
international organization of wheelchair sports. This organization was created on July
28, 1948 by British neurologist Ludwig Guttman, considered the “Baron de Coubertin” of
the Special Olympics.
Sérgio Del Grande, the founder of the "Clube dos Paraplégicos de São Paulo," was born
in the city of São Paulo on October 12, 1936. He lived in this city for his entire life.24
The son of Italian industrialists, , Sérgio passed away on May 11, 2005. During his
lifetime, he was the "face" of the CPSP. The "Troféu Sérgio Del Grande de Atletismo e
Natação trophy for swimming and athletics25 was created in his honor.
Image. Color photograph of the Troféu Sérgio Del Grande trophy. The trophy consists of
a photo of a smiling Sérgio Del Grande framed by a gold frame over a brick wall. A
nameplate with Sergio´s name is on the bottom part of the frame. Sérgio is wearing a
white shirt, a brown suit and a burgundy tie. A sticker with the logo of the “Clube dos
Paraplégicos de São Paulo” is attached to the left side of the suit. . Subtitle: Trofeu
Sergio Del Grande trophy.
At the age of 15, Sergio was studying in the sophomore year of high school at the
traditional Arquidiocesano school. At the time, this school was an all boys’ school.
Sergio was enrolled in the Arquidiocesano school at the age of 10. The school premises
included four soccer fields, where students went to physical education classes. On
October 28, 1951, a Saturday, around 4:00 pm, Sergio was at soccer practice. He fell
against the goal frame and Injured his back, after trying to kick the ball inside the goal
net. At that time, the frames of goal nets were made of wood and had sharp angles.
24
. More information found on http://www.cpsp.com.br/htm/historia.htm and
http://www.centroruibianchi.sp.gov.br/sis/lenoticia.php?id=575.
25
. More information on the link http://www.cpsp.com.br/_homenageado.html, accessed
on 04/16/09.
Del Grande tried to go back to the game, but did not have the strength to kick the soccer
ball. He changed back into his clothes and managed to catch the streetcar to go home.
When he got home, he needed help to go up the stairs to get to his bedroom, on the
second floor.
On the following day, he was unable to stand up. Prominent neurologists, among whom
was Renato da Costa Bonfim26, were called in to examine him. The doctors decided that
Sérgio would be taken to the Instituto Paulista hospital for a hospital stay. One of the
attending physicians was a director of the hospital.
After one year of physical therapy at home, Del Grande was sent to the Kessler Institute
For Rehabilitation27, in the United States. From São Paulo to Rio de Janeiro, Sérgio and
his father flew in a Douglas DC-328. In Rio de Janeiro, they got on Super Constellation,
which belonged to Pan-Am29. Their destination was New York, with stopovers in the
city of Belém, State of Pará and in Puerto Rico.
After landing in New York´s La Guardia Airport, they travelled in an ambulance for 100
kilometers until the city of West Orange, New Jersey, where the rehabilitation center was
located. They were met at the Center by Dr. Kessler himself. The entire trip had taken
24 hours.
Guided by the instructor, Sérgio learned how to drive an adapted vehicle, donated to the
Center by one of the leading US automobile manufacturers. Months later, Sérgio got his
driver´s license.
At the Kessler Institute, sports were part of the rehabilitation process. Sérgio decided to
sign up to play wheelchair basketball because his height (1.85 meters) was appropriate
for this sports modality. Competitive games with other rehabilitation institutions were
held on Saturdays. The residents of the rehabilitation centers went to restaurants, clubs,
amusement parks, movies, baseball games, boxing matches, etc.
Del Grande brought back an ultra modern, folding wheelchair and his 1956 Chevrolet
Bel Air when he came back to Brazil. The adapted car had automatic gears, and the gear
shift was placed next to the steering wheel. This mechanism was later used as a model
for other disabled persons to enable them to drive.
26
. Founder of the “Associação de Assistência à Criança Deficiente” rehabilitation center.
More information can be obtained at http://www.aacd.org.br, accessed on 5/8/2009.
27
. More information can be obtained at http://www.kessler-rehab.com, accessed on
5/8/2009.
28
. The Douglas DC-3 was a twin-engine civilian airplane that revolutionized air
transportation of passengers in the 1930s and 1940s. More information can be obtained at
http://pt.wikipedia.org/wiki/Douglas_DC-3, accessed on 5/8/2009.
29
. Pan American World Airways, better known as Pan Am, was the leading U.S airline
company from 1930 until it went out of business in 1991. More information can be
obtained at http://pt.wikipedia.org/wiki/Pan_American_World_Airways, accessed on
5/8/2009.
Sérgio Del Grande suggested that Doctor Renato Bonfim bring the Pan-Am Jets down to
Brazil for demonstration games. The Pan-Am Jets was a wheelchair basketball team,
whose members were persons with disabilities, who were Pan Am employees.
In November 1957, the Pan-Am Jets team played in São Paulo at the Ginásio do
Ibirapuera stadium, which was filled to capacity. They also played in Rio de Janeiro, at
the Maracanãzinho stadium. At that time, Junius Kellogg30, one of the basketball players,
suggested that Del Grande start a wheelchair basketball team. Kellogg was the first AfroAmerican to play basketball for Manhattan College.
30
. Junius Kellogg was born on March 16, 1927 and passed away in September 1998. He
was the coach of the Pan Am Jets and Brooklyn Whirlaways teams. He was the leading
coach of the U.S wheelchair basketball team at the Stoke Mandeville Games (1957, 1958,
1959, 1961), and of the U.S. wheelchair basketball team at the Tokyo Special Olympics
in 1964. In 1981, he was named to the Hall of Fame of the United States National
Wheelchair Basketball Association. Kellogg was a member of the board of directors of
the Association of Paralyzed Veterans for a number of years, and of the City of New
York from 1966 until his death in 1998. In 1997, he was awarded the Honoris Causa
Doctorate Degree from the Manhattan School of Law. Source:
http://en.wikipedia.org/wiki/Junius_Kellogg and
http://www.nwbahof.org/hofmembersDetails.cfm?ID=29 accessed on 5/8/2009.
In 1951, he became renowned for denouncing a corruption scheme going on at college
basketball games. The ensuing investigation involved 32 basketball players, seven
colleges, and 86 games played from 1947 to 1950. After getting his Law Degree from
Manhattan College in 1953, he joined the famous Harlem Globe-Trotters team31. In 1954,
he was involved in a car accident, the result of which was cervical spinal cord injury and
paralysis. He then became an enthusiastic fan of wheelchair sports.
Image. Two side-by-side photographs. Color photograph of a young Junius Kellog,
before the car accident that paralyzed him. In this photo, Junius is wearing a Jersey with
the words “Original - Harlem – Globetrotters” on it. The black-and white photograph is
of an older Junius Kellog, wearing a sports shirt and blazer. The athlete is smiling in
both photographs. Subtitle: Junius Kellog.
To help Del Grande in this venture, Kellogg sent him the proper wheelchair for
basketball. Sérgio allowed a company to copy and manufacture this wheelchair model
under the condition that the company donate ten wheelchairs to a future team of athletes
with disabilities.
Del Grande looked for future athletes at the rehabilitation centers existing in those times.
In February 1958 he began basketball training at São Paulo´s Hospital das Clínicas (HC
– Clinics Hospital of the School of Medicine, São Paulo University) teaching hospital.
With the support of the “Federação Paulista de Futebol” soccer federation and of above
all of Paulo Machado de Carvalho32, the “Ases da Cadeira de Rodas” – the basketball
31
. More information can be obtained from http://www.harlemglobetrotters.com/,
accessed on 7/3/ 2009.
32
. Paulo Machado de Carvalho was born 11/9/1901 and passed away on 3/7/1992. In
1931, e founded the Rádio Record radio station and the Associação das Emissoras de São
Paulo radio broadcasting association. Together with João Havelange, the then president
of the Confederação Brasileira de Desportos (CBD) sports federation he was involved in
Brazilian soccer. He was the head of Brazil´s national soccer team at the World Soccer
Cup games held in 1958 (Sweden) and in 1962 (Chile), after which he was nicknamed
“Marshall of the Victory - Marechal da Vitória”. In 1961, the then São Paulo City mayor
Prestes Maia named the Estádio do Pacaembu soccer stadium after him, in honor of his
achievements.
team that preceded the CPSP – played their first game in February 1958, at the Ginásio de
Esportes Baby Barioni stadium.33
http://pt.wikipedia.org/wiki/Paulo_Machado_de_Carvalho, accessed on 5/8/ 2009.
33
. The Complexo Olímpico da Água Branca sports Center and the Departamento de
Educação Física e Esporte (Defe) department were inaugurated in 1945. The facilities
were named in honor of Horácio G. Barioni, a Brazilian of Italian origin, whose
nickname was “Baby.” Baroni was a renowned basketball player, and a sports writer.
He created and organized the Jogos Abertos do Interior (Hinterland Open Games), a
sports tournament that was officialized in 1936. The first games of this tournament
were held in the city of Montes Altos State of São Paulo. More information can be
obtained at http://www.sejel.sp.gov.br/baby/historia.htm, accessed on 5/8/ 2009.
Image. Black and white photo. Team in patio training wheelchair basketball. One of the
players is dribbling the basketball. In the back, cars from the 1950s and buildings that are
part of São Paulo´s Hospital das Clínicas teaching hospital. Subtitle: Sérgio Del Grande
trains basketball at the HC.
The Clube dos Paraplégicos de São Paulo was founded on July 28 , 1958. Guests at the
event included Paulo Machado de Carvalho, Vicente Fiola and the national soccer team
winner of the World Soccer Cup in Sweden in 1958.(ARAÚJO,1997)
Sérgio Del Grande also pioneered the battle to exempt persons with disabilities from
paying import tariffs on automatic gear vehicles, of models not manufactured in Brazil..
His efforts in this respect began during the presidential term of Jânio Quadros, continued
during the presidential term of João Goulart and his objective was finally achieved in
1965, during the presidential term of Castelo Branco. Sérgio and his irresistitble
Chevrolet Malibu, imported tax free in 1966, won the heart of his future wife, Irene
Aparecida Hotta, a former beauty pageant contestant. Irene had also been involved in a
car accident which paralyzed her. The accident involved the VW Beetle she had won as a
prize for having won the beauty pageant. Sérgio Del Grande attended the movement´s
earliest meetings held in 1979.
Associação Brasileira de Deficientes Físicos (Abradef)(Brazilian Association of the
Physically Disabled)
Founded in São Paulo in 1961, Abradef´s initial objective was to protect the interests of
street vendors in São Paulo. According to the special issue of the Abradef newsletter,
related to the 1º Seminário Estadual da Pessoa Deficiente34 state seminar (published in
1985), 60-year old David Pinto Bastos had been the president of the association since
1968 and was one of the main leaders of the movement. David was disabled at the age of
14 when he permanently injured part of his right arm. At that time he was working at the
Litografia Bonsucesso print shop, located on Rua General Osório street, in São Paulo. He
sold candy in a street stall on Viaduto do Chá, in front of the building of the former
Companhia Light electric power utility.
34
. This event resulted in the creation of the Conselho Estadual Para Assuntos das Pessoas
Deficientes, the state committee for issues related to persons with disabilities.
Image. Color photo. Event participants sitting around the table. Subtitle: Disabled
Persons Meeting, 1980. From left to right, Sérgio Del Grande, Vinícius Tavares, David
Pinto Bastos, Evaldo Doin and Otto Marques da Silva.
Although the Abradef was mostly dedicated to protecting the interests of street vendors,
the association organized the 1º Encontro de Deficientes Físicos, meeting of disabled
persons held on January 17 and 18, 1980, at the São Paulo City Council. The objective of
this event was to address issues related to the rights of persons with disabilities. In 1980,
thanks to the work done by David and by paraplegic lawyer Vinícius Andrade, Abradef
became immediately engaged in the incipient movement of persons with disabilities.
David, who had a strong personality, was often involved in heated discussions during 1º
Encontro de Deficientes Físicos. In general, the discussions were heated because David
would defend proposals that the more “modern” leaders rejected. For example, David
advocated free transportation for persons with disabilities and tax benefits for companies
that employed them35. Most of the movement´s younger leaders were more focused on
battling for physical accessibility to buses, trains and subways. They believed that the
right to employment was an inalienable right and that tax benefits granted to companies
would ultimately encourage prejudice and lead to increasing humiliation of disabled
persons.
During a meeting held on August 2, 1980, to discuss the organization of the movement in
São Paulo, David and his group left the room after having been told to “ shut up” by Zé
Maria, from the Fraternidade Cristã de Doentes e Deficientes (FCD) organization. This
incident generated a “philosophical” discussion in the movement. Rui Bianchi do
Nascimento36 called attention “to the fact that David, like many other people in a more
underprivileged financial or cultural situation than most of the members of the
Committee37 somewhat feel as if we were sidelining them, belittling their ideas and
denying them the right to speak.” Cândido Pinto de Melo
35
. According to interview published in the special issue of the afore-mentioned Abradef
newsletter.
36
37
. More information on http://www.centroruibianchi.sp.gov.br/, accessed on 6/28/ 2009
. At that time, activists were still discussing the name of the movement in São Paulo.
We referred to the movement as “Committee.”
argued that the right attitude would be to “ emphasize the issues that bring us together,
regardless of the financial or intellectual condition.” Evaldo Doin proposed that the
committee cast a vote to “register a complaint against David´s untimely reaction.” Zé
Maria apologized for having told David to “shut up” and voted against this. Finally, the
parties agreed that Romeu Sassaki would contact the president of Abradef to “offer his
solidarity and that of the Committee,” allowing David to “get this off his chest and make
up with us.” At this meeting, the São Paulo movement approved the decision to try to
“influence the organizers of the 1980 Census to take the existence of persons with
disabilities into account”.38
Fraternidade Cristã de Doentes e Deficientes (FCD) (Christian Fraternity of the
Sick and Disabled
Now named “Christian Fraternity of the Disabled - Fraternidade Cristã de Pessoas com
Deficiência,” the FCD is an international movement that began in France in 1945.
Jesuit priest Vicente Masip introduced this movement to Brazil in 1972. The first FCD in
Brazil was established by Masip in the city of São Leopoldo, State of Rio Grande do Sul.
In December 1977, the FCD arrived in São Paulo, brought by Maria de Lourdes Guarda –
who is considered as a symbol of activists involved in the movement to protect the
rights of persons with disabilities. The FCD soon spread throughout the entire country.
The FCD refers to itself as “a lay, popular, and ecumenical movement of the sick and the
disabled” and “identified with the evangelizing mission announced by Jesus Christ”39.
Maria de Lourdes was born on November 22, 1926, in the town of Salto (State of São
Paulo), and passed away on May 5, 1996, in São Paulo. She had always dreamed of
becoming a nun, as her sister Leonor had done. Her sister entered the Congregação das
Filhas de São José religious order and took on the name of Conceição.
However, before going into the convent, Maria de Lourdes had to undergo treatment for
severe, tormenting back pain. Her physician referred her to the Hospital Matarazzo
hospital facility. She underwent five surgeries in the course of five years, the results of
which were, as described in the preface (by Jesuit priest Geraldo Marcos Labarrère do
Nascimento) of the book“ Um quarto com vista para o mundo, a vida de Maria de
Lourdes Guarda”, ( by Margarida Oliva and Guilherme Salgado -Edições Loyola, 1998))
– amputation above the right knee, total atrophy of the left leg, extraction of bones from
the hip, permanent vaginal probe, screws in the backbone, a permanent cast on the back
from the neck down to the knees; a wooden cage over the legs to prevent the bed sheet
from directly touching her body and thus impair the feeble circulation of the blood; she
was separated from her family and was confined to a hospital room for thirty years .
38
. The original minutes, which I drew up, are part of the documents owned by Romeu
Sassaki.
39
. More information can be obtained from
http://cantinhoamigoespecial.blogspot.com/2009/03/fcd-de-sao-paulo.html, accessed on
4/16/ 2009; http://www.fraterbrasil.org.br/FRATERNIDADE.htm and
http://www.entreamigos.com.br/textos/vidaind/aconpar.htm, accessed on 6/24/2009.
Maria de Lourdes was such a special person that, on August 9, 1972, she decided to
organize a party to celebrate the 25th anniversary of the paralysis that had afflicted her
and kept her tied to a hospital bed at the Hospital Matarazzo facility. The idea was not to
celebrate a disability but to celebrate a life full of joys and accomplishments she had
achieved. And, according to Father Geraldo, had decided to dedicate her life to serving
the people who came into contact with her. She started embroidering to support herself
and “welcomed everybody fully, warmly, and totally (...), instead of holding a grudge
against God and the world.”
Image. Black and white photograph. A smiling Maria de Lourdes Guarda, lying on a
stretcher, is holding a notebook in her hands. Subtitle: Maria de Lourdes Guarda, in 1980.
According to the priest Father Geraldo, at this point in her life, Lourdes,
mature in heart and mind, went in search of who she could serve. She was no longer
content to welcome the visitors who came knocking at her door. She decided to challenge
the world, paths, and distances. People who were adverse to this, brutal difficulties, and
sky-high costs gave in to her tenacity. The Fraternidade Cristã de Doentes e Deficientes
movement was her favorite cause, the cause she devoted her whole life to. (...) She visited
prison facilities and leper colonies; slums and the landless peasant movement´s tent
camps; she went to soccer stadiums to cheer for her favorite soccer team (São Paulo; she
went to the movies and ice cream parlors; she went to performances by Roberto Carlos
and to protest marches on the busy streets of San Jose da Costa Rica, in Central
America; she went to modest celebrations at the home of a disabled person living alone;
and to the monumental Corpus Christi procession at Praça da Sé square in downtown
São Paulo, crowded with hundreds of people, 400 priests, 12 bishops and the Cardinal.
She went everywhere, she visited people and gave her undivided support. (OLIVA,1998)
The FCD is active all around the world. In fact, it is the only organization of persons
with disabilities that is active – through its centers – in nearly all the states of Brazil and
in many of the country´s municipal regions.
Like Sérgio Del Grande and David Pinto Bastos, Maria de Lourdes Guarda joined and
became engaged in the movement early on – in 1979 she was already attending the
movement´s early meetings. She shared her experiences to enrich the actions of the
pioneering activists, the so-called “ Jurassic” activists.
During the “heroic phase” of the movement
Prejudice against and discrimination of persons with disabilities were rampant and there
was no architectural accessibility. The meetings always involved reports on adventures in
unknown or inaccessible environments. Getting on an airplane, a bus or a subway train;
spending the night in a dormitory for athletes, convent or military base; using a bathroom
facility in a building or simply crossing the street were impossible, difficult,
uncomfortable or even dangerous activities which demanded courage by a person sitting
in a wheelchair or using a white cane. Luckily, most of the movement´s leaders were still
young then and many of the activists placed their jobs, their academic careers and even
their health and physical integrity at risk, to dedicate their time to the battle for the rights
of persons with disabilities. It is impossible to talk about all of the activists and tell their
stories, all of which are so interesting in terms of their uniqueness and similarities. Some
of the “Jurassic” activists have “ semi-retired” from the movement. Other activists are
still actively involved in the movement. Unfortunately, many activists passed away.
The “dinosaurs”
Otto Marques da Silva, a rehabilitation professional, attended the movement´s first
meetings. As he had worked for the United Nations, he received much information and
translated many documents on the International Year of Persons with Disabilities (IYPD).
He was a consultant on rehabilitation, representing the Hospital das Clínicas, the teaching
hospital of the University of São Paulo´s Medical School on the Comissão Estadual de
Apoio e Estímulo ao Desenvolvimento do Ano Internacional das Pessoas Deficientes
state committee of the International Year of Persons with Disabilities.
Image. Color photograph of Otto Marques da Silva. Standing in front of a vase with
flowers, Otto, wearing a coat and tie, smiles while holding a trophy in his right hand.
Subtitle: Otto Marques da Silva.
Author of the book “A Epopeia Ignorada: a pessoa deficiente na história do mundo de
ontem e de hoje” (1987) and currently general coordinator of the Centro de Referências
Faster40 reference center.
Heloísa Chagas is a psychologist who became paraplegic at the age of 22, in 1972. She
went through rehabilitation at São Paulo´s Associação de Assistência à Criança
Defeituosa (AACD), where she started working as a psychologist, after graduating from
college in 1976. In 1979, she was coordinator of the Psychology Sector.
Image. Color photograph of Heloísa Chagas during event celebrating the 25th
anniversary of the AIPD. A smiling Heloísa is looking at a wooden dinosaur skeleton, a
symbol of the pioneering spirit of the protagonists of the AIPD. She holds the front part
of standing the dinosaur with her left hand. An AIPD banner is behind her. Subtitle:
Heloisa Chagas.
In 1975, she was a player on the first women´s wheelchair basketball team of the Clube
dos Paraplégicos de São Paulo. She attended the early meetings that led to the social
movement of persons with disabilities. In 1996, she funded the Centro de Vida
Independente de Curitiba center, in the city of Curitiba, where she still resides.
Cláudio Vereza41 is 57 years old. He became an activist when he started working at the
Comunidades Eclesiais de Base (CEB’s) communities. He was one of the pioneering
activists in the battle for the rights of persons with disabilities in the State of Espírito
Santo (ES).
He became involved in politics when he joined the Partido dos Trabalhadores (PTWorker’s Party) political party in Espírito Santo, in 1980. He was elected to the state
assembly for the first time in 1986, at which time he helped prepare the State Constitution
of the State of Espírito Santo. From 1996 to 1998, he was the chairman of the
Congressional Investigation Committee of the State Assembly, which investigated the
40
41
. More information on http://www.crfaster.com.br/apres.htm, acessed on 7/3/ 2009.
. More information on http://www.claudiovereza.com.br/, accessed on September 20,
2009.
state prison system, and of the Special Committee of former political prisoners, which
investigated the actions of the military regime in the State of Espirito Santo in the period
from 1961 to 1979. He was president of the State Assembly in 2003/2004. In 2006, he
was reelected to his fifth term as state assembly, with 33,726 votes.
Image. Color photograph of Cláudio Vereza during event celebrating the 25th
anniversary of the AIPD. Cláudio is sitting next to the wooden dinosaur skeleton, the
symbol of the pioneering spirit of the protagonists of the IYPD. Subtitle: Claudio Vereza.
Izabel Maria Loureiro Maior is a physician and a specialist in Public Policies and
Government Management. An activist leading an independent life, she was the first
disabled person to head (2002-2011) the Secretaria Nacional de Promoção dos Direitos
da Pessoa com Deficiência national secretariat (formerly known as Corde42), of the
Secretariat of Human Rights of the Office of the President of the Republic.
In January 2000, she started working at the Ministry of Planning, Budget and
Management. She is a professor with a master´s degree, achieved in September 1984, in
Physical Medicine and Rehabilitation from the Clinical Medicine Department of the
Medical School of the Federal University of Rio de Janeiro (UFRJ). She is full member
of the Brazilian Society of Physical Medicine and Rehabilitation, of the Brazilian
Medical Association (since 1981) and of the Brazilian Academy of Rehabilitation
Medicine. She was an advisor to the Conselho Nacional de Direitos da Pessoa Portadora
de Deficiência (Conade/SEDH) national committee. She authored the book “Reabilitação
Sexual do Paraplégico e Tetraplégico” (Revinter, 1988).
42
. The Coordenadoria Nacional para a Integração da Pessoa Portadora de Deficiência
(Corde) national coordinating team was created by Law nº 7.853, ennacted in 1999. The
mission of Corde was to implement the National Policy for the Integration of Persons
with Disabilities, as proposed by the Conselho Nacional dos Direitos da Pessoa Portadora
de Deficiência (Conade), the national council of the rights of the persons with disabilities,
created by Interim Measure 1799-6/99. The members of the national council included
government authorities and members elected by their peers from civil society
organizations. In May 2003, through Law nº 10.683, the national council was placed
under the Special Secretariat of Human Rights, an entity of Office of the President of the
Republic.
Image. Color photograph of Izabel Maria Loureiro Maior. A blue and White banner is
seen on the back wall. The words “Rights of Persons with Disabilities” are written on the
banner, next to a map of Brazil. Subtitle: Izabel Maria Loureiro Maior.
Rosangela Berman Bieler was involved in a car accident in 1976, at the age of nineteen,
which resulted in tetraplegia. Two years later, she graduated with a degree in journalism
from the Catholic University of Rio de Janeiro (PUC-RJ), and became a student advocate.
She was the co-founder of the Centro de Vida Independente do Rio de Janeiro (CVI-RJ)
center, and organized the DEF’Rio 92 and 95, international meetings of persons with
disabilities. Approximately three thousand people from nineteen countries attended the
two events.
Image. Color photograph of Rosangela Berman Bieler during the event held to celebrate
the 25th anniversary of the AIPD. A smiling Rosangela is looking at the wooden skeleton
of a dinosaur, the symbol of the protagonists of the AIPD. A banner of the event is in the
back. Subtitle: Rosangela Berman Bieler.
In 1997, Rosangela organized the Global Conference on Women and Disabilities, held in
the United States. Over 600 women from 80 countries attended the meeting. In 2004,
Rosangela was granted the Kessler Award from Rehabilitation International (RI) for her
significant actions and contributions for the rights and inclusion of persons with
disabilities. Rehabilitation International is a globally renowned organization founded in
1922. Two hundred associations from ninety countries are affiliated to Rehabilitation
International. The award is granted every four years to three activists. Rosangela has a
master´s degree from Spain´s University of Salamanca. Her master´s thesis was on the
social inclusion of persons with disabilities. She lives in New York, where she works as
senior advisor to the UNICEF Children with Disabilities, Gender, Rights, and Civil
Engagement Section of the Division of Policy and Practice.
Messias Tavares de Souza is 69 years old. Paralyzed from the neck down, he lives in
the capital city of Recife, State of Pernambuco. He has been an activist in the movement
of persons with disabilities since 1980. He represented the Northeast Region at the
Coalizão Nacional de Entidades de Deficientes national coalition and coordinated the
Organização Nacional de Entidades de Deficientes Físicos (Onedef) national
organization.
Image. Color photograph of Messias Tavares de Souza.
He organized the 1º Congresso Brasileiro das Pessoas Deficientes congress of persons
with disabilities, held in the capital city of Recife , from October 26 to October 30, 1981.
Messias advocated the bill to guarantee the rights of persons with disabilities at the
National Constitutional Assembly. He was one of the pioneers of the Coordenadoria
Municipal para lntegração da Pessoa Portadora de Deficiência (Corde-Recife), the local
coordination committee for the integration of persons with disabilities. He is a former
president of the Conselho Estadual dos Direitos da Pessoa com Deficiência (Coned-PE),
the state council of the rights of persons with disabilities, and member of the Conselho
Nacional dos Direitos da Pessoa Portadora de Deficiência (Conade/SEDH)43, the national
43
. The “Conselho Nacional dos Direitos da Pessoa Portadora de Deficiência (Conade)”
was created to monitor and evaluate the development of the national policy for the
inclusion of persons with disabilities and of the education, health, labor, social welfare,
transportation, culture, tourism, sports, leisure, and urban policies aimed at persons with
council of the rights of persons with disabilities. Currently, he is a deputy member of
both entities.
disablities. The Conade is part of the basic structure of the Special Secretariat of Human
Rights of the Presidency of the Republic (Law nº 10.683/03, article 24, sole paragraph.)
More information can be obtained at o http://www.mj.gov.br/conade/, accessed on
8/18/2009.
Romeu Kazumi Sassaki has a degree in social welfare studies. He is a consultant on
social inclusion issues, with many years of professional experience in this field. He is a
specialist on issues related to persons with disabilities (employment support, legislation,
professional rehabilitation, inclusive education, employability, media). He has always
focused on issues related to disabilities and has fostered the disclosure of such issues. He
has written the book “Inclusão. Construindo uma sociedade para todos”44, as well as
countless articles and papers on social inclusion, all of which are used as research
material by researchers involved in this field. Romeu has been an activist in the
movement for the rights of persons with disabilities for 32 years, having attended the
movement´s first meetings, held in 1979. Always carrying a camera in his hands, he has
photographed participants attending the meetings and has written notes on all meetings
and events he has attended, in addition to driving disabled persons to attend such
meetings and events. He has the biggest and most comprehensive collection of
documents on the movements organized by persons with disabilities. Romeu raised the
awareness of social movement activists on the importance of recording the history of the
disabled persons´ movement; it would have been impossible to tell the stories of this
movement without his help.
Image. Color photograph of Romeu Kazumi Sassaki during the event held to celebrate
the 25th anniversary of the AIPD. Romeu is smiling at the wooden dinosaur skeleton, the
symbol of the pioneering spirit of the protagonists of the AIPD, and holding the skeleton
with his right hand. A banner with the slogan of the event is seen in the background.
Subtitle: Romeu Kazumi Sassaki.
Upstairs
José Evaldo de Mello Doin, a former history professor and a victim of poliomyelitis, is
one of the pioneering activists of the movement for the rights of persons with disabilities.
He is responsible for the initiative which allowed the movement to meet once a month,
over a period of two years, on the premises of the Faculdades Metropolitanas Unidas
(FMU) college, in the capital city of São Paulo, where he was a professor. José Evaldo,
44
. The 7th edition of the book is available. Additional information is available at
http://storewvaeditora.locasite.com.br/loja/produtos_info.php/manufacturers_id/2/products_id/4?PH
PSESSID=fe39e999db750f7c4f900a2084876c8e, accessed on 7/11/2009.
who was afraid of travelling on airplanes, overcame this phobia in order to attend the
preparatory meetings for the
Encontro Nacional de Entidades de Pessoas Deficientes, the national meeting of persons
with disabilities, held in the capital city of Brasília, in 1980. Romeu Sassaki told me that
on one of these trips, Evaldo sat next to him, and Romeu had to hold his hand during the
entire flight to prevent Evaldo from panicking. On a trip from the town of Franca to São
Paulo, to attend the event celebrating the 25th anniversary of the International Year of
Persons with Disabilities, held in 200645, Evaldo looked at the airplane waiting on the
runway and, overcome by his fear of flying, refused to accept the air ticket provided by
the event organizers and travelled to São Paulo by taxi cab instead. He stomped into the
event but in a short while he had charmed all the people there. His presentation and his
farewell speech stirred the feelings of the Jurassic activists and the younger activists. He
was a close friend of Cândido Pinto de Melo (see below) and was devastated when he
heard that Cândido had passed away. Evaldo attended the College of Philosophy, Letters
and Sciences of Franca. He graduated with a degree in History from the University of
São Paulo. He was a professor at a number of universities and eventually transferred to
the State University of São Paulo, in Franca. He had a doctorate degree and was a full
professor. He published a number of articles in academic journals as well as books used
as research material on Brazilian history. He was a very cultured man, with a special
interest in literature. Under the pseudonym “Jeval”, he wrote many poems. He joined
the Partido Verde the environmental activists´ political party and ran as candidate to the
state assembly in 2006. He died of lung cancer on April 25, 2009.
Image. Color photograph of José Evaldo de Melo Doin during the event celebrating the
25th anniversary of the International Year of Persons with Disabilities. Evaldo pretends
to be afraid of the wooden dinosaur skeleton, the symbol of the pioneering spirit of the
protagonists of the IYPD. A banner with the slogan of the event is in the background.
Subtitle: José Evaldo de Melo Doin.
Cândido Pinto de Melo was born on May 4, 1947 and passed away on August 31, 2002.
He was the president of the União de Estudantes de Pernambuco student association, a
branch of the União Nacional
45
. More information is available on http://www.usc.br/nidb/noticias/seminario_aidp.htm,
accessed on 7/14/2009.
dos Estudantes (UNE) national student association. As a result of his student activism, he
was persecuted and an attempt on his life was made in the city of Recife on April 28,
1969. The attempt resulted in his becoming paraplegic at the age of 21. Cândido
graduated with a degree in engineering. At the time, he was being sued in court on
grounds of having violated the National Security Law. He witnessed Police authorities
invading hospitals and his home. His family members and friends were also harassed
threatened, and persecuted by Police authorities. His hospital stay led him to specialize in
biomedical engineering. He became a respected professional in this field and was a
member of the medical team led by Dr. Jesus Zerbini. He was a staff member of the
Hospital das Clínicas university hospital in São Paulo. A short while before his death,
Cândido had resigned from the Hospital das Clínicas teaching hospital to take on a
government position in the state government of Pernambuco.
Image. Color photograph of Cândido Pinto de Melo. Cândido is smiling.
He never complained about his disability. One day he told me that when he was shot and
fell on the ground he knew he had been seriously injured but that he had chosen to fight
for his life. However, he never accepted the fact that the people responsible for the
attempt on his life had never been punished. Cândido was one of the pioneers of the
organized movement of persons with disabilities and was one of the leading activists of
the Movimento pelos Direitos das Pessoas Deficientes (MDPD) movement.46
Robinson José de Carvalho was born on February 20, 1947, in the town of Varginha,
State of Minas Gerais. He passed away on December 16, 2005, at the age of 58. He was
an orthopedist and an honorary citizen of the town of Ourinhos, State of São Paulo, in
acknowledgement of the services he had provided to the community and of his public
service.
46
. More information can be obtained on http://www.torturanuncamaisrj.org.br/artigos.asp?Refresh=2008071603163072158429&Codartigo=25, accessed on
7/3/2009.
In 1975, he joined the clinical medical staff of the Santa Casa de Misericórdia de
Ourinhos hospital. He founded the Associação de Assistência ao Deficiente Físico
(AADF) association, which provided assistance to persons with disabilities. In the period
from 1979 to 1985, Robinson traveled from Ourinhos to São Paulo once a month, to
attend the movement´s meetings. He was always the one who calmed people down
during tense moments at these meetings. Ironically, his nephew, Alexandre Baroni47, was
involved in a car accident in the early 1990s and was paralyzed from the neck town.
Encouraged by his uncle, Alexandre became a leading activist in the movement.
Robinson José de Carvalho was one of the pioneers in the movement for the rights of
persons with disabilities and remained as such until his demise.
Image. Color photograph of Robinson José de Carvalho. Robinson is smiling.
Rui Bianchi do Nascimento was born on November 4, 1949 and passed away on
November 6, 2001, from complications resulting from his disability, Osteogenesis
Imperfecta, popularly referred to as brittle bone disease. Rui Bianchi had more than 23
fractured bones all over his body. At the age of 15, after having spent eight years trying to
recover from a bone fracture in his left leg, he decided to amputate it. Five years later, he
decided to have his right leg amputated as well. Rui had a degree in library sciences and
publishing from the College of Arts and Communications of the University of São Paulo
(ECA-USP). In June 2001, he received his master´s degree in communication sciences
for his dissertation “Visão parcial da deficiência na imprensa: Revista Veja (1981-1999)”.
Rui worked as a librarian at USP and as a librarian employed by the city government of
São Paulo.
He became an activist in 1980, when he joined the Fraternidade Cristã de Doentes e
Deficientes association and the Movimento pelos Direitos das Pessoas Deficientes
movement, of which he became the coordinator during the period from 1980 to 1985.
From 1988 to 1990, he was the general coordinator of the Organização Nacional de
Entidade de Deficientes Físicos (Onedef) national organization and represented Brazil at
the Disabled People’s International Latino
47
. More information can be obtained on
http://sentidos.uol.com.br/canais/materia.asp?codpag=5136&cod_canal=3, accessed on 7/
14/2009.
-Americana (DPI). In 1990, he and a couple of friends founded the Centro de
Documentação e Informação do Portador de Deficiência (Cedipod) – Center for
Documentation and Information Center for the Disabled, to disclose information on laws,
civil rights, transportation, and the elimination of architectural barriers.48
Image. Color photograph of Rui Bianchi do Nascimento. Rui is smiling.
Araci Nallin was born on May 22, 1957, and passed away on June 14, 1993, soon after
having obtained a master´s degree in psychology from the University of São Paulo. Her
dissertation was on “Reabilitação em Instituição: suas razões e procedimentos. Análise de
Representação do Discurso”, one of the most instigating and beautiful writings on the
issue of rehabilitation at institutions.
Image. Black and white photograph of Araci Nallin. Araci is smiling.
48
. More information can be obtained on http://www.cedipod.org.br/ and
http://www.centroruibianchi.sp.gov.br/; both sites were accessed on 7/12/2009.
Due to severe sequela resulting from poliomyelitis caught at the age of four, Araci
struggled enormously to lead an independent life style. In the late 1970s, Araci and a
couple of friends started a group focused on cultural and leisure activities. In 1980, she
joined other disabled persons to create the Núcleo de Integração de Deficientes (NID)
association, the objective of which was to fight for the rights of persons with disabilities.
Arana Rita de Paula, she created and participated in the Programa de Atenção à Saúde da
Pessoa Portadora de Deficiência do Estado de São Paulo state program for persons with
disabilities. A short while before she died, she became the coordinator of the same
program run by the City Government of São Paulo. The Centro de Vida Independente
Araci Nallin Center was named in homage to her.49
Francisco Augusto Vieira Nunes, nicknamed “Bacurau,” was diagnosed with
hanseniasis at the age of 10. He had to drop out of school on account of the disease. He
eventually got a teaching degree.
Image. Color photograph of Francisco Augusto Nunes, nicknamed “Bacurau.” Bacurau is
sitting at a desk, typing a text.
With the support of Thomas Frist, Francisco Augusto Nunes founded the Movimento de
Reintegração das Pessoas Atingidas pela Hanseníase (Morhan) movement for the
reintegration of persons with hanseniasis. Bacurau battled the prejudice and
discrimination that severely harm people with this disability. In 1981, he joined the
movement of persons with disabilities having become one of the movement´s most highly
respected leaders. He died from head and lung cancer in 1997, at the age of 57.
In the words of Ana Rita de Paula, who has a doctorate degree in social psychology and
is an activist in the Núcleo de Integração de Deficientes (NID)50 organization:
49
. More information can be obtained on http://www.cvi.org.br, accessed on 7/ 3/2009.
50
. I interviewed her for my doctorate thesis.
“We had strong leaders in the early days of the movement. They had this incredible
inner strength which was so amazing. I´m not talking about super heroes; I´m not talking
about people who accomplished grandiose, extraordinary achievements. I´m talking
about people who had the inner strength to deal with such adverse conditions on a daily
basis; I´m talking about people who built their lives in a constructive, interesting and
interactive manner under such highly adverse circumstances.”
I trust that this chapter honors the memory and the battle of all our “fundamental
leaders.”
Bibliography
ARAÚJO, Paulo Ferreira de. Deporto Adaptado no Brasil: origem, institucionalização e
futuro. Tese de Doutorado, Unicamp, Campinas, 1997.
FOUCAULT, Michel. História da Sexualidade, vol. 1. A vontade de Saber. Trad. Maria
Thereza da Costa Albuquerque e J.A. Guilhon Albuquerque. Rio de Janeiro, Edições
Graal, 2005. 16ª ed.
CRESPO, A.M.M. Da invisibilidade à construção da própria cidadania. Os obstáculos,
as estratégias e as conquistas do movimento social das pessoas com deficiência no
Brasil, através das histórias de vida de seus líderes. Tese de doutorado, FFLCH/USP,
2009.
FOUCAULT, Michel. Microfísica do poder. Roberto Machado (org. e trad). Edições
Graal, Rio de Janeiro, 2004. 20ª ed.
FOUCAULT, Michel. Em defesa da sociedade. Trad. Maria Ermantina Galvão. São
Paulo, Martins Fontes, 2002.
FOUCAULT. Michel. Vigiar e Punir. Trad. Raquel Ramalhete. Petrópolis, Editora
Vozes. 2004.
LUZ, M. T. As instituições médicas no Brasil: instituição e estratégia de hegemonia. Rio
de Janeiro: Graal, 1979.
MELO, Candido Pinto de. Portadores de Deficiência: Dez anos de lutas, vitórias e
poucas conquistas, 1990, mimeo. Documento lido e debatido durante Encontro Paulista
de Pessoas Deficientes, realizado em Jundiaí (SP), em 7 e 8 de abril de 1990 , que avaliou
os 10 anos do movimento.
NALLIN, Araci. A organização das pessoas deficientes: Reflexões sobre dez anos de
luta. São Paulo, 1990, (mimeo). Documento lido e debatido durante Encontro Paulista de
Pessoas Deficientes, realizado em Jundiaí (SP), em 7 e 8 de abril de 1990 , que avaliou os
10 anos do movimento.
OLIVA, Margarida, ROCHA, Guilherme Salgado. Um quarto com vista para o mundo, a
vida de Maria de Lourdes Guarda, São Paulo, Loyola, 1998.
SASSAKI, Romeu. Uma Breve História dos Movimentos de Pessoas com Deficiência,
1979, mimeo.
SASSAKI, Romeu Kazumi. Vida Independente – História, movimento, liderança,
conceito, filosofia e fundamentos. Reabilitação, emprego e terminologia, julho, 2003.
SASSAKI, Romeu Kazumi. Vida Independente na era da sociedade inclusiva. São Paulo,
RNR, 2004.
SILVA, Otto Marques da. A Epopéia Ignorada: A pessoa deficiente na história do mundo
de ontem e de hoje. São Paulo, Cedas, 1987.
CHAPTER
4
Making history: the social movement from
the viewpoint of its leaders
Interviews
History is done with written documents and
without written documents…. with everything that the skills of the historian allows
him to use to manufacture his honey when usual flowers are lacking - using words, signs,
landscapes and tiles, with the form of fields and weeds (…) in a word, as everything that
belongs to man, expresses the man, shows his presence and activities . tastes and ways
of being(54) Fever, 1949, ed. 1953, p. 428 apud Le Goff, 2003, p.530).
This chapter "Making history, as well as the chapter "Memories of Fight:
Protagonists of AIPD in Brazil" were prepared with first hand reports of the protagonists
of the social movement of the disabled in Brazil, using the reports of 23 persons.
Such reports have been organized as a kind of dialogue between the militants
regarding the issues mentioned by them in interviews made by the Project: Inclusion
Memories Database (Banco de Memórias da Inclusão). In "making history" we offer the
life stories of more than ten leaders.
Six reports are the result of Interviews carried out by the Inclusion Memories Database
of Memorial da Inclusão: Father Geraldo, Gilberto Frachetta, Isaura Helena Pozzatti,
José Roberto Amorim, Sandra de Sá Brito Maciel and Wilson Akio Kyomen. The other
four are interviews made for the PhD thesis of Lia Crespo with: Ana Rita de Paula,
Canrobert de Freitas Caires, Lilia Pinto Martins e Luiz Baggio Neto. These narratives are
the result of interviews encompassed as historical documents, having been worked upon
(55) reviewed, corrected, modified and acknowledged as being authentic by their
authors..
The oral history of life accounts is interested in the social conditions that have
influenced and gave meaning to unique lives and also tries to understand the nature of
groups through the history of individuals.
The raw material for oral history is the report built from the memories selected
by narrators. Therefore, it is not an objective, unconditional, exempt or impartial
recording. Much to the contrary, we only keep in our minds what is important to us.
Narrated memories change according to phases of life. It is not only the report of past
facts it also reveals the present and allows a glimpse into the future.
If the narrative of our personal history is a choice of what is sufficiently
important to be recorded in our memory, the history of groups is the sum of the records
that its members consider significant. The ability to share this memory, as producers and
receptors is what allows each one of us to belong to a group and to establish our
identity. The creative and dynamic sharing of the memory between the individual and the
group constitutes the social memory. Within oral history, due to the fact that the
individual does not represent the collective, nor the ensemble is homogeneous, there
may be and there are multiple histories.
It is important to stress something already mentioned in the first chapter, that
the Database of Inclusion Memories, represented in this phase of 33 interviews printed
in this book, appeared simultaneously with the Exhibit at Memorial da Inclusão: The
Paths of Persons with Disabilities.
Memorial da Inclusão (56) gathers documents (written documents, pictures,
minutes, book, magazines, videos and signs) kept for decades by the militants of the
social movement of the disabled. The protagonists of AIPD of "Making history" and
"Memories of the Fight" are praised at Memorial da Inclusão, and have closely followed
its inauguration. The close relation between the process of creation of Memorial da
Inclusão, with the historical narrative of documents about AIPD and the social movement
in Brazil, the oral history of the protagonists of this history, gives to the ensemble of
materials (exhibited documents and interviews) the peculiarity of giving a high
contribution to a more encompassing view of the fight and conquests of rights for the
disabled.
___________________________
(54) Le Goff, Jacques, História e Memoria, Trad. Irene Ferreira, Bernardo Leitão e Suzana Ferreira Borges, Ed. Unicamp.
(55) "to work an interview is equivalent to removing the scaffolding of a building when the building is ready" MEIHY, José
Carlos Sebe Bom. Manual de História Oral. São Paulo, Loyola, 2005.
(56) Whose story will be presented in the last chapter of this book
By mean of interviews, the claims, themes and discussions in the social
movement since AIPD convince due to the persuasion of what has been experienced.
From the 33 reports that compose this book that commemorates the 30th
anniversary of the AIPD, the other chapters also are documents written by militants of
the movement for the fight of the rights of the disabled: Elza Ambrósio, Romeu Sassaki,
Lia Crespo and Vanilton Senatore.
According to Bosi57, in order to really understand something, it is not sufficient to
have:
sympathy is (easy feeling) for the research objet, it is necessary to have a well rooted
understanding of common work, very similar living conditions (…) It is necessary to
have a communion of fates in order to achieve full comprehension of a certain human
condition. A communion of fates already excludes, by its own name, occasional visits or
temporary steps in the site of the research. It means to irreversibly suffer (…) the fate of
the study subjects (BOSI, 1987) (58)
Besides the unquestionable ink that gathers reports of militants and authors of
chapters - as it has inspired the creation of Memorial da Inclusão - the same communion
of spirit is shared by the other researchers involved in the project of the present book.
For them, "to irreversibly suffer the destination of the studied subjects" emerges from the
potential of the claims, the form of fight and the successes achieved by the disabled in
order to make our society more inclusive. Therefore, it is not about of conquests that
benefit only a certain segment of the society, but about every citizen.
You, reader, when you immerse yourself in these stories full of emotion and good humor,
also feel part of this new communion of fate.
_____________________
57. Writer and teacher at the Psychology Institute of the University of São Paulo (USP)
58. BOSI, E. Memoria e sociedade: Lembranças dos Velhos Tempos, T.A. Queiroz e Edusp, 1987
_
Ana Rita de Paula
Image: Color picture of Ana Rita de Paula
Text: AIPD has been extremely important for the organization and disclosure of the movements
of the disabled, because it meant the possibility of disclosing the needs, ideas and claims of the
disabled at worldwide level. For us, AIPD meant the increase and impulse of recently created
organizations"
y name us Ana Rita de Paula, I was born on January 26, 1962, I am a psychologist
and have a congenital progressive physical disability. I have qualities and defects. I
like to joke saying that among my defects I am too tolerant and impulsive. Among the
qualities I am too tolerant, sometimes bold, i.e., impulsive.
M
The issue of disability permeates my personal, academic and professional life. I live
disability in my day-to-day, as a person. I have used disability as the theme of my masters
and doctorate work; and professionally I've always worked - at the State Health Secretariat
and in the Social Solidarity Fund of the State of São Paulo - with the issues of the disabled.
In academic terms, during my M.A. course I wanted to understand the
experiences and social representations of the condition of women associated to disability. I
have interviewed physically disabled men and women to learn something about their life
stories. One of the things I have been able to conclude from this study is that at the same
time that being a woman and disabled are two factors of social disadvantage, one
overlaps the other, and therefore, impairing the other factor, this experience is considered
as an experience of compensation. At the same time that being a woman and disabled
overlaps in the negative aspect, sexuality for instance may be seen as something that
repairs and restores the person with disability. It is interesting to note how such opposite
situations and experiences happen sometimes within the same person. The same person
who feels extremely marginalized, reports situations where sexuality is experienced - as
being a female is good for the whole being as a person. This is very cool.
During the doctorate work, I've tried to show and disclose the degrading situation
of life of persons kept in institutions as completely institutionalized or in nursing homes. I
analyzed and described the daily lives of a populations living in such nursing homes in
São Paulo that does not exist any longer. A relevant feature that I've found out with this
work is that contrary to common thought, there are no specific nursing homes for the
disabled, or just for the elderly or psychiatric clinic for some with mental disorders. In
reality there is the nursing home that does not take into account these differences. At an
institution for the disabled, there are persons with physical disabilities, elderly, alcoholic
and psychotics. In the same manner, in a nursing home for the elderly, there are young
people with disabilities and sometimes even children. There is a mixture of people, a lack
of definition of the object of these institutions. What really exists is marginalization and
segregation as objects of the institutionalization. The abandonment and misery are the
real reasons for the institutionalization.
In the post-doc work I will continue this quest for the understanding of the process of
institutionalization started during the doctorate work. I will follow-up an institution in Salvador
which is already taking a series of actions and developing strategies to open up and dismantle
the mechanism of segregation and isolation, creating homes with support to enable these
persons to live in the community. My work will be to follow-up the Implementation process of
these Inclusive homes for the disabled. I also continue to work with the subject of my master's
work, i.e., with the issue of sexuality. I wrote a book "Sexualidade e deficiência: quebrando o
silêncio (Sexuality and Disability, breaking the silence) (Expressão e Arte, 2006), with the
purpose of having the society and professionals (not exactly those specializes in disability, but
teachers for instance) to reflect on human condition, therefore sexual condition, of the disabled.
In spite of the fact that today the discourse is more open, we still do not open up. It is
rare to mention intimate experiences. Therefore, is sexuality continues to be a taboo, when
there is disability associated, discuss the subject becomes even more difficult. But the situation
has changed a lot since 25 years ago, when the movement of the disabled started. Following
the changes of the ideas the society has of what is a disabled person, there also occurred a
change regarding the sexuality of the disabled. Nowadays a much lower number of persons
become amazed or indignant with a disabled person with an active sexual life, having children
and partners.
During my childhood or teen years I have never had contact with disabled persons.
This happened only in 1980, when I did my entrance examinations at the University of São
Paulo (USP) and Pontifical Catholic University (PUC). At that time (I don't know if the situation
has changed), persons with disability or any special needs, were placed in special rooms to
take the tests. At USP, intuitively I gathered names and addresses of persons to keep future
contacts. An incident happened at PUC: Edgar, one of the youngsters taking the tests had
brain palsy and was not able to write therefore he was claiming that someone wrote the test for
him. The coordination of the entrance examinations didn't allow such help and he failed in
composition, which ruled out any possibility of his admission at PUC. Those who were there
became indignant. But indignation was not enough. Indignation had to bring about some effect.
An attitude was needed. We've tried several things, among them talk with Dom Paulo Evaristo
Arns. Unfortunately we were unable to change the situation. Happily he passed the tests at
other university. I don't know what happened to him, I lost touch, but I hope he has graduated
and is doing well. This incident meant an important step for the creation a NGO for the defense
of the rights of the disabled.
After the entrance examination, I invited to my home some persons that I had met during
the examinations at PUC and USP. We created a group called NID - Center for the Integration of
the Disabled, that had the feature of mobilizing and denouncing the breach of rights and the
organization of the disabled to have them claim their needs with the executive power.
But at that time not only NID was being created, a series of other entities to claim
rights were also being created, not only in the field of disability. We were in a special historical
moment, when Brazil was experiencing political opening with the return of political refugees
that have received their amnesty. Numerous rights movement started at that time: of the
blacks, women, homosexuals, against high prices, etc. The disabled were organizing
themselves under that social climate. We started to have contacts with groups of disabled from
other states, such as Rio de Janeiro and Brasília,
I think that the first more significant event of our movement was the 1st National
Meeting of the Entities of the Disabled, that gathered between October 22 and 25 over 500
participants in Brasilia and established the goals of the national movement that was
crowned with the creation of the National Coalition of the Entities of the Disabled.
The disabled were able to organize this event with no sponsorship or support
from the executive or legislative powers or from entrepreneurs. Coming from different
Brazilian states, the participants travelled to the University of Brasília (UnB) that was
hosting the event, with resources from their communities of their cities or on their own
funds.
In the city they stayed in convents, sports and army lodgings. Many local families offered
rooms or even vacant apartments to lodge the participants. This was an interesting
experience also for the Brasília people who had the opportunity to live with the disabled.
After the first National Meeting - an extremely significant event - others with the
same features took place. And it was good to see that at each event the number of
participants was higher. The second National Meeting carried out in 1981, already
organized by the National Coalition (created during the Brasília event the year before) it
was called 1st Brazilian Congress of the Disabled, and gathered in Recife at an ample
venue almost 2,000 participants with approximately 600 disabled or more; the Recife
meeting was important and received much media attention at the time, moreover because
it happened In 1981, chosen by the UN as the International Year of Persons with
Disabilities (AIPD).
AIPD was extremely important for the organization and diffusion of the movement
of the disabled. It meant the possibility of disclosure of the movements of the disabled their needs, ideas and claims at worldwide level. For us, AIPD meant the growth and
impulse for the recently created organizations. These organizations were able to spread all
over the Brazilian territory and increase the possibility of exchanges among regional
movements.
For me, 1981 was a year full of activities it was the beginning of a new cycle of
life, for I had just been approved to the Psychology Institute of USP and was trying to
structure myself to live by myself. I was starting my adult life with much determination and
the huge possibilities which were opening for me. I was able to see in me an intention that
existed since my childhood: the idea of working the issue of disability, not just clinically as
a psychologist, but also as someone who could understand disability as a social and
historically built social phenomenon; as someone who could transform the individual and
personal dimension of the disability into a social and collective dimension. In this aspect
the international year was extremely important. It was when I started to assume myself as
a person, a citizen, a person with disability, a student and a home maker, as someone
who was assuming the responsibility for my own life.
In the last years, my disability progressed much and it is more difficult to go out,
so I estranged myself somewhat from the movements. This is why the event "AIPD 25
years later - The International Year of the Disabled in 2006: "Memories, Conquests and
the Future", which took place at the Araci Nallin Independent Life Center and a group of
supporting organizations on December 03 and 04 of 2006 in São Paulo was so moving. I
was able to gt together with persons whom I haven't seen for many years. Find this friends
and see these people happy in their careers was very moving. At the same time I was
moved to see those who entered the movement much later. There were also there
bringing their solidarity and celebrating with the so called "Jurassics". It was a very good
process that rekindled in me those ideals that moved me when I entered the University, I
was able to find again this energy, the utopia that has moved me then and still moves me
now.
AIPD and the national meetings were very important for the mobilization and
consolidation of the movement, and working in those movements meant a daily battle to
be fought. Also we had always to be alert regarding proposals from the government and
the legislative power, write frequently to newspapers in order to denounce, raise issues
and take ahead our claims in order to secure that they would become a reality. For such
purposes meetings were held that discussed the organization and mobilization of the
movement, state and municipal meetings that gave rise to the fight for rights councils with
the participation of representatives of the community . These councils intended to be an
entity of the executive power, whose decision process should be in the hands of the
disabled. It was supposed that the ideal would be to put together in these entities the
movements of the disabled, the institutions that provided services for the disabled and the
representatives of the executive power, i.e., of the State Secretariats, or in the municipal
scope, municipal secretariats.
In 1984, from September 21 to 23, was carried he 1st State Seminar of the
Disabled with 700 attendees, representing the disabled and services providers in the area
of disabilities from different cities of the State of São Palo. This seminar defined the state
policies regarding persons with disabilities and determined how should be the State
Council for the Disabled (CEAPD) and elected the councilors representing the civil society
for the first term of office, in that same year the then Governor, Franco Montoro, made
these decisions official by means of a Decree (59). Later, along the decade, other similar
councils have been created in different states, but CEAPD was the pioneering one.
However, to the contrary that one may imagine, it was a fierce fight to achieve the
installation if these councils and I may guarantee that It was a daily fight to work at
CEAPD, where I have been elected deputy councilor for the first term of office,
substituting whenever necessary Araci Nallin, main representative of NID.
At the CEAPD there were difficult fights for space and representation. These
were daily fights, apparently for small things, details, that deep down were very important.
(59) The State Council for the Issues of the Disabled, created by Clause 1 of Decree 23131 of December 19, 1984, was
named as State Council for the Issues of the Person with Disabilities (CEAPPD) as of enactment of Decree No. 40.495 of
November 29, 1995.
For instance, the meetings were scheduled for week days, because the
employees representing service providers and government employees wanted them to
take place during their usual working hours; however the disabled didn't work in the public
service, many had their careers and their employment had nothing to do with disabilities.
For these persons it was much complicated to miss work or ask to be exempted from work
to attend a meeting. However, government and service providers' representatives were the
majority and decided meetings would take place on business days and hours, impairing
the participation of the disabled.
Slowly we started to realize that small and big decisions ended up always
favoring government sectors and service providers' entities. One example of this fact was
the car issue. The state council gave a car to its board. The disabled claimed to receive a
van to transport people in wheel chairs, but Aida, then the chairman of the board, who
wasn't disabled and was a representative of the Social Promotion Secretariat demanded
and received a usual official not adapted car!
The election of the council board was a striking example of how the sectors that
represented the government and service providers dominated the decision making process
within the board in detriment of the interests of the disabled. Other managements confirmed
this trend, electing representatives of service providing entities; at that time, the periods when
the chairman was a disabled person, where short. However, it has to be clear that we did not
necessarily claimed that for the position of chairman of the board should be elected a disabled
person, but that the chairman should be someone who came from the movement of the
disabled. The issue was not to represent the disability in the board, but to have a
representative of the sector, to be member of the board. All those power disputes provoked
high levels of personal and group stress and the work of the council had difficulties to progress.
After the state council, at the end of 1985, in the city of São Paulo took place the
creation of the Municipal Council of the Disabled (CMPD) that worked only in 1986, during
Janio Quadro's term of office; and we knew that many other state and municipal council were
being created in Brazil.
Other type of important event for the movement were the seminars, congresses,
technical meetings that had the participation of militants from the movement of the disabled,
i.e., for the first time the disabled were being heard and discussing their issues. The rigid
division between the disabled, professionals and those who studied the area started to
disappear. These positions started to get mixed more and more with the appearance of the
disabled who have studied and became professionals in accessibility and rehabilitation for
instance, and started to discuss knowledgeably these issues in the Brazilian society
We from NID, for instance, and a branch from NID, GEAR - Study Group of
Rehabilitation Alternatives, with the support of the newspaper Folha de São Paulo, created a
seminar to discuss the model of help in rehabilitation and possible alternatives to this model,
considering that the criticism to the ongoing rehabilitation process, had been done with much
knowledge and depth by the movements.
Since then we had a series of explicit claims in the field of health, education, work,
accessibility, means of transportation, culture, sports, leisure activities, etc. In terms of health the
movements were already claiming that the public health network offered rehabilitation teams and
services free of charge at the basic health units. Basically, we were claiming for a diffusion of a
new model of care, in which the disabled would have an active and decisive voice in their own
rehabilitation process, a network with care hierarchy in the public system, with priority care to the
neediest persons.
In what concerns education, we were fighting for the so called integrated education,
today known as inclusive education. We were fighting for the creation, diffusion and
implementation of professionalizing courses, for the market opening to the disabled. We claimed
for sports and leisure areas that took into account the specific needs of the disabled. We wanted
transportation and public services to be accessible to all types of disabilities. One important claim
that is being met satisfactorily is the access to voting sites.
And with these claims we had concrete goals, as for instance including the voice of the
disabled as another social voice that should be heard with priority, in a privileged mode. We
didn't want that the claims of the disabled be left to a second plane, but included in government
and non-government programs and projects. Finally, we want to exercise our right to citizenship,
in a reality that did not respect the rights of almost everyone. This was something quite difficult to
achieve.
We had many documents with lists and lists of claims. But basically, we wanted the
rights and needs of the disabled be met in the same spaces of other persons; that these rights
be targeted by public policies that would warrant us the exercise of citizenship; that each
private individual could have a new space within the family, community and be acknowledged
as a person, a human being and that this would become a universal rule for all the disabled.
Most of all we claimed that the participation of the disabled be a natural demand, included in all
public policies, mainly those directly related to the disabled. Today this wish is translated into a
very happy phrase "Nothing about us without us"(60) . But in reality this concept already was
present since the beginning of the movement, and in this aspect we have had considerable
advances. We achieved concrete things as the increase of services along with a cultural
transformation.
Making a quick balance, if you ask a disabled person if his/her life has improved,
he/she may answer that it didn't improve much because the Brazilian social and economic
situation hasn't improved. Effectively we did not undergo an income distribution, a
decrease of social inequities, an improvement in healthcare, education and work. I believe
that this changed - if changed at all - very little. It is obvious that the issues of the disabled
are closely related to macro structural issues; therefore if these issues do not go forwards,
meeting the needs of the disabled is also impaired,
________________
60. In 2004," nothing about us without us" was chosen as the motto for the International Day of Persons with Disabilities
(December 3rd) proclaimed by the UN Genereal Meeting in October 1992 in order to promote the knowledge on issues
related to ersons with disabilities and to mobilize support In order to guarantee their dignity, rights and well-being. Each year
the UN chooses a special theme for the International Day of Persons with Disabilities.
There has been a radical change in the idea the society as a whole has of the
disabled. Our wish to transform the disabled, from mere spectators, patient and passive
beings into social agents effectively happened. For instance, the media, when dealing of
this issue, does not hear only the professionals, the academia and/or specialized
Institutions, but looks mainly and fundamentally to our movements. This is a fundamental
change.
Other important change was regarding accessibility. We were not able to make
the cities completely accessible, but doubtlessly today there are many more accessible
places than were present in those years. It is obvious that there are brand new buildings
that are not accessible. Even the University of São Paulo often times makes mistakes in
the refurbishing old or building new buildings. Obviously more has to be done, but decisive
steps have been given.
The issue of rehabilitation and health care is definitely focused in the public
network. Does this mean that all the disabled are cared for satisfactorily, with quality and
respect? As happens with the rest of the population, the answer is no. But at least we are
able to get in the line of lack or bad care that the population as a whole receives. And this
(although seems crazy) is an advance, because previously the basic health unit was not,
or nor thought of as, a place that could be attended by the disabled. There were no
adapted bathrooms for instance, and we didn't even have a place in its long lines. Today,
the disabled at least have the possibility to get in line.
Today in Brazil education is at the same level of many developed countries that
implement Inclusive Education in their educational systems. It is obvious that this is just
the start. We are still experimenting ways to make this real in practice, but we are working
to achieve it. Yesterday I received a piece of good news : for the first time In the state of
São Paulo we will have more disabled students served by the public network of schools
that by specialized institutions; however the resources destined to specialized institutions
is the triple to those destined to public service. This proves the wrong argument that public
service serves badly spending too much money. The public service still gives poor
services, but serves many people at a very low cost. If we are able to change this, and at
least, share more equally the resources, we will be in condition to improve public
education, for what happens with the disabled, in truth is an example of what happens with
students in general.
Regarding the labor market, it is undeniable that today, companies are searching
for the disabled, if only to meet law requirements (61).But this change in the labor market
was the result of the enactment of a law. But this legislation was needed so that a new
order, a new logic would be established in the marketplace and these people would have
___________________________
(61) Law 8213 of 1991
their work guaranteed. If we continue along this line, we will have disabled people
participating in equal condition to other citizens.
An area were evolution was negligible is transportation, because it is based on
high cost technological development. For a developing country as Brazil, it is very difficult
to have these claims becoming reality. But this should not discourage the movement
leaders; on the contrary, we have to concentrate more on this issue.
In the beginning of the movement, we had very important leaders, who had huge
personal strength, and I don't mean super heroes or people who stand out for grandiose
achievements. I am talking of people who have the strength to deal with very adverse dayto-day conditions, who built their lives in a participative manner within adverse
environment.
Today things are easier and the disabled have more educational, professional,
affective and sexual possibilities. The movement leaders lived much tougher situations.
Two persons have been the most important representatives of such strength: one was
Maria de Lourdes Guarda who lived a severe disabling condition, and without large
financial resources, reorganized her life and brought with her many people whom she
retrieved from stagnation, the other was Cândido de Pinto Melo, for his political and
humanistic viewpoints - the was able to put together human rights policies in general with
the policy of rights of the disabled. He was the embodiment of these two fights in one.
After a demobilizing process of the disabled, today we are living a different
historical moment. It is undeniable that many years have elapsed since the start of the
movement to fight for direct elections. Since then, except for the president's Fernando
Collor Impeachment, we haven't experienced anything so collectively strong, and
unfortunately people demobilized, but there is nothing to lament. I believe that today one
has to face facts as they develop. Today there are disabled with important positions in the
government, and we should start to work from then on, obviously without the
disappearance of the movements, but keeping this little light constantly burning.
I believe that one of our main conquests is that our destiny is more strongly tied
and closer to the destination of the population as a whole. The future of the disabled
fundamentally depends of Brazil's future. It seems obvious to say it nowadays, but in the
past years it was not so obvious. Some time ago, if there were social advances, this would
mean advances to some people, and probably not for the disabled, who were always left
aside. Today I believe that social advances encompass more the disabled.
Today much is said about inclusion, but we used to say the same things 26 years
ago. In truth, I believe that a story is not developed by ruptures. Movements do not rupture
previous existing situations. Well, sometimes they do rupture, but most of times there is a
slow gradual transformation in which an idea starts a long time beforehand, develops and
is implemented later. I don't believe in revolutions, but in construction.
Image. Newspaper Diário Popular, July24,1980.
“Headline: Physically disabled: all difficulties discussed, fight for rehabilitation continues”
The creation of a national coalition of entities that are dedicated to the rehabilitation of the physically disabled; the creation of the
International Year of Persons with Disabilities; the inclusion of a subject of rehabilitation of physically disabled individuals in the
curricula of medical, psychology, social service, education, nursing and occupational therapy courses; the awareness that physically
disabled individuals have productive capabilities; the changes and adaptations in roads and streets signage; the increase of tax
incentives to companies who hire physical disabled individuals in their staffs, are some of the proposals of the 2 nd Brazilian Congress
of the Physically Disabled that took place at the Pontifical Catholic University of São Paulo from the 21st until yesterday.
The physically or visually disabled according to Maria da Penha Boucinhas, in charge of the pilot Project that the Traffic Engineering
Company (CET) is implementing “have many locomotion problems in a city like São Paulo. A normal persons moves at a speed of 1.3
m/sec., while a disabled at 0.45 m/sec. In order to meet these needs, CET has created a pilot program of special routes that works in
the proximity of Lar Escola São Francisco”
Labor Market: “ Labor Market is saturated in many sectors and closed in other, explains Laurecy Mello Ribeiro, Multi-Empregos
(Multi-Jobs) technician from SENAC – for the physically disabled the situation gets worse, not only due to the disability but by the
construction of the buildings. Besides there are transportation and locomotion difficulties as well as all other problems of large cities”
Laurecy Ribeiro has worked for 10 years in the rehabilitation of physically disabled, and due to her experience in the field she was
invited to participate from the Congress. For her “it is necessary to sensitize the entrepreneur that the physically disabled individual
has productive capacity, provided he gets a job compatible with the disability”.
Law 6297 provides that all expenses with personnel training are to be discounted from the Income Tax due by the companies. The
Congress of the Disabled proposed that the law be extended also to the training of the disabled.
Sexuality: “when one speaks about the physically disabled all aspects are discussed, from architectural barriers to labor Market, except
for a taboo subject, vital to every human being: sexuality” stated Ana Maria Moraes Crespo, 26 years old, single, journalist, physically
disabled. “No one touches the subject, as if we were asexual beings”
Maria Cristina Corrêa, 26 years, law student, endorses: “What men first see in women, is their whole bodies, and we have many
disadvantage points compared to other women. Men always see us as friends, nothing else:
To Luis Celso Marcondes Moura, 35, married, psychologist and physically disabled “the biggest problem is in the acceptance of the
disability by the disabled. It is not easy to find people who see other qualities that are not the physical ones (which at the first moment
are important), it is really difficult to the not disabled to find character values in the physically disabled. What counts is the maturity of
people”
Source: Newspaper Diário Popular, July 24, 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspaper Shopping News – City News. September18, 1982.
Headline : “Disabled Persons: Instead of asking, not they will make demands to politians” by Fernando Barros. It contains a black and
white picture of a woman in a wheelchair, with the caption: Ana Rita: “We have a long way ahead of us”
The disabled of São Paulo will keep an exchange with political parties. Thus, they hope to achieve the creation of efficient laws,
running away from demagogy. The debates cycle “political parties and the issues of the disabled” will be opened on Thursday at 08:00
p.m. at São Luis Parish (Rua Bela Cintra 985), with the presence of Hélio Bicudo, Sérgio Santos and Erothildes Medeiros, respectively
candidates to governor, state congressman and councilman for Partido dos Trabalhadores (PT – Workers Party), and may be seen as a
sign of mentality change according to the organizers of the event from the Center for the Integration of the Disabled (NID). “The
disabled are stopping to see politians to request favors, within a mind view of welfarism and charity. We want to change this and
create the image of the disabled as part of the social and political process” states Ana Rita de Paula, the group’s representative.
She and her companions intend to hear the plans of each party regarding their relationship with the community and also make their
claims be heard, thus avoiding that laws are created top down, without the necessary knowledge of the issues. She also states that
“ample debate decreases the possibility of the demagogic use of the claims, which by the way are numerous.
At the meeting with politians, the organizers intend to expose the need of opening classes for mentally disabled subjects in public
schools (“the segregation in special schools is an absurdity, states Ana Paula) where architectural barriers prevents the attendance of
the physically disabled, and the lack of skilled teachers marginalizes visually and hearing impaired individuals. Also the labor issue
will be tacked: “if unemployment is already big, imagine our situation” states the NID’s representative. In her opinion, the lack of
opportunity pushed most of the disabled to underemployment: “they are not at street corners selling candy because they like to, but it’s
what is left to them, and this reinforces the image of the disabled as being the pitiful”
As to wages, also will be presented a picture where discrimination prevails – the same discrimination that takes place with women and
blacks” says Ana. With regards to transportation, the need of adaptations will be defended. Another proposal in the agenda is the
elimination of taxes or creation of subsidies for plants that manufacture special equipment for the disabled, for a simple wheelchair
costs about Cr$ 100 thousand.
Mobilizing and creating awareness: NID intends to take to political parties its worry with the small number of existing rehabilitation
centers, almost all of private nature. “We pay taxes as anyone else, therefore these services should be provided by the State” says Ana
Rita. In her opinion, prevention should be better studied: “isolated campaigns do not solve the problem. The number of disabled is
directly linked to life conditions. It is necessary to improve sanitation and supply services.
According to a UN estimate, 10% of the population of any country is made of disabled. Taking into account the existence of such an
expressive group, NID is making efforts to mobilize these people and create awareness in the general population – something that in
her opinion, only wide debate may achieve. “We have a long way ahead of us” says Ana Rita, reminding that the cycle to be
inaugurated on Thursday represents a landmark: for the first time, the disabled take the initiative of a political action. After all, she
says, “we have the right to decide about our lives”.
NID is carrying out a series of lectures and seminars related to the issues of the disabled as well of study groups to carry out projects
aiming the conquest of rights for the disabled
Last year, a guide for leisure activities for the disabled in São Paulo has been prepared mentioning accessible movie houses, libraries,
museums, theaters, restaurant and parks. When the guide was ready, NID concluded that at the same time, other problems had to be
solved, as for instance the lack of adequate means of transportation to reach those places. “No isolated attitude will become a
solution”, therefore the entity decided to extend an invitation to politians but up to now, only PT accepted the invitation. But the NID
representative states that there is no hurry: “we have until November to wait for the manifestation of the other political parties”.
Media: Newspaper Shopping News, July 18, 1982.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Black and White Picture.
Meeting table with a lace tablecloth. On the wall, behind the table, there is a banner with the wording” International Year of Persons
with Disabilities” – Full participation and equality and AIPD’s symbol.
Headline: Preparatory meeting for the AIPD on January 26, 1980 at Colégio Anchietanum/SP.
At the table are: Ana Rita de Paula, Leila Bernaba Jorge, Adolfo Perez Esquivel and Lia Crespo.
Digital collection: Memorial da Inclusão
Donation: Lia Crespo
Image: color picture. Twenty people pose for a picture in a hall.
Headline: 2nd Brazilian Congress on Social Reintegration, July 1980, Pontifical Catholic University (PUC) São Paulo. Otto Marques
da Silva, Araci Nallin, Luiz Celso Marcondes de Moura, Romeu Sassaki, Marisa Paro and Ana Rita de Paula.
Digital collection: Memorial da Inclusão
Donation: Lia Crespo
Canrobert de Freitas Caires
Image: Color picture of Canrobert de Freitas Caires.
Heading: “AIPD made the difference, if the UN had not declared 1981as the International Year, all and any movement that we had
done at that moment, would have been something localized. It would not have the repercussion it had, with the support of the press,
mobilization of the society, national and international authorities”.
've suffered an accident in 1973 diving in a swimming pool. At the time I was 16, lived
in Araçatuba in the interior of the State of São Paulo and was a member of the
swimming team of the Corinthians team of that city. On a Sunday, when there was no
competition, I dived and hit my face on the shoulder of a team mate that was swimming.
I suffered a compression between the 6th and 7th cervical vertebrae. At the time there
was total paralysis, i.e., tetraplegia. I stayed at the hospital for four days, but the medical
team believed they had no conditions to treat me there, and referred me to the Clinics
Hospital in São Paulo on January 11 and I ended being discharged on December 11,
1973. I even joke with the physicians saying: don't forget that I have a year of
"residence" at the Clinics Hospital.
I
My brother and father remained in Araçatuba. With me came my mother and
sisters. While I stayed at the hospital, they stayed at the house of a relative. In
December, they rented a house In Pinheiros to be close to the hospital. When I was
discharged I went to that house and spent 5 or 6 years going to the outpatient clinic of
the hospital.
At the beginning the doctors forecasted that I would be bedridden forever. I
thought that was impossible and made a bet with them that that would not be the
situation. I believe that from that moment on, my relationship with the disability turned
into positive thoughts. I was not fighting against disability anymore, but to win a bet!
When the doctors said that I could start to go out, move to a wheelchair, my
friends from the club in Araçatuba organized a party, raised money and bought me a
very beautiful wheelchair equipped with headrest. The day they brought the chair to the
infirmary I cried out of emotion. I called everyone to see what a beautiful wheelchair I
have received. I had the good fortune or happiness to change the focus of things: I
hadn't lost all, I was conquering something. My relationship with the disability has always
been one of conquests and not losses.
At the time there were other family problems. My father was becoming ever
more distant from us. This contributed to turn away the family's attention and my
experience received only the right measure of worry and family planning. I believe that
we managed everything very well. We did not dramatize events. We would face and fight
them. I only resumed my studies in 1975 with my sister's help who on the way to school
would sit on the wheelchair going downhill and pushed me uphill. We always laughed
hard about the possibility of upturning the chair. Sometimes people don't believe when I
tell the story but we had a very good time, we were experiencing a great adventure.
When we arrived in São Paulo, we were all very rednecks. My sister swore that
Araçatuba had a subway since many years. She would mix subways with trains. My
mother had more problems to face because besides the separation from my father, she
saw her youngest child in that situation. She had to assume a good part of the
responsibilities. For her it was more dramatic, as it always happens to every mother
when something happens that Involves one of her offspring; my sisters and me, we
didn't face any problem at all.
Strangers never understand when I say it, but I didn't dramatize my disability.
Any person who had contact with me at that time may testify that I am not minimizing or
sublimating the situation.
Around 1978 when I was accepted at the Vergueiro Professional Rehabilitation
Division (DRPV) which became the Rehabilitation Medicine Division (DMR) (62) of the
Clinics Hospital - a professional there, I good friend to this date, said to me: "Can this is
not possible. You're undergoing such a great crisis, you must be sublimating!" and I
would answer: "But I am not undergoing a crisis! I was supposed to be bedridden and
am living well, for me everything is great!" I believe that being a practical and objective
person helped me a lot. It must be very difficult to those who resist to something which is
inevitable. I believe that people suffer much more than I have suffered.
Until the accident, I was a middle class kid much worried with swimming
contests. Afterwards, I started to have a more critical view of politics, social issues. All
my friends had remained in Araçatuba. I didn't have my own friends. I befriended the
friends my sisters had here in São Paulo. At DRPV for the first time I had the opportunity
to make new friends. I arrived in the morning and left at the end of the day. There was a
team of young and idealistic professionals. Our relationships went beyond the
patient/professional relationship. Since then we cultivate these friendships.
At the Clinics Hospital there was solely and exclusively physical rehabilitation,
but at the Vergueiro unit is was different. There was even the story of the disabled
person who gave the plot of land, provided DRPV would make professional
rehabilitation. There was a very large workshop with carpentry and other type of
activities. I ended up being referred to a mechanical drawing course and tool designer at
Senai.
----------------------------------(62) The division of Rehabilitation Medicine is a unit of the Clinics Hospital, inaugurated on January 13, 1975, initially
called Vergueiro Professional Rehabilitation Division (DRPV) and served people with disabilities during the productive
phase of their lives, aimed professional training and the insertion of these patients in the labor market. On 07/18/1994 it's
name was changed to Rehabilitation Meticine Division - DMR, http:///www.hcnet.usp.br/haux/dmr/.
At DRPV, we were experiencing a very fertile moment. There was a team of
professionals and a team of patients, clients, willing a different approach to the
rehabilitation issue. The professionals who worked there remember of that time as the
best phase of the rehabilitation center.
At that time the organizations of the disabled were very rare. We knew only
Abradef (Brazilian Association of the Physically Disabled), which was not a very good
example to be followed. Extra officially stimulated by the physiotherapist s and social
workers from DRPV, who could not be professionally involved, we started to think
about the need of an association to defend our rights. It is difficult to know if the idea
came from the professionals or patients, because everything was so effervescent at
the time. Perhaps, all of a sudden, on a Saturday evening, on one of our outings to
have a beer, we've asked ourselves: Why not? Why should we not make our own
claims and fight for our rights? I believe that this was how the idea surfaced. At t he
beginning it was Leila Barnaba, Jorge and myself. Later other persons joined us such
as Rui Binachi and a quite interesting group of people; thus, around 1978 Aide
(Association for the Integration of the Disabled) was created (63), a legalized entity,
established, registered with tax payer's list number, social security registration, etc. To
the best of my knowledge, it was one of the first, if not the first entity to serve all types
of disabilities.
After about one year, we heard about a group who held meetings, if I am not
wrong, at one of the rooms of FMU (United Metropolitan Schools). We started then to
participate in the meetings of MDPD (Movement for the Rights of the Disabled) that have
this feature of being rally a movement, not legally established. It was an arena from
which took part all persons and mobilized entities in that "uprising of the seated". It was a
space open to everyone. As 1981 was at hand, the year declared by the United Nations
as the International Year of persons with Disabilities (AIPD), we took everything very
seriously. Aide meetings were marked by different periods, so that we could take part of
the FMU meetings as well.
When we took part in the movement's meetings, we raised the voice of Aide - it
was not the voice of Canrobert, Rui or Leila, but the voice of the legal entity of the group.
After about four or five years, MDPD felt the need of being legally established and Aide
was having difficulties in keeping a representative number of participants, there was a
merger, and MDPD assumed the Tax Payer's List Number of Aide (64). But at the
moment MDPD became a legally constituted entity, it stopped being that arena in which
all entities gathered and started to loose strength.
_______________________
63. Although in the name of the entity there is no circumflex accent, Canrobert pronounces the name of the entity as Aidê,
according to him to differentiate it from its sister entity, Aide.
64. In the minutes of 01/09/1982, published In the Official Gazette of the State of São Paulo of 07/14/1982, Aide approved
the draft of the Program Letter of the entity, which changed its name to Movement for the Rights of Persons with
Disabilities - MDPD.
Things were difficult at that time. To give an Idea, after I became disabled I
never studied at a school where I could use the rest rooms! At the Fernão Dias school in
Pinheiros, I went in through a small door at the back of the school. I had to arrive half an
hour early and shout in the hope someone would hear and tell the person in charge to
open the gate.
Even considering that we have not achieved all what we've dreamt with, now we
are in a completely different reality. If for some people it is still bad, they have no idea
how this reality was much more complicated. We didn't have a legislation that would
focus our rights. No bus was adapted. We still do not have the quantity and quality of
accessible buses we'd like to have, but now we have more than 500 adapted buses.
This is a small number I know, but presently we even have clinical labs adapted; today
you may have a lab test done with some comfort and no embarrassment due to the fact
there are no available toilets. We underwent a very large transformation; nowadays the
reality is less cruel for those people who are slight out of the standards.
When we started at Aide, we didn't have a ready idea of which rights we were
claiming to obtain. It may seem funny but we didn't speak in rights. The ideas were
polished at the MDPD fierce meetings when we all discussed and fought. We didn't see
eye to eye regarding many of the issues. This was when started many "why not's?";
someone would ask: "are we going to request this?; and someone else answered: "why
not?" ; we were always surprised even with one's own ideas. I remember the first time I
heard in "adapt all buses", this for me seemed like "gee, guy wake up" for it was so
utopic, imagine adapting all buses, no one will do it!; but then someone would voice a
"why not?"; Access to public spaces for everyone? Why not?; and so on.
The issue of quotas for the disabled in companies for instance, till today is a
polemic issue, but why not? it is changing the life reality of a lot of people, then why not?
About the social role of companies: at some moment someone mentioned work
vacations, and then there was surprise in the air, until someone said, why not?
I believe we had many "why not's?" at our meetings, we have matured with the
evolution of the movement, we grow at and with the movement. Little by little we worked
on and enlarged the scope of our claims. Why not change state and municipal laws?
Why not take part of the meetings to define the Constitution and make our rights
recorded there in?
In 1980 I went to the 1st National Meeting of Entities of the Disabled that took place from
October 22 to 25 in Brasília. In 1981 I participated from the national meeting in Recife
(65). The meeting took place at a time by brother lived in Recife, which made things
easier because there were few lodging spaces. It was a fantastic meeting. I stayed at
one of my aunt's that ended up becoming angry with me, because in the last days I got a
girlfriend and decided to stay at the lodgings.
_______________
65. This meeting was called 1st National Congress of the Disabled, organized by the Coalition Pro Federation of Entities of the
Disabled, it took place between October 26 and 30 and according to news published in newspaper Folha de São Paulo on 08/14/81 had
the support of the National Committee of the International Year of Persons with Disabilities and the government of the State of
Pernambuco)
She was even angrier because the girlfriend was from the state of São Paulo, she told
me: "but son, you come here to get involved with a girl from S. Paulo, this is a dishonor
to the local girls!".
At those meetings the impression was that we were at a war refugee camp.
Perhaps some 10% of people had some benefits, but the majority of the 500 attendees
were very humble people, the humblest I've seen in my life since then. You look at them
and were surprised; "wow, are there so many disabled in Brazil?", and that was a tiniest
sample of the real population of the disabled. Just to see that sea of amputees and
people in wheelchairs caused me a deep cultural shock.
It looked like the entire Brazilian population was disabled. The first impression
of the meetings in Brasília and Recife was a deep shock for me. The people from the
North and Northeast regions showed us a completely different reality, although the
problems were the same, i.e., lack of access to buildings, public transportation, etc., the
degree of difficulties faced by these persons was much higher. At the Recife or Brasília
meetings I met a youngster who lived in a stilt house. I can't see myself in a wheelchair
and surviving in those conditions. I felt very bourgeois at those meetings. I would come
and go by car, I slept at my brother's apartment, we got tickets and flew in - there we
were told that people had arrived in vans, trucks, open trucks, etc. The people from the
Amazon region, travelled many days in canoes or boats to reach a city and from there
numerous other modes of transportation to arrive to the meeting site.
At one of these meetings I got in touch with a person from the hinterlands of the
state of Goiás who hasn't left his house for 20 years - this meant that people were
confined. We saw those things and felt little with regards to the courage and resistance
of those people. At the same time there was a feeling of price for witnessing such
humble people standing up, and fighting for their rights. There were moments when I
shed tears seeing these people so seriously involved and willing to do all and any type of
sacrifice to arrive and voice their thoughts - that was extremely moving.
Today people don't believe what we did to get organized. Even in São Paulo,
the largest city of Latin America, with the technological pole we had, with differentiated
resources from the rest of the country, there were huge difficulties to get a space where
we could gather. We held meetings at universities, associations, churches, etc.
Locomotion hurdles bound us to a "via sacra". Those who owned cars would pick up as
many other people as possible, sometimes the driver would do two or three trips. At least
in São Paulo you get in touch with companies, with the city hall and you get an Atende
(66) car. There is a reasonable number of buses more or less adapted. It makes our
lives easier, there was nothing available then. People would drag themselves for four or
five blocks to get to the meeting places.
-----------------------------------66.The Special Service Atende was created by Decree No. 36071 of May 09, 1886. It is a door to door transportation
modality, free of charge, with its own regulations, offered by the Municipality of the City of São Paulo for persons with
severe physical disabilities and high degree of dependence who are unable to use other means of public transportation.
Those meetings were a kind of rebirth, something fantastic. It would be very
difficult to reproduce that atmosphere, when were added resistance to dictatorship and
the possibility to aim for a better world in all aspects. Everything conjured to have the
movement happen. The same happened in literature, music, theater, movies. It was as if
everything was inside a pressure cooker that burst at that moment. I am proud to have
been part of that movement. It added meaning to my life; just for the experience of
mobilizing persons with disabilities would be worth living ten lives exactly as the one I'm
living.
We had a disposition to transfer tragedy into comedy. Everything was a reason
to celebrate. We fought at the meetings and later went to a cafeteria with Maria de
Lourdes Guarda on a stretcher. All of a sudden would arrive 20 or 30 people: 10 in
wheelchairs, 1 on a stretcher, blind, deaf…. The people from the eatery would have their
hairs standing on their heads! But it has been a fantastic experience. Everything that will
happen now will be a small reproduction of what happened at that time.
Here in São Paulo we've hed many round tables with CREA (67) as well as
representatives of other professional categories. I had several meetings with DETRAN
(68) to discuss their lack of common sense when they evaluated a person with disability
at the moment of giving her a driver's license.
I had the good fortune to receive a phone call from one of the occupational
therapists from Vergueiro, Ilíada Cardiária, who told me that she became aware that
Banco Real was hiring persons with disabilities, and asked me if I wouldn't go for a
interview. I went, was approved and started to work at the bank that had adapted
bathrooms! Justice be made, Banco Real was one of the first large companies that made
the necessary adaptations to hire persons with disabilities.
That was a very interesting period. The boss was very proud of himself, and
all of a sudden the telephone would ring and he would say: "Can, it's from the
Governor's office, they want to talk to you", although it was funny to see the boss in
that situation, for me it created an unnecessary resistance at the bank, because your
immediate boss would become nervous when you had these type of connections. In
1981 Maluf was the Governor he created the State Committee for the Support and
Stimulus to the International Year. I remember this very well because it has been very
important in our history. We always had a great resistance in dealing with Maluf due to
his political roots and demagogic behavior which we disliked. There were times when
face to his "well intentioned" proposals we had to make It crystal clear that according
to our by-laws we couldn't have any political position; then Maluf would tap our
shoulders and said "Then I'm sorry there is nothing we can do for you".
We were starting to leave the authoritarian regime and Maluf represented
everything the society rejected. We used to have huge discussion to decide who would
meet him. Most people said "I don't want to see that man in front of me". Facing Maluf
was to stand before everything we condemned. It was difficult to negotiate, participate
in the meetings or take pictures with him.
____________________________
67. CREA - Regional Council of Engineering, Architecture and Agronomy of the State of São Paulo.
68. DETRAN - Traffic Department
We were very afraid to give the impression that we were promoting his actions as
Governor. But, justice be made, as it was him, it could have been any other of our
"external enemies" that united us and with whom we would have to fight to change the
situation of persons with disabilities.
Today I laugh when I remember the first idea I had regarding the dictatorship. I
was a kid in Araçatuba and a neighbor of mine had a dog, one of those beautiful
German shepherds, he called Castelo. One day, playing I innocently called the dog
"President". My friend's father was panic stricken, took me by my shirt's collar and said
"Never ever I want to hear you saying such a thing!" At the time Brazil's President was
Castelo Branco (69). Until then, in my opinion, the country was ruled by a figure that was
distant, could be a king or a prince; thereafter I always took care not to call Castelo (the
dog) President. But sometimes when the dog and I were alone I would whisper in the
dog's ear "President"!
In the hinterlands of the state of São Paulo brain washing was well done. Any
student manifestation was qualified as "hooligan's doing". The parents were always very
afraid of the closeness with "hooligans". We often heard: "if they come around, you cross
the street. No talking to them". The same recommendation was made regarding
separated women and Alan Kardec followers. That was a very catholic region. I suffered
very much when the oldest brother of a friend became a victim of the dictatorship, he
was a student who had been arrested, tortured with electric shocks, and became a
mental wreck. My family had a traditional culture and didn't have a critical understanding
of the situation. I was warned to avoid getting close to that family, but at the same time I
saw the suffering of Elder and his mother's.
When I met Cândido Pinto de Melo, I was shocked to find out that he was one
of the "hooligans" and that was the reason he became paraplegic; it was as an
earthquake had hit my brain. Getting to know Candido's story was unveiling that hidden
side that I couldn't understand as a teenager, I found out I had been misled all my life.
For me Cândido has always been a myth, I was never able to see him as an
equal, a peer. Keeping due proportions, in terms of representativeness, getting to know
Cândido, was like meeting Che Guevara. Cândido was at a different level. His private life
did not exist. He was one of those persons unable to separate his private life from the
political life, it was all the same. A few times we had different opinions. This difficulty in
communication happened perhaps because for me, he was above us, or because we
were unable to understand what he was trying to explain. It is difficult to talk to someone
you admire very much. Fate was not fair to Cândido, I believe he should have ended as
congressman or some other position that would make justice to the role he performed in
our recent history.
_________________________
69. Marshall Humberto de Alencar Castelo Branco was the first president of the military dictatorship after the military coup of
1964.
For me AIPD was a turning point. The Canrobert before 1981 and Canrobert
after 1981 are completely different personas. In that year we started to discuss a much
deeper plan, something even bigger that we had imagined. We started to speak about
the Constitution, more encompassing laws we discussed deeper and more important
issues. We spoke of a different country and of how we could have an active participation
in such a country. We would not wait the entities who "kept" the disabled to take care of
them. We wanted to define our roles and decide our own destinies.
I have been a landmark. The new militants - disabled persons who are starting
to get involved with the movement - have to have a notion of the amplitude of the years
1980, 1981 and 1982. It's been a bonfire, whose flame was on until 1988 when we've
been able to raise more than one million signatures to take our claims to the National
Meeting discussing the future Constitution.
AIPD made the difference. If UN had not declared 1981 as the International
Year, all and any movement that we'd have done at that time would have been
something localized, wouldn't have the same repercussion with press support and the
involvement of the society, national and international authorities. We carried out national
meetings and although we didn't take part, international meetings also took place.
AIPD was a powerful amplifier for our claims. The meeting of Aide with the
movement was to enable us to prepare for AIPD. We didn't even think of 1988, because
this year didn't exist in our Imagination - we were focused in preparing for the AIPD. If not
for the AIPD, Aide might have been just another entity. Due to the AIPD we stopped petty
discussions and started to discuss municipal and state laws as well as the Constitution.
Everything was the direct result of 1981.
The years 1980 and 1981 were rich years, even in terms of conflicts. I remember
the many meetings we had with Rede Globo (leading TV network) to discuss the vignettes
for 1981 that they would air. Our fight was to prevent them to disclosed biased and
maudlin ideas. We had to convince them to show persons with disabilities in a positive
way. I personally didn't attend those meetings, but I took part from meetings where our
representatives discussed these issues among us. Spirits got hot because what we were
discussing was very subjective. Up to which point the focus of a camera or a certain image
was negative or not? There was no rule to be followed. That has never been done before,
and really the discussions were fierce.
The year of 1981 remained as a reference of the social reality we experienced
then. During AIPD there was the shock between the old and new cultures, and the
culture that would prevail from then on. As of 1981 nothing would be as before. We
clearly showed that we were grounding our own foundations and we didn't want to be
sponsored or patronized.
All internal and external confrontation served to strengthen the movement. The
event to celebrate the 25th anniversary of the AIPD, in 2006, in São Paulo was a travel
into the tunnel of time. It was moving to find old time friends and get to know that those
who passed away have not been forgotten. I believe that few times in my life I had such
strong emotions. The friendships we made at that time are still alive, for they have been
built on top of a solidary movement. We were all in the same boat, one helping the other.
We shared what we had and collected money to pay for expenses. This made
relationships stronger. Those who at that time had many differences and lived in
permanent conflict nowadays are big friends. We screamed loud when everyone wanted
us to stay quiet and well behaved. It was a very rich adventure for all of us. In the social
aspect I believe that many things didn't happen as we would like them to happen, but in
personal terms, I have no complaints.
For me the movement went much beyond my expectations. In the existential
aspects, my gains were many, be it well understood that there have been no financial
gains - much to the contrary, I paid to take part. The ends didn't meet and we would put
our own money in, and the situation has not changed until today.
In 1986, at the time councils started to be created, MDPD already had
incorporated Aide and I rarely would come to São Paulo. Who took part of the councils
were Gilberto and Galeno. I don't know if the results were what we had expected, but the
councils were useful, after ours were created the Council for the Elderly and for the
Women…
I don't know if the same happened with the councils of other social segments,
but in São Paulo there has been a political and party related use the councils, that ended
up deforming the role that the municipal and state councils for the disabled could have.
In my view point there were failures both on part of the disabled as well as on part of
politians who manipulated the council so that representatives they were interested in
could be elected.
On the other hand the disabled created an exaggerated shield regarding some
politians. I remember some representatives of the disabled who were council members
but refused to take part in meetings with Maluf who at the time was the city's mayor. I my
opinion that was wrong, when you represent an entity a council or whatever, you cannot
face things from your personal viewpoint. You are not representing yourself, but the
organization, the legal entity. The division into parties impaired the performance of the
councils. I do criticize very carefully because I've never been a counselor and I wasn't
there and didn't experience these facts. I have to right to acutely criticize something I
didn't take part of. I have not collaborated to have things happen in a different way; but I
make this evaluation as someone who knew the movement and its participants.
Today it is very difficult to get people together and mobilize them. I have not yet
been able to have a clear understanding of the present moment. I don't know that this Is
a hangover of a very fertile period or lack of leadership renewals - There is this
dispersion, weakening. In the past, artists made an album and you rushed to buy it, from
11 or 12 songs, you'd fall in love with 8 of them. Today to pick 2 or 3 you like, you have
to make a deep search.
After the political opening in the 1990's on, each person settled in his/her own
corner. In our group, except for half a dozen people who are almost preachers - the rest
settled down. The lack of expectations or the lack of an enemy reduced mobilization. The
councils appeared in this slow phase, the volcano had already erupted and the lava was
cooling. Perhaps the greatest sin has been that the councils have been created at the
wrong time, if they had appeared before, they would have been more consequent and
effervescent.
Political opening has weakened the opposition. Everything was concentrated in
MDB (Brazilian Democratic Movement). Multiple party systems didn't arise from political
awareness, a political evolution of our society. They appeared as a strategic force to
demolish opposition. When political opening took place, the groups would no longer
fight. We had a very strong group and several small groups. If the winter is harsh, the
flowers are more brilliant in the spring. In the countries were the winters are very
rigorous, springtime is a fantastic explosion of colors. We had the military dictatorship, a
strong, intense and very long winter. When spring bloomed, it was all at once, as an
explosion. Not that we praise political winter, but one thing leads to the other, when you
prune a tree, it sprouts strongly. Perhaps the next generations will come out strong not
needing any pruning, even without the common enemy. Our movement was not only for
the rights of the disabled, we were also citizens against dictatorship. At that time one
couldn't have groupings of people, but there was much resistance against it. We were
very stimulated by the cultural movements.
Our claims were education, health, transportation, work and leisure. These five
items were not subject to questioning. Let's not be so critical and cruel with ourselves,
we conquered many things.
The fact that we were able to consolidate our rights in the Constitution is very
important. Many items are still to be regulated, but these conquests have not been easy.
Our situation is far from ideal, the society is far from what we wished for, but it
doesn't mean that we did little, much to the contrary, we had great conquests. The
youngsters have the commitment to improve the foundations we've built.
During the event that celebrated the 25th anniversary of the AIPD, and before
this, at the exhibitions that sold equipment for persons with disabilities, I could see young
people getting involved and working hard; however they have the disadvantage of not
having the favorable environment we had in our time. We had monthly meetings with
around 100 people attending. In the room, we would make three of four concentric
circles. People came from different cities in the state of São Paulo, and even from other
states. Our voice was strong.
When I started in the movement, there were persons I saw as being a step
above me. This was the case with Cândido and Maria de Lourdes Guarda, who in spite
of living at Hospital Matarazzo and use a stretcher to move around, communicated with
all of Latin America. Also above me were: Gilberto Frachetta, Luiz Baggio, the persons
from NID (Center for the Integration of the Disabled). Bacurau from Morhan
(Reintegration Movement of Persons who have been touched by Hansen's Disease)
from Manaus, who was someone whose leadership had a strong Influence on me. There
were the people from Adeva (Association of the Visually Disabled and Friends) which
was always involved in discussion, but had admirable performance and persistence in
their fights.
Leila called my attention to the issue of visual impairment, a complicated
situation not only for the visually disabled but also for us who are physically disabled. I
learned a great deal with her pacifying behavior, although she was very firm in her
positions. There were also those from the Ourinhos Association for the Help of the
Physically Disabled (AADF), among which stood out the physician Robinson José de
Carvalho, whose opinions were always very much to the point. Also active participants
were Romeu Sassaki, Otto Marques Silva and Thomas Frist. These people made the
difference.
For me, who was starting to have a political education and had just arrived to
the movement, these persons were a very important reference. Their thoughts were a
novelty for me. It was a privilege to see and hear people like for instance, Rui Bianchi do
Nascimento. Rui who had a frightening physical fragility had very powerful arguments.
All these people enlightened me.
Nobody discussed the ramp that had yet to be built. We discussed much
deeper, conceptual issues. The debate was about the procedure (how the ramp should
be built) but at the same we defined the concept (what the ramp represented). I didn't
want just to go one step up, I wanted my right to come and go. These were quite
complex issues, which gave rise to much polemics and discussion. You now could be a
fierce enemy of a person at your side and a minute later we would be drinking together
at the coffee shop.
If we stop to analyze we will not arrive to a clear conclusion if the conflict of
opinions among the different entities impaired or helped tie movement: the opposition of
ideas was bad in some aspects and good in others - but perhaps if we had had less
differences perhaps we would have advanced more, on the other hand, if we hadn't had
conflicts, we would not have raised so many options. It's impossible to know what would
have happened, even because we were naïve mainly regarding political issues.
We came from a very long night. We were afraid to claim many things, and this
fear created phantoms. Up to which point could I confront a governor? I don't know, he
was an authority, and at that time one didn't question authorities. One thing was clear:
we did NOT what the role of "the poor little thing" - this attitude fuelled all our activities
and actions. This allowed us to conquer our dignity. The present generation is unaware
of the concept of "poor little thing". There are two ways of walking: one by foot and the
other seated. I have the advantage to be seated!
There was the national movement that encompassed entities from all over
Brazil and those that served as an umbrella for different disabilities. Some were only for
the physically disabled as was the case of Abradef (Brazilian Association of the
Physically Disabled) where most of the members were paraplegic who worked as street
vendors . Adeva was for the visually disabled. The cradle of Aide was DRPV who served
all types of disabilities. The contact between people with different types of disabilities at
Aide was not conflicting, because at DRPV we already had a heterogeneous group of
persons.
The presence of visual and hearing disabled was extremely important for us,
because sometimes I didn't take into account their needs. I was thinking about the ramp
but I forgot that the flooring had to be done in such a way that they would identify it well.
It has been a very rich experience. It was very important to have them at our side
teaching us how to adapt to their needs. In this aspect, eila had an Important role.
The movement - a forum of different entities and persons with different types of
disability, already started as heterogeneous in terms of national movement, later a
division of different disabilities took place, which was a natural evolution.
In São Paulo this heterogeneous platform created solidarity and friendship that
persists to this day, therefore if we decide to summon a meeting in the state of São
Paulo, we will not be able to exclude the visually and hearing disabled for they are our
personal friends. For us this gap between disabilities is not significant or worrisome. In
the macro movements, you will see the ghettos of specific needs of some of these
groups that identify among them. From all disability modalities, the hearing disabled are
those who may be described as a compact closed group, due to the features of their
disability - fraternal history that unites us stops existing and the hearing disabled will
seclude themselves in their own group, but in my opinion not due to lack of consideration
of the needs of other groups - this would not be cool. In national terms the ideal would
be to discuss these issues as universal issues.
Presently, any leadership has a hard time to gather half a dozen persons to
discuss political issues; but new militants have the advantage of being able to use the
web to communicate with persons all over the world, nobody can complain about lack of
information - a click of the mouse is all you need to get any type of information.
Our generation made good use of a historical moment that would push us
toward getting united, information was a rare jewel that had to be sought with much effort
and difficulty. I remember that we spent two whole days in the moldy archives of the São
Paulo city hall to unearth the legislation about sidewalks and we didn't achieve any
results!
Today I don't have as much physical resistance as I had in those days. I would
finish my work at the bank and attend the meetings, from there go straight to
celebrations, I would get home around 03:00 a.m. and would get up at 06:00 a.m. to go
to work. Today this would be completely unfeasible, a lack of respect towards my own
self, I have to respect my limitations. Presently we have a greater need to meet in order
to discuss issues beyond the universe of disability; we will discuss culture, music,
prepare a barbecue, a pizza and a beer. The tragedy of yesterday is the joke of today,
and we have many reasons to laugh!
We didn't have much idea of the importance of the movement, but I am sure
that everyone had the opportunity to feel very proud of having taken part in the
movement. I can only be grateful for having taken part of this group of people who
enriched me so, brought me awareness and a clear mind and enlarged my concept of
life ad society. I don't live any more the ideal we used to dream of, but I don’t throw
paper on the ground nor do I kill birds.
When the movement comes to make a survey of the pros and cons of my life, I
will feel relieved, for I feel deeply privileged even as having received the gift of having
assimilated the human content and the knowledge that those who participated from the
movement were able to offer me.
My sole worry is to think that all this effort may be lost. Often times you want
things to go on so you will not be excluded from history. I hope that the new generation
will continue with our work, not to value us, but to have the process evolve, so that the
new technologies that were not at our reach - as the web - may be used to reap the fruit
that we've not been able to conquer yet.
Image: Newspaper Diário Popular, Sunday August 10, 1980, Brazil
Headline: Disabled strive for integration. The physically disabled continue their fight for the full integration in the society. In order to
write the guidelines to be discussed in October in Brasilia at the 1 st National Meeting of the Disabled, are gathered since yesterday at
the Sports Arena at Rua Germaine Burchard (page 3).
Physically disabled persons fight for integration into the society. The newspaper clipping contains black and white picture of a
meeting of people with and without disabilities.
After a busy meeting last month in São Paulo, the physically disabled will gather again once again, this time in Brasília, to carry out
the First National Meeting of the Disabled, from 23rd to 25th of October with the wide goal of integrating the disabled in the society
and full valorization as human beings.
Since yesterday, several representatives form 25 entities from 10 Brazilian states part of the coalition Pro National Federation of the
Entities of Persons with Disabilities are gathered at the sports arena of the Sports and Tourism Secretariat at Rua Germaine Bouchard
debating the means to forward claims in the Brasília meeting. Other issue in the agenda is the International Year of the Persons with
Disabilities in 1981. During this period the disabled and their entities will redouble their efforts in the quest for their rights, presenting
to the community the discussions regarding their interests, needs and experiences.
According to representatives from other states, the July meeting had a good repercussion in the community. Yesterday morning the
delegates from the entities of the disabled discussed the by-laws of the organizations, and the debate will resume today at the same
place.
Digital collection: Memorial da Inclusão.
Collection: Romeu Sassaki.
Image: Document of the Movement for the Rights of the Disabled
Press Release: The Movement for the Rights of the Disabled invites the interested parties, especially the disabled, to appear to the
Opening Ceremony of its program for the International Year of Persons with Disabilities to take place next Saturday, March 14 at
03:00 p.m. at the Plenary Hall of Anchieta Palace, São Paulo City Council, Viaduto Jacareí, 100
The agenda after the Opening Ceremony will consist of 8 Round Tables as follow: (Attached Detailed Program)
April 25, from 01:00 to 05:30 p.m. – Urban Space;
May 23, from 01:00 to 06:00 p.m. – Labor Market;
June 27, from 01:00 to 06:00 pm, Individual and Collective Transportation;
July 18, from 01:00 to 06:00 p.m. – Medical Care and Rehabilitation;
August 29, from 01:00 to 06:00 p.m. – Specific Legislation;
September 19, from 01:00 to 06:00 p.m. – Leisure;
October 17, from 01:00 to 06:00 p.m. – Education and Professionalizing Schooling
November 21, from 01:00 to 06:00 p.m. – Human and Social Relations
All round tables will take place at Colégio Anchietanum at Rua Apinagés 2033, close to Rua Heitor Penteado 1200, Sumaré.
The importance of this events and other that will follow may be so translated:
1.
2.
3.
4.
5.
Persons with disabilities, by means of the Movement, are preparing themselves their agenda for the International Year of
Persons with Disabilities, created by the UN (United Nations) that at its last General Meeting of 1980, “always insisted in
the participation of the disabled”;
This importance is disregarded when until today there is no official agenda in the country to celebrate the International
Year of persons with Disabilities, in what concerns the fact that it is the responsibility of Governments from UN member
countries the creation of national committees to prepare the agenda.
We are trying to disclose correctly and repair the mistakes made in official statements made by Brazilian authorities who
have been mentioning the “International Year OF Persons with Disabilities” as “International Year of the Physically
Disabled”, “International Year of the Invalids”, International Year for the disabled” or other names. Be observed that the
right name is OF Persons with Disabilities, where OF means belonging to and for PERSONS WITH DISABILITIES, because it
encompasses not only one type of disability, but the whole set of disabilities (mental, sensorial, physical, etc.) as defined
by the UNIVERSAL DECLARATION OF THE RIGHTS OF THE DISABLED (Resolution adopted by the General Meeting of the
United Nations of December 09, 1975 by the Social, Humanitarian and Cultural Committee.
With this opening and agenda we are aiming to achieve “Full Participation and Equality” – theme established for the
International Year, making the society and the state aware of the rights of the disabled.
We also are trying to take persons with disabilities out of their homes and marginalization, so that united and aware, they
will be able to conquer their space in the society, building a fairer , fraternal society with equal rights for all citizens,
Movement for the Rights of the Disabled.
Digital Collection: Memorial da Inclusão.
Collection: Romeu Sassaki.
Image: Newspaper Jornal da Tarde, March 13, 1981
Title: The campaign for the rights of the disabled. Tomorrow will be opened the agenda of the Movement for the Rights of the
Disabled. “Persons with disabilities do not claim benefits that have features of being gifts, privileges or concession, but claim what is
their right as citizens of a country and full human beings”.
This is a paragraph of the Program Letter of the Movement for the Rights of the Disabled. It shows well all the philosophy of
campaigns that will be carried out during this International Year of Persons with Disabilities, with a single goal: give universal
awareness that disabled exist in large numbers and deserve to occupy a space in the society.
In Brazil alone there are over 12 million disabled persons who want to participate with “full equal conditions, where there is no
discrimination but normal treatment and no paternalistic behavior; these are people who wish to enjoy the same things normal people
enjoy, with the only difference that they need special attention” as mentioned in the Program Letter. This is what the movement for the
Rights of the Disabled intends as stated one of its coordinators, the attorney Leila Bernaba Jorge.
Leila who is the chairman of the Association for the Integration of the Disabled and Visually Disabled says “the situation of the
disabled presently is quite bad, for we have been forgotten”; the disabled look for jobs but always have denied access to public or
private jobs, therefore sometimes they even do not find means to leave their hospital bed.
Leila considered herself to be privileged, for besides coordinating MDPD’s Legal Committee, she has her private practice, “but once I
was not admitted to a public contest and nobody wanted to hire me”, for such cases , she says that the Association for the Integration
of the Disabled, that works to find jobs for the disabled”.
The Association has been created in October 1978. We spent more than one year structuring our work; now after some contacts with
entrepreneurs we already achieved many good things. At the Old Cars Exhibition, one hundred disabled will work in the coordination
and security. Banco Comind came to us for employees; Banco Real already has more than 50 persons with disability working.
The opening of the program of the Movement for the Rights of Persons with Disabilities for this International Year of Persons with
Disabilities will take place tomorrow at 03:00 p.m. at the plenary of the City Council of São Paulo at Viaduto Jacareí, 100. From then
on, round tables will be carried out monthly at Colégio Anchieta, at Rua Apinagés 2033 (Sumaré) always starding at 01:00 p.m. on
April 25, May 23, June 27, July 18, August 29, September 19, October 17, November 21.
Some of the goals of the round tables according to the Program Letter are: “Repair the mistakes in official pronouncements made by
Brazilian authorities that are making reference to the International Year of Persons with Disabilities as: “International Year of the
Physically Disabled”, “International Year of the Invalids”, “International Year of the Disabled Person” and with this program achieve
“Full Participation and Equality” – the theme established for the International Year by means of creation awareness in the society and
government for the rights of persons with disabilities and take persons with disabilities out of their homes and marginalization so that
united and aware they will conquest their space in the society, thus building a fairer, fraternal society with equal rights for all its
citizens”
Legenda: Jornal da Tarde, 13 de março de 1981. Acervo digital Memorial da Inclusão. Acervo Romeu Sassaki.
Image: Four pages (pages 17-21) of EUP (Student’s Union of Pernambuco) Magazine paying honors to Cândido Pinto de Melo. The
pages of the magazine are navy blue, with headlines in the colors green and orange and the text in white.
Page 17: Headline of the page has the name Cândido Pinto. The right half of the page has a profile picture of Cândido, smiling, with a
moustache, no beard, gray hair. He is wearing white shirt, black suit and brown tie. Below the image, on a white strip, the title of the
article: A persecuted leader, never defeated – Symbol of the resistance to military repression, president of UEP (Student’s Union of
Pernambuco) in 1969 never stopped working for democracy” by Thais Queiroz
Blue page bottom containing the website: www.estudantepe.com
Page 18: Contains six pictures distributed among the pages: 1) Cândido on his wheelchair in profile, in the midst of a meeting with
different members of the Pernambuco Student’s Union. He has a dark hair and beard; 2) Cândido talking with two students at his side.
He has dark hair and beard; 3) Cândido quite young, no beard, dark hair and moustache, sitting of his wheelchair surrounded by four
people wearing canes, all smiling; 4) Cândido quite young, dark moustache and sideburns – he is standing and tries to walk with
axillary crutches helped by a nurse; 5) Cândido older, fatter, graying hair, but moustache and beard still dark, full body picture where
he is sitting on his wheelchair with a brick wall as background; 6) Close up picture of Cândido older, dark beard and hair with a few
gray streaks, he is smiling.
Content of the article: The Student’s Union of Pernambuco (UEP) always was tuned to the popular movements of Brazil in the fight
for democracy. This was true during the Getúlio Vargas “New State” (1937-1945) and years later during the “Lead Years” of the
military dictatorship (1964-1985). During this second phase, mainly between the end of the 1960’s and the beginning of the 1970’s,
the cross fire between the two political parties was intense. Marshall Costa e Silva decrees on December 12, 1968, the Institutional Act
No. 5 (AI-5) that allowed for the withdrawal of powers from politians and students. There is a direct confrontation between the
Government and opponents. Many opponents paid a high price for defending the democratic ideal. The engineering student Cândido
de Pinto Melo, president of UEP was one of them. In 1969, he suffered an attack that left him paralytic until his death in 2002.
Cândido Pinto was also affiliated to the Brazilian Revolutionary Communist Party (PCBR) and was a member of the Students Central
Committee (DCE) of the Electronic Engineering School of the Federal University of Pernambuco (UFPE) where he organized
meetings, gathered students and members of the society in manifestations that opposed the government. This was not an easy task for
he chaired an entity that was considered illegal by the military system. “With the government toughening in 1968, UEP went
underground. We all decided to continue, but things were becoming more difficult” explains journalist Marcelo Mário de Melo, a
colleague of Cândido, persecuted by the dictatorship and arrested for “eight years, forty three days and twelve hours” as he says with
his untiring fight for rights of the students.
Page 19.
Cândido would not rest: he was Always involved in movements with the purpose of guaranteeing denied rights. “He fought for
student’s rights, was arrested when he was 17 for showing a poster against UFPE’s rector, used to say his widow, the nurse Joana
Cecília Figueiredo de Melo, who is preparing a book about the political life of her late husband. On October 11, 1968, Cândido Pinto
represented Pernambuco at the 30th Congress of the National Students’ Union (UNE) in Ibiúna, in countryside of the state of São
Paulo. That would be the largest meeting of the national students resistance and was frustrated by the military, even before it started,
resulting in the incarceration of 920 youngsters. Cândido was among them. That act marked the end of the Brazilian students’
movement.
The intense repression against forces contrary to the military regimen in Pernambuco would end in an attack against the leader of the
students, that didn’t kill him, but left him without the possibility of walking until the end of his days. The criminal attempt that had the
purpose of silencing the voice of the students was perpetraded on the night of April 29, 1969.
Around 10 pm Cândido was waiting for a bus close to Torre viaduct, when a green Rural SUV approached him suddenly. Inside were
3 hooded men, one tried to drag him into the car, the student reacted and was shot twice, the second shot hit his vertebral column. At
an interview given to Jornal do Comércio on October 18, 1999, the former leader of UEP mentioned the details of the crime he
suffered:
Página 20.
“At that moment I felt like a puppet, falling into the ground and not feeling my legs”. When I arrived to the hospital, helped by
passersbys, Cândido remembered that he had wanted to make a speech, but only blood would flow out of his mouth. “Speaking was a
way of keeping myself alive, I had to react; and if I was to die, I wanted people to know what had happened” he declared at the time.
As soon they became aware of a small note published in the newspapers, the students reacted. They strongly protested in front of the
hospital where Cândido was staying. “All students wanted to donate blood for Cândido, until the moment the hospital didn’t have any
more available bottles for blood collection” says Joana Melo.
Still at the hospital, unable to move, armed guards surveyed the student day and night preventing him from seeing even his own
family. This fact generated the protest of politicians and important members of the society. At the time, “Dom Helder Câmara became
solidary as well as councilmen from MDB, the opposition party and made speeches against the attack and the Council House of
Recife” remembers Cândido’s friend. Disencouraged by the Recife physicians who stated that he would not be able to even seat, the
student’s family decided to move to São Paulo. He sought treatment at the AACD – Association for the Assistance of the Disabled
Child. It did not take long to have the military from the state of São Paulo to become aware of his hospital stay and kept him under
custody inside the medical center. Even facing all these difficulties, Cândido did not let go the political action. He finished the
university,
Page 21.
got a Master’s Degree in Engineering applied to Medicine, where he met his wife Joana Melo, with whom he had two children: Ana
Luiza e Bruno. He entered the movement of the disabled creating the national entity and got affiliated to the Workers Party (PT) in
São Paulo when the party was created. Joana remembers that before the amnesty the family tried to hide the real reason of the
engineer’s paralysis. He could not say that he had been shot by the military, for they did not know his background, he told them his
condition was due to a car accident otherwise he would be persecuted. When amnesty finally came, he started telling the truth.
During the 33 years from the shooting to his death on August 31st 2002 at 55, this untiring militant never stopped fighting for
compensation against the damages he suffered. Whenever he went to Pernambuco he tried a lawsuit revision. Even living outside the
state of Pernambuco for more than three decades, Cândido Pinto never stopped being, de facto et de juris, the president of the
Pernambuco’s Students Union. “After the incident he continued to send messages and communications” according to journalist
Marcelo Mário de Melo. The deserved acknowledgment is present today in the name of the entity: Pernambuco’s Students Union –
Cândido Pinto – name of a leader that has been persecuted but never defeated by the military dictatorship”
Legend: UEP Magazine: 65 years (no date)
Digital Collection: Memorial da Inclusão.
Donation: Joana Melo
Geraldo Marcos Labarrère Nascimento
Image: Color picture of Father Geraldo with the wording: "after starting the movement and several actions being carried out, we had a
very important year: The International Year of Persons with Disabilities (1981). I remember that during that year Brazil held a national
congress for persons with disabilities in Recife, with a large attendance"
y name is Geraldo Marcos Labarrère Nascimento. I was born on December 11,
1940 in Belo Horizonte, Minas Gerais. I did my high school studies in Belo
Horizonte and graduated as accounting technician. I entered the Jesuit Order in
February 1966 at 25, in the novitiate of Vila Kostka, Itaici, Indaiatuba/SP.
M
Before joining the Jesuits, with a group of friends from our neighborhood we
created a club called Araguaia in order to promote parties and dancing events. In 2009
we've been able to gather 52 members of that group at a memorable lunch offered by
friend Antônio José de Almeida Carneiro, with the gift of an album with pictures of the
gathering. I've served the army at the 12th Infantry Regiment/BH in 1959 (in 2009 we
also celebrated the 50th anniversary of that group, and from the 100 members of the 1st
Company, we were able to gather 60 mature gentlemen). After the military I got a job at
a car dealer were I started as an office-boy and left as head of the office and a partner,
all of this within a five year period. I worked during the day and studied in the evening.
At the night school once appeared a guy much younger than I, Cláudio Borges
Guimarães, student from Loyola High School, speaking about God and of a group of
youngsters, the GGN (Young People Group) who worked in a slum. I was very
impressed with his speech and his witness about religion and the slum. I've asked him if
I could join the group, his answer was affirmative and next Saturday I attended a
meeting - and there I've stayed.
A long time before that, when I was 12 or 13, I had a very strong negative
experience with the Catholic Church. At a confession, when I declared my lack of
chastity, the priest started to ask all details and circumstances of the "fault" and this
scared me cold. As a result, I spent more than 10 years without entering a church and a
negative attitude regarding everything related to the Church.
Claudino's speech touched me. I sought his company and asked "Are you a
seminarist?" He said "No", next I asked "Then how comes you speak about God, Church
and Slum with such a tranquility?"( I wrongly assumed that religion issues were only for
those slightly effeminate, and the was very straight). He mentioned the GGN group and
the work of the group at the Bico de Papagaio slum in Belo Horizonte… I became
curious and wanted to know if anyone could participate, and he gave me an affirmative
answer.
I met the group next Saturday and got excited with what I saw. The group
divided itself in several teams: one for the visits (they would go from house to house
recording the biggest difficulties and if necessary would inform other teams: a health
team tried to get medical visits, medicine and hospitalization); a food supplies team, was
responsible for feeding issues) and a building team, that worked in refurbishing and
fixing the shacks and tried to arrange building materials. I joined them.
We would spend Sundays working in the slum, each one with a different role.
Saturdays there were group meetings at the Loyola School where our tutor, Father
Pedro Américo Maia, a Jesuit, lived. There we would solve all Issues, planned our
performance and received our training. Taking part of this group and meeting this priest
gave me a huge and priceless satisfaction.
In the beginning I thought I would help slum dwellers, because I thought that I
who had the "means"(material, economical, financial, cultural, schooling, etc.) to help the
"poor souls" (who lived I cardboard, timber and tarpaulin houses, did not have schooling,
health and sometimes not even food). But as time elapsed, I perceived that they were
helping me. During the four or five years I've worked there, a huge internal change took
place, silently they have transformed my heart, from someone too much focused on
external issues such as appearance to someone worried with common wellbeing.
This experience marked my future. Little by little I started investing in the values
of "being" and decresing the importante of the values of "having". The observation of the
lives of the people I met at the slum, especially the family of Mr. Geraldo (chairman of
the Vicentines), Mrs. Iracema and her children, brought to the surface my best qualities:
authenticity, rectitude, generosity and dedication skills…, or according to the oriental
spirituality, the God who lived in them, has awakened the God that existed In me (later,
in the contacts with persons with disabilities, the same feeling would occur - the poor are
bearers of salvation).
I didn't understand how they had so much wisdom, even having little or no
schooling. How generous they were and how they shared the little they had, That
caused such an impression that I thought that I would also be able to donate life and
decided to become a priest, therefore at 24, on November 1964 I left my job and
according to the guidance of father Marcelo de Carvalho Azevedo, provincial of the
Jesuits, stayed one year praying, reflecting and confirming my vocation towards
priesthood. I sold the two plots of land I had acquired and donated the money (part of It
went to the GGN group that formed me) and entered the Jesuit novitiate (02/02/1966) in
Itaici, in the hinterlands of the State of São Paulo.
My experience with disabled persons started in my family. I had an aunt,
Zizinha, who lived with us in Belo Horizonte. She had a disease that left her with her
right side paralyzed and she moved around with difficulty dragging her leg. She was a
very religious person, when I was 6 or 7 years old I would accompany her every morning
to the 06:00 am mass at the Loyola School chapel that was located 5 blocks away from
out house. I gave her my arm and we left early in order not to be late.
Before becoming a priest, during the Philosophy course at Our Lady Medianeira
School, part of Anchieta Schools (Fasp), I met a Jesuit priest, Duato Quitapenas, who
brought the movement of the Christian Fraternity of Persons with Disability (FCD) to
Latin America. He was a Spaniard who worked in Peru, I believe he was called
"quitapenas" because even being very sick and full of sequellae of surgeries, he would
not be paralyzed due to his pains and difficulties, but could be happy and lively,
"quitando las penas" (taking away the pains) from himself and all those who came close
to him.
The FCD movement started in France in 1942 with Monseigneur Henri François
and spread worldwide. In 1968, this Father Quitapenas who started the work In Lima,
Peru, as mentioned above, gave a lecture and the Philosophy school were I studied. I
attended the very interesting meeting and he was a captivating person. At the time I was
working with Father Quevedo and did not get much involved, but a colleague, Vicente
Masip, a Spaniard from the Northeast province became very interested.
We finished our philosophy course and were transferred to São Leopoldo/RS to
follow our theology studies. In 1971, during the first year, Vicente who had followed
Quitapenas to Peru and learned with him, started to hold meetings with disabled persons
at the university, during these meetings I helped those persons in wheelchairs to go up
and down buses or vans, at arrivals and departures. I did just that during the five years I
spent there for my main pastoral job was seeing people with serious problems, either
spiritual or psychological, related to parapsychological phenomena.
After being ordained priest (January 15, 1975) I came to São Paulo (1976) as
vice director of the Latin American Parapsychology Center (CLAP) working with the
director, Father Quevedo. At CLAP a Peruvian secretary by the name of Janete Vega
Lomparte has been admitted, and she already was acquainted with the FCD in her
country and with father Quitapenas. A huge coincidence, the paths of God!. She arrives
in São Paulo as an immigrant and is hired by CLAP as my secretary. Later she meets a
woman called Maria de Lourdes Guarda who lived in a bed. Every day and the end of
the day, Janete would come and tell me: "look there is a lady I met who lives at
Matarazzo Hospital and would like you to pay her a visit". I never found time to go, and
months went by with the repeated invitation ringing in my ears. But one day I decided to
accept the invitation, not much willing but to get rid of the insistence.
I met Lourdes in May 1977 and we didn't became apart. I started to visit her
constantly, more than once a week, me who lived on km 26 of Via Anhanguera. On the
other hand, she lived in the same hospital, same room, same bed since 1947, therefore
30 years!
Until the day after so many meetings, we started to think in a way to place
wheels on her stretcher so that we would be able at least talk somewhere else that was
not her room, as for instance the garden of the hospital and breath some fresh air. She
was somewhat doubtful but accepted the idea. And it worked. She was happy, she liked
to talk under the tree shade, although sometimes the birds would send her a message.
Thank God no bird targeted her face.
Since then we started to work together; we promoted a meeting of disabled
person at the parish of Colégio São Luis (São Luis School). We had met the Corregidor
Judge of prisons, Dr. Laercio Tali and his wife, Maria Inês who were part of the
movement for the couples of the parish. We requested him to authorize the disabled at
the Carandirú prison to meet us, and he accepted the idea and he also went with his
wife.
The meeting was a success, the basement of the parish was full; in total there
were 70 people among disabled and collaborators. Ten prisoners in wheelchairs arrived
followed by security agents. At the meeting, more coincidences took place. One of the
prisoners, shot in his backbone at a confrontation with the military asked us: "who is that
gentleman in the wheelchair?" and I answered it was Dr. Adalberto (Deodato) a retired
lawyer who had suffered a car accident". And the prisoner said: "I would like to talk to
him, because before being tied to a wheelchair I robbed his house". The two were
introduced, talked a lot and started to exchange letters. The robber became friends with
his victim. He said that at the time, none of them were in wheelchairs, the turns of life!
Talking about Lourdes, she was really a special person; she had been an
elementary school teacher in the city of Salto, close to Itú in the countryside of the state
of São Paulo. All of a sudden, she started to feel severe back pains. The doctor thought
it might be a simple case and a surgery would solve the case easily. The surgery was
unsuccessful and they perfomed another one to fix the first one, after that a third, fourth,
fifth and sixth.
After one of these surgeries she had to amputate a foot due to a gangrene, then a
higher amputation, until she lost her right leg, only a small stump had remained, which helped
her very much for she used it as a support during bath. Later she also ended up taking off a
hip bone which left her left leg dangling for it was without the bone support; and without
movement, the muscles underwent atrophy. The leg became so thin and delicate that not
even the sheet could be put on it for it would impair circulation. Thus the leg was lifted with
the help of pillows to stay inclined, higher that the body to facilitate blood flow and a wood
frame was built to be put over the legs to support the sheet.
Due to the hip and vertebral column problems, she had to receive several metal
pins and had to stay within a cast that looked like a groove and that extended from neck
to knee for the rest of her life; also she had a permanent bladder probe that caused
constant urinary infections and pain. So she lived inside a thick plaster groove and
curiously didn't have any bedsores - impressive!
She could not sit and spent all her life lying down, and this was not a reason to
prevent her not from traveling all over Brazil and part of Latin America fighting for the
Kingdom of God.
When we speak of a person who spent 50 of the 69 years of her life in her
condition, one may think of a pessimistic, sour, suffering, "poor soul" type of person.
However, one of the first things that caught the attention of those who met her was her
open, smiling face and hopeful and positive attitude.
Lourdes was a strong, nice, healthy and happy woman who was a fan São
Paulo soccer team. Even with all difficulties, she lived as independently as possible,
because she knew she would die if she would limit her life to the fact that she was
unable to even reach a glass of water that would be more than 50 centimeters away, as
she moved with difficulty just the arms and head.
It was within this difficult scenario that she decided to dedicate herself
completely to others. Thus, she spent days thinking of how to help solve all the requests
she received. These came from people who needed a wheelchair, a cane, crutches,
medication, a medical visit, hospitalization, clothing, jobs …. these were husbands and
wives with family problems: separaitons, traisons, drugs, children… these were people
who were temporarily in São Paulo and had nowhere to stay… and would stay at her
hospital room for a few days or for long periods of months and months. They all were
received without distinction of race, religion, physical condition, profession, political
party, rich or poor, single, married and their children. Some brought problems, other
during their stay helped her to answer letters and to sent to the Fraternity groups all over
the world the packs of Open Letters (two thousand copies), the National FCD magazine.
whose headquarters were located in that same hospital room.
She heard everything, thousand things, happy or sad. The son who flunked
entrance examinations to the university, the father who lost his dear daughter, the
mother who asked her to bless her newborn child, the lawyer whose company was close
to bankruptcy and he was having suicidal ideas and needed prayers and peace for his
soul, a woman (a dear person whose name I will not mentioned and you will understand
the reason, for she helped so many people withou any benefit for herself) who wanted to
help the disabled and was willing to pay for anything they needed.
She paid one thing and other, yet another thing and tenths of needs were met
during a not so short period of time, for really needy people. Nothing that was
superfluous, luxurious has been donated; however one day the Federal Police came to
Lourdes' door - for her room was the place where people looked for help - asking If that
was the place were fake banknotes were being manufactured. She was almost
imprisioned for they thought she was falsifying money or was colluding with crime. The
police saw her physical conditions, but they looked even under the cast to see if
something was hidden. It took a while for them to understand that she was not able to
control from her bed the entrance of exit of people to or from her room (at the hospital
there was no entrance control for those who went to the rooms) to either aske
something or to offer something, however they did not let her alone before sealing a
great friendship that lasted many years.
Lourdes would see, hear and refer persons, she was a heroin from Heaven, a
God's gift to humankind.
We placed wheels under her bed and we promoted that meeting at the São Luís
Chapel at Avenida Paulista and thus the movement began. I remember that the same
parish held a bingo, they were drafting a car. Lourdes won several bingo cards and gave
me one to write down the numbers. When they started to sing the numbers, almost all
numbers where in the card I was holding, I started to cross the numbers, until I perceived
I had won the car! It was a nice car, I don't remember the make. But I didn't win alone,
we finished together, a lady and me and we shared the car, each one got 50%.
With the money we were able to buy a used Kombi van from the Youth and
Vocational Pastoral Institute Anchietanum, in the neighborhood of Sumarezinho where I
lived. The vehicle was in good conditions, has had a single owner, no crashed, it was
good for us, they gave as good price and a tank full of fuel. We removed the two rear
seats to make place for Lourdes' stretcher whenever we had to leave.
We started visiting the retirement home of Jaçanã in the north section of São
Paulo, managed by the sisters of Saint Joseph of Chamberry, the same of Santa Casa
de Misericórida. At the time the home director was sister Célia, who gave us much
support to work with the interns among which we made many friends: Neuza, Alice… so
many persons abandoned by their families! The days we visited were a blessing for them
and for us as well.
Neuza (Aparecida dos Santos) was living there for 9 years, young, strong, full of
vitality, in a wheelchair and no perspective of leaving the place. We know how these
human warehouses paid by public moneys are: money is always scarce, sometimes
embezzled, in spite of the huge efforts the sisters made to manage the little they
received. Girls, boys and elderly had to get up at 08:00 a.m. when the employees arrived
and would slowly put the interns in the wheelchairs. From 03:00 p.m. on, they would be
put in bed again for the employees left at 04:00 p.m. After this time, no one would be
able to help them to their beds, or if after put in bed they fell, they would spend the whole
night on the floor, regardless if hurt or not.
Night guards were few and directed to protect the building, reception, etc. The
institution that occupied more than five blocks and had 150 dwellers, all needing some
type of personal help, most spent the time since put in bed until the moment when were
taken off the bed without drinking water or urinating - from 04:00 p.m. to 08:00 a.m. = 16
hours. There was no one to help. If we make some calculation, Neuza, young and full of
life, from the 9 years she spent there, 6 were on a bed, which accounts to 2/3 of her stay
were spent in bed, not due to meanness, but to the schedule of the employees; in spite
of the good treatment, that was a very hard life.
Later, after 3 or 4 years participating from the Fraternity she found a way to
study, finish college, do a technical course, was accepted by a bank where she worked
as telephone operator, was able to share an apartment to share expenses, and later
preferred to live alone, independent until the end of her days.
With the strong support of Paulo Evaristo Arns, Cardinal Archbishop of São
Paulo, an angel from heaven for us, the movement grew rapidly. We established several
FCD centers in São Paulo: Jaçanã (Neuza), Belenzinho (José Carlos), Carrão (Irene),
Freguesia do Ó, Itapecerica da Serra (Carlito), Downtown (Maria Cristina, Nilza). So many
people were able to leave forced isolation, leave the catacombs of social structure by
God's goodness.
With the car won at the bingo we gained wings and went to the hinterlands of
the state: Jundiaí, Campinas, Americana, Santa Bárbara do Oeste, Piracicaba,
Ourinhos, Marília, Lins, Andradina, Presidente Prudente, Ubatuba… FCD was spreading
as fire on straw. In the beginning the passengers of the Kombi van were almost always:
Lourdes Guarda, Isaura Helena Pozzati, Neide Silva, Nicolau and me. Later many
people joined us and help and the group for the trips changed. We rotated… Aurélio, Dr.
Paulo (it is necessary to record the names of everyone) because these were the paths of
God on Earth.
In 1980 was summoned a General Meeting of the Fraternity in São Bernardo do
Campo. We've been elected to coordinate the entity in the country. Lourdes became
national coordinator, Célia Camargo Leão (wheelchair ridden) as vice-coordinator and I
as councilor.
We started to travel around Brazil. Lourdes would occupy nine seats in a plane
due to the stretcher. We would put down the back of the chairs and the stretcher, without
its legs, would be located over the next six seats close to the window. The other three
were raised to their normal positions and would be occupied by Célia, Maurício Silva and
me.
The trips were possible because Lourdes, with her more than 34 years confined
to the hospital created a large network of relationships. People from the most different
backgrounds would visit her. Some because were fascinated by her spiritual strength
and left comforted by God. For many he's been a real source of pure water. The
president of the Transbrasil airline was one of then, fascinated by her and her work, thus
every one, two or three months, during the four years of the national term of office, he
would give us tickets to fly all over Brazil to carry out the Fraternity work: meetings,
congresses, gatherings. etc. We would travel everywhere: Minas Gerais, Rio de Janeiro,
Santa Catarina, Rio Grande do Sul, Mato Grosso, Pará, Ceará, Paraíba, Pernambuco
and Bahia.
During the term of office of the National Team from 1981-1984, we helped to
start more than 250 groups with disabled persons around the country, inclusively
reaching prisons and leper colonies, supporting the beginning of their movement,
Morhan, in the state of Paraíba, with Marçal.
In Mato Grosso, we scheduled a meeting in Alta Floresta, in the hinterlands of
the state, therefore Plinio and his friends in Cuiabá got us a small airplane, but how to
get into the plane, the four of us: Lourdes, Célia, Maurício and I? We disassembled the
stretcher and Lourdes was lying practically with her head on the pilot lap and the three of
us, plus wheelchair, stretcher legs, suitcase packed in the back of the plane. But the
problems did not end there. When we arrived to the city, the priest whom we had
previously contacted said: "Sorry we are not having the meeting, because this is a small
town and there are not disabled persons here" and I told him "By God sir, why didn't you
tell us beforehand? We made such a difficult trip starting in São Paulo and now we are
going home empty handed? "No way!" Maurício and I decided to walk the streets inviting
the disabled we could meet, forty three of those "invisible" (not even the priest was
aware of them) persons took part in the event. There were eighteen miners among them.
The priest was in an awkward position but God blessed us. That happened in 1983/84
and the only things those souls received in the city were compassion and pity. No one
saw them as people with rights, needing care and attention, at least from the parish.
We left the place radiant, and the disabled hopeful, promising to give loads of
headaches for everyone in order to have their needs met. Only the sensation that they
had, of not being the only ones, Isolated, but being part of a large group of people, of
establishing relationships, communication, this has been worth making such a long trip.
We went other times to Mato Grosso with the same team (Lourdes, Célia,
Maurício and I) one of these trips with the van, hours and hours on the road, 1,565km.
The car was old, even so it took us through the hinterlands with great effort. I remember
one occasion, at 03:00 a.m. we were on a road and the fuel gauge wouldn't even move,
so low it was, no gas station in view, the low fuel sign on and I thought "My Lord, are we
going to run out of fuel, in this forest with no living soul around us!" Lourdes was lying on
her bed, Célia on a mattress, Maurício sitting at my side napping. What are we going to
do if we stop? What if the ladies need water or toilet? The last gas station we passed
was in such a bad shape that we decided not to buy anything nor refuel imaging that
there would be a gas station not far away - but more than four hours on the road, and
nothing. I thought I wouldn't tell them we were running out of gas, for they will panic, and
prayed.
I was getting desperate, very afraid. All of a sudden, after a long stretch uphill,
when I started to descend I see a few lights in the distance, I thought, I hope there is a
gas station! and there it was! The fuel in the tank was sufficient to get to the station and
only started to falter in front of the station, the car stopped some ten or twenty meters
from the pump. Everyone woke up with the lights and road bumps asking what had
happened and I told them we were out of fuel. They answered how was it possible if you
are standing right in front of the station!, and then I told them the whole drama.
There was great protection of Love over us and we could repeat with John the
apostle that we were the disciples God loved, and this continues to be true until today.
There were no limits to Lourdes, and this was very impressive, while we all
complained about something, she would have burns on her back due to the cast and
heat of Mato Grosso. She had blisters on her back and the cast burned her, as if it were
a sun tan, even so she wouldn't let out a single complaint.
There was a certain excitement when we arrived somewhere. Everyone wanted
to have the privilege of helping Lourdes in or out of the van. She was a heavy person,
and with all the cast, wheels, wooden frame, pillows, even more so. The men from the
region, firemen, soldiers, youngsters, even the elderly wanted to help, carrying her was a
kind of trophy or blessing.
Other interesting point is that many people when visited her in the hospital,
would caress her arm, even if disguisedly, pretending they were looking to the other
side and when left the room would make the sign of the cross as if she were a saint or
a holy water font. Somehow people sensed her as an extraordinary woman.
Lourdes used to say that no hurdle prevents life, but it may prevents us from
doing good if we use the hurdle to hide behind it as an apology. The option to help
someone or not, comes before the difficulties, i.e., if someone doesn't helps his neighbor
it's not because life its difficult, it's because the person already had the disposition to not
help, the difficulties then became an excuse. She overcame all obstacles that appeared
before her and helped many people through all means and ways. She passed away on
May 05, 1996 and presently is in canonization process. The Diocese phase ended in
July/August of last year and was sent to Rome to the Vatican Curia. for the second step
to be recognized as God's servant.
We shall see if the Church will be able to canonize her, put her on the altars, but
not to make her a different person from what she's been, only to have her known as
someone who was from this earth, human as we, although with huge limitations, even so
she has dedicated her life to others. She didn't hide behind any of her huge difficulties,
but helped to make this a better world.
However, even in the same group as Fraternity there is opposition from some
disabled. They are the same who believe it is foolish to go ahead with a process In
Rome to have Lourdes canonized they believe that it’s a useless expense, unimportant.
But thank God there are many people who disagree, they believe that insisting
in Rome with her name and life may bring the world's attention to the defense of life, a
God's gift. Lourdes, who had so many limitations, filled so many people with life. She is
symbol of perseverance, faith, hope, courage and huge love for her fellows. She will be
a very strong example for many people showing that having a physical limitation does
not deprive the person of "being" someone. It may reinforce the belief that everyone has
responsibility for helping to save the world.
I believe that if the Church canonizes her, it will be a great and beautiful
example. It would be the acknowledgment of a wonderful surrender for world's salvation;
moreover because this was exactly what Christ came to do: save the world helping
people perceive that we are brothers and sisters, sons and daughters of the same
Father.
At the Fraternity meetings we said that no one would go to Heaven, paradise or
reach happiness hidden behind a cane, crutches, wheelchair or even a stretcher. It is
useless to think that when you go to Heaven, just for being in a stretcher you'll be the
first in line. There's no such a thing. A person who dies and comes before God is the
person and not the devices the person has used during lifetime, as with rich and poor,
what counts are your deeds to build a better world. The lives consumed at the service of
others. Who will be happy are the builders of the Kingdom of God.
Lourdes was someone who understood this process very clearly and deeply. God
loves people and acts though them. I believe our dear friend was a messenger of God's
love.
In creating the FCD centers in different places, we understood the need to do our
share, even if we didn't heave ideal conditions, even seeing that it looked like it would not
bear fruit. We were supposed to sow and plant, for others to harvest.
Yesterday I had dinner with old friends from the Movement and fights of
persons with disabilities. I could take part because I happened to be in São Paulo, for
presently I live in Goiânia. It was a meeting with those persons with disabilities that
belonged to the movement in 1977, 1978, 1980. I met these people and we mentioned
the beginning of the Fraternity, at a time that there were not many persons with
disabilities on the streets due to a complete lack of accessibility. A person in a
wheelchair in the 1970's or 1980's was a phenomenon! Everyone would stare and many
would give the person a few coins, just for being in a wheelchair.
Once I went out with a person in São Paulo by the name of José Carlos
Barbosa dos Santos. He is tetraplegic, English teacher and state coordinator of the
Movement. I was pushing his wheelchair. We were midway to our destination when we
saw a lady walking towards us, some half block away.
I saw she stopped and was rummaging in her handbag. I said "José Carlos, it
seems you are going to receive alms". He answered: "What are you saying!", I answered
"I really think so because that lady has a weird attitude, rummaging in that purse
therefore I believe you'll get a few coins"
Zé Carlos continued to doubt: "Oh no, it's your imagination, don't say such a
thing!. I Insisted and teased "Yes you are, we will get a bit richer with this walk", we
approached the lady, and she really gave him 10 cents, and he even thanked her….
This is how things were in the end of the 1970's and the beginning of the
1980's. I believe that this behavior happened because persons with disabilities didn't
show up in the streets, when they left home, everyone would stare and gape, therefore
many were ashamed to leave their homes.
I remember that something interesting happened when we started to create a
Fraternity center in a neighborhood. One of the strategies was to look for information in
drugstores were the families bought some specific drugs for certain diseases. At these
approaches the attendants would inform us were persons with disabilities lived and what
were their disabilities.
However, when we got to the address in order to confirm, the families would
deny: "A person with disabilities here? No, we don't have", we answered that we had
received information on part of the pharmacist even so they would deny and tell us we
had the wrong address. It was denial due to shame that required very intense work to
revert such situation.
Moreover because nobody becomes disabled or is born in such condition by
own will. Even so, the parents were ashamed, perhaps because our upbringing and
culture leads to such guilt feeling. The disability is not seen as part of life, it seems that
our education is made in a childish dynamics, looking for a magic life; therefore, in face
of a disability one starts to look for who is to be blamed. And not to "put the finger in the
wound" people thought it would be better to hide or deny the existence of the disabled.
This was one of the reasons the movement faced so many barriers in the beginning.
I make the record that in Latin American Catholic Church there were two
movement geared to persons with disabilities: one is the Christian Hope, at the time
leaded by a Chilean Jesuit, Aldo Giacchi whom Loudes met in 1975 at a meeting
convened by this group at Colégio São Luis. Two years later, in May 1977, we met
through Janete, a Peruvian Lady who was my secretary in Parapsychology and had met
the Fraternity at her homeland, as I had previously mentioned.
Christian Hope Movement values more the disease and the disability. Their
theory is that with the prayers of the person who suffers, his/her sacrifices and difficulties
to live, the person with disabilities may offer him or herself to God for the salvation of the
World and its souls; thus ends by doing a valorization of what lacks in this person,
considering the disability as it were a grace.
Fraternity, a movement that started in France with Monseigneur Henri François,
tries to value exactly what a person has. Thus, if the person is not identified with his/her
missing leg, blind eye, deaf ear, the person is what he/she is and not by what the person
has and not according to what is missing. A leg, eye, arm, hand are very important but
do not make a person, these are parts of this person, but not the person. A person
doesn't lose essence when limbs are lost. This is the big difference between the two
movements. Even God identifies himself to Moses as "I am who I am"(Exodus 3,14).
I remember a disabled in our group - who could use the wheelchair or Canadian
crutches. Once he went to the subway in the beginning of its operation. He arrived at the
station's turnstile at the Sé station and a safety person told him: "you cannot go through
because of the turnstile, the wheelchair will not go through" The disabled said "look, it
you can help me I can make a few steps" and got his crutches saying; "I will go through
with the crutches and you pass the chair for me. Can you do it? " The answer of the
angry employee was "See guy, don't you understand that the subway is not for the
crippled?"
The man took his crutches, went back to the wheelchair and left. When he
arrived at the group meeting he reported what had happened. Besides indignation the
question that came up was: "how comes the subway is not for the crippled if it is the
easier, quicker and most accessible means of transportation for us? Result: we gathered
around 150 crippled persons one afternoon at the same Sé station to jump off three
stops later, with the pretext of visiting the Vergueiro Cultural Center.
There were disabled persons of all types, with canes, wheelchairs, stretchers,
blind, deaf, a bald girl wearing a wig for she was undergoing chemotherapy, etc. And
when this girl, Heleninha, started to go down the escalator, her wig fell and someone
cried: "the girl's head rolled downstairs" so a huge havoc was created, it looked like a
world war, the subway stopped! If one crippled person created confusion - imagine
150 of them, it was like the end of the world! So the employees had to put all of us on
the trains in the midst of that confusion!
At Vergueiro station our exit was other havoc. After this episode, besides the
fact that we got the attention of the press, we also filed a lawsuit, which was won at the
Supreme Court ten years later in 1988, and the subway was sentenced to create access
and elevators in all stations that would be built from that year on. Also the company had
to make available at the not accessible stations, employees who would wait close to
staircases or escalators to help a person with disabilities who would be waiting at the
stairs or escalators, take the person to the train and tell those in charge at which station
the person with disability would get off the train,
We understood the fact as an institutional gain, with such actions and with the
performance of the movements, things changed. Little by little ramps, bathrooms,
elevators in different spaces such as churches and other places where only stairs
existed started to appear.
People who have no problems do not realize the difficulty that a minimal change
in the thickness of a rug may cause to a disabled person. For the disabled this increased
thickness is almost a wall. It means a huge hurdle to wheelchairs and for those who
have no strength in their arms. Today there are motorized wheelchairs, which at that
time we called it "electric chairs", and we joked, "Sorry, I don't mean electric chair, I
mean motorized chair". We even were able to have people remember the name, many
disabled used to say that they sat on an "electric chair".
After the start of the movement and several actions, we had a very important
year: The International Year of Persons with disabilities (1981). I remember that on that
year was held in Brazil a National Congress of Persons with Disabilities In Recife, with a
large attendance, inclusively Lourdes, I and several other persons from FCD as well as
members from other movements such as Elza and her husband, Ruizinho, Cândido,
Gilberto and many others; thus we were able to realize how much the groups - many of
them unrelated to the Church - were being mobilized. This phenomenon was very
prevalent in São Paulo.
We all met in Recife, there was a large attendance even with the difficulties
faced at the meeting places that did not have adapted bathrooms or ramps. That meant
that the first battle started when one had to face the lack of infrastructure for the
organization of the event.
When we arrived in Recife, there were already 48 or 50 groups organized by
father Vicente Masip, with the help of Messias, a wheelchair user from Recife that has
been the national coordinator. With Lourdes' coordination we reached other parts of the
country and increased the number of FCD centers to 250.
There was a kind of initial trend or expectation of the persons with disabilities
regarding the movement, based on the importance that society gives to appearance.
Based in this valorization, the first claims of the groups were always geared towards
material goods therefore the natural trend of the disabled person was to immediately
start fighting for wheelchairs, canes, crutches and even a van.
The basic thought was: "well in our group here we were able to gather ten
disabled, if we are able to secure a van, we will be able to go to different places much
easier than nowadays". Bur the Fraternity was not fighting for material goods.
Fraternity was fighting and still fights today first to change the vision of the
general population regarding the disabled. The society reinforces the image that persons
with disabilities are "poor souls, unhappy, sad and disabled… these biases expressed by
people hurt us, but when such idea is accepted by the person with disability, it will kill her
life. How may someone help a person who doesn't seem aware that he/she may be
helped? How to solve a problem if the person doesn't see a possible solution? Then
things get really difficult.
Then, Fraternity tried to work this aspect. We are made as God's image, the
same way any other person in spite of the difficulties that we have, more or less like
someone whose limbs are perfect. Besides, our difficulties may be external and visible
as with the physically disabled, or internal, that cannot be seen but also are difficulties;
also difficulties cannot be compared, for each has its own weight. As the poet says "each
one knows the happiness and sadness of being what he/she is". The important is to see
oneself as a person with rights and duties whichever are the circumstances.
Ruizinho, Elza's husband is an interesting example. He had the disease
commonly name "glass bones" (or "brittle bones disease") where the victim has to
amputate the parts that break in the body. He lost his legs, only the atrophied trunk
remained. He couldn't eat much, he was unable to do many things for the bones broke
very easily, therefore, he lived confined to his home for many years.
When the knowledge about his disease increased, he ventured out to study
and graduated in librarian sciences and worked at São Paulo University. He bought a
big automatic car, lived his life - the disability didn’t stop him. One day when he was
waiting for a green light at a crossing some thieves with a gun approached him from
both sides of the car saying: "this is a robbery, get out of the car quickly!" and he was
paralyzed, how he would get out of the car? The thieves insisting: "come one you
good for nothing, get out"
Until one of them opened the door and saw the small creature on the seat, with
very thin arms and hands and the automatic car. Baffled they went away and he went
on, when he arrived at the meeting and told his story which ended with the phrase
"finally it was worthwhile to be crippled".
It is enough to remember Lourdes' example. When would she think that she
would be able to travel the world, go to Latin American countries? She took part in a
march in Costa Rica, in Central America. Lying on her stretcher she held a poster while
we pushed her. Her poster said: "Fraternity yes, violence, no", in the midst of Avenida
Central in San José, the capital. The large number of wheelchair users and Lourdes on
that huge stretcher - stopped the traffic. She would stop the world! Can you imagine
such a thing in 1981?
We all have to contribute to the world's salvation. Nobody is prevented from
doing it just because has some type of disability. Everyone has to engage in this world
prayer otherwise we will not go ahead. There are still many hurdles, therefore we cannot
stop.
Certainly today it is easier to move and occupy the streets and public spaces.
But there are still thousands of other conquests to be reached. I would not be able to tell
which one is the most important. Perhaps the important thing is to know that the fights of
a group or class of people are very similar to those of other groups. There is the need to
create performance networks, to extend our hands to other segments, claiming their
difficulties so that the needs of all may be reached.
I had an interesting experience in Goiânia where I've been living the last 20
years working with youngsters and also helping council member Cidinha Siqueira, a very
cool disabled person who had polio and is so small that she is almost unable to propel
her own chair.
In 2007 or 2008, at the International Day of Persons with Disabilities celebrated
on December 3rd, she organized a ceremony to celebrate the international day at
Cruzeiro Square, one of the central squares in the city. She invited the mayor,
congressmen, council members, the military, district attorneys, police and different
authorities of the city. As usual, there were many speeches all stressing the importance
of the date. The mayor was the last speaker and he was brief, saying "we're finished,
let's leave". However Cidinha had obtained 50 wheelchairs that were hidden behind the
platform, and at the end she said: "now you all are going to try to use a wheelchair here
on the square to experience what are our difficulties" - and she was able to get them ride
the wheelchairs around the square.
The square's paving is made with clay bricks that deteriorate with time. As the
hurdles appeared, Cidinha said: "this is a flat square, imagine if this was an uphill street!
There were other surprises, she has arranged earplugs and distributed to the authorities
so that that they could experience the difficulties of the deaf and blind and canes to
experience the difficulties of the deaf and blind. It was fantastic! Do you know what
resulted from it all?
On the following year the municipality delivered 430 buses adapted with lifts to ll
bus lines. Therefore, If a person does not experiences the difficulties, does not have
sufficient sensitivity to perceive the difficulties of others. An onstacle in the sidewalk may
cause trouble to many people and not only for persons with disabilitiy byt for persons
who broke a leg and temporarily are using a wheelchair, for the elderly, pregnant
women, etc.
Certain people may take a long time to walk a block for their movements are
very slow because they have to go around a little stone or a twig on the ground because
they cannot step on It as they slowly drag their feet when walking; therefore it is very
important to have this type of perception and sensitivity regarding the difficulties of the
other.
Cidinha is someone who lives these situations in her day-to-day and decided to
take measures; therefore she became very respected and admired by all parties, PT
among them. The authorities didn't belong to her party, but being there, one may say
that they "felled in her trap".
I see this as a great change. Persons with disabilities used to stay at home,
sometimes were considered the shame of the family and today these same persons may
perform any role as a result of the fight of many movements for the common good.
In Brasília they had to adapt the Plenary Hall of the Congress with a ramp. Even
so on the day the access was ready, a congress woman said: "up to here it's ok, but I
still cannot attend to a meeting at the Board room"
So they perceived the need to do more changes so that the place would
become totally accessible. It seems that this was forecasted for July 2011, moreover
because the presence of a disabled person required complete changes in the space. It is
enough to thing that such person can be elected to the board, and the Board room is
located somewhere else.
It is common for us not to perceive the needs of others and remained focused
on ourselves. This behavior makes us think that if we are able to go through a certain
place, others will also be able to do so - but this is not true - we have to pay attention to
the needs of others, even if we ignore which are these needs, we have to help them to
achieve whatever they need.
Thus, I believe that the political space also has to be occupied in the same way
as recently women took office in different areas of the Union. It is the first time we have
so many women in the ministries. This is very important because there are things that
only women are able to see, only women know how difficult it was for them to be
professionally accepted and win their place In the society.
I understand that a world ruled only by men is necessarily incomplete. Women
see what we don’t see and vice versa. The world has to be a common work, done not
only by one group or class of people. A common world has more chance of being fairer,
more equalitarian and complete.
This morning I was reflecting on the role of the Church nowadays. I see that we
are still very limited. We are an organization that in its hierarchy is constituted only by
men - this makes us poorer, unable to see to the pain of humankind. Unfortunately we
have not been able to accept this fact yet. I believe that after so many years of the fight
of women and feminism, there is still a long way for us to realize the pains of the
impoverished. We, Christians as a whole, would have to be much more interested in the
realities of life, opening our doors for all groups: women, disabled, afro descendants,
native populations and so many others we are not even aware of.
We still exclude many, prohibit much and make our lives much more difficult, we
are still very much centered on ourselves, worrying only or mostly with our things. I
would say that this is not by malice, sometimes we have good intentions but it's not
sufficient. One has to have the experience and sensitivity to realize that the larger the
number of those who may contribute, the better and richer will be the end result.
We still have to take many steps. The mere fact of mentioning female
priesthood lights up a red light in many heads adorned with purple and many pretenders
to higher positions in the Church hierarchy. To mention homo-affective relationships
opens up the horrors of others, possibly all bitten by a blue fly. To wish for the election of
a pope from the third word is a blasphemy for some who think they own the world. To
mention the need to revise, in Brazil, the amnesty law that pardoned common criminals
who committed crimes against humankind, raises the hair of many uniformed and fanatic
sectors. These are all prevailing taboos in the XXI century.
Humankind is expected to do much more, but is afraid of the future, hides its
talents underground in spite of mentioning being very religious and God fearing.
I say that we should not be afraid of reality and life. God is greater. There is a
saying that goes more or less like this: Don't tell God you have a great problem. Tell
your problem you've got a great God" "If God is for us, who will be against us?" used
to say St. Paul. And was the belief in these ideas that the youth launched the National
Campaign against violence and killing of the youth that started among us and is
spreading in Latin America.
Let's gather our forces in the fight for justice and quality among everyone, for
we can only win if we achieve common good. Getting closer to people we thought we
would help, we felt more complete for we perceive that we've been more helped than
we've been able to help. This was what I've experienced in the movements of persons
with disabilities, or as I said before, in the contacts with the dwellers of Papagaio slum
in Belo Horizonte, the experience that gave meaning to my life.
Image: Cover of Magazine Open Letters, 1987
Headline: Open Letters – Christian Fraternity of the Sick and Disabled – Year XIV, No. 57, June 1987. Three black and white
pictures: 1. Maria de Lourdes Guarda on the stretcher and thousands of people on the street; 2. Maria de Lourdes on the stretcher
surrounded by children, nuns can be seen in the background; 3. Maria de Lourdes and a group of persons with and without disabilities
who are posing in a patio in front of a construction.
Footnote: FCD – 15 years of Fraternity in Brazil.
Bibliographic reference: CARTAS ABERTAS. FCD: 15 ANOS DE FRATERNIDADE NO BRASIL. São Paulo: Salesian Professional
Schools, June 1987
Digital Collection: Memorial da Inclusão.
Donation: Cedipod.
Image: Article in Newspaper Folha da Tarde, Monday, March 16, 1981.
Disabled start International Year.
Picture: Maria de Lourdes Guarda on a stretcher with to man and a woman at her side.
Headline: Maria de Lourdes lives for 34 years on a bed.
Around 400 people with physical disabilities went on Saturday to the City Hall to participate from the opening ceremony of the
International Year of Persons with Disabilities that will continue in São Paulo with round tables and creation of “fraternities” in
neighborhoods, unions and other call entities.
Odete Cláudio Machado, blind, read a Braille text about the Declaration of the Rights of the Disabled opening the ceremony who had
the attendance of the general secretary of the Brazilian Bishops National Conference (CNBB), Luciano Mendes de Almeida,
congressman Horácio Ortiz, chairman of the Engineers Union, Corregidor Judge Renato Talli and representatives of difference
entities.
The Movement for the Rights of the Disabled – MDPD that organized the ceremony programmed for the rest of the year a series of
activities through which it intends to “make the society aware of the real image of the disabled as human beings, defend their rights,
eliminate environmental barriers, update the specific legislation and denounce cases of exploitation and humiliation”.
Cândido Pinto de Mello and José Evaldo de Mello Doin, two of the eight coordinators of the MPDP stressed that the organization has
a political character, does not belong to any party exists since two years and is an instrument of pressure of the disabled, rejecting any
form of assistentialism in the treatment of disabled”
Difficulties: Most of the attendants to the opening of the International Year of Persons with Disabilities had to overcome many
difficulties to get to the plenary hall where the ceremony took place. For instance Ms. Maria de Lourdes Guarda who due to a disease
that calcified part of her backbone, lives for 34 years on a bed with wheels, had to be carried by four persons. She takes part in
assistance entities for about ten years and believes that the best results that may be achieved with the International Year of Persons
with Disabilities is to create an awareness of the people and authorities in the sense that the disabled are able to produce, but the right
conditions have to be created yet.
Digital Collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Document.
FCD –Christian Fraternity of the Sick and Physically Disabled – São Paulo Regional
Team – Alameda Rio Claro, 190 – 01332 – São Paulo.
Declaration.
For accreditation purposes for the preparatory meetings of the National Congress of Persons with Disabilities summoned by the
Association of Physical Disabled of Brasília, we declare that the following persons are part of the São Paulo State delegation:
Ana Maria Morales Crespo, Benedito de Paula e Silva, Carlos Lelis Faleiros, Heloisa Helena Ferrari Chagas, Isaura Helena Pozzatti,
José Evaldo de Mello Doin, Leila Bernaba Jorge, Romeu Kazumi Sassaki, Thomas F. First, Vinicius G. Vianna de Andrade.
São Paulo, June17, 1980.
Signed: Maria de Lourdes Guarda, in charge of FCD Regional Office; Father Geraldo M.L. Nascimento S.J., FCD Regional Councilor
FCD
Digital collection: Memorial da Inclusão.
Donation: Heloísa Chagas
Image: Black and White picture. Maria de Lourdes is inside the van in which she travelled around the country. The seats would be
removed to make space for the stretcher. In this picture only the last seat may be seen. Picture by de Varner Morandini Jr.
Digital collection: Memorial da Inclusão.
Image: Black and White Picture. Maria de Lourdes Guarda at a Movement meeting.
From left to right: Luiz Celso Marcondes de Moura, José Evaldo de Mello Doin, Candido Pinto de Melo, Rui Bianchi do Nascimento,
Leila Bernaba Jorge, Robinson José de Carvalho e Maria de Lourdes Guarda.
In: Disabled show their value and courage in the fight for their rights.
Newspaper: Gazeta de Santo Amaro, São Paulo, 02/21/1981.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Color picture. Maria de Lourdes between father Geraldo Marcos Labarrére Nascimento and the today’s Congresswoman Célia
Leão. Behind them a banner reads: be welcome.
Digital collection: Memorial da Inclusão.
Donation: sister Leonor Guarda.
Color Picture. In forefront can be seen Maria de Lourdes and three persons in wheelchairs. In the back are seated approximately 18
nuns in White robes. At the center a man standing with his back to the observer (probably Father Geraldo.
Digital collection: Memorial da Inclusão.
Donation: sister Leonor Guarda
Gilberto Frachetta
Image: Color Picture of Gilberto Frachetta during an event to celebrate the 25th anniversary of the AIPD. Gilberto looks smiling to the
wooden dinosaur skeleton, symbol of the pioneering attitude of the members of AIPD and greets the symbol with his right hand. In the
background we may read the banner of the event with the phrase: “We perceived that the government of that time wanted to “assume”
the International Year and that their actions where structured in such a way that the disabled would be represented by authorities. We
decided to organize and build “our” International Year. We started to work for this goal in 1980”
M
y name is Gilberto Frachetta. I was born on May 2, 1943 at home through the
hands of a midwife at Vila Anglo Brasileira a poor neighborhood in the eastern part
of the city of São Paulo.
I have just turned 69. I've been the second child and after me came three more
siblings: twins and a sister. We were six children, father and mother. According to the
standards of the time we were a middle size family, today it would have been seen as
huge. At that time it was usual to have four, five and up to ten children.
The street where we lived at Vila Naglo would end at Praça Cruzeiro, a cul de
sac hill with a cross on top of it, therefore the name. This neighborhood with its unpaved
streets, no water piping was surrounded by richer neighborhoods or middle class
neighborhoods such as Vila Pompéia, Sumarezinho, Vila Ipojuca, Vila Romana, all with
paved streets lined with trees, electric power, telephone lines, etc. For the kids our
neighborhood was excellent for we would play carelessly on the streets.
Daily we would play soccer, marbles and another game that consisted in pursue
the other player's marble and if we hit that marble we would be able to keep the
adversary's marble. We would jump over other's hunched backs, we would cross the
street jumping on one foot and someone would try to make you fall. In spite of the
poverty our childhood has been much better than that of the kids of the richer
neighborhoods.
This is how I spent my childhood. We used to fight, obviously. Sometimes we
would invent other games, because we used to invent games all the time; we would also
try to upturn chromes, spin tops, build cars with wooden wheels and we would grease
the wheels so that the car would slide better….
I did my elementary schooling and when I reached high school a problem arose:
my father, who was a public servant, was debased by a decree signed by the governor
at the time, Jânio Quadros. At that time Jânio eliminated from the pool of public servants
some classes of servants that were defined by letters, thus my father who was a "D"
class worker, which meant he was in charge of a department, was debased and his
wages decreased. This was illegal, but anyhow at 12 years of age I had to start working
and my studies lagged behind. Later I resumed my studies and did a course on land
surveying and later took an Economics Course at the São Paulo University. At that time,
in 1968 the course was located at Rua Dr. Vila Nova parallel to Rua Maria Antonia
where was located the School of Philosophy, Science and Letters of the University of
São Paulo, and on the other side of the street, Mackenzie School.
I worked as a land surveyor at a company exactly at the time when companies
started to used data processing, therefore I took a computing course and systems
development and thought: "now I'll do a business management course", I took the
entrance examination and was admitted to the University of São Paulo, but I had a
surprise in the first year, because that was a basic year for Public Administration, Business
Administration, Accounting and Actuarial Sciences. I liked economy so much that I
changed my option for the second year.
In 1968 a university reform was being discussed, therefore there was a huge
mobilization. This climate reached not only students but other sectors as well as laborers
movements. I was there when the famous fight of USP and Mackenzie students took
place. It entered history as being a fight between Mackenzie students and USP philosophy
students. But we, from the Economics school were the first to occupy the school in the
fight for the university reform. Later there was the occupation of the Law School of USP at
Largo São Francisco, and then the philosophy students, close to the date of UNE's
congress in Ibiúna were many students ended arrested, joined us.
At that time I was a freshman. This fight took place because the USP students
were raising money for the congress and the Mackenzie students started provoking us
because they had a different ideology. The provocations grew until the day the fight
broke. It was an unequal fight because while we used stones, the Mackenzie people
used guns, rifles, and torches that ended up burning the Philosophy building.
At that time I didn't use a wheelchair. The building had two floors and when it
started to burn I was in the upper floor with a young girl and guy. Soon the Fire Brigade
appeared and rescued us. I was one of the last to leave the building. After this beginning
full of adventure, I took the remaining of the course at University City, in Butantã.
During these years as student, I was part of the academic center of the school
and was elected to be part of its secretariat. Later they arrested the president and vicepresident and I did not want to hold any position at the academic center for the first
secretary was being persecuted by the political police, so I ended up assuming the
presidency. Due to the work as president of the academic center I was able to take only
two subjects during that period, it was the minimum in order not to flunk. In 1970/1971 I
became part of Central Board of Students (DCE - Diretório Central dos Estudantes) of
USP, which had its own board.
My graduation only took place in 1975. In January of that year, I and five friends
from school decided to travel to Recife, Pernambuco, we went by car and on the second
day we had the accident that left me paraplegic. It happened in a town called Realeza,
about 100 kilometers from Governador Valadares, the best known town in the region.
We were four men and two women in a four doors car. At the time safety belts
were practically inexistent, and that car didn't have them. I was seating in the back and
when we fell, the door on my side opened and I was thrown out, I hurt my backbone, I
broke a vertebra and had a medullar lesion which affected the leg movements. The
other passengers were not seriously wounded. The driver hurt the shoulder and the
others just suffered a few scratches.
As Realeza didn't have medical services, I was taken to Manhuaçu were the
doctors did an x-ray and said that there they would not be able to do much. My friends
then hired a small airplane and brought me to the Clinics Hospital (HC) in São Paulo. At
the arrival I was hospitalized in the Orthopedics department. By coincidence some
nursing guy knew my father and when he saw the family name, Frachetta, he was
scared and checked it out and tried to help me. He went to see the director of
orthopedics but he was on leave. I ended up being operated by a beginner, that was his
first surgery and later I found out that the surgery had not been well done, besides the
fact that he forgot a gauze dressing that remained for five years inside my body.
In March 1975, while I was in hospital my father passed away. The process to
become a useful person started in December 1975. I was discharged from the hospital
and went home. At that time there were no disabled performing formal jobs, they would
be seen on streets as vendors selling sweets or asking for help - and I thought: "What
now? What will I do in life?". I was 33 years old.
Becoming disabled is a strange process because we usually do not receive the
news "officially". We find out little by little…We change beds just as other patients until
we perceive that the other patients leave on a wheelchair and we don't. The physician
would say: "it's OK one day you'll walk…" but as time goes by, we end up realizing that
our situation is more severe than we thought, and my case has been aggravated by a
medical error.
Before leaving to Recife I was trying to change jobs. I had arranged a job at
Deca, from the Itaú group with headquarters in Paraíso neighborhood, but the accident
took place and I ended up out of the labor market. At that time I got the idea of taking a
Radio and TV course by correspondence. It was an American School, the Occidental
School that I was able to attend grace to a scholarship granted by the Lyons Club
through the father of a friend, for I was unable to pay for the course. So I put up a table
in a room and started to fix radios and TVs and lived out of it.
Our situation improved due to a lawsuit we won against the State regarding that
Jânio Quadros' law. We were able to rent a house in Pompéia, on a street with running
water and all the other facilities. Before, we used well water. Doubtlessly our quality of
life had improved. There I met people, made new friendships although I continued to go
to Vila Naglo. I went on with my life until in 1978 a friend who had studied Engineering
said he knew someone who was also in a wheelchair, and this person together with
others were creating a movement of the disabled.
The person he knew was Cândido Pinto e Melo, an active movement member. I
met new people who gave me rides and between the end of 1978 and the beginning of
1979 I started to attend this group called Movement for the Rights of the Disabled
(MPDP) and began to become aware of my situation. I started to fight for what t the time
we called "social integration". One of the aspects that attracted me most was the
economical side. It was apparent that only those who had infra-structure to move around
took part of the movement; probably I was one of the poorest members, therefore one of
the few without own means of locomotion.
The participation in this group was important because it gave me awareness not
only of the situation but also of the points that should be in the claims agenda; therefore I
believe that the legacy that this movement left me was that of taking the disabled out of
their homes so they would start to fight for their rights.
The situation of the disabled was very complicated at the time. One of the
biggest problems was lack of accessibility, because this practically prevented those
without resources to leave their homes. There were no adapted buses, which made the
entry into these vehicles very difficult. Thus, the discussion about the freedom of coming
and going was very important. Another important point was the rehabilitation process. At
that time, rehabilitation was focused only in physical and medical aspects. We
understood that this process had to be enlarged so that it should give the means to the
disabled to plan their lives and be able to overcome that traumatic situation.
It is complicated when someone at a said moment starts to find out that other
people are able to do things this person cannot. This difference makes the person to see
him/herself as a limited individual. At the time we called this phenomenon "psycho-social
trauma". Our goal was to discuss the best way to elaborate a new life project. We
concluded that for us as well as for the society as a whole we would have to be prepared
for this reality, therefore rehabilitation should encompass other aspects of life. At that
moment it was fundamental to overcome the trauma of limitations, and practically no
rehabilitation center had skilled professionals to deal with this issue. At most a social
worker would be able to make the hospital rent a wheelchair and sheets. This was the
case when I left the clinics hospital at a moment when my family was facing difficulties. I
thought that what this professional did was extraordinary.
At that time, we didn't want much, we wanted the then called "social Integration"
presently known as "social inclusion". We found out that the first thing to be achieved
was accessibility. Secondly would be this new type of rehabilitation with a wider scope.
With time we realized that in the professional aspect either the persons didn't have a
profession, or would have to change professions to be able to work; therefore it was
necessary that rehabilitation would deal also with this issue, and what was being offered
was not sufficient.
Following this discussion, came the issue of schooling, because the person with
disability could not interrupt studies or have no access to them. Other points were the
cultural issues, sports and the right to a political and social participation, as well as
voting rights - this because at the time the disabled were exempt from voting and at the
same time there were no incentives so that they would vote. The prevailing culture put
the disabled at the margin of the society as if we were second class citizens. This
viewpoint caused the disabled to be seen as persons who could nothing in their lives
and should be supported and cared for by their family members.
In this scenario, it was obvious that we did not have access to practically no
service offered by the society, and only persons with very high purchase power could
have access to good rehabilitation. It was elitist paid treatment, the remainder of the
population would be unassisted.
Our agenda was built having this scenario in mind. In this sense, 1980 has been
a very important and fruitful year for the movement because 1981 would be the
International Year for Persons with Disabilities, and the year before was dedicated to
children and 1982 to the elderly.
We realized that the governments at the time wanted to "assume" the
International Year and that their actions would be structured in the sense that the
disabled would be represented by the authorities. We decided to organize and build
"our" International Year, thus we started to work to reach our goals already In 1980.
The movement was open to everyone, so a disabled could participate from the
meetings with voting rights. We still didn't have a board, an appointed or elected person
to represent the group, but we had a coordination that allowed us to have an organized
structure. Our meetings were held at Faculdades Metropolitanas Unidas at one of the
crossings of Avenida Santo Amaro. Other places that served as out headquarters were
Colégio Anchietanum and a school located at Avenida Nove de Julho. It is interesting to
note that since then, all these places already were accessible to the disabled, except the
bathrooms.
The movement got structured and in 1981 we organized several round tables
on architectural barriers that the disabled had to overcome in order to have access to
some spaces. At the time, that was the main issue. We used to invite architects and
engineers to take part in these discussions. At the end of the year we had an almost
complete agenda of claims. Our work has been done slowly but was seriously focused in
the "social integration" as we used to say. It was a set of claims that went beyond the
public space.
It was a new way to see disability and it encompassed a discussion about which
services the society offered to the disabled and all the areas that create an organized
society, therefore, the logo of the International Year was "Full Equality and Equal
Participation Opportunities". This logo gave the sense of amplitude we were fighting for
and kept the fight going as we took the streets.
However, at this moment something happened to me. A favorable sentence to a
labor lawsuit I had filed due to irregularities that took place when I was a trainee. As I
won the cause, I received a large sum of money regarding four years of work - I used the
money to pay my debts, buy a car (an adapted automatic Opala from GE) and changed
my driver's license. I was also able to pay for a surgery at an expensive hospital,
Hospital Albert Einstein.
Exactly at the time I had achieved my independence of movements, for now I
could come and go, I suffered terrible back pains. In the meantime I had learned that
orthopedists only analyzed bones. A friend referred me to a good neurosurgeon who
diagnosed a medullar compression. After several X-Rays and a myelography the
diagnosis was confirmed. The surprise was that it was found out that the reason for
those pains was the gauze dressing that the Clinics Hospital doctor forgot there five
years ago! The gauze was removed - the doctor cleaned the area and gave the
dressing. I was very indignant. I keep the medical report to this day. I was becoming
hunched for not being able to withstand the pain that caused excruciating pains to get
into the car, among other things! It was only after this surgery I started to live again.
Going back to the agenda of the International Year, the preparation included
round tables that discussed a different topic each week, thus for approximately five
months we covered almost all points we considered important. From the result of each
meeting we compiled the issues and were able to create a list of claims.
Between 1979 and 1981 we were able to gather 200 or 300 hundred people at
the meetings, it was fantastic, like a large circle of participants. Also there were not
disabled people who attended the meetings interested in participating. Also people from
other cities would come to the meetings (disabled or not). These connections allowed us
to hold meetings outside the city of São Paulo.
After the event of the International Year we've been able to present all these
needs in a complete list. It was a long process but we've been able to formalize all
claims only at the end of 1986. It was the time needed to articulate the movements In
São Paulo and the other States.
In this period Onedef (National Organization of the Entities of the Physically
Disabled) focused on the disabled. At the same time there were different entities for the
blind and deaf. Those individuals with mental disabilities, whom nowadays we call
"intellectual disabilities” - were represented by institutions such as Apae (Association of
Parents and Friends of the Exceptional) and Pestalozzi Institute.
In 1986, a meeting in Belo Horizonte we closed the list of claims that was
presented before the Constitutional Convention in 1987. We prepared a document that
encompassed all areas, all sectors and was presented not by a congressman, but by us,
the persons with disabilities, through a Popular Amendment.
The Constitution foresaw that with a minimum number of signatures, a group of
citizens could present proposals directly to the Plenary in Brasília. The movement got
organized and collected signatures in different states, in total we got 51 thousand
signatures, from these about 25 thousand - 50% - were collected in São Paulo, where
I've coordinated the action. In order to present our proposals, we established a National
Committee made up by five people, among whom I've been included, to go to Brasília.
There we have been greeted by the President of the Constitutional
Convention, Congressman Ulisses Guimarães. I believe there must be some
photographs depicting the act. In 1988 the Constitutional Convention was approved,
and everything that today is written in the Constitution is the result of that list. Onl y two
claims were left out. One of them proposed that if the persons with disabilities received
any type of pension or support due to the disease from INSS (Social Security) or other
Institute and would go back to work, the benefit would be temporarily suspended. The
work would be the main source of income of these persons; but when unemployed
they would resume receiving the pension. We considered this a very important point
for even unemployed a person continues to consume - but when back to work, this
person besides consuming becomes productive and contributes to the society and to
the Social Security, i.e, the person "is" a citizen, therefore it was an issue of citizenship
and self-esteem that would bring many benefits to the society, but it was ruled out
under the statement that this would be a unemployment insurance and it would not be
included in the Constitution.
The other ruled out claim was the request that all means of electronic
communication, mainly TV should have a means to communicate to the hearing
disabled, something like close captions that we have nowadays. We presented the
claim because we believed that information should reach everyone. Congressmen
suggested to have such a system only in public TVs, we didn't accept, private TV
networks also should have the system.
It has to be clarified that there were some differences in the movement. One
sector believed that it was important to have employment quotas others disagreed
stating that the persons with disabilities had to become professionals just as anyone else
and the result of work should be evaluated as that of any other person. They understood
that with a profession, culture, knowledge and accessibility, the persons with disabilities
would be able to compete with anyone. On the other hand, those for the "quotas" pointed
out that reality was different, and quotas would be required while social inequities
persisted.
I am summarizing two currents of opinions of the time, there has been no
consensus. It was decided to leave the issue to the Constitutional Convention and it has
been passed that quotas would be valid only for public service. This situation changed
when Federal Law 8213 was enacted short afterwards - it mentions that it is mandatory
for the companies who have over 100 employees to have a percentage of disabled
workers.
Viewpoints change with time. Today we realize than in fact that affirmative
policy was the right position. I say it because even if some persons with disabilities are
being hired presently, they do not have all the ideal conditions to compete with other
persons at the labor market.
I believe that the issue or work goes well beyond a job and compensation.
There is the very important meaning of personal achievement, because as someone
works and has an own income, the dependency decreases or even independence is
achieved. This is doubtless a way of inclusion. In the same way it happened with
women. They conquered things that they had not imagined they would conquer and
nowadays they depend less and less from their husbands. First it was: "Now I don't
depend on him for my things, you don’t have to buy me my lipstick" and then they
didn't need this and that, soon they will not need the husbands altogether!"
I remember that a congressman presented a very "creative" proposal. He
wanted companies to discount from Income Tax more or less the equivalent amount to
the wages they paid to persons with disabilities. We fought this proposal and won. It
became clear to us that all the hiring would happen more due to the benefits the
employer would have than due to the skills of the professional. We only accepted the
idea that the companies could deduct some taxes if they made adaptations to their
facilities. We understood that this was the right way to go, because then the company
would be recovering the investment made in order to have the environment accessible to
disabled workers.
In 1989 was enacted the very encompassing Federal Law 7853, and later Laws
10048 and 10098. If we put these laws together they look almost as by-laws, because
everything we need as persons with disabilities is there. There is only one problem, there
is no punishment for those who don't abide to the laws - and today this is our toughest
issue.
Everything we've conquered since the 1980's, in terms of legislation, changed
the way of how we related to the authorities, until 1988 there was practically no
legislation, there was only the constitutional amendment, I believe one from 1977
regarding accessible spaces. It was an amendment that had to be regulated and had
limited scope. It was done by a congressman who became paraplegic.
Before 1988 we went to the authorities and were patted on our backs, we heard
promises and the "justification" that there was no appropriate legislation to deal with the
subject. What there was, was a lack of political goodwill, politians saw no benefit in
addressing the needs of the disabled.
After the Constitution was enacted came the laws and we started to have legal
support, however there was a problem: the legislation didn't determined a term, and the
projects had to be included in the budgets; other problems also arose, even so there has
been a change in the scenario and we thought we could speak from "equal to equal"
remembering that politians could be substituted in the coming elections.
Doubtlessly the legislation improved the citizenship conditions. Two things have
changed: the existence of legislation and the increased awareness on the issues of the
disabled by the society. Today these individuals are seen as persons with potentials to
be used in the development of many activities - it is enough to give them access.
Although lack of access is still a prevailing problem, we have a better informed society
aware of this issue and supporting our fight.
After the accident I went back to work in 1981 in a wheelchair. There were other
movement members who worked. Cândido Pinto de Melo worked at the Instituto do
Coração (Heart Institute) at the Clinics Hospital in the data processing area; we had also
among us a teacher, a watch repairman who had never been seen as persons with
disabilities because they used crutches. This is important to show that the society didn't
have a clear idea of what is the definition of a person with disabilities or on the position
of these individuals in the society.
Once in 1975, when I was still staying at the Clinics Hospital, I was hearing the
news about the inauguration of the subway being broadcasted by radio Excelsior. The
journalists who were at the Sé square, looking at people going in and out of the station,
asked the President of the Subway Company: "Isn't this door too quick to close?" He
answered that there would be no problem because the subway would be used only by
people who worked or studied" his answer was bothering me until I realized that he
meant fully active individuals, i.e., that means of transportation didn't take into account
the retired and other people - it had no social role, it was geared only to production, to
the company.
Later, a subway architect attending one of our round tables explained that when
they created the North-South line of the subway, there were elevators in the project,
according to the models existing in other countries, but the president of the company at
the time eliminated the elevators for he considered them a unnecessary cost for the
users would not need elevators. Today the company is being required to install them at
all stations at a much higher cost. This reflects the cost of the mentality of that time when
only those who didn't have locomotion difficulties were considered as members of the
society - the others were excluded.
As East-West line has been built after the enactment of the new Constitution, all
stations have accessibility. The only station in North-South line that had accessibility
from the very beginning was that of Tietê Terminal, due to the connection of the subway
to the bus station otherwise it would not be accessible as all other on the same line.
We did several manifestations regarding subway accessibility between 1983
and 1984. They were fun because we had many persons in wheelchair going to Sé
square to take the subway at the same time. It was havoc for the employees to help
people go down the escalators in the wheelchairs. There was the case of a tetraplegic
that was going down to the station and was knocked down, it was horrible and showed
how the subway team was unprepared to deal with the disabled.
The following year we repeated the manifestation at Sé Square, but then we took
a birthday cake. The director of the subway company appeared at our headquarters to
schedule a meeting with us. He suggested the creation of adapted bus lines that would run
parallel to the subway - a complete absurdity - and according to what he described these
wewrw not event buses but SUVs. The only reason he wasn't kicked out of the meeting
was because nobody there was able to kick him!!
For the manifestations we prepared we also used a different tool we called
"lollipops". As making banners was very expensive, we would make a cardboard poster
which was held up glued to a piece of wooden lath. I bought several four meter long laths
and at a meeting asked for help to saw them to the right size. Two blind persons
volunteered for the job and I wondered what would come out of it, but they did an excellent
job. We wrote our claims on the posters and when to the subway with phrases such as
"Where is our accessibility? ", "We have rights, we pay taxes" and many others.
We would also made flyers, but in small amounts due to lack of funds - therefore when we
distributed them we would ask the person to read it and pass it on. There were notions of
awareness in those flyers.
Until the Constitutional Convention everything was very hard, we had to fight
each step, therefore we are aware that what is written in the Constitution is the result of
our fights. It is a pleasure to see the result of our lives.
Today we live in a different reality. There are new militants, but the political
aspect doesn't have such a great weight. I have the impression this happens because
younger people didn't have the experience of the social and students' movements that
were active in my college days. I experienced this not only at the University but also at
home. Before becoming a public servant, my father worked at a bus company and took
part in strikes. In one of them he was fired. Also neighborhood associations had strong
actions and I even became a director of one of these associations,
When I was fourteen I started to work as an office boy at Banco Auxiliar de São
Paulo, it was a good job. In spite of my young age I was soon promoted and decided to
strike for better wages, and I succeeded! Therefore, since very young I realized that It
was worthwhile to claim for rights, although at a second strike I was dismissed because
instead of interrupting work and staying inside the bank, I decided to go to the movies
with a friend. I wouldn't say that I had a proletarian mind, it was more of a social state of
mind which bloomed when I entered the University, for there I've learned the sociological
aspects of these issues, for ideas would range from extreme right to extreme left in
student's movement.
So we spent the 1990's making different claims, however the movement started
to lose it strength at the end of the decade, because it started to fragment into different
specific causes. Thus, there was an association geared only for sports, other for
professional aspects and so on.
Unfortunately other opportunistic groups were formed and they started to
occupy spaces within our fight. They defended a different type of relationship with official
authorities, something which relied heavily on "exchanging" favors and interests. They
came so aggressively that they reached the management levels of the movement. But I
see that the present moment brings a new phase, with new people who although don't
have a clear awareness of their roles, is starting to have a broader view of the situation.
These are people who believe that their specific problems have to be solved within a
larger collective scope and not individually.
This is doubtlessly a transition process, for I remember that in 1984 during
Franco Montoro's term of office as governor we'd created the State Council for the
Issues of Persons with Disabilities. This was possible only because his government had
a democratic bias, it had created this opportunity and we were able to participate.
We continued to have an opening when Luiza Erundina was elected mayor of São
Paulo. During her term, the persons with disabilities recreated the Municipal Council of the
Disabled (CMPD), which was created by a decree and in 1992 and we've been able to
transform it into legislation which is still in force. I, who took part in these two processes,
used to joke that as I was in charge, I was open to praise and criticism… but mainly to
praise….
With regards to the decree and the law, we tried a new experience creating the
Council only with persons with disabilities, because when we've created the State Council
there was a proposal to have 50% of disabled and the rest of different entities and
government members. The government was against it, therefore we proposed a tripartite
council: one third with persons with disabilities, one third of service providing entities and one
third by government representatives, then we achieved consensus and this structure has
been approved.
However the division became more complex because persons with disabilities
were represented by entities, and each entity after having been elected would appoint its
representatives, therefore at the beginning we were nine, nine and nine members in a
total of 27. With time I realized that there has been a kind of cooptation based on
"exchanges" that made government and service providing entities to vote together,
always guaranteeing the majority for the government part, which allowed it to elect the
president
Therefore, in 1988 I decided to present a new proposal for the structure of the
Municipal Council of the Disabled: formed by 100% of disabled, without government
presence and it remains so until today.
Conade (National Council for the Rights of Persons with Disabilities) (70) is making
pressures to have CMPD formed by 50% of government representatives and the other
half by the civil society. 1. Conade is an entity created to follow-up and evaluate the development of the
national inclusion policies for the disabled. Conade Is part of the basic structure of the Special Human Rights
Secretariat of the Presidency of the Republic (law No. 10.683/03, clause 24, sole paragraph)
This is the condition to have CMPD participate from Conade, however Conade
includes in its definition of "civil society" the persons with disabilities as well as service
providing entities and other institutions. In my opinion, it's another model that has the
features of "government council" for as it has half of the power, only what the
government wants will be approved. I am not against government participation - I am
against the government having this excessive weight in the council.
I believe that all this long track of fights has been a very good experience for it
allowed the disabled not only the possibility to organize and mobilize but also to discuss
and decide. In this sense I understand that the model used in the Health Council should
be considered as a parameter. Established by Federal Law 8142, it is made out of 50%
of users, 25% of healthcare workers and 25% of government representatives and
healthcare services providing entities- a format where the government is present, without
being majority and those with higher stakes, the users, represent 50% of the entity.
This is the ideal model. It is present in the councils that have best performance i
Brazil, which are those of the health sector. I could experience it during the four years in
which I was a member of the Health Municipal Council in São Paulo as a representative
of persons with disabilities. I have been elected for a two year term and later reelected. It
was a school for me. Now, in January 2010, after two year off the council, I've been
reelected. I still believe in this model for it allows a balanced discussion between
government and users, which implies in much negotiation.
The Conade model was created during Fernando Henrique Cardoso
government and was maintained by the Lula administration, it consists of a static
structure. Half is government and the other half is represented by civil society were
the persons with disabilities are a minority, and the remainder by other institutions.
Monthly meetings are held in Brasília, but in practical terms it doesn't change the
reality. There is no interest in real changes, and besides they force other councils to
adopt the same format, i.e., with 50% of government participation,
Presently, I'm retired after working and contributing for 38 years to Social
Security and represent the segment of persons with disabilities at the Municipal Health
Council of São Paulo, as well as from an educational project - which is volunteer work at
the Municipal Elementary School Des. Amorim Lima , where I serve as member of the
Pedagogical Council representing parents.
_____________________________
70.. Conade is an entity created to follow-up and evaluate the development of the national inclusion policies for the
disabled. Conade is part of the basic structure of the Special Human Rights Secretariat of the Presidency of the
Republic (law No. 10.683/03, clause 24, sole paragraph)
This is a novel project, and this story started in 2001 when I enrolled my daughter Diuly,
who decided to stay with me after my divorce. I started to participate from the school
council with other parents, teachers, students and employees, and two years later in
2003 I was elected president of this council. As there were many complaints about the
low quality of teaching, we decided to discuss the pedagogical process - it was then
when that we found out that nothing that was written on paper took place on the day-today of that school. We created a committee and several surveys, one of them regarded
given classes. We found out that 83% of geography classes and 60% of Portuguese
classes were not given!
The school principal introduced to us a person who was acquainted with the
pedagogical model of Escola da Ponte in the city of Oporto, Portugal, showing us a
video about this experience. We decided to use this method as a solution for our
problems and created our project based on the Portuguese experience although
adapted to Brazilian reality. The project was ready In September of 2003. In the
following month when Aparecida Perez, the municipal secretary of education scheduled
a visit to CEU Butantã, I handed her the project and invited her to meet the School
Council. She came to the meeting where presented the guidelines and details of the
project, she agreed with our initiative and provided the necessary resources, we then
hired a pedagogical team to implement the project and in January 2004 we started the
new methodology which now is in its 8th consecutive year. In 2005 I've been elected for
the Pedagogical Council where I still work, as well as the Health Council that I've already
mentioned. These are activities that I enjoy and which give much pleasure even if they
are pro bono.
I am also planning to hit the roads again driving my old 1992 Fiat Elba. I like
travelling very much but had to leave it aside for a while due to other activities. I already
had four car accidents and in one of them I lost a GM Opala. I was returning from an a
visit to the Emergency Department where one of my nephews with a respiratory problem
had been treated treated when at the beginning of Raposo Tavares Highway the brakes
failed and the left tire locked. I lost control of the car and it hit a pole and the car bended
into a "V" shape - the result was that my nephew ended with an exposed bone fracture
on his leg and I with one fracture close to the knee. We've been helped by firemen and
taken to the Clinics Hospital, the car was in such bad shape that I sold it in parts and
bought a VW Variant which was stolen from my house garage and with it the wheelchair
that was in the trunk. Next I bought my first Fiat Elba.
I love family parties and travelling, I believe I've inherited it from my father. The
family grew with many nephews and we hold regular parties. These meetings take place
every two months, always making up a celebration theme. All this after working for 38
years, plus the years at students' and persons with disabilities' movements, after starting
to work at 12 delivering goods and carrying baskets to and fro at a grocery store.
Speaking specifically of movement of persons with disabilities, we did much but
also nothing has been recorded. it stayed in a few pictures and in the memory of
persons, therefore these reports are important to that today people can learn something
about our history of fights.
I am just a small fish in this process. We've had people with great values. One
of these days my sister was looking at some pictures and found a picture of 1981 when
we did the National Meeting in Recife, Pernambuco, showing the São Paulo delegation:
we were all there… Maria de Lourdes Guarda was a person who fought very fiercely
although bed ridden.
For this all I have to thank for your attention and send a hug to those who
helped to build this reality that we have presently regarding the conquests of the
disabled.
Image: Newspaper O Globo – Sunday 12/07/1980
Headline: Movement approves program in defense of the disabled
São Paulo (O Globo) – At a meeting at the State Legislature with the participation of 400 people, the Movement for the Rights of
Persons with Disabilities approved the program Letter of the entity, establishing the principles for its performance, with views to the
following year, declared by the UN as the International Year of Persons with Disabilities.
One of the coordinators of the movement, Prof. José Evaldo de Mello Dorn explained that the movement expects to gather the 15
entities that deal with the issue: It is a political movement, but unrelated to any party, with no bureaucracy for it has no president. Its
goal is to promote the lobby of persons with disabilities, so that these persons may be seen without pity or paternalistic attitudes,
becoming the owners of their own destiny. He also mentioned that only in São Paulo there are 2 million persons with disabilities.
Program Letter. This document repudiates the marginalization of the disabled resulting from the wrong notion that “these would be
inferior beings in what concerns their professional skills and respectability, unable to make their own decisions and ignorant for not
being seen at schools”. The program letter also repudiates “the existence of institutions of long permanence, were disabled and elderly
deteriorate solitary, humiliated and unassisted until their deaths”.
The document rejects the “prejudice that disability would be a divine punishment for a committed sin” and mentions the lack of
training of health and rehabilitation professionals who inadvertently assume an attitude of superiority towards their clients, not asking
their opinion about the needs and options of these same patients”
The program letter of the movement also rejects the “feeling of pity that the society shows towards the disabled and the cleaning of
their consciences by giving alms to the panhandlers, by making donations to social institutions and by promoting parties thinking in
brightening the day of persons with disabilities”. The letter denounces the existence of architectural and environmental barriers that
prevent the disabled to have free access to schools, voting sites, work, leisure places, etc.
JOINT ACTION: “Persons with disabilities consider themselves as an integral part of the society and demand the effective respect to
their rights and duties in order to fully participate of the community life and contribute as socially useful beings” according to one of
the specific principles of the movement. According also to the same document is ruled out all and any benefit with the features of gift,
privilege or concession, being claimed the rights of citizens of a country and full human beings”
The actions of the movement are based on the principle that only a “conscious joint action with pressure power may enlighten and
mobilize the State and society”
According to José Evaldo Dorn, the entity differentiated two types of disabled: those who according to their position in the social
pyramid have the conditions to work and provide their own means of living; and those who live at the mercy of their families, with no
productive life and not even the slightest rights of citizenship.
Digital Collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Cover pas internal pages (twelve) of the booklet of the Movement for the Rights of the Disabled (MDPD)
Cover: Movement for the Rights of the Disabled (MDPD) – Some of its history, principles, Program Letter and how to participate
from the movement.
Image (Page 1)
MOVEMENT: MORE THAN 10 YEARS OF FIGHTS: In mid-1979, a series of meetings were held with some individuals and
entities of the state of São Paulo, interested in discussing the organization of persons with disabilities and their fights for social space
and not only assistance, as were characterized the initiatives in this area. From these monthly open meetings came about the idea of
creating a wide open movement that would lead the disabled to get organized in the fight for their rights. We always worried with the
content of the action, based in the organization and fight for rights without commitments to government, economic or social elites. It
was the quest of persons with disabilities and all those really solidary with their fights, in the search of social space and breaking
tutelage – the persons with disabilities speak for themselves about their needs, and not through others, regardless how professionally
competent these others may be.
The movement unites with similar initiatives in different states and adheres to the “Coalition Pro National Federation of the Entities of
Disabled” today divided in the National Entities of the Physically (OANDEF), Visually and Hearing disabled, that carried out the I
National Meeting of the Entities of the Disabled in Brasília in October 1980.
[Page 2] On December 1980, at a meeting at the São Paulo State Legislature, was adopted the name of Movement for the Rights of
the Disabled – MDPD and approved a Program Letter with the principles of the movement. In March 1981, due to omission of the
government authorities, the Movement decides to officially inaugurate the INTERNATIONAL YEAR OF PERSONS WITH
DISABILITIES at a solemn act at the City Council. On the following year, as a result of its performance and intrinsic needs, MDPD
was made official, assuming a structure of one of the entities that took part since the beginning of its establishment.
From then on, the Movement continued its actions faithful to its principles and is acting open and democratically: its board (elected
yearly) is made up by 5 members and keeps open monthly meetings (on the second Saturday of each month). The Movement is
contributing to the creation of other movements and similar entities in different places of the country as a mean to strengthen the fight
for the rights of the disabled. At all important moments of the national life (social movement, movement for direct elections (Diretas
Já), Constitutional Convention, etc) the Movement has always been present defending the rights of the disabled and the creation of a
fair, fraternal human society.
Image.
[Page 3] MDPD ACTS DEFENDING THE RIGHTS OF THE DISABLED. The movement is acting as an open entity for all
interested parties: entities and natural persons (disabled or not) who are interested in the social rights of the disabled, having as
platform the principles of its Program Letter.
In the more than 10 years of fights, the Movement tries to act in different fronts: against discrimination and prejudices, supporting the
discriminated ones; giving incentive and supporting the organizations of the disabled in different regions of the country, supporting
national entities; taking part in technical studies that eliminate discrimination (technical standards, projects, studies, etc.); carrying
awareness campaigns by means of publications and organizing public manifestations (such as the National Day of Fight, every
September 21st); incentivizing the creation of National, State and Municipal Council in order to have government policies in the field
of education, health, transportation, leisure, sports, housing, work, etc.; applying pressure and cooperating with governments
towards…
[Page 4] … the fulfillment of its duties with citizens, mainly regarding to the disabled; filing lawsuits to assure the rights of the
disabled. In this sense, the landmark was the lawsuit won in 1991 against the São Paulo subway company, binding them to build
ramps and elevators in all stations.
[There is a drawing of a man on a wheelchair cutting a door frame with an electric saw.
Image.
[Page 5] HOW THE MOVEMENT IS MAINTAINED: Each partner pays a symbolic small monthly fee and those who can afford
contribute with a higher amount, however the monthly fees translate into a small revenue. In order to keep its activities, newsletters,
printed material, trips, etc., the Movement carries out promotions and special funding campaigns, thus it is able to keep frequent
contacts with its partners and other disabled, many of whom due to locomotion difficulties have in our correspondence their main
source of information. To make financial contributions is to be solidary with our fight!
WHY BECOME A MEMBER: Becoming a member of the Movement is a way to participate, contribute and be informed. To become
a member it is necessary to agree to its principles and fill out an enrollment card and whenever possible attend meetings. The
Movement has two types of members: Effective members (Natural Entities) and Entity Members (Legal Persons). If you agree with
our principles and want to support us, become a member. If you belong to an entity and agree with our principles, make the the entity
a member.
[Page 8] WHO MAY TAKE PART IN THE MOVEMENT: MPDP is a movement open to all everyone (disabled or not) and
particularly to all persons with disabilities (independently of the disability) that are willing to fight for social rights of the disabled
within its pragmatic principles. In order to take part, it is enough to get in touch with the movement. To get to know it better, join one
of our activities.
HOW TO CONTRIBUTE WITH THE MOVEMENT: One may contribute disclosing our documents or financially. If you wish to
contribute financially, send to our headquarters (Rua Dr. Cesar 850, Santana CEP 02013 – São Paulo, a nominal check on behalf of
the Movement for the Rights of the Disabled, writing on the back “deposit only on the account of the addressee”, or making a deposit
into account No. 5-012121 at Banco Real, Branch 411-3, Rua Teodoro Sampaio.
Image.
[Pages 6 and 7] The central page of the booklet is a mix of newspaper cuttings glued one on top of other in different positions. It is
possible to read some headlines: “The disabled claim their rights” “Disabled get only promises of better transportation”. “Movement
says that laws discriminate the disabled”, “Disabled prevented to assume a public position”, “Disabled inaugurate their International
Year”, “Disabled already have an action plan for 1983”, “Disabled already may become journalists”, “Disabled have a cycle of
debates”, “Disabled discuss urban architecture”, “Disabled wish a democratic health system”. “Disabled will disclose program for the
current year, “Disabled want improvement in transportation”, “The movement debates the rights of the disabled”, “Inaugurated the
Year of the Disabled”, “Few conquests marked the Year of the Disabled”.
Image.
[Page 9] PROGRAM LETTER (December 1980)
“This program letter is an integral part of the by-lays of the Movement”
Introduction: The problems of persons with disabilities in our country are contained in the broader text that encompasses and mixes
with the establishment of the Brazilian people.
The marginalization of different social segments (persons with disabilities, slum dwellers, blacks, homosexuals, prostitutes, etc.) is
disguised by the paternalistic trend of the Brazilian elite. The idea that prejudices do not exist and all social segments are integrated is
disclosed an embodied in protectionist laws enacted top to bottom that mask the reality.
Paternalistic entities have been pacifically accepted for a long time without questions and no awareness of a reality that each day
becomes more threatening. In this sense we still see the marginalization of disabled person in the following situations:
[Page 10] Wrong conception that the disabled would be inferior beings in what concerns professional abilities and respectability,
unable to take decisions by themselves; existence of long stay hospices were elderly and persons with disabilities deteriorate alone,
humiliated and without assistance until their death; prejudice that disability would be God’s punishment for some committed sin;
stigma of alleged possibility of contamination assigned to all types of disabilities; lack of technical skills of health and rehabilitation
entities and professionals who assume a position of superiority not asking the opinion of persons with disabilities about their own
needs and options; the feeling of pity that society shows towards persons with disabilities; conscience cleaning by giving alms,
donations to social institutions, promoting parties to brighten the day of the disabled; existence of environmental barriers preventing
the access of the disabled to school, voting sites, work, leisure places, etc.
Image.
[Page 11] Existence of disabled who haven’t become aware that their universal and constitutional rights are being breached, for these
persons have been conditioned to accept discriminatory behaviors of the family and society feel grateful for being treated as invalids.
BASIC PRINCIPLES”:
1.
2.
3.
4.
Human dignity is complete and essential with no need of previous requirements;
Access to life, work, freedoms, full individual fulfillment is not a gift or a concession of a person, community or state, but
an indefeasible right of us all;
The state has the intrinsic duty to give the community the means for the complete fulfillment of all of its subjects;
The community or part of it has the duty to check, organize and make pressure, whenever needed, in the sense that the
state fulfills its goals.
[Page 12] Stamp: Movement for the Rights of the Disabled
Rua Dr. Cesar, 850 Santana São Paulo SP. CEP 02013 – Phones (011) 852.5943 – 2807313.
Bibliography: Movimento pelos Direitos das Pessoas deficientes, São Paulo: s.d. (several pages).
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo.
Image: Newspaper Folha de São Paulo, August 14, 1981
Disabled will hold their first congress. Recife will host from October 26 to 30, the 1 st Congress for the Disabled. President João Batista
Figueiredo will be the president of honor, and the event promoted by the National Coalition of Entities of the Disabled has the support
of the National Committee of the International Year of Persons with Disabilities and the government of the State of Pernambuco,
besides government entities and individuals
The Congress will have as central theme the “Reality of Persons with Disabilities in Brazil” and the following subjects will be
approached: the State and the rights of persons with disabilities, government policies regarding persons with disabilities; work;
situation and perspectives for persons with disabilities; education and professionalization; family and community life of persons with
disabilities; prevention measures to avoid becoming disabled; urban spaces; transportation and architectural barriers; legislation and
the disabled and the organization of the disabled in Brazil.
As of next 16th until September 15th those interested may enroll at the headquarters of the Congress, at Rua Conselheiro Portella 253,
Espinheiro, Recife; for more information please get in touch with Maria de Loudes at the phone (11) 284-5493 in São Paulo.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Black and White Picture. In a room approximately forty people pose for a picture. Bottom of the page bears the symbol of the
UN for the AIPD and the title of the meeting: “I Brazilian Congress of Persons with Disabilities – October 28 to 30, 1981 –
Recife/Pernambuco Convention Center”
“Ist Brazilian Congress of Persons with Disabilities – October 28 to 30, 1981 – Recife/Pernambuco Convention Center” Among the
participants are: Maria de Lourdes Guarda, Leila Bernaba Jorge, Isaura Helena Pozzatti e Gilberto Frachetta.
Digital collection: Memorial da Inclusão.
Donation: Gilberto Frachetta.
Image: Folder of the State Council for the Issues of the Disabled (CEAPD) São Paulo
Cover: Engraving of three people carrying on their right hands a huge pen, On the engraving one reads: The Constitutional Convention
without people will not create anything new”. In the center of the cover the phrase: “Nobody has such a big problem that it will
prevent the persons to fight their own rights: 1. Right to live, work, compete and participate; 2. Right to fight barriers either created by
nature of man: 3. Right to complete in equal conditions; 4. Right to Justice (and not charity); 5. Right to adequate projects to overcome
difficulties and destroy prejudices; 6. Right to rehabilitation and to be able to produce; 7. Right to adapted transportation; 8. Right to
equal educational opportunities; 9. Effective right to work; 10. Right to a real social integration.
For a new Constitutional Convention that will integrate persons with disabilities”.
Back of folder. Coordination: State Council for the Issues of the Disabled, Governor Franco Montoro term of office.
Folder of the State Council for the Issues of the Disabled (CEAPD), SP.
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo
Image: Black and white Picture. Event: “The disabled and the Constitutional Convention”
Opening panel of the event carried out in the city of São Paulo in November 1985 at Bandeirantes Palace. At the center Cândido Pinto
de Melo speaks to the audience. The wall on the back is covered with posters of the event with the phrase: “Nobody has such a big
problem that it will prevent him to fight for his rights”
Event: “The disabled and the Constituent Assembly”, November 1985, Bandeirantes Palace/São Paulo. Press consultancy, Picture by
Edvaldo Ramos.
Digital collection: Memorial da Inclusão.
Donation: Dr. Linamara Rizzo Battistella
Isaura Helena Pozzatti
Image: Color Picture of Isaura Helena Pozzatti: “Just to remind you that the International Year of People with Disabilities took place during the military regime! At that time no
one wanted to count the number of disabled persons in Brazil. We knew at that time that if the number of people of disabilities were disclosed, someone would have to take some
measure”
M
y name is Isaura Helena Pozzatti. I was born in Londrina, in the state of Paraná in
1950. Therefore, I became 60 years old in 2010. I am the fourth daughter of a
family of Italian immigrants. I was born with a congenital malformation. At that time the
doctors did not know what is was. They believed it was due to the fact that my mother
fell during her pregnancy. They also believed that the fact that I had been born in a
hospital favored my survival. However, at the time the medical team was not able to
explain what the little bag on my back was, nor how my bone marrow was out of place.
Due to the advice of the doctors, I was brought to São Paulo when I was almost
three months old. The Clinics Hospital had been just founded. Therefore, I went to Santa
Casa were I was operated, somewhat due to the curiosity of the neurology staff there.
My mother used to say that there were more than 20 physicians in the surgical theater.
Although I have not been diagnosed with hydrocephalus, which is a rare case in this
type of deficiency, they forecasted that I would live only 6 more months. But with time the
forecast was extended to a year and longer, and I survived until today.
At that time, Dr. Renato Bonfim, the founder of AACD (Association for the
Assistance of Children with Disabilities was an orthopedist at Santa Casa. He had
created the association on August 03, 1950, in the same month and year in which I hád
been born. This was a school for handicapped girls in a house located in downtown São
Paulo. I used to tease him saying that he had prepared that space for me. I arrived there
when I was 6 years old.
Until then, I had stayed more time at Santa Casa than with my family. When I arrived at
AACD I was one of the youngest kids, but I started the attend classes. We were 20 girls,
all with poliomyelitis. And although my case was different, I was raised as if I had that
disease, which was better known at the time.
With this diagnosis, I was placed in a device and received crutches to be able to
more. Besides, I had severe urinary incontinence, another disease practically unknown to
doctors at that time. Even with all these symptoms I had a completely happy childhood at
AACD. I learned to live with my disability, just as my friends who lived there learned how to
live with their disabilities. It was a process with few difficulties, because Dr. Renato Bonfim
was absolutely adamant that we should take part in the social life of the neighborhood. As
we did not have a playground in the house, we were taken, walking, to the Fire Brigade
Headquarters, located in a street behind our school, were we enjoyed different activities.
At that time, AACD was close to the old Campos Elíseos Palace, in the
neighborhood with the same name. Later it was moved to Ibirapuera. When we behaved
well or on a holiday, we went to the palace to play at the gardens. There was even a
pond with ducklings! Other activity for each Sunday was to attend mass at the Church of
the Sacred Heart of Jesus. We had reserved seats among the church benches. On
festive days, we were invited to have breakfast with the boys, at their school, that exists
to the present date.
Our life was so integrated to the neighborhood that we even fought with the
neighborhood kids, and this made us feel indiscriminate. This type of relationship was
lost when AACD moved to Ibirapuera, to an adequate site, donated by a governor. For
the construction of its headquarters, the association received several donations.
However there we were isolated. There was already the Public Servant's
Hospital, there were still ranches in the region. We had neighbors but they lived far from
us because Avenida 23 de Maio hadn't been built yet, and it was farther to walk. Another
thing that changed at the new AACD was that as there was more space available, it was
possible to have boys and girls together. Then it really became a rehabilitation center.
From this moment on, we started to feel that we had normal classes with different
teachers, and also there were more employees at the headquarters.
It was different from the house at Campos Elíseos were we helped with
cleaning, in the kitchen and even with laundry chores. We took part in all activities
performed in the house. All children, regardless of age cooperated dusting furniture,
polishing the floor, usually on Saturdays, which was cleaning day. This was an excellent
experience for us. I am very grateful for taking part from that AACD, because as you
see, I did not die. As I said, I am 60 years old and today I live a normal life. My difficulty
was to go back to my parent's home.
Another important fact was that thanks to the association I was able to make
friends. We created a group of girls of the same age that was considered the "little terror of
the house". We did all the mischiefs possible, as any physically normal child. This
happened because we had no idea that we were disabled, and therefore could not do
certain things.
We even made friends with the neighbor's parrot, a boy that climbed the wall
and would stick his tongue at us. This was something terrible at the time! And we threw
pebbles at him. We ended up finding he had a parrot. Whenever we called the parrot, it
came to our side. We hid the bird. When the boy found out, he came crying with his
mother to our doorstep. But none of us would say were the parrot could be. The
employees of the house had no idea where the bird was hidden!
We also poached the pantry for bananas and cookies. There was a stairway
and we could not put the lights on out of fear that some employee would find us. Then
we would go down on crutches. One of the girls would be on the outlook to tell us if
someone was approaching us. What was the punishment? Stay without dessert - which
consisted of bananas! This was the harshest punishment the employees would inflict us.
When Dr. Renato, whom we considered our father at the time, was told about our
mischiefs, he punished us differently. He took us to his office were we sat, frequently on
his desk, everyone well behaved. We drank guaraná and had cookies while he posed
questions on Brazilian History, a subject he loved.
As we knew that we had to answer the questions, so we studied hard. Mainly
about the war with Paraguay, that was his passion. He would even make a contest! The
winner would go to Rio de Janeiro with him. The trip was an activity that he was adamant
that we should participate from, as from other things in his life.
He was a very wealthy person. His house was a mansion on Avenida República do
Líbano; we were taken there on weekends in groups of three or four girls. There we learned
how to eat legumes and greens, etiquette notions, how to use silverware and good table
manners. His wife taught us all that. We were considered as daughters of the couple, as they
were childless. I can say that due to Dr. Renato, what we had at AACD was the very best in
assistance to children with disabilities.
AACD has a structure of a boarding school, with mid-year and Christmas
vacations. When my parents and those of the other kids came to fetch us at vacation
time, Dr. Renato would ask how much money the family would be able to pay for the
coming year. He knew my father was a worker and had three other children. Sometimes,
my father said: "Doctor, this year I will not be able to give you money". And he would
answer "No problem, she comes back after the vacations". Still today, at 92 years of
age, my father mentions this gesture of kindness.
In reality I used to return before the end of vacations because I didn't like to stay
home with my parents and siblings for a long period of time. Everything was great fun in
the first week. But all of a sudden I missed AACD and my friends. Besides, my mother
thought I had to spend all the time seated and quiet at home, watching other children
play. I could not go out, run, ride a bike, I could do nothing.
That was her opinion, but at the association we always found a way to play; we
took off the orthesis and sat down or crawled on the floor to play. We also used to
invade the part of the building which was under construction to play with the masons put
things out of place hide their tools and other mischiefs. We also crossed Rua Borges
Lagoa to play in the forest within a property that was located on the other side of the
street, while teachers and employees were worried trying to find us. Imagine if we could
do than nowadays in that area!
My mother tried to prevent me from playing with other children in the
neighborhood with whom my brothers played. Then I would cry, throw a tantrum and
started to say I wanted to go back to AACD. Because there, in spite of some reprimands
from the teachers, hidden from Dr. Bonfim, we could play and get dirty as any other
child.
Besides, there was an aggravating circumstance regarding my mother, she had
a trauma due to the fact that I had urinary incontinence. This was the hardest part in my
relationship with my family. It was during this period that some doctors at the association
decided to research my problem.
As there were urologists working at the association, they performed a bladder
surgery in order to try to find a cause. Everything was very new and my life expectancy
had gone far beyond their forecast. Therefore, they didn't know what to do. At the same
time, for me staying at the association was a soft evolution, moreover because other
children with the same lesion were institutionalized as well as many more with
hydrocephalus.
During this period, AACD received a Kombi car. As a result some children went
to school as semi-boarders, for there was transportation available to fetch them and take
them to school, this was important, because at that time, no school accepted children
with disabilities, for minimal that disability might be.
Children with other disabilities found strange the fact that I used diapers and
made fun of me. I would not let it go, and it was war, as I have always been aggressive I
wanted to retaliate, one got beaten, the other would cry and yet another would have her
ear pulled, etc. It was in this scenario that I've learned to go by and live with my
limitations. My mother was unable to accept this problem. She died at 79, but has never
been able to cope with this side of me. The fact that I was unable to walk, was easier for
her to accept.
I was always fourteen when I definitely went home. My family had already
moved from Paraná to São Paulo. When I arrived, my family had no idea how to deal
with me, I mean, with a person with disabilities. At that time the rejection of family
members and our acceptance of them were not envisaged in the treatment. On one side,
my family was not prepared for that situation, on the other I started to feel rejected by
them. Many times I heard a phrase "Things of the world are not for you", which meant
literally everything: study, work, dating, marriage - unheard of! Everything that meant
living, in their viewpoint, did not belong to me.
At the same time I had finished at AACD what was then called elementary
school, the first four years of education. Dr. Bonfim wanted us to continue our studies.
He followed up our grades outside the school or away from S. Paulo. He was so
adamant that we should study that he used his good relations with influent persons in
the politic and financial sectors, so that some schools would accept children with
disabilities. He was so influent that the teachers of the association were paid by the
State government and the land for the headquarters had been donated by the governor.
Some schools really accepted us. Obviously all the possible obstacles were
there. There were no adapted bathrooms - we had to learn how to climb stairs on
crutches. We have been educated in such a way that we didn't have any difficulties
overcoming barriers. We have been really trained for it. I just had not been trained to live
with my family. And I assume this fact.
At home I had to be a little doll, within a glass dome. Those who know me know
that such thought never crossed my mind. It has always been a huge conflict. When I
despaired and cried, my mother would take me to AACD like "stay with her because I
cannot cope". That was the time when the AACD professionals would talk to her, and
meanwhile I would stay there. They tried to prepare my return to my family again, but it
has never been easy.
Thus, we had a normal childhood and adolescence at AACD. When I was 22,
they tried to get jobs for some of us. Unfortunately it didn't work, although we were at the
phase that we wanted to work and we had always been stimulated to do so. I also
wanted to work, although I had not finished my studies because my family did not allow
me to. Because of the family, I studied only to the 6th grade. I don't know how it is called
today - even so with great difficulties.
In 1972, an entrepreneur was finishing the construction of a hotel on Avenida
São Luis. He went to AACD with the proposal that all telephone operators would be
persons with disabilities. The Association sent the girls. I still worked with crutches and
orthesis, at that time I was not in a wheelchair. But some of us were already on
wheelchairs. These ones have been immediately discarded, although they have been
told that they flunked the test.
When we arrived at work, during a test period, the hotel was not operating. The
employee's entrance was the same sloped ramp used for the parking lot. We refused to
enter through the ramp. There was also a spiral staircase to reach the dressing room, but
it ended into nothing, and those of us using crutches and ortheses couldn't have access to
it. We complained and they let us come in through the main entrance. After all, the hotel
was not functioning yet.
Everyone thought it was very nice on his part and we started to occupy our
posts because we had taken a course to learn how to use the equipment, which at the
time were PBX and PABX.
But for our surprise, the place had some chairs with wheels for us to sit in front of
the equipment. It was quite complicated because the floor had holes through which went
the wiring, that haven't been closed yet. It was very difficult because all of a sudden the
chair would slip or we would slip or yet we would place the crutches into the hole …
Besides, something unusual happened. We spent 15 days working, two people
in each shift - twenty four hours a day, in two tables, one next to the other. One day we
received a phone call with a bomb threat. I am speaking of 1972, when Israel was in war,
and the owner of the hotel was a Jew called Mr. Aron Sahm. He was a famous civil
construction entrepreneur at the time.
Although we were 20 years or older, we were late teenagers, perhaps because
we have been overprotected at AACD. So we behaved a little like teenagers. At the
same time we were aware of current news, therefore my colleague panicked when se
received a phony call, took off the earphones and told us what had happened. We called
immediately the person in charge of safety, he arrived laughing.
Later we were told that it had been a bad taste practical joke. And the history
was that we were the silly girls: Can you imagine! You believed it?" As I didn't like the
comment I mentioned to him: "Who is the owner? Where is he from?" There was no
bomb but it was very annoying.
Two weeks later, all the persons with disabilities were dismissed. They returned
our documents and labor documents with nothing written on them. My friend started to
feel ill and ended up in hospital. She had already been through a difficult situation with
the bomb threat that shook her emotional side.
We didn't understand it. We went home after a normal working day and next
day we were told that all vacancies had been filled up by physically normal girls. In
reality what the entrepreneur wanted to do was to use the name of the association for an
ad. Which by the way we thought it was of extremely bad taste. After two or three weeks
I became ill and was hospitalized. AACD filed a suit. It demanded the hotel pay our
compensations and that we would be compensated. I remember very well that I was paid
for the 15 days. I don't remember the amount, but I got my salary. I went to a store and
spent it all on LP's. I bought a heap of records. All the ones I wanted! I saved only the
taxi fare back! The girls were so traumatized that they started to say that they would
never work again they would not expose themselves anymore. In my case, my family
was very happy, because it was exactly what they wanted: they wanted me to be at
home. I only heard: "See!".
I say "my family" but there was an exception. My father even supported me. But
at home we had a matriarchal regime. Like Italian families. The fact is that he had no
difficulties in dealing with my disabilities. He was fine even with my urinary incontinence.
Sometimes, half hidden, my father helped me. He woke up during the night or in the
early hours and said: "Daughter don't you need to change the diapers?" Dad would stay
with light on the corridor, waiting to help me get into the bed".
I changed my own clothes. My mother never learned to place the orthesis or
anything else. But I would not allow my father to change me. I thought that if I would let
him do it, then things would get more complicated. So, if I wet the bed, I would change
the sheets. I learned how to take care of myself at AACD. I believe that my father
accepted better my conditions because he always knew that I felt normal towards my
disability. He knew I made everything normally, although I have faced several difficult
situations.
The obvious consequence was that adventure of working at the hotel frustrated
me. Even so, I decided to look for a job in my neighborhood. Against my family, my
brothers, everyone else's wished, I went to a factory that manufactured birthday candles,
those with little numbers that was on the same street were my parents lived. I convinced
the owner to give me the job. I told him: "You don't have to register me as an employee, I
just want to work, do something".
At AACD I have learned knitting and embroidery. But it was not what I wanted. I
was looking for an activity outside the home, have a boss to know how it felt. I know that
I ended up doing the whole the whole production of the factory, gluing little flowers on
the whole production. I had to deliver the basis of the candles ready for the finishing and
then the candles would return to the factory. Sometimes I would work until the small
hours of morning, because I had the duty of delivering everything on the next day. The
boss would bring the production to my home, where there was a cellar that my father
adapted for me, put a wooden table, etc. I worked standing up, because it was easier
this way. He even left a radio for me!
I ended up hiring six girls. They were all between 12 and 13 years old and lived
on my street. Three of them studied on the afternoon and helped me during the morning
period, the other three girls studied in the morning and worked with me in the afternoons.
They helped me get the boxes with candles, this type of things. But at a certain hour,
they would all leave. But if I had to go on, if I had production to deliver, I would work
overnight. Then my father would bring me a snack or dinner.
My brothers did not talk to me because they became angry. My mother also
thought that is was absurd to have me working. For them, I didn't need that. They could
give me whatever I wanted: sweets, a dress, a record. They would say "What is it that
you want?" I wanted to work.
So, one way or other, my father always tried to help me, even sometimes
fiercely contradicting my mother. I did this work for more than two years, until the
moment when unfortunately I had to stop using orthesis and had to use the wheelchair.
My spine became very crooked. The doctors said I should have never used an orthesis!
And I had used them since I was 5, which means that for 25 years I used orthesis and
crutches. Due to my lesions I should have been rehabilitated on a wheelchair. But I had
been a kid who climbed on trees and walls, rode a bike, I would tie my legs or would find
a way, bending the orthesis to be able to sit and even run!
When I went to the wheelchair, it was a terrible phase. Something happened
that no one was able to understand well, much less my mother. For the first time I felt
disabled! Until then, I didn't fell I was disabled for I did everything other children and
teenagers did. I even found a job by myself! At the time nobody spoke about depression,
but I spent a period crying often and didn't want to leave my room.
A short time before using the wheelchair, at a visit to AACD, I met a person who
was a recent volunteer there. She lived in a mansion with maids and a white gloved butler,
etc. She had gone to the Association because a friend of her was arriving from Europe where
she participated from a group of volunteers. They had an idea of establishing homes for
persons with disabilities in Brazil. It seemed a somewhat crazy idea, but she invited me to join
the group. At that time I was Interested in everything I was invited too. I didn't know if my
mother would allow, but the lady made available a private driver, and thus we went to the
meeting at the house of her friend who lived at Chacará Flora, a very plush place. I loved
them. But it was the first and last time I went to that house. I came into the good graces of a
lady that lived at the end of Paulista Avenue in a huge apartment. She was the
granddaughter of the former Brazilian President, Washington Luis. She was married to a
French or a Swiss man and had two sons. I was practically a teenager, and fell in love with
her because when she found out I had interrupted my studies, she decided to pay me a
private school tuition in Santana, besides the taxi ride to and from school - I got attached to
her.
My mother panicked with this situation, because I studied at night and my house
had a staircase. My mother used to fight because when it rained, my father stayed up to
help me climb the stair although he had to get up at 04:00 am to work. The funny thing is
that he never complained and she quarreled with me.
After all these things, I went to the wheelchair. I stopped working. My mother was
happy because I would stop studying for I had no way to go to school in a wheelchair. I got
crazy. I tried to do some stupid things. I took some of my mother's boxes of medicine. I
wanted to kill myself. In reality I wanted to call someone's attention....
One day I decided to get out of the wheelchair and throw it downstairs, get
down the stairs on my butt, get into the chair and try to reach the world. Then I saw the
steps, the street obstacles, there were no curbside cutouts. I saw that with a wheelchair
it was different! So what could I do to go out? What would I do? Face this situation first I
threw a tantrum. I ended up at the priest's home who lived just in front of our house. He
took me in. He was an elderly gentleman whom my mother respected because she was
very religious. At that time I had fought even with God, because I always tried to be the
opposite of my mother.
The priest took me in and I destroyed everything in his house: china, furniture,
everything I was able to put my hands on. I was beside myself and priest let me do It,
until he said: "You are not going back to your mother's house because you are very
nervous. I will take you to your sister's house". At the time she was already married and
lived very far away, in Butantã, while my parents lived at Serra da Cantareira.
As my mother had already slapped me several times, we went to my sister's. It
was a two store house, with bedrooms on the upper floor. This was not a problem for
me. As usual, I managed because I was very agile, something I achieved practicing
sports. I was staying with my sister but all I did was to think what I would do from then
on.
Once more AACD helped me. They found me a job as telephone operator at a
factory in the Lapa neighborhood. I stayed there over one year, working half time, during
the morning. While I worked at that company I continued to meet the group of ladies who
wanted to establish a house for people with disabilities. They would give me
transportation and I had no expenses. At one of these meetings, I met Father Geraldo, a
young Jesuit priest recently arrived from Rio Grande do Sul. It seemed that he had
already studied for two years in São Leopoldo, where he met another Jesuit, a Spaniard
who was bringing to Brazil the idea of a movement called Fraternidade Cristã de
Deficientes (FCD) (Christian Fraternity for the Disabled), a group that had started to work
in France and had already reached Spain.
The history of this group is very interesting. Everything started because a child
was born very sick, therefore the family gave him some freedom and allowed him to do
whatever he wished. One day he decided to become a priest. Nobody was against it. As
he was sick, he went to the hospital. But time went by and he did not die. When he was
already an adult, he decided to create a group, a Fraternity, with the chronic patients of
this hospital in this little town. This was how everything started.
So, the Spanish priest came to Brazil and met Father Geraldo, who then lived at
Colégio São Luis, here In São Paulo. At that time, a priest would daily take communion
to a lady who "lived" as Hospital Matarazzo - which years later changed its name to
Umberto Primo, in the Bela Vista neighborhood. One day, the Spanish priest and the
Jesuit were taken to the hospital to meet this very religious lady called Maria de Lourdes
Guarda. She was part of a religious group with no relationship with persons with
disabilities. When she heard about the FCD, she became thrilled. This happened exactly
at the same time when I started living at my sister's. I also had started to work and at the
same time I visited the house for the persons with disabilities that had just been created.
The lady's driver would come to fetch me, but I was very frustrated for being
confined to a wheelchair. I did not know how to cope with the situation of being a
disabled person. This was a terrible situation. I came from work and spent the rest of the
afternoon crying because I had many problems: my mother would not talk to me; my
sister was in a complicated situation having to receive me at her place, for she was also
against my attitude. The situation reached such a point that I thought: I will not
participate from anything. I do not want any other persons with disabilities in my life". But
father Geraldo gave my address to Lourdes. She started to write me, I did not answer
her first letters. When she invited me to visit her, I thought: What will I do?
She was hospitalized for over 20 years. I built a terrible image of her in my
mind: a person who lived at a hospital and who was bedridden… My revolt against being
disabled was so big that I started to imagine her as a thin boring person full of
diseases…. Once I wrote her a letter, which later became the subject of jokes. After
some time she would tease me saying that there were more tears than letters on that
piece of paper.
One day, in 1978, in February or end of January, I was watching a program at
TV Globo and I saw a very handsome disabled man giving an interview. I still worked as
a telephone operator at the time, so next day I phoned TV Globo in Rio de Janeiro to
know, out of curiosity who was that good looking man it was João Carlos Pecci,
Toquinho's brother.
As they gave me his phone number, I called him. When he took the call and
became aware of whom I was he said: "Gee, you are the first person with a disability that
talks to me!" I started to talk to him, just out of curiosity, and found out that by
coincidence he lived close to the ancient AACD, in Campos Elíseos neighborhood.
He invited me to his home. I went and we became best friends. I had a friend with
a disability and for me at the time, this was enough. In one of the visits I mentioned to João
"that poor sick woman" that lived in the hospital. At the same time that I had created a well
of prejudices regarding Lourdes, I was having a good relationship with João.
On February 11, 1978, a Saturday, I decided to make a good deed, I left work
and paid a visit to that "poor sick lady" who lived in the hospital. I took a cab, as I was
very agile, I closed the wheelchair and jumped to the back seat of the VW beetle. The
driver closed the door, pulling a cord.
I used to say "sick" because for me a person with disabilities lived at home, as I
did, by leaps and bounds. I arrived at the hospital and entered her room. She looked at
me and said: "You took a long time to come and visit ", I answered: "Do you know who I
am?" She said: "Aren't you Isaura? We exchange letters. By the way your last letter only
contained tears!"
I panicked, but it was literally passion at first sight. If there was a thing I didn't
believe until then, was in passion in the sense of friendship. After I met her, I never ever
could leave her side. From this meeting on I had two passions: João and her. João was a
little older than I. We talked a lot. He complained that girls without disabilities would get
near him just because he had a famous brother. At the same time, he wanted to know how
I lived, how I climbed the stairs at my sister's house, and so on. In his first book, for the fun
of it, he wrote that I climbed the stairs on my butt.
At that time I was living a huge crisis. I was very aggressive, always "hitting
first" to defend myself. I had really built a tall wall around me because I was tired of
being so attacked. Lourdes with her way of being, had touched me, and later I told her
my all life, I was not able to do absolutely nothing alone any more. I wanted to stay with
her 24 hours/day. Some people even thought I was her daughter, because she was also
blond and had blue eyes and I also have a fair complexion. This became a reason of
despair to my real mother who had a light brown complexion…
Lourdes was interested in the idea of the Fraternity and I started to go to the
meetings, always thinking in terms of movement, and not in terms of an entity. Here in
Brazil it would be an ecumenical movement linked to the Roman Catholic Church. We
had no idea where to look for support. It was then that we found a judge who had a son
studying at Colégio São Luís. Through him we found out that there were persons with
disabilities in the State's Penitentiary, and Lourdes started to visit these people in prison.
I gathered the courage to go there once, and couldn't do it anymore. This is how the
movement started, looking for persons with disabilities. It was an action of persons with
disabilities for persons with disabilities, as for instance those who had recently suffered
an accident.
Lourdes used to joke about the disabled prisoners saying: "All of them are labor
accident victims. Do you know why this one was shot in his back? Because he was
preying on his knees and the shot reached his spine. If he would be standing, the shot
would hit his butt, and there would be no problem, he wound not become a tetraplegic.
For her "preying" meant robbing, exchanging shots, it was a way of joking with the
situation.
I had a brief experience with accident victims while I was still at AACD. This
happened in the end of 1969 and the beginning of 1970, when I was 19 years old. At
that time many youngsters with spine injuries started to flock in from all around the
country. The majority of them were victims of car accidents. But some had suffered labor
accidents. Some came full of bed sores at the coccyx and back. It was when a social
worker, an AACD psychologist decided to create a group of disabled persons to warmly
greet this youngsters. We who have been children with disabilities, we have grown up
with the disability. They became disabled when adults. It was complicated for us to
perceive how it was difficult for these youngsters. This is why we tried to deal with the
situation in a light manner. As I've always been very talkative, my interest was focused in
making friendships and getting to know people. Playing and partying were my business!
I tool part of several of these actions at the time I stayed at AACD.
Regarding the Fraternity and the movement, in spite of still being depressive
and full of family problems, I decided to participate. Mainly due to the mad passion for
Lourdes, that thanks God was something devastating.
At that time, I resigned from the telephone operator position. Everyone thought
it was madness. I did it when I found out that the telephone operator working the
afternoon shift earned twice what I earned, considering that we worked the same
number of hours and did the same job! I had also found out that I have been hired
because they pitied me! This in a time when there was no legislation that would make
the hiring of persons with disabilities mandatory. Lourdes gave total support. In the
beginning I was worried about where I could work. She, always very optimistic said that
soon something would show up.
I did not work from March to July 1978 and lived at my sister's. At the same time I
took part in the movement that was giving its first steps. Then, AACD - always the people
from the association in my life - who never forgot me, told me that a large state owned
company was willing to hire persons with disabilities, the company was CESP - the São
Paulo Power Company.
The idea came to fruition because the head of microfilming, José Ernesto Tozzi,
had travelled to the United States to take a course, and at a microfilming bureau he saw
that they had some persons with disabilities working; therefore when there was an
opening in his area, he went to AACD, which was the sole rehabilitation center at the
time, and presented his proposal.
The association gathered a group, and instead of a competition, they applied a
test taken by persons with and without disabilities. If a person with disability would pass
the test, such person would have priority. The persons with disabilities were divided into
different groups therefore when I took the test I did not see anyone with a disability. I did
not have the training, I did not have sufficient schooling, but as I always loved to read, I
had a good level of information, and I've always been very talkative, and best of all, I had
Lourdes giving me her support.
Months later it came to my knowledge that a young man with a light disability
not confined to a wheelchair, and walked with a cane also passed the test. I was
surprised when I was informed that I have been approved and thought "What now?"
because we had no idea of what would happen. When I saw a large number of persons
with no disabilities, I thought what I was doing there and what would they be wishing for.
I started to work on August 10, 1978. As my birthday is on the 24th, I thought of it as a
gift! When I told Lourdes, she was happy and said: "great, and what is your next
dream?" I stopped and said: "I will only start working tomorrow" to which she answered:
"OK this is over, what is the next dream? Live by yourself? "
In February 1979, when six months had elapsed, Tozzi, the person responsible
for the idea told me: "You went through the three months of observation, I requested the
HR department for 3 more months and you also passed the test! I will travel on business
to Baurú and when I am back I want you to give me a list of persons with disabilities that
I will give to other companies to have them hire these persons". Tozzi was a very nice
person. Everyone loved him at our department.
At the time I was very much involved with the movement. There were protest
marches, meetings, travels, and engagements that took place on weekends. At the
time, eventually I had to leave work early to practice sports, an activity I resumed. My
passion was to play basketball. In spite of being short, as I was very agile, I played well. I
started to take part in national games.
Still in 1978, short time after resuming sport practices, during the prolonged
September 7 holiday we had a national championship in Rio de Janeiro. In November
I've been called to the Female Basketball Team. The team would travel to the PanAmerican Competition for Persons with Disabilities, also in Rio, that took place on
different dates from those Pan-American games for physically normal persons.
Tozzi thought it was fantastic that I did these wonderful things. When he
became aware that I have been chosen for the Pan American Games team, he was
even more enthused. Although I had been hired only a few months ago, Tozzi wanted
the company to pay for my air fare and also asked that I should be released for the
whole month. Training was performed in São Paulo, but later I would have to spend a
week In Rio de Janeiro. He made me go. I was apprehensive but he gave me loads of
incentive!
Unfortunately the plane on which he and other employees were flying exploded
on the way back from Baurú to São Paulo. I learned about the accident early in the
morning on the same day, because I would start work at 8 a.m. and left work at 5:30 pm.
In spite of having heard the news in the radio, I didn't believe it. It was a terrible drama! I
panicked when he passed away. We didn't work for 2 days, mourning him. When I
resumed work there was already someone in Tozzi's position. It was an employee of the
sector, an analyst biased to work with me because I had a disability. He wouldn't say it
directly to me, he told it to others, and the information that he didn't want to work with the
"crippled" reached my ears. This new boss created a war climate that lasted for about
one year. I cried every day during this period. He would come to my work station and
punch the table, just to frighten me.
To complicate the situation even further, after the Pan-American games, I was
called for the Olympic Games, and at the same time have been practically hired by a
club in Rio de Janeiro. During that period, one weekend I would play in Rio and the next
weekend in São Paulo. I would go to the bus station of Fridays; sometimes I would
return Monday morning and would go straight to CESP. That was what I liked.
I had a full agenda. When I was not playing basketball, I was travelling with the
Christian Fraternity of Persons with Disabilities, an activity that I did not want and could
not abandon. Lourdes was the state coordinator she had been elected for the national
coordination of the Fraternity. I, as her vice coordinator had to assume the State of São
Paulo. I also was completely involved in the preparations of the Internal Year of Persons
with Disabilities (AIPD). At the time we had several centers of FCD in the capital and in
cities such as Campinas, Piracicaba; Americana, Santa Barbara do Oeste, Atibaia,
Mairiporã, etc. I had to visit the centers to give incentive to the participants with
disabilities. My life was so agitated that I even forgot my family.
On September 11 of that year, when I came back from the National Games in
Rio, I rented a studio. My brother decided to help me. He said he would pay half the rent
for six months. Besides he gave a bed, that I jokingly said it was a third hand one, a five
hand mattress, because it was torn. At that time my quest was really to continue my
activity in the movement. I was already very much involved. I was a group coordinator
and a State coordinator. I would even give up sports, but not the Fraternity.
It was when I received an invitation from Romeu Sassaki, who also took part in
the movement, to make a lecture at PUC (Pontifical Catholic University) at a Social Work
congress. I was invited because I was one of the few persons with disabilities who
worked at a large state owned company of the size of CESP. I said fine, but the event
would take place from Monday to Wednesday, and my lecture would be on Monday
morning.
At that moment my head was spinning because there were many events. The
preparation for the International Year was just one of such events. There was also the
first meeting of Persons with Disabilities in Brasilia, where we had 500 disabled
individuals! There were native Brazilians with disabilities, everything you can imagine!
We had to take off the door of the lodging's bathroom in order to buy a ramp to give
access to wheelchairs. And in the midst of all that I was invited for the PUC Congress.
The invitation arrived to my department at CESP. My boss called me to his office and
gave me a phenomenal reprimand, and for a change, punching the table - which was his
method of intimidation. I remember well one of his phrases: "You may get an invitation
from the Pope and I will not release you".
The event would take place in a month's time, but due to that conversation, I
told Romeu that I would not be able to participate. I could not miss work. I could not try to
get a sick leave certificate because if something would be mentioned in the press, and
my boss saw it, I would be in trouble. I needed that job. Romeu didn't take it easily:
"Isaura, this is impossible! You have to come" A short time later he told me that he had
sent a note to CESP's HR department. I said" This will create a difficult situation and I
will be dismissed".
At the HR department, there was an old employee with some decision power.
He had been sick and spent some time on sick leave. He came back with a leg problem.
He had a strong limp and used crutches. This gentleman sent the invitation to the
administrative manager, who was a colonel. At the time of the military regime, it was
common place to have an officer occupy positions in state owned companies, mainly
those related to electric power, and power generation stations. The colonel demanded
who I was. The HR staff explained and he had a word with the administrative director. I
was unaware of all this.
A fortnight before the date of the congress, I got a phone call from the secretary
of the administrative director asking me: "What time do you leave for lunch?" I answered:
"12:15". She said: "I will tell you my name but don't say it aloud". I thought: "I've been
dismissed". She introduced herself: "I am the secretary of doctor so and so"- I didn't
know who he was - "and I want you to come here at the 8th floor so we can have lunch
together. Don't mention it to anyone".
When I got to the 8th floor I was very warmly greeted. The secretary became my
close friend. She spoke about the director and what they were planning "we are creating a
structure because doctor so and so and the administrative manager were delighted with
the invitation you got. We also were told that you participated from the Pan American
Games and that you play basketball. Everyone was thrilled because no employee here
does something similar.
I thought everything was very strange and at the beginning I was a little scared.
Later I relaxed. To sum it up, they created something that looked like a theater play in
order to have my boss relieve me. On Friday, the administrative manager, the secretary
and someone from HR called to my boss's office. It was around 5:00 pm. The only think I
knew was a hint from the secretary: "look, you can't laugh", I asked "why should I
laugh?" and she answered: "you will see".
When I arrived everyone praised me. My boss was looking at me angrily, and
they were saying all the time "Luis Felipe don't you think it is a honor to have an
employee as Isaura?" We became aware among other things that she plays basketball.
Are you aware of any employee from São Paulo or hinterlands that takes part in any
other competition? Isn't it fantastic? Especially she!"
That was when I found out that I couldn't laugh. He was very uncomfortable
when he heard: "We are here because we are so honored by the invitation she received
for this congress, don't you thing we can release her for the 3 days of the event?" he had
to sign my release for the three days. And two people from HR, among them a
psychologist also joined me in order to report to the directors how the meeting went.
When I went back to work on Thursday, my boss had someone place a closed
folder on my desk, asking I should not show it to anyone. I thought it would be my
dismissal letter. It was a letter signed by the CESP President with several praises. All
directors top down had also signed, inclusively my boss! From then on I found out that
he had thrown me to the arms of the president of the company. Next time he came to
punch my table, as he used to do for more than one year, I also punched the table and
screamed: "I already knew that you didn't want to work with a crippled person. From now
on if you scream, I will scream louder, and if you don't behave properly I will tell the
colonel that you put on your jacket and leave earlier with your friend here form the
department to give classes at the course at Rua Augusta. I know that everyone at the
department knows but no one has the courage to say something because you are very
angry. But I am no longer afraid of you. That was a terrible situation. We had a serious
conversation: "If you have any issues regarding my work, if I didn't do something, you
have the right to reprimand me, but as a boss you don't have to scream". After that we
became friends, and next Christmas he was my "secret friend".
All of a sudden, I became aware of the rights of the disabled. After all, the
Fraternity showed it to us. We discussed at length the situations we had to face. For
example, here at Rua Frei Caneca where I live, there were not curbside cutouts,
therefore it was not uncommon to break the wheel's axis. Even with my agility, often I fell
on the street going up or down a step, I even took pictures of curbside cutouts with a
friend; I called the press, fought and shouted until mayor Jânio Quadros made a few
cutouts, but he made those types of ramp that end into a step - worse than no ramp at
all. We started to fight and perceive how difficult it is to be a disabled person. We had
two options: give up or fight. We even made a protest walk at Avenida Paulista, where
we would fight for an accessible subway. Because at the time the authorities said that
few of us used the subway, therefore why adapt it? And we answered: Well, we are
here, every one of us paid for the ticket, which I believe is the fair thing to do, thus, we
have the right to complain".
At that time, a person with disabilities didn't have to vote. The doctors would
release us and the Regional Voting Court as well. However, we at the Fraternity made a
campaign so that everyone of us would have its voting document, inclusively Lourdes on
her stretcher; and we always heard the same excuses: Oh, but where I live it is difficult",
"there's a staircase". The first time Lourdes voted, there was a huge stairway at the
voting section. What we heard was: "You don't have to vote, you can go back home", to
what she answered: "I don't want to go back home, I want to vote!" There were no
electronic urns at the time. There was a discussion and we threatened we would call the
press, because there were many persons with disabilities there. It was when several
inspectors, from all political parties, came down with an urn to the place she was. It was
late afternoon and we've been there since the morning. She lying on a stretcher didn't
give up in order to give us an example, also disabled individuals.
She used to do a lot of these things. On the day we met, I was depressed, but I
was thinking about the things I was able to do, even being disabled: earn money with my
work, get a taxi using a wheelchair, go to a hospital to make a charitable gesture…
When I arrived I was received with I huge smile that perplexed me. As soon as I entered
her room she asked me to reach for a glass of water. It was a way she had devised to
show me that I also had limitations. A long time afterwards I told her: "Lourdes on the
day I met you wanted to finish me up, right?" and she answered as she always did: the
most important thing is life itself, it doesn't matter if you live it lying, sitting, seeing,
hearing. The most important thing is the gift of life" And that's true because one always
find a way to fight. After this experience I started therapy to try to understand my mother
and finally I understood her. I started to notice that at the time the situation was very
difficult for everyone. The family that had a disable member, whatever the disability was,
would be branded by the society.
At that time, I was dating an old colleague, a disabled person who lived outside
the city of São Paulo and whom I brought to the group. He suffered an accident and
became quadriplegic. As there has been no bone marrow section, today he walks with
crutches, and thank God he doesn't need orthesis. We ended our engagement with a
fight. I always liked to date, but until then I had always dated persons with disabilities. I
didn't imagine that a relationship with someone not disabled would be possible. And
there was also the trauma caused by my mother due to my urinary incontinence. She
would be always repeating that "things of the world are not for you" and this was always
very present in my mind. I thought: "How someone, who is not like me, would
understand my difficulties? "
It was at the time that this not disabled young man got in love with me, and I
would mock him all the time. He was a hyperbaric chamber technician, recently divorced
and had a daughter who lived in Rio. He was also seven years younger than me. Just for
a change this man comes to me, after he fell for Lourdes. He got in love with her and
joined the Fraternity.
When there was an event on weekends, he would volunteer to participate. Lourdes
used to tell me: "Isaura, Luis is in love with you!" I just laughed. I thought it was funny.
He called me at work, etc.
One day he approached me and said he would like to talk to me away from
Lourdes' room and asked: "Why all this resistance?" I know that you have a bone
marrow lesion and have urinary incontinence. I saw you medical record and know
everything you will say, and I am not interested in anything. I want you as a woman,
what do you say?" He was able to crush my defenses because my doctor at the
hyperbaric clinic was his brother in law and the two of them worked together.
Some women with disabilities, inclusively at the Fraternity said it was crazy,
because he was 25 and I was 31. When we had our first night together it was strange,
because I always heard from the hospital workers that sex for disabled persons was like
sucking a wrapped candy. Once I've been hospitalized at the Sara Kubistchek Hospital
in Brasília where a social worker invited me to take part in a group that discussed
sexuality. I was the only woman, and I don't know why they thought I had something to
add. In that group there was a physician from Bahia who suffered a bone marrow injury
after a car accident in a countryside road. He told us that the first thing he heard at the
hospital was: "You may as well give sex up, because you're no longer a man".
In this sense, we from the Fraternity were lucky to have Lourdes with us,
although she had lived in a hospital since she was 20, she had an incredible mind, and
sometimes we talked about sexuality in our talks. Many people were interested and the
youngsters wanted to know. So we decided to research. Even so I was afraid, because I
remembered what I had heard in Brasília. Luís simply erased this from my mind.
Because the truth is that the difficulty is in our minds and not in the place affected by the
accident. We stayed together until I had another family problem. My father got sick, was
hospitalized and the family hid the fact from me. This was my mother's and sister's idea
to punish me for the fact that I lived by myself, was independent and because I was
dating a not disabled person.
At that point I started to question myself: "is it worthwhile to stay with Luis?"
"What about my family". This was when I decided to end the relationship. I didn't want a
relationship in those circumstances. So I chose the family even knowing that the family
never chose me. Luis panicked. He had already told his family he was dating and older
woman with a disability. It was then I received a few phone calls at home and work. The
calls were from his family asking me if I was paying him to date me. To complicate the
situation my mother also had the same thought. So, everything conspired against our
relationship.
After I don't know how many years I was alone in Lourdes' room and the phone
rang. I took the call, but I have great difficulties in recognizing the voice of persons. It
was Luis. We haven't talked for five or six years but he recognized my voice. At that
moment, Lourdes entered the room. I took the phone from my ear and told her: "it's for
you". I took my things and was leaving when she grabbed my arm. She said I should
wait, because I didn't know what had happened in his life. Luis and I ended up living
together for eight or nine years. At that time, I worked for Celia Leão, who had been
elected state congresswoman. I worked with her until Lourdes passed away. Then I
decided to move away from São Paulo, and told everyone I would disappear from here.
To a meeting in São Paulo in honor of Lourdes, came some members of a
group I had created in Santa Bárbara do Oeste, at the time I was FCD's state
coordinator. These persons started to entice me saying "why don't you go to Santa
Bárbara?" Everything became very complicated for me and I went to the countryside. I
mentioned to Célia that I wanted a house with a dog and a garden in Santa Barbara and
couldn't stand anymore living in an apartment. Lourdes' family was there and I knew
them. Finally I was able to get a financed house financed and made the necessary
adaptations. In the first year in the new city, I had already decided to estrange myself
from Luis, because he was not who I wanted. It was not fair. For many years my heart
belonged to another person, a disabled man with whom I never had anything. I asked
Luis to go, I didn't want to stay with him.
There is other interesting point in this story. I came to the city married to a not
disabled person, and all of a sudden he went away. Although other disabled persons
lived on my street, the neighbors started to gossip: "How will she get away? She is
crippled, is tied to a wheelchair and he abandoned her…"For them I would not survive.
They didn't know that a person with disabilities can live alone. And I had already lived
alone for a long time. I had good physical resistance to the point that I could climb five
blocks from here to Paulista Avenue on a manual wheelchair. Besides I worked going up
and down steps until I retired. I am not sure but I think I lived in Santa Barbara do Oeste
for seven years.
I returned to São Paulo at the request of my father and surrogate daughter that
cried almost every day on the phone because I was away. She thought that if she would
have to help me, she wouldn't be able to do so, due to the distance. My little house there
was very cute. Unfortunately I sold it and couldn't buy even a studio here in the big city.
But it's OK. There are other good things as the fact that I am here today. I was
able to come back to the same building where I had lived and was very well received
by everyone. I found many old acquaintances. The janitor is the same after ten years
away from this building! There are also the neighbors, the owner of the fast food
restaurant, the owner of the drugstore on the corner of Augusta street. They are all the
same people, as well as many people living in the building. I looked around the
neighborhood but all other building have no access for persons with disabilities,
therefore I would have to go to a different neighborhood, when my acquaintances
found out, they even made a protest!
The owners of the restaurant, bakery and the people living in the building when
to the building administration to demand that should find me other apartment in that
building. They even told that I am part of the heritage of the building! Other said that I am
part of the heritage of the neighborhood. At the end of six months, the brother of the
building manager decided to buy an apartment to leave me here. Twenty days ago I
heard from him: "Don't worry I will not evict you. I heard your story and everyone likes
you very much. I don't want you to leave" So, I'm back.
Presently I have a series of health problems. I ruptured the tendon on both
shoulders as a result of driving my manual wheelchair up and downhill. Today I have to
use a motored wheelchair, but its maintenance is very expensive. I will be sixty soon and
I have several friends with this age. So, besides all our disabilities we have the age
related diseases! About two years ago I saw on a cover of Veja magazine a man with
Down Syndrome who was over 50 and the headline said: "Who is going to take care of
us?" I am not aware if the authorities and the society have this in mind. Medicine had
such an evolution that Down patients are becoming elderly. The same happened to
people with other disabilities. I, who would die in six months or a year, am already 60!
And there are now diseases such as the post poliomyelitis syndrome, which has been
recently discovered here in Brazil.
So who will take care of the elderly disabled? I have a father who is 92 years
old in a wheelchair! My sister is 64! We have not been prepared to live to old age. Even
the physicians were not trained for this reality! Many specialists in my medical insurance
program such as vascular, gynecologists, urologists and even orthopedists don't have a
clue of how to deal with us! I have a severe vascular problem due to my disability. Today
it is much worse. So who will take care, and how?
These things are not taken into account when we retire. My retirement is not a
minimum wage because I worked at a state owned company, which guaranteed also the
medical plan of the company. Until 1972, the state owned companies retired people with
full compensation pay. As I joined the company in 1978, I receive only part of the
amount. Even so, I have expenses related to the disabilities that are expensive: diapers,
urinary probes, motorized wheelchair - not to mention taxis, food and rent!
I would like to reinforce this issue that I consider as being fundamental: "Who is
going to take care of us? I don't mean me, Isaura, but the elderly disabled. Because
even in retirement homes, they are not prepared to deal with persons with disabilities. I
know that today most elderly are left in clinics or with other caregivers. Not always they
are well cared for. So everyone should think about it. I am sure that if Lourdes would be
here, she would have thought something about this issue of who is going to take care of
us"
Really today we advanced a lot in terms of adaptation. I took part in this fight
and I am proud of being part of this history. Often we went through terrible situations.
Just to remind you, the International Year of Persons with Disabilities took place during
the military regime! At that time nobody wanted to know how many disabled there were,
because if there was a counting, someone would have to take some measure. I don’t
believe many people are aware of the fact that the Brazilian government didn't receive
the representative of the World Health Organization (WHO) at that time. He stayed at the
home of a disabled person in São Paulo, and at other disabled person in Rio de Janeiro.
This was our group, made from different movements that took him to the events.
So we depended from the statistics of the WHO for developing and
underdeveloped countries. At the same time they made us believe that we were part of
developing countries! We had - and I believe we still have - our pockets of poverty. I
travelled in the hinterlands of Mato Grosso do Sul and the Northeast and I saw the lack
of development in those regions. There are many places that may be called fifth world,
with disabled persons being undernourished!
I went to places where members of the third or fourth generation of people
plagued by famine stop walking at 5, 6 years of age. I met a young man in the
hinterlands of Maranhão who stopped walking at 17, due to malnutrition! Therefore I
believe that - even when we speak of things like the internet and that everything is
wonderful - things haven't changed much in the interior of the country.
Going back to the International Year, there was a great movement of people and
we were involved in different meetings, lectures and even fights. All of a sudden, in
Brasília, we created a committee to invade the Government Palace. On that day the
Presidential Guards didn't know if they should hold their weapons of help us push the
wheelchairs. It was comical, really very amusing. We wanted to make a presence.
Besides there was a differentiation between Movement and the entity, because
the entities for people with disabilities such as APAE (Association of Parents and Friend
of the Disabled) didn't like to talk to the disabled. The view point of the members of these
organizations was that due to the fact they were technicians, they knew everything about
the issue. I remember a physician, director of AACD (deveria ser APAE) who had been
invited for a talk with two or three persons with disabilities at a round table. He refused,
he didn't want to participate
At the same time we had communication difficulties with those who had hearing
impairments, provided when we found someone who knew sign language. At the same
time the sight impaired thought that what was being said to those with hearing
impairment was different of what was being said during the congress of the International
Year in Brasília. Romeu remembers this very well. There was a war going on. Besides,
we, the physically disabled had to have some adaptations that they didn't need. They
could not understand this because they lived in a different world. We wanted to unite
everyone. We believed that this should be the fight of all those who one way or other
was excluded.
There were two participants of the Fraternity that lived at AACD. They had
brain palsy and great motor difficulties but brilliant minds. Their names were Serginho
and Zé Roberto. They had a very severe spastic palsy. One of them had a fantastic
mind! As they spoke with difficulty, we didn't understand them, mainly what Serginho
said. So we asked him to repeat and everyone was silent. Because we really wanted to
hear was he was saying. This was a principle at the fraternity: give voice to those who
never had a voice.
At one time, Lourdes has been invited to go to Buenos Aires to take part from
a South American Fraternity meeting. Precisely at this time she had a health problem
and had to undergo an emergency surgery to remove a bladder stone; therefore Isaura
went to Argentina as a representative of the Brazilian FCD. That country was in
turmoil, for it had lost the Falklands war three or four months before. People had
difficulty of going out on streets. The Fraternity coordinator had polio all over her body
and used a ventilator. She was a fantastic girl! There was also the spiritual coordinator
- a priest. That group had a different view from our about the issue of disability. I
remember that at the meetings they discussed if disability was an award or a
punishment. For us, Brazilians, that was crazy! We saw those people all looking like
saints, disabled looking like poor souls and we had a different viewpoint.
Everything was very strange for us. For instance, here In Brazil, wherever we
would go to participate in events, we always would go out for a walk. In Argentina we
stayed at a place that looked like a nunnery, there were no windows overlooking the
street. In the dorm, beds were separated by screens. Some participating girls had to
return home every evening. Father Geraldo went with us. The people in Argentina
understood that he was the general priest of the Jesuits, therefore nobody complained
when he ripped the door and made a ramp so that the wheelchairs could go up the stairs
to the bathroom. The Brazilians discussed among themselves the situation of the
Argentineans - with longer experience with the Fraternity and diseases such as
poliomyelitis - they had more advanced treatments and physiotherapy, even so they had
backwards viewpoints.
There were many other trips and all of them had their funny moments. Lourdes
also went through many difficulties in the trips she made with the FCD people in that
Kombi car. Once after crossing a region, the rain started to pour and they couldn't go
back, so they all had to sleep in the van. Many said she should write a book on her life
as many disabled persons do.
She would say: "Whoever wants to write about my life, write, because I am
going to live my life".
Since its financial problems started, Umberto Primo Hospital has been closed
and reopened several times. When it closed definitively, Lourdes was ill and some
employees kept her there. A restaurant would send food and the nurses took turns to
take care of her and sleep with her. When the disease got worse, the hospitals is São
Paulo started a dispute on the issue of who would receive her. Everyone wanted
Lourdes. The State government wanted her to go to the Clinics Hospital. She said:
"Isaura, I don't want to leave this place, I've stayed 50 years in this neighborhood".
Finally she was transferred to Santa Catarina Hospital, where she passed away. Most
people are not aware of the fact that Celia paid a person to sleep with her at the hospital
- a nurse from Umberto Primo hospital, unfortunately for just a few nights, because she
passed away soon after the transfer.
I couldn't visit her when she became seriously ill. This fact caused me much
despair, but I just couldn't… I stayed at the door. When the cancer got worse and she
was delirious, she started to fight me through the phone. I was very upset and at the
same time I had no idea of what was going on. It was when I was told that her health
was deteriorating and that I should pay her a visit. In her last day, I was in shock. I didn't
want to get close, not even till the door of her room. I couldn't make myself talk to her,
because that was not the Lourdes I've known. Her face and body had changed so
dramatically.
When she became ill, the former owner of Kopenhagen chocolates paid her a
visit, he joked saying he was a lawyer of a secret friend of Lourdes. By chance I found
out who he was because a friend of my brother worked at Kopenhagen offices. He didn't
arrive by car with a chauffeur. He came by taxi, came to the room and signed a blank
check. He wanted Lourdes to tell him whatever she needed, for whoever needed,
anywhere in Brazil, for a disabled person, child, airline tickets, treatments, whatever.
When the disease got worse he said: "If I could, I would buy the life of this woman".
We also took part from movements of other minorities related to the Catholic
Church - prostitutes, native Brazilians, landless persons. I believe that at that time these
movements were more sincere and less of a mess you see nowadays. Lourdes didn't
take care only of persons with disabilities; she took care of all those around her. As she
was befriended with the hospital staff, they would take children under treatment for
cancer to chat with "Grandma Lourdes". When the children went home, she would phone
them and joked with them through the phone. These were her "grandchildren". I would
tease her saying "Soon you'll have great grandchildren". We would grab her nightgown
and say "when you become a saint, we will tear your nightgowns into small pieces and
sell it as the saint's relics". When she died, Celia and I cried hard and despaired!
The neighborhood newspaper, an Italian newspaper, wanted me to write
something about Lourdes because she lived in the region. I always tell a journalist who
lives in the next building that I don't like to write, but I like to talk, to tell stories about
Lourdes. Therefore, I am very happy for the opportunity of taking part in this chat and
talk about the fantastic creature who was my friend since 1978.
Unfortunately I will not be alive to see the beatification of Lourdes. I gave my
testimonial. In my case the opportunity of being with her was an enormous gift. Lourdes
changed me completely. I owe her 99.9% of the Isaura I am today. I have to feel
privileged. I thank God every day for having met Lourdes. This has been my life within
the Fraternity.
Image. Document.
NATIONAL CONCENTRATION DAY
1981 – Christian Fraternity for the Sick and Disabled
The Christian Fraternity for the Sick and Disabled promotes this concentration at an international scope (5 continents). The
concentration aims to generate awareness, i.e., transmit to the population the fact that persons with disabilities (physical, mental,
sensorial,…) are full citizens and participants of the life the society, have the right to transportation, education, work, rehabilitation
and leisure, such rights which are fundamental to the human being, disabled or not. The UN (United Nations) insisted with member
countries that 1981 should be the International year of Persons with Disabilities, with the theme: “FULL PARTICIPATION AND
EQUALITY”.
Suffering from a physical, sensorial or mental limitation, the person with disability is not limited from being a normal person, that can
work, study, travel, marry, finally live a life.
SOME BACKGROUND
FCD is an ecumenical international movement started in 1942 in the city of Verdun, France by Monsignor Henry François. He, with
50 disabled persons, found out that the disabilities had not deprived them from the values and abilities, and with all their limitations,
they were alive and their lives should be lived with intensity.
In Brazil, the movement started in 1971, in Rio Grande do Sul. Presently we have more than 70 centers in different states.
FCD GOALS
It fights for the total development of the sick and disabled, in human and spiritual realms.
It contributes so that we, the disabled, integrate ourselves with other disabled persons, with the society, as we are also the society.
Presently our work is extended to patients with Hansen’s disease (lepers). Don’t avoid them, they are people just as we are, who can
live normally in the society, for Hanseniasis is a curable disease and they don’t have to be confined in leprosariums. Visit them.
We believe in the fight of the disabled, it is the same fight of the blacks, native Brazilians, workers, etc., both marginalized. We hope
that united and aware, we will be able to re-conquer our place and our rights for a respectable life within the society.
We invite you, disabled or not, to participate and help in the construction of a better, fairer and more human world.
Entities that support the Fraternity:
ADEVA – Association of the Visually Impaired and their Friends
Paraplegics Club of São Paulo
ARPDB – Association for the Professional Rehabilitation of the Visually Impaired
ABRADEF – Brazilian Association of the Physically Disabled
SODEVIBRA – Brazilian Society of the Visually Impaired
NID – Center for the Integration of the Disabled
QUINTA RODA – Fifth Wheel
MDPD – Movement for the Rights of the Disabled
UNADEF – National Union of the Physically Disabled
AIDE – Association for the Integration of the Disabled
More Information:
National Team : Maria de Lourdes Guarda (Coordinator) Phone: 284-5493
Regional Team: Isaura Helena Pozzatti (Coordinator) Phone: 251-3433
Digital Collection : Memorial da Inclusão
Donation: Romeu Sassaki.
.
Image: Two pages document.
CHRISTIAN FRATERNITY FOR THE SICK AND DISABLED 09/16/1980
III PREPARATORY MEETING FOR THE “I NATIONAL MEETING OF PERSONS WITH DISABILITIES”
REPORT OF THE “LEGISLATION”SUB-GROUP
Date: August 10, 1980
Stead: Ginásio do DEFE, São Paulo/SP.
Participants: Leila (AID/SP); Vinícius (ABRADEF/SP); Ana Crespo (NID/SP); Carlos Lelis (AID/SP); e, Messias (FCD/PE).
Issues to be discussed: How to act during the International Year of Disabled persons, in what concerns legislation
The work has not been developed as the issue demanded due to lack of time. Starting with the suggestions offered by the Panel
(extracted from the working plan suggested by the UN), we tried to see what we could debate within the available time that would
result in concrete suggestions for the improvement of the Brazilian legislation, at least ad domestic level.
According to the opinion of the sub-group, the problems that demand important changes in the legislation, or even the beginning of an
inexistent legislation are: education/professionalization for the disabled; improvement of transportation and accessibility conditions;
introduction of rules in municipal civil work codes, aiming the elimination of architectural barriers; updating of the social security
legislation, regarding medical care/rehabilitation as well as retirement regimens; incentives to be given to the plants that manufacture
equipment for persons with disabilities aiming the improvement of the quality of domestic products, as well as the introduction of
Brazilian technologies.
On the issues of “INAMPS retirement policies” as well as “incentives to plants that manufacture equipment for persons with
disabilities” we formulated a draft of a bill. It is not a ready work for we need a more in depth study of the focused problems, however,
in general lines we agreed as follows:
– continues on next page
Image:. Continuation of the previous document.
- INAMPS retirement: “assured to the insured person with disability the possibility of getting a new job when rehabilitation allows,
with the right of returning to “retirement due to incapacitating bodily disability” in the event the person losses the job”; and
- incentives for the plants that manufacture equipment for the disabled: “grant incentives to domestic industries that manufacture
equipment for persons with disabilities, (decrease in taxation of Industrialized Products Tax) that provide evidence that they are really
manufacturing products of superior or equivalent quality to those manufactured by the best international brands..,”// “also grant equal
incentives to the mentioned factories that manufacture products developed with their own technology and of real interest for persons
with disabilities…”// “…the verification of the quality of the products and/or innovation of its technology would be at the judgment of
a government committee made up also by a representative of the highest entity of persons with disabilities.
We also agreed as to the need of creating a committee in charge of collecting suggestions to change the legislation, prepare drafts of
bills to be sent to the Legislative. This would be a more or less permanent committee; it would also try to get legislation from other
countries (many of us already have this material) and adapt it to the Brazilian reality.
Recife-PE, September 16, 1980.
Signature of Messias Tavares de Souza,
Sub-group Coordinator
Digital Collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspaper: O Estado de S. Paulo, December 07, 1980.
Persons with disabilities approve actions plans for 1981
The program-letter and the members of the coordination of the Movement for the Rights of Persons with Disabilities have been
approved at the Congress by a group of persons with disabilities that represents round 15 different entities and who intend to act on
behalf of the 2.2 million persons with disabilities who live in the state of São Paulo. The basic goal of the movement is a political
action creating a kind of lobby that will help to overcome the huge load of exclusion practically imposed to the disabled in Brazil.
The coordinators of the Movement are: engineer Cândido Pinto de Melo, professor José Evaldo de Melo Doin, lawyer Vinicius Gaspar
Viana de Andrade, lawyer Leila Bernarba Jorge, psychologist Luís Celso Marcondes de Moura, rehabilitation counselor Romeu
Kazumi Sassaki e Maria de Lourdes Guarda. During yesterday’s meeting it was decided that several symposia will be held in 1981,
the year chosen by the UN as the International Year of Persons with Disabilities. These meetings will be crowned with a large
congress where issues such as architectural barriers, health, rehabilitation, work and professionalization for the disabled will be
discussed.
For the coordinators of the MPDP, all persons with disabilities face prejudices and barriers in their lives, and this makes social
integration difficult. According to the program letter, the society as a whole has a wrong notion that persons with disabilities are
inferior beings in what concerns professional skills and respectability, being unable to take their own decisions, which leads to the
existence of long stay institutions where persons with disabilities and the elderly deteriorate becoming solitary, humiliated and not
getting assistance until they die.
In order to avoid this situation, the persons with disabilities stated that their basic principles are the fact that “human dignity is intrinsic
and essential, with no needs of pre-requisites”, “the access to life, work, freedom, safety and full individual achievement is not a gift
or a concession, but an inalienable right of every human being”, “the State has as intrinsic duty to provide the community with the
instruments so that everyone may reach its full potential”.
Inscription: O Estado de S.Paulo, Deember 7, 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspaper Folha de S. Paulo, July 22,1980.
Problems regarding persons with disabilities are being discussed in SP.
The clipping contains two black and white pictures. 1. Many people sitting and standing, among them Maria de Loudes Guarda in a
stretcher, hold posters. Inscription: at the audience, many posters with the main claims. Picture by Adalberto Marques;
2. Panel is being held with participants and a full room of attendants. Inscription: Persons with disabilities discuss their problems until
tomorrow at PUC. Picture by Luis Parra.
The 2nd Brazilian Congress on Social Re-integration promoted by the Brazilian College of Health Administrators started yesterday at
the Pontifical Catholic University (PUC) with the aim of discussing the importance of the participation of persons with disabilities in
labor, education, leisure and all activities of the society, without any kind of paternalistic attitudes. According to UN data there are
about 10 million persons with disabilities in Brazil. The congress ends tomorrow afternoon.
The meeting was opened by a representative of congressman Tales Ramalho – also a person with disability – author of the
constitutional amendment that guaranteed to the disabled the same rights of every citizen. The congressman did not appear because he
is sick.
MARGINALIZED
One of the issues discussed on the first day were the difficulties imposed to the disabled person to participate from the society.
According to Romeu Sassaki, counselor of the Center for the Development of Resources for Social Integration, the disabled in Brazil
are marginalized from work, education and leisure even by rehabilitation centers and from companies that manufacture special devices
for the disabled.
There is the “architectural barrier” explains Romeu – that prevents persons with disabilities to reach certain places”. He mentioned as
examples schools with staircases, narrow corridors, no lifts and buses for mass transportation that do not take the disabled into
account. “The society simply ignores the existence of the disabled”, reminds us Romeu.
LAW SUPPORT
In October 1978, the Nation’s Congress enacted a constitutional amendment from congressman Tales Ramalho that prohibits the
discrimination of the disabled and assures them access to all fields of activity. However, Romeu Sassaki acknowledges that the mere
existence of the amendment does not solve the problems. “The disabled have to mobilize themselves in order to put pressure on states
and municipalities so these entities will create laws that guarantee work and a life as that of the not disabled”, stated Sassaki.
He says that there are already organized movements in São Paulo, Porto Alegre, Rio de Janeiro, Curitiba, Salvador, Brasília, Recife
and Ourinhos, and that very soon there might be a National Federation of the Associations of Persons with Disabilities.
NO PATERNALISM
The chairman of the Brazilian College of Health Administrators, João Catarim Mesomo, explains that the aim of the congress is to
“make the authorities aware of the problems of those physically disabled, in order to have, at mid-term, a different mentality regarding
the disabled persons, mainly regarding paternalism, that only suffocates instead of freeing”.
The persons with disabilities also claimed that the companies that manufacture and sell products for the disabled such as wheelchairs
should make surveys with the consumers in order to improve the quality of their products.
TWO HUNDRED PERSONS PROTEST AT SÉ SQUARE
About 200 persons with disabilities carried out yesterday a public manifestation at the Sé Square in order to protest against the
discriminations they suffer and which keep them at the margin of the society, leaving them only alternatives such as sub-employment.
“We are not claiming privileges, but the means to allow us to carry out the common rights of all human beings. How may a disabled
person exercise the right to vote, if such person is prevented from voting because the allotted voting section has stairs? How can a
disabled person use mass transportation, if the steps of the buses are too high?” These are some of the items mentioned in an open
letter, distributed to the general population by the Center for Integration of the Disabled (NID) that participated from the public act
summoned by the Brazilian Association of Persons with Disabilities.
With banners and posters claiming for equal treatment, the disabled protested against the “persecution on part of municipality
inspectors towards street vendors” and demanded the fulfillment of the legislation that acknowledges the rights of the physically
disabled.
“There is a law that binds companies to hire between 3 to 5% of physical disabled persons among their employees, but this is not
taking place, as well as the law that regulated the work of the lottery tickets sellers is also disregarded, for the person with disability
has to buy these tickets at the black market for the lottery stores monopolize the marketing of lottery tickets” said Davi Pinto Bastos
chairman of the Brazilian Association of Persons with Disabilities.
Image. Continuation...
CLAIMS
People with disabilities claim for lower steps in buses, for “if for not physically disabled persons it is difficult to climb the high steps,
to a person wearing orthesis or mechanical limbs, this banal act becomes an almost impossible task”, as stated in the open letter
distributed to the general population.
Persons with physical disabilities also claim for the installation of automatic ramps in buses to enable wheelchair access, the reduction
of speed limits that “jeopardize the safety of all passengers and much more the safety of the disabled”.
Regarding taxis, the physically disabled claim for the withdrawal of front seats of two door taxis, in order to facilitate the transport of
wheelchairs and to trains taxi drivers who presently refuse to carry the physically disabled for they do not understand the difficulties
these persons face.
The physically disabled complain about the state of disrepair of sidewalks which makes very difficult the circulation of wheel chairs,
demand zebra crosswalks at all crossings and longer traffic light times to allow disabled, elderly and children to cross streets safely.
Inscription: Newspaper Folha de S.Paulo, July 22, 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Newspaper Folha de S. Paulo, March 15, 1981.
Declarations of Rights open the Year of the Persons with Disabilities
About 400 persons with physical disabilities participated yesterday at the Town hall from the opening ceremony of the International
Year of Persons with Disabilities, that will continue with the organization of round tables and meetings in different neighborhoods and
with unions and other class entities.
Odete Cláudio Machado, a blind person, read a Braille publication on the Declaration of Rights of Persons with Disabilities, opening
the ceremony attended by the General Secretary of CNBB, Bishop Luciano Mendes de Almeida, Congressman Horácio Ortiz,
Corregidor Judge of Prisons, Renato Tali and representatives of different entities.
The Movement for the Rights of Persons with Disabilities (MDPD) that organized the ceremony, programmed for the remainder of the
year a series of activities aiming to “make the society aware of the real image of the person with disability as a human being; defend
the rights of the disabled; eliminate environmental barriers; update the legislation that supports the disabled; denounce cases of
exploitation and humiliation; creation of a national policy that establishes minimum standards of quality and quantity
of programs and services in the fields of education and rehabilitations of persons with disabilities that continue to be overlooked;
incentive the creation of centers for persons with disabilities in neighborhoods and cities; obtain visibility with constituted powers in
order to defend the interests of persons with disabilities”
Cândido Pinto de Mello and José Evaldo de Mello Doin, two of the eight MPDP coordinators, stressed that the organization has a
“political character not belonging to any party, is active for two years and is an instrument of pressure of persons with disabilities,
rejecting any assistencialistic form of treatment”.
DIFFICULTIES
Most attendants had to overcome great hurdles to reach to the plenary room where the solemn act took place. For those who use
crutches, the access ramp to the entry hall represented a risk of fall; those in wheelchairs were prevented from climbing the step at the
entry of the hall. Almost all needed the help of relatives or friends to reach the meeting place.
Ms. Maria de Lourdes Guarda, who due to a disease that causes the calcification of part of her spine, lives for 34 years on a bed with
wheels, had to be carried by four persons. She participates from assistance entities for about ten years and believes that “the best
results that may be achieved with the Internal Year for Persons with Disabilities is an awareness of the general public and the
authorities in the sense that we have the ability to produce, but the right conditions to enable us to produce have yet to be created”
Inscription: Newspaper Folha de S. Paulo, March 15,1981.
Digital Collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspaper Shopping News, January 4, 1981.
Headline: The brave and engaged Maria de Lourdes.
Black and white picture of Maria de Lourdes Guarda smiling.
For 33 years, Maria de Lourdes Guarda lives bedridden in room 259 of Matarazzo Hospital. Victim of a spine disease since she was 20
years old, she was submitted to several surgeries until she convinced herself she would not be able to walk anymore. But she did not
give up life. Today, at 53, Maria de Lourdes is in charge of the São Paulo State Regional Center of the Christian Fraternity for the Sick
and Physically Disabled, she constantly travels on a stretcher to the countryside of the state helping to organize new centers of the
society (next month she will be at São Bernardo do Campo) and definitely cannot be considered an invalid.
- I don’t see any reason why I should be idle. I can transmit the experience that I lived until today to those who are starting to work
now.
Extroverted, her blue eyes shine when she speaks about her work. Among folders, books, agendas and notations, Maria de Lourdes
organizes her programs with absolute efficiency. She said that in the beginning it was difficult to accept the situation. “But grace to
my faith, I assumed the responsibility to live the best I could”. To make her living she started to do handicrafts. In 1974, she was
invited for a meeting of persons with disabilities at Colégio São Luís, and she found out that there were many persons unaware of their
potential and thus lived in a bitter mood. “I then proposed to help in a different way. I left handicrafts aside and engaged in the fight to
reintegrate persons with disabilities into the society”.
Inscription: Newspaper Shopping News, January 4, 1981.
Digital Collection from Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Color picture. Maria de Lordes Guarda surrounded by peole. A man holds a tape recorder.
Inscription: Maria de Lourdes Guarda.
Meeting of Coalition Delegates, July 1982, when was created the National Day of Fight - Vitória/ES.
Digital Collection: Memorial da Inclusão.
Donation: Claudio Vereza.
Image. Color picture. Maria de Lourdes Guarda poses for a Picture with five smiling women.
Inscription: Maria de Lourdes Guarda, Isaura Pozzatti e and friends.
Digital Collection: Memorial da Inclusão.
Donation: Sister Leonor Guarda.
José Roberto Amorim
Image: Color Picture of José Roberto Amorim.
“In 1981, during the International Year for persons with Disabilities I got acquainted with the Christian Fraternity for the
Sick and Disabled (FCD), that today is known as Christian Fraternity for Persons with Disabilities”
M
y name is José Roberto de Amorim. I was born on February 28, 1953 in the same
house where I live today, and God willing will continue to live in the neighborhood of
Artur Alvim, in the eastern side of the city of São Paulo.
My father worked from Monday to Saturday. He worked in the business sector,
was a doorman, he would do anything. He worked at Coca-Cola and his last job was at
Clipper Magazine doing carpentry work. He was not real carpenter, but he had his way. He
had many social worries. He wanted things to happen, he wanted everyone to have
access to food, decent clothing, and good transportation, but we were a poor family, so
things were not the way he would like them to be. I believe my political ideas came from
him.
I remember that once my father told a very interesting story. The type of story
you keep in your heart. Close to Christmas he has working in a shop. He wasn't paid the
13th salary nor the marker until Christmas Eve - but he wanted to make a slightly better
lunch or dinner for his children on that day. He went to his boss and said "Look if the
marker is not paid tomorrow and I cannot buy a chicken for my children, I may come
here and make something stupid. I may even kill you, for I'll kill for my children". The
payment was made next day. He thanked God because his children would be able to
"suck a chicken bone", as he used to say.
This is how my father acted. He was a very fair person who had this "social"
side to him. He was very active in the neighborhood. In order to have electric power, he
gathered his friends and fought for it; it was the same for piped water and asphalt - until
the day he got disappointed. At one of the neighborhood meetings, he saw the
attendants put a bottle of liquor on the table, and he said: "Wait a moment, are we
speaking of neighborhood problems or are we going to drink? I am not against hard
liquor, but after the meeting, at the bar, not here", then he turned his back, went away
and never came back. This story shows you a little how was my father/
He would sit at my side and we talked a lot about politics. Sometimes I didn't
understand what he was saying but I paid much attention to what he said. He told me I
was his companion, because as I couldn't get out, I would sit by him and listen. At the
time I thought it was boring, for as a teenager I had other worries. Now, I understand
what he meant, today I am aware that I learned a great deal listening. Those
conversations were of great importance - ideas that one way or other I practiced in my
life. It was great growing up with these values my father transmitted.
My parents had five children. My father and two brothers already passed away.
Today we are three siblings - two men and a woman, and my mother who will turn 92
now in 2010. My parents had a very good family planning - they wanted a child every
three years. This is the age difference between me and my siblings. But the difference
between me and my younger sister is of six years. Later I was told why. After my birth,
they still wanted a girl, but as was born disabled, they wanted to double the time
difference because they were afraid of disability, at that time there was not much
information of what disability was. People asked themselves who was guilty and who
wasn't. Would it be something related to blood? Or would it be God's punishment.
When I was born I didn't have all the assistance my daughter had. There is an
important detail, who made my mother's delivery was my grandmother. Until the day my
parents realized that my disability was a fatality, my mother was looking for explanations.
She said she was startled when a dog barked close to her while she was pregnant. Until
today we speak about it, and she will say "but it was not my mother's fault". So we avoid
touching the subject in order not to annoy her. We know it was not anyone's fault. It just
happened.
My parents found out there was something wrong with me when at the usual age
children sat, I wouldn't sit. The doctor's asked my mother to give me vitamins, but it didn't
help, so they decided to gather a council of doctors to understand what was happening to
me. At that time, they didn't have a good comprehension of what was cerebral palsy. When
the doctor passed the diagnosis that I would never walk, my father was very afraid and upset.
Before me they had had three children and nothing wrong had happened. The doctors
suggested I should go to AACD, they told that I would be able to learn how to read and have
some physical development. They sent me.
I arrived at AACD in 1959, when I was 6 years old. I had access to the
rehabilitation they offered at the time. They were just starting and didn't have the
resources they had nowadays. We were lodged in three rented houses in the Campos
Elíseos region. One of the houses was used just for physiotherapy. I don't know who
paid the rentals. There was not adaptation, the houses had stairs, but as we were small
children it was easy for the employees to carry us in their arms. AACD was very
important in my life. First, because of the rehabilitation program, which perhaps was the
best available at that time, second due to the opportunity to learn how to read and write
which is fundamental. For me at six, everything was cool, there were teachers and
physiotherapy. The only nasty thing is that I saw my parents only on the second Sunday
of each month, but we ended up getting used to it.
My mother says that after I went to AACD I started to open my hands, which were
totally closed before. She said that even my speaking was incomprehensible. Today I
even speak on the radio. But when people listen to me, I still think if my voice is terrible,
although it is more understandable than before. I believe that the speech therapy helped
the development of my speech, but also a decisive point was that as soon as I left the
Association I joined the Christian Fraternity for Disabled Persons, and during the meetings
I had to talk - either you spoke or you didn't participate - so I believe that at the Fraternity I
naturally perfected my speech.
There were two different steps in my stay at AACD. Between 1959 and 1960, we
stayed at those rented houses. We know very well the cook and the physiotherapist who
sometimes played with us in the backyard, there was no formal posture like "I'm the
physiotherapist, I have my office and an allotted time to take care of your case", even our
driver was a nice guy, when he was not driving, he would push our wheelchair around.
Laundry was at the ground floor, and we always used to chat with the laundry
women, it was a nice way to live. In 1961, the present building of AACD was built in the
Ibirapuera region. We moved in, and from that moment on we started to live a life as
Institutionalized persons, with the new rules of the association we became estranged from
those people we had learned to love.
One thing I remember clearly is the fact that every time we had a meal, some had
to help me eat. I always liked to talk a lot; therefore I took long time to eat. Everyone
finished eating and I was still there chatting - until one day the person in charge of the
kitchen said: "tomorrow I will feed you", I answered "OK". She came and as I wasn't so
familiarized with her, I ate quicker than usually. I think I never ate so quickly in my life, but
with this they wanted to show me that I couldn't speak to the caretakers while I ate. This
hurt very much, because I felt excluded. I could no longer chat with people. I had to eat
quickly. All of a sudden I could only chat with friends, as if the employees were not people
as well. I was very worried for some time, and then I let it go. I only criticized this model of
rehabilitation much later, as an adult at FCD.
At that time, the Association said that there would be a follow-up when we left
the institution, but it didn't happen. I left in 1966 with 13 or 14 years, the social worker
that she would see me at home every year or every six month.
Until today no one from AACD came to see me at home and I didn't receive a
single phone call from them. I went back several times to see the doctor. Never
someone asked details of how I was physically or what were my thoughts; coincidentally
this year I was there to get information about some surgeries and heard: "Zé, you
haven't been here once in ten years ", I almost said, "well, its 40 years that you don't
show up at my house". But being realistic at that time we were 50 children, today they
see some 600 children daily, but is this not their role? They simply cannot follow-up so
many people; therefore I fight for a decentralized policy of health and rehabilitation
offered by the city and not only by institutions such as AACD.
When they sent me home they said: "we can't do much more than what we
have already done". I felt strange because I didn't know what to do with my life from then
on. I didn't hear anything positive like: "Look, we are going to follow you up whenever
you need us. If you need a school, we will fight together". No, they almost said: "we did
what we could, go home and cope with it yourself", they just didn't say it because that
would be very rude, but the message was "cope with it yourself", it became clear that
from then on, only God would help me. Just to conclude, the association gave the
rehabilitation but I don't miss at all the time I spent there.
My father answered them: "He is my son, and I will take him home". My parents
didn't receive any guidance about what they should do, what was the best way to deal with
me and my disability. We had only the structure of a modest home, we had a black & white
TV set. I spent the whole day with my mother, while other kids my age were working or
studying. I used to think: "why am I here in this world?" At that time there was nothing in
the neighborhood for youngsters 14 to 16 years old. Anyway, I wouldn't be able to leave
the house because I didn't have a wheelchair, I had only a wooden chair my father had
made; also the streets were unpaved. Nowadays, using a wheelchair on asphalt is
complicated, using it on an unpaved street was terrible. When it rained I couldn't get even
to the front gate. When I looked to the left of the house, I saw a forest, where today are the
COHAB (Metropolitan Housing Company) buildings, to the right was the end of the street.
So, I didn't even have the desire to go out, and it was obvious that I didn't have the means
to go out.
In 1981, during the International Year of Persons with Disabilities, I became
acquainted with the FCD. When I had to introduce myself during one of the first
meetings, I said that I watched many movies on my B&W TV set, and that was it,
because the doctor had told my father that I would not improve any further and uttered
the fatidic sentence: he is not apt to do anything. The persons at FCD said: "he lied to
you - you can do whatever you want". Since then, I don't stay at home anymore. I am
always attending meetings, representing FCD somewhere. In the past we used to have a
Sunday lunch at home, sometimes even a barbecue, but now I seldom have lunch at
home on Sundays. My father used to say: "Gee, Zé before this FCD you had lunch with
us, now you don't even show up!", but the point is that I embraced this movement with
much affection, and it couldn't be different, for they changed my life when they said: "you
can do anything, you may not even do what I do, exactly as I do it, but you'll do the same
thing your way".
The people from the Fraternity showed me that I didn't have to follow exactly
what AACD preached: "to make the transfer from the wheelchair to the bed, you have to
lift the left foot and through your butt to the left", my friends said: "you don't have to do i
that way, do it your way, throw yourself on the bed", beforehand my father used to take
in his arms to place me in bed or in the bathing chair. Once the fell from the roof and was
in a cast for some time, he was worried because he wouldn't be able to help in his
situation, he said "what are we going to do now my son, I will not be able to put you in
bed "I answered" leave it to me" and jumped from the chair into the bed. Next day my
mother only gave me her hand and I went back to the chair. This notion of autonomy I
owe to FCD not to AACD.
The Fraternity showed me that I could do things my way, and that I was not
limited to the guidelines of the physiotherapist from the association. It was then that I
started to believe in myself and started my political engagement. Although I have always
lived in this region, I was acquainted with people from this neighborhood; the reason is
because when I started my political and social engagement I worked much more in the
Itaquera region, where the Fraternity had a very strong presence, although it had its
arms spread all over the city.
During the work related to the 1988 Constitution, FCD worked together with the
MDPD (Movement for the Rights of Persons with Disabilities), with NID (Center for the
Integration of the Disabled) and all those movements and entities there in existence in
order to define what we would send to Brasília in terms of legal claims. There was a
national mobilization at local level and the people in São Paulo where very much engaged
and active for they knew how important it was to discuss and put in a white paper the
points to be claimed.
It was during that time that time that I felt the need to go back to school. Things
were happening and I had finished only the 4th grade. I wanted to learn in order to be able
to cooperate more, but due to my disability and my age - I was 44 at the time, regular
schools wouldn't take me. I only overcame this barrier when I was able to get In touch with
someone at the Secretariat of Education, with whom we had worked at the Municipal
Council for Persons with Disabilities, and she told me that she had spoken to someone at
the Secretariat and the answer was that a school close to my home would accept me. I
went to the school and they gave me the opportunity to go back to school. I grabbed the
opportunity with both hands and today I have completed high school. I presented all the
documents and they asked to take a test in order to evaluate my level of learning. After
passing the test, a teacher asked me: and now, what will we do with you? and I answered,
from now on, you'll have to teach me!
There was one important detail: the Secretariat had no policy of formula to teach
persons who couldn’t write with their hands. They didn't know how to help, so I told them,
let's develop a way together. It was excellent because after talking to the teachers, they
decided to face the challenge. I remember the Portuguese teacher said she didn't know
how it would work out, because the subject demanded writing, and I told her, Ok, but I
can't write. The solution came soon afterwards, Elza donated me a computer. At the time
the monitors had a green screen, and there was no adaptation. I started to type with my
tongue. My mother helped with some saved money and we bought a printer. This is how I
started to prepare the homework but I had no way to put accents of words, so I would go
to school and asked the teacher to show me which words had accents so I would make
the corrections. This is how it worked till 8th grade.
Later I was given another opportunity at Clara Mantelli Adult Education School
(71) in the Belém neighborhood where I attended high school. At that school you study,
do the exercises and do the tests. For the other students it didn't matter if they attended
school from Monday to Friday in the morning, afternoon or evenings, but I had a
predetermined schedule because I used the Atende (2) transportation service. Due to
my writing difficulties, one teacher had to stay with me whenever I was taking tests.
There was a teacher who asked me, your caretaker cannot take the test for you? and I
said no. I didn't want to run the risk that my caretaker would help with the answers, if he
knew them. I told him: "I want you to assume this task because I want to be as fair and
realistic possible". I always thought that it was better to get a zero or a ten by myself,
than to be approved because someone else helped me to answer the questions. Study
mathematics and physics was a drama because you have to write the formulas, you
cannot just learn them by heart. I couldn't do it, I had to know by heart, even so I was
able to graduate, due to sheer will power.
There was something excellent at that school: I was not the only person with
disabilities, and another nice thing is that at the time the school already had internet, but
it was on the upper floor and there was no elevator. When I became part of the School
Council, at one of the meetings I told the principal: Mr. Carlos the disabled persons,
using wheelchairs also want to use the computer" and he said: "But Zé, the computer is
upstairs", and immediately I answered him: "it's just a matter of bringing It down. You get
a long wire and pass it outside the window and plug it to the computer".
_________________
71. Adult Education Center Clara Mantelli
That was exactly what they did, and from that moment on, things changed at the school,
they adapted the bathroom and other items. It was a question of dialogue and showing
the needs.
But it doesn't have to be that way. I get annoyed because the laws that bind all
school to adapt to the disabled are not followed. The reasons given are the most absurd
possible: "oh, but here we have no disabled", so I don't know if it is not high time for us
to do something to have things happen. I also am saddened by the position of some
disabled persons. The other day during a report at a FCD meeting in Artur Alvim, one of
them said: "I justify that I don't vote because at the school where I should vote there are
stairs", so I asked him why doesn't he transfer to another school that is accessible, and
his answer was: "I will not fight for something they are bound to do". I get sad with this
type of position. I believe that we still have much to fight for! Many changes happened in
the lives of the disabled because they fought hard with government representatives. At
all schools were I studied some adaptations were made in the bathrooms or regarding
the accessibility to the upper floor. Other disabled who will study there will benefit from
these improvements.
Besides the political awareness, FCD gave me a different life perspective. If
AACD gave me physical rehabilitation, the movement offered me a kind of social
rehabilitation. For instance, until then, my mother had to mouth feed me. It had to be her. I
had to take her or someone from the family wherever I would go. I remember the first time
I went to a movement camping, my mother went with me. But at a certain point, on the
evening, it was funny when she went to the men's room to brush my teeth. A collaborator
from the FCD of Americana said: "So you have to brush his teeth? No Mrs. Garia, we will
give your son lesson and a few slaps, leave to us".
From that moment on I noted that it was nice to have my mother beside me, but it
didn't have to be 24 hours a day. She could even take care of other disabled persons. It
was when Mrs. Garia started to participate in a pool where my sister took care of me and
she took care of someone else.
We started to realize that it was not only the mother who would be able to care,
other people in the community also can provide care, and this is the reason why we
defend so fiercely the insertion of persons with disabilities in the community; because
parents, sisters and brother, one day will pass away. I don't know who will die first, and
what will happen if I outlast everyone else? How will I be able to bathe and eat? So you
have to trust other persons as well, those at your side. This was the "social rehabilitation"
I've learned at FCD.
I still depend on third party's help. I can't eat by myself, so someone has to feed
me, but presently I don't depend solely on my mother. Anyone can help me. It can be my
mother, wife, a neighbor. We have to trust people, and the family has to trust that people
can take care of me. The way FCD operates, fetching the persons with disabilities at
home, teaches the family to believe that they have to believe in that collaborator. The
collaborator is a person with no disabilities who lends me his hands.
I use to say that I am so blessed by God that sometimes I may have three people
helping me, so I get six hands, and therefore I am able to do many things at once. I may
go out and celebrate, every September 21st is the National Day of Fight of the Persons
with Disabilities - once we even closed Paulista Avenue. It was fascinating. In the pictures
of that event you can see me, holding my lollipop - which was how we called the posters
where we wrote our claims on - with someone pushing my wheelchair.
Once I went to a seminar of the movement at a ranch-hotel and saw a very
interesting thing. At lunch I saw Serginho being fed by a deaf person, and both of them
were "talking". I started to ask myself how they were communicating, he could not make
gestures because his hands had involuntary movements and he had extreme difficulties to
articulate his speech. Those who knew him had trouble understanding him, but this didn't
happen with those who were not used to hear him. But both of them were communicating
with no difficulties, I still don't understand how.
It seems that presently in terms of the rights for persons with disabilities, the
Brazilian legislation is the one of the most advanced ones . Therefore, I believe that now
our role is to have these rights being respected. But even with so many advancements, I
see that some disabled are satisfied with the status quo, waiting for a neighbor to be
able to move around. In terms of impediments such as fear or lack of motivation due to
advanced age, prevent these people to look for schools that already have accessible
buildings. I want to go to college.
The ramps and elevators at the subway stations are not there because the São
Paulo government is nice. That was the result of a fierce fight. It was very difficult for them
to note that the Artur Alvim station didn't have sidewalk accessibility. It was only after we
had a meeting with the persons in charge of that sector that they started to build the ramp.
These conquests don't happen overnight, they are the fruit of a continuous work. I would
like everyone to fight for their rights.
Even with momentary disappointments - I go on with my actions. My daughter
doesn't need adaptations, but I like to think that if she becomes a teacher or a
physiotherapist, she will know how this is important. I use to say that since I started to do
politics I got addicted to it, even when things do not happen as quickly and as efficiently
as I would like. I still am frustrated to see how long politicians take to some actions that
by experience I know are very easy.
Today I have an "adapted" house, within what I can call accessible. There is an
adapted computer and other resources as well. But I know that not everyone has these
resources. I have to think about those who are less privileged.
We fought hard and achieved some social assistance programs, however many
of these conquests were limited to the municipal entities that manage the neighborhoods of
the city of São Paulo. I know that if will not claim all the time, the public power will not budge
to make easier the life of disabled persons who live in slums. I can go to the regional city
hall, complain and claim, but those who live in slums cannot go there and say that they
want = like things like the Atende service, because I am in position to complain saying "if
you don't send it I will claim my rights". Even this service, Atende, has to be improved. They
send a car to fetch me because today I am part of the Municipal Health Service that signed
an agreement with Atende so they will take me to the meetings. But slum dwellers have no
resources, telephone or the necessary knowledge to claim their rights.
Recently I attended a meeting at the Municipal Heath Council, where we were
discussing about the need to disclose to the general population the functioning the
emergency ambulance service (SAMU). In my opinion, the population has to know that
SAMU works with a hierarchy of importance. First they serve the most urgent calls, but
the public doesn't know it. They call and despair till help arrives.
One of the doctors who represented the secretariat said that we didn't have to
inform the population. I almost lost control and asked him why not? People have to know
how the system works. Some people want to hide information in such a way that it
seems that the military dictatorship is still in force in Brazil. This physician made me
worry, because I noted that even after 30 years of fight of our movement, I still have to
represent the population in certain places. It is still necessary to have someone like me
to fight and help people. This is my opinion because I belong to the generation that
fought for many causes: we fought for transportation, wages, employment and other
social issues that involved persons with disabilities.
I belong to a time when we only saw accessible buses and trains in European
movies, because not even Canada had such a service. It was a dream; the first problem
of a person with disabilities has always been transportation, therefore we fought hard for
it. I took part of meetings, not only at FCD, but in an itinerant forum as well. Next to me
were people such as Gilberto, Cândido, Luiz Baggio and Lia Crespo.
The north-south subway line in São Paulo didn't have any adaptation until
MDPD and other entities of the disabled sued and won the suit binding the Subway
Company make accessible all subway stations. When there was no accessibility it was a
nightmare because the subway employees or users had to lift us in the wheelchairs to
pass over the turnstiles. People gasped trying to understand what was going on and
thinking: "what is this guy doing here?", but we had no alternative, either we passed over
the turnstile or we wouldn't move around the city.
The ramps and elevators don't exist because the government is nice. To have it
happen we did some crazy things: once we tied a disabled person to the steps of the
subway station to protest on the National Day of Fight of Persons with Disabilities. I also
remember something cool that we did at two of the subway stations. We arrived in a
group of around 40 people in wheelchairs - obviously there were no elevators - we
decided to leave the station through a concrete staircase . The subway employees came
to us saying that we could not do it. We answered that we had t leave the station
becausee we were going to the movies and that we would not move from there, even if
we had to wait the whole day until everyone of us would be taken to the sidewalk. At the
same time we had already prepared a manifestation outside the station with a sound car
and the press. This episode happened after the International Year.
Even after all this, there are still things that have to be ccomplished. Many laws
are still in some drawer at the Senate, Congress or Town Halls. At the same time there
are disabled who haven't assumed their rights! I don’t mention just the voting Issue. It
seems there is some accommodation or lack of information. Noboldy acts as I did when I
arrived to my first school. Itold the principal that an adapted bathroom had to be built,
and while this would not happen I would pee in the class room, because there was no
other place for me to go t; every time this happened he had to leave the classroom. The
other option would be to urinate in the classroom, but then the teacher would have to
take 40 students from the classroom. Therefore It would be easier to have just one
person from the space to that I could use the urine collector. The direction thought it
would be difficult to make the refurbishing. But I insisted that the adapted bathroom
should be built. Sometimes I would be asked If it would be worthwhile so much effort,
because soon I would be out of school. This was an absurd thought as if after me there
would not be another disabled person at that school - until the direction of the school
asked me how the situation could be solved. I advised them to get a design form the
Municipal Council for the Persons with Disabilities. We fought for the budget and the
bathroom was made. I am sure other persons are using it. This happened in 1998.
I remember one day a priest came to my home and said "we will say Eucharist here,
at your house", I answered that I didn't want it, he answered "but aren't you catholic?", I
replied I was, and the priest asked if I was conceited, I said I wasn't, the point is I wanted to
go to the church. The priest said it was very difficult, someone would have to push me to the
church, and wouldn’t it be easier if I came here to talk to you? I answered: But father I don’t'
want to see just you, I want to see all mass attendants, I want to be part of the community, I
want to be part of it". Today, the church has a cutout curbside and an adapted row of seats.
This is something that still happens today, therefore the fight can't stop. Today,
there are days that I ask my wife to tell I'm not home when someone calls, because I want
to stay home and play with my daughter. But I still have some plans. I intend, perhaps next
year, to create a service for the disabled, an NGO not just for the disabled but that will
encompass different sectors of the population. I think of homeless children having access
to education, learn handicraft, perhaps computing courses - something to identify the
potential of these persons.
FCD has 30 members in this region, people who live in the neighborhoods of
Artur Alvim, Penha, Itaim Paulista and others. It is possible to get in touch with other
associations, make partnerships with the Rotary Club and others. My sister volunteered to
help in alphabetization, another person is going to give painting classes - we will start
small and grow. I've been speaking about working with disabled persons and look for work
opportunities for them in the neighborhood where they live. The person with disabilities
doesn't have to work downtown if the businesses in the region are willing to hire such
people - but this may only be achieved through a wide awareness program.
I even mention retirement, but I'm unable to stop. I go to a meeting always
thinking in the coming month meeting. There are days when my wife says: "Zé stay at
home today. What are you going to do there? You'll get annoyed and angry" but when
the car arrives, the only thing that comes to my head is: "let's go, someone is in need". I
think I want to share what I've learned in the movement. If they are going to profit from
the learning the same I did, I don’t know. I'm active but always waiting that others show
up to lead the fight so I can stay back. But I see how difficult it is.
I don't see the entities going to the streets anymore. This year happened
something that left me worried, but nobody mentioned it. A friend and I started to place
phrases of the day, fight phrases on the Orkut. This was when I became startled
because we were doing a web movement, what does it mean? It means that we don't go
to the streets as we used to.
I remember a very cool manifestation during Mayor Celso Pitta term of office. At
that time there a small number of adapted means of transportations, although a law
ruled that half of the fleet should be accessible. Therefore we went to D. Pedro II subway
station to go from there to the City Hall, which at the time was located at the Palácio das
Indústrias (73). When we were coming out of the subway a downpour started to fall, but
we were so enthusiastic, that we went on. I don’t' know where from appeared two police
cars, and the policemen told us that they were not preventing our manifestation, but
rather would escort us, anyway they didn't have where to put so many persons in
wheelchairs. When we reached mayor's office soaked, we were told he wasn't in. We
told them that we wouldn't move until we saw the mayor, he showed up ten minutes
later. Then we elected a committee to talk about accessible transportation. Although wet
to our bones we were very happy for we met the mayor. Last month I went back to
Carmo Park and I wanted to see the big house again, because it has history.
Between 1992 and 1994, at mayor's Erundina term of office, the movement
wanted a ramp to be built in the building above mentioned that once housed the City
Hall. There, the city hall developed and offered deinstitutionalization programs and
professional training for those with mental diseases. It was a day center and we also
wanted to have access to it. It was a wonderful phase in my life, because we lived with
those persons in the same space. But to achieve it we had to fight fiercely to have the
ramp build. The architect would say that as it was a historical house, it would lose its
original features. We replied that we didn't mind, we wanted accessibility, the city hall
made a proposal to build the ramp in the back of the house, we refused, for we wanted
the ramp in the front of the house. We sued them, a big fight and we won. The house
became a museum and the ramp is still there. Due to the ramp issue, other parts of the
park have also been adapted. I wanted to see the place because I know how much we
fought for the ramp, but the house was closed on the day I went there. But I thought: "I
did something during my lifetime, I'm history!"
Unfortunately we don't see this anymore. We, the older persons with disabilities
expected that the younger ones would start to assume more responsibilities and even
would discuss what the fight and is where it is going, which claims would be made from
now on, etc. But when we arrived to the Municipal Council for the Persons we were
disappointed not to find the seriousness and excitement we had. .The present themes
are outings to see orchids, and things of the kind. I think that they are making many trips
with the disabled and are not offering a political proposal to the group. The persons of
my generation saw a city with no accessibility and today you go around and see many
changes such as all shopping malls adapted. Even the Health Secretariat, when I
remember I had to go into a room to use the urine collector, today has an adapted
bathroom inside the Council Room.
It is a whole life, and when I remember how many things have been done, I
think I've been blessed. I always thought that there is the disabled José Roberto and the
fact that there is the man José Roberto with all his dreams, the desire to get married and
have children.
___________________
(73) Palácio das Indústrias (Palace of the Industries) former headquarters of the City Hall of São Paulo, located
downtown, in 2009 was transformed into a Public Sciences Museum called Catavento (Windsock)
After dating many women, I found the right person to be my wife for my whole life. I met
Zelinda, we got married and had Yara, our daughter. We agreed on many things before
the marriage. We dreamt of three children, but reality is different from dreams. We
discussed the issue. I am against that type of family that has ten or more children and
don't think about their support, as I don't believe that one should look towards the
government to eat and get clothing.
When Zelinda was expecting Yara, we were worrying to know if the child would
be disabled or not, but the doctors guaranteed that the child was normal and in good
health. They told me she would grow up, study, give me headaches and plus many other
things, but she will not be disabled you may stop worrying about it. Today, we have a girl
that walks all over the place, is so messy that we had to put all breakable items out of her
reach. I like seeing it. Obviously I reprimand her, but deep inside, I'm happy, but then her
mother has to straighten out the house once more. Thank God that was a dream come
true, I have a daughter whom I adore.
Zelinda and I met by chance, We were studying together and she was taking an
art test. All of a sudden my wheelchair banged her chair, she looked at me angrily and I
looked back angrily at her, soon afterwards she was giving me supper at the mess hall.
Until then she only looked at me and found my body movements strange, because I
budge a lot. Slowly we got closer, we started talking and even if she is paralyzed on the
right side of her body, she started to help me at school, pushing me here and there so I
wouldn't need a caretaker. This was repeated in our home routine. Obviously she
doesn't do everything, but she does most of the things.
Usually a brother helps me, but when he is out, Zelinda helps me to get into the
wheelchair, put the shoes on, dress, etc. If I have to leave in one hour, she starts to
make me ready two hours before. Today she has to divide her attentions in two: between
the little baby, and me - her big baby. Our family created some interesting habits. At
meal times, lunch or dinner, instead of placing three plates, we decided to improve the
situation: we put everything on one plate and we distribute the food. One just adapts to
needs, in that sense, the baby still sleeps with us, because it would be difficult to put her
in the crib, because Zelinda sleeps without the orthesis that gives her balance; therefore
if she has to tend the child, it is easier if the child sleeps with us. When the baby will stop
breast feeding and sleep better, then she will go to her crib. As we have the habit of
adapting everything, Yara climbs on the box on which I put my feet while eating. As she
sees the mother feeding me, she wants to do the same. We are waiting for her to get a
little older to make pasta with lots of tomato sauce to have fun and play with her.
I want Yara to study. I don't know if she will be a physician or a teacher…, I will
let her choose a profession. I invited a couple of friends to baptize her and said that she
would receive a Christian upbringing, not necessarily catholic, but If someday she'll
decide to become an atheist, we will not prevent her. We will give her Christian morale
and religious education. We will touch the subject whenever the opportunity arises, but
one doesn't know the future. She will have the freedom to make her choices, for this is
something life has taught me. It is useless to say that it should be that way or the other,
thus my daughter will have to find her way, and to what she'll want to do.
I have the marriage I've dreamt of with Zelinda who accepted my proposal. It is
not easy to life with José Roberto, a boring guy, totally dependent, one has to pull his
pants, put the urine collector in place, bathe, but who also needs company to go out and
someone to chat with on Saturday evenings. Now I have two people! I am sure that my
daughter will follow me, I want to teach her all this willingness to transform things that I
have.
In short: I have a happy life, even though the money is short and does not last
till the end of the month, I share with my father's pension with my mother. Zelinda
receives the Loas (74) for being and orphan and disabled due to polio. After she got this
benefit, some work opportunities appeared, but to accept them, she would have to give
up the benefit. We thought about it and decided it was safer to continue with the benefit,
for today she could have a job and loose it tomorrow. We are thinking of something we
could sell in front of our house to increase out income when our daughter starts school.
It's funny that in the past I loved to go out to the movies, to have a pizza, to go
other places and come home late. Today I leave the house to take care of my things, my
lectures, my meetings and I crave to go back home. There are various reasons for that:
one because I love getting to the front gate and hear "daddy" being called. It Is
interesting that I was told I wouldn't be able to become a father because I didn't have a
ways. I never understood this phrase, I also thought about the meaning of the phrase.
When Zelinda was in labor, I didn’t have the courage to be at her side, but I wanted to
carry my child, but I couldn't hold her because I have heavy hands and any wrong
movement could harm her. I was worried how I would carry her on my lap. A nurse or a
volunteer at the hospital, held the baby close to me, and I kissed my daughter when she
was 2 hours old. It was the most important thing that ever happened to me. Today I live
to wake up at 2 am and hear: "Daddy let's watch Xuxa? So we go and watch - what can
I do?
I want Yara to grow up seeing many persons with disabilities with naturality. I
asked the godparents to help in one point: take part in the teacher-parents meetings at
her school because I'm a proud father. Regarding her school friends, they'll tell her:
"your family is different, your father uses a wheelchair and your mother wears an
orthesis and crutches. I told the grandparents that if this will happen they should tell her:
they are different but they are your parents.", and perhaps this will not happen, because
we always take Yara do AACD were there are many disabled couples with their children.
If there is a meeting in Itaquera or any other place where there is a FCD center or group,
we take Yara along; there we also meet many disabled couples with children and they all
play together, we believe that this way she will perceive that being disabled is something
natural in life and this coexistence with disabled persons might not be something strange
in her mind.
Now I have a fixed idea. I want to do something different, I want to became a
city councilor, if this is going to happen or not, I don't have a clue. But I want to do it - my
father used to be very much involved in politics, but never was a candidate for any
government position. I don't know if I'll be a candidate in the next elections. PT (Workers
Party) didn't issue any answer to my request. I may even, loose, that's a different pair of
_______________________
74. BPC-Loas is a Social Assistance Continued Grant - given by SUAS (Unified Social Assistance Service), paid by the
government and operated by the Social Security and enforced by law.
shoes, but I want to try to run for the position of city councilor. Only yesterday I was
mentioning this project to a friend of mine. I don't want to be just a representative.
People are going to make policies with me. I don't have any project. I want the people to
bring me their needs. Perhaps I may even break the framework. I want people to sign
documents. If they will not be allowed to, I'll fight to have it happen. I want the goals to
be achieved. One example is that every means of transportation has to be adapted and
is to work 24/7 even on weekends, thus the Atende program will only serve those
persons who really cannot leave their homes in a different manner.
Once I went out with a friend on a Sunday to visit a disabled person in different
neighborhood. My friend pushed the chair to the bus station for we planned to take an
adapted bus. We arrived to the bus stop and waited for a long time. We found it strange
and had a word with the bus line coordinator. He said that the company would not release
this type of bus on Sundays, although he offered to help us get into a normal bus. I
thought it was absurd and on Monday I called the Secretariat to complain, after all, how
the company would know if a wheelchair user would go out or not on a Sunday? The
same goes to schedule limits of night lines, because persons with disabilities study at
evening courses and leave school after 10 p.m. I believe there is discrimination in this
story.
Atende is a service which presently is completely overloaded due to the fact that
bus companies do not abide to the law on accessible transportation. If we have more
adapted vehicles, everyone's life will be easier. My neighbor will be able leave at the
closest bus station, because I will be sure that at fixed time, an accessible vehicle will
arrive to the bus stop.
I give lectures to youngsters and I observe several things. Once, a friend and I
were talking to such a group in Mogi. Their biggest problem is drugs. At that time there
was a girl in a really difficult situation. We talked about faith, possibilities of conquests
among other things. When we had finished she came to talk to us and said that she
wanted to adopt a child, but as she is a drug addict, no judge would assign a child to her,
we asked her why wouldn't she stop taking drugs, try to find a work, and then we would
help her with the adoption steps for we have some acquaintances that may help, and we
also could help her with the child's upbringing.
Sometime later, I got a motorized wheelchair and started riding around. One
day I went to the Tatuapé mall and all of a sudden I heard someone calling me, I though
the girl was making a pass at me, but when I got closer she asked me If I remembered
her, I answered that I was sorry but I didn't recall her, then she said she was the drug
addicted girl at the meeting in Mogi that wanted to adopt a child, and she told me she
stopped taking drugs, adopted the child and was working. I thought: "Gee, who wants a
better compensation than this one?" I never saw her again, but people tell that the child
is growing and she is taking good care of the child. This made me feel the happiest man
in the world for having helped someone to be saved!
This is what makes me happy, but is doesn't prevent me for wanting other
things, like resuming my studies, go to college. But after all these fights, I would like if
persons with disabilities would accept themselves more, would "get out of the egg shell".
I say it by experience, because leaving the shell is great, and making mistakes is
Important. I made many mistakes, but I've learned with them.
We should invest and believe in ourselves, as well as help the others. This
doesn't mean monetary help, but act. That ramp in the subway, the elevator I fought for,
etc. If one day history says "Zé Roberto has been here, Serginho has been here" it will
be cool. I and everyone at the movement will be very grateful, but if this will not happen,
we will be equally thankful because nobody will destroy what we did. It will be wonderful
to go somewhere and tell Yara: Look, your father helped to have this done! So your
father was not a lazybones and didn't do anything just because he was confined to a
wheelchair. He's been a fighter.
People are contacting me, next week I will receive half of a class of São Paulo
University Occupational Therapy students to talk about some proposals. This is going on
for that last 10 or 15 years. So I believe something good happened during this time.
Perhaps I have something to teach, so why I would not do these things? I wanted to go
to a quiet countryside village or to a small city on the seashore by I decided to stay here.
I want the Secretariat of the People with Disabilities call me whenever they need to.
They only have to send someone to pick me up.
Persons with disabilities have to assume their disabilities because it means
assuming what you are. In the past I was ashamed of attending meetings because I
shake my head when I talk. Today I couldn't care less. Last week I had a discussion with
the representative of the Municipal Health Secretariat. It was more of a good political
discussion.
I am beyond that story of miracles like "get up from this chair, don't you have
faith?" Nowadays I don't feel the need to leave my wheelchair it became a part of my
body. The difficult part is to get a new wheelchair in this country. I made the request for a
manual wheelchair at AACD and they told me I would have to wait for two years, I
answered that if I will be alive then, I'll be grateful. It is absurd having to wait two years
for a manual non-motorized wheelchair! I am afraid that my present wheelchair will not
withstand until then, but it will have to. It is absurd to need a motorized wheelchair that
costs eight thousand reais when you earn a minimum wage.
Even so, I believe that things will change! It depends of our fight we have to
leave our homes, even if it is only to stay on the sidewalk showing ourselves to the
public. Something will happen - I'm sure of it. People were afraid that when we would
attain our conquest the movement would end. I always thought if someone wants to lead
a life as normal as possible, the fight will never end. I believe that I made a good use of
my life. I did much more than staying home and watching movies in the TV afternoon. I
believe I didn't go through life in vain, because I'll leave a few things for the next
generations. What I tell persons with disabilities that are starting to deal with this
situation now, is that it is sufficient to believe in one, just that. Believe and believe, and
then things will happen naturally. That's it. Thank you.
Image. Newspaper Jornal da Tarde, January 02, 1981.
The UN Symbol for the International Year of Persons with Disabilities. On a black background, symbol and letters in white. The
symbol consists of a triangle forming the image representing two persons face to face, with extended arms and linking hands, as
children playing spinning. The whole image is surrounded by laurel leaves, the same leaves that form the UN symbol. Under the
symbol, the news title “A symbol for 1981, the International Year for Persons with Disabilities”
This is the logo that UN chose to symbolize the International Year of Persons with Disabilities that started yesterday - a year in which
physical or mentally disabled individuals intend, above us, to fight for equal opportunities.
Image. Continuation.
Page 18. The blind, deaf, paralyzed and bearers of other physical or mental disabilities in Brazil should conquer a high level of
organization, that should have the power to assure that their rights are respected. This is the basic goal to be announced by its leaders
this year, which UN established as being the International Year for Persons with Disabilities.
The leaders are part of the coordination of the Movement for the Rights of Persons with Disabilities (MPDP), created last year with
the representatives of the different associations to promote the interests of the Brazilian persons with disabilities. Until now, MDPD is
concentrating its activities in the State of São Paulo however its leaders are starting to create centers in different regions of the
country.
In São Paulo, the most active coordinators of MDPD are the following persons with disabilities: Leila Barnaba Jorge, attorney at law;
Cândido Pinto de Melo, electronic engineer; Vinicius Viana de Andrade, attorney at law; Luis Celso Marcondes de Moura,
psychologist and Maria de Lourdes Guarda, chairman of the Christian Fraternity of the Sick and Physically Disabled.
Are also part of the Movement’s coordination the rehabilitation coordinator Romeu Kasumi Sassaki and the orthopedist José Robinson
Carvalho who are not disabled. The coordinators stress the need to go beyond the limits of traditional associations that seem divided
for they defend the interests of the different groups of persons with physical and mental disabilities.
In the opinion of the leaders, MPDP should strengthen the organizational abilities of the Brazilian persons with disabilities, besides
supporting campaigns to claim rights and mobilize the society regarding a priority: eliminate the present paternalistic system that
denies to the person with disability the right to determine the most adequate more for his/her integration in the process of the Brazilian
development.
Romeu Sassaki admits that persons with disabilities live at the margin of the Brazilian society, and he justifies his opinion stating that
Brazil still ignores the size of its populations with physical and mental disabilities. Applying a method used by the UN, Romeu
calculates that Brazil has about 12 million persons with physical or mental disabilities; using the same criteria, he believes that of this
number, 70% do not receive any assistance.
Romeu says that the number of rehabilitation centers is insignificant for the rehabilitation of the Brazilian disabled populations. Also
the level of professional skills of those who take care of the rehabilitation of the disabled is also low, therefore the extreme lack of
interest for the human and social promotion of persons with physical or mental disabilities in Brazil becomes evident.
Some of them were already born disabled, while others became disabled due to traffic and mainly work accidents. Worried with work
accidents that generate disabilities, the largest unions in the state of São Paulo have just created the Inter Union Department of Studies
and Researches on Health and Work Environments (Diesat).
The physician Herval Pina Ribeiro, technical coordinator of Diesat mentions data from the INPS (Social Security National Institute) to
show that work accidents and professional diseases are responsible for the brutal increase of permanent invalidity. In 1977, Brazil
recorded 2,378 cases of permanent invalidity and in the first semester of 1980 – 8,278 have been reported.
INPS data also reveal that professional diseases that generate disabilities increased in Brazil: in 1977 they represented a total of 3.013
cases while in the first semester of 1980 such cases added to 2,163 cases.
Complaint: omission of the Brazilian government. Official data admit that in Brazil from 1971 to 1976 would have occurred only
17,282 cases of professional disease. The total number would include 16,417 cases of dermatoses (skin diseases), saturninism (lead
poisoning) and deafness which would represent almost 95% of the cases. Thus, the cases of all other diseases would be reduces to 865
cases (5%) during a five year period!
Among such diseases, silicosis, a still incurable disease, caused by inhalation of silica powder generates irreversible lung lesions. The
most recent study on the incidence of silicosis in Brazil is the phD thesis of Professor René Mendes of the Public Health School of the
University of São Paulo. He shows that Brazil has between 150 and 200 thousand workers exposed to silica powder inhalation, and
based on a representative sample, he calculates that there are 30 thousand silicosis patients. From this total, the southern region of the
country concentrates 20 thousand individuals with silicosis; 7,400 in the state of Minas Gerais; 6,900 in the state of Rio de Janeiro and
5,100 in the state of São Paulo.
Strongly impressed by the fate of silicosis patients, the active leaders of the São Paulo state unions organized in May 1917, the first
Workers Health Week (SEMSAT) when discussed with physicians the pulmonary diseases acquired in the work environment:
silicosis, asbestosis, bissinosis and other equally disabling diseases.
Although the inhalation of asbestos powder provokes lung lesions, SEMSAT participants concluded that Brazil has not date about the
incidence of this disease, and that until then only four cases of the disease had been reported among Brazilian workers exposed to
asbestos. The physicians explain that the risk is not negligible.
In other countries, the increasing use of asbestos is increasing the incidence of asbestosis and lung cancer to exposed workers,
therefore, SEMSAT participants refused to accept that, until that date only four cases of asbestosis had occurred. Indignant, the
physicians preferred to considere the four cases as an indication of the national lack of interest regarding professional diseases.
Another indication of the same behavior was the ignored incidence of bissinosis, another type of irreversible lung lesions caused due
to inhalation of cotton, linen and sisal dusts. Only in 1973, a team of the São Paulo University Public Health School disclosed a study
on bissinosis in the city of São Paulo, but it was not possible to ascertain the national incidence of this disabling disease.
Related to the Ministry of Labor, Jorge Duprat Figueiredo Foundation for Work Safety and Work Medicine (Fundacentro) graduated
from 1973 to 1978 a total of 57,273 experts, from which 10,717 are labor physicians and 11,398 and engineers specialized in labor
safety, however, SEMSAT participants accused Fundacentro of not researching the epidemiology of professional diseases.
For SEMSAT participants, the lack of interest of the authorities and institutions in charge of surveying Brazilian indexes of disabling
diseases acquired at unhealthy work environments is unforgivable. The lack of interests seemed to reveal to them the lack of
sensitivity existing in Brazil regarding important sources that generate persons with physical disabilities who claim to be reintegrated
into the society.
There are schools, but there is a lack of teachers. The government of the state of São Paulo presently has at its schools a total of 990
special classes where study 13,817 children who are blind, deaf, paralytic and mentally retarded. Although the state’s population of
disabled children is much higher, the state has better conditions to meet the needs of these children than other Brazilian states.
This is what is admitted by some technicians at CENESP (National Center for Special Education) bound to the Ministry of Education
and Culture that coordinates educational activities programmed in Brazil for the physically and mentally disabled children. According
to them, São Paulo offers to the disabled children, the public schools network and many other private institutions.
However, the state of São Paulo has a lack of skilled teachers to take care of the needs of the disabled children. To carry out the
programmed activities to the present 990 special classes, there are only 699 teachers hired by the Secretariat of Education. The state
government tries to compensate for the lack of skilled teachers adopting a system of itinerant classes.
Among the disabled children, the technicians of the Secretariat of Education of São Paulo seemed to be more worried with the
mentally retarded children classified according to the IQ levels: those who can be educated (IQ between 55 and 79), trainable (IQ
between 30 and 54) and dependent (IQ lower than 30). Only those who can be educated my enroll in the special classes provided by
the State of São Paulo.
Mental retardation or disability often times is the result of malnutrition caused during the first year of the life of a child: “there is a
cause and effect ratio between nutritional impairment, brain growth and mental development” concluded professors Eduardo
Marcondes and João Yunes from the São Paulo University School of Medicine Pediatric Clinic.
Image. Continuation.
The conclusion is based on tests and measurements of the brains of 2,647 Brazilian children (1,367 girls and 1,280 boys) with ages
ranging from 3 days to 3 years. The observation of the authors has been published in the Archives of Neuro Psychiatry Journal under
the title of “Brain perimeter in children of up to three years of age: influence of social and economic factors.
In order to research the possible cure of lesions or movement disorders in nerves and psyche of Brazilian malnourished children,
professor Eduardo Marcondes created a large team of researchers in the departments of Pediatrics and Neurology of the São Paulo
University School of Medicine. The neuropediatric supervisor of the team was Professor Antonio Branco Lefevre, who examined
mental deficiencies.
Concluding the report on the important research, the authors assigned the “evidenced mental disabilities in children due to
malnutrition possibly present in the first year of life, judging by the reduced brain perimeter that has been observed in all cases”. The
Public Health Services Foundation (FSESP) states that only 29.9% of Brazilian children escape from malnutrition.
A change in the UN behavior: For 30 years, the UN promotes programs for the rehabilitation of the disabled by means of its
specialized entities: International Labor Organization (ILO) , World Health Organization (WHO), Organization for the Education,
Science and Culture (UNESCO) and the UN Children’s Emergency Fund (UNICEF) – but they changed their behavior regarding the
disabled.
In 1950, when the UN started its experience in rehabilitation programs, it seem interested in working for the disabled, but nowadays it
seems to be willing to carry out activities with them. The change of behavior became apparent when the UN General Assembly
approved the Libyan proposal to create the International Year for Persons with Disabilities.
Confirming the change in behavior, the UN stressed the need to “stimulate persons with disabilities and their organization to take
active part in the activities foreseen for the International Year of Persons with Disabilities. Besides the UN recommends that the
disabled should have equal opportunities to those offered to other members of the community, thus eliminating paternalism.
The UN General Secretary, Kurt Waldheim, determined that architectural barriers are to be removed from the buildings that house UN
entities, where the access to “all people without discrimination” is to be facilitated. However, the behavioral change may be tracked to
1975 when the UN General Assembly adopted the Declaration of Rights of Persons with Disabilities. According to clause 12 of the
Declaration “the organizations of persons with disabilities are to be consulted regarding all issues related to the exercise of inherent
rights of persons with disabilities”.
In the same sense, clause 9 of the Declaration of Rights of Deaf and Blind Persons approved by unanimous vote in September 1977
during the Helen Keller World Conference from the World Council of the Well Being of the Visually Impaired determined that the
blind and deaf should have the opportunity of being consulted regarding all issues that affect their direct interests as a social group.
More clearly, the Manila declaration approved by the Second International Conference on the Legislation of Persons with Disabilities
proclaimed in 1978 the law that will guarantee the maximum participation of persons with disabilities in the decision taking processes,
in the formulation of policies and in the implementation of national plans that are related to their respective collective interests.
Private associations support the UN behavioral change. In the US the organization for the Right of persons with Disabilities,
established in California in 1979, created a Letter of Rights of persons with Disabilities that has 16 clauses. One clause expressly
assures to persons with disabilities the “right of determining their own destiny and to define their own life choices”.
The UN calculates that the population of persons with physical or mental disabilities is around 500 million individuals; however, it has
been noted that 60% of this population has no access to rehabilitation techniques, which contributes to the total marginalization of
disabled persons, hence UN’s priority to assign programs destined to the assimilation and application of rehabilitation techniques.
A document requesting the end of paternalism
Leaders of MDPD committed to distribute to the public this week five thousand copies of the document that JT discloses with
exclusivity: the Program Letter of the Movement for the Rights of Persons with Disabilities in Brazil. Thus, the distribution of the
Program Letter coincides with the opening of the International Year of Persons with Disabilities. The authors of the letter state:
“The problem of persons with disabilities in our country is inserted within a wider universe that encompasses the establishment and
the situation of Brazilian people. The marginalization of differentiated social segments has been disguised by the paternalistic trends
of the Brazilian elite. These segments include the disabled, slum dwellers, African descendants, homosexuals and prostitutes among
others.”
“The idea that there are no biases and that all social segments are integrated is driven by common sense, embodied in such
protectionist laws that are drafted top down and that mask reality”
“Paternalistic attitudes have been pacifically accepted for a long time without questioning and without the awareness of a reality that
becomes more threating every day. In this sense one may see today the marginalization of the disabled reflected in the following facts”
“One is the wrong notion that disabled persons would have lower capacity and respectability, being unable to take their own
decisions. Other is the lack of unpreparedness of the rehabilitation entities and professionals who inadvertently assume a posture of
superiority face to their clients not asking them about their needs or personal options”
In the Program Letter there are more incisive denounces when the authors vehemently accuse “long stay institutions where elderly and
disabled persons deteriorate lonely, humiliated and deprived of assistance until they die”. Or yet the environmental barriers that
prevent the access of the disabled to school, work, voting urns and leisure places”
But the authors of the Program Letter do not limit themselves to denounce the symptoms of injustice or social inequalities that they
intend to correct, but they also define the three specific principles for a behavioral change regarding persons with disabilities”
“1st. – Persons with disabilities are an integral part of society and demand effective respect to the rights and responsibilities reserved
to them, so that they can fully participate of life in the community as well as to contribute, as human beings socially useful”
“2nd – Persons with disabilities are not claiming benefits that have the features of benefits, concessions or donations, but they claim
for what they have full right to as citizens of a country and as whole human beings”
“3rd – Persons with disabilities state that only a joint action, conscious and with pressure power will be able to clarify and mobilize
the society and the State for the different needs that persons with disabilities have”
Inscription: Neswspaper Jornal da Tarde, January 02, 1981.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Lilia Pinto Martins
Image: Colored Picture of Lilia Pinto Martins.
“The movement of persons with disabilities really started and gained consistence during 1981. But at that moment, I believe we were
not aware of the influence AIPD on the movement organizations”
got polio when I was 2 years old, during World War II in 1941 or 1942, in Rio de
Janeiro. At that time there were no resources In Brazil. My family was faced with that
reality and made available the best available treatment at the time. When I was perhaps
3 years old I attended a clinic and underwent my first surgery in São Paulo. For a long time
I did physical exercises according to the prevailing conditions in Brazil, for there was no
physiotherapy or something more specialized in the field of rehabilitation. I spent long
years of my childhood in this schedule of treatment and surgeries.
I
Always trying to walk I used very heavy orthopedic devices that went from the
waist to the feet and made me look more as a robot than a real persons. I also remember
how afraid I was of using crutches with a terribly heavy device that would not give the
necessary balance.
Until I became 8 years, as was the tradition at the time, I underwent six or seven
orthopedic surgeries, all aiming to achieve a better gait quality. I believe that deep down I had
a perception that I wouldn't be able to walk and I wanted other type of things, I wanted to stop
those attempts that were terribly frustrating, therefore when I was 8 or 9 I started to take
important decisions that were of great relevance for my whole life.
During childhood I could not attend regular school because no school would take
me. I remember that at the time, very embarrassed, my parents took me to take a test at
the Pestalozzi Society (an Institution that cares for mentally disabled children, youngsters
and adults). Luckily I was not approved otherwise I would have done my elementary
school at Pestalozzi. Not that I am against it, but the fact that I was not approved gave me
the opportunity of not becoming closed within a special schedule. During my childhood I
had private lessons at home, not exactly by teachers, but by ladies that did it as a hobby.
They would not give any notion of duty or discipline, so I would trick tem all the time. I
would cheat my own test. I was very much left to myself. I only attended schools much
later.
I have siblings who are a pair of twins, with just a year of difference between them
and me. They attended school and I remember that I took advantage of their opportunities.
I used to go to school parties, end of year festivities… and I lived that a little as if that
would be "my space". At the time, I was very common for the girls to make "souvenir
books" that were passed around to that the colleagues could write a message that would
be kept as a souvenir. The colleagues to whom I made my book for were the friends of my
sister and brothers, so I would always be nagging them. This has a profound influence on
me.
Due to my disability, everyone, but especially my parents would compensate with
privileges. For instance, as I didn't attend school I could wake up whenever I wanted. If I
decided to have lunch at a certain time, it was OK, if I didn't want to have lunch It was OK
too, if I didn't want to bathe, no problem. At that time I used this power as a gain, but for a
child it was a somewhat schizophrenic situation and it was harmful for my future life. To
have all this decision power and know that my desires would prevail over any notion of
discipline or duties caused me trouble when later I had to assume commitments. Also the
fact that I lacked the notion of a more private space where I could enjoy a desire like being
mine, without something being made available by someone.
I believe that I had sufficient mental health to break this circle. I decided to take
an admission test to a traditional private school In Rio de Janeiro and started my school
education. I did what at the time was called gymnasium (5th to 8th grade), and classic
studies (high school) chosen by those students who wanted a carrier in Humanistic
fields. From then on, the process had a normal evolution.
At the same time that I decided to attend school I also decided to stop all
treatments. I took this decision by myself when I was 8 or 9 years old. It was then that my
family bought me the first wheelchair - until then to move around I had to drag myself on
the floor. I used clothes that were practical for the circumstances .I always wore a type of
trousers that at the time were called jumpers and had straps with buttons like suspenders.
This would keep them in place while I moved around.
When these three things coincided - my rupture with inertia, the fact that I started
school and got my first wheelchair, it was as if the notion of my disability has really gained a
reference and a reality. Perhaps until then, my parents, unconsciously - due to their difficulties
- still expected a miracle that would enable me to walk, but at the moment that I perceived
that this was an illusion, I believe that they also gave up that phantasy. When I received my
first wheelchair - it was as if I had really started to sit on my disability.
I gave up rehabilitation, treatment and really gained life. I went to school and have
always been a good student.
From my family I got was I considered a gift, it was a large family on part of both
parents. Therefore, I had many uncles and cousins. A family that was always together and
that celebrated everything together: birthday parties, Christmas, Mother's Day, etc., all this
centered around my grandmother on father's side. I had much of contact with those
cousins. It was a great joy. Later, my father built a house in the countryside where the
whole family used to gather and the cousins would always spend vacations with us.
In spite of not having a school life - at that time school refused children with
disabilities - I had this strong and intense contact with cousins that were my age. My
uncles also believed that I could go anywhere and they always were willing to have me at
their homes. At that time they lived in two store houses, but they would take me upstairs
and I slept with the children - no differences among us, and this gave me strength.
Until today I fight between two plans: in one I see my childhood as a very happy
period, with many meetings, strong relationships that gave me the support for a whole
life of future relationships. At the same time there is the other side marked by denial and
suffering for it is not easy for a child to be submitted to surgeries during several years,
experience the issue of immobility, of being different, of being unable to play with other
children.
On the other hand, there was certain tiranny on my part. I dictated the rules.
When we played running, I would say: "jumping out of the window is not part of the rules,
you can't do it". If I couldn't jump out of the window, nobody else would jump. Things were
made my way and the children ended up adapting to my way of playing. Today I always
think about writing on siblings of children with disabilities, because they also have a
difficult situation to cope with. My brother still mentions how difficult for him was going to
school and leaving me behind….the guilt is spurts … as I didn't use a wheelchair and was
always on the floor, I would bring them to a situation, that if it wasn't the same, was similar
to mine. I remember that my sister and I played for hours, she also sitting on the floor. I
don't know the weight it had in their minds. I know it had a weight, as well as for me. This
issue of bringing the other person to a situation close to yours not acknowledging that
there is a difference is difficult. They had a mobility I lacked; it was said that all are siblings,
all are equal. But I ask myself how fair it has been to impose to my siblings to the denial of
our difference.
"Ties" have been built among us. One wouldn't go where the other wouldn't. A
situation where my impediment built their impediment was created. I am saying this in
emotional terms, at the unconscious level. But I believe this brought very strong elements
that you find out along life. I did psychoanalysis for many years, and this was fundamental
to understand these life questionings during childhood.
During my adolescence I lived with groups. We always travelled to Itaipava (a
neighborhood of Petrópolis, RJ) where we own a house. There were groups of teenagers
who visited us, everything made much easier due to my condition. I remember that ours was
a house were doors were permanently open. It was there that friends met during our youth.
It was an open house so that people would be willing to come and at the same time would
make me participate in the groups. I also believe I had some talent because people had
intense relationships with me. I had great friendships at that time, with people that I still meet
today. They thought it was OK to carry me whenever they went to, I remember there was a
natural water swimming pool at a neighboring farm. Although to reach it there was an
irregular unpaved road with ups and downs, everybody took me, pulled the chair, or one
would take the chair and other carried me in the arms. For them, taking me with them was
not a problem. I also always went to the beach with my friends and there was always
someone willing to carry me for the wheelchair wouldn't go until the beach. I stayed with the
group the whole time.
My parents made everything easier on account of the open house. But there has
been my willingness towards these meetings and the need of relationships. The strongest
impact was when I graduated in psychology. That was the moment when the party ended. I
saw myself as an adult, having to assume a professional side and at the same time I had to
face a reality for which I was not prepared
As soon as I graduated I entered a very strong and intense crisis, the big
depression of my life. It was the time of weddings, the period where young people
between 20 and 30 years got married. My sister got married and other girls married too,
and a boy who was a great friend of mine also married. This triggered a very strong crisis.
I panicked and it was then when I started analysis. I was the fifth wheel, I didn't have a
relationship. The issue of sexuality was the greatest difficulty in my personal life. It was
very difficult and I didn't dare to face it. At that time, I wasn't able to assume or see myself
as someone with sexual desires. I was always the friend, the companion who was always
willing to hear, the confident. I was the friendly shoulder, always there to hear the dramas,
crisis and romantic stories of each one of my friends. Obviously I fell in love several times.
But it was something very personal, I didn't dare to risk and find if there could or not be a
real relationship.
My professional life put me in contact with these issues, both at professional as
well as at a personal level, and it has been a very important exchange. The director of the
Psychology school at the Pontifical Catholic University of Rio where I graduated offered
the possibility of a traineeship at the Brazilian Beneficent Rehabilitation Association
(ABBR) in Rio. I did the apprenticeship and ended up being hired as a psychologist. I
made my career around the association, where I worked for many years. Much of my
professional experience was the result of the exchange between my clients and me. For
me it has been a very important experience because understanding the person I was
treating, I was able to work many issues around disability and what disability means. At
ABBR the priority client was the person with disabilities. Evidently it was a situation very
close to my own situation. There were favorable and unfavorable aspects in this situation
as for instance counter-transference.
Once I went to see a recently hospitalized patient with chord lesion. When I
entered his room and introduced myself as the psychologist of the institution, he didn't
accept me, he didn't want to be treated by me. I perceived that for him, the great question
still was: what will become of me? I supposed that my condition as a disabled person
would perhaps confirm the reality he still was not ready to admit. On the other hand, I
treated other patients where the common situation - disability - made communication and
the creation of an identity, much easier. Often times we work these issues in groups. Even
later, at the Independent Life Center in Rio (CVI-Rio) we formed groups to discuss what
means to be a disabled person and his/her sexuality, always with the idea of an exchange
among equals.
It is very difficult to leave the position of a professional - owner of the truth that
knows much more that the person that's being treated, and assume a move available
position to share situations and experiences, give the other person the possibility of an
active role. For the Independent Life Movement, this is the basic emphasis of the concept
and philosophy of independent life. I had to undergo a series of circumstances that
brought many conflicts. I left a very empowered position as a professional to be able to live
the experience of breaking very well defined parameters of the analysis, of analytical
psychology in which the therapist, analyst had to have a very formal and controlled
posture, to let the person speak and thus to enable the unconscious to surface. This is a
theoretical position you assume, but in the situation I found myself I had to adapt, without
trying to run away from my vision and my conception of life. My comprehension is still
psychoanalytical.
What I do today is a very natural proposition, to go beyond a psychoanalytical
theory to an institutional solution into an institutional situation. One doesn't do
psychoanalysis in an institution. Better saying, you do psychoanalysis in an institution, but
not the in the same fashion of the classical traditional psychoanalysis that you to at the
office. This was very important for me, because I really started to create institutional
spaces for a psychological work.
Besides this professional influence as a person, the familiarity with other persons
with disabilities was very important for my individual development. Another thing that took
longer to be solved: the sexuality issue. Only when I became more mature, I was able to
break certain resistances and difficulties to get close. I had my first intercourse when I was
40 and some years, and it was a fortuitous chance.
At the time, I was doing a research about the issue of what is a woman with
disabilities. I believed, as I still believe today - in spite of the advancements that appeared
- the condition of the woman with disability didn't have any space.
In all discussions on sexuality in which I took part, men always had the first place.
All worries were around them, mainly those who had medullar lesion due to the issue of
erection and the possibility or not of having children. The women in the group didn't talk. I
thought I had a contribution to give, if I could reflect with other women, what does it mean
to accept oneself with a different body, and even so, to acknowledge oneself with
sexuality. The research took me two years I interviewed personally many women with
disabilities to treat the sexuality issue.
I had some answers that consistently changed my way of understanding the issue.
At the same time that I worked with these women I reconstructed in my mind a vision of
what would be a woman with a disability. I had my parameters, my vision of the world, my
difficulties and resistances; and I saw women who had broken these notions a long time
ago, who fought, faced the challenges and built affective and sexual relationships, women
who faced maternity and had solid relationships. But I also collected many depositions of
women who confirmed my suspicions that they've been much more rejected than men with
disabilities. Many women stressed that there was always a moment of crisis when they
presented themselves with their disability and reality. At such decisive moment, there was
the possibility to build a much more real relationship, or such relationship would end then
and there.
Along this work, I obviously changed and was able to reformulate a series of
things. As of this work I changed my life parameters. Shortly after this period, I started to
lead an active sexual life. I was no longer a young woman. I don't know if due to my
history, I always built relationships intermediated by third parties, considering that my life
had always been of living in a group, with the family, I ended up building relationships that
I wasn't sure if they were or not eventual or a mere sexual satisfaction. I had many of
these relationships. I even knew that the men had relationships with other women. The
last one, the most recent was with a man who is always travelling. We had more contact
through the internet than face to face. This relationship has been very important in different
levels, but at some point he told me that he had another person in his life. For some time I
accepted the situation, but then I started asking myself: is this a relationship from which I
can expect something? How can I claim a presence, a commitment or whatever, if he
clearly stated that there is another woman? This type of situation always characterized my
relations, and now I am, so to say, inactive.
I don't know if I should insist in having relationships, I don't know, it may happen. I
will not deny it. But perhaps I have to acknowledge that I didn't deal well with these
circumstances. It has not been an aspect of my life in which I had success. It's a gap in my
life. I will not say that I haven't been sorry, but this is my reality. On the positive side, I built
very intense and intimate relationships with friends who are really friends from long ago.
People I have great pleasure to be with.
My involvement with persons with disabilities started when I worked at ABBR,
where we saw hospitalized patients. And by one of these happy coincidences - or because
historically that was the right time for it to happen - among the hospitalized persons, there
were some very active ones, transgressors of traditional models, with very high intellectual
levels and great leadership abilities. The work with this group gave us the idea of creating
a club to gather hospitalized patients at that time in order to actively work what meant to
be hospitalized at a rehabilitation center. The name of the club was Club of the Friends of
ABBR (Clam/ABBR), Clam like clandestine, which imparted the idea that we wanted to
transgress and leave the medical model then in force. It was a very particular story that
took place in Rio in the '70s, and it was just the beginning.
At that moment, we were starting a draft of what would become the movement to
claim and defend our rights. The Clam/ABBR members - practically everyone - became
active leaders. Before Clam/ABBR the only existing entities in Rio were two sports
associations, the Clube do Otimismo (Optimism Club) established in 1958 by Robson de
Almeida Sampaio and the Paraplegics Club that mixed sports activities and the role of
offering basic subsistence, housing and shelter to its participants who were very poor.
Through Clam/ABBR we started to work issues that originated in the hospital but
later were extrapolated to the society as a whole. At Clam we had the accessibility sector
(which at the time obviously had a different name) with the purpose of remodeling all
facilities of the institution so that everyone staying there would have accessibility. Another
sector worked the issue of professionalization of persons with disabilities. There was also
a more political action worked in groups. All this together with sports practice at the time a
congregational action. The first chairman of Clam was Fidélis Bueno, a pilot and author of
the book entitled The Last Flight, story of a pilot who suffered an accident (Arte Final,
1982) who suffered an airplane accident and got lesions caused by burns all over his body
surface. He was a brilliant, very congregating person.
Initially I had a distant participation, but when Fidélis Bueno was discharged and
left the hospital, he invited me to become a member of the board I was quite reluctant
because as the psychologist of the Institution I had no idea of how I could conciliate both
activities. It was an activity that involved mainly hospitalized persons. I believe that this
would mix with my professional role, because I would be in a much more informal role. I
was afraid it would take out, not the neutrality, because I dislike the word, but some of the
distancing necessary to have a vision that wouldn't be only informal. I wanted to preserve
myself as a professional. It was a hard battle I had with myself, but ended up accepting the
challenge. Something called me to do it. At that moment a new dimension, another
possibility of participation open up. It was very hard, but at the same time very exciting to
be in this new role within the institution where I worked. To have a much closer proximity
to people and simultaneously take the necessary care to not abandon a professional
posture. It might not seem so, but it was very difficult and I had to work this issue with
myself for a long while and ended up quiet involved.
It was from this initial group that was established the first association of persons
with disabilities in Rio de Janeiro: Adeferj (Association of Persons with disabilities in Rio de
Janeiro) in 1977, therefore before the International Year of Persons with Disabilities (AIPD)
that took place in 1981. I was the first president of Adeferj from which took part: Paulo
Roberto Guimarães Moreira, paraplegic; Luis Carlos Oliveira Morais, physician and also
paraplegic; Fidelis who was a pilot but had an education related to Sociology. Later we
were joined by Rosangela Berman Bieler and Izabel Maria Loureiro Maior, who also took
part of Clam and afterwards received international acknowledgement as great leaders of
the movement.
José Gomes Blanco (sole representative of the National Coalition of Entities of
Persons with Disabilities at the National Committee of the International Year of Persons
with Disabilities) belonged to a different group, he was the founder of Sadef (Society of
the Friends of the Physically Disabled) with which we had strong ties, mainly when it was
presided by Blanco. There was a basketball team at Clam that played tournaments with
Sadef, Optimism Club and Paraplegics Club. This link made through sport was brought
to Adeferj when it was created.
In spite of sport practices being a catalyst, Adeferj had political goals. Goals
drafted at Clam that were embraced by Adeferj, such as working the issue of
architectural barriers and training persons with disabilities. But mainly, we had a political
job of gathering the different associations that have been created.
There was a movement of the blind that had important leaderships, a very
strong performance and a huge name that I don't recall. We started with each
organization giving emphasis to its area of disability. At that moment we didn't want to be
joined to other movements. We wanted to be characterized as persons with physical
disabilities, the movement of the visually impaired, etc.
We didn't want the movements to mix, although at the time we promoted large
events restricted to the state of Rio de Janeiro. As those occasions, the associations of
all different fights would join efforts and we worked with the blind, those with Hansen's
disease, physical and hearing disabilities. These events we promoted always had a wide
scope analyzing all areas of disabilities, until a moment when we started to criticize this
composition and more and more we started to forward issues as a single body, working
the issues of different types of disabilities as one thing. But in 1977, the beginning of
everything, the movements were separated in classes: physically impaired, visually
impaired, hearing impaired and Hansen's disease individuals who at the time had an
active participation.
In 1981 there was the International Year of Persons with Disabilities that caused
a great boom, organizations got stronger and later, in 1988, these fight associations
participated united from the Constituent Assembly. I believe it was the first movement
that had an effective performance so that the Constitution would contemplate the issue
of disabilities. This happened through the movement of persons with disabilities. I think
this is very important, because afterwards we got a Constitution that meets more
specifically the rights of persons with disabilities. As a result of our movement, of the
work of these associations who were organized in a national coalition were enacted laws
at federal, state and municipal levels in defense of our rights
I recall taking part of the 1st Brazilian Congress of persons with Disabilities that
gathered 600 attendants in Recife in 1981. The strong local leadership was carried out
by Messias Tavares. São Paulo also was present at the movement.
At these national meetings would gather the leaders of different Brazilian states.
At that time we were much more adventurous than any other thing. I remember that we
went through complicated situations to participate from events. You would go anyway,
There was nothing foreseen. I recall once I went to São Paulo for an event, we were
housed in the athletes lodging at Pacaembú arena. For us it was difficult because we
stayed at collective dormitories, men and women together with a horrid bathroom; but I
don’t remember the occasion as being disagreeable because we had much friendship
and energy at these meetings with persons with different types of disabilities. We started
to make fun of the situation. It was very interesting because it erased the perception that
a disability is something serious, heavy, we had fun. The blind would tease us saying "I
can't stand this place full of people on wheelchairs who only serve to block our way". We
had a very nice sociability, it was interesting and enriching. We would meet anywhere we
had space at our disposal, several meetings were held at police quarters.
Adeferj had an assigned room and carried out their meeting at the Girl Scouts
Society; later we used an assigned space at the Student's House in Rio at a very old
building, falling apart - it was very unpleasant, we didn't have a good place or an
adapted bathroom. This shows how was the situation at the time, when there was no
favorable conditions, but if we didn't use what was placed at our disposal, we wouldn't do
anything.
In spite of all advances, still today, one has to face many hurdles. For many
things one has to have a willingness to participate. Presently we have on our side many
things already established such as laws, decrees that reinforce our strength, the power
we have. At that time, we would go because we had to go and because we wanted to
go. The desire was very strong. Thus we faced bus trips which had no adaptation for the
disabled. The group of visually impaired or persons in wheelchairs would rent or get a
bus from the city hall, whatever was needed to enable their displacement. I believe it is
very important to show a picture of Brazil 30 or 40 years ago. There was nothing, really
nothing. In the 1950's appeared the first rehabilitations centers. It was the great boom of
the specialty in Rio. ABBR was established in 1958. From then on started a more
consistent movement around rehabilitation,
The movement of persons with disabilities really got strong consistency in 1981,
but at that time we didn't realize how AIPD would become influent for the organizations
of the movement. I believe that the national meetings were a great challenge. At that
time, the displacement of persons with disabilities from different states was a real
adventure. There were no funds, or even when you received some funds, it was very
difficult. Even getting a bus or air ticket, the trip was very difficult for us. Often times I
took a ride with a friend. At that time, people were starting to get adapted cars. I was not
driving at the time, but took rides with friends who did drive cars. It was all on us, nobody
paid for anything nor did the associations have funds to pay something. We tried to get
donated tickets or came with our own money.
National meetings were very important moments for the movement. There was
participation from organizations from different parts of Brazil. Conflicts were emerging.
There were huge differences in what the movements wanted and claimed at the time.
There were many fights among us in the movement, but it was not a destructive fight,
something that would disintegrate the movement. It was a moment of many questionings
of seeing different angles. The blind had their claims, the physically disabled different
claims. It was a health fight because it put our diversities in evidence. Thus we would
forward the issues and a consensus would be created. People fought fiercely for their
claims. I believe that was an historical moment. This work of yours is very important you
are rescuing the memory. This story will not become known if we do not witness our
participation. Today we have many persons who represent the movement in public
entities, occupying important positions. Even here, at this congress where we are
working the issue of the Convention, we see the importance, the representativeness and
the evolution of the movement.
I may be exaggerating but I assign a very strong political force to the
movement. I believe that our presence and representation has been fundamental. More
than that, it was out voice that prevailed. What is disclosed today in the legislation or in
the Constitution wasn't something that was handed to us by someone. The legislators
didn't give it to us as a gift. Better saying, the laws might have been written by politicians
and legislators, but were made under our guidance, our inspiration, within the spirit that
we imposed.
I have always been against a statute for persons with disabilities, and I become
more against it every day. Face to the Convention, I believe that the proposals for a
creation of a statute shouldn't be discussed anymore. With the Convention any influence
or any representativeness that any statute could have was definitively over. Besides, the
group that defends the existence of the statute doesn't have the representation that we
had at the beginning of the movement. Now we discuss a statute top down, when we
always have worked upwards, in the sense of achieving not only legislation, but even
government entities such as specific secretariats or coordination. I believe that that
happened due to the strength of the movement. There was also a strong contribution of
persons with disabilities who were professionals and worked in their specific areas:
psychologists, social workers, architects, physicians.
I remember that from the beginning in the scope of my profession, I took part in
meetings at the Ministry of Health and at the time we created the first draft of what would
become the Community Based Rehabilitation (RBC) which would be focused in working
in the community instead of bringing people to a rehabilitation center which would not be
sufficient to treat, nor is now to deal with the number of persons who need rehabilitation.
We started to create and to get involved in the space of public policies. I do not
accept and I have serious doubts about some interests of persons who are too eager
and willing to put a statute into practice. I, who took part in the movement for almost forty
years, have the knowledge that we have been very active, we got real representation,
which gives us a force that we cannot afford to lose, we have to take care of it and
create new leaderships. We have to promote more and more such representation.
Now there are other issues, we advanced much, but there are still many dark
holes that we have to fill in. I am very proud of having taken part in the movement, of
having contributed so that in Brazil presently there is a situation that seems to me to be
very favorable. When you see the situation in other Latin American countries and
Portuguese speaking Afrin countries - which is the vision we are having at this congress
- we see how much we are ahead of them in many issues.
The Independent life movement (CIV) was brought to Brazil in 1988 by
Rosangela Berman Bieler from the independent life centers she visited in the United
States.
At the time the movement coincided with a desire we (I, Rosangela and Sheila
Bastos a physiotherapist with no disabilities) had. At the time we wanted to have an
organization that would be geared more into providing services than being an entity to
fight and make political claims, because at the time we had advanced a long way with
our claims. It was at a time when in Rio the movement of persons with disabilities had
declined. The leaderships strayed from the central focus, and still today Rio is very
fragmented with different leaderships that have different goals. But now, the movement
might reappear in a different way, with the councils, state independent life centers. I am
watching closely what is going on.
When Regina brought this idea of the CIVs, it was everything we wanted at the
time. The three of us - Rosangela, Sheila and I, created CVI-Rio, and started to create a
work team in order to develop the project. There were services that have been
characterized as specific services of the independent life movement, such as the Peer
Counseling (exchange of experiences among people).
The basic module of the CVI is to strengthen the person with a disability and to
promote his/her social inclusion. The person was to have an active role in any process
that he/she would be inserted. It was necessary to abandon a medical model, in force at
the time, in which the persons would be passively placed in the action. The experts then
would decide what was good for disabled persons, how the person should walk, etc. I
remember that at the time persons with medullar lesions had mandatorily to make gait
training, even if they would drag themselves for two hours to advance half a meter. They
had to be prepared to walk whichever such gait would be.
I considered such interventions as dictatorial and presently I think it's fantastic
that a person has an option to use a wheelchair from the beginning. Today, even if you
are able to walk you may use the wheelchair for it gives more comfort and mobility. In
the past it was inadmissible to think about a wheelchair as a more comfortable element
that would give you more autonomy. The wheelchair has always been considered as a
weight, an extraordinary thing that occupies a huge space. How you - as a person could choose this situation as being the best one? Nowadays you see persons using
prosthesis and other who prefer not to use them. I always worked with rehabilitation,
even at that time, as a psychologist I saw certain cases where the institution was willing
to put a prosthesis on a 5 or 6 year old child who was already walking on the stumps and
was incredible agile, would go everywhere, played, jumped, etc. When this child
received the prosthesis on both limbs, the child would stay immobile, like robot, and
became sad. We questioned if in that specific case it wouldn't be better to leave the
prosthesis to a later date, when during adolescence the child, might opt or not for the
prosthesis.
This freedom of being able to make your options on what you want for your
body is fundamental. CVI-Rio works this particular issues giving freedom to the person to
make his/her own options and choose his/her way. We are not going to tell what is better
for a person. The person has to be aware of his/her own limitations, disabilities, etc. The
person with disability has to have instruments that favor practical day-to-day life - this is
a very new and different perspective. It is fundamental to work on this concept. As of
1988 the political movements in Rio started to loose strength. We - who had created a
very strong association, Adeferj - we transferred to CVI-Rio and focused our efforts
around this new organization. It was and is a hard work to have it survive. It is not easy
to keep an organization in reasonable action standards.
I believe that the conquests we have achieved are in line with our fight. I believe
that - with our presence - we got the adhesion of persons who have been extremely
important for the movement. We didn't build it alone. But our presence has been
important to change the minds of legislators, public entities, governments in order to
favor public policies that respect the needs of persons with disabilities.
We still have to be vigilant, mainly now, so that the Convention, that has status
of constitutional precept, is respected for it really contemplates these new ideas, this
new posture, new vision regarding persons with disabilities. I believe that the movement
still has a role. We have been acting at the legislative and executive powers. The
Convention has been prepared and approved at the United Nations and ratified by the
Brazilian government as a result of a consistent action of the National Coordination for
the Integration of Persons with Disabilities (Corde) and the National Council of the Rights
of Persons with Disabilities (Conade). There are persons with disabilities in the main
entities related to this social segment. It is very important not to lose this position we
occupy, and more and more include professionals with disabilities in all areas of
knowledge, for the issue of disability touches all areas of human activity: health,
education, transportation, leisure, sports, work, etc., and all of them have to take into
account the issues of persons with disabilities.
Within the movement where I participate from, continuity and the establishment
of new leaderships is a constant worry. We have to deal with this issue in a very serious
and objective way. But at the same time, I see new leaderships joining the movement in
a spontaneous manner. People feel moved by an action they believe to be serious and
consistent, and join us spontaneously. Today, we have the company of several persons
to join the movement and are from another generation, with different experiences and
postures. This is extremely important for the renewal of the movement. It is our
responsibility to enable new leader to assume our positions.
The Movement for Independent Life represented a very new idea in Brazil.
Presently there are 20 active CVIs. CVI Brazil is a council formed by the Brazilian CVIs
that streamlines policies and the composition of CVIs. For having national
representation, the representative of CVI-Brazil may be elected to the board of Conade,
as happened to Alexandre Baroni, from CVI-Maringá and present chairman of CVIBrazil.
The Independent Life Movement brought to Brazil a new manner of facing
disability and this viewpoint has to be well preserved by us who belong to the
movement, for today there are many people who don’t' participate from a CVI, participate
from this virtual discussion list of the Movement for an Independent Life. CVIs from
United States are autonomous, isolated and do not unite the States of the Federation.
Here, in spite of being a movement that is still being organized, and is not completely
consolidated, we have CVI-Brazil. Therefore I see a future for the movement. I hope it
remains so in order to propose projects and to inspect public policies that are activities
that belong to our movement.
Image: Newspaper Correio Brasilience, Brasília, April 20, 1980.
Black and White Picture of a woman.
“Maria Luiza from the association for the social rehabilitation” (…) Persons with Disabilities go to Figueiredo. They are going to
request curbside cutouts and buses adapted to transport persons in wheelchairs.
Maria Luiza speaks about the goals of the Association and among them, the focus of the educational and professional training, with
the aim of placement in the labor market. ”We have many plans in this sense. Here at Sarah, we have a program for that, therefore, it is
fair that I continue to carry out this role. Here we have shoemakers, receptionists, telephone operators, etc. Our work is to refer the
disabled persons to companies. The physically disabled are able to carry out any position, provided they are willing to” The vicepresident of ADF-Brasília, Benício Tavares da Cunha, says that a law is needed that would bind companies to reserve 10% of their
positions for the disabled. “This is very important and necessary. This is a way of achieving employment.
Another role of the Association is to help those who need medical treatment and locomotion devices. “We always receive requests for
hospitalization and physiotherapy sessions and do all we can to meet these needs. As to locomotion devices, we request that less
documents are to be presented, for the bureaucracy to receive these devices is very big and it takes too long”. In order to facilitate the
delivery of these devices, ADF-Brasília is requesting the Social Security Minister, Jair Soares, to install at the headquarters of Sarah
Kubitscheck a small center specifically for that purpose”. Thus the disabled will not have to go from one place to the other presenting
different documents”.
Another worry of the Association is the relationship of the disabled and his/her family. Nilton Pelegrini, also a member of the
Association says that sometimes a family may destroy a patient for not accepting him/her with naturalness. “When a person has any
type of disability, the family treats him/her as a crippled, which is not true. We have to work with the families, so that they will
understand that a physically disabled person is an able person.
CLAIMS
Among the claims that the Association of Physically Disabled persons of Brasília is making is curbside cutouts so that the disabled
will be able to get on and off sidewalks without help. Benício Tavares says that this is one of the main points being claimed. “This is
an architectural barrier, and there are also others, but we are starting with this one. Have you seen how difficult it is, how impossible,
to someone on a wheelchair to get onto the sidewalk? So why not cut out curbsides? This would make our life much easier.
Another necessary item is ramps in buildings. We cannot climb stairs with a wheelchair. But using the ramp we can get into the
buildings. There is a ramp at Conjunto Nacional (in the city of Brasília), but we can’t reach the second floor of the central bus station.
To go to the airport, movie house or theater is also difficult, for most of them have stairs. Restaurants are too narrow for wheelchairs,
elevators are small, doors are narrow, so there is a series of barriers that prevent us to circulate with more mobility”.
Another problem in Benício’s view point is buses. He is going to claim on behalf of the association to the Secretary of Public Services,
José Geraldo Maciel, that in the plan for the improvement of mass transportation, attention be given to the disabled. “A person with
disabilities who lives at the satellite towns of Brasília and works at the Pilot Plan has huge difficulties regarding transportation. Simply
there is no place in the bus for wheelchairs and it’s difficult to get on the bus. These issues have to be analyzed by the authorities.
MEETING
Brasília will hold from October 17 to 23 a meeting with all the state associations for the creation of the National Association of
Persons with Disabilities. During the meeting a document will be drafted will all claims of the disabled that will be sent to the
President of Brazil. “At the same occasion we will also host the National Games on Wheelchairs where different modalities played
such as: running, volleyball, athletics, bow and arrow, shooting, table tennis and snooker will be played. We expect around 1,500
person with disabilities to attend the event”.
Several groups are acting in satellite cities jointly with ADF-Brasília. Benício says that the disabled should look for the group
coordinators to a higher level of reintegration. The coordinators and steads of the groups are: QMN4, conj. J, house 20, Ceilândia:
coordinator – Luiza: QNM 34, conj. F. house 17. Guará II, coordinator Jaime and Quadra 1. Conj. G house 425. Gama. Coordinator
Damião.
According to Benício, the next program from ADF-Brasília is the creation of courses such as typing, English, computing and
receptionist work.
Newspaper Correio Brasiliense, April 20, 1980, Brasília/DF.
Digital Collection: Memorial da Inclusão
Donation: Maria Luiza Costa Câmera
Luiz Baggio Neto
Image: color Picture of Luiz Baggio Neto.
“The International Year of Persons with Disabilities (AIPD) was as a new beginning for persons with disabilities whose basic rights
shall be assured and whose autonomy and freedom are to be recognized. Those who were already discussing these issues had the
opportunity to increase the scope of the debate with other persons”
had polio in 1957 when Salk vaccine (developed in 1955) or Sabin vaccine
(developed in 1962) were not yet available.
I had very strong polio. I had a tetraparesis (partial inability to carry out body voluntary
movement with all limbs) and spent many months at the Clinics Hospital in the so called
"iron lung", a device that provided forced respiration.
I
My parents had a very positive attitude which was extremely positive for my
recovery. As soon that I went through the acute phase of the disease and left the hospital,
they decided to rehabilitate me. During the first years a physiotherapist from the Clinics
Hospital would make me exercise at home. Later I joined AACD which at the time was the
only rehabilitation center. There I attended elementary school and did rehabilitation until
my 20 years of age.
As every person with polio sequellae I underwent six or seven surgeries, all of them
extremely traumatic because they compromised very important phases of my life. When I
was 16, I did a spine surgery that left me in a cast and bedridden for eighteen month. Without
any other means, my only relationship with the external world was through the people who
came to see me in my room. It was a phase with many problems, because it is during the
teens that a series of important experiences important for growing up take place.
Evidently during some moment of life, all persons with disabilities go through an
emblematic experience of very severe discrimination. But in general, I didn't lack support,
friendship nor did I suffer discrimination from persons who were close to me. I didn't marry.
I joke saying that I escaped marriage twice. I don't know if it has been a good or bad
decision. One never knows how to evaluate these things. But I didn't get married nor had
children. I think this has never been a great problem.
As of 6th grade I attended private schools of the regular school network. When I
was attending the last year of high school at Colégio Objetivo at Avenida Paulista, in spite
of the requests my father did to the principal during the whole year, every day I had to
climb and go down about 20 steps being carried by friends or school peers. Sometimes it
was fun, sometimes terrible. I broke the wheelchair twice and had moments of panic.
Obviously they didn't take into account my right of being there. If they would do it today, It
would be easy, just a phone call to the police of to the Public Prosecution Service.
I graduated in Letters at the School of Philosophy, Letters and Human Sciences
(FFLCH) at the University of São Paulo (USP). I attended a good part of the course where
today is located the Residential Center, CRUSP. In this building the elevators only stopped
at an intermediate level between two floors, therefore I couldn't avoid being carried up or
down the stairs. At ECA (School of Communications and Arts at USP) I had teachers that
didn't make my life easier. Lucila Bernardete who gave an optional course of Literature
and Cinema told me there was no possibility to change the classes to the ground floor. I
ended giving up the course because I couldn't stand to wait for two hours until there would
be a sufficient number of campus employees to take me up or down. I always came late to
class and left much later than anyone else. By an irony of the destiny, after some years, I
met Lucila at a meeting for the disabled. She had suffered an accident and became
paraplegic, a very sad irony because she was intellectually wonderful and as person, she
also became my friend. In spite of having created "USP Legal" and housed the "Saci
network" (75), these problems are still experienced by persons with disabilities at the
University of São Paulo.
In 1979 I created a publishing house and entered the world of books. Later I
worked for publishing houses such as Atica, Brasiliense and Difel. In the 80's, for someone
like me, that uses half an arm, working was considered an absurd. However, after an
invitation that I never expected to receive from a very good friend, I worked as an
employee at Editoria Clube do Livro (Book Club Publishers). I gave my contribution until
the company changed its direction. In 1992 after a period dedicated to the movement of
the disabled I established a new publishing house, Nova Alexandria, which I left in 2004.
From then on, I work exclusively to the Brazilian Association of the Post-Polio Syndrome.
I started in the movement for the disabled in 1981, during the International Year
for Persons with Disabilities (AIPD) as a result of an invitation made by my friend Gilberto
Frachetta. I like to joke that in reality he is simultaneously my best friend and my worst
enemy; the best friend because he is a great companion and worst enemy because he
called me to work here.
I was a student at USP, with consolidated democratic ideas, that leftist thing,
Trotskyist, Leninist, revolutionary and believed as I still believe today that is was
fundamental to build a fairer society. With regards to disabilities, until then, I had only been
invited to clubs destined to recreation and card games. For me, it was unbearable. Then,
when Gilberto invited me to participate from a group of disabled persons, I attacked him
with four stones in hand. He explained the goals of the Movement for the Rights of
Persons with Disabilities (MDPD), created within the scope of the democratic opening and
accepted immediately.
Gilberto had an adapted car and came to pick me up at home to participate from
the MDPD monthly meetings. I discovered a large number of persons with disabilities
fighting for fundamental issues, such as accessibility and transportation, basic needs
which were not met. We shouted, fought, prepared motions and petitions. We created
groups to do the work and write the claims. That fascinated me. I got engaged and never
left the movement, unless during the periods in which I have been professionally involved.
________________________
(75 ) Saci network makes available in its site articles, interviews and analysis that bring Information in order to stimulate social
and digital inclusion, Improvement of quality of life and the exercise of citizenship by persons with disabilities)
In São Paulo, the leaders were Cândido Pinto de Melo, Rui Bianchi do Nascimento,
Lia Crespo, Ana Rita de Paula, Gilberto Frachetta, Leila Bernaba Jorge, Maria de Lourdes
Guarda, Sérgio Lisboa, José Roberto Amorim, Evaldo Doin and many others. There was also
Messias Tavares in Recife, Robinson de Carvalho in Ourinhos and Thomas Frist from "SorriBauru". There was that thing of entities of disabled and those for the disabled. Those "for" the
disabled were treated with a grain of suspicion: Oh, you are "for"… what do you want here?
"There were the people from Rio from ABBR, very engaged and a group from Rio Grande do
Sul. The nationalization of the movement was very difficult, because at the time there was no
Skype or Internet. Everything was done through the post or telephone. Intercity calls were
expensive and letters took too long. It was hard, but everyone, on his/her own way was trying
to create a platform of claims. Many of those people have already passed away, but they
have been fundamental for what the movement is today. With their disappearance,
unfortunately, a part of history was also lost.
I joined the movement in the beginning of 1981 and in October was already at the
First Brazilian Congress of Persons with Disabilities that gathered 600 participants in Recife.
That was really a dazzling thing. We ascertained in loco acute problems such as poverty and
discrimination in the families. Those supposed to give support, would discriminate. Until then,
this was something unknown to me. In Recife, this reality was unveiled in a very cruel
manner. Therefore, there was the need to create a very strong movement.
Naturally due to AIPD, someone at Coseas (Social Service Coordination at USP)
decided to carry out a census of persons with disabilities at the University. It was
something absolutely rudimentary. They would send out a questionnaire to the secretariat
of each unit, so that if the person would find someone limping or in a wheelchair would ask
if that person was disabled, and ask the gender. Evidently that was a research with a
ridiculous bias. At the time there should have been in all the Campus, about seven or eight
disabled students. But this research was sufficient reason for me, already heated by the
cauldrons of the movement, to start the establishment of a group of disabled persons at
the University.
We created the center of USP students and ended up taking the ownership of a
room that by initiative of Coseas should have some cassette players, imagine, for the blind
to listen to recorded books. The place never worked as such. On one hand there was
nobody to read and record books and on the other, the blind didn't need it. What they
needed was an architectural environment easier to move around and access to books in
Braille.
We started to work with the City Hall of the Campus, Coseas and Fundusp
(Construction Fund of the University of São Paulo) In order to guarantee accessibility to the
buildings. We were able to make some immediate interventions. Others have been
incorporated to the blue prints of future buildings of the campus. The elevator of the Letters
building is one of such examples. If today this unit has relative accessibility to persons with
disabilities, this is owed to those fighters. Among the most active participants of the USP
center I recall the today prosecutor Ricardo Fonseca and Pedro Aquino. There was also
Cristina Correia (Nia) and Admon, a journalism student that have passed away. There were
others who started to participate but soon would give up.
There were people who were very ashamed to be disabled. At that time, when one
disabled was admitted to USP it was as if he/she had left the disability behind, during the
entrance examinations. He/she had become an angel and would say: "OK I reached this
place, I am not disabled anymore, nothing will tie me up" I clearly remember that I asked
some persons to know about access conditions and they would deny any difficulty, when I
insisted: "but don't you have problems moving around USP using crutches or a wheelchair?
"The person already leaving would say: "I don't have any problems" Evidently that person
considered being questioned an offense.
Between 1986 and 1989 I presented at Radio USP FM a weekly program on
persons with disabilities. Rui Bianchi do Nascimento, a friend and also a participant of the
movement was the co-producer and often substituted me. I believed that we could not treat
the issue of persons with disabilities in that program, at that time in a rigid and academic
manner running the risk of increasing the antipathy and the separation between us and the
society; therefore the program was very irreverent, ironic and joyful. I remember out opening
program where the vignette was the music "Inútil" (Useless) from the group "Ultraje a Rigor"
that said: " We don't know how to vote, we don't know how to work, we don’t' know…". It
was a very cool program, we had a steady audience. The point is that I was not afraid of
mentioning the words "crippled", "leaded", etc., because that was the way a large part of the
population knew and made reference to persons with disabilities.
Looking back, I see it really seemed a strange program. I wizened up a lot with this
experience. From the personal view point, it was a fabulous gain. I could reflect only ideas,
my participation in the movement of persons with disabilities and the directions this
movement should take. It was when I felt that we had to consolidate a much closer dialogue
with the State, mainly due to the Constitution that had just been enacted. Also we had to
maintain our fighting attitude that today has almost disappeared.
This has been a very productive time, the heroic phase of the movement. We
took part in discussions with the Brazilian Technical Standards Association (ABNT) to
prepare the first standard on accessibility, NBR 9050. At that time we lacked elements to
structure the issues of accessibility and transportation in Brazil. As a parameter we only
had a few regional standards from the United States. ADA (American with Disability Act)
(76) hadn't been enacted, and this is a law we should have here as well.
One of those moments when I had an intense participation was when we started
a dialogue with the São Paulo Subway Company (Metro). We talked to a person who
proudly showed he had his subway professional document with the number 2. At one of
our meetings with 30 or 40 persons he categorically stated that the company was not
foreseeing the presence of disabled persons at the stations or trains, because someone
on a wheelchair would occupy the space of two or three standing persons. Besides, in his
opinion, the boarding and disembarking of such person would naturally be very slow and
the delays would shadow the image of efficiency of the company. Obviously he left the
meeting being "stoned" by all attendants.
___________________________
76. The Federal Americans with Disabilities Act (ADA) was signed on July 26, 1990 by President George H. W. Bush.
ADA represents for persons with disabilities - the same what the federal law that abolished racial segregation in 1964
means for Afro-Americans.
We continued to request solutions from the subway company and ended up
having access to the blueprints of the North-South line, which is the most problematic one.
We found out that one of the architects, Roberto Mac Fadden has been President of
Emurb (Municipal Urbanization Company) and had foreseen elevators in several stations,
mainly on the East-West line. When the Metro company refused to implement the
equipment, he suggested that the designed spaces should be used as dumb-waiters or
cargo elevators. Therefore, if no one filled the holes, they must still be there. This was the
type of discussions we had.
I remember that on a 21st of September, date chosen by the movement to
become the National Day of Fight of Persons with Disabilities, we blocked the Sé subway
station. There were no sufficient security personnel to help to transport simultaneously 30
wheelchairs downstairs. Every safety employee was displaced to help us. The subway
system literally stopped. To worsen the image of the company, an accident occurred with
a disabled young woman.
The debates to include our claims during the meetings of the Constituent
Assemblies also were fundamental, although without an objective participation because
we didn't meet congressmen, but we were able to present our claims to them through the
political parties, and most of all we made noise, and pressed the press to have the claims
included.
With the Constitution of 1988, Brazil gave a giant leap. From the Sahara that
Brazil was to the disabled, we jumped to the recognition of some basic rights. After the
Constitution was enacted came the surprise of the society: "Gee, but these guys really
have to take buses? This is absurd! How will they do it? We put a lift? We lower the bus?
This became a long discussion. Today we only don't have better conditions to the
country's lack of shame.
I was elected twice as the President of the Municipal Council for Persons with
Disabilities (CMPD), created during the term of Mayor Liusa Erundina by Law 11.315 of
December 21st, 1992. Gilberto Fachetta has been the first president. Although that was a
quite democratic and open government, that created popular participation councils to deal
with public policies, nothing was achieved without fights. We had lunch with the secretary and
would attack him in the afternoon. In the morning we went to the press do accuse CMTC
(Municipal Bus Transportation Company) of not having a dialogue with us and on the next
day the company had prepared a bus for us to inaugurate.
Cida Fukai, Vera Dana nad Silvana Cambiaghi had a fundamental participation in
the CMPD's group on architectural barriers. These persons created with the Housing
Secretariat a Building Code for the city of São Paulo that was absolutely accessible. With
the support of the Housing Secretary at the time, Emilia Maricato, it was possible to really
bring a base of accessibility, of inclusion of the disabled in the city. São Paulo would be a
paradise if it had really implemented and improved that code, without corruption and
deceits.
There have been other very positive initiatives. For instance, even without an
adequate legislation, Contru (Department for the Control and Use of Real Estate
Properties) helped us to demand accessibility in movie houses, restaurants and other
areas destined for public use. In São Paulo, the first place to be designed with accessibility
was Cine Astor, opened in 1961 at the Conjunto Nacional Building on Avenida Paulista, of
sweet memory. Contru didn't anything else than blackmailing them. They threatened to
give them a heavy fine if they wouldn't place six areas for wheelchairs, a ramp, accessible
bathrooms, etc. With CMTC we established the basic accessibility standards and created
a project for all buses, but when Mayor Paulo Maluf (mayor of São Paulo from 1993 to
1997) extinguished CMTC (77) things have changed and we are still fighting. Although
there have been many discussions, CMPD was quite efficient at that time. In essence the
councils give their message. Presently I do not attend council meetings and I am not
aware who attends the meetings.
Since the very beginning until today, the claims continue to be the same as they
were and continue to be essential: inclusive education (I wish it would be less theoretical
and more objective than it is today); unrestricted accessibility, i.e., the universal design
should be mandatory for everything. Health for all - and the State is to assume the issue of
rehabilitation as its duty, and not something hired and mediated by other interests that are
not those of the population, as is being done today. Accessible transportation for everyone
without 1%, 10%, 5% of the fleet being accessible. Every bus and subway station has to
be accessible. Abroad one perceives that dignity is not something you borrow, but
something that the society acknowledges. In Brazil, in general, there is no dignity for
people in general, disabled or not disabled. There is no dignity, the Brazilian people are
not honorable - we are victims of our history.
Recently I've been to Miami and saw two things that moved me. The first one is
the fact that all buses are accessible. The bus stops, lowers, everyone waits for you to get
into the bus. Inside the bus, a recording says: requested stop, corner of street x with street
y. The same message appears in writing. When it stops at the bus stop the recording
says: "bus No. 23 goes to Boulevard so and so" - this means total accessibility in public
transportation. This is citizenship. The second thing that moved me is that all buses have
an emblem above one seat stating "This seat is dedicated to Rosa Parks", who was the
first Afro-American who refused to give her seat on a bus to a Caucasian person on
December 1st, 1955 in the city of Montgomery, state of Alabama, which was the beginning
of the end of the North-American racist system.
In Brazil, buses have symbols on the preferential seats for the elderly, pregnant
women and disabled, i.e., those who are in "disadvantage". Only the problematic have
access to those seats. It's very different from having conquered the acknowledgment to
citizenship that we have to attain not only as disabled but as Brazilians.
________________________
77. Paulo Maluf was mayor of São Paulo between 1993 and 1997.
There are also other fundamental issues as the right to leisure, entertainment,
sexuality and love. There are many disabled persons living a situation of absolute
discrimination. For instance, there is never the image of a disabled person associated to a
love relationship in ads. Always it's the heroe overcoming absurd things, a giant task,
bigger than him, or it is a nice child with Down syndrome - this just to mention the media.
But love never is naturally associated to the disabled.
The disabled person is still seen as inapt. There are measures and laws to meet
their needs, but the disabled are never included in the debate. The person is never seen
as having auto-determination, like the native Brazilians that are considered to be
imbeciles, the elderly are decrepit, the disabled are inapt, therefore it is necessary to "take
care of them" and offer them something beneficial, a comfort so that life won't be so hard
and painful…"
When from the 90's on people started to mention "social inclusion" I asked: "but
you are not talking about full and equal participation?" people would answer: "Nooooooo,
according to so and so, inclusion means that the society has to change to meet the needs
of the disabled and not the contrary".
Well, "Full and Equal Participation" has been the motto of the International Year
and is perfectly reflected in the movement for inclusion. But perhaps I am ignorant and
don't know the subtleties of the use of the expression. The word "inclusion" is nice, but
here seated on my chair, I tell you it's the same old talk.
Our claims have and continue to be total access to everything to which a person
who lives in society is entitled to, as well as dignity. I believe that the conquests are not at
the level of the claims and the fights we fought. We live a fundamental problem in the
Brazilian society. I don't know if it is the result of our Latin origin or if there is a different
cause, perhaps it's the curse of Christianity that is deep rooted in our culture. Perhaps if we
would be more Hellenistic, we would be happier. But I believe that only when the issue of
tutelage ends, we will really be able to conquer our autonomy and be seen as peers and not
pariahs.
In spite of the above, it's impossible that nothing has improved since 1980. Things
have improved. People started to see, that there are rights which are assured. For instance,
today there are parking spaces allotted to the disabled, those who don't respect the spaces
are considered "evil". The child doesn't bring good grades from school, but there is a ramp.
These things have been conquests. We cannot assume a radical position and state that the
fight was in vain. We had important conquests. The disabled are more present. We can see
it. It took me a long time to buy a motorized chair because until a short time ago it would be
useless for there was no access to the more usual places. Today restaurants, hotels and
movie houses mandatorily have to have guaranteed accessibility.
It is obvious that it doesn't work if you have accessibility at Paulista Avenue, but at
Jardim Umarozal, Southern part of the city of São Paulo, there is a health center where the
doctor doesn't have a clue of what is polio, for instance. We still need public rehabilitation
centers close to where the disabled live. Many important issues are still to be conquered, but
much has already been accomplished, the environment is slightly more favorable. It's not
strange anymore for you to say: "look, there's a ramp missing here" and have the other
person perceive that you are right.
I feel privileged for the fact that today I am heading an organization such as
Brazilian Post Poliomyelitis Syndrome. It is very important to continue fighting because
polio is a disease that has been eradicated from many countries, but we are still here alive
and suffering the consequences of the impairment of the sequellae of polio and the
inherent complications of old age. I see that people are interested and active. The society
is responding quicker to the needs of the disabled.
Our congressmen evidently hear what they want to hear, but in general I feel
there is more permeability in the approximation with the State. In what concerns the issue
of the Post-Polio Syndrome - a novelty in Brazil, as in other parts of the world, we were
able to establish some dialogues with Social Security. The Public Attorney's Office is
active and helps us out when things get tough. We have some access to the Health
Secretariat In spite of the famous "working groups" that are just ways of not doing
something. Even so, we perceive that there is the possibility of dialogue and that the
pressure on the society has a more immediate result. People perhaps do not notice, but
there is a wider opening, perhaps we have to adjust the focus, centralize forces and act
with more impact.
From the 90's on, the movement became weaker in Brazil. The preparation of
new leaders has always been a problem. Parameters for the next generation have not
been created. Very few people were already leaders when the movement of the disabled
started, exception made for Cândido Pinto de Mello and Gilberto Frachetta, who came
from the students and political movements. Other leaders were created during the heroic
phase. When I say it I don't mean to say "look how wonderful it is to be a hero!" In reality it
was much more an attitude of "let's fight and see what comes out of it". The discussions
were much fiercer, today everything is much lighter.
The International Year of persons with Disabilities (AIPD) was like a rebirth for the
personalities of persons with disabilities whose basic rights are to be assured and whose
autonomy and identity are to be acknowledged. Those who were already discussing these
issues had the opportunity to widen the debate by talking to others. Personally, 1981 was the
year in which I realized I didn't live with other disabled persons, and decided to engage
myself in the movement for the rights of the disabled.
Brazil has problems with history, mainly the recent history. One doesn't have to
yearn for bygone days, but have to know what has already been made in order to do
something new. Besides redeeming the past, we have to focus on the way ahead of us
therefore, the event to celebrate the 25th anniversary of the AIPD was fabulous!
We reviewed the history of the movement, the colleagues and our own path.
Thins that one leaves behind but in reality have contributed for our own personality. One
has yet to know in which measure that redemption was only an acknowledgement or if it
pushed forward some actions that came next, and will inspire actions yet to come.
I agree with Ricardo Fonseca (first blind judge in Brazil) when he states that we
should revise and think about how to consolidate our rights, for many of them are very fragile
in legal terms. It's OK that the Constitution states that education is basic for everyone. But is
it included in someone's educational government plan that education is to be inclusive? Who
will guarantee that next year there will not be enacted a "dispersive education" or any other
rubbish of the style? We have to widen the internal dialogue and also try to establish contact
with organizations In Latin America that face the same difficulties. Argentina with an
economy which is working more or less is an abyss for the disabled.
We have to create solid instruments to guarantee our rights. Presently we don't
have to discuss with the Executive power the implementation of this or that program. We
have to consolidate the legal aspects of our rights in order not to have further discussions.
We have to root our feats. This is the present perspective.
Image: Face of Bulletin No. 1 of the Movement for the Rights of Persons with Disabilities – MDPD. It contains the stamp and symbol
of the UN for the AIPD. [Face] Bulletin 1981, year 1, No. 1 MDPD, Rua Joaquin Antunes 611/53 05415 São Paulo – SP. Phones:
284-5493 and 65-6739.
Support and stimulus to the Development of AIPD – State Committee. AIPD – Decree No. 16,742 from 03/05/1981 from the
Governor of the State of São Paulo, created with the Office of the Governor the Committee for the Support and Fostering of the
Development of AIPD and will be composed by representatives of the Secretariats of Administration, Information and
Communications, Education, Social Promotion, Health, labor Relations and transportation, besides Ivan Ferraretto (AACD), José
Geraldo Bueno (DERDIC), Stanislau Krynski (APAE), Mrs. Dorina de Gouveia Nowill (Foundation for Books for the Blind of
Brazil), José Rodrigues Louzã (HC.FMUSP), Edmundo Pinto Fonseca (Foundation Center for Oncologic Researches), Luis Celso
M.Moura (CEDRIS), José Evaldo de M. Doin (MDPD). This committee will be chaired by Mr. Calim Eid (Secretary of the
Government) and the secretary will be Otto Marques Silva (HC.FMUSP)
[Right Column] We make the AIPD. MDPD has prepared a program with monthly round tables approaching issues of interest of the
disabled, with the aim of creating awareness, discuss and point solutions, commit the State and the Society to the needs of the
disabled, and most of all make the disabled fight for their legitimate rights.
Round Tables: Day/Month – Issue: April 25th – Urban Spaces (internal/external); May 23rd – Work; June 27th – Transportation
(individual/collective); July 18th – Medical care, Rehabilitation and Auxiliary Equipment; August 29 th – Legislation: September 19th –
Leisure and Sports; October 17th – Education; November 21st – Human and Social Relations. All round tables with be held at Colégio
Anchietanum, at Rua Apinagés 2033, Sumaré, starting at 01:00 p.m.
Pay your fees: minimum fee for an Entity= Cr$ 500.00; Individual = Cr$ 10.00
Calendar of meetings: March 21st, FMU; April 11th – FMU; May 9th – FMU; October 10th – FMU; November 14th – FMU; December
5th – Anchietanum, where FMU – United Metropolitan Colleges, Anchietanum – Colégio Anchietanum.
Image. Continuation – Back of Bulletin No. 1
[Left column] Now we have a national guard – During the IV National Assembly of the Christian Fraternity for the Sick and Disabled
(FCD), carried out in São Bernardo do Campo from January 18 th – 25th of 1981, Maria de Lourdes Guarda was elected national
coordinator; in the same list of candidates, Célia Camargo Leão was elected vice-coordinator and Father Geraldo M.L. Nascimento
was elected general councilor.
MDPD in the hinterlands – Carried out in Baurú on February 28, the MDPD meeting with 70 attendants representing among other
cities: Marília, Baurú, Ourinhos, Jacarezinho, Lins, Rio Claro, Andradina and Pederneiras. The Program Letter of the MDPD and how
to increase the reach of the movement in the interior of the states were the discussed issues. The movement coordination was
represented by Luis Celso and Robson.
MDPD makes justice – The legal committee of the Movement is being created, having as coordinator Leila Barnaba Jorge. One of the
first measures taken was to send a letter to the Brazilian Post Office (EBCT) demanding clarification about a disabled person (with
polio sequellae) from Araçoiaba da Serra who was not admitted to work, even having passed the test. The interesting point is that
EBCT is launching a stamp to celebrate AIPD.
We received: the “Rehabilitation” magazine, edited in Rio de Janeiro, a good publication with issues of general interest and different
News; Letter from the coordinator of the FCD center of the city of Marília, Olympia Salete Rodrigues with very timely comments on
MDPD and its monthly meetings; The magazine “Missions” that has as collaborator Father Hilário. The State of Espírito Santo got in
touch with us. We received from their group the program prepared for AIPD, stating that the opening of the International Year will be
on March 20, 1981 at 5:00 p.m. in Vitória – ES.
[Right Column] Fill the Neighborhood – Bexiga neighborhood will host on April 11 and 12 a party to celebrate the International Year
of Persons with Disabilities (AIPD) , this will be an opportunity to that community to have a day of integrated leisure activities, for
this party is not being prepared for the disabled, but with the disabled. There will be games and entertainments to be played by
disabled and not disabled persons at an equal level. The entities interested in taking part shall get in touch with DPD.
Integrated Camping – On March 28 and 29, NID – Center for the Integration of the Disabled) with promote a camping at the foot of
Pico do Jaraguá, with the participation of disabled and non-disabled persons. This experience will be object of a lecture that NID will
present during the International Congress on Leisure and Development to be carried out in September of this year, in São Paulo.
Stickers – MDPD received from AIDE (Association for the Integration of Persons with Disabilities) as cooperation, 1,000 (one
thousand) stickers to be sold, and the amount gathered from the sale will remain with the Movement.
Ants and Elephants: The Movement for the Rights of the Disabled had a meeting with the winner of Peace Nobel Prize, Adolfo Perez
Esquivel, on February 26. With an allegory on the strength of the union of small ants against the huge size of elephants, which shows
the importance of the understanding that should exist among all entities for the disabled, in spite of the difference, in the joint work
and for claiming the rights of persons with disabilities in the society.
Super 8: Disabled in action – AIDE – Association for the Integration of the Disabled – and MDPD are promoting with RTC – Cultura
Radio and TV – the I National Contest of Super 8 movies on persons with disabilities within the Super 8 Action program.
[Footnote of the Bulletin: Persons with disabilities do not claim benefits that have features of gifts, privileges or concessions, but
claim what they have right to as citizens of a country and whole human beings – MDPD Program Letter.
Inscription: Digital Collection of Memorial da Incusão.
Donation: Romeu Sassaki.
Image: Newspaper Folha de São Paulo, with handwritten date: 01/05/1981. Folha de São Paulo, a newspaper at the service of Brazil.
An issue of rights. At least in what concerns the so called “international years” promoted by the UN are perfectly useless. Or will
someone believe that we gave a mere step in the solution of the problems of minors during the International Year of the Child?
Therefore, it is with justified skepticism that we wait what will happen in 1981, proclaimed as the International Year of Persons with
Disabilities. However, housing hopes is good. It may be that the national conscience will really wake up to the situation of a large part
of our population, set at the margin of the society due to physical or mental disabilities.
The least to wish from the rulers of the country would be the revision of the legislation that gives the right of work to the disabled.
There are scattered provisions, almost always inspired in the best of intentions, but not always able to overcome the invincible
bureaucratic hurdles and prejudices. See if someone, in a wheelchair takes office in a public position, even if this position was
conquered by means of tests. There will be so huge barriers against the person that even if his/her disability will not prevent the
person of carrying out certain types of work – there will be needed an almost super human strength of will to overcame those barriers.
In this sense, what is needed is a changing of minds; bureaucrats from second or third tiers should become aware that , provided they
don’t want to help , they should not make life harder to those who partially disabled who even so do not give up to passivity and do
not submit to the prevailing establishment.
The claims of the disabled include architectural changes in the cities in order to facilitate their locomotion, changes in the legislation
regarding imported devices and several other things. The essential is that the situation of millions of Brazilians be faced not under
paternalistic or sentimental aspects. They don’t need charity nor are they claiming special favors: in short they are claiming for an
opportunity to show that they can be useful to the society at a moment when the society claims the participation of everyone.
Along the present year we will see if the UN proclamation will sensitize Brazilians about a problem with deep human and social
meaning. Millions of persons can escape complete marginalization if the society, as a whole, understands their wishes: no massive
investments, no big campaigns and much less cheap emotions will be needed. On behalf of the disabled we only ask that their rights
be respected, and that they should receive the same opportunities as any other human being deserves. E.M.N.
Inscription: Newspaper Folha de S.Paulo, January 05, 1981. Digital collection Memorial da Inclusão. Donation: Romeu Sassaki.
Image: Newspaper O Estado de S. Paulo, October 25, 1981. From the Recife Branch. Congress starts in Recife. With the attendance of
about 600 persons with disabilities, starts tomorrow in Recife, the 1st Brazilian Congress of persons with Disabilities which will have
a political bias and will also gather authorities and scientists such as Professor Nelson Chaves, who even being hospitalized, confirmed
his presence.
One of the members of the National Executive Committee of the Entities of Persons with Disabilities, Messias Tavares de Souza was
emphatic saying that the participation of the Nutritionist from Pernambuco, Nelson Chaves is an homage to his work on behalf of the
mentally disabled, for the lack of food ingestion causes severe mental lesions, ascertained by numerous works of the expert.
Until yesterday the congress had not confirmed the participation of delegations from the states of Mato Gross, Sergipe, Maranhão and
the territories. The Congress will be opened by Governor Marco Maciel and minister Rubem Ludwig from Education at the
Pernambuco Convention Center. At the meeting that will extend until the 30 th, the disabled will discuss not only the scientific and
technical aspects, but as Messias Tavares de Souza said: “the debate will be very political”.
“We consider this congress a political meeting, for it will be a way to congregate the disabled. This is why we are strongly motivated,
and for 1982 with the end of the Year of the Persons with Disability, we intend to become a pressure group, a political group able to
claim changes in the service to the disabled, rehabilitation programs and in the fight against environmental and social barriers. This
congress may inclusively determine the establishment of a federation.
Inscription: Newspaper O Estado de S. Paulo, October 25, 1981.
Digital collection Memorial da Inclusão.
Donation: Romeu Sassaki.
Sandra Maria de Sá Brito Maciel
Image: color picture of Sandra Maria de Sá Brito Maciel.
"Between 1981 and 1982, Adeva and other entities that were being created at the time, motivated by the International Year of
persons with Disabilities, fought for the establishment of municipal and state councils that would promote the Integration of
the disabled, however in what concerns the opening of the labor market to the disabled, nothing was happening .
y name is Sandra Maria de Sá Brito Maciel. I was born of October 7, 1946 in Porto
Alegre, state of Rio Grande do Sul. My parents also were born there and happen to
be cousins. They already lived in São Paulo when my mother got pregnant and went
back to the South, so that I, who am the third daughter, would be born there. When I was
4 months old we all returned to São Paulo.
M
I was born with 53 centimeters, a large baby. I was born with subnormal sight,
5%, a problem diagnosed correctly when I was over 2 years of age. Until then, my
parents believed I was completely blind as the physicians had told them at the first visits.
Since I was 2 years old, I started to suffer from frequent broken bones - I would
break them up to three times a year. I was diagnosed with congenital bone
decalcification, a very little known disease at the time. Some doctors believed that the
cause could be some disease that my mother might have had during her pregnancy.
Others thought it was due to the fact that my parents were cousins. The point is that I only
started to walk more firmly at 5 years of age.
My mother had difficulties accepting all of this. The first daughter died right after
her birth, the second child, a boy, didn't have any problems. Then I was born, later my
next sister was born with mental and visual disability; next the fourth and fifth daughter
were born normal.
The fact that I didn't walk was so disgusting to my mother, that when she talked
about me to others, she would subtract a year from my age. I discovered this much later,
at 24! It may seem unimportant, but when I was told about this fact, I was very sad, I
understood that there was prejudice and rejection behind her story.
This story pictures well the type of reaction that each family may have with
regards to the presence of a disabled person at home. And if we think well, nobody is
prepared to face disability. I believe that when we are able to analyze the situation,
instead of judging them, we should disregard some of the behaviors and thank God for
the things we received and others haven't.
Thus, perhaps the best way is to try to see what they did right and fix by
ourselves whatever they did wrong. The knowledge they had was the result of a culture,
still prevailing, that prevented them to deal with the differences and generated many
prejudices regarding disabilities.
Still today we see families taking care of physically disabled persons as if they
were completely mentally disabled! There are cases of adults with visual impairment, who
are intelligent but they parents besides not teaching them anything and not giving them
independence, do everything for them: baths, mouth feeding, believing that they have to
clean them when they go to the toilet, etc.
I speak about teenagers or large and strong men whose mothers run when they
leave the toilet to close their pants zipper - things that make me indignant. When I see
these scenes I think: "In spite of the fact that my parents overprotected me, thank God,
they didn't do such things"
Conquering my independence was something that took very long. In the first
years, the problem was the bone fractures. They didn't know what to do with me in terms
of schooling they were afraid other children might bump into me and make me fall. This
lasted until I was 11!
Finally they decided to go to Dorina Nowill Foundation to ask the social worker to
help them, but she also didn't know what to do. The institution basically served the
visually disabled. There was even a class for the visually disabled with mental problems,
but they had never dealt with someone who had bone fragility.
As the employees of the foundation didn't find a different solution, they advised
my parents to place me in a classroom specialized in double disability. There I would be
in a small group, it wouldn't be so dangerous for someone to overthrow me, because the
students were not children. Unfortunately they didn't realize how complicated it was to put
a child with normal intelligence in a classroom with mentally disabled persons, and to top
it, adults!
Due to my timidity and lack of self-assurance, I didn't have the courage to ask
what was going on. I had to discover by myself. I started to compare myself to other class
mates and then I noted the mental disability. It was then that I started asking myself if I
was as mentally disabled as they were. Although I was a child, I started to observe
everything around me and make auto-analysis - until I realized that I was different from
them, I had no mental disability for "if I am observing with all these worries and are
observing everything, I am not equal to them"; therefore I say that this was like the saying
"I think, therefore I exist"
The teachers were so used to those students who were mentally disabled that
everything had to be done several times, for they needed repetition to be able to learn. I
was obliged to do the same. Every student who did everything well done received
praise, but the point was that I knew I wasn't doing any great feat, and this would not
motivate me.
During one and a half year I had three consecutive bone fractures that tied me
home for some time. I would stop attending classes due to the fractures and would
resume after they healed. When I went back I was still not walking and had to be carried
by my father who took me and picked me up from school. Obviously this situation worried
my parents thinking what they should do with me.
I always remember an episode that shows how much my shyness was worrying.
It happened after I had recovered from one of the fractures. I had returned to school, but
only walked hand-in-hand with one of the teachers. Once I went to the mass hall for a
snack with them. When we were going back to the classroom, the person left me in the
corridor saying that would pick up her purse and left. Soon later, a visually Impaired
person started to walk into my direction. I didn't walk alone but I knew that if I wouldn't say
something, he wouldn't see me and would overthrow me; it would be another fracture,
pain, etc., even so I remained quiet. The teacher saw the scene and came back shouting:
"Why didn't you shout, and I didn't answer. I remained silent due to lack of self-assurance
and fear. When I say I am shy and people laugh, I tell them this story so they understand
how I behaved at the time.
In 1958 I was referred to a recently opened special class at Grupo Escolar
Professor Pedro Voss, in the same neighborhood. This classroom served the visually
impaired.
I think it is very interesting that nowadays people speak so much about
"inclusion". I believe that the real Inclusion was the one that existed at that time. The
student attended a normal class and had all the support from the special resources
classroom. Nowadays on behalf of "inclusion" the special resources classes are being
closed. It is considered "inclusion" to throw the student in a regular class with practically
no assistance. Besides, the courses to train teachers specialized in each area of disability
are dwindling!
Special education is evolving backwards. This is very difficult. It is obvious that
the student can be assigned to a regular classroom, but the student has to have a special
support, as is made in other countries. In United States it is usual to have the specialized
teachers stay in a regular classroom giving all the support to the disabled.
For instance, in the case of the visually disabled, it is necessary to convert all the
subjects, exercises and tests into Braille. Later the tests have to be transcribed so that
the regular teacher can correct the tests. When this class opened at Pedro Voss, the
specialized teacher assigned to that classroom was a professional starting her career, but
was a wonderful person. Those about whom we say that is a born psychologist, one who
does things without a clue of how is doing everything the right way
I was sent to a regular class at this school. The Foundation assigned me to the
2nd year of elementary school with the assistance of a specialized teacher called Ms.
Rute. I knew how to read, but didn't know how to write. I don't know if it was due to the
lack of motivation, or because the same method was applied to the mentally disabled. I
was an excellent student in the other subjects.
But when placed in a regular class, I wasn't able to follow my peers because I
didn't know how to write. The regular teacher didn't give me any attention - it seemed
she didn't want to have a disabled student in her class. It was the specialized teacher
who found out my needs.
In mid-term, she decided to stay with me in her room for a period. I would do
the second year with her and stay the other period In the regular class as listener to
make friendships and live with other children. I stayed half a day in the regular class
trying to follow-up and do things helped by my friends; the other half of the day I would
go to the other room receiving the lesson and a heap of homework to do at home. The
teacher would say: "If Sandra does it, it is because she is able to do more"; in
practically six month she taught me to write. I did the first and second years of
elementary school mainly focused on writing.
In the third year she tried to place me with a teacher she believed would give me
more attention and was more experienced. It was good because some of the friends I had
from the second years were in that class, inclusively my sister.
My sister started her studies very early; she started elementary school at the age
of 5. We were at the same grade, although at the time I was already 13. We were also
together during second year. She was approved more easily that I was, because she
knew how to write well and I didn't. In the third year I got the first place of the class with
the highest grades.
At that time, she and I had the same height, although she was 8 and I was 13. It
was then when I found out I was not growing. I talked with my parents who took me to the
doctor. The diagnosis was that I would not grow anymore. Any treatment I would make
would only make me fat. At that time nobody spoke about growth hormones. My height
would be around 1.20 meter.
I continued to be the first student in the class during third and fourth grades. It
was in that year that I won a medal from Governor Carvalho Pinto who was given to the
best student of each school. In order to be released from attending the 5th grade, I
started studying mornings and afternoons. One period in the regular class and the second
in the special resources room for a kind of preparatory tests called "admission test" to 6th
grade. The intention was to study at Caetano de Campos School, considered as one of
the best state schools at the time. At that time it was a very demanding school and there
were many candidates taking the test. I took the test and passed. I attended at Caetano
de Campos from 6th to 8th grade, as well as high school.
I was still very introverted, even at home. On my street, I walked by myself
because it was located on a cul-de-sac and there was no movement. I was always with
my sister or my parents, i.e., I was always with someone. When I attended Caetano de
Campos' school I had no contact with the visually disabled, therefore I had no idea that I
could walk alone. In this aspect I've been overprotected by my family. At home, regarding
house chores, my mother never thought I would be able to do something, she would send
my younger sisters do the chores. She would never let me get close to the oven, although
she taught me to make cakes that I took to the school.
I don't know if my sisters got angry with the situation. I believe that the situation
caused many problems for one of my sisters, who felt she was being used. My mother
didn't like to teach people, she would merely observe and if someone did something
wrong she thought the person would never be able to do such thing right. She would not
stimulate, but to the contrary, she would end up having everyone unsecure when she said
that things would fall or that we were going to overturn everything.
At school it was very different, there was no such overprotection. It was a very
good relationship, because as I got good grades, learning came very easy to me, the
friendships were very reciprocal. The girls would not avoid me. They helped me with my
difficulties and we used to share things, we would study mathematics together, because it
was really easy for me.
At one of these second semester tests at the third or fourth grade, in which
teachers changed classrooms, we received someone who wasn't acquainted with our
class, and when she saw next to me two or three friends and my sister, everyone talking
to me, she thought they were helping me, dictating the subject or explaining something
written on the blackboard. When our teacher saw the grades, I got a ten, while those
around me got 9.5 and the rest of the students got 8.0 or less. She only looked at us and
asked: "what happened here?" and we all answered: "Nothing, we don’t have a clue".
And the girls eyed me angrily wanting to know why I got ten and they got 9.5, as
if I had done something on purpose, not teaching them something. But we soon found out
what happened. They doubted some answers I gave them and decided to do it differently.
All these experiences have been good because besides helping me make
friendships, they made me feel that there was a reciprocal relationship. I was not getting
help because I was "different". I always ended becoming friends with the best students in
class, because these were the ones more willing to help. It has been so since elementary
school.
It is interesting that on my first day at school, I said that I was there as a listener,
but the teacher told the girl sitting next to me that she should help me. A long time later
the girl told me that she was very upset that she would have to help me, as she didn't
know the reason, and why the teacher had chosen just her; we're friend to this day, I am
the godmother of her daughter and we celebrated the 50th anniversary of our friendship! I
also had two friends that I met at secondary school and it was the same at college, I still
have friends from that time.
As Caetano de Campos was a wonderful school, much better that many private
schools, I took a two month refreshment course , made my entrance examinations and
was approved to the University of São Paulo in 1968 at 22 years of age, while my
colleagues were 17 or 18; this because I started school at 11 or 12.
I was in doubt if I should study Psychology or Law. I always thought my area was
law, and so did my family; and then I don't know why I started to think I wanted
psychology. As I had already studied Latin, at the last year of high school I decided to
take Mathematics. As I thought I was not well prepared for Mathematics, I didn't do the
entrance examinations for Psychology, but for Social Sciences and Oriental Languages at
USP and Law at PUC (Pontifical Catholic University) because there was no mathematics.
I passed the three exams. Me, who made the test for Oriental languages because I
feared I wouldn't be approved anywhere because I believed that due t the fact that I had
started my studies later and due to the facts my parents supported me, I had the duty to
enter some School. I did the test for Oriental languages because I believed that there
would be fewer candidates, and I chose Russian without knowing it was the most popular
course with the higher number of candidates. In spite of being much younger, my
colleagues also had the same worry regarding entering the University,
I have never flunked a year. I had the same good results in secondary school as
in primary school. In the first two grades of secondary I was still able to be in first of
second place in my class; later it became more difficult because there were some
Mathematic teachers who put the subject on the blackboard and that what is, they couldn't
care less about me, didn't give any explanations. I had to study practically alone. This was
a bit of a problem in 3rd and 4th grade, but I always finished without having to take the
final exam, and the average was 8.0!. It was an excellent course.
Even after entering the different schools, I was in doubt of what I should do. I
started classes at USP and PUC do decide once for all. It was when I decided the course
I'd like most would be Social Sciences, but at the same time, I felt that I had to read a lot,
that it would be complicated, I sensed that the rejection would be bigger. It seems that the
group that considered itself as the most intellectual was the one that showed most
rejection. They eyed me in such a way that I felt like a Martian!.
In this sense the class at PUC was more accessible and the persons more
friendly. I felt the course wouldn't be so hard and I would get much more help from my
colleagues to be able to follow the classes. After six months attending both courses - one
at Rua Maria Antonio and the other at Rua Monte Alegre, the USP course was moved to
Cidade Universitária (University City) I decided for Law at PUC.
I really had much help from my colleagues and was able to have a good course
grace to them. I say it because there was no material in Braille at that time - much less
internet - but I had the colleagues. The busiest ones would read aloud and recorded for
me all books and all subjects into those tape recorders that used tapes with 6 hours of
recording time.
Sometimes I would spend the night hearing the recordings, mainly on the eve of
tests. I also would go to a colleague’s house or she would come home, so we could study
together. Other colleagues who studied with me also helped, but just one friend would
record the entire course material.
I attended a two month refreshment course before the entrance examination, at
Equipe, I had wonderful teachers. I loved that period: those two months seemed like
several years. I believe that it was during that period that I started to lose some of my
shyness, due to the contact with students and teachers.
There was a group of boys and girls who preferred to study together, perhaps it
was because of them that I started to lose my shyness. In the first year of college I
already took part in those student movements in 1969, 1970. I believe that being involved
in discussions and having contact with boys helped me.
Another interesting point is that at the time I was at Caetano de Campos, I would
even meet some visually disabled persons, but never had a closer relationship with them,
this closer contact would only take place at my first year at the University, because my
sister continued at school, doing her classic secondary school studies at the visually
disabled class. This sister started school with me, but then she was held back for two
years, because she couldn't go to secondary school at the age of 9, so she had to repeat
4th grade and attended 5th grade as well at Caetano de Campos.
She would leave her school with her visually impaired colleagues, would come to
the University to pick me up and we would take home those who lived near us. As we
exchanged many ideas, we started a friendship. This group was formed by three siblings
- two brothers and one sister, my sister and I. We started to go to their house, and it was
then that I noted that they had less vision than I and even so, walked alone, so I decided I
had to walk alone as well.
I had never walked alone because my parents didn't believe it was possible. It
was crystal clear to me that I couldn't approach them and tell them that from then on I
would walk alone. They would never accept it. At the same time, these new friends
wouldn't stop giving me incentives, not mentioning anything to my sister. They would say:
"When you leave the University, take bus so and so and you will get out close to your
place, first do this route before going home alone"
We planned everything in details, and I did it. This was how I really started to
walk alone at 23. After I did the things, I would come home and tell the family. My parents
would be scared, but they supported me; as I had already done something, they had to
accept, well, mainly my father, because my mother would be scared stiff. After having
done something they wouldn't oppose but would support me, but they'd never say "do it".
I decided I wanted to work when I was at the 4th year of my university studies. I
entered a contest to be monitor at an alphabetization course. I passed with good grades,
but they barred me at the physical examination. They called a meeting with a
psychologist and a pedagogue to tell that I had achieved excellent results, that it was not
something to do with me, but that they believed that my presence would depress their
students, they stated that unfortunately it would not be possible for me to work there and
crossed my name from the list.
I didn't take any legal measures as I should have done, because at that time I
was willing to do many different things. Later I sent my resume to the Finances
Secretariat of the city of São Paulo. To be a trainee no exams were needed, candidates
were selected according to their school reports.
I got accepted for a two year apprenticeship period. The Finances Secretariat
was located at the Liberdade neighborhood downtown. I studied in the morning at PUC
on Rua Monte Alegre, in Perdizes neighborhood. I lunched closed to work at Rua da
Glória, and would go to the Secretariat were I would work from 01:00 to 05:00 pm.
At that time, the first computer programming course for the visually disabled had
been launched in São Paulo. I heard about it because two visually disabled guys got a
teacher to help them. Then they did some adaptations by themselves, and got an
apprenticeship at Serpro (Federal Data Processing Service).
These friends had managed to create a class to teach computer programming.
At the time it was a course based on the Burroughs platform. They were able to secure
a classroom at Colégio Coração de Jesus for the classes that were given two evenings
a week for six months. This was in 1972, when I was at the 5th year of college, working
in my apprenticeship at the Finances Secretariat. I decided to take the course, more as
incentive to my friends than because I believed it had something to do with me. I
wanted my friends to use the opportunity of market placement.
Ricardo, one of my friends was studying Letters at Sedes Sapientiae. I would go
there after work and would wait for him until 06:30 pm when his classes ended. As I
arrived around 5:00 pm, I posed the reglette I used to write Braille on a low wall, and
would stand there doing my programming exercises in order not to lose time.
When he left, we went for dinner at Colégio Equipe, close to his school and them
we would go to Colégio Coração de Jesus for the computing classes. We returned home
by taxi and I would leave him at his home. At the time I was still living with my parents
close to the Borba Gato monument. As my mother had started working, she helped me
with transportation. I stopped using buses at that time and my life became much easier,
mainly because I didn't have to walk more than one kilometer from the bus stop to my
mother's house.
Unfortunately my friends gave up the course. I became quite depressed at the
time, for I liked the classes that ended in 1972. We were a small group. Only I and two
others passed the final test. Also there were not many professional positions at the time
because the market was starting to use IBM computers.
A friend that had studied with me in secondary school worked punching cards at
Control Data. She suggested I should talk with her boss to be accepted as trainee there
as soon as I finished the course. I went and told him about the classes and the fantastic
teacher; he became fascinated and told me "I am not going to give you an traineeship I
will give you an IBM programming course. We will also give scholarships for those who
will come from other states and the best students will be hired. I want to meet this teacher
of yours. I will hire him to give the classes".
I talked to my teacher and they decided on a ten month course of IBM
programming in two languages: Assembly (78) and Cobol (79). Forty students woud be
abe to take the course. Students came from different states such as Rio de Janeiro,
Bahia, Porto Alegre and Santa Catarina.
After I took this course I didn't think about the law course, I had completely
changed my focus and wanted to work with data processing; even so as I had graduated I
started a graduation course on Tax Law at PUC. I took two subjects: Theory of Law and
Philosophy of Law. The classes were on Saturdays. During the week I took the IBM
course at Control Data.
Coincidentally all my family went to this area, with exception of the youngest
child. My brother was one of the pioneers, he was the head of the programming and
analysis area at InvestBanco.
During this period, my sister (who worked at Serpro) and I appointed the two
visually impaired teachers of the course and trainees at Serpro as programming
candidates for my brother. We asked him to evaluate and hire them according to their
abilities. My brother submitted them to rigorous tests and was fascinated with the
performance of both. We, on the other hand, advised them not to give up their intended
wages. One was hired by InvestBanco and the other was hired by Serpro as full
programmers, both earning the same wages.
__________________________________
78. Assembly or assembly language is a notation of the code machine that can be read by humans , used by a specific
computing architecture. The machine language is a mere pattern of bits that becomes readable by the substitution of the
raw values by mnemonic symbols.
79. COBOL is a Third generation programming language. The acronym means COmmon Business Oriented Language
(Business Oriented Language)
Many students gave up the course, perhaps because the teacher had very quick
pace and preferred to give classes to those who followed his rhythm, without paying
much attention to those who were unable to follow him. He was very happy when he
found out I was helping those who were lagging behind. Teaching was something that I
loved to do. These people started to study with me, those whom he had approved at the
other course and some others from Rio and Porto Alegre. Thus, we were able to finish
the course with 13 students. The year of 1973 was the first and sole year with the largest
number of visually disabled persons in this field in Brasil - and note that there were no
special resources, there was no listing In Braille, no screen readers and much less the
quotas legislation.
Everything happened by means of political contacts, with the Mayor and
Governor. This is how we got jobs at companies such as Prodam (Information
Technology Company of the City of São Paulo), Prodesp (IT company of the State of São
Paulo) besides InvestBanco later acquired by Banco Itaú.
The 13 of us got a job in the IT market, hired according to the legislation in force.
Today many of them have retired. In my case I didn't want to work anywhere I had
relatives, so I went to Prodesp and I am still working today at Cesp (São Paulo Power
Company) as a system analyst, but at the moment I am "on loan" to Adeva (Association
of the Visually Impaired and Friends).
My first job was at Prodesp in 1973. There were few resources at the time,
therefore sometimes we were accepted by the management of the company but the
persons of the IT department didn't trust we would do our work. It was a tiring fight to
make them assign us tasks. At Prodesp things have not been easy.
During a certain period I had a boss that was one of those who least trusted my
work. For more that I performed well, met deadlines, I had to fight to get something to do.
Once I spent so many months with no task assigned to me that I became depressed with
the fact that I went daily to the company and sat there looking at the table. There is
nothing more depressing that such a situation!
When there was a change of management at Prodesp, several departments
received orders to dismiss people, and each department made a list. The bosses used
up the situation and put two visually disabled persons in the list of those who would be
dismissed - me and another man. When we were dismissed our teacher became
aware of the fact. He had contacts with boards of different companies, inclusively
Prodesp, where the new director had been his boss at InvestBanco. After this contact
the Human Resources Department received a notification to call us back and tell us
that this had been a mistake.
When they called us back, the other man went back saying nothing for he was
the sole one to support his family, he came from the Northeast of Brazil, was married and
brought the family from Ceará to São Paulo. I, on the other hand said: "you don't believe
in the disabled who are here. He will still have a fierce battle to be able to convince you. I
don't want this situation any more. I will look for a place where people trust my work. Now,
if you want to give opportunity to the visually disabled with my salary of junior
programmer you can hire two trainees, I even gave the name of two people, who
accepted and are working there to this day.
I knew that at that time it was not easy for me to get a job, but I didn't think it
would be so difficult. I started to look for a job and sent CVs all over the town - but the CV
didn't mention I was disabled. I was called for interviews at many companies, but I heard
the most foolish apologies why they wouldn't hire me, and all the time it was clear it was
due to my disability.
Inclusively, after calling me to take the test and seeing my name on the CV they
had the courage to say they didn't employ women. They thought it was less hurting than
assume that they didn't hired persons with disabilities.
I heard this many times, other justification they gave was: "you are requesting a
very high salary, for what you are asking, we can hire two persons", the type of excuses
they made up!
Other companies would let me go until the physical examination, where they
would disqualify me. One of the places where this happened was at Antartica. I heard that
only two people passed the test, a guy and I, but he had a heart problem. In the end, they
didn't hire either of us. They made me go through the orthopedist, neurologist, and many
other experts, I even asked them: at this company we have to run the marathon?"
In the meantime I had the idea of getting in touch with a friend who is a
journalist. There was a section in the newspaper Jornal da Tarde called "São Paulo
asks". We decided to write a letter to the newspaper. It started mentioning my name, my
height: 1.20m, my weight: 42kg and my disability. I mentioned that in spite of it all, I was
looking for a job and reported the rotten excuses I received from companies; then I posed
the question: "Is the right to work not guaranteed by the Brazilian Constitution?" From
there on, it was interesting, because people would stop on the street and ask: "are you
the one who wrote to Jornal da Tarde?"
After these episodes, I still took other tests and continued to be refused, however
the excuses improved. It was then when I realized many have read the letter. Much later I
was told that some companies affixed the newspaper page to the Bulletin Board of the
company
I prepared myself to the tenth test, at Citibank. I got there and no one said or
asked anything. I took the test and left. I found everything very strange. I was able to write
everything, I didn't use Braille because I could see a little; I only needed more time, and
they gave me. I stayed there the whole day. I couldn't believe it, I had already lost my
hope.
As I thought I wouldn't be hired, I decided to go camping, which was something I
loved. I intended to go with a group of friends from Prodesp. Between 1975 and 1978 was
the time when I camped many times. It was easy no special gear was needed, I would
walk slowly, limping as my former husband used to say: "rowing without using orthesis or
a cane"
I was preparing for the trip when my father advised me to call the bank to ask for
the test result: "who knows? he said" I phoned and heard: "tomorrow you have to show
up for an interview". I put the phone down and the first thing that came to my mind was:
"Oh, my camping!" I thought first about the camping because I was not believing what I
had heard".
Even so, I went there on the next day for the interview and talked to three
bosses. One of them said: "You've asked too much, we only can pay so much". I decided
to accept just to see what would be their excuse, and he answered: "OK, you will pass
the medical examination".
I couldn't hold my voice any longer and said: "the doctor will reject me if you
don't tell that I am to be hired in spite of my disability. If not, tell me now that you don’t
want to hire me". He said: "Go in peace, there is no problem". I took the medical
examination and they hired me between May 1975 and January 1976. I stayed nine years
at the bank. I was promoted. I worked hard and it felt very good. I had bosses who really
trusted my work. They realized I carried out well the most complex tasks and I always
delivered on time.
I received the most complicated programs of the system; in professional terms
Citibank was excellent. I could even forget I was disabled, because there were no
restrictions. I worked really hard and they trusted so much my work that I received
promotions. It has been very good, although this didn't happen during the whole nine
years - but at least this has been the reality for at least the five first years.
Afterwards the bosses changed and what happened is what always happens in
the life of a disabled: at each change you must start from scratch. Nobody wants to know
what you already did, if the previous boss trusted you or what you knew. One has to
prove everything again, it is as if nothing of what you did before existed, it was like as you
had joined the company at that very moment. These changes coincided with the period in
which I got married and had two children.
After I got into Citibank, my dream was to live by myself, even not knowing if I
would be able to carry out all house chores. It would be a shock treatment, but I believed
that living alone I would be conquering my independence. I could live and do things my
way.
In 1977 I bought my apartment. My father in spite of being "furious", ended up
helping and accepting the situation, at the same time when he used to declare that I was
"killing my mother". Obviously that was his blackmail, but I thought I had to leave home
before my youngest sister for it would be much worse to leave after she got married. I
bought a studio at Rua Brigadeiro Tobias, close to Citibank that was located on the
corner of Avenida São João and Avenida Ipiranga, and thus I could walk to work. It was a
perfect solution.
I had many friends and an intense social and cultural life. My apartment was
always visited by friends and visually disabled students who came to my place to learn
Cobol language.
In 1975, inspired in the letter sent to Jornal da Tarde, we created a group with
the goal of claiming the opening of the market to the visually disabled and show to the
public in general the great difficulties faced by these people who wanted to conquer their
space.
Senator Franco Montoro who had been my teacher, presented to the Congress
the bills we would send him. This group that was dispersed along 1976 was recalled by
me in 1977 In order to create an entity with the following goals: integrate the visually
disabled person into the society, mainly through their professional insertion; try to
decrease the social prejudices through acceptance; teach the not disabled about the
abilities of the disabled, and teach the disabled the awareness of their role in conquering
their citizenship. If would be an entity with equal participation and rights for the disabled
and not disabled, and it would be called Aveda (Association of the Visually Disabled and
their Friends). From then on, we started to plan the articles of association that have been
filed on August 09, 1978.
In 1979, Marcos from Salvador came to São Paulo to take the Cobol course. He
had a car accident where he lost his sight. He worked at Dow Chemical who got the word
that in São Paulo there were blind programmers, therefore the company sent him to São
Paulo, so he would work in data processing. He came to me and I gave him the course as
quickly as I could, giving classes anytime and recording the material for him. We were
succesfull, he went back to Salvador at the end of the year, and in the beginning of the
next year, started to work as a programmer at the company.
He ended up referring another visually disabled colleague to São Paulo to take
the same course. This man took the Cobol course and in 1981 started to work as trainee
and participate from Andeva. In the beginning of the same year we started to date, and
got married in September. It was really very quick.
We had two children. During both pregnancies I had to take some leaves
because due to my size, the child would exert pressure on my stomach, which made me
vomit, mostly at night. At least I didn't gain weight, I lost weight! Face to the great number
of X-rays I had been submitted to during my whole life, my pregnancies were considered
as being high risk pregnancies.
After seeing several famous obstetricians that only scared me about the risks of
the pregnancies and the suffering I would undergo, I decided to see another physician
who took care of a friend that had given birth recently. He was not well known, but he had
worked as assistant to an expert who was considered to be an excellent professional. He
made optimistic remarks: "Everything is fine, but you might have a 7 month premature
baby, but this is no problem. When you will reach the 7th month we will give you an
injection to strengthen the baby's lungs. A 7 months premature baby has all probability of
surviving. If the baby is born later, it will be excellent for the baby". The sensation was so
good, that he made my two deliveries.
My first son was born one week before the date he had foreseen. I took the
injection on the 7th month as we had agreed upon. The baby was born with 51
centimeters and 3.580 kg - a big baby and a very calm baby. I was afraid he would have
to go to the incubator, I even asked which was the best maternity in São Paulo because
going to the incubator was a risk. I know several persons who got visually disabled due to
the excessive exposure to oxygen in these devices.
I decided my son would be born in the best maternity of São Paulo. I went to the
maternity of the Albert Einstein Jewish Hospital. I always say that I have to thank God for
I was able to save money for these occasions. I spent exactly what I had and didn't have
to borrow anything from anyone.
It is funny because the adventure of becoming a mother was very crazy. I
thought I wouldn't be able to get pregnant. I saw myself with so many disabilities that I
didn't believe I could get pregnant. Even having seen a gynecologist who stated there
was nothing wrong with me, I still didn’t believe it. When I found out I was pregnant, I was
radiant! I couldn't care if there would be difficulties. For me, I would never do something in
order to not become a mother. I wasn't interested in objections, I wanted to believe and I
wanted the others to help me believe, and I was dead certain that I would have a normal
child.
Me, who was afraid of pain due to what I have suffered with the fractures, I was
not afraid of having a child. I was not afraid of the caesarean section, although I had no
idea of how to care for a child, I had never taken care of children; nobody had ever
trusted me to let me do something with babies. I had never changed a diaper.
When Fernando was born, Ieda a visually disabled friend was living with us.
From the three she was the most fearless one, making, helping and teaching everything
she could. She knew how to care of babies because her sisters had trusted her to take
care of the nieces and nephews. This woman was living with me for some time and was
very independent; she wouldn't allow anyone to take care of her things. She would wash
and iron her clothes so well, that she was always immaculate. She would also clean the
house in such a way that there wouldn't remain a grain of dust, and she was also an
excellent cook. She was a wonderful person, unfortunately she has already passed away.
My husband was also great, he gave the baby the first bath. Among other things,
my father had taught him how to grab a newly born with just an arm. It took me a little
longer, with time I gathered the courage and started to do everything as well.
Besides the two of them I didn't allow anyone from the family to come home. I
also refused to stay with my mother. I took that decision because I knew that if they were
around, I would continue to think I would never learn how to take care of the baby,
therefore, the three of us took care of all that novelty. After this experience, the birth of
the second child was much easier. We hired a maid to stay with the baby during the day
because I went back to work. I didn’t have a maid during the night or weekends.
Since my second pregnancy some changes took place at Citibank, for all the
management had changed. The former bosses went abroad and the new management
was not interested in the issues of a disabled employee. These facts coincided with the
introduction of computer terminals. The programs that used to be coded manually and
punched into cards started to be typed by the programmer directly onto the terminal.
Even before analyzing if I would or not be able to work with the terminal, they assumed I
wouldn't be able and that's it. They even put the equipment in my room in such a high
place that I didn’t have the slightest chance of reaching it, so I started to think that I would
not be able to do it, at the same time I was in no condition of trying, so I couldn't be sure.
When my second child was born, the bank waited for a month after I came back
from maternity leave to make me a proposal. The idea was to send me to an entity for
three years where I would give courses and my salary would be paid by Citibank. I
mentioned an association, APPD (Association of Data Processing Professionals) in São
Paulo, and I went there. During this period, I looked for a job, which I got exactly after the
end of my agreement with the bank. So, I can't complain, God has always helped me.
Since the establishment of Andeva until then I had always trained persons to
work in the field of data processing. However getting these jobs wasn't easy. We tried
with the state government, Prodam and private companies.
Between 1981 and 1982, Andeva and other entities that were being established
at the time, motivated by the International Year of Persons with Disabilities, fought for the
creation of municipal and state councils that would promote the integration of the
disabled, however in what concerns the opening of the labor market to this segment of
the population, things were not happening. In spite of everything we were able to get jobs
for some people at Banespa, Serpro, Cesp and Eletropaulo, and in 1984 another
disabled person joined Cesp.
I was giving courses and trying to employ these people as well as myself, until
1988 when I was able to talk to Mayor Jânio Quadros about the monopoly that existed
at Prodam that was not hiring and when hired someone it was through the referral of
some entity. I explained him that we didn't want referrals for our entity - we wanted an
open process for all institutions so that everyone could apply for jobs in equal
conditions. The Mayor said he didn’t approve of monopolies and thus opened the
opportunity so that people from Adeva and others could take their tests at Prodam.
From these persons, six have been hired, inclusively my students and myself.
These were hectic times and it was difficult to handle work, family life,
participation in Adeva and other social movements, but in the end everything worked fine.
The work and events of Andeva could only be carried out at night or during weekends. I
always took my children to the activities of the entities such as bazaars, barbecues at
Sesc, where I stayed at the entrance with the baby's pram, changing diapers and feeding
them while I worked.
Our children perceived our disabilities but we've never allowed them to feel
responsible for being our guides. They saw the mother helping the father and vice-versa.
They knew I had a little sight and when we walked together we gave the impression that I
was guiding my husband - but at the same time he was helping me with the physical
disability. I believe they didn't have the worry that they had to help us.
Perhaps the situation got complicated when we ended our marriage. In
psychological terms it has been very difficult for them. I noted that at the beginning they
were quite lost, thinking of how they would have to act from then on regarding their
parents.
Another interesting thing is that they have never complained about prejudiced
comments they heard at school. Later we became aware of situation of how our children
took things even as a joke. For instance, my former husband uses prosthesis in both
eyes, we found out that one of the boys took one of them to show his colleagues and
joked: "look at my father's eye". Nowadays they tell it as a joke.
From puberty to menopause I suffered few fractures, but in 1933 I had a severe
femur fracture, and as for my case no surgery has been recommended, I started to use
the wheelchair. At that time, the boys were somewhat older: one was 11 and the other 9. I
imagine this has been a complicated moment for them
I dreamt of walking again, but when I realized it would not be possible, I resumed
my usual activities. I continued with the same responsibilities and the same
independence. When I decided to "face" the chair, I adapted to it. I also fought to
convince the company that I could go back to work, even in a wheelchair. I not only went
back to work but shortly afterwards I coordinated a team of programmers for 2 years.
As to the years when I worked at the movement of persons with disabilities, I
have memories of a very interesting phase. We had a strong participation at national
level. Between 1980 and 1982 we were seeking representativeness, not only in legal
terms, but in the sense of uniting different entities. However there were many differences;
there were those who wanted entities separated by disability, others favored union. We
discussed fiercely but even so there was an attempt of doing something together, but we
were not united. I believe it is the same political parties: different trends and difficulties.
But this scenario wouldn't prevent us from travelling and making congresses. We
went to Brasília to make political contacts. We prepared events and lectures that lasted
the whole weekend; later we decided to make several congresses around the country to
know how we would establish the federation of entities and movements of persons with
disabilities. It was at that time that I met Lia Crespo, from NID (Center for the Integration
of the Disabled). We shared the same ideas.
I recall that at the time São Paulo had a different position from other places.
Here we were favorable to union, to have a federation of all disabilities, because we
believed it would be more representative. Lia, I and our entities had this position, but
when we organized a national congress in the ABC region of the State of São Paulo, we
were minority. Thus, four federations were created: one for the visually impaired that
existed until a short time ago, one for those with hearing disabilities, one for the mentally
and one for the physically disabled. But, as we foresaw these were not strong entities,
precisely because they were of a smaller size. I believe that a global structure would have
been much stronger; perhaps we had a utopic view, because the claims for each group of
disabilities were hugely different. It was a pity. But we fought, wrote and discussed a lot.
I remember that we went to the São Bernardo meetings using the VW Kobi van
that belonged to Maria de Lourdes Guarda who lived at Matarazzo Hosppital, and later
we would be taken home. I always sat on top of the engine, even when 6 or 7 month
pregnant, besides I was one of the last to be dropped home. I would be hurting all over.
When I was 5 month along the second pregnancy I suffered an hemorrhage. It
was on the day we were moving to a different apartment. The movers were assembling
my bedroom furniture. I was sitting on the floor when I felt the hemorrhage. I ran to the
bathroom terrified that I might lose the baby, and at the same time I was telling the baby:
"you have to obey me, at least now you will obey me and stay there quietly, you will not
move, it's not the right time. Stay quietly, obey mammy" and he stayed.
When I got to the doctor he requested an ultrasound; at the lab the women were
curious, I believe due to my disability. They would come in, look, whisper and ask: "Were
you born disabled? Are any other disabled persons in your family?" The doctor told me
my placenta was low, but it would go back to normal, and asked me to take the regular
preventive measures
As after more than one month later nothing had happened, I went back to the
regular routine of sitting on the van's engine I coming home half dead. I incusively took
part in a congress held In December, during my last days of pregnancy, with a huge belly,
where I had to stand for a long time.
One day, coming home from Adeva, the contractions began. It was a weird
situation because my husband had left to buy the medicine recommended by the doctor. I
had just received the visit of a couple who came to apologize for something they had
done a while ago. They and other disabled persons went to a different entity to sell
Christmas baskets on behalf of our entity without our knowledge. I had preferred that they
left so I could get ready and go to the hospital, for they were people I had no close
contact, and I would say: "It's OK, It's over, let's forget the whole thing" I walked around
the living room, because walking seemed to decrease the pain, and they would insist
"Don’t you want help? Do you want us to stay and pack your suitcase?" I would say "no",
almost saying "For the love of God, go away!" When they finally left and my husband
came home, I went to the hospital and was sent directly to the delivery room. As with the
first baby, the second was born quickly. One was born at noon and the other at 0:30 am.
Adeva, with the Christian Fraternity for the Sick and Disabled (FCD) coordinated
by Lourdes Guarda; The Movement for the Rights of Disabled persons (MDPD) and the
Center for the Integration of the Disabled (NID) fought for the implementation of state and
municipal councils for the rights of the disabled. The state council was established during
the term of Governor Franco Montoro and the municipal during the term of Mayor Mário
Covas. Adeva took part in the first boards of both councils. After some disagreements,
mainly regarding the criteria of choice of new councilors, we decided to leave.
We were fighting to have parity in the council we wanted the representation of
the entities of the disabled, of service providers for the disabled and the state
secretariats. We realized that the councils had only consultive and not deliberative roles,
and were doing very little.
The disabilities are different and each group had its own claims. For the
physically disabled, accessibility was obviously essential. For the visually disabled is the
access to written information, as they have difficulties reading, and this aspect is related
to education and culture. The position of Andeva and Lia's organization, NID, was that we
would never claim paternalistic actions or those that might suggest that the disabled
should only have rights and no duties. Our position has always been linked to equality,
participation and rights with duties.
But we should not remember only negative experiences. Therefore I want to
mention some episodes that show that politics is the science of promoting and carrying
out the common wellbeing. At the time of implementing the Municipal Council and holding
meetings at the City Hall's main room, Mayor Mario Covas came to us, being as usual,
practical and objective and asked how we imagined the council would be, and took all the
necessary measures to have the council become a reality.
At a different occasion the Mayor was inaugurating a fleet of busses. Lia used up
the opportunity to show him the difficulties of getting on a bus. He came closer to help her
and asked what had to be done to solve the problem. She asked him to sign a decree
that was already on his desk, on the implementation of adapted buses. He immediately
had someone to fetch the decree and signed it.
At the time Mario Covas was a Senator, we needed a contact in Brasília and
therefore we called his office. The secretary told us he couldn't take the call at that
moment and asked us to leave the phone number. I didn't imagine that he would call back
because I was used to call city councilors and not getting answers. They were always
busy, and he was a Senator!. He called after 10 pm not knowing who I was nor what
Adeva was!
In 1999 Adeva approved a project with the Vitae Foundation through which we
got Braille computers and printers. We rented an apartment at Praça da Bandeira and
started the Bandeira Training Center, were training courses on data processing,
telemarketing, stenography and typing, education for work, etc would be given. CESP
who already supported the initiatives for the disabled assigned its visually disabled
employees to work at Adeva. Since 2000, Markiano and I started to implement and
coordinate a Project called Developing Talents. Carlos assumed data processing; Célia
and Celso the printing area. Concurrently we were requesting to the São Paulo
government a place for our Training Center, for where we were, we had to pay rent.
One day when I was sitting at my desk at CESP, and Markiano who presently is
the president of Adeva was sitting on his desk next to me, the telephone rang and he was
startled: "It's the governor, what should I say?" Governor Mario Covas wanted to know if
we could meet next afternoon. On that day, October 6, 2000, the Governor surprised us,
signing the decree that assigned the use of a space at the Marina Cintra State School
and requested that his secretaries create a working group in order to render feasible all
necessary adaptations and installations. The center was inaugurated in 2001 after his
death with the presence of his wife, as the Mario Covas Training Center.
In 2002, we inaugurated in the same space the Infocentro for the visually
disabled with the presence of Governor Geraldo Alkmim. Some years later, the Mario
Covas Training Center was transferred to Lasar Segall State School. The Developing
Talents project is celebrating its 10th anniversary and enlarged its scope of courses with
a course broadcasted by TV; Assembly and Maintenance of Microcomputers; Cobol
Programming, Administrative Tasks Course, English classes, besides Braille and
Locomotion among other courses.
During this period we must have served approximately 10,000 people.
Our printing shop besides making our didactic material provides services to the public in
general. We have been placing many persons in the labor market and grace to our long
term partners and some new ones we are making true our dream of integrating the
visually disabled in the society by means of their work.
Image: Black and white picture. In a room with school chairs, there are two women and two men, all with name badges.
Inscription: Meeting at Anchietanum School, February 26, 1980 with Adolfo Perez Esquivel, Ieda, Sandra and Orlando.
Donation: Lia Crespo
Image: Newspaper Folha de São Paulo of July 24, 1980. Congress ends with recommendations about the disabled. An association of
the physically disabled, entities and persons who defend their rights and who are interested in their integration in the society was
proposed yesterday at the closing session of the 2nd Brazilian Congress of Social Reintegration, whose main subject has been “The
Reality of the Work for the disabled”
Among the conclusions presented by the other working groups, stand out the following recommendations: "The fulfillment of the
legislation on street vendors is mandatory for the benefit of the disabled with the elimination of peddlers; the companies should
eliminate or reduce work conditions that cause physical disabilities to their employees; rehabilitation is a subject that should be present
in the curricula of under-graduation courses of psychology, social work, medicine, education, nursing and occupational therapy; the
philosophy of rehabilitation is to be practiced in hospitals where patients stay after an accident or severe disease; improve guidance to
the family regarding the problems of the disabled”.
For the next Brazilian Congress on Social Reintegration, to be organized in São Paulo, still without a date, was recommended the
inclusion in its agenda problems related to the family, sexuality of the disabled, differential catechesis and leisure for the disabled, also
was recommended a five day duration of the congress and to try to involve authorities and entities related to the problem.
Inscription: Newspaper Folha de S.Paulo, July 24, 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Imagem. Newspaper O Globo, May 13, 1981.
Headline: Disabled launch campaign at the São Paulo Town Council
São Paulo (O Globo) – The International Year of Persons with Disabilities will be lauched again tomorrow at the plenary session of
the town council by the Movement for the Rights of Persons with Disabilities (MDPD). According to the entity Brazil has 12 million
of physically, mentally, visually and hearing disabled persons.
The campaign will be launched once more because on last 14th, President João Figueiredo made the official opening of the year, but
announced it “with the wrong name – International Year of the Physically Disabled”. MPDP explained that the President forgot the
mentally, visually and hearing disabled.
The main goal of the congress, according to Romeu Kazumi, member of the general coordination – is to take the issues of the disabled
to the public and to engage authorities and the society in the fight to equal the disabled into community life.
The program foresees several round tables carried out each month until November to debate issues such as “Urban Space”. “Work”,
“Transportation”, “Medical Assistance, Rehabilitation and Auxiliary Devices”, “Legislation”, “Leisure and sports”, “Education” and
Human and Social Relations”.
The most pressing problem of the disabled is their dependence of other people, said Romeu Kazumi.
Inscription: Newspaper O Globo, Mrch 13, 1981. Memorial da Inclusão.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspaper Diário Popular, December 07, 1980.
Headline: Persons with disabilities demand respect and justice: “Enough of Paternalism”
Persons with disabilities consider themselves at an integral part of the society and demand respect regarding the rights and duties
reserved to them, so that they can have full participation in the life of the community and contribute as socially useful human beings.
The paragraph above is part of the specific principles contained in a Program Letter launched yesterday at the congress by elements
belonging to the Movement for the Rights of Persons with Disabilities, whose purpose is to fight for the full participation of persons
with disabilities in the whole Brazilian territory.
This movement has a political nature, but is not related to any political party, is open to all entities and persons who are will to create
awareness in the society regarding the real image of the disabled. As 1981 was called by the UN as the “International Year of Persons
with Disabilities”, this movement used the opportunity and is mobilizing the largest number possible of coreligionists that might
become interested in the issues of the disabled. The movement has chosen the following priority goals to be developed next year by
means of seminars and lectures: “Architectural Barriers and Transportation”, “Work and Professionalization” and “Health and
Rehabilitation”
Goals: The working plan to be carried out ranges from the defense of the rights of the disabled; elimination of environmental barriers,
establishment of minimum quality and quantity standards for the rehabilitation program and services for the disabled, also
encompassing equipment and auxiliary devices to the representativeness with the constituted powers to defend the interests of the
disabled in the preparation of programs that aim to benefit the whole population.
According to the group that coordinated the Movement, leaded by Cândido Pinto de Melo, José Evaldo de Melo Doin, Vinícius
Gaspar Viana de Andrade, Maria de Loudes Guarda. Leila Bernaba Jorge, Luis Celso Marcondes de Moura and Romeu Kazumi
Sassaki, besides the necessary incentives for the creation of center for the disabled in different neighborhoods and cities, giving people
advertisement material, information, etc., it is necessary to change the idea and concept that the disabled are inferior beings in what
regards their professional capacity and respectability, or even unable to take their own decisions.
Back to reality: “Paternalistic attitudes have been pacifically accepted for a long time without any questioning and awareness of a
reality that is becoming more threatening every day” mentions the Program Letter pointing next to the facts that they consider as being
the main focuses of social marginalization: existence of long stay institution where the disabled and elderly deteriorate lonely,
humiliated and without assistance until they die; prejudices like disability would be God’s punishment for a committed sin; lack of
education of health and rehabilitation professionals, who inadvertently assume a position of superiority with their clients, not asking
them their opinion about their own needs and options and finally the feeling of pity that the society shows towards the disabled, and
the existence of environmental barriers that prevent the disabled to have access to school, voting urns, work, leisure places, etc.
Starting from the principle that the disabled discard any benefit that has the feature of gift, privilege or concession, they believe that
only a joint action, with awareness and pressure power can clarify and mobilize the State and the society for the different needs of the
disabled.
For the members of this movement, yesterday launched officially at the City Hall and that had the participation of many coreligionists
and the entities that represent them, the contacts are to be made with Ms. Lourdes or Ms Leila through telephones: 284-5493 or 65739. Letter are to be addressed to Rua Joaquim Antunes 611/53 – CEP 054115, São Paulo, SP.
Inscription: Newspaper Diário Popular, December 7 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Wilson Akio Kyomen
Image: color Picture of Wilson Akio Kyomen.
Text: “There were many trips to different parts of the country during the Internal Year. I traveled within the state of São Paulo, for as I
had a job, I couldn’t miss days of work, so much so, that the only long trip I made was for a congress in Recife, but I don’t remember
the exact date it happened”
y name is Wilson Akio Kyomen. I am 47 years old. I was born on April 8, 1963 in
Sapopemba, in the east part of the city of São Paulo. I am the youngest of a family
with three siblings, although my sister already passed away.
M
My father was born in Japan, he met my mother, a Brazilian born daughter of
Japanese immigrants here n São Paulo. My family lives in that neighborhood since the
60's and was one of the first families to settle there. Today I live and work in Sapopemba
at two schools in the morning and afternoon periods.
In spite of my disability I had a practically normal childhood. Usually I played at
home with my friends. In our group it was common to invent different games. For Instance
as we couldn't play conventional soccer, we played something similar and I was the goal
keeper. We also played table soccer, but there were many other games like chess for
one, that didn't demand much movement.
I wasn't born disabled. I acquired polio when I was 8 months old. So practically I
never walked. But, thanks God my family accepted the fact and my mother always gave
all possible help so I would have an adequate rehabilitation.
She went to all possible places, didn't measure efforts, until we reached AACD
(Association for the Assistance of Disabled Children)(80) where I started Physiotherapy,
swimming and other activities twice or thrice a week - but I've never been there as an
intern or semi-intern student at the association. My mother would take me, stayed there
and participated every day where there was rehabilitation.
Thanks to these activities at AACD, I was able to conquer some movements. I
was able to recover some mobility and was able to walk with an orthesis - but this
happened when I was over 4 years of age. I still remember the period when I was
learning to walk. It was my sister who would hold me and helped me to make my first
steps. At the beginning even with two crutches I was paralyzed. I was difficult to make the
first step, until November 12, the day of my mother's birthday and an unforgettable date
for us, for I've been able to make my first step, it meant a huge victory for me and for her.
_______________
80. Today known as Association for the Assistance of the Disabled Child.
Thus, I continued to live with her support until she left us, five years ago. That
woman followed my fight during all its moments, from childhood to after my marriage. She
spent many years at my side, with those typical worries mothers have…
During my childhood I didn't have much contact with other disabled persons.
There was a boy I met at my godmother's when I visited her, but we were very young at
the time, we played a few times and then lost touch.
After I was over 10 years, at the secondary school I met again that disabled boy.
I've always attended public schools close to our home. Coincidentally we were studying
at the same school, but that was a brief encounter and we didn't make strong friendship
ties.
There have been other important moments during my childhood: one of them
was when I first got in a playfield to play futsal. I was 13 and was studying at a special
class that repeated the 7th grade. At the high school I took part for the first time of a
Physical Education class, and this only happened because my fellow students insisted to
have me playing with them.
They knew I liked soccer and they convinced the teacher, who allowed me to
take part, and everything worked fine at the end. This gesture of my school mates made
this moment even more special, because it hasn't been my initiative or request. They
decided to include me in that activity because they knew how much I liked that sport.
And playing futsal or do for the first time something you like very much, is
something one never forgets! It is a strong emotion and it came as a surprise. I consider it
to be a gift from my school mates; something with a very good reception, even by the
teacher. After that first experience, there have been others, when the teacher gave me
freedom to participate whenever I'd want to.
I would say that gesture made me feel more included. It was something very
special and had no paternalistic hues, nothing like: "oh, the poor soul… he never can
play, let's give him a chance to feel how it is, even if it is just one time". I think that part of
my school life could be resumed to that. I understand that the end was much better than
the beginning
Between my first and third grades, we were still under the military regime,
therefore we had to sing the National Anthem, with the flag high on the mast, each time a
student would hold the flag, they made me hold the flag too.
I believe I've been lucky with my teachers, because they could have left me
aside, even at those moments, but they always wanted me to take part from all possible
activities. This was also important because it created a kind of continuity in my growing
process and social contacts - something that got better and better.
I have never been left aside, I didn't feel there were moments of exclusion, and
that was the best part. However I saw such situations at my work, and when I see how
some teachers interpret, even today, the issue of inclusion, isolating the disabled during
certain activities, I get extremely annoyed.
This is how my education evolved: I left high school already trained to be a
teacher and soon started to work, although it was not what I wanted to do. I'd like to be a
speech therapist, and was even working at it at the movements for the disabled,
And it's funny I had the profession, the working place, everything prepared, the
only missing thing was to enter the University, but I failed. Speech therapy was a new
area in Brazil there were few vacancies at the universities, something like 15 or 25 per
year at PUC (Pontifical Catholic University). I decided to work as a teacher while I tried to
get pass the entrance examinations for college. I ended staying at Education until today.
Now I wouldn't change, because it has been a good change, because if I had been
approved, I would have to pay for the studies and my parents weren't able to pay. It
would be very difficult to study the full day and still work at night.
I received the result of the PUC entrance examination by mail - my classification
was 104. As it was usual, those who tried the Catholic University also tried USP
(University of São Paulo) and I would have some chance, because there were always
some students who gave up; but that year it was a different situation, because no student
had passed the USP tests.
I was so frustrated that I decided I would not try again. I decided for other
specialization in the teaching field, I decided for letters, later pedagogy and decided to
dedicate myself to teaching because I was falling in love with teaching, much more than
now, because I'm somewhat tired. After 28 years in the field, I saw many things and it is
time enough to get tired - even so, retirement will take some time.
At that time, in the beginning of the 1980s I was finishing high school and
teachership. I was already active of the movement for persons with disabilities. I became
aware of the movement because I liked to read newspaper to be well informed, and I was
already aware that the coming year would be the International Year of Persons with
Disabilities.
At the same time I had heard or a few movements. I got in touch with NID
(Center for the Integration of the Disabled), and the first person I met was Lia, and later
Ana Rita, they invited me for a meeting, and from then on, I was a constant participant. I
was young, 18, by I was tuned to what was happening around me.
My participation, mainly between the '80s and 90's has been very intense, not
only in the movement of the disabled but also at the educational union. All my free time
was taken by these actions. I was able to divide myself into all that was possible for I had
three roles, besides teaching.
I was a counselor at Apeoesp (Association of Teachers of the Official Schooling
of the State of São Paulo) - today I carry out the same role at Sinpeem (Union of the
Education Professionals in the Municipal Education of São Paulo) and worked at the
disabled movement at NID and later at CVI-Araci Nallin - besides school class work. After
getting acquainted with the work of the movement, I assumed different positions because
I liked to contribute.
Today I can say that I've closed some cycles of my life. I continue only with the
activities regarding the disabled, which is an unending fight based on continuous
planning, i.e., we attain a goal and we start a new plan to continue to act to reach other
goals. This has nothing to do with "re-planning", therefore I will never stop working at the
disabled persons movement. In the case of unions, I am practically closing my
participation, because the political part wore me out.
At that time, everything was new to me. That world opened in front of me and
made me think: "what is going to happen? I had never suffered any discrimination … but
it could happen, even if being a teacher trainee was practically being a teacher, and I
didn't consider myself at completely inserted in the labor market.
In spite of being able to work, at the same time I would evaluate other aspects of
my personal life and then I was afflicted by the same doubts that everyone leaving his/her
teens have, and in my case these thoughts were added to the issue of being accepted in
spite of my disability.
There was also anther point: "Will I marry or not, will I have children or not?" "Will
I live alone?" I knew that at the movement there were others who thought about the same
issues, besides being there with the same goals. Being with them at that time was very
important because it motivated me.
Let's say that during my first years in the movement, I just participated, I've not
been active, and people said I didn’t open my mouth. The first person I met was Lia, at a
movement meeting at FMU (Metropolitan United Colleges). She had arrived early with her
brother, and as we were alone there, we started to talk, so my first contact was a casual
one.
I wanted to know more, so I stayed there for a while, just listening, not being able
to open my mouth to speak. This has to do with the way I am. But I believe I had phases,
during childhood I was chatterbox, in my teens I became quieter.
This meeting was not a specific NID meeting, it was of the movement of the
disabled that later became a not governmental organization called MDPD (Movement for
the Right of Persons with Disabilities).
After some years without seeing each other, Lia called me to take part in the
establishment of the Independent Life Center Araci Nallin (CVI-AN) and at one of the
meetings she joked: "Gee he speaks!" because until then I wouldn't open my mouth. But
at these meetings I was feeling more assured because I knew the people and felt free to
talk.
Although I believe that the freedom to talk appeared with the social contact at the
movement and NID, other experiences and other learnings I had have also been
important, even the act of teaching helped.
When I started to work, I taught children, so I had to talk. Later I became a
pedagogical coordinator, where I also had to express myself. Even so, until today I speak
with some shyness.
This all happened during the International Year. In 1981 I felt much euphoria, as
if that was a fad, everyone was looking for the disabled movements, all organizations,
institutions for lectures and other activities.
My part was more geared towards accessibility, education, leisure and
legislation. Lectures were requested all over the country. It was really a huge number of
requests, and through these lectures we increased our knowledge.
At the same time people lived at those cities that we visited started to become
more knowledgeable about the movements. They would get engaged and create new
centers, groups or institutions, this how I watched the movement grow.
That disclosure was very good for persons with disabilities because they've
learned there were other disabled round them and simultaneously the group became
known by the population in general.
As that was an initial moment, several interesting facts happened. I remember
that one fact left us somewhat embarrassed. If happened in Catanduva where Lia, Maria
de Loudes Guarda - whom I met at this trip and me, gathered for an event. One of the
organizers of the meeting asked us to talk to a disabled person who was not willing to
participate.
That was embarrassing because our discourse was that the disabled person had
to be the subject and not the object of the movement. This meaning that the person has
to participate by his/her own will to look for his/her rights. When we heard that, I looked to
Lia and she looked at me.
We had to say that that was not the way we acted, but until we were able to
explain... In the end, the person was convinced, or yet, forced to attend.
Later I talked to Lia about that situation. The interesting part of the story is that
the embarrassment has been more severe to us that to that person that has been taken
by force. I believe this story shows how disabilities were understood at the time. But, as
everything that was new to us, we would "swallow" it. However, we always told people
that they should do only what they would feel was right.
There were many trips to different parts of the country during the International
Year. I travelled within the state of São Paulo, because I couldn't miss work. The only
long trip I made was for a congress in Recife, but I don't remind the date.
Well, as happens in almost all congresses, there is the political part when we
hear many promises. At the occasion all that has been done during the year was
disclosed. We had a positive balance because all that movement created a seed that
would grow in the coming years and which culminated with the 1988 Constitution.
Unfortunately, once more due to work commitments I didn't participate of the trips during
that period.
But I was able to take part in the work relative to the State Constitution. It was a
period of much activity that started to put into the legislation everything persons with
disabilities needed and understood as the beginning of a process of inclusion.
Everything above happened at the moment the country was getting free from the
military regime. Everything regarding civil rights was novelty. The unions started to make
demands. All classes started to fight for its rights, in the case of the movement of the
disabled, it was no different.
There were some worries at that historical moment. For instance I feared there
would be an avalanche of rights being claimed, and that most of them would be denied.
The fact that we were seen as a minority also made out situation more difficult, but most
of what we have proposed has been approved.
At that time, we used the principles of the letter of 1981 that mentioned full
participation and equality, therefore the word we used was "integration" - and the idea
was that we were looking for means to "integrate" into the society.
Later, the word was changed to "inclusion" in the sense of encompassing
practically everything, because the word doesn't involve only the entry of the disabled In
to the society, but the social environment has to become used to this new reality; this
represented a huge advance in the fight for our rights. Obviously that what happened
from the Constitution on was very important. But besides mobilizing politians, we had a
hard work to unite al groups of disabled in Brazil.
In the case of São Paulo we had much support from PT (Worker's party). This
would cause worries because the political aspects were coming from the party of the
opposition, from workers' class - and at that moment, at the end of the military regime,
this was considered a problem
The movement that happened between 1981 and 1998 in order to consolidate
the legislation and get to the Constitution has been very important. We use to say that it is
quite progressive in the issue of rights, not only of the disabled, but of the citizens in
general.
I believe that we had a huge advance, even because we realized that our claims
were being put into white papers. This was a beginning. We know that later laws had to
be enacted according to the Constitution. They are being enacted still today.
I think it will take a while to have all the needs of the disabled being approved in
Brazil. But I would divide the fight in two phases: one until 1988 and the other from then
on, when things became consolidated. I believe there will be a third phase, in charge of
"shaving the edges", which are still abundant - but this is a work for the next generation.
I call "edges" the important points that have yet to be solved. In this sense I
speak about my area, education. We already have inclusion - and I fight for total inclusion
- but I see a reality in the classroom that has to be changed. It is a professional fight that
cannot impair what has already been conquered,
I see that the process of inclusion of children in classrooms today is similar to
piling objects in a warehouse. I say it because there is no support for this action. Although
the discourse says that this support already exists, the existing actions are not efficient.
When I worked as a coordinator, I had difficulties to include a visually disabled
person. Even requesting his transfer to other school with better conditions for him, I was
prevented from acting only because I belonged to a different teaching area. This fact
illustrates how inclusion within the school scope is a complex process that involves the
lack of preparation of the professionals of education to deal with disabled students.
I have that impression that those who don't experience the difficulties on their
own skin, will not look for improvement, but rather will criticize. I believe that usually those
persons with some experience within their families or with friends who have a disability
have a different view of the problem. Besides, human beings are used to say "no" even
before hearing the question - therefore the blame does not befall on the system or the
teachers.
However there is the work of excellent teachers that I saw at municipal level,
inclusively at the school where I work. There is a teacher who worked with me in the state
school network - she is a person who never had to deal with disabled persons, had a
visually disabled student. What was her reaction? She looked for training material,
learned Braille and other work techniques and taught this child how to read and write.
Next year this student taught all he had learned to the next teacher who would
follow him for the next two years. The child had an excellent performance until the 4th
grade, unfortunately the situation got out of control when in the 5th grade he had to deal
with 6 or 7 different teachers and the situation became very difficult. I felt it as a huge
defeat!
Other interesting story happened at the time I did some activities with students
from the student's association at the municipal school where I worked. When we visited
other schools - such as CEUs (Unified Educational Centers) I asked the students to pay
attention to the pictures we saw at the cultural exhibitions prepared by those students and
to watch their behavior. As we did joint activities for some time, my students knew what I
wanted to stress when I made such requests.
When we saw a child in a wheelchair at one of these events, I asked my group:
"what is the difference between this and our school where we have two students in
wheelchairs? The answer was: "it seems they do not participate". I said "that's it, you can
see it". Therefore I say much has yet to be done. This is what I call "cut the edges" about
inclusion.
We already have laws that regulate the beginning of the process, but we need
well-structured support. I know that there are places where the initiatives already work
well, but this has to happen everywhere. We cannot be limited to "there are schools and
schools", "management and management" or even "pedagogical workshops and
pedagogical workshops". I see much has yet to be done, although I speak only of the
educational sector. Other areas also have their problems.
For instance, transportation is one of the issues. Many disabled used the
services of adapted SUVs from the municipality of São Paulo, this service is called
Atende, but they complain that they have to wait 60 minutes for the van to arrive. These
failures still happen, although we have fought and achieved some victories in these 30
years of work, so we are aware that what we have now is not sufficient, so we can't stop
claiming for improvements.
But I repeat that these actions that don’t stop translate into a continuous
planning in order to generate uninterrupted progress. This cannot be confounded with replanning, for it would mean to give to steps forward and one back.
Although I defend this idea of continuous planning, I saw that the work is
following a slower pace, resulting into two steps forwards, stopping for a while until the
next two steps forward and so on. But at least the way things are happening we are not
going backwards. This viewpoint made me post a phrase on Facebook "I think life is
continuous planning, not eternal re-planning"
Besides all this work at the movement, there is the private aspect of my life, my
private life as a disabled that has to do with my marriage and the birth of my daughter.
But to talk about it, I have to go backwards in my timeline.
I say it because as soon as I started to work at the movement, still in 1983, I
started to work at a school located in a slum. I was an "eventual" teacher, meaning I was
not an effective teacher - and during that whole year I worked with the sensation I was
being watched.
My suspicions were grounded - the management assistant had requested one of
the 8th grade girls to help with the work at her classroom. It was a difficult environment, of
students that had flunked for two or three years. When the year ended, this assistant
called and said: "can I tell you the truth? When you came in through this door and said
you wanted to enroll, I was tempted to deny your request". I asked why, and she told me
the story of another teacher less disabled than me that had been admitted but missed
work most of the days. So I had a negative image regarding the disabled. I thank you for
showing me I was wrong. The person I put in your classroom was there to report on your
work, and she always told that you wouldn't let her do practically nothing. Therefore if you
go somewhere else where I'll be working you will always have my recommendation.
This fact marked me strongly because it has to do with my disability. She was a
lady that was going into retirement at the time, and I was able to demolish with a bias she
had about disabled persons and their work! That year that had started with so many
difficulties, ended with a victory! I was recently graduated, that was my first schoolroom
with very difficult students to work with, etc.
Going back to my private life and marriage, my idea was that a disabled had to
marry other disabled person, because this is what we saw at the activities of the
movement. It was a disabled married to a disabled or a disabled married to a psychologist
- so I thought things would happen the same way with me too.
At the same time I felt the person I was looking for would be at the movement,
but she was not. I ended up marrying a teacher who taught at the same school I was
working and today I am the father of a girl. This is a long story that starts with my sister in
law being my student in the fourth grade.
In the midst of the process that was the fear regarding the acceptance of her
family, even knowing that there would be no problem because my future mother in law
already knew me, which was a great help, but I thought that there might be some bias.
When my wife got pregnant, we knew there would be no risks regarding polio
during the pregnancy, even so I thought, do my in-laws are aware of it? As every father
and mother to be, we wanted our child to be born perfect. Today my daughter helps me
very much, besides bringing much joy, so this part of my life has been solved, now I still
have to write a book and plant a tree…
As besides being an educator as her mother, inevitably we are very demanding
regarding learning aspects, at the same time she had to learn with my disability, but I was
lucky because the quickly perceived my limitations, so my little girl knows where I can or
cannot go, and deals very well with it.
When we have a family meeting, her first question is about accessibility, if there
are stairs or not. After checking the information she tells me if I can go - and there is no
problem if I can't go, for her this is natural.
When she had her first presentation at school, she wanted me to be there. When
the course coordinator - with whom I had already worked - knew I was in a car in front of
the school, she made me go in through the school lift. My daughter was radiant when she
saw me. I could see her happiness in a very important moment for us all.
Curiously me wife is more worried about my disability than my daughter,
sometimes I have to go out alone to the bank or to do some shopping, and she will say: "I
don’t like you to go alone…" so I have to remind her that when we met, I already would
go around by myself and did many more things that presently.
We met in 1996, at that time I had many activities - three of four simultaneous
ones - but I was already slowing my rhythm. So it was clear that if she wanted to date me,
she would have to follow me. During that period I was helping the Brazilian Boy Scouts
Union about cantonment and inclusive camping. NID and I even organized two camping
activities at their field at the base of Pico do Jaraguá, in Pirituba, northern part of São
Paulo,
I was in charge of organizing inclusive games that could be played by disabled
and not disabled. My relationship with the scouts became closer from these activities
onward. They perceived that a camping with persons with disabilities was not only
being in the forest doing nothing. They could have normal leisure and recreation
activities.
But on the scheduled date, it was raining, so we had to improvise and used a
shed. I always have a "B" plan, I plan something and create an alternative. With the
rain, the first question that I heard from the group was: "what are we going to do now,
when everything is wet and muddy?" I answered: "we can use the shed, I gave the
necessary information and we created the activities, everything went fine.
I think I learned to solve last minute problems working at public schools, because
usually there we wouldn't have covered playing fields When we planned presentations
and it would rain, what would be do? Cancel the activity? No, I always thought of a
different solution.
It was always like that, because looking to the sky and complain wasn’t going to
help. I had to find a way out. That was when they told me that due to that feature, I could
be a scout. I was invited and worked with them for a while. This was one phase.
I believe that there is a moment in one's life that we have to define our lives,
either we continue to do the same things we did when we were single or we turn into
family life. Once I mentioned to a friend that between marry into politics or marry into a
family, I'd choose the second option, because I believe that family and politics don't go
together, it's very difficult.
Times have changed, in the 80's there were many youngsters joining the fight.
Today we have a different reality. I see a great problem that is not circumscribed only to
the disabled, it is the difficulty of creating new leaders; we had this same fight in the union
sector, it seems to be a general behavior: the leaders in power seem they are eternal.
In the field of disabilities, there is a different feature, for in the movement
we have old timers and newcomers, but the newcomers have first to be trained. I believe
we have to train young leaders; we also have locomotion difficulties, this make
mobilization and meetings much more difficult.
The movement is very similar to a sea wave: all of a sudden thousands of things
happen, many people arriving, activities happen, then they leave and there is stagnation
until the new wave of people arrives, and when they do arrive, sometimes due to ego
issues, they forget of what has been done previously and they want to start from scratch,
obviously there are those who believe in continuity and say "let's continue with the
important things that have already been achieved".
When I started, 30 years ago, it was very difficult to hold meetings. For instance,
I was the NID member who lived farther away. Someone, I don’t remember who, once
said; "If Wilson comes from Sapopemba to rua Guaipá in Lapa, then so and so who lives
closer can also attend". For me, at the time it was important to belong. I had my own
goals, things I wanted to attain, besides living that reality and have a good experience.
Today we are once more in the situation that there are no leaders either by lack
of interest or training. The institutions exist, but it seems that we are chained to some
activities and forget others; at the same time I feel that there are people who want to take
part, but locomotion and transportation are impediments. The disabled are using the
internet to partly solve this problem and keep being updated. A good part of the disabled
is doing it; therefore, I believe that it's very interesting to have this story to be disclosed in
a book and in the web.
This way, people will become aware of what happened in the past and will
understand that everything didn't appear just now or from the 90's on. It is enough to think
how many of the newcomers didn't have this 30 years of experience as they hadn't even
been born at the time. It is really very interesting to do something that will link the points
of this continuous process.
This record is important for the training of these newcomers, but this requires
time and we cannot recover the time lost during those moments when nothing happened.
At the same time that we have to be accountable for the things that continue to
happen, there is a lack of knowledge of what has already been done. For instance,
someone will fight for the curbside cutouts at the city's council and will talk to a politician,
being unaware that there is legislation in force about this issue. Due to lack of
information, the politician decides to create a "new legislation" on the issue, this cannot
happen!
One of the things that called my attention was to perceive as people are not only
searching for information in the web, but are also interacting with the web. I say so
because I created a blog about the areas of disability and education and someone
accessed the page to thank me for having posted information about inclusion laws in
regular classrooms. She read my page and researched more details on her own. This
happened in 2008 or 2009.
This was very gratifying for me, because it means that there is another person
informed about this important issue, because the lack of accessibility can make the
wheelchair user or someone with some motor disability, to feel excluded even at his own
home.
As the school where I work has just the ground floor, I've seen many different
attitudes; there was a 8 years old girl who only needed physiotherapy, but the mother put
her on a wheelchair, later she moved to a different neighborhood and I lost contact - and
there are many families in the same situation - showing how it is still difficult to inform and
impart awareness, even considering that our fight started in the '80s.
There has been another situation, this time it was the teacher who asked me to
give a lecture on inclusive education and the rights of the disabled to a group of disabled
in the Itaquera region. I went there and ended up speaking about everyone's rights. I
showed them that they were entitled to education, health, etc. - but the fact was that
those disabled were not attending school nor did they know they could attend!
One week later, I met this teacher, who also was disabled, and she thanked me
for being there, I answered that this was part of our work, she said that I had mentioned
the right of enrollment and there were people who went to the school to fight for their
rights, couldn't these people become annoyed or frustrated?. I got scared with what I was
hearing and said: "But how? They have to fight for their rights"
Well, this strange scene remained in my memory: the disabled woman was
discriminating, saying that the group couldn't get where she got! For me it was a victory to
open the minds of those who were there - but the teacher didn't see it the same way I did.
There was another incident with this teacher when the terminology has changed
from "integration" to "inclusion", and she came with that readymade phrase: "only the
word changes, everything remains the same". I told her it wasn't the same thing and
explained to her what integration and inclusion meant, and the answer I got was: "then I
preferred integration". I answered that perhaps integration would be more interesting for
her disability, because she could get around, but one has to think in general terms".
How to deal with those cases of mental disability at school? There are situations
that have to be carefully analyzed. How are we going to include these persons?
Unfortunately if there is no support there will be no inclusion.
Once more that's an issue of "cutting the edges". Inclusion doesn't mean only
placing the child in the classroom and say that child is already socializing. Inclusion
means participation, means planning.
Around the year 2000, I've seen a case of a visually disabled student at the
course Education for Youngsters and Adults (EJA) in the evening period. The fact is that
the teachers wanted to give an activity but didn't know how to deal with the student. I cut
into the conversation and asked: "have you asked her how she learns? " one looked to
the other and answered "no" so I told them to ask her, it's easier than have you here
breaking your heads, besides you're not doctors, so it will do not good for you to decide,
and even doctor's don't decide by themselves today"
When I was small the doctor would say "he is going to use this orthesis with this
specification", later, another doctor gave me prescription where I would use
immobilization of the left leg and orthesis on the right leg - I have no strength in the left
leg, only in the right leg - so he inverted the sides. It was difficult to convince him he had
to do an inverted orthesis. This physician didn't belong to AACD, but as he knew the
technician at AACD he said: "oh, but you're different, you have to use the orthesis
inverted.
Finally, going back to the EJA student, they decided to talk to her and it was
much easier for them to continue their work, but as every student at the adult
alphabetization course has difficulties, she ended up leaving the school.
The school environment has huge challenges. Each year is a different situation
each class has its own way. I remember that after a period of coordination, I went back to
the schoolroom and saw that the students - all ten years old- were afraid. I didn't know the
reason, if it was due to my disability or because I've been a coordinator and was strict. It
had nothing to do with my disability, when I heard it I realized that children to not
discriminate. They look, sometimes want to touch your wheelchair in an absolutely natural
way - the same occurs in other environments.
When I was single and went to the beach with a visually disabled friend who also
was a teacher, it was the same, due to the fact that I use crutches or wheelchair, at the
beach I would sit on the sand, or he would carry me. It didn't take long for the children to
come close. Once he said: "we attract the kids anyway, the school is not enough". And it
is because they are curious, and they see us as someone else they've met.
I worked at EJA for 20 years, and those adult students used to say I was an
example. If the teacher is already socially considered a model, imagine a disabled one;
besides I worked only with women from the 1st to 4th grades. There was also the issue of
gender. Many doubts crossed my mind about how and why I was treated in a certain
manner, then perhaps the disability was the least thing to call their attention,
There was one single student that almost got a beating from her schoolmates
for having mentioned something related to sex. She was an uneducated person and was
curious to know whether I was normal or not. The students got angry and wanted to fight
with her, reprimanded her, but I answered: "each case is a case, some persons have
difficulties in their sex life and others don't". That was the only more complicated
comment I had to deal with.
I have no doubt that the issues related to sexuality and disability still constitute a
taboo. There is the prejudice that no disabled can have sex. Obviously it is something
that makes people wonder. During the teens - of a disabled person or not - there is
always the thought of how it is going to be. It's normal.
I may say I was fortunate because my life has been practically normal and I did
everything I ever wanted to do and I cannot say I have regrets. I never regret what I do,
because it's already done. I didn't have just one girlfriend, but also didn't have many
because I'm not a Don Juan. I always wanted to find the right person, if it didn't work, we
would end the relationship.
What remained from all my experiences may be resumed in one word
"acceptance" - because sometimes the person who is with you accepts you, but the
family may have objections, in this case either you break the prejudice or she will leave
you because she can't bear the weight of the situation.
Then you think that the affair ended due to the disability. I had a friend who
didn't marry a woman simply because her parents didn't like or sympathize with him, and
he had no disability! This shows that these things happen to everyone. Even because
there are prejudices regarding many different things, in his case, the reason was strictly
religious.
The other friend, the visually disabled one, had a life different from mine. His
only engagement was in the union sector. He ended marrying one of his students from
the evening period, is doing well and has two children. Obviously he was worried if his
kids would be born disabled, because hereditary factors might be involved. The first was
born healthy and he calmed down, the second is also healthy, but it's always the same
story, pregnancy causes worries to the couple. Sometimes you give a great weight to a
situation and do not perceive that everyone goes through such situation.
I never worried about the sexual aspect, I don't know if due to my experience or
my life history; I didn’t feel difficulties and had a normal life. I was worried if I would marry
and become a father. I married late because I wanted to live my life before, until the
moment came to stop and do different things.
I started taking care of my life, changed my habits. I used to go out every
weekend with the guys at NID and CVI-Araci Nallin. Our great friendship has been very
important to me. I remember that we used to go to the theater, movies, restaurants - we
had an intense life and this was excellent. When we talked, and this happened frequently,
we saw that everyone had the same problems.
During my whole life I went through many experiences. I remember one meeting
at the Teaching Management Department, where they had prepared an activity of
technical guidance on relaxation, when a counselor proposed a simple exercise: one step
ahead, one step back and one step to the side, she only forgot it would be somewhat
difficult for me to do the exercise.
When she announced the activity, I made a slight protest, I left the circle with two
other people and we observed. At the end, she apologized and said: "inclusion is not only
for students, it's for everyone; therefore before organizing an activity, remember this what if we had another disabled person here?
I registered the experience at CAPE (Center of Specialized Pedagogical
Support) as I also made remarks in this regard to the State Government Study Center at
Rua Pensilvânia where I found some hurdles. It was a funny situation, because that day
the coordinator of the place started the event saying: this building is inclusive and has
been complete adapted"
She was present during lunch and I had the opportunity to mention all difficulties
I was facing and others that may affect persons with different types of disability.
At the end of the meeting, she said, looking at me: "I want to make a correction
this building is "almost completely adapted" because today the building mistakes have
been pointed to me". That was very valuable to me, because it meant another
contribution to change a reality.
The mistakes were details, but the details make the difference, mainly in the
area that treats the disabled. These are points that sometimes are overlooked by many;
even the school where I work is not completely accessible, although ramps have been
built while I was the coordinator.
It was when the management said: "You have to have access to that room, so
we will build ramps". This is the reason why there are many ramps in the school, but not
throughout the entire building. My class room, at the end of the corridor, is the only one
that will have this type of access.
I never forget a charge that depicted two people going to a restaurant, a disabled
and a not disabled. The waiter comes to serve them and asks the not disabled what
would both have to eat, as if the disabled couldn’t choose from the menu! And such a
situation happened to me, but I was unruffled and told the waiter: "the disabled here
thinks, sees, talks and also has its own taste, if you want I can answer your question", I
had never imagined that such a scene could happen in real life, but it happened.
I have also experienced a situation which is not related to my disability but which
was very funny. I was in a shopping mall at a woman's clothes store and a sales woman
came to me and I asked to see a blouse, and she answered: "but here we sell only
female garments", I said "Yes, I know, I am buying it for my mother". The woman was
completely baffled by my answer. Sometimes, we have to speak like that so that people
think before they open their mouths.
I also learned something: men get much more attention at women's stores than
women. When a woman comes in, she receives regular attention, when a man enters the
store he gets almost customized service. This is what one learns living in a society.
Speaking about our lives, is to make a selection, we choose the most important
moments. It is great to know that after all this time, what my generation thought and
shaped, already has its own form and is almost ready. I know that there will always be
other details to perfect, but I believe that the great bulk is already in practice. Now we
have to trim, settle and adjust - and the fight continues, it will always continue and I
believe other generations also would say the same.
Image: Newspaper Jornal da Tarde, March 16, 1981
Black and White Picture of hundreds of disabled and not disabled persons fill the plenary room at the Town Council with the saying:
“Full Town Council plenary room for ceremony”
Headline: In defense of the disabled. Official Brazilian Opening of the International Year of Persons with Disabilities took place this
weekend.
The plenary hall of the Town Council was full this weekend with blind, deaf, paralytics and other authorities that promoted the
symbolic opening of the International Year of People with Disabilities in Brazil. Starting the ceremony, Odete Cláudio do Nascimento,
who is blind, went to the podium and read, in Braille, the Declaration of the Rights of the Disabled, according to a text approved by
the UN.
The Reading was followed by an intense round of applause. Among the participating disabled persons, there were representatives from
practically all Brazilian states. For those in charge of the movement, the words of the speakers and the enthusiastic manifestation of
the audience showed that the Brazilian population of persons with disabilities starts to organize itself to fight for its interests.
The persons in charge of the promotion where the coordinators of the Movement for the Rights of the Disabled) – MDPD, created last
year in São Paulo, and which already has centers being organized all over the country. One of the organizers is the engineer Cláudio
Pinto de Melo, who was the chairman of the panel chosen to carry out the official program of the event.
At the panel were also the following authorities: Judge Renato Laércio Talli, Corregidor Judge of the prisons of the State of São Paulo;
jurist Dalmo de Abreu Dallari; Don Luciano Mendes de Almeida, secretary of the National Conference of Brazilian Bishops (CNBB);
father Júlio Munaro, representing Cardinal Paulo Evaristo Arns; Otto Marques da Silva from the Committee for the International Year
of Persons with Disabilities.
Among the manifestations of support to the promotion a letter from P. Koenz, resident representative of the UN in Brazil, who
considered “highly praise-worthy” the symbolic opening of the International Year of Persons with Disabilities and wished “much
success to the event” as well as to all other activities programmed by the MDPD, praising the goals of the entity was read aloud.
The participants of the promotion received several of the publications of MDPD, and most important, the official text of its Program
Letter. Besides denouncing injustices and social inequalities, the authors of the Program Letter stress the three specific principles for a
change of behavior regarding the physically and psychically disabled in Brazil:
1st. Persons with disabilities are an integral part of the society and demand respect regarding the rights and responsibilities reserved to
them, in order to enable them to have a full participation in the community life, and thus, contribute as socially useful human beings.
2nd. People with disabilities to not claim benefits that have the feature of privileges, concessions or gifts, but they claim for what they
are fully entitled to as citizens of a country and as full human beings.
3rd. Persons with disabilities state that only a joint, conscious action with pressure power will be able to clarify and mobilize the
society and the state for the different needs that characterize the disabled.
According to the authors of the program letter “the idea that there are no prejudices and that all social segments are integrated is given
by common sense, embodied in protectionist laws that are prepared top down and that mask the reality”. Therefore they admit that the
Brazilian disabled have large obstacles to overcome.
In this sense, law maker Dalmo de Abreu Dallari was much applauded in this lecture when he mentioned about the risk that the
International Year of Persons with Disabilities may become a failure similar to the “International Year of the Child”. To avoid such
risk, he proposed that those interested in the success of the event “be willing to fight against the prejudices of the society and against
the risk of lack of action.
Inscription: Digital collection Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: Newspaper Notícias Populares, March 29, 1981.
Headline: Physically Disabled Persons camp at Jaraguá
Dozens of physically disabled persons facing the rain that fell on Friday night went to Escola Jaraguá Camp site, where they
participated from an original weekend camping. This is the first time such camping is organized in Brazil. The initiative came from the
Center for the Integration of the Persons with Disabilities of São Paulo, with the cooperation of the Brazilian Boy Scouts Union.
Everything was made with much joy, in a merry environment, as part of the celebrations of the International Year of Persons with
Disabilities.
Inscription: Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Image: color Picture.
In a room with a table covered by a white lace tablecloth eight persons pose for a picture.
Inscription: NID Christmas Party, December 1981
Ana Rita, Luiz Celso Marcondes, Romeu Sassaki, Lia Crespo, Luiz Garcia Bertotti, Wilson and Nina Correa.
Inscription: Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Image: Handwritten poster. 1st NID Camping – March 1981.
Meeting point:
Address: Rua Guairá 1263
Time: 7:00 pm (unfailingly)
Date: March 28/29
Remark: The amount of $300.00 will be collected to cover food expenses. There will cars at the disposal of those who don’t have their
own means of locomotion.
Inscription: Poster. 1st NID Camping – March 1981.
Digital collection Memorial da Inclusão.
Donation: Lia Crespi
Image: Color Picture. Outdoor picture taken in the evening with people sitting around a bonfire and talking in groups of three or four
people.
Inscription: 1st NID Camping, March 1981
Leila Bernaba Jorge, Maria Conceição Lima Ferreira, Cila Ankier, Luizão, Natália, Ana Rita de Paula and Mr. Décio.
Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Color Picture. Outdoors picture taken in the evening with eight people, two of them children, behind them there is a white car.
Inscription: 1st NID Camping, March 1981
Crisitna Sugaiama with Diane and Roger, Marisa Paro, Lia Crespo, Gonçalo Borges, Araci Nallin and Cila Ankier
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo
Image: Color Picture. A woman is being suspended in a wheelchair by a crane (portable elevator) designed for persons with
disabilities. Two women watch. In the background the wall of the camping tent.
Inscription: 1st NID Camping, March 1981
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo
Image: Color Picture. On a wooden table where is an open book, a man and a woman are doing origami. A man is sitting with his back
to the picture and a woman is close to the table.
Inscription: 1st NID Camping, March 1981
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo
Image: color picture. Around a wooden table with an open book on its top, several people attentively watch the explanation given by a
standing man with a piece of paper in his hands. Far from the table a woman with a boy on her lap also watches attentively. In the
background the wall of the tent may be seen.
1st NID Camping, March 1981, origami activity.
Ana Rita de Paula, Araci Nallin, Romeu Sassaki, Sandra, Luizão, Cristina Sugaiama with Roger on her lap.
Digital collection: Memorial da Inclusão.
Donation: Lia Crespo
Image: Color Picture. One man standing with legs apart in balance posture, holds with extended arms the back of another man, erect,
holding his feet together and leaning backwards over the first men. Both are smiling. Two persons sitting on a bench are observing.
Inscription: 1st NID Camping, March 1981
Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Image: Color Picture. Five persons pose for an open air picture with their backs to a river.
Inscription: Fartura/SP, 1983 during a lecture at the city hall of the town. Maria Cristina Correa, Lia Crespo, Wilson Akio Kyomen,
João Batista Cintra Ribas and Dora.
Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Image: Color Picture of three men sitting at an event table where it is possible to read the identification cards: NID – Wilson Akio and
NID - João Batista.
Inscription: Cycle of Debates: The political parties and the issues of person with disabilities; July 1982, São Paulo. Orlando Filpo,
Wilson Akio Kyomen, João Batista Cintra Ribas
Digital collection Memorial da Inclusão.
Donation: Lia Crespo
Image: color Picture where 16 persons – men, women and children, pose on a mountain top.
Inscripton: Pico do Jaraguá/SP. Recognition trip for the 1st NID Camping, March 1981.
Romeu Sassaki, Ana Rita de Paula, Mr. Décio, Leila Bernaba Jorge, Araci Nallin e Wilson Akio Kyomen.
Digital collection Memorial da Inclusão.
Donation: Lia Crespo
CHAPTER
5
SPORTS IN THE INCLUSION PROCESS
OF THE DISABLED IN BRAZIL
Vanilton Senatore
Introduction
When the UN defined 1981 as the International Year of Persons with
Disabilities, it was able to have most of its member countries in five continents
include incisively in their agendas issues related to the rights and the effective
inclusion of the disabled. There was a growing awareness of the disabled
persons regarding the defense of their rights, making the movement achieve
unimaginable proportions. In the three decades since then, the issue has been
focused in all human activities. Spaces have been conquered in education, labor
and health sectors, and when we celebrate the 30th anniversary of the AIPD, we
cannot leave aside from this report the importance and the contribution sports
had in the process of fighting for and consolidating the citizenship of persons with
disability in our country.
It is mandatory to make reference to the fight of the disabled, leaders and
important actors of this part of the story who by means of para-sports activities
opened roads fulfilling the important mission for the rights of the disabled in the
search of their effective inclusion and citizenship.
Later we shall mention some of these sports leaders who have been
responsible in Brazil for the first steps of a movement that was just beginning at
worldwide level. We have no doubts in stating that with courage, sight and
boldness, besides being co-responsible for our good position as a world power in
Para-Olympic games of 2008 in Beijing, they had a huge importance in the fight
that united and integrated different areas of disability in our country in the quest
for equal treatment and social justice.
But we have to mention the work of the hard working professionals from
different sectors involved with sports work, with emphasis on physical education
teachers. Usually working as silent volunteers, they represent a landmark in the
process that caused a turnaround in the understanding, perception and
acknowledgement on part of the majority of the Brazilian population about the
potential of persons with disabilities. Later we will mention facts and naming
those persons who have been so important in the process of changing paradigms
in sports activities for the disabled.
To remember the performance of the important leaderships of the
disabled and physical education professionals who have contributed In the
process is the way of paying homage and to record the facts and data of utter
importance for the development achieved in our country that allowed us to be
placed among the ten strongest powers in Para-Olympic games in the world.
In this historical summary, two fronts have acted in the work developed,
and both have been equally significant. On one side the entities of the disabled in
the fight for their rights and on the other, professionals of government
organizations who gave resonance and form to the claims with legal measures
that contributed to assure and guarantee the advancement of the proposed
actions and their development.
Some background on the movement
Initially it is necessary to redeem some facts regarding the origins of
Para-Olympic sports around the world and mainly in Brazil, where its story
started more than 50 years ago and is already full of fights, competitions,
conquests and glory.
Around the world
Sports for the disabled exist for more than a century. In the XVIII and XIX
centuries the contribution of sports activities was more geared towards
reeducation and rehabilitation of the disabled. The first news of sports clubs for
the deaf date from 1888 from Berlin, Germany.
After the First World War (1914/1918) physiotherapy and sports medicine
appeared as important resources in the recovery of internal and orthopedic
surgeries. The first records of sport for the disabled where found in 1918 in
Germany, where is mentioned that German soldiers who became physically
disabled during the war, would gather to practice shooting and archery. In August
1924 Paris held the Games of Silence, with the participation of 145 athletes from
nine European countries, for the first International competition for the disabled. At
the event, on August 24 was created the International Committee of Silent Sports
(Sports Silencieux) - CISS. In 1932, in England was created the association of
golf players who had only one arm.
In 1944, during the Second World War, the British government hired the
German neurosurgeon, Dr. Ludwig Guttmann to start rehabilitation work for
patients with spinal cord injuries, giving origin to the National Center for Spinal
Cord Injuries Patients in Stoke Mandeville, England/ Dr. Guttmann based his
medical and social rehabilitation work for war veterans using sport practices as
part of medical treatment.
The success of his work, motivated Dr. Guttmann to organize the first
competition for athletes in wheelchairs, and on July 29, 1948 - date of the
opening ceremony of the Olympic Games in London, took place the first edition
of the competition called Stoke Mandeville Games. In 1952, former Dutch
soldiers came to participate from the Stoke Mandeville Games, and with the
English, established the ISMGF - International Stoke Mandeville Games
Federation, giving start to the international sports movement that would became
the basis for the establishment of what is presently known as Paralympic sports.
In 1960, with the incentive of Dr. Antonio Maglio, director of the Center of
Spinal Cord Injured Patients from Ostio, Italy the organizing committee of the
Stoke Mandeville Games accepted the challenge and carried out the games in
Rome soon after the Olympic Games, using the same sports spaces and the
same format of the Olympic Games, 400 athletes from 23 countries tool part of
the first Paralympic Games. Since 1960 in Rome, and every 4 years, the games
have been carried out in a constantly more organized way and always with a
growing number of participants.
Until the 1972 games in Heidelberg, in Germany, only athletes in
wheelchair took part of the games. In 1976, In the Toronto, Canada, Paralympic
Games there was the inclusion of blind and amputee athletes, and as 1980, in
Arnhem, Holland, have been included athletes with brain palsy. The fourteenth
edition of the games happened in London from August 27 to September 10,
2012.
In 1976 happened the first Paralympic Winter Games in the city of
Ornskoldsvik in Sweden. Until 1992 the winter games took place in the same
year of the summer games. In 1994, the cycle has been adjusted and now the
games happen in the same year of the regular Olympic Winter Games. The 12th
edition will take place in the Russian city of Sochi in 2014.
In the 1996 games in Atlanta, USA, athletes with mental disabilities had
their first participation in the paralympic movement with athletic games as a
demonstration. In the Sidney 200 games in Australia, these athletes were
officially included in the following modalities: athletic games, basketball,
swimming and table tennis. Due to severe problems regarding irregularities and
frauds regarding the eligibility of the athletes present In Sidney for the basketball
games, the athletes with intellectual disabilities have been suspended from the
activities promoted by the IPC until a safe and efficient method to define their
eligibility could be found, and therefore they didn't take part from the Athens 2004
nor Beijing 2008 games. In London in 2012, under a new eligibility system,
athletes with intellectual disabilities have been included in the modalities of
athletic games, swimming and table tennis.
With the natural possibility of having disabled parsons practicing sports,
worldwide entities in different areas of disabilities were created with the
responsibility of managing and organizing events. In chronological order, we had
the establishment of the following entities:
1924 – CISS – Comité International des Sports Silencieux - Although
having taken part between 1986 and 1995 from the Paralympic
movement, CISS always carried out its games in an independent fashion.
Presently it is called ICSD - International Committee of Sports for the
Deaf and has as the Brazilian representative CBDS - Brazilian
Confederation of Sports for the Deaf.
1952 – ISMGF – International Stoke Mandeville Games Federation –
Initially established with the name of International Stoke Mandeville Games
Federation, it was focused on sports on wheelchair and its action
concentrated in basketball. Later it became known as ISMWSF –
International Stoke Mandeville Wheelchair Sports Federation. In
November 2004 ISMWSF and ISOD merged to create IWAS - International
Wheelchair and Amputee Sports Federation. Until 2006 Brazil has been
represented by Abradecar, and presently the Brazilian link is done directly
by the Brazilian Paralympic Committee.
1964 – ISOD – International Sport Organization for the Disabled – In
1960, with the support of the World Federation of Ex-Combatants, an
international work group was crated and resulted in the creation of ISOD International Sports Organization for the Disabled in 1964, the entity was
created as an International Sports Federation to serve the visually
disabled, amputees, paraplegic and those with brain palsy who were not
contemplated by the International Stoke Mandeville Games Foundation.
ISOD started its activities with 16 affiliated countries and was very
important for the work that resulted in the inclusion of the blind and
amputees in the Paralympic Games in Toronto, Canada, 1976, and of
brain palsy subjects in the Arnhem, Holland in 1980. With the evolution of
sports for the disabled and the creation of different specific entities by area
of disability, ISOD that has remained exclusively with the amputees,
merged in 2004 with ISMWSF, creating IWAS - International Wheelchair
and Amputee Sports Federation. During the existence of ISOD, its
representative in Brazil was Ande - National Association for Sports of the
Disabled.
1968 – Special Olympics International – Created by the Joseph
Kennedy Foundation, offers sports for the intellectually disabled without
worrying about performance. With its own organized system, where the
athletes of each sport are grouped by level of sports performance, it
allows all intellectually disabled persons, independently from their degree
of disability to take part in equal conditions. Due to the characteristics of
intellectual disability, the program has been the most adequate mode of
sports activities for this segment for more than 40 years. From 1990 to
2002, Brazil has been represented at the Special Olympics International
by the Brazilian Special Olympics Association.
1978 – CP-ISRA – Cerebral Palsy – International Sports and
Recreation Association – Based on the work developed by ISOD as of
1964, CP-ISRA was established in 1978 as a specific international entity
for the sports and recreation of persons with brain palsy. The affiliate
association in Brasil is Ande - National Association of Sports for the
Disabled.
1981 – IBSA – International Blind Sports Federation – After a 20 year
period in which this segment has been under ISOD, IBSA was created in
Paris specifically destined to sports for the blind and visually disabled. In
Brazil the affiliated entity is CBDV- Brazilian Sports Confederation for the
Visually Disabled.
1982 – ICC – International Coordination Committee of World Sports
Organizations for the Disabled – The quick development of sports for
the disabled created a large number of competitions in different areas,
enabling the creation of multi disabilities events, and among them, the
most important the Paralympic Games which after the Toronto games in
1976 included athletes with visual disabilities, blind and amputees and
from the games of Arnheim in 1980, those with brain palsy. After the first
Para Olympic Games in Rome, the following events although carried out
in the same year of the Olympic Games not always happened in the
same cities and physical spaces. With the definition of Seoul as host
country of Olympic Games in 1988, the local organizing committee
decided to carry out the Paralympic Games using the same spaces.
With this decision and due to the participation of different areas of
disabilities, so that each country could have a single representation in
the event that would encompass the disability areas involved, became
clear the need to create an entity to manage and carry out events with a
higher level of efficiency and which also would have a voice at the
International Olympic Committee. The four existing international entities
created in 1982 the ICC - International Committee for the Coordination of
World Sports Organizations for the Disabled that initially was made up by
the presidents of CP-ISRA, IBSA, ISMGF and ISOD, a general secretary
and an additional member. CISS and Inas-FID joined the committee in
1986.CISS decided to withdraw in 1995 and continued to organize its
event in an independent and isolated manner. Following its goals, ICC
with the help and support of the IOC and the local committee prepared
the Paralympic Games of Seoul, Korea in 1988 using officially for the first
time the same facilities of the Olympic Games promoted by the IOC
(International Olympic Committee).
1986 – Inas-FID – International Sports Federation for Persons with
Intellectual Disability – was created in Holland for high performance
sports for the intellectually disabled. Its Brazilian affiliate is Abdem Brazilian Association of Sports for the Mentally Disabled.
1989 – IPC – International Paralympic Committee – The International
Paralympic Committee is the main entity of the paralympic movement
and has the responsibility of carrying out the program at worldwide level.
It has been created in September 1989 in the city of Dusseldorf,
Germany by the existing entities at the time: CP-ISRA, IBSA, Inas-FID,
Isod and ISMWSF. On November 2 and 3 1991 in Budapest Hungary
was carried out the General Meeting that approved the first by-laws of
the IPC, and Brazil was there officially represented by the coordinator of
the Inter-ministerial Work Group in charge of the preparation of the
Brazilian team for the Paralympic Games of Barcelona in 1992. Since
1995, Brazil is officially represented at IPC by the CPB - Brazilian Para
Olympic Committee.
On June 19, 2001 an agreement has been signed between IPC and IOC
which decided that after the Beijing 2008 games, it would be mandatory
that the city which presents its candidacy for the Summer or Winter
Olympic Games encompasses in the same proposal the Paralympic
Games as well. Thus, what was being done informally since Seoul in
1988 became a pre-requisite in the candidacy of any town that wishes to
host the games. London 2012 will be the first event within these new
world standards.
In the choice of the city that will hold the summer Olympic and
Paralympic games of 2016, on October 2, 2009, in Copenhagen,
Denmark, during the 121st session of the International Olympic
Committee, the cities of Chicago, Tokyo, Madrid and Rio de Janeiro
reached the final phase, with the victory of the Brazilian candidacy. The
proposal of the city of Rio de Janeiro had as main highlights the
presentation regarding the Paralympic Games.
The stronger ties between the Olympic and Paralympic movements also
are seen in the different committees of ICO and IPC, where both entities
have a joint participation in the quest of improving worldwide sports.
1992 – WOVD – World Organization Volleyball for Disabled –The
sitting volleyball games for the disabled appeared in Holland in 1956 and
have been accepted as a sport in the Isod 1978 program. WOVD has as
Brazilian representative, ABVP - Brazilian Association of Paralympic
Volleyball.
1993 – IWBF – International Wheelchair Basketball Federation –
Created after a division of ISMG, is internationally in charge of
wheelchair basketball. Its Brazilian affiliate is CBBC - Brazilian
Confederation of Wheelchair Basketball.
In Brazil
The initial landmark of the sports movement for the disabled in Brazil
took place with the exhibition of the wheelchair basketball team "Pan Am Jets"
composed of disabled employees of Pan American World Airlines. They made
two presentations in Brazil, in November 1957 at the Ginásio do Ibirapuera in
São Paulo and Ginásio do Maracanãzinho in Rio de Janeiro. The American
athletes came to Brazil as a result of the contacts of Sérgio Seraphim Del
Grande, one of the first names of the Brazilian Paralympic sports.
In 1958, we had the establishment of the first sports clubs for the disabled in
Brazil: in the city of São Paulo CPSP - São Paulo Paraplegics Club, an initiative of
Sérgio Seraphim Del Grande; and in Rio de Janeiro by Robison Sampaio de
Almeida, another important name in the Brazilian Paralympic Games.
From the pioneers CPSP and Optimism Club in 1958 until today were
created hundreds of sports entities for the disabled. These associations and
clubs, as in every sports system are the grounds were sports are really practiced
from initiation to highest level competitions, without their existence, without the
silent work and complete dedication, in most cases of voluntary nature, of its
managers and technicians, we wouldn't have athletes creating the story of
adapted sports in our country. These entities went much beyond the sports
issues. They became a forum for meetings and discussions for the significant
improvement of the inclusion process and citizenship.
Image: Color picture. Five athletes on wheelchairs and two standing athletes pose for a picture with the flag of the state of São Paulo
and a poster with the words: Paraplegics Club of SP.
Inscription: Moacir, Cidinha, Helô, Bia and Xavier - in front of the Sports Gymnasium in Rio de Janeiro - June 1985.
Digital collection: Memorial da Inclusão
Donation: Heloisa Chagas
The first twenty years of the Brazilian movement had as main factors the
dedication and abnegation of some athletes, managers, entities and physical
education professionals who didn't measure efforts in order to guarantee
sustainability to the still weak and incipient Paralympic sports in our country. Until
the end of the 1980s, the movement was heroically conducted and was able to
grow and become deeply rooted grace to a group of individuals to whom our
homages and thanks are addressed. Without forgetting the attention due to
others, we mention four persons who aren’t with us any longer and who became
an excellent symbol of this era of battles: Aldo Miccolis, José Gomes Blanco,
Robinson Sampaio de Almeida and Sergio Seraphim del Grande.
At the end of the 80's, in order to follow the International happenings that
signaled a new way to manage Paralympic sports and to adequately organize
the Brazilian team at the Seoul Paralympic Games, in 1988, the existing
domestic entities: ABCD - Brazilian Sports Association for the Blind chaired by
Mario Sérgio Fontes; Abradecar - Brazilian Association for Wheelchair sports,
chaired by José Gomes Blanco. Ande - the National Association of Sports for the
Disabled, chaired by professor Aldo Miccolis, requested support for the Federal
Government through the Physical Education and Sports Secretariat from the
Ministry of Education: Seed-MEC and the National Coordination for the
Integration of the Disabled - Corde.
At a meeting held at Palácio do Itamaraty in Rio de Janeiro on April 11,
1988, the late José Gomes Blanco, a stronghold of the Brazilin paralympic sports
and at the time president of Sadef-RJ and Abradecar, proposed the creation of
the Brazilian Paralympic Committee. After consultations with COB - Brazilian
Olympic Committee and CND - National
Sports Council, a MEC - Ministry of Education committee in charge of the
regulation of Brazilian sports, it was ascertained the legal impossibility of creation
of the committee as function of the restrictions of the Constitution in force, law
6251 in 1975, and Decree 80228 from 1977 that gave legal support to the sports
practice in our country.
As an alternative to the problem and by initiative of Corde, on June17,
1988 by means of the inter-ministerial Decree No, 1207/88 - Sedap - Public
Administration Secretariat, was created the inter-ministerial Work Group made up
by two representatives of the federal government, one from Seed/MEC and one
from Corde and by the presidents of ABDC, Abradecar and Ande. The group was
composed by professor Aldo Miccolis, President of Ande , José Gomes Blanco,
President of Abradecar, Mario Sergio Fontes President of ABDC, professor
Juarez Soares representing Seed/MEC and professor Vanilton Senatore,
coordinator of Corde. Under the coordination of the Corde representative, the
inter-ministerial work group assumed the whole responsibility for the preparation
and participation of the Brazilian delegation in the Seoul games, officially
assuming the role of NPC-Brazil: National Paralympics Committee - Brazil.
The actions developed by GT were officially presented to the public at a
ceremony carried out on August 11, 1988 at the main hall of Itamaraty Palace in
Rio de Janeiro, an event that gathered the sponsors, press and national sports
idols such as Roberto "Dynamite", a soccer player, athletes from the Brazilian
Olympic team, basketball player "Magic" Paula, Ana Richa, from the volleyball
team, Robson Caetano from athletics and the dear "João do Pulo"- Carlos de
Oliveira. During the ceremony was officially presented the proposal for the
creation of the Brazilian Paralympic Committee, being agreed that actions would
be intensified after the new Constitution would be enacted and which at the time
was being debated at the Congress, also the process of discussing amendments
of Law 6251/75 and Decree No. 80228/77 was started and the later process was
finalized with the enactment of Law 8672 of 1993.
The results achieved by the Brazilian team at the Seoul-88 Paralympic
Games with the winning of 27 medals: 4 gold, 9 silver medals and 14 bronze
medals, contributed to strengthen and to disclose the Paralympic movement In
Brazil, being fundamental for the formulation of the model of sports management
adopted by the Brazilian government elected in 1989.
When president Fernando Collor took office in March 1990, he withdrew
sports from the Ministry of Education and created the Sports Secretariat of the
Presidency of the Republic - Sedes/PR, precursor of the present Ministry of
Sports, inviting as its first manager, a great idol of the Brazilian soccer: Arthur
Nunes Coimbra known as Zico. Sedes/PR had only two departments: Professional
and Not Professional Sports Department - Depro and the Sports Department for
the Disabled - Deped. To manage Deped, Zico invited professor Vanilton
Senatore.
Image: Document extracted from the Official Gazette of the Union
Section II – Official Gazette – Monday, June 20, 1988
Public Management Secretariat, Minister’s cabinet.
Inter-ministerial Administrative Rule No. 1207 from June 17, 1988
The State Minister head of the Public Management Secretariat from the Presidency of the Republic and the State Minister of
Education, using their powers and WHEREAS according to what disclosed in clause 3 of Decree 93481 of October 29, 1986,
combined with clause 2 of Decree 95816 of March 10, 1988, it befalls to the State Minister Head of the Public Management of the
Presidency of the Republic, by means of joining efforts with other Minsters to carry out the higher level of coordination in the Federal
Administration of the issues, activities and measures that regard persons with disabilities, decides:
Clause 1: Is created an Inter-Ministerial Work Group, in charge of preparing and making feasible the participation of the Brazilian
team at the 8th Paralympic Games to be held in Seoul, Korea;
Clause 2: The Work Group will be composed as follows: I – 1(one) representative of the Coordination for the Integration of Persons
with Disabilities – CORDE/SEDAP/PR: II – 1 (one) representative of the National Association for the Sports of the Disabled –
ANDE; III – 1 (one) representative of the National Association for the Sports of the Intellectually Disabled. IV – 1 (one)
representative of the Brazilian Association of Wheelchair Sports, Abradecar; V – 1 (one) representative of the Brazilian Association of
Sports for the Blind, ABDC;
Sole Paragraph: the representative from CORDE/SEDAP/PR will carry out the coordination of the Work Group.
Clause 3 - The Work Group will have its activities finalized and will be dissolved at the end of the games.
Clause 4 - This Administrative Rule will enter in force on the date of its publication, being revoked any provisions to the contrary.
Aluizio Alves, Head Minister of the Public Administration Secretariat of the Presidency of the Republic.
Hugo Napoleão. Minister of Education
Inscription: Inter Ministerial Administrative Rule No. 1207 of June 17. 1988.
Digital collection: Memorial da Inclusão
Donation: Vanilton Senatore.
With the inclusion of Deped - Sports Department for Persons with Disabilities in
the structure of Sports Secretariat of the Presidency of the Republic, a novel fact
in the Brazilian political history, the Union, besides acknowledging the importance
of sports for the disabled, put the issue in the agenda of discussions and
guaranteed a budget for its support and development. Certainly we have to
stress that the decision of the government to include Deped in its sports structure
was the result of a hard work carried out by the leaderships of the movement of
the disabled which was gaining strength day by day since 1981.
The proposal of acknowledgment and support of sports for the disabled
was presented in August 1989, during the voting campaign to all candidates to
the presidency who took part in the meeting carried out by the Brazilian Olympic
Committee at the Great Hall of Fluminense Soccer Club in the city of Rio de
Janeiro. José Gomes Blanco, Luis Cláudio Alves Pereira, Iranilson Silva,
Sebastião Neto, Mario Sergio Fontes, Alaor Boschetti among other leaders of the
movement with their tireless coadjutants as professor Aldo Miccolis, João Batista
Carvalho e Silva, Antônio João Menescal Conde, Sergio Coelho were among the
responsible for this presentation of candidates.
Zico, who besides being a friend and an admirer of the work of José
Gomes Blanco, was an enthusiastic supporter and stimulator of paralympic
sports; in 1991 he was responsible for the Inclusion, for the very first time, of a
special budget for the sports of the disabled in the Union's budget. Zico has also
coordinated the process of elaboration of the Bill for the regulation of Brazilian
sports, fitting it to the new Constitution; the bill was sent to the Congress on April
1991 and enacted as Law No, 8.672/93.
Image: Color Picture. Zico wearing suit surrounded by children and young athletes wearing white jackets with blue, yellow and green
strips.
Inscription: Zico follows the Brazilian team to the opening of the World Summer Games of the Special Olympics in Minneapolis,
UAS, 1991.
Digital collection: Memorial da Inclusão
Donation: Vanilton Senatore
The newly created secretariat in January 1991, still under Law 6251/75
and Decree No. 80228/77 that prevented actions for the establishment of the
Brazilian Paralympic Committee, recreated the Inter Ministerial Work Group
aiming the preparation and participation of the Brazilian team to the Barcelona
1992 Para Olympic Games.
The same format adopted in 1988 was maintained with the participation
of the two representatives of the Federal Government, Sedes/PR and Corde, and
the three presidents of the national sports for the disabled entities involved in the
games. ABDC, Abradecar and Ande. The inter-ministerial work group had as
members professor Aldo Miccolis, president of Ande, José Gomes Blanco,
president of Abradecar, Cezar Gualberto, president of ABDC, Paulo Roberto da
Costa Beck, representing Corde and professor Vanilton Senatore, director of
Deped, as representative of Sedes/PR who coordinated the activities of the work
group.
With the experience acquired in 1988 the Work Group was responsible
for the coordination of the preparation and participation of the Brazilian team in
the Barcelona-1992 Paralympic Games, working for 18 month in close
cooperation with the three national entities. In Barcelona, the
Brazilian
paralympic athletes conquered seven medals: three gold and four bronze
medals. The work developed by the different Work Groups from 1988 to 1991/92
were based on the standards and procedures adopted Internationally by ICC and
IPC and were the platform for a new positioning of the Brazilian Paralympic
movement, allowing local entities to mirror international trends and the
experience acquired in the preparation and participation for the 1988 and 1992
games, to create CBP - Brazilian Paralympic Committee.
For the historical record it is important to remember that while Law
6.251/75 was in force, the creation of leading sports entities for the disabled
depended from the previous authorization of CND - National Sports Council, that
issued its decisions authorizing their existence based on Decree No. 80.228/77
that had the following wording in its clause 186: "The organization of leading
entities of sports activities practiced by paraplegics, deaf, blind or mentally
disabled will be established according to the standards established by the
National Sports Council, and this Council, whenever convenient will celebrate
agreements with other Ministries or entities related to it, also to obtain funds"
Below, in chronological order are the local entities that have been
created under the leadership of persons involved In the rights of access to sports
practices by the disabled.
1975 – Ande – National Sports Association for the Disabled – In
1975, on the plane in which was flying the Brazilian delegation that was
returning from the International Games in Mexico, was created Nade,
with the role of aggregating athletes from every area of disability. Located
in the city of Rio de Janeiro, it had its great leader and first president,
professor Aldo Miccolis. It was internationally affiliated to CP-ISRA, and
domestically to CPB, being in charge of sports for the paralyzed and les
autres.
1982 – Abradecar – Associação Brasileira de Desporto em Cadeira
de Rodas (Brazilian Wheelchair Sports Association)– On March 31st,
1982, according to Resolution 03/82 from CND - National Sports
Committee has authorized the establishment of Abradecar, founded on
December 09, 1984 which had as first president José Gomes Banco, one
of the most respected names among disabled persons active in sports
and in the Brazilian movement pro disabled.
1982 – CBDS – Brazilian Sports Confederation for the Deaf –
Decision nº 07/82, of September 18, 1982 from CND, authorized the
creation da CBDS. On November 17, 1984, at Ines auditorium – Ines =
National Institute for the Education of the Deaf - CBDS Is created. Its first
president was Mário Júlio de Mattos Pimentel.
Although created in 1984, the history of CBDS started much earlier, in
the 50's with the intense movement of creation of an association of the
deaf. In the beginning such associations were spaces for recreation and
leisure activities, but with time, became important points of political
articulations and sports practices. However, at the time there was not
centralized organization and competitions were very much focused on
soccer.
The sports practices at the associations became consolidated along the
years and created the need to organize a sports entity for the deaf.
Besides several regional championships that took place every year,
CBDS made history at international championships. Presently the
Brazilian sports for the deaf has won two South American male soccer
championships (1989 and 1995), three times South American
championships of female volleyball (1987,1991 and 1995), twice the
South American table tennis championship (1988 and 1992), and the
South American Athletics Championship (1992). A good number of these
victories was achieved during the term of office of Mario Julio Pimentel,
one of the persons responsible for the consolidation of the entity. CBDS
is an affiliated to ICSD - International Committee of the Sports for the
Deaf, Inc.
1984 – ABDC – Brazilian Sports Association for the Blind –.
According to Decision 14/83 enacted by CND on December9, 1983 was
authorized the creation of ABDC. With the creation of the entity, sports
for the blind and visually disabled was no more directed by Ande, and
had its own management. Professor Aldo Miccolis chaired the entity until
the election of its first president, Vital Severino Neto.
1985 – Abdem – Brazilian Sports Association for the Mentally
Disabled –Decision 04/84 published by CND, authorized the creation of
Abdem under the responsibility of National Federation of APAEs.
However the entity only started it’s activities in 1989. Its first president
was Dr. Nelson de Carvalho Seixas.
1990 – ABDA – Brazilian Association of Sports for Amputees –
Created in 1990, with the purpose of developing the sports of amputees,
has its role basically focused in soccer, for other sports for amputees are
already being dealt with by different entities. ABDA was one of the
entities present at the creation of the Brazilian Paralympic Committee in
1995 and its first president was João Batista Carvalho e Silva.
1990 – Aoeb –Special Olympics Association Brazil – Created in
Brasília, DF, in December 1990 was until September 2002 the official
Brazilian representative at SOI - Special Olympics International,
developing sports programs for persons with intellectual disabilities
geared to participative sports with worrying about high performances. Its
first president was Carlos Roberto Bernardes.
1995 – CPB – Brazilian Paralympic Committee – Established in
Niteroi, RJ, on February 09, 1995, had as its first president João Batista
Carvalho e Silva. It functioned in Niterói until 2001, when it was
transferred to its own headquarters in Brasília, DF. The Brazilian
Paralympic Committee is affiliated to IPC - International Paralympic
Committee, where it represents Brazil.
1997 – CBBC – Brazilian Confederation of Wheelchair Basketball –
Created in 1997, CBC started in Brazil the international trend of entities
separated by sports modalities and not by disabilities, such as wheelchair
basketball which stopped being managed by Abradecar. CBBC is one of
the entities affiliated to CPB and internationally related to IWBF International Federation of Wheelchair Basketball. Its first president was
Gilson Ramos dos Santos, known as Doinha.
2000 – CBTMA – Brazilian Confederation of Adapted Table Tennis –
CBTMA was created in May 2000 with the purpose of promoting and
fostering adapted table tennis practiced by athletes with physical and
motor disabilities. Keiki Shimomaebara, a paralympic tennis player was its
first president. With its affiliation to ITTF - International Table Tennis
Federation - in 2006, CBTMA was dissolved and Adapted Table Tennis
started to be managed by CBTM - Brazilian Table Tennis Confederation.
2003 – ABVP - Brazilian Association of Paralympic Voleyball – Is
affiliated in Brazil to CPB and abroad to WOVD - World Organization of
Voleyball for the Disabled. Its first president was João Batista Carvalho e
Silva.
The characters of this history
It is not possible to talk or write about sports for the disabled in Brazil
without revering persons who placed their hearts and minds service this cause.
They are leaders who recorded their names in the history of sports in Brazil,
defying prejudices and fighting for rights and equality, not measuring physical,
personal and financial sacrifices. They were fighters of good fights, heroes of a
war considered by many invincible and inglorious. When we celebrate the 30th
anniversary of the International Year of Persons with Disabilities, what we see
and find in the sports sector in our country for this important segment of the
population, evidences that they were more than visionaries, they were ahead of
their time. Enlightened persons, not always acknowledged, but above all winners.
Therefore, when we pay this homage, more than mentioning the names
and conquests, we want to make the record of the feats that these Brazilian left
as their contribution to a fairer country, more fraternal and more solidary. A
country where diversity is respected, opportunities are not denied, the right to
come and go to be effectively universal and a citizenship that encompasses all its
inhabitants. We may say with great conviction that we are happy of having
Brazilians of this quality among us.
To symbolize the celebration of the 30th anniversary of the International
Year of Persons with Disabilities we will be mentioning with more details eight
great personalities of adapted sports, and will complement the list with 22 names
of equal importance. Certainly many persons not herein mentioned were
important in this movement and we extend to them our appreciation and thanks.
SÉRGIO SERAPHIM DEL GRANDE – A young sportsman from São
Paulo who suffered an accident in 1951 and went to US in search of treatment.
At the Kessler Institute in Wiste Orange, New Jersey, he became acquainted to
rehabilitation through sports. Sergio returned to Brazil in 1955 and next year
introduced to Dr. Renato Bonfim, one of the founding members of AACD Association for the Disabled child of São Paulo, his experience with rehabilitation
through sport. Dr. Bonfim enthusiastically supported the idea, and gave Sergio
much support to enable him to bring the US Pan Am Jets wheelchair basketball
team for several presentations in Brazil. With the success achieved with the
presentations and with the incentive of friends, Sergio created the first Brazilian
Wheelchair Basketball team called "Wheelchair Aces". The first public exhibition
as in February 1958 at the Sports Arena of the "Conjunto Desportivo Baby
Barioni", Água Branca, São Paulo,
Sergio Seraphim del Grande's next challenge was the creation of a club
focused in sports for the disabled. On July 28, 1958 under the chairmanship of
Dr. Paulo Machado de Carvalho, took place the meeting for the creation of CPSP
- Paraplegics Club of São Paulo.
In more than 50 years of work, hundreds of persons passed through CPSP, who
through sports had an extra incentive in the rehabilitation process, many became
champions in their sports, but certainly all were winners. The first elected board
had Dr. Fernando Boccolini as chairman and Sergio Seraphim Del Grande as
vice chairman.
ROBISON SAMPAIO DE ALMEIDA – Still young, the Alagoas native
living in Rio de Janeiro became ridden to a wheelchair after suffering a tragic
accident in the US. In 1958, Robson founded in Rio de Janeiro the Optimism
Club, creating a wheelchair basketball team, as the result of his rehabilitation
treatment made in the US. In 1976, at the Toronto Paralympics Games, Robson
Sampaio de Almeida and Luis Carlos Curtinho conquered the boccia silver
medal, being the first Brazilian to win medals at the Paralympic Games. Robson
Sampaio was chairing the Optimism Club when he passed away in 1987.
JOSÉ GOMES BLANCO – A native from Rio de Janeiro, fan of Botafogo,
young José Gomes Blanco was a well succeeded amateur athlete, a goal keeper
from the Futsal Team of Rio de Janeiro and from the Brazilian team, when in 1958
was the victim of a gunfire accident. Friend of the best soccer players at the time,
among them Nilton Santos, Garrincha and Didi from Botafogo Blanco received
much support during his rehabilitation process at Barata Ribeiro Hospital in Rio de
Janeiro. His strength as sportsman besides helping the treatment made him get
acquainted with and participated of adapted sports such as swimming and
wheelchair basketball.
With strong willpower and capacity to gather people, he leaded the
establishment process of Asdef - Society of Friends of the Disabled in Rio de
Janeiro, and presided this entity his whole life. He was one of the important
names in the fight for the rights of the disabled in Rio, integrating the coalition of
entities at the International Year of Persons with Disabilities. He founded and was
president of Abradecar - Brazilian Association of Wheelchair Sports and through
his contacts and friendships, among other feats was able to get jobs for several
wheelchair users at Data Prev - a license so that Sadef and other entities could
manage Federal Savings Bank lottery houses as well as to sell telephone tokens.
Between 1990 and 1992, invited by Zico, then Sports Secretary of the
Presidency of the Republic, he carried out the coordination of the regional office of
Sedes in Rio de Janeiro, as President of Abradecar and member of the
Interministerial Work Group, the Brazilian Team at the Seoul Paralympics Games
- 1988 and Barcelona - 1992. He passed away In 206 and continues to be
remembered with much affection and respect from all who met him and had the
opportunity to live with him and for those who really know the story of paralympic
games in our country.
Image: Color picture. A gray haired man in a wheelchair close to a desk.
Inscription: BLANCO - At the Sedes/PR in Rio de Janeiro, 1991.
Digital collection: Memorial da Inclusão.
Donation: Vanilton Senatore
All persons who one day were part or still have Sadef/RJ in their hearts,
and to those who in the 1960, 1970, 1980 and till mid 1990's lived, worked,
participated in sports activities through Sadef, are aware that Sadef created and
shaped a pro-disability culture in the whole state of Rio de Janeiro and Brazil.
Therefore, with this homage may José Blanco we want to have his memory
always alive within us.
LUÍS CLÁUDIO ALVES PEREIRA – Born in Rio de Janeiro, became
tetraplegic in 1977 at 16, in an accident practicing judo. Luis Cláudio started
his life in the movement of the disabled during the process of his rehabilitation.
According to Sadef/RJ guidelines, he started training athletics with Sandra
Peres. At 27, took part in the Paralympics of Seoul -1988, where he was the
star of the Brazilian delegation, winning three gold medals in the disc, darts
and weight throwing, establishing three records, two world records in dart and
weight and one paralympic record in disc throwing.
Luis Claudio has always been very Involved In the issues of rights of the
disabled and an active political militant, taking part in voting campaigns as
candidate of this native state, Rio de Janeiro. As psychologist he specialized in
Sports Psychology, presided the Municipal Council in the Defense of the
Disabled in Rio de Janeiro, was president of Abradecar - Brazilian Association of
Wheel Chair Sports, president of the Pan American Wheel Chair Sports
Committee and member of the National Athletes Council related to the Ministry of
Sports, presently he is vice-president of the Brazilian Paralympic Committee.
SENTIL DELATORRE – As student and teacher of Ines - National
Institute of Education for the Deaf, Sentil Delatorre always has been a leader of
the deaf in Rio de Janeiro, having presided many entities and being the founder
of the Rio Federation of the Deaf-Mute Individuals in January 1959,
MÁRIO JÚLIO DE MATTOS PIMENTEL – One of the most active
leaders of the movement of the deaf in São Paulo, always tuned to sports
authorities. Mário Júlio was the first president of CBDS, managing the entity for
over ten years.
MÁRIO SÉRGIO FONTES – After an accident in Paranaguá, PR, that
blinded him. Mário Sergio made his rehabilitation at Padre Chico Institute in São
Paulo, when he was revealed as a sports talent. He was an important athlete in
the Brazilian Soccer Team with Five Participants and Athletics. A person ahead
of his time, was the first Brazilian blind person to pass an entrance examination
to the Physical Education School of the Federal University of Paraná. He worked
as sports technician as the Sports Secretariat of the State of Paraná between
1982 and 1986. As an athlete he took part in the Paralympics of 1984 and 1987;
became president of ABDC - Brazilian Association of Sports for the Blind. Was
part of the Inter Ministerial Work Group created in June 1988 to coordinate the
participation of Brazil in the Seoul Paralympics of 1988.
VITAL SEVERINO NETO – Born in Campina Grande and blind since 8
years of age, Vital graduated as lawyer and carried out his profession for two
years before entering public service as an employee of the Federal University of
Uberlância. With a strong personality, always showing leadership skills, Vital
started in sports as athlete and had a decisive role in the creation of Adevitrin
(Association of the Visually Disabled of the Minas Gerais Triangle Region, was
president of the Brazilian Association of Sports for the Blind - ABDC and one of
the founders of the Brazilian Paralympic Committee where he acted as general
secretary from 1995 to 2000 and president during two terms of office, 2001 and
2008. He was present at the following Paralympics: Atlanta – 1996, Sidney 2000,
Athens 2004 and Beijing 2008.
In alphabetic order, mixing names from the past and young talented
individuals, we have the 22 people that complete the list of 30 persons being
praised in this edition: Adria Rocha dos Santos, Antônio Tenório da Silva,
Beatriz Pinto Monteiro, Celso Lima, Claudionor Silva, Clodoaldo Silva,
Daniel Dias, David Farias Costa, Fábio Ricci, Francisco de Assis Avelino,
Irajá de Brito Vaz, Iranilson (Tita) Silva, José Carlos Moraes, Keiki
Shimomaebara, Lucas Prado, Márcia Malzar, Paulo Cesar Fernandes,
Raniero Bassi, Sebastião da Costa Neto, Sérgio Ricardo Gatto dos Santos,
Suely Guimarães, Therezinha Guilhermino.
The coadjutants of this history
Until the 1970's the Physical Education professionals were mostly
coming from higher education institutions that ignored, almost completely the
possibilities of the disabled having access and benefitting from the practice of
sports and leisure activities. This fact may be evidenced in documents from the
beginning of the 1980's, among them the General Guidelines for Physical
Education/Sports - 1980/85 published by MEC - Ministry of Education and
Culture where the only two references to persons with disabilities are on page 24
with an analysis of problems divided by areas, where we read "inexistence of
agencies to train experts on physical activities for the disabled". The second
mention of the document is found in the guidelines on page 27: "develop studies
focused on the implementation of agencies to train experts in physical activities
for the disabled".
As a consequence of this academic training that was in force until the
mid-1990's, we still face in primary and secondary school the difficulty of many
Physical Education teachers in accepting and working with the diversity that the
disabled students may present; but doubtlessly the actions carried out in these
last 30 years have been and continue to be Important to break paradigms and
eliminate prejudices by means of a complete and inclusive experience that
necessarily and evidently starts at school.
From the experience of living in contact with children, youngsters and
teenagers with or without disabilities since school years, appears the best
opportunity to revert at the right time a situation that since long only reinforces
prejudices. When we offer sports practices to the disabled, physical education
teachers will be eliminating and substituting myths: from inability to ability, from
low self-esteem to positive self-esteem, from exclusion to inclusion. Certainly the
biggest victory of this process will be the contribution in having citizens who are
solidary, fair and aware. In this context, sports are one of the most important
tools to achieve social Inclusion.
ALDO MICCOLIS
Without a shadow of doubt, we may state that Aldo Miccolis is one of the
cornerstones of the paralympic movement in Brazil. Since 1958, he fought
fiercely in the sense of disclose sports and right to citizenship of disabled persons
in Brazil. At the time, nothing consistent happened in that area. He created two
wheelchair basketball teams and travelled around the country, visiting more than
one hundred cities making exhibitions and lectures. This real story started on
April 1sr (liar's day) when Clube do Otimismo "Optimism Club" was created by
Robson Sampaio de Almeida, wheelchair user, Baptist, born in the state of
Alagoas and living in Rio de Janeiro. In order to develop his social and sports
project, Robson invited young Alfo Miccolis, also a Baptist, 26 years old who at
the time was a sports coach in the Army to make his dream come true.
In 1965 Aldo cooperated with the creation of the Paraplegics Club of Rio
de Janeiro, today known as Caif - Center for the Support of the Physically
Disabled) and often times opened his home in the neighborhood of Piedade, RJ,
to have young women with different disabilities to create the female sector of the
entity
In 1975, in the airplane in which the Brazilian team was returning from
international games in Mexico, was created Nade - National Association of
Sports for the Disabled, that he presided for 25 years. In 1976, Aldo Miccolis
assumed the direction of national sports for the disabled.
Aldo Miccolis was married to Mariuza Fiuza Miccolis, and was the father of
Shirley, Rosane, Mario José and Madalena; he had seven grandchildren and
nine great grandchildren. Mariuza uses a wheelchair, is a church singer and with
the husband visited different churches sharing her faith in Christ and teaching the
audience about disability. Aldo passed away on December 14, 2009.
Writing this brief summary on the life of Aldo Miccolis, our intention is to
praise all professionals from different areas that gave their time, skills and most
of all the commitment that helped to create what we have today in Brazilian
adapted sports. In the same line of persons with disabilities, we list 29 names,
mixing past and present times that complete the group of 30 honored
individuals: Alberto Martins da Costa, Aldo Carlitos Potrich, Amaury
Veríssimo, Andrew Willian Parsons, Antônio João Menescal Conde,
Carmelino Souza Vieira, Celby Vieira, Edilson Alves da Rocha, Elizabeth de
Mattos, Franklin Ronaldo Martins Tavares, Gilson Ramos “Doinha” dos
Santos, Ivaldo Brandão, João Antonio Bentim, João Batista Carvalho e
Silva, Pedro Américo de Souza Sobrinho, Renausto Alves Amanajás,
Roberto Vital, Sandra Perez, Sheila Salgado, Sérgio Coelho de Oliveira,
Sérgio José de Castro, Sérgio Miranda, Vilson Fermino Bagatini, Zaira do
Nascimento Melo.
Brief chronology of Adapted Sports in Brazil
1957
– Exhibition of the US Wheelchair Basketball Team, the Pan Am Jets in
the Ibirapuera Arena in São Paulo and Maracanãzinho in Rio de Janeiro.
1958
– April: Creation of Optimism Club (Clube do Optimismo) in Rio de
Janeiro.
– July: Creation of the Paraplegics Club of São Paulo.
1959
– January: Creation of FCSM - Rio Federation of Deaf-Mute, in Rio de
Janeiro. Leaded by Sentil Delatorre, the entity has been recognized by
CND nad CBF (Brazilian Soccer Comfederation).
– Agosto: In São Paulo happened the first wheelchair basketball game
between two Brazilian teams, CPSP of São Paulo and Optimism Club
from Rio de Janeiro. The game happened at Baby Barioni Sports Center
in São Paulo.
1963
–The Brazilian Athletes of the Optimism Club of Rio de Janeiro, Robson
and Arnaldo took part for the first time from the US National Games,
being invited by the US Veterans Association, competing in bow and
arrow, table tennis, athletics and bowling.
1964
– Creation of Caif - Center for the Support of the Physically Disabled in
Rio de Janeiro by Abraão Gomes de Souza.
- José Goes Blanco, with the help of Professor Aldo Miccolis, creates
Sadef/RJ.
1969
– Created the first Brazilian delegation of wheelchair athletes to compete
at the 2nd Pan American Wheel Chair Games in Buenos Aires, with
athletes from Rio and São Paulo, where Brazil won 17 medals
1972
– Athletes from Optimism Club and Paraplegics Club of Rio de Janeiro
nad Paraplegics Club of São Paulo competed in the 1972 Paralympic
Games in Heidelberg, Germany.
1974
- First Brazilian participation at the Stoke Manville World Games.
- Decision No. 1002/74 from the Federal Council of Education
approaches for the first time the issue of Physical Education in the
process of global education of persons with mental disabilities (passible
of being trained and educated) related to special treatment in clause 9 of
Law 5.692/71
1975
- 1st National Wheelchair Games - held at the facilities of the Naval
School in Rio.
- Participation in the 5th Pan American Wheelchair Games in Mexico with
two teams, one from Rio and one from São Paulo.
1976
- In 1976 Brazilian won their first Paralympic medals: Robson Sampaio
de Almeida and Luis Carlos Curtinho won a silver medal in boccia,
reaching the 31st place in the final medals table.
1978
- Through Ande, Brazil held the 6th Pan American Wheelchair Games in
Rio de Jáneiro, with the participation of 1,000 athletes from 15 countries.
- 1st National Olympics of APAEs and Specialized Schools in Natal, Rio
Grande do Norte.
1982
– The Physical Education and Sports Secretariat from the Ministry of
Education and Culture - Seed/MEC publishes the first book on Physical
Activities and Sports for the Disabled, written by professor Vilson
Fermino Bagatini from Rio Grande do Sul.
1984
- Paralympic Games were carried out in two venues: New York, USA, for
the brain and brain palsy subjects and Stoke Mandeville for the physically
disabled. Anaelise Hermany, blind, wins the silver medal in the 100 meter
sprint and a bronze medal In the 800 meters race; and Marcia Malsar
who has brain palsy won the gold medal in 200 meters and bronze In 60
meters sprint. Anaelise and Marcia are the first two Brazilian women who
won paralympic medals. Luis Claudio Alves Pereira won the gold medal,
and broke the world record for weight throwing at Stoke.
1985
– Physical Education professionals disclose the "Batatais Letter"
Image: Blue book cover containing in the inferior left corner, in black and White, the drawing of 3 smiling boys in uniform with a ball
under the right arms.
Inscription: First publication from the Ministry of Education and Culture on Physical Education for the Disabled by Vilson Bigatini
was distributed in 1982 to all Physical Education schools as a result of the International Year for persons with Disabilities.
Digital collection: Memorial da Inclusão
Donation: Vanilton Senatore
Image. Four pages document.
Batatais Letter.
This letter constitutes a synthesis of the issues analyzed by the participants of the “Meeting for the Evaluation of the Sub Program on
Preparation of Human Resources in Physical Education for Special Education” and has the purpose to stimulate thoughts and the
proposal of strategies of action for Physical Education, Sports and Leisure activities for the disabled.
Whereas:
- Unesco establishes that the practice of Physical Education is a fundamental right of everyone and that programs should prioritize the
less favored groups in the society (International Letter of Physical Education and Sports, 1978);
- about 10% of the Brazilian population has some type of disability and almost all have no access to Physical Education, Sports and
Leisure;
- Physical Education, Sports and Leisure have an important role in the process of education, prevention, training, rehabilitation and
socialization of the disabled;
- Physical Education and Sports evidence the potential of the disabled, having a positive influence in their self-image and increases
their personal value in the society;
- More and more the disabled are demanding participation in Physical Education, Sports and Leisure activities;
- It is the Government’s duty, to promote socialization, health, education and leisure of the disabled;
- Public entities in charge of health policies and hospital complexes in their majority do not take into account the importance of
Physical Education, Sports and Leisure to the disabled;
- Public entities in charge of Physical Education Sports and Leisure policies, in their majority, are being neglectful regarding the issues
of the disabled;
- The vast majority of public and private schools do not give the disabled an opportunity to practice physical education;
- Sports and Leisure Clubs are not meeting the needs of their associates who are disabled;
- The private sector is not assuming its responsibility in promoting the physically disabled;
- There is a lack of skilled professionals in the field of Physical Education, Sports and Leisure activities for the disabled;
- The vast majority of Human Resources acting in the field of physical education, sports and leisure for the disabled has no
qualification to carry out these activities;
- The physical education teacher is not being included in the interdisciplinary teams in health and special education institutions;
- With rare exceptions, Physical Education schools are not training professionals to act in Physical Education, Sports and Leisure for
the disabled;
- There is lack of documents and bibliographic sources related to Physical Education, Sports and Leisure activities for the disabled;
Image. Continuation...
- The number of researches on Physical Education, Sports and Leisure for the disabled in Brazil is negligible;
- There is a lack of facilities and didactic resources for teaching and practice of Physical Education, Sports and Leisure activities for
the disabled:
Therefore, it is suggested:
- Development of Physical Education, Sports and Leisure programs for the disabled by the Federal, State and Municipal governments;
- A higher level of integration among the different government sectors that serve the disabled:
- Give incentive to Enterprises and Natural Entities that develop Physical Education programs for the disabled;
- Maintenance of system that will make effective the practice of physical education, sports and leisure activities for the disabled by
public and private schools, confederations, associations and clubs.
- Participation of the disabled in official and private sports events;
- Guaranteed inclusion of the teacher who graduated in Physical Education in the interdisciplinary team that serves the disabled
(Administrative Rule No. 69/89/MEC/CENESP);
- Inclusion in Physical Education undergraduate courses a subject or educational content regarding the disabled;
- Implementation of graduation and updating courses to the professional working in the sector;
- Improvement of work conditions of the professionals who work in the field of Physical Education, Sports and Leisure programs for
the disabled;
- Adjustment and increase of the number of public and private sports institutions and routes of access to facilitate the practice of
physical activities for the disabled;
- Accreditation of Physical Education professionals at the Social Security Ministry in order to integrate them into the rehabilitation
teams;
- Creation and/or improvement of physical spaces adequate to the practice of Physical Education at Hospitals and Rehabilitation
Centers;
- Incentive to the production of adequate equipment and sports materials to the disabled;
- Elimination of architectural barriers when designing and building public and private sports facilities, binding to the technical
standards regarding the functionalities of the equipment and materials;
- Foster publication, translation, documentation and disclosure of bibliography and research in the field of Physical Education, Sports
and Leisure;
- Foster research in the field of Physical Education, Sports and Leisure to the disabled by the sponsoring agencies and teaching
institutions.
Batatais/SP – December 1986.
Image. Continuation...
List of Participants.
Alberto Martins da Costa- Univ. Fed. De Uberlândia; Aldo Carlitos Potrich – Associação Riograndense de Paralíticos e Amputados –
ARPA, Inst. Educacional Nazareth – APAE – Porto Alegre; Almir Liberato da Silva – Univ. Fed. Do Amazonas; Antônio João
Menescal Conde – Inst. Benjamim Constant; Bárbara Ann Baptista – Secretaria Municipal de Esportes de Belo Horizonte; Carmem
Luiza C. Belga- APAE – Batatais; Célia Cristina C. Villena – APAE – Batatais; Eduardo Carneiro Schutz – Fundação Catarinense de
Educação Especial; Eduardo Ravagni – Univ. Fed. De São Carlos –Laboratório de Psicomotricidade; Edson Lúcio Kozan – Sec. De
Educação de Rondônia; Eron Beresford – SEED/MEC; Ervino Nesello – Univ. Est. De Londrina; Eustáquia Salvadora de Souza –
Federação Brasileira das APEFs; Francisco Camargo Netto – Univ, Fed. Do Rio Grande do Sul; Franklin Ronaldo M. Tavares – Sec.
de Ed. do Pará – DEFID; Idalina A. Lucas Costa – SEED/MEC; Ivair de Lucca – Univ. Para desenvolvimento do Estado de Santa
Catarina (CEFID-UDESC); Kátia Euclydes Lima e Borges – Sec. De Esporte Lazer e Turismo de Minas Gerais; Maria Cesarina G.B.
Santos
–
Fac.
De
Ed.
Física
–
PUCC/Campinas/SP;
Image. Continuation...
Maria Cinto Campez – Fac. De Ed. Física de Batatais; Marina Beatriz Neves – Sec. De Ed. Especial /MEC; Martha Oliva Matte –
APAE – Guaiba/RS; Osmani César Campez – Fac. De Ed. Física de Batatais SP; Paulo Eduardo C. de Mello – APAE/ Pirassununga/
SP e Faculdade de Educação Física de Batatais – SP; Pe. Roque Vicente Beraldi – Fac. De Ed. Física de Batatais – SP; Pedro Americo
S.Sobrinho – Univ. Fed. De Minas Gerais; Renato Henrique Silveira – Fund. Catarinense de Ed. Especial; René de Deus Tranquilini –
Organização Santamarense de Ed. Cultura – OSEC/SP; Rivaldo Gonçalves Martins – Academia Classe A – DF; Sidney de Carvalho
Rosadas – Fac. Int. Castelo Branco FICAB/RJ, Univ. Gama Filho (Dep. De Educação Física); Salomão Abid Netto – DEMEC/SP;
Tânia Maria de A. Alagão – Fund. Rio Grandense de Atendimento ao Excepcional FAERS/RS; Tânia Regina P. Braga – Associação
Salgado de Oliveira de Ed. e Cultura/RJ; Valdir Fischer – DEMEC/ RS; Vanilton Senatore – SEED/MEC – Federação Nacional das
APAES; Verena Junghanei – Escola de Educação Física USP/SP.
The letter has been produced as final document of the Work Group created by SEED/MEC to discuss issues of Physical Education and
Sports to the disabled. The WG met between March and December 1986 under the coordination of Vanilton Senatore and concuded its
work at a meeting carried out at the Clarethian School of Physical Education in Batatais/SP.
Digital collection: Memorial da Inclusão
Donation: Vanilton Salvatore.
1986
- Seed/MEC develops a training program for Physical Education
professionals to serve the disabled financing 24 emergency short term
courses and 3 specialization latu sensu courses.
- The Coordination of School Sports from Seed/MEC promote at the
JEBs - Brazilian School Games, carried out in Vitória, ES, and exhibition
of Wheelchair sports, proposing studies to include disabled students at
the event.
- Meeting the request of Abradecar, INT - National Institute of
Technology of the Ministry of Science and Technology, Seed - Physical
Education and Sports Secretariat and Cedate - Center for the
Development and Technical Support for Education of The Ministry of
Education and Culture celebrate an Agreement of Technical Cooperation
with the support of IBM and Petrobras for the manufacture of a
wheelchair adapted for basketball and athletic activities. The project was
developed from July 1986 to June 1988 and was coordinated by Prof.
Heron Beresford under the supervision of Corde.
- Delegation headed by the National Federation of PAEs takes part for
the first time in the Summer Paralympics in South Bend, Indiana, USA.
1988
- After the negotiation conducted by Corde, Seed/MEC officially included
disabled students in the JEBs - Brazilian School Games in the event
carried in São Luiz. MA.
- In Paulínia, SP, ABCD carried out the First Word Soccer of 5 Games. At
home, the team showed its strength and won the world championship.
- Seoul 1988 Paralympics - The games took place again in the same city
of the Olympics. For the first time the venues of the Olympics and
Paralympics were the same. The opening ceremony was held at the
Olympic Arena on October 15, with an attendance of over 75,000
spectators. More than 3,000 athletes form 61 countries competed in 16
sports modalities.
Brazil achieved a record number of medals, 27 - being four gold, ten
silver and thirteen bronze medals. The highlight of the Brazilian team was
Luis Cláudio Pereira who won 3 gold medals in the following modalities:
disc, dart and weight throwing, besides establishing three records, two
world records in dart and weight throwing and a paralympic record in disc
throwing. Our country ranked 25th. United States, Germany and United
Kingdom were at the top the medals score.
1990
- President Fernando Collor de Melo, through Decree 99187 of 03.17/90
extinguished Seed/MEC and creates the Sports Secretariat of the
Presidency of the Republic - Sede/PR, containing with its framework the
Deped - Sports Department for the Disabled.
1991
– November: Brazil participates from the General Meeting that
approved the by-laws of the IPC – International Paralympic
Committee – Budapest, Hungary.
Folder of the National Institute of Technology
Image: black and white picture of a wheelchair adapted for athletics (racing). It depicts a man on the wheelchair on the racetrack.
Technical Data:
Project developed from April 1987 to June 1988; total weight: 8.3 kg; distance between axis: 55 cm, width of seat: 32 or
30cm (optional); maximum external width: 63 cm; maximum height: 67 cm.
- Structure: aluminum alloy 6061-T6. Diameter 5/8 inches, tratec; tubular tubeless tires with 14 inches and 27 inches diameter,
“Olympic”; aluminum rim and cassola spikes; seat, back rest and thigh support in nylon; Termicom terminals; 15 inches front steering
wheel in 5/8 inches tubular aluminum, lined with vulcanized rubber; painted by electrostatic deposition.
Project Description:
Development in the scope of a Technical Cooperation Agreement celebrated between the Physical Education and Sports Secretariat
(SEED/MEC), Center for the Development and Technical Support to Education (CEDATE) and this Institute, and the financial
support on IBM Brazil and Petrobrás, the project aimed to meet the requests of Abradecar (Brazilian Association of Wheelchair
Sports) whose athletes until then had wheelchairs manufactured without taking into account resources and with inadequate productive
processes under the viewpoint of ergonomics and specific conditions of users.
The requirements of the project have been defined from the survey of use features (type of competition and track field flooring,
developed speed, mechanical request applied to the chair and interrelation athlete/chair) besides interviews with users and
bibliography.
The chosen parameters were:
- Minimum weight of the set; maximum structural resistance; stability and quick response in curves; optimization of efforts spent by
the athlete; adjustability to the different type of disabilities (polio, trauma, amputations) in their different grades of physical
impairment; use of national materials and parts; compliance to international sports standards.
As the application if different materials and parts was something novel, the team found some difficulties to find these materials and
parts in the local market; in some cases, such as the 14 inches front wheels, the tire and rim have been specifically manufacture for the
prototypes and the first 20 wheelchairs.
The list of materials that could be used to build the structure included from metal alloys (steel carbon, stainless steel, chromemolybdenum steel, aluminum and titanium) to resins reinforced with fiberglass and/or carbon fiber. After evaluating multiple
technical, economical and marketing aspects- the aluminum alloy 6061-T6 was chosen. For the precise evaluation of the material
behavior and resistance, due to the mechanical stress and intended configuration, a structural calculation was carried out by a
specialized company. After the tests with the 1 st and 2nd prototypes, they arrived to the final configuration that allows the correct
position of the athlete with adjustable backrest, seat and thigh support. Balance and stability are given by regulating the center of
gravity and camber adjustment in the plates of rear axles. A stabilization bar allows the precise regulation of the front wheels, which is
of the utmost importance for speed and conduction in curves.
Legend: Folder produced by INT –National Institute of Technology/Ministery of Science and Technology.
Digital collection: Memorial da Inclusão.
Donation: Vanilton Senatore
Image. Document. Stationery of the Federal Public Service.
Contains stamp with the wording: “Received on 03/30 /88. CORDE / Sedap/ PB”.
OF. SEED / SUDES / CDE / Nº 42.005
Date: March 29, 1988.
From: Secretary of Physical Education and Sports from MECAo: Coordenadora para Integration of Persons with Disabilities –
CORDE Prof. Tereza Costa D’Amaral.
Re: Information
Re.: OF. Nº 053/88 – CORDE / SEPLAN / RP
In attention to what mentioned in the document hereinabove mentioned through which you propose the inclusion of athletics and
swimming competitions for the physically disabled (paraplegics) at the Brazilian School Games of the present year, we thank you the
opportunity and praise the important initiative that redeems the importance of the integration of the disabled in the school context.
Therefore, we place ourselves at your entire disposal to provide all needed information and the follow-up of the implementation of
such importance measure for Brazilian sports.
Best regards,
Alfredo Nunes. Secretary.
Wording: Digital collection: Memorial da Inclusão.
Donation: Vanilton Senatore.
Image. Document.
Contains stamp with the date “April 22, 88”
Of. / 88 – CORDE / SEDAP / PR
Brasília, 04/22 /88
From: Coordination for the Integration of Persons with Disabilities – CORDE
To: Secretary of Education and Sports – MEC
Following the joint actions CORDE/SEED regarding the participation of persons with disabilities in the XVII Brazilian School Games
we are forwarding attached the documents that mention the number of paraplegic students from 1 st and 2nd Degree Education, below
18 years of age belonging to institutions affiliated to the Brazilian Association of Wheelchair Sports – Abradecar.
Best regards.
Teresa Costa d’Amaral
CORDE Coordiantor
IALC/alcm
Legend: Digital collection: Memorial da Inclusão.
Donation: Vanilton Senatore.
1992
Barcelona was the largest Paralympics event to date because it enabled
about 3,000 athletes from 93 countries to enjoy competition possibilities
unthinkable until then. The entire city was adapted and the support to the
athletes was close to ideal. The Opening ceremony on September 3rd
gathered more than 65 thousand persons and several television
networks made live coverage, which enabled real time broadcast to
thousands of viewers around the world. The Brazilian athletics team had
stars like Suely Guimarães and Luis Cláudio Alves Pereira, who broke to
world records: she in disc throwing and he in weight throwing. The
revelation was young runner Adria Rocha dos Santos, visually disabled
who won her first god medal.
1993
The Brazilian team of intellectually disabled athletes took part for the first
time in the World Winter Games of Special Olympics in Salzburg, Austria.
1995
. February: Creation of the Brazilian Paralympic Committee in Niterói, RJ.
. Goiânia, GO, hosts the first edition of the Brazilian Paralympic Games
2002
May: CBDS hosts in Passo Fundo, RS, the 1st Brazilian Deaf Olympics
with the participation of nine states.
2008
- Beijing Paralympics - with the best participation ever, Brazil finished in
the 9th place of the general classification with 16 gold, 14 silver and 17
bronze medals. It has to be stated that result may and should be
understood as a consequence of a work that started in 1950 and made
stronger by the actions developed by the leaders of the movement from
1981 on, which had been named the International Year of Persons with
Disabilities.
References
Plano Nacional de Educação e Desportos 1976 – 1979 – Ministério da Educação e
Cultura, 1976
Diretrizes Gerais para Educação Física/Desportos 1980/85 – Ministério da
Educação e Cultura, 1981
BAGATINI, V. Educação Física para o Excepcional – Ministério da Educação e
Cultura, 1982
KREBS, R. A Educação Física que eles merecem – Ministério da Educação e
Cultura,1984
Programa Nacional de Educação e Saúde através do Exercício Físico e do
Esporte – Ministério da Educação e Cultura e Ministério da Saúde, 1986
STEIN, J. Integração do Deficiente na Sociedade – Revista Sprint, Ano V Vol IV
nº 6, 1986
SENATORE, V. Esporte para Deficiente – 2º Encontro Internacional Esporte e
Saúde – Ministério da Educação e Cultura, Ministério da Saúde e
Organização Pan-Americana de Saúde, 1986
BOWERS, L. e KLESIUS, Stephen I’m Special – Universidade do Sul da Flórida,
1987
PETTENGILL, Nilma G. Educação Física e a Pessoa Portadora de Deficiência:
Contribuição à Produção do Conhecimento – Universidade Federal de
Uberlândia, 1997
MENESCAL, A.J., SOUZA, P.A., SENATORE, V. Introdução ao Movimento
Paraolímpico – Comitê Paraolímpico Brasileiro, 2006
SENATORE, V. Documentos e arquivo pessoal – 1972/2010
CHAPTER
6
Inclusion Memorial: the roads of the
Disabled
Crismere Gadelha, Elza Ambrósio and Lia Crespo
For many years, before and after the International Year of persons with
Disabilities, many militants, their families and institutions have been keeping and
preserving pictures, letters, agendas, posters, invitations, meeting minutes and
other documents. The care given to such documents vary according to the
sentimental value related to the story of those who kept them to the more
technical attitude of filing and preserving documents of historical value.
In 2006, during the celebration of the 25 years of the AIPD, that took
place in São Paulo on December 3, (81) was opened the exhibition "25 Years of
AIPD" with documents and images loaned by the militants of the social
movement of the disabled. Since then, a project to enlarge this exhibition was
waiting for an opportunity to be carried out, and that opportunity materialized in
2009 by means of the Secretariat of the Rights of the Disabled of the government
of São Paulo - SEDPcD (82)
_________________________________
81. "25 years of AIPD: 1981-2006" organized by the Araci Nallin Independent Life Center - CVI-AN; Association of the
Metro Friends of the Disabled - AME; Association of Visually Disabled and Friends - Adeva; Center of Documentation and
Information of the Disabled - Cedipod; by the Division of Rehabilitation Medicine of the Clinics Hospital of the School of
Medicine of the University of São Paulo - DMR; Ministry of Justice; National Federation of Education and Integration of the
Deaf - Feneis and Sorri-Brasil
82. ( with the support of the first State Secretary of the Rights of the Disabled, Dr. Linamara Rizzo Battistella, the project is
contemplated as an action regarding the "promotion of studies, debates and researches on the life and the reality of the
disabled and family members" and to the "creation of awareness in the different sectors of the society about the problems,
needs, potentialities and rights of the disabled"(Decree No. 52.841 of March 27,2008 Items VIII and X from Clause 3). The
exhibition opened on December 03, 2009, the International Day of Persons with Disabilities, and is located on the ground
floor of the SEDPcD building.
On August 26, 2009 we launched the campaign, via e-mail, inviting the
population to lend documents and images for the exhibition.
Dear Militants of movements for the disabled, managers of entities that work in the field
of the disabled,
The State Secretariat of the Rights of the Disabled, with the technical cooperation and
historical knowledge of renowned militants of the movement of the disabled, has
created a committee for the creation of the "Memorial of Persons with Disabilities" this
committee is constituted by: Ana Maria Morales Crespo (Lia Crespo), Antônio Carlos
Munhoz (Tuca Munhoz), Romeu Kazumi Sassaki, Ida Céia Palermo, Vanilton
Senatore, Flávio Scavasin and Elza Ambrósio, wishes to invite you to take part in this
important action of the Government of the State of São Paulo, with the purpose of
redeeming the story of fights and conquests of the disabled in the quest for dignity and
equal rights.
This secretariat summons the whole community of persons with disabilities, family
members as well as those involved with the cause, so that we can tell this history in the
form of a Memorial. Everyone may contribute sending documents, pictures or objects
of relevant significance for this segment, including material related to AIPD International Year of Persons with Disabilities - 1981.
We shall prioritize those persons who fight or have fought bravely for the recognition of
equal rights for this segment of the population.
With the result of this information, the "Memorial of Persons with Disabilities" will be
inaugurated on December 3, 2009 at the headquarters of this secretariat in São Paulo,
with an exhibition of pictures and objects regarding the conquests achieved by this
movement in the last 30 years.
Besides those persons mentioned above, Arlete Salimene, Daniel
Monteiro, Geni Aparecida Fávero, Mina Regen, Naziberto Lopes also were
members of the committee that selected the documents to be exhibited and
developed the concept and definition of titles of each panel. The work has been
coordinated by Elza Ambrósio (83) who assumed the curatorship of the exhibition,
with the consultancy of Lia Crespo, journalist and historian and Crismere
Gadelha, anthropologist, both militants of the segment and the dynamic
participation of the State Secretary, Dr. Linamara Rizzo Battistella.
The initial project suggested the following title for the exhibition: "Memorial
of the Fight of Persons with Disabilities" that later changed to "Memorial of the
Persons with Disabilities" and "Memorial of Persons with Disabilities: the Roads of
Inclusion". But, as the committee believes that the conquests of the segment
reflect in the guarantee of the rights for all citizens, the title was changed to
"Inclusion Memorial: The Roads of Persons with Disabilities". The documents have
been digitalized and returned to the owners.
. 83. Widow of Rui Bianchi do Nascimento (1949-2001), who had osteogenesis imperfecta, known as the disease of glass
bones. In June 2001 he achieved the master's degree in Communication Sciences, with the thesis: “Partial view of disability in
the press: Veja Magazine (1981-1999)”, ECA-USP. In 1990, Rui created the Center for Documentation and Information for
the Disabled – Cedipod (www.cedipod.org.br/), a not for profit organization, created because there were no entities
specialized in the collection , organization and disclosure of information regarding the disabled, mainly in what concerned
legislation.
This is an exhibition with the history regarding the social movement of the
disabled, with emphasis to the facts that changed Brazil (and the world) at the
end of the 1970's and during the 1980's. (84)
The word "memorial" comes directly from the concept of memory.
Memory is what is in the history persons have experienced, memories, important
facts of their personal and collective lives full of impressions, emotions,
perceptions and also dates and political facts, based or not on documents and
images.
The exhibition is based on the following understanding of history and
memory:
There is no pure history or memory. They are results of choices and voluntary or
involuntary selections of the historian, society and individuals.
The official or personal document/monument (a manuscript, picture or object among
others), the witness, hearsay, memories regarding experiences or vague memories,
everything is material related to history.
Memory and history are dynamic, are not restricted to specific sets of dates,
personalities and documents. A documents brings other, a memory enchains another
one, the voluntary memory stimulates involuntary memory. The Memorial da Inclusão
(Inclusion Memorial) intends to respect this natural dynamism and thus, the present
exhibition is the start, a start….
Such definition suggests that Memorial da Inclusão Intends to be a
contribution to the redemption of history, under the prism of historical process, or
a version, among others, of this history. Under such viewpoint of historical
process, complemented by the notion of how and by whom history is experienced
and told, we defined the logo of the Memorial da Inclusão.
Image: Logo of Memorial da Inclusão, a colored butterfly coming out of a spiral: the head and approximately 70% of the
right wing is orange, the remainder of right wing is green and blue, the upper part of the left wing is pink and the lower part
as well as the spiral from which the butterfly emerges are blue. The antennae have the format of small spirals turned
outside in orange.
The transformation of chrysalis into butterfly represents the success of the rupture of its
own cocoon. It is known that this step is essential for the butterfly's survival; leaving the
cocoon demands much energy. Movements are slow but strong and purposeful.
The spiral and the antennae, symbol of the memorial means that this process is personal
and not transferrable - the butterfly has to do it by itself; it symbolizes the fight of the
disabled for their rights, represents their path: from exclusion and invisibility to full
citizenship. The colors and asymmetric drawing of the wings represent human diversity
and the variety of disabilities, its demands and potentialities.
For many cultures the circular and spiral forms represent the life cycle and give us the
idea that there is no beginning or end. Better than a destiny is to reflect, go beyond and
renew.
84. The committee of collaborators made their collections available and helped in the selection and definition
of the documents and images provided by the militants to make the exhibition possible, These documents
have been digitalized and returned to the owners.
Memorial da Inclusão is reflected in the meaning of diversity, of the circular and spiral
forms which symbolize the histories and memories that have crossed and those yet to
cross in order to build an inclusive society.
Memorial da Inclusão is divided into twelve panels, gathering more than
700 documents and images, among photos and videos that try to bring to the
visitor the claims of the social movement of the disabled since the years that
preceded AIPD.
As it would be impossible to write about all images and documents in this text, we
make brief comments about some of them. As homage to the 30th anniversary of
AIPD(85); more than reproducing images of the exhibition, we want to transmit to
the reader the concept that rules the assembly and choice of documents and
images.
The "AIPD - International Year of Persons with Disabilities (1981)" and
"Social Movement" panels combine International actions and the official Brazilian
actions regarding mobilization and activities of the civil society, persons with or
without disabilities that assumed the forefront positions conducting and
conquering direct and literarily the motto of AIPD "Full participation and equality"
The panels gather documents and photos of preparatory meetings for the
1st National Meeting of Entities of the Disabled, carried out in Brasília (January
1980) and São Paulo (August 1980): meeting of the Coalition Pro National
Federation of Entities of the Disabled (April and May 1980) In São Paulo and
photos of the 1st National meeting of Entities of the Disabled that took place in
Brasília.
The "Social Movement" panel pays homage to the thousands of
anonymous Brazilian citizens who fought against dictatorship, as well to those
who have engaged in social movement for the Brazilian re-democratization.
This homage is expressed by the enlargement of photos of popular
manifestations printed in watermark in the whole extension of the panel as a
background for the exhibition of documents and photos is the social movement
of persons with disabilities. Over this background we reproduced a set of
pictures and 150 names of the movement militants.
Maria de Lourdes Guarda and Cândido Pinto de Melo, among numerous
militants, are honored at the Memorial da Inclusão, for being acknowledged as
the great leaders of the movement.
Among the historical images of the social movement, there is the
reproduction of the amateur 8 mm movie (soundless) made by the friends and
militants Rui, Tadeu and Pava, recording the protest parade in front of the
Municipal Theater of São Paulo on April 7, 1981, gathering hundreds of persons
with and without disabilities. The protest march has been organized by Aide and
FCD as an action motivated by AIPD to give visibility to the disabled, disclose
their claims to the society and rulers.
In this panel, among significant documents of the mobilization of the
disabled, stands out the picture of the preparatory meeting for AIPD of February
26, 180 at Colégio Anchietanum in São Paulo. The photo is considered as being
symbolic because it reflects the climate of repression still prevalent at the time in
Brazil. The meeting was attended by Adolfo Perez Esquivel, and Argentinean
winner of the Peace Nobel Prize of 1980. Among the militants were the leader
Cândido Pinto de Mello who became paraplegic after a police attack against his
life in1969, when he was active at the Students Union of Pernambuco. In the
picture, Cândido is among participants, protected by the gurney of Maria de
Lourdes Guarda, for he was still being surveyed by the police. According to
activist Ana Rita de Paulo, who coordinated the trip of Esquivel, Nobel Prize
Winner, he has been warned by DOI-Codi (86) that he should not talk about
politics.
__________________
85. The Exhibition Memorial da Inclusão can also be seen at the virtual address: www.memorialdainclusao.gov.br
86. DOI-CODI stands for Destamento de Operações de Informações - Centro de Operações de Defesa Interna
(Information on Operations Umit - Center for Internal Defense Operations), na emtity subordinated to the Army,
intelligence and repression of the Brazilian government during the regime that was imposed after the military coup of
March 31st 1964, the so called "Leaden Years"
Image. Two page document with the list of entities
FCD – FRATERNIDADE CRISTÃ DE DOENTES E DEFICIENTES FÍSICOS – PE. Rep.: Messias T. de Souza; ADM –
ASSOCIAÇÃO DOS DEFICIENTES MOTORES – PE. Rep.: Ednaldo F. Batista; CRH – CENTRO DE RECUPERAÇÃO
HUMANA – PE. Rep.: Jeferson A. Tenório; UACR – UNIÃO AUXILIADORA DE CEGOS DE RECIFE – PE. Rep.: Gilberto M. de
Souza; ABADEF – ASSOCIAÇAO BAIANA DE DEFICIENTES FÍSICOS – BA. Rep.: Crésio A. D. Alves; FCD –
FRATERNIDADE CRISTÃ DE DOENTES E DEFICIENTES FÍSICOS – PB. Rep.: Antonio M. Limeira; GCPD – GRUPO
CAPIXABA DE PESSOAS COM DEFICIÊNCIA – ES. Rep.: Daniel F. Matos; FCD – FRATERNIDADE CRISTÃ DE DOENTES E
DEFICIENTES FÍSICOS – AL. Rep.: Laura G. Nogueira; ADM – SSOCIAÇÃO DOS DEFICIENTES MOTORES DO CEARÁ –
CE. Rep.: João A. Furtado; ADFMS – ASSOCIAÇÃO DOS DEFICIENTES FÍSICOS DO MATO GROSSO DO SUL – MS. Rep.:
Paulo M. Metello; ADFB – ASSOCIAÇÃO DOS DEFICIENTES FÍSICOS DE BRASÍLIA – DF. Rep.: Benício T. Cunha Mello;
ADEFA – ASSOCIAÇÃO DOS DEFICIENTES FÍSICOS DO AMAZONAS – AM. Rep.: Manoel Marçal de Araújo; UNIPABE –
UNIÃO DOS PARAPLÉGICOS DE BELO HORIZONTE – MG. Rep.: Gilberto T. Silva; AMP – ASSOCIAÇÃO MINEIRA DE
PARAPLÉGICOS – MG. Rep.: Jurandir S. e Silva; SDB – SOCIEDADE DOS DEFICIENTES DE BAURU – SP; Rep.: Shiro
Tokuno;. IPC – INSTITUTO PARANAENSE DOS CEGOS – PR. Rep.: Alneri Siqueira; ALFP – ASSOCIAÇÃO DOS
DEFICIENTES FÍSICOS DO PARANÁ – PR. Rep.: Roberto Madlener; FCD – FRATERNIDADE CRISTÃ DE DOENTES E
DEFICIENTES FÍSICOS – SC. Rep.: Arnoldo C. Rodrigues; ABRADEFS – ASSOCIAÇÃO BRASILEIRA DOS DEFICIENTES
FÍSICOS E SENSORIAIS – SC. Rep.: Aldo L. Sobrinho; ARPA – ASSOCIAÇÃO RIOGRANDENSE DE PARAPLÉGICOS E
AMPUTADOS. Rep.: Carlos B. Cardoso; ONRAE – ORGANIZAÇÃO NACIONAL DE REABILITAÇÃO E ASSISTÊNCIA AO
EXCEPCIONAL. Rep.: Manoclito Florentino; SELB – SOCIEDADE ESPORTIVA LOUIS. Rep.: Wenceslau A. Padilha; FCD –
FRATERNIDADE CRISTÃ DE DOENTES E DEFICIENTES FÍSICOS. Rep.: Altair G. Fernandes; ASMG – ASSOCIAÇÃO DOS
SURDOS DE MINAS GERAIS – MG. Rep.: Antonio C. Abreu; FBS – FEDERAÇÃO BRASILEIRA DOS SURDOS – MG. Rep.:
Padre Vicente Burnier; ACU – ASSOCIAÇÃO DOS CEGOS DE UBERLÂNDIA – MG. Rep.: Lázado O. Silva; APARU –
ASSOCIAÇÃO DOS PARAPLÉGICOS DE UBERLÂNDIA – MG. Rep.: Arnaldo S. Carvalho; ADEFERJ – ASSOCIAÇÃO DOS
DEFICIENTES FÍSICOS DO ESTADO DO RIO DE JANEIRO – RJ. Rep.: Flávio Wolff; SADEF – SOCIEDADE AMIGOS DOS
DEFICIENTES FÍSICOS – RJ. Rep.: Maruf Aride; CLAM/ABBR – CLUBE DOS AMIGOS DA ABBR – RJ. Rep.: Jefferson
Caputo; CPRJ – CLUBE DOS PARAPLÉGICOS DO RIO DE JANEIRO – RJ. Rep.: Roberto S. Ramos; FCD – FRATERNIDADE
CRISTÃ DE DOENTES E DEFICIENTES FÍSICOS – RJ. Rep.: Nice F. S. de Mello; SODEVIBRA – SOCIEDADE DOS
DEFICIENTES VISUAIS DO BRASIL – SP. Rep.: Benedito de Paula Silva; AID – ASSOCIAÇÃO DE INTEGRAÇÃO DOS
DEFICIENTES – SP. Resp.: Leila B. Jorge; NID – NÚCLEO DE INTEGRAÇÃO DE DEFICIENTES – SP. Rep.: Ana M. M. Crespo;
UNADEF – UNIÃO NACIONAL DE DEFICIENTES FÍSICOS – SP. Rep.: Nadir R. do Amaral; FCD – FRATERNIDADE CRISTÃ
DE DOENTES E DEFICIENTES FÍSICOS – SP. Rep.: Maria de Lourdes Guarda; AADF – ASSOCIAÇÃO DE ASSISTÊNCIA AO
DEFICIENTE FÍSICO – SP. Rep.: Fábio C. Oliveira; Brasília, 25 de outubro de 1980. [Assinaturas de] MESSIAS TAVARES DE
SOUZA (COORDENAÇÃO); JOSÉ GOMES BLANCO (COORDENAÇÃO);
CARLOS BURLE CARDOSO
(RECONHECIMENTO DE ENTIDADES)"
Inscription: Thirty nine accredited entities at the 1st National Meeting of the Disabled. It is written in the document:
"National Meeting of the Entities of the Disabled, Brasília, October 22 to 30, 1980. Proposals approved by the 39 entities
of the disabled at the 1st National Meeting of the Entities of the Disabled.
Digital collection: Memorial da Inclusão
Donation: Romeu Sassaki
Image: Black and White photo. Event table with 6 persons. Behind the table a banner with the wording: “1981 International Year of
Persons with Disabilities – Full Participation and equality and the UN symbol for the International Year. The attendants are mostly
persons in wheelchairs. Cândido is in front of the table, and behind him is Maria de Lourdes Guarda on the stretcher.
Inscription: Preparatory meeting for the AIPD held on February 26, 1980 at Colégio Anchietanum/SP. On the table, sitting from left to
right are: Luis Celso Marcondes de Mura, Ana Rita de Paula, Leila Bernaba Jorge, Adlfo Perez Esquivel and Lia Crespo.
Digital collection: Memorial da Inclusão
Donation: Lia Crespo
Luís Celso Marcondes de Moura, from the general coordination of the
Movement for the Rights of the Disabled (MDPD) in an article published on
March 1st 1981 under the title of "Disabled gather and define mobilization"
(reproduced here) about a MDPD meeting, mentioned the meeting with
Esquivel and what Esquivel had said:
We had a meeting on the last 26th with the Nobel Prize Winner Adolfo Perez
Esquivel. Emphasizing that what is important is the unity and not so much uniformity,
that world personality was impressed with the type of popular mobilization centered
in unity. For him, the important is to meet to reflect on issues common to all and no t
individual difficulties. In Esquivel's view point, methods are secondary - the common
core of the different personalities is what matters.
Image: Black and White Picture. Three men are standing. Two are looking at papers on top of a folder on the left arm of the men
standing at the center. Behind the group there are people and part of AIPD’s banner.
Inscription: Kico Crespo, Adolfo Perez Esquivel and Luis Celso Marcondes de Moura on February 26, 1980.
Digital collection: Memorial da Inclusão
Donation: Lia Crespo
Doubtlessly the unit, without disrespecting diversities, was the tonic of
the movement of the disabled, for it proposed to create a national federation to
defend rights and deal with needs inherent to all disabilities. This spirit is
represented at the Memorial da Inclusão by the bulletin of the Movement for
the Rights of the Disabled - MDD and the bulletin Persons with Disabilities Coalition pro creation of a National Federation numbers 1 and 2 of 1980. The
bulletins explain the purpose of the National Federation and disclose two
events that took place in Brasília from October 16 to 26, 1980: "6th National
Wheelchair Games" and "1st National Meeting of Persons with Disabilities"
About the National Coalition there is also the reproduction of Etapa
newspaper. The document mentions the end of the National Coalition that
gathered persons with all kinds of disabilities and the creation of National
Federations according to areas of disability: Onedef - National Organization of
Physically Disabled Entities; Morhan - National Movement for the reintegration
of those affliceted by Hansen's disease. Feneis - National Federation for the
Education and Integration of the Deaf; SBO - Brazilian Federation of Persons
with Ostomies; APCB - Brazilian Association of Persons with Brain Palsy. At
International level these organizations were affiliated to the World Union of the
Blind. Latin American Union of the Blind, World Federation of the Deaf and
Disabled Peoples International (DPI), a worldwide organization that
encompasses all areas of disabilities.
The panels of the Memorial da Inclusão show that persons with
disabilities have conducted and represented their claims before the society and
governments. They acted directly and explicitly, at all levels in the fight against
paternalism, welfarism and the most prevalent prejudices rooted in the
population. Among documents and photos there are videos with parts of
interviews with participants of the AIPD in documentaries and different media.
Such parts have been distributed along the exhibition Memorial da Inclusão
organized by themes that the movement was focusing at the time:
consciousness/awareness, concept/prejudice, personal value of the person, no
award or punishment, no super hero or miserable, culture, incomprehension,
architectural and attitudinal barriers and terminology.
The issue of changing paradigms is expressed in Memorial da Inclusão
also by the titles of the posters: "Social Movement", "From Isolation to
Autonomy", "From Welfarism to Social Participation", "Elimination of Stigmas,
Demolishing Prejudices", "Society and its Languages", "The Senses in
Communication" and "Rights".
The social invisibility of the person with disability, paternalism and
welfarism were based in cultural values projected over the disability and the
disabled, values that were biased and stigmatizing. The action of the
movement was focused into changing such social reality. "Nothing about us
without us" - one of the logos of the movement is represented at Memorial da
Inclusão through the evolution of isolation, institutionalization and welfarism to
autonomy by means of social participation.
In this sense during the 1980's the social movement of the disabled
understood that next to the architectural barriers that had to be taken down, so
that the disabled would be enabled to come and go by themselves in order to
participate form the society - a barrier that could not be seen and much more
difficult to overcome: the barrier of attitudes.
Image. Newspaper of the city of Baurú, March 1, 1981.
Persons with disabilities gather and define mobilization.
Black and white photo. Several persons gathered around a rectangular table with the inscription: “By unanimous consensus every
attendant considered the meeting productive enough”
Londrina e Jacarezinho (PR), Andradina, Pederneiras, Lins, Rio Claro e Bauru (SP) sent representatives for yesterday’s meeting at the
headquarters of the Society for the rehabilitation and Reintegration of the Disabled (SORRI), the first meeting of the Movement for
the Rights of the Disabled (MDPD) with the purpose of expanding the movement for the state as a whole.
From 10:00 a.m. to noon the attendants divided in eight groups of five or more people discussed the Program Letter of the MDPD.
After lunching at the meeting place, from 2:00 to 6:00 pm each one of the attending entities exposed its problems and solutions they
are meeting for the same. Finally it was decided that a meeting will be summoned every two months, probably in the city of Baurú.
Informal movement.
Speaking about MDPD, the executive director of Sorri, Thomas F. Frist said that it is “an informal movement with the main goal of
incentivizing the disabled to raise and propose solution for their issues”. Frist put JC in contact with the disabled psychologist Luís
Celso Marcondes de Moura, who works in São Paulo at the NID – Center for the Integration of the Disabled and is member of the
MDPD coordination.
We had a meeting on the last 26th with the Nobel Prize Winner, Adolfo Perez Esquivel. Stating that unity is more important than
uniformity, that world personality was impressed with the kind of popular mobilization at the center. For him the important thing is to
reflect about the problems common to all and not about the individual difficulties. In the viewpoint of Esquivel, the methods are
secondary, the common core of the different personalities is what matters” said Marcondes de Moura.
The psychologist also mentioned that “MDPD is a free movement that is not related to any political party or administrative schedules
inclusively bearing the burden of holding headquarters without these influences, although much help has been offered to them”. He
told us that as soon as MDPD became aware of the fact that in Araçoiaba da Serra the Post Service refused a candidate because he had
polio sequellae, they started to act.”
A document of solidarity was sent to the rejected candidate offering moral and legal support. An official letter was sent to the Board of
the Brazilian Post and Telegraph Company (EBCT) demanding explanations. Identical attitude has been taken before in the cases of a
geologist and an engineer refused by Petrobrás.
Awareness and Magnanimity
The person in charge of FCD – (Christian Fraternity of the Sick and Disabled) Olímpia Salete Rodrigues, stated that FCD is a
universal movement with 80 centers in Brazil; the Marília center was created three months ago.
“In a first line of action, we are having the first meetings with entrepreneurs to solve problems of persons with disabilities that have
been refused employment and/or are unemployed. The evasive answer when refusing persons with disabilities gave the impression of
inaptitude, for the employee isn’t sure why he’s been rejected, and believes it was due to the disability. This demands magnanimity of
part of the employer who has to assume before the law, that he barred the candidate because he was disabled (which doesn’t
necessarily mean inept)” said Olímpia Salete Rodrigues.
She mentioned that Brasília is working in the sense to create in Marília the function of radio broadcasting control that can be
efficiently manned by persons with disabilities. Besides, work of companies that the disabled could do at home thus avoiding
architectural barriers that presently exist.
We are also thinking how to reach disabled children through their parents, and we are acting in the sense of reviewing the design of
new buildings (inclusively residential ones) to meet the provisions of Amendment No. 12 to the Constitution from Congressman
Thales Ramalho. As in Baurú, through Sorri, persons with disabilities are already working as sound controller and informers in the
city of Marília, through FCD with practical results. Today, in that city and later all over Brazil, telephone operators who work at
information centers may provide any listed or unlisted phone number, being enough for the caller to identify him/herself as being
disabled. FCD achieved this feat at TELESP from Marília and is already working to have the service extended over the whole
Brazilian territory. (Nilson Avante)
Legend: Digital colelction Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: First and last page of Bulletin: “Disabled Person I – Coalition Pro Creation of a National Federation, Brasília, July 1980
Cover: “1st National Congress of the Disabled – 2nd fortnight of October 1980”
Help needed: Due to the difficulty of finding people who could be interested in participating from our National Entity, we request to
all those who have acquaintances with persons who have any type of disability to give them a copy of this material or send your
addresses to P. O. Box 11.180 Brasília, DF, CEP 70000 on behalf of the Association of the Physically Disabled of Brasília (ADBF).
Goals of the Federation: The Federation shall be an entity with the purpose of defending the rights and general interests of the
disabled. By rights it is understood those rights related to work, transportation, education and adequate treatment, access to streets to
which we all are entitled as human beings and citizens. This is the nature that the founding group of the Federation intends it to have.
With this, we will be occupying the place that befalls to us in society, i.e., aware that we are of our needs, we will have an entity that
will demand from the government, community and institutions that provide services to us means so that every disabled person may
have full participation in the community. Next meeting: The group that is giving its first steps to create the Federation will meet in São
Paulo on August 9 and 10. This will be the third meeting to be carried out and there will be discussed the topics related to the entity
and the International Year of Persons with Disabilities.
Who should participate: Which persons should join the Federation? In the first contacts of the group that already had two meetings in
Brasília to create the National Federation of the Entities of the Disabled, the idea was to have a coalition of physically disabled
persons. However, the analysis of the situation of life of other persons with disabilities showed a common denominator: we are kept
secluded from society because we have different characteristics from the majority of the population, The possibility of a productive
work and adequate transportation are denied to us, therefore it was decided that ALL entities that encompass ANY type of persons
with disabilities, and who due to such disabilities are kept at distance of the society may join the Federation. All interested parties
should get in touch with the local entities, mentioned in this bulletin, but in the event there is no entity in your region, write to
Association of the Physically Disabled of Brasília – ADFB, P. O. Box 11180 Brasília-DF, Zip Code 70000.
Last page. Contains list of names of entities:
Isaura Helena Pozzatti, Fraternidade Cristã de Doentes e Deficientes Físicos, São Paulo, Capital / Ednaldo F. Batista, Associação dos
deficientes Motores – ADM, Varzea,Recife / José Gomes Blanco, Sociedade dos Amigos dos Deficientes Físicos, Triagem, Rio de
Janeiro / Flávio Wolff, Associação dos deficientes Físicos do Estado do Rio de Janeiro, Rio de Janeiro / Paulo Roberto Guimarães
Moreira, Clube dos Amigos da Associação Brasileira Beneficente de Reabilitação, Rio de Janeiro / Manoel Marçal de Araújo, Clube
dos Amigos dos Deficientes e Incapacitados da região Amazônica – CADEIRA, Manaus, Amazonas / Crésio de Aragão Dantas Alves,
Associação Baiana de Deficientes Físicos, Canela, Salvador / Romeu Sassaki, Centro de Desenvolvimento de Recursos de Integração
Social, São Paulo, Capital / Leila Bernaba Jorge, Associação de Integração de Deficientes, Pompéia / Marta helena Karrich, Santa
Catarina / Manoelito Florentino, Organização Nacional de Reabilitação e Assistência ao Excepcional, Porto Alegre / Ana Berthier
Silveira, Cristo Rei, Curitiba / Carlos Burle Cardoso, Porto Alegre / Carlos Lesli Faleiros, Pinheiros, São Paulo / Heloisa Helena
Ferrari Chagas, São Paulo / Vinícius de Andrade, Vila Mariana, São Paulo / Eliane Gonçalves Araújo, Porto Alegre / Ivone Soares,
Associação Campograndense Beneficente de Reabilitação, Campo Grande, MS.
Media: Boletim Informativo da Coalizão Pró-Federação Nacional de Entidades de Pessoas Deficientes. Central Committee: Paulo
Roberto Moreira, Benício da Cunha Mello, Crésio Dantas Alves, Romeu Sassaki.
Editor: Association of the Physically Disabled of Brasília
Headline: 1st National Congress of Persons with Disabilities, 2nd Half of October 1980.
Bulletin 1 – Coalition for the Establishment of the National Federation, Brasília, July 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image: First and last page of the Bulletin “Disabled person 2 – Coalition Pro Creation of a National Federation, Brasília, September
1980”
Cover: “1st National Congress of the Disabled”, 2nd fortnight of 1980”. Contains the UN logo for 1981, the International Year of
Persons with Disabilities
Help needed: Due to the difficulty of finding all persons who could be interested in participating of our National Entity, we request to
all those who are acquainted with persons with disabilities or have some disability to give them a copy of this bulletin, or send their
addresses to P.O.Box 11.180 Brasília, DF, CEP 70,000 on behalf of the Association of the Disabled of Brasília (ADFB).
Goals of the Federation: The Federation will have as main goals defend the rights and general interests of the disabled. By rights it is
to be understood those related to work, transportation, education and adequate treatment, access to streets to which we all are entitled
as human beings and citizens. This is the character that the founding group of the Federation intends it to have, in order to occupy the
place we deserve in society; conscious that we are of our needs, we will have an entity that will demand from the government,
community and institutions that provide services to us what we consider as being convenient and right, so that every disabled may
have full community participation.
Who should participate: Who are the people who should join the National Entity? In the first contacts of the group which already held
two meetings in Brasilia to create the National Federation of the Entities of the Disabled, the idea was to have a coalition of those who
have locomotion disabilities; however the analysis of the life situation of persons with different types of disabilities have shown that
there is a common feature among us: we are pushed aside from society for having a different features from the rest of the population.
It is denied to us the possibility of productive work, adequate means of transportation and often times we have difficulties of even
obtaining the treatment we need. Therefore, it has been decided that ALL entities that congregate ANY type of persons with disability,
and who due to this disability are marginalized by the society will be able to join the Federation.
Last Page.
Reminders of the lodging committee: sheets and towels: all necessary personal items should be brought by the events participants;
therefore we remind you to bring sheets and towels; climate: October already has a few rainy days and in the evening the temperature
drops to around 12º C; the payment of enrollment rate is of Cr$ 50.00 (fifty cruzeiros) for each participant and may be paid on the day
of arrival in Brasília; accompanying persons: in the lodgings there will be persons to help the participants in what presents difficulties
for them, therefore lodging to accompanying persons will only be given in exceptional cases; food and transportation: at your arrival
in Brasília read the information newsletter about the work, transportation timetables and the services that will be available to you
during the Meeting and where they can be found. The newsletters will be available at the reception stands; enrollments: those
interested in taking part in the meeting are to fill enrollment cards and send them as quick as possible to the office of the Lodging
Committee at Edifício Venâncio III, room 208, 2nd floor. Phone 225 2807, P. O. Box 111.180.
Brasília will really host persons with disabilities: Taking into account that one of the intentions of the group who are creating the
National Entity, is of clarifying the community about the life of the disabled, the Hosting Committee decided to invite the community
of Brasília to host those persons who will take part of the two events in October, and the people of Brasília accepted the invitation,
opening their homes to receive the disabled and definitively has established a commitment with the fight for the full social insertion
of many people kept at the margin of the society. This will bring about immediate results to our companions of Brasília, and at mid
and long term the effects of these events will be felt around the country. This because among the hosting homes are people who will
return to their original cities where will be able to contribute with the support of regional movements to socially reintegrate the
disabled in to the society. To achieve this purpose, it is important that each participant of the Games and National Meeting clarifies to
the hosting families about the life conditions of the disabled in order to get them interested in this plight.
Games and Meeting in Brasília. Two very important games will take place in Brasília between October 16 and 26 they are respectively
the VI National Wheelchair Games and the 1st National Meeting of the Entities of the Disabled. The VI Games will take place from
October 18 to 21m and will have athletics competition (100, 200, 400 and 800 meter races, weight, darts and disc throwing and
slylon), swimming, table tennis, basketball, shooting, checkers, draughts and boccia. The participants should arrive in Brasília on
October 16th and 17th in order to be submitted to classification medical examinations and registration. Individual and teams enrollment
may be done at the Brasilia Disabled Association (P. O. Box 111.180 – Zip Code 70300 – Brasília, DF. The national Meeting will start
on October 22 till 25, with the participation of the delegations already present in Brasília for the sports competitions, as well as other
people who will arrive specifically for the work group meetings.
Headline: 1st National Congress of the Disabled, 2nd fortnight of October, 1980.
Newsletter 2 – Colition Pro-Establishment of the National Federation, Brasília, September 1980.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Image. Newspapeer Jornal da Tarde, July 22, 1980.
Headline: The claim of these persons: Equality
Contains the main theme highlighted: (“The II Brazilian Congress of Social Reintegration was opened yesterday and will discuss the
work reality of the disabled. One of their goals is to end discrimination”).
João Carlos picks the small poster with the inscription in large red letters: “deficient” and shows it to everyone lifting his arms, next
with a fold, some pressure of his thumb and a cut, letter “d” is suppressed and João happily shows the poster again, thus summarizing
the message that tool other people who like him live on a wheelchair or supported by crutches: “physically efficient”) (Translator’s
note: in Portuguese disabled is “deficiente” and efficient is “eficiente”)
João Carlos Pesci speaking about his book “My profession is walking” was one of the lecturers who took part of the first day of work
at the II Brazilian Congress on Social Reintegration at the São Paulo Pontifical Catholic University. The main theme of the congress is
“the reality of the work of the disabled” should have been opened by Congressman Thales Ramalho who was unable to attend due to
health problems.
Thales Ramalho would speak about his Constitutional Amendment No. 12, approved in 1978 that deals with the end of social
discrimination and access to work by the physically disabled, as well as easiness of locomotion, transportation and possibility of
access to public spaces. The Congressman spent several years of a wheelchair as a result of a stroke in 1972.
In Brazil there are 12 million disabled, a tenth of the Brazilian population, according to Romeu Kazumi Sassaki from the Center for
the Development of Resources for Social Integration and one of the coordinators of the Congress. Unfortunately we see few disabled
on the streets because most of them are confined to their homes and institutions as consequence of the physical, architectural and
social behavior barriers they have to face.
In August of last year, the first congress had as theme the disabled child and obtained some immediate results as the creation of some
entities and the fact that 50 conclusions were taken and sent to the authorities about training of rehabilitation technicians, exchange
among specialized entities around the country with the idea of gathering them in a national entity, a fact that shall take place this year.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki.
Romeu explains that this year the Congress intends to examine the labor market for the disabled under all angles, from physical and
entrepreneurial barriers to the behavior of working peers. It is also intended to create a large national awareness campaign to achieve
market opening, demonstrating the validity of the work of the disabled. However, Romeu makes a distinction:
We do not want to force the entrepreneur to open the doors, but inform and educate him so he will offer work not out of
compassion, but because he understands that the disabled may be as good or better than any other employee. Then
discrimination will be over:
To end discrimination is a dream of all those who fight for the cause of the disabled, and according to Romeu, this will only take place
“educating people since childhood so that these children will grow up with the mentality that the disabled have to be integrated, and
that the disabled are part of the natural environment of human beings. This would represent ending with deep rooted prejudices that
the “never enlightened” society inherited along the years:
In the past persons with disabilities were seen as creatures sent by the devil, and therefore killed at birth or abandoned far away from
cities; other societies saw disability as a gift from God and acted paternalistically. Today one kills the disabled in a different manner,
leaving the disabled at the margin of the society and denying them work conditions.
João Carlos didn’t feel “dead” after a car accident in 1968 that paralyzed him from chest down at 26 years of age. In his book he
remember with detail the phone call to the fiancée in Rio, the trip on a rainy afternoon the next day, the skidding and the dislodgement
of the 6th spinal vertebra, hopelessly affecting his medulla, but not his spirit; he began to feel “more of a human being than before the
accident”. Not even the impossibility of acting in his profession, economy, frightened him. Painting appeared in his life almost by
chance. The doctor recommended drawing to exercise the weakened nerves and muscles of his right hand and soon the pencil was
substituted by the brush, “by the privilege of transforming a white canvas in a world of communication”. In 1970 João was starting an
activity he had never tried before and four years later increase his experience meeting other artists at the Republic Square in São Paulo
where he would show his works of art. Today his work can be found in art galleries, and he became a renowned artist. He loves
painting and sees in painting a reason to live.
The more I worked the less I felt that I was a paraplegic; with the same pleasure that I sued to kick a ball, now I work with the brush. I
feel a professional fulfillment painting as a paraplegic as if I were an economist. This paraplegia is relative, to write or paint, I am not
paraplegic; and this he proved tearing the letter from his poster , turning a physically deficient person into a physically efficient person
may be as simple as tearing a piece of paper using both hand an head”. Yesterday afternoon the busy scenario of Sé square was
occupied by a claim: the disabled carried out a public act to claim their rights as said the banners and posters: “we want work”, “work
yes, alms no!”, claims that do not differ from other sectors of the society.
Only the police seemed to acknowledge this reality: as if it were any students manifestation, DOPS recorded its presence with a van
parked on the side of the square, at the same time that the speeches were interrupted by sirens of Traffic Department and Police cars
reached the steps of the cathedral forcing their way between the few attendees.
Digital collection: Memorial da Inclusão.
Donation: Romeu Sassaki
Memorial da Inclusão represents such barriers (and the overcoming of
such barriers) by means of posters, covers of magazines and publications of
entities of the disabled, as well as documents, news issues and caricatures. The
exhibition exemplifies the positive and negative social perceptions of disability
and of the person with disability as it is shown in the printed media, book and
folders and in images, pictures, drawings and caricatures). Among the many
actions of the militants, some ended up becoming symbolical. Among them one
related to prejudice that marked the 2nd Brazilian Congress on Social
Reintegration that took place in São Paulo on July 22, 1980). An activist takes a
poster with the expression "physically deficient" with letter "d" torn out and
complemented by the imperative phrase: tear down your prejudices"
Image. Black and white poster. It is the above mentioned poster that has the letter “d” torn away... Digital Collection: Memorial da
Inclusão.
Donation: Cedipod.
In 1980, the Movement of the Disabled (MDPD) launched a document
called "Suggestions to the press regarding the International Year of Persons with
Disabilities indicating how to treat (images, terminology and approach) to be used
when writing about the issue and about persons with disabilities; and mainly
clarifying that the disabled should be heard and not represented by third parties
in their claims. Memorial da Inclusão shows this document. Manuals have been
published with the purpose of cooperating to achieve adequate treatment of
issues regarding this area, as well as events have been promoted (and still are)
involving communication, journalism and advertising as to the social
responsibility face to the disabled.
The treatment of the media as to subjects related to persons with
disabilities was observed by the UN and claimed by all countries that were
preparing and programming effective actions for the AIPD. From then on a
significant change is noted In the way of treating the subject. Magazines,
newspapers, books and other printed media, not only media from persons with
disabilities, started to represent the disabled in a natural manner.
Among the reproductions of issues covering the AIPD, the Memorial
reproduces excerpts of Folhetim No.210, a supplement of newspaper Folha de
São Paulo, completely dedicated to AIPD with the cover headlines "Perons with
disabilities are not useless or pitiful". The newspaper gave space to entities for
the disabled as well as those of the disabled, exploring the perception of both
types of entities about the themes to be dealt at the AIPD: integration, work,
education, awareness, prejudice, rehabilitation and rights.
Poster about architectural barriers, campaign of the 1980’s ; picture in the form of a negative of photo in light and dark blue hues. A
person is seen sitting in a wheelchair in front of stairs that occupy the whole width of the poster and two thirds of its length. The
person is sitting with the back to the observer with the feet on the first step of the stairs.
In the bottom of the poster is written: “Barriers are numerous, help us to decrease their number”. It contains the UN logo relative to
the International Year of Persons with Disabilities and logo of SORRI – Society for the Rehabilitation and Reintegration of the
Disabled. “Get in touch with CEDRIS – Center of Development of Resources for Social Integration”.
Digital Collection: Memorial da Inclusão
Donation: Romeu Sassaki
Image: Poster on attitude barriers, campaign of the 1980’s
Description: Black and white picture occupies the left side of the poster. A young man in a wheelchair, right arm extended with a
finger pointing to the observer. Title of the poster: “You are our biggest problem”
Text: “We are not asking anyone to change places with us- this is impossible, but think about the amount of prejudices that we have to
face every day. Add them up. Employers refuse us even if we have the same work capacity as other candidates. We suffer many
discomforts on the streets and public places. In the looks of people we see guilt, sorrow and even they feel not at ease in our presence.
We have to face all of it every day.
It is true that physical disability is more of a personal limitation in a world of people full of limitations. Most people forget that we, as
anyone else wake up, work, eat, rest and have families, think and feel. We are sure that ways are being sought to create more
conditions to solve our material problems. But it has to be remembered that comprehension comes in the first place. Only
comprehension can eradicate prejudices and indifference. This is the most important point. Perhaps after reading this ad, you will stop
and find a minute to think about it.
In the bottom of the poster: This ad is a cooperation between CESP – São Paulo Electric Power Company and the Government of the
State of São Paulo for the International Year of Persons with Disabilities
ABRADEF Journal. São Paulo, 1981. Special edition for the International Year of Persons with Disabilities– 1981.
Digital Collection: Memorial da Inclusão.
Donation: Cedipod
Image: Two page document. Contains stamp with AIPD logo.
Movement for the rights of the disabled
Suggestions to the press as to the International Year of the Disabled. The goal of the UN when it created the INTERNATIONAL
YEAR OF PERSONS WITH DISABILITIES was to seek “Full Participation and Equality” of rights for the disabled. In this sense the
Movement for the Rights of the Disabled (MDPD) considers some criteria to be important:
1. The image of the disabled. For more severe that the disabilities might be or deepest the willingness to overcome the difficulties, the
disabled should not be presented to the public as heroes and victims nor as exaggerations or exclusions. It is important that they should
be treated as normal human beings within their disabilities, always stressing their similarities and not the differences with the not
disabled. The emphasis should be centered on their skills and not their disabilities over normality and not abnormalities and mainly on
integration and not segregation.
2. Fund Raising. The message is look for “full participation and equality” of rights of the disabled is much deeper than financial help
to persons and entities. Besides the fact that all fund rising activities is difficult to control, account for and distribute, and if such fund
raising has supporting nature, it leads to the loss of the liability of the State on the health and wellbeing of its citizens, inducing the
false idea that problems may be solved with mere financial help.
MPDP does not deny the importance of the financial help to the disabled, to their associations and to the entities that provide services
to the disabled within clearly established goals. However this help should be given in a manner conscious of its limitations, enabling
the entities and associations to disclose their needs. (continues).
Image. Continuation...
3. Prevention campaign: The International Year of Persons with Disabilities has as core goal full participation and equal rights for the
disabled, being the preventive aspect one among many other recommendations of the UN. Considering that in prevention campaigns it
is difficult to separate the “bad” aspect of what we wish to prevent (here, the disability); it is noted that prevention only should be
approached after establishing UNEQUIVOCALLY the need of full participation and equal rights of the disabled.
4. The importance to hear the disabled. For the MDPD, it is important that the disabled speak about their problems, wishes and claims,
and that the reality of their situation is shown in vivid colors as well as their claims. In this sense, MPDP always will be at the disposal
of the press in order to cooperate in everything that has to do with the fight of the disabled for full participation and equal rights.
5. The responsibility of the disclosure of the problems of the disabled. The opening and the space created in the press by the
International Year of Persons with Disabilities should be used with responsibility and good judgment by the disabled in the sense of
de-mystifying a series of false concepts that exist about their image. Whenever possible the disabled should analyze the issues
regarding them before they are printed or broadcasted. It is of great importance for often times we unwillingly divide an idea or
change a thought in the “editing” process”.
São Paulo, November 22, 1980. MDPD Coordination
Digital Collection: Memorial da Inclusão
Donation: Cedipod
.
Image:. Document of the Latin American Regional Council.
ORGANIZACIÓN MUNDIAL DE PERSONAS IMPEDIDAS
CONSEJO REGIONAL LATINOAMERICANO
SERVICIO DE PRENSA Y COMUNICACIONES
MANUAL DE ESTILO
1. Todo lo que se publique debe ser redactado en forma interesante, oportuna y tan exacta como sea posible.
2. El material será de buen gusto. La redacción debe ser clara, fluída y fácilmente comprensible.
3. Deben emplearse frases relativamente breves y sencillas, dividiendo la Nota en párrafos frecuentes. No escatimar el uso del punto y
el punto y aparte. En periodismo noes usual el punto y coma, aunque es legitimo utilizarlo ocasionalmente.
4. Las frases no deben contener más de 15 a 18 palabras. Los párrafos pueden contener cuando mucho cuatro o cinco frases.
5. Es necesario conservar la unidad y la coherencia del relato. Siempre que sea posible cada idea debe expresarse con una frase.
Dentro de estas, hay que seguir el orden elemental gramatical: sujeto, verbo y complemento.
6. En cuanto a los números podrán escribirse con letras hasta el quince, y con números a partir del 16.
7. Deben empiearse palabras breves y conocidas, en lugar de largas y poco comunes. Cuando se recurra a una de éstas, será necesario
explicar ai lector su significado.
8. Procurar, salvo que no haya otra posibilidad, utilizar el equivalente en espanol de las palabras en otros idiomas. Si hubiera que
utilizar una palabra que no sea espanola, entrecomillarla en todos los casos. No se aconseja utilizar este tipo de palabras en los títulos.
9. Los textos se escribirán a máquina a doble espacio, en hojas formato carta. Las líneas de escritura tendrán un ancho de 70 espacios.
Cada 25 o 30 líneas se ubicará un subtítulo de no más de cuatro palabras. Habrá una sangría a cada lado del texto, con un ancho no
menor a los dos centímetros”.
Legenda: Referência bibliográfica: Organizacion Mundial de Personas Impedidas. Consejo Regional Latinoamericano. Servicio de
Prensa y Comunicaciones. Manual de Estilo. s/d.
Digital Collection: Memorial da Inclusão. Doação Cedipod
Translator’s note: In Spanish in the original
Cover of LA VOZ Newspaper (Uruguay), September 1988
LA VOZ de las personas com discapacidad de América Latina – Año II – Nº 6
Seminario sobre medios de comunicación y discapacidad em Buenos Aires – pág.3
Encuentro de Latinoamericanos em Brasil – pág. 12
Contém foto em preto e branco de pessoas com deficiência, reunidas num salão; com legenda: “En la primer semana de mayo de este
ano, Rio de Janeiro fue la sede del 4º Seminario Latinoamericano de Capacitación de Líderes de Organizaciones de Personas com
Discapacidad, de acuerdo com lo resuelto em marzo de 1987 em la 2da Asamblea Regional de la Organización Mundial de Personas
impedidas reunida em Montevidéo, Uruguay. Pese a enfrentar toda clase de inconvenientes, tales como la falta de recursos,
informaciones contradictorias y problemas organizativos, la ONEDEF do Brasil pudo sacar adelante este encuentro. Más de 200
personas que representaban a nueve países latinoamericanos y a todos los tipos de discapacidades, analizaron em profundidad diversos
temas, em un clima de confraternidad y entusiasmo. (em la foto una vista parcial de los participantes em momentos de un acalorado
debate).”
Em outras páginas: Los profesionales y técnicos – editorial – 3; Las personas com discapacidad em extrema pobreza – por Alejandro
Rojo Vivot – 8; La mujer com discapacidad (documento de ARIFA) – 6; Participación plena e igualdad de oportunidades - por Carlos
Botero Toro – 9.
Em Uruguay las pernosas com Discapacidad reclaman ¡Ley de rehabilitación ahora! – pág. 10.
Digital collection: Memorial da Inclusão.
Donation: Cedipod.
Transator’s Note: In Spanish in the original
Image: Cover of the Style Manual in blue and white lettering.
Bibliographic References: SOCIAL ACTION MINISTRY. National Coordination for the Integration of the Physically Disabled –
CORDE, Media and Disability Style Manual, Brasília 1992
Digital collection: Memorial da Inclusão.
Donation: Cedipod
Image: Cover of COMPANHEIROS (Companions) Newsletter
Description: black and White picture of a smiling boy, approximately 12 years old with leg disabilities, seated on a wooden chair, the
ortheses lying against the chair. The boy has raised arms doing physical exercises. In the background there are two other children
standing, one child with leg prosthesis is performing the same exercise. Green vertical strip on the left of the page with the name of the
Newletter: Companheiros.
WORLD CHURCH COUNCIL FOR THE INTERNATIONAL YEAR OF PERSONS WITH DISABILITIES, Companheiros 1981,
page 3,18.
Digital collection: Memorial da Inclusão.
Donation: Cedipod
Image: Cover of Contact Magazine
Description: black and white cover of Contact Magazine
Black and White cover with the name of the magazine in read as a headline. Picture of a woman seated on a wheelchair with her body leaning
forward. She pulls the suspenders of a child approximately 2 years old that is moving away from the chair. Woman and child smile. On top of
the picture the text: “Full participation and equality”. On top of the phrase the symbol of the International Year of Persons with Disabilities.
Below the picture: “In this edition: ‘Dignity and value of human beings, by Haroldo H. Wilke – Program of the World Council of Churches for
AIPD, 1981 – International Year of Persons with Disabilities, 1981; “Treatment and Rehabilitation of Hansen’s disease Patients”.
CONTACT – Christian Medical Committee of the World Council of Churches – Geneva No. 19, August 1981.
Digital Collection: Memorial da Inclusão
Donation: Cedipod
Image: Cover of Newsletter “Community Based Rehabilitation News”
Blue cover with black and white photo of two people in wheelchairs. The younger person with a wide smile is preparing to throw a
dart.
COMMUNITY BASED REHABILITATION NEWS. International newsletter. AHRTAG – Appropriate Health Resources &
Technologies Action Group Ltd, n. 2, abr. 1989.
Digital Collection: Memorial da Inclusão.
Donation: Cedipod.
The expression "nor useless or poor soul" leads to another theme widely
debated in those years and that is still present nowadays in the society, i.e., that
social inclusion of persons with disabilities does not take place through the
fulfillment of the social expectation of "overcoming hurdles" of the person with
disability with regards to the level of disability. Inclusion is not the evolution of de
condition of "poor soul" to that of a "super hero". Social Inclusion is the leveling of
opportunities, which implies in the acknowledgement of differences and equality
of rights.
The performance of the social movement of the disabled in the
preparation, during and after the UN International Year of Persons with Disabilities
assumed a larger dimension at the time the new Constitution was enacted (19871988) when organizations of persons with disabilities, professionals and engaged
militants mobilized to debate, approve and take to congressman the legal precepts
they would like to have contemplated in the 1988 Constitution. The movement
gathered thousands of signatures needed to present a popular amendment
containing the claims presented on August 28, 1987. This mobilization allowed
many claims of the movement to be included in state and cities laws and in the
legislation in general. This has been changing, even If slowly, the landscape of
Brazilian cities.
Crowning these conquests has been enacted by means of Decree 6949
of August 25, 2009 the International Convention on the Rights of Persons with
Disabilities and its Optative Protocol signed in New York on March 30, 2007.
Approved by the Brazilian Congress on July 09, 2009 through Legislative Decree
No. 186, the Convention and Optional Protocol received the same validity of a
constitutional amendment. The Optional Protocol enables groups and individuals
to present legal petitions to the Committee for the Rights of the Disabled, in the
event they file suit at their own countries and exhaust all legal remedies to defend
their interests no achieving any results.
To have the above mentioned acts happen, several old and new
organizations of disabled in Brazil created web campaigns and, among other
actions, held repeated meetings with congressmen and senators in Brasilia.
Above all, this is a conquest of the new militants showing on one side that there
is still much to do, and on the other, that the movement continues to be much
alive and vibrant.
Image: Book cover. Title: “Conventions on the Rights of the Disabled”
Description: Rectangular Book. Green background framing the central drawing in gray: women at a wheelchair using a computer. The
chair is tucked under the table. The drawing is on the left side of the rectangle, on the right in water mark there is the expression:
human rights.
Inscription: SÃO PAULO (State). State Secretariat of the Rights of the Disabled: Convention on Human Rights for the Disabled São
Paulo: [s.n.], s.d.
Resumé of the Authors
Ana Maria (Lia) Morales Crespo
Holds an undergraduate degree and Master of Arts in Journalism, doctorate in
Social History by the University of São Paulo. Militant of the social movement of
the disabled since 1980; co-founder of NID Center for the Integration of the
Disabled and CIV-Araci Nallin - Center for Independent Life - Araci Nallin. Author
of the children's book "Julia e seus amigos" (Julia and her friends) (Nova
Alexandria, 1985) - that treats disability, prejudices, inclusive education and the
importance of friendship to build an inclusive society.
e-mail: [email protected]
Crismere Gadelha
Undergraduate in Social Sciences (USP) and graduated in Social Anthropology
(Unicamp).
Works with qualitative research for more than twenty years. Since 1990 is
dedicated to subjects such as memory and identity. Social manager by Senac
and member of the Documentation and Information Center of Persons with
Disability - Cedipod. Consultant at Memorial da Inclusão: The paths of the
disabled.
e-mail:[email protected]
Elza Ambrósio
Undergraduate in Letters, graduated in Business Administration, MBA in
Management of Companies, qualification Museology: Preservation and
Socialization. In the last 30 years has been dedicated to the social movement of
the disabled, participated from the creation of the Center for Documentation and
Information for the Disabled; technician in web accessibility and curator of
Memorial da Inclusão: The paths of the disabled.
e-mail: [email protected]
Romeu Kazumi Sassaki
Graduated in social work and expert in issues of persons with disabilities
(supported work, legislation, professional rehabilitation, inclusive education,
employability, media); social inclusion consultant with 51 years of professional
experience; activist for the rights of the disabled for 32 years; Author of books
and articles on social inclusion.
e-mail: [email protected]
Suzana Lopes Salgado Ribeiro
Holds a PhD in History by the University of São Paulo where she made her
undergraduate studies; for fifteen years has been doing researches in Oral
History with emphasis on themes such as: identity, memory, narrative and orality.
Gave classes as invited professor at Universidade Agostinho Neto in Angola and
invited researcher from the Oral History Office of the Columbia University in the
United States.
e-mails: [email protected] / [email protected]
Vanilton Senatore
Finished Physical Education at PUC Campinas in 1972, started teaching Physical
Education and Sports for the Disabled in 1974 in Brasília; Director of Physical
Education from the Education Secretariat DF from 1979 to 1985; Coordinator of
school sports/MEC 1985/1987; Deputy coordinator da CORDE 1987/1989;
Director of the Sports Department for the Disabled/ SEDES/Presidency of the
Republic 1990/1993; Volunteer Director at the Brazilian Special Olympics from
1990/2002 and coordinator of School Sports CPB 2005/2007, technical
consultant to SEDPD/SP since 2008.
E-mail: [email protected]
Prepared by:
Government of the State of São Paulo
Governor – Geraldo Alckmin
State Secretariat of the Rights of Persons with Disabilities
Secretary – Linamara Rizzo Battistella
Technical Team
Organizers:
Ana Maria Morales (Lia) Crespo
Crismere Gadelha
Elza Valdette Ambrósio
Collaborators:
Ana Beatriz Teixeira Iumatti
Ana Maria dos Santos
Márcio Bustamante da Costa
Publishing coordination
Ana Maria Morales (Lia) Crespo
Crismere Gadelha
Elza Valdette Ambrósio
Description of the accessible version
Crismere Gadelha
Graphic design and diagramming
Marli Santos de Jesus
Diagramming staff
Fábio Bernardo Silva
Tiago Miliozi Camilo
Revision
Heleusa Angelica Teixeira
Cover
Ricardo Ferraz, Jefferson Duarte
Cover Image
Cover based on the stamp that celebrates the 30th anniversary of AIPD, created
by cartoonist Ricardo Ferraz, who for more than 30 years dedicates his drawings
to disabled persons. Jefferson Duarte, scenographer of the exhibit Memorial da
Inclusão complements the image with the 1981 logo "full participation and
equality"
4th cover image
United Nations (UN) logotype for 1981 - International Year of persons with Disabilities
Publishing, CTP, Printing and Finishing
Official Printing House of the State of São Paulo
format : 21,6 x 27,9 cm
printing types: ITC Berkeley Oldstyle and Verdana
paper
cover | Duo Design 300 g/m2
type of paper: Mat Couché 120 g/m2
number of pages : 412
edition : 1000 units
Image: Black and White photograph of two small children between one and two years old
hugging and smiling. The smaller child is in a wheelchair adequate to her age and is
being hugged from her left side by another standing child with no disability.
Inscription: The voice of the disabled from Latin America. Uruguay, year 1, No. 4,
December of 1987 [LA VOZ de las personas com discapacidad de América Latina.
Uruguai, ano 1, n. 4, diciembre de 1987](advertisement).
Digital collection: Memorial da Inclusão; Donation: Cedipod
Image: Second cover: Background composed of three horizontal lines in colors Orange,
White and blue, In the second line, white, was placed the symbol of the International
Year of Persons with Disabilities from UN; below in the blue strip are places the
logotypes of the State Secretariat of the Rights of Persons with Disabilities and next to it
the logotype of Memorial da Inclusão (Inclusion Memorial)