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The emergence of a disability movement


In 1981, the United Nations’ International Year of Disabled Persons provided the disability movement organizations with an opportunity to define the parameters of organizations OF and FOR people with disabilities. This was a huge milestone globally and locally. All members began doing something at home. Leaders started to emerge and people were brought together. One of the central questions was: Who can speak on behalf of people with disabilities? This led to criteria being defined to specify what makes an organization part of the disability movement. Decisions were also made concerning representation. We went for parity between different types of impairments: hearing, visual, physical disability. Intellectual disability was not represented. As it very often happens within social movements, some organizations found it hard to work together.

Rosângela Berman Bieler

After the end of dictatorship in Brazil, an overall review of the Brazilian constitution was conducted in 1986-88. The disability movement was very engaged in this process, and it was a fantastic opportunity to mainstream disability throughout the entire constitution. At this time, the status quo was the medical model, but disability movement leaders were advancing a lot, going to universities and discussing concepts such as accessibility, equal opportunity, social inclusion and independent living. The government was strongly oriented towards the medical/charity model, but organizations were working within the social model framework. It took a lot of effort, but Brazil had very interesting strategic minds in the disability movement that could move things around in a very interesting way. This was already progressive, and the national structures and laws on disability were created at this time.

Rosângela Berman Bieler

Before the Convention, there was a law in Chile called the law for “Social Integration of Persons with Disabilities” dating back to 1994. However, many of its requirements weren’t even implemented, as there were no monitoring mechanisms. At this time, I was the president of an association, fighting for the rights of deaf people and their access to culture. There were no trained sign-language interpreters, there was no inclusion in the school system, and there was no access to citizenship. In this law, there was a provision stating that deaf people should have access to information, but this provision was not enforced. In 2001, we made filed a lawsuit against the National Television Council, to ensure access to information for deaf people. Our request was dismissed for official reasons, but this process helped draw the attention of the public to the problems relating to access to information and education. Following the intervention of the Inter-American Supreme Court and 6 months of negotiations, sign language interpreters were finally included in the news broadcasts.

Pamela Molina

Before the Convention, little attention was paid in Indonesia to the rights of diff-abled people, and these rights were not well respected. At the time, things were still operating under a charity approach. In 1995, I created an organization with my diff-abled friends to claim our rights, and we drafted a proposed law that we submitted to the government. This resulted in 1997 in the Law n°4 relating to persons with disabilities. We were quite disappointed when the law was eventually issued. The government had made many restrictions, and the approach was based more on charity than on rights. As a result, we couldn’t use this law to fight for our rights, even though the government was not doing much to fulfill these rights. Getting to school, getting a job, public facility accessibility were issues that were hardly addressed.

Setia Adi Purwanta (Indonesia)

In the late 90s, I initiated the creation of an organization called the “Without Barriers Foundation”. Afterwards, in 1999, along with a friend of mine called Federico Montero Mejia, who had come to work for the World Health Organization, we organized the Forum for the Rights of People with Disabilities in Costa Rica. This forum was promoting advancements very similar to those that the Convention later integrated. The logic was not to build a centralized structure by strengthening memberships. Rather we were trying to bring together people who, through action and reflection, could facilitate the transformation of disabled people’s organizations into autonomous organizations.

Luis Fernando Astorga

Before coming to HI’s Headquarters in the late 1990s-early 2000s, I had been working with Handicap International within different programs for 15 years (Pakistan, Mozambique, France and Tunisia) and had had the chance to begin working on disability policies and to develop projects with the disability movement in Mozambique. In 1997, most of HI Headquarters’ technical resources were focused upon physical rehabilitation. Nevertheless, at the program level, there was a growing interest in education, employment, health, sport and other “real” life topics. In addition, to build upon the dynamic implemented by the program, a new “Disability Rights and Policies” technical unit was created at HI headquarters in 2001. One of this unit’s objectives was to support the disability movement and the voice of persons with disabilities to advocate for inclusion in society. When I was responsible for this unit, we built it up, drawing upon references such as the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities, WHO’s International Classification of Functioning, Disability and Health (ICF) and the Disability Creation Process. It was important to define theoretical views to be able in order to provide a general framework for our actions, and it also was important to share these conceptual models with HI partners at the program and international levels. The creation of the existing partnerships with Disability People Organizations (DPO) at the HI program level and the creation of the “Disability Rights and Policies” technical unit were the 2 most important steps that prepared HI’s participation in the CRPD process.

Philippe Chervin

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