When I was 19 years old, I acquired a physical disability due to a spinal cord injury, as a result of a car accident. At this time, I was starting my communication studies at university. As a patient in the rehabilitation center, I started advocating for better conditions. Then, I soon got involved in the disability movement, becoming part of a Disabled People’s Organization in Rio de Janeiro. Rapidly, I started to become one of the leaders of the disability movement in Brazil. I joined the coordination of the National Coalition of Persons with Disabilities and started to work regionally through the Latin-American Council of Persons with Disabilities. I have also been the editor of a newspaper supporting the disability rights movement for many years. At this time, the dictatorship was coming to an end in Brazil, and the county was becoming very politicized. This was an interesting time to learn, when you were politically engaged. And I was engaged on many different levels: student movements, political parties, disability rights movements. It was a rich moment. Many publications were issued. Every month, you would see a new organization popping up in a place that you would never have imagined. It was a real blooming of the disability movement. I had no background in any of these fields and just learnt a lot of things at that time.
In 1981, the United Nations’ International Year of Disabled Persons provided disability movement organizations with an opportunity to define the parameters for organizations OF and FOR people with disabilities. It was a huge milestone globally and locally. All the members started to do something at home. In Brazil, leaders began 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 made concerning representation as well. We went for parity between different types of impairments: hearing, visual, physical disability. Intellectual disability was not represented. As it often happens within social movements, some organizations found it hard to work together. Then in 1986-88, after the end of dictatorship in Brazil, an overall review of the Brazilian Constitution took place. The disability movement was very engaged in this process. It was a fantastic opportunity to mainstream disability within the whole text. At the time, the status quo was the medical model, but the leaders of the movement 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.
I moved to the United States in 1995, and started working a lot internationally, first at the Inter-American Development Bank, then at the World Bank in 2001, as a focal point for disability and development for Latin America and the Caribbean. I also was Chair of the Inter-American Institute on Disability and Inclusive Development (IIDI), which had been created at the end of the 90s. Therefore, I received the information from a member of the US Mission to the UN that there was reluctance amongst developed countries to the launching of a process to develop a Convention on the rights of persons with disabilities. When this member of the US Mission to the UN called, he said that they needed the disability movement’s voice to express its endorsement and advocate for the process. The Institute could count on strong networks and an extensive list of people, speaking many different languages. Together with Luis Fernando, we rapidly developed some notes for the disability movement and then sent these out to all the members of this list. This is a part of the story that is not visible. Afterwards, when the process was launched, the missions were called in 2003 to bring people with disabilities into the delegations. The World Bank and other organizations also sent people with disabilities. My role, as well as the role of others like Catalina Devandas, who also was working for the World Bank, was more that of an observer. We had specific seats, and always, in every session, contributed a statement. Although there were no official instructions, our supervisors supported our participation and our making statements. Diplomats would just clear the floor.
When people with disabilities started to take part in the process, amazing things started to happen gradually. Nothing was expected or planned. It just happened in a very natural way. If we were to tell the story to a typical UN official, we would realize how exceptional it was. We broke all the protocols, joining sessions that were closed. The Ad Hoc Committees began to be really informed by the disability movement. This was a very collaborative process. In the beginning, there was a risk that some countries would not accept the possibility of elaborating a Convention. But after that, the negotiation process was quite smooth – except for discussions relating to certain articles. It was interesting to see how different countries, and people speaking different languages could ultimately find agreement. It was quite a process. We never imagined that one day we would be involved in negotiating a Convention. Today, we realize how amazing all this was, but at the time we did not have the chance to be surprised. It was just a learning process, in which the delegates were also learning.
The Convention is a conquest for all of those who participated in the process, and for all the disability leaders that had been advocating for many years around the world. It can be considered as a recognition of their efforts, and as a confirmation that what they were saying was true. The Convention can serve as a frame of reference for communication and dialogue regarding the recognition of the rights of persons with disabilities. It is a milestone that recognizes the disability movement as a human rights movement within the development agenda. The reality is that the Convention changes the way institutions like UNICEF, and in particular the UN agencies, look at people with disabilities. All the Member States are implementing this Convention, are asking the UN and civil society for help at all different levels: policy, legislation, programs, services. This whole scenario started happening because of the Convention.
The Convention is not an end in itself. It is just a tool that allows us to continue pushing for the rights of people with disabilities. There is still a lot of work to be done to achieve the changes needed. Hence, the need for civil society acting together. However, the disability movement is still full of gaps and conflicts. We say that people with disabilities should be at the center of everything, from design to implementation, but there are still very few people with disabilities with the capacity to act at all levels of decision making. For example, at the local level, DPOs are still very fragile, with no infrastructure, and are often dominated by one individual. During the Convention’s negotiation process, it was apparent that the disability movement at a global scale (represented for example by the International Disability Alliance) and the reality at country level are two very different levels that can sometimes be disconnected. Of course, the outcomes of the New York and Geneva meetings can have strong impacts. Nevertheless, there is a clear need for civil society to impulse changes from the local level (I include NGOs, even if they can most likely be considered as service providers). This reality has been a constant throughout my 40 years in the disability movement. If we don’t invest in really building up the capacity of people with disabilities at a local level, this process will not go far enough.