I acquired a physical disability in 1986, as the result of a serious car accident, following which my right anterior leg was amputated and my left limb ended up with a functional limitation. As a result of this accident, I have been using a wheelchair permanently since then. I have been the leader of social and political organizations, and for 10 years, at a time when Central America was going through a critical situation with the war, I worked for the CODEHUCA (Comisión para la Defensa de los Derechos Humanos en Centroamérica), a Central American organization specialized in human rights. At the end of the 90s, with a friend called Federico Montero Mejía, who was working for the World Health Organization, we promoted the Forum for the Rights of Persons with Disabilities, which was held in 1999 in Costa Rica. I had already been involved in activities for the rights of people with disabilities before, but it was really from the Forum onwards, that I started to fully focus on the issue. The principles of this Forum were an expression of tangible progress, very similar to what the convention later became. We were precursors, because at that time it was really rare to address the rights of people with disabilities in this way.
In 2001, I got in touch with Rosângela Berman Bieler. At that time, she was the President of the Inter-American Institute on Disability and Inclusive Development, which I joined to work with her. This same year, in September, Mexico launched a proposal to develop an international treaty on the rights of persons with disabilities at a World Conference against Racism, Racial Discrimination, Xenophobia and Related Intolerance, taking place in Durban, South Africa. The proposal was accepted, but Mexico subsequently faced a lot of resistance, mainly from developed countries, to the launching of the process. In response to this resistance, the Mexican team contacted the Institute on Disability and Inclusive Development, and Rosângela and I designed an international campaign for them, in order to promote the idea of an international Convention on the Rights of Persons with Disabilities. Thus, I began to participate in the genesis of the Convention right from the beginning, and then I took part in all of the Ad Hoc Committee’s sessions. Once the Convention was adopted, I worked to promote it and to raise awareness about it. As a result, I have developed a very intimate personal relationship with the Convention.
Once the resistance of developed countries was broken, a Resolution was passed by the General Assembly to launch the negotiation process. An Ad Hoc Committee was created, and given the responsibility during its First Session in August 2002 of determining whether it would be convenient or not to elaborate an international treaty on the rights of persons with disabilities. The negotiations eventually led to a positive answer. In June 2003, during the 2nd Session, it was decided that the text would take the form of a broad and comprehensive treaty, and instead of setting up a committee of international experts, it was decided to create a Working Group to write a first draft of the Convention. The text was elaborated in a two-week period in January 2004. It was of such high quality, that if you were to compare it to the final version of the Convention, you would find a lot of similarities. During the 3rd, 4th and 5th Sessions (between May 2004 and February 2005), additional comments were made in relation to each article of this draft. Then, Don Mackay, who in the meanwhile had become President of the Ad Hoc Committee, was assigned with the task of issuing a global synthesis that came to be called the “President’s draft”. The 6th and 7th Sessions (between August 2005 and January 2006) were meant to clean up this draft. Eventually, a final agreement on all articles was reached in August 2006, and the final approval was celebrated on the December 13th, 2006.
Besides being part of the Working Group that prepared the first draft of the Convention in 2004, as a representative of civil society organizations from the Americas, I took part in all of the Ad Hoc Committee’s sessions. During the First Session, the group of people representing Disabled People’s Organizations was still small and we didn’t know each other. It was during the2nd Session, that the idea of the International Disability Caucus began to emerge, to make the voice of people with disabilities heard. Nevertheless, I felt very concerned by the under-representation of organizations from developing countries. This led me to propose the idea of the South Project, which was elaborated in 2005, as a result of a partnership between Handicap International and the Inter-American Institute on Disability and Inclusive Development. Between January and August 2006, this process finally led to the participation in the negotiation process of over 60 Disabled People’s Organization’s leaders from many places: Asia-Pacific Region countries, African countries and Arab countries. The quality of these leader’s interventions brought new perspectives that really enriched the debates. After the Convention was approved, I took part in a large number of events in Latin-America, along with Stefan Tromel. These events were organized to disseminate, promote, and provide training relating to the Convention, for Spanish and Portuguese-speaking people. We were also trying to raise people’s awareness, to make sure that the treaty – once ratified – could be turned into truly inclusive public policies, which could improve the living conditions of people with disabilities in State Parties.
There is something fundamental and, at the same time, paradoxical about the Convention: never in the history of a treaty’s drafting process, had civil society played such an important and proactive role. Why is this paradoxical? Even though they formed a group of humanity that is so discriminated against, people with disabilities were so very willing to participate and to learn that they managed to play a proactive role in the overall process. They were active during the Ad Hoc Committee’s sessions, in the Working Group, in many other side events and meetings, as well as through Internet mailing lists. Many proposals emerged from these exchanges and contributed to the Convention’s elaboration. This really gave full meaning to the slogan: “Nothing About Us Without Us”.
In Latin America, for the majority of countries, the Convention does not yet seem to be considered as a benchmark. Some countries have made progress, but some reports that I am aware of tend to be limited to good intentions. Indeed, these reports focus more on specific activities than on the monitoring of indicators for such important sectors as education, health, rehabilitation and accessibility. The kinds of reports that are needed now relate to the ways in which living conditions and access to rights can be improved for people with disabilities. We are at a stage where the time elapsed is still short, but we should already be able to see some results. We need to be more demanding, as the achievements with regards to the Convention are still limited. One of the great challenges is to carry on working from the point of view of Disabled People’s Organizations (DPO), with a constant attention to social issues and a focus upon human rights, exerting pressure and continuing to be a source of proposals. I insist on the following: DPOs cannot limit their actions to complaints or wailings. We need to improve our capacity to make proposals and analyses. Many of us can become experts on how to come up with solutions for the effective inclusion of people with disabilities and make sustainable proposals – within both the development framework and available funding limits. It is in this way that we must take advantage of any space available.
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