Can you describe how was the situation of people with disabilities in Chile before the Convention ?
Before the Convention, I was living and working in Chile, where I was the president of an organization of deaf people called “Real Citizenship of Deaf People from Chile”. We were working voluntarily, struggling to make access to cultural rights a reality for people with hearing impairments. At this time, there was no inclusion of professional, trained interpreters in the educational system or in the public news on television, and zero access to citizenship was granted to deaf people. Granted, there was this law for “Social Integration of Persons with Disabilities” dating back to 1994. One of its articles stressed the need to translate the daily news into sign language and to provide access to information of general public interest to persons with hearing impairments. But the law’s stipulations were not fulfilled, as there were no existing monitoring mechanisms or practical instructions for its implementation. As a consequence, we joined a civil society forum advocating for the defense of citizens’ rights, and, in 2001, filed a lawsuit against the National Television Council for not complying with this particular article. Maria Soledad Cisternas supported us in bringing this plea before the Court. At the time, she was working at the Diego Portales University. This was before she became President of the Committee on the Rights of Persons with Disabilities. The plea was initially approved, and 15 days were given to TV channels to include sign language interpreters in their daily news programs. The TV channels appealed before the Court, which finally dismissed the claim on formal grounds. However, we reached out and collaborated with other Deaf People’s Organizations and more general Disabled People’s Organizations, to raise awareness and create social mobilization. As we said we would appeal to the Inter-American Supreme Court, the government eventually called for a six-month negotiation process, which finally led to the inclusion of sign language interpreters in the daily news in 2002. All this was made possible thanks to social mobilization and alliances with other disability movement organizations.
How did you get involved in actions relating to the situation of persons with disabilities at a regional scale? What was the situation at that time?
Following the process described above, our organization was invited to take part in the Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families (RIADIS). This is how I got involved in the defense of the rights of people with disabilities at a regional scale. At this time, the majority of the countries in Latin-America already had a law for the inclusion of persons with disabilities, or were in the process of drafting one. But most of these laws were not even implemented, because – as was the case in Chile – there were no monitoring mechanisms. Moreover, many of these laws were inspired by the medical paradigm, looking at disability from a health and rehabilitation perspective. At another level, there was the Inter-American Convention for the Elimination of all Forms of Discrimination against Persons with Disabilities, from the Organization of American States, dating back to 1999. The Inter-American Convention was inspired by a medical approach, but at the same time it also promoted a perspective of non-discrimination and social inclusion. This was the situation when the Ad Hoc Committee came into being.
How did you get involved in the drafting process?
I learned through Internet that the drafting process of the Convention was under way, and that there were funding opportunities to support the participation of civil society. So, I filled out the paperwork to apply, and I was finally approved. When I got to New York, I was well acquainted with human rights issues, but I didn’t know anything at all about the United Nations system and how negotiations normally happen there. In addition, no provision for an interpreter had been included in the grant from the Solidarity Fund. So, as I was looking forward to having access to the information and to understanding all that was happening, I joined an on-line list called “Disability and Human Rights” that I knew through RIADIS. That is how I got to know Luis Fernando Astorga and Silvia Quan and, as I could read their lips, they gave me lots of explanations about the protocol and the whole process. They invited me to come with them to the International Disability Caucus meetings that were taking place every day at 6:00 AM. Then, I was invited to join the South Project, when it came into being. This gave me the opportunity to meet with other leaders from Latin America, most of whom I did not know. In fact, I just made my own way, through my application to the Solidarity Fund.
What were your expectations?
My main expectation was to ensure that the rights of people with disabilities, and in particular of deaf people, would be secured. The deaf community had access to almost nothing, not even to interpreters that could translate their voice and express their concerns. I also wanted to have an influence. So, I wanted to represent the deaf community, to ensure that our interests would be taken into account in the global agenda. As I didn’t know much about the UN system, I was not sure that I could have a strong impact on the overall process. I thought that the ones making the decisions were the governments and country delegates, even if they didn’t know much about disability. But at the same time, I had this strong will to change things and do everything possible to secure our rights. I felt stronger being part of a community, and we stayed up all night long to agree on what we wanted to achieve through the International Disability Caucus. I also hoped that the negotiation process would take into account the situation of developing countries, where poverty, exclusion, and the lack of resources are particularly prevalent. Before the South Project, the IDC was only composed of associations from developed countries, Europe, Canada. There was no representation from developing countries, from Latin America, or from the Caribbean or the Middle East. These voices were absent from the debates. The fact that English was the main language spoken also was somewhat of an obstacle for people from developing countries, where few people have the privilege to speak English.
What were the changes brought by the Convention at a personal level? At a more global scale?
From a personal standpoint, I learnt a lot about international law, human rights, and the UN system throughout this process. From this point on, I specialized in the rights of persons with disabilities, and obtained a Master’s degree from the University of Illinois in Chicago on Disability and Human Development. In my daily work at the Organization of American States, I try to use the knowledge acquired during the drafting process to work on the rights of people with disabilities in developing countries. Therefore, the South Project not only succeeded in empowering leaders from the South, it also forged these leaders’ professional knowledge base. It also brought a faith that things can change, that civil society can change history, and this is a learning for life. At the global level, the Convention helped people to realize that the rights of people with disabilities are not only a matter of health and rehabilitation. This led to a change of paradigm, emphasizing the need for harmonizing civil codes that were still deeply influenced by a medical perspective. There is still work to be done and, at a regional level, the disability rights movement continues to deal with these deep-rooted issues. All the leaders that met in New York are still working together. Many of these leaders are now Committee members. Maria Cisterna has now become Special Rapporteur. Ultimately, the whole drafting process managed to empower experts and leaders that are today changing the history of the United Nations.
What are the lessons learnt? What are the challenges ahead?
In relation to the Convention, one of the main lessons learnt is to always include the disability rights movement on equal terms. If the Convention is such a good instrument, it is surely thanks to the participation of civil society. A paradigm shift was brought about by civil society, which demonstrated that it could play a proactive role, coming forth with rich proposals. The challenge is to make sure that nothing at all in the whole 2030 Agenda for Sustainable Development is addressed without including persons with disabilities. This is something that some people still find difficult to understand, as many think that specific plans and laws are needed to deal with disability.