I grew up as a person without any disability, and then acquired a visual impairment as a young adult. As I could make a comparison between my life experience as a person with and a person without disability, this really gave me a feeling of injustice. In my case, it was an important aspect that I was denied rights for being a person with a disability, but also was facing additional barriers because I was a woman. This really generated indignation. At this time, I could not understand my situation from the perspective of intersectionality, but I was experiencing it and I really felt that there was a major discrimination for being a woman. This first led me to a movement advocating for women’s rights. This proved really helpful in my case, as the feminist theory helped me to better understand the social situation that we – I and other people with disabilities I knew – were experiencing. And, this led me to my professional vocation, dealing with the rights of people with disabilities. I first began working in Guatemala, then during the late 90s/early 2000s at the international level. This is how I got to know Luis Fernando Astorga, the Inter-American Institute on Disability and Inclusive Development, and how I also got to participate in all sessions of the Ad Hoc Committee from this time on.
I wasn’t familiar with the UN system. So, I first observed how the process was operating, because I didn’t have any idea of how I could contribute to it. This learning process took place during the 2nd and 3rd Sessions of the Ad Hoc Committee. During these first two years, I got to know the country delegates and all the dynamics at stake to try influencing them. I learnt that those who have a voice and a vote are the States rather than the International Non-Governmental organizations (INGOs). However, INGOs could impact the process, by trying to influence State delegates. My effective participation started maybe from the 4th Session onwards. Eventually, I began participating with my country’s delegation, and this was a very positive experience. The delegates from Guatemala knew very little about disability. This also was true of many of the delegates from other represented countries. In fact, it was a learning process for everyone that was there. Of course, there were countries that were more advanced than others, for example the United Kingdom and the European countries in general. But, in Latin America, it was still early, and institutional knowledge on disability was still embryonic then.
Could you tell us more about the negotiations and the stakeholders that took part to it? The Convention emerged as a result of many discussions, for example on the inclusion of a specific paragraph about women in a given article. There were many debates, which lasted for years. In the beginning, civil society was mostly represented by organizations from developed countries. This changed the focus and the content of the discussions. This was quite a concern for Luis Fernando, who looked for a way to increase the participation of people with disabilities from developing countries. This led to the design of the “South Project”, together with Handicap International, to support the participation of Disabled People’s Organization leaders from developing countries in the drafting process. And, as this participation increased, the idea that there were also many economic barriers to overcome in order to improve the situation of people experiencing poverty grew in importance. This debate became very interesting. It was supported and picked up by the majority of civil society. If you look at the Convention, basically this debate had an impact upon issues relating to access to resources. However, it also raised the question of international aid to help developing countries to reach the standards stipulated by the Convention. This is how international cooperation emerged as a theme. That particular debate was important. It was even included in the Convention’s preamble.
I think that there was a significant change in the way themes relating to disability are addressed. There are now more strategies, government programs, more services inspired by a rights-based approach. Before, the prevailing model was clearly inspired by a medical or charity approach. I am not saying that these kinds of programs have disappeared completely, but there are more laws focusing on rights then when the Ad Hoc Committee began its work, 15 years ago. Then, there is a kind of universalization of the concepts, maybe not of the material situation, but at least of the concepts. The concept of reasonable adjustment [reasonable accommodation] wasn’t even known in developing countries. Now, even though it is still not put into practice, it is an integral part of the claims of people with disabilities. There have been advances in the conceptualization of the approach taken to target the rights of people with disabilities. Services to favor independent living also emerged in such a context. Disabled People’s Organizations are getting more and more empowered, they are more aware of this focus on rights and there are more claims emerging. This change might be more visible in the developing countries. I would say that these are the most significant and visible changes. Another of the Convention’s valuable contributions as a human rights instrument is the intersectional analysis of human rights violations. If people with disabilities have reduced access to services, we believe that if disability combines with another factor, such as being an indigenous person or living in a rural area, this can make a person’s situation even worse. And the Convention picks up on this. This is an interpretation that has enriched international human rights law.
There is still a lot to be done to implement the Convention. And even where progress has been made, the economic crisis has increased the risk of backtracking. In some European countries, there were social programs where the participation of people with disabilities had been progressively facilitated. However, the rights of people with disabilities are now being put at risk. This also gives a bad example to other countries. There is another threat, which is the fact that some States have ratified the Convention, but are not fulfilling their obligations. Usually, the Committee examines the progress made by States towards Convention implementation and then issues recommendations. However, some States turn a deaf ear to these recommendations. Other States feel that these recommendations interfere with their sovereignty. These are real risks, and here civil society must play an important role to compel governments to act.
My hopes mainly rest upon civil society. The more civil society makes demands, the more progress there will be. If civil society remains passive, governments will be left to alone in this process. It is also important that people with disabilities reach decision making positions. In my country, civil society is doing all the work, but it would be much easier if there were someone in a decision-making position specifically addressing the rights of persons with disabilities. I take as an example the achievements made by the movement for women’s rights in terms of political representation. Indeed, nowadays it is rare that women’s rights are not taken into account. This carries a strong message that must encourage the empowerment of civil society, and its participation and attention to the interests of the general public. Often, we tend to focus on specific topics, depending on our own interests. I think we must be more strategic and attend to politics as a whole, considering human rights as something integral. I think that the disability movement must take gender focus into consideration, and incorporate the interests of other more discriminated groups within society, such as children, elders, and indigenous people. Even if the Convention provides this intersectional analysis, I still feel that, in practice, people with disabilities find it hard to connect with other struggles.