Catalina Devandas was the first Special Rapporteur on the rights of persons with disabilities, holding the mandate from 2014 until 2020. On this episode of Disability Dialogues, she reflects on her experience as Special Rapporteur and a key leader of the disability rights movement, and discusses with Gerard the important challenges faced by persons with disabilities in a rapidly changing world.
Transcript
Gerard Quinn: Welcome to Disability Dialogues, a series of conversations with leaders and activists from around the world who are advancing the rights of persons with disabilities. In this series, we will hear from people who are playing a significant role in advancing the disability rights agenda in the global system, in their regions, and at home in their own countries. We will explore success stories as well as challenges. I am your host, GQ, the UN Special Rapporteur on the Rights of Persons with Disabilities.
In 2014, the UN Human Rights Council established the Office of a Special Rapporteur to assist in the implementation of the UN Convention on the rights of persons with disabilities. The office holders are basically volunteers in the UN system.
Our guest, Catalina Devandas, from Costa Rica, was appointed the first Special Rapporteur from 2014 until 2020. Under her tenure, important advances were made in connecting the disability movement with other human rights movements. She was a key advocate for the Disability Inclusion Strategy in the UN system, a groundbreaking action plan to promote disability inclusion across all UN operations, which we discussed at length with Gopal Mitra in our first episode.
After serving as Special Rapporteur, Catalina spent some time as our country's ambassador to the UN in Geneva and is now the executive director at the Disability Rights Fund. This is a major philanthropic organisation dedicated to supporting grassroots advocacy throughout the world. We are honored, indeed, to have her with us tonight to discuss your experiences and especially your theory of change around the world. Catalina, you're very welcome.
Catalina Devandas: Thank you, Gerard. It's a pleasure to be here with all your audience.
GQ: We usually start by asking guests just to say a few words about themselves. So maybe you just say a few words to our listeners about who are the people and what were the experiences that influenced you to become who you are today.
CD: Well, I'm Costa Rican. That's very important. I think that's a central part of my identity. I am a person that was born with spina bifida, and as such... you know, grew up in a Costa Rica that by then, 40 years ago, wasn't as accessible -still isn't the golden standard, but back then, difficulties were bigger.
Also my oldest sister had an intellectual disability, and it was due to her recovery from brain cancer, so she was a cancer survivor. And I grew up in a home in which my father and my mother were very committed to the fight for social justice. So it was like this combination of seeing what we did for life with unions and demonstrations, but at the same time, our internal private struggle to cope with the challenges that we had as a family.
I'm married, I live in Geneva, and I have twins and an older daughter. I'm very proud of them. I'm a very proud mom.
GQ: Can you give our listeners a sense of what it was like to grow up in Costa Rica as a child with a disability?
CD: The experience of my sister and my experience were completely different. I was lucky to be able to walk, and thus I was able to enter schools and to move around, and that meant that I... I was able to just participate as any other child in the classroom.
Of course, that had limitations because the playground was not accessible and people didn't know how to react and how to include me.
My father was a very important champion, and he was always reaching out to schools and making sure that, you know... Bringing plays so that I can be a character in the play and be part of a school activity.
But for my sister, and I want to refer to this, it was quite a different story. She was epileptic and she got sick while she was in primary school. So while the school remained to be open to have her as a kid that was sick, and then was in recovery and everything, once she started her secondary school, the principal called my dad and said, we cannot have her any longer.
And that was it for my sister. Even though my father and my mother tried every single option, there was no real options but a special education, and my sister didn't want to go to special education. So that was a very different story for her because after her third year of secondary school, she had no more options and she became more and more isolated with basically no support services for her. So her life and my life went in completely different directions because I was able to continue to study and she wasn't.
GQ: When your father was very active and your mother in social justice issues, was there a disability rights movement in Costa Rica at the time? How do they connect up these issues?
CD: Well, actually, not at all. When I think back, many of the of the leaders back then were persons with disabilities, but there was never this awareness or even visibility of the issue. So even though we interacted with persons with disabilities who were in the mainstream, they were not fighting for the rights of persons with disabilities. And I even remember myself when I got into university, an organization of persons with disabilities reached out to me and they invited me to a meeting. They called me to say, ‘we are this forum for the rights of persons with disabilities.’ And my reaction to that, I remember, was quite paternalistic. I was like, okay, this is going to be a very boring medical meeting. But still, I'm a very good person, so I'm going to go, right?
But when I got to the meeting, I was 22 years old or 23 years old and... That meeting transformed my life because I was studying law. I forgot to say that I am a lawyer. So I was in my final years of law, and what I found was a group of activists, human rights defenders that were not there asking for treatment of very basic complaints about services, but they were actually talking about human rights and personhood. And I felt that that was just the right combination. I just felt like I belonged for the first time in my life.
And then little by little at home, I think it became... My parents became more aware.
I remember that I went to my law class on civil rights, and we got this lesson on the interdiction, right? So that how people with intellectual disabilities needed to be under guardianship. And I got all the theory of it, and I went home and I said, 'oh, dad, we have to do this'. We have to do this with my sister. And he looked at me and he was like, don't ever bring that conversation back to me. Your sister will never lose her capacity to make her own decisions, and we are not that kind of family.
And then he even said to me, 'are you going to take away her right to vote?' Because for her and for us was very important because we were political activists, right? Even though she always voted against the left, which most of the family supported. But it was... it was I think, one of my life changing moments when my dad told me, that's not the way to move forward.
GQ: Your father sounds like an amazing man who was able to connect the dots between social justice and justice for people with disabilities. I would say maybe two or three decades ahead of his time, which is quite a remarkable story.
I remember I first met you, Cata, during the drafting of the UN disability Treaty. And as the first disability rights mandate holder, you really saw it firsthand, how states were beginning to respond to the disability treaty. Did you notice any trends during your time as Special Rapporteur? What were the main surprises? What were the main obstacles that you detected to change?
CD: In the mandate, it was very clear to me that states needed to understand better what the paradigm shift of the convention was about and that they needed to understand that in terms of policy making. It was no longer about yes, of course, persons with disabilities have rights, and we need to make it right for them. I think that people was there, but they just didn't know how to do it, right? And so when we started discussions, and that's why, for instance, the report on social protection, the report on support services, it was like, these are the tools that you need to enable and to... and to make sure that your communities are inclusive enough and are providing the support that persons with disabilities need to be able to enjoy all rights.
And by discussing more in depth what are the traps that there are in... in policy making and social protection systems that are taught from a very ableist point of view in which you are just conceiving persons with disabilities are those that cannot work and those just need a pension to stay at home instead of thinking of what are the tools that we can give to persons with disabilities so that they can participate in the community?
So I noticed it was about approaches. People didn't have bad intentions, but their approaches were not correct. And it was guiding them through why it was important. Because many states do efforts on social protection, on care, et cetera. How do you make sure that those are not causing harm or perpetuating the exclusion or the discrimination against persons with disabilities? So that was the first thing. I mean, they needed more information, and they were actually asking and demanding that. And through my visits, I noticed that they really wanted to know how to do better, we want to know how to do better, how to make sure that we include persons with disabilities.
What I found, like a real challenge was to get to know those estates where they thought they were doing it right, but they weren't. And normally those estates were the most powerful and resourceful states which have already set such a complex system to provide support or attention to persons with disabilities that they... It was harder to dismantle those systems that were already in place. I think that that was, for me, the resistance of meeting a family member in... in France, for instance, defending why institutions were so important and so different in France, where in reality they are not. But that kind of resistance to change and to be open to dismantle the structures and systems that are in place, I think that was... I think that remains one of the biggest challenges.
GQ: So maybe at a very general level, changing law and policy is just the first step. We also have to dismantle the systems that we've inherited over the decades, basically. And if we don't do that, then they encode ableism into the future and restrict our capacity to do the right thing.
So it's a question of giving them the tools, but also motivating them to carry it forward to its logical conclusion and not stop halfway. Because if you stop halfway, then the old mindset takes over.
CD: I think that is crucial, Gerard. When we were negotiating the convention, I remember all these conversations about, you know, the progressive realization, of course, how we were going to get, for instance, to implement Article Twelve, right? Some people were discussing that this is an euphemism. We are never going to get there. And what for me was what stuck in my mind is what you just said. Like, you cannot stop halfway. You know what the objective is, you know what the final goal is. You can build incremental steps to get there, but you know where you're going and you are always asking for the last stage. Right?
And because of that, I think we've seen important, really significant changes in the way that legal capacity, universal legal capacity was discussed during the negotiations and is discussed now.
I remember in 2006, there were still lots of people that were against the notion, even very smart and committed people, to the struggle of persons with disabilities. But now I think nobody would challenge that notion anymore.
GQ: The conversation has changed, really, and the convention has nudged that change along. It's taken time, but it's moving in the right direction, perhaps. Hopefully. Would you say one reason that states hesitate about change is that although they know the problems of present law and policy, they fear that opening up a Pandora's box will create more risks for them in the future. How do we make them comfortable taking those kinds of risks?
CD: That's a very good question, and I think that it's reasonable to be afraid of, you know... And we have also witnessed stories in which, for instance, a complete radical deinstitutionalisation without setting in parallel adequate support systems in the community could actually leave persons with disabilities in complete neglect instead of enjoying their autonomy and their liberty in the community.
Sometimes, I remember I visited a very amazing service in one Nordic country to provide support to persons with psychosocial disabilities in a completely non coercive manner. And they had such great evidence of why it worked, how it worked over the years, documented. And I'm like, okay, you just need to make sure that this is connected with the main policy makers so that they can take these risks. But that will also mean that we really need to transform our systems and go back.
And I think, Gerard, I also learned that from you at some point. Go back to the person to refocus our energy. We cannot solve issues by having a big policy that will apply to all. We really need to go back and look at the community, look at what are the networks and the services and the opportunities in the community and how we can build on that.
GQ: Yeah. And I think one of the distinguishing features of the disability convention is that it doesn't see change simply as a top down a process, it sees it as a process of coproduction linking together civil society with government, with policymakers, and indeed with others who have fresh ideas about new blueprints for change, maybe in policy institutes or the academic environment.
PART II
GQ: You mentioned a moment ago the question of investment and you started your international career as part of philanthropy and now you're back in philanthropy as executive director of the Disability Rights Fund. In terms of investment strategies and your implicit theory of change, has that changed over time? Has philanthropy evolved and grown and matured as well in this sector? Be really interesting to hear your reflections on that.
CD: Well, resource mobilization remains to be a big challenge for all the human rights and social justice movements. In general, of course, we don't see the mobilization of resources that are needed to advance human rights. And for persons with disabilities that's... We are not an exception to that. We have moved and things have changed, for sure, since the adoption of the convention but still, I feel that we remain not very visible, not on the real surface.
I started in DRF, the Disability Rights Fund, when it was a nascent organization, a very small pooled fund that was.... that had a twofold objective. One was to actually support donors in their journey to support organizations of persons with disabilities because it was a new... a new group, people didn't know so we worked with bilaterals with private foundations to try to connect them with groups and to also teach them about how to interact with organizations of persons with disabilities, from accessibility to outreach and to specific topics of concern, right, and to get them familiar with the convention.
And then the other part that was, how do we make sure that we have a strong movement that will be in their communities demanding change and using the convention to demand that change? We had that wonderful tool, but we didn't have a strong civil society counterpart that would be the one advocating for policy change, for legislative harmonization, for new services. So the idea was to outreach to those groups and support them, enable... I mean, DRF is more of an enabler of resources, connecting people with what they need to hopefully help them or support them to grow.
And so we've seen very interesting changes in the movement. I think we have now a more sophisticated movement. We at DRF were very intentional in bringing the voices of the most marginalized groups, indigenous peoples, peoples with sex, social disabilities, with intellectual disabilities, women with disabilities, LGTBI communities. So trying to make sure that those that are not the usual suspects could be part of the conversation.
And then that has, of course, increased visibility, increased tensions, which is good because there are power dynamics that are being challenged. And this is... this is happening. Still, what I'm seeing, and there is a recent report of US philanthropy, DRF that has a budget under $10 million, and is one of the top US philanthropists when it comes to disability rights. This is no money. We are not seeing the real money.
My last report--that you thankfully presented at the General Assembly--was about international cooperation. And I think that we are still failing. We need the marker at the OECD to be kind of mandatory. It is amazing that we have now 16% of the global population and still resources are not coupled with the population. And, or, and this is very important, sometimes resources that are labeled as resources to support persons with disabilities are actually just public health resources that are not being used to, you know, to promote the rights of persons with disabilities but on the contrary, that can be sending very contradictory messages on, you know, why we need to avoid having persons with disabilities around.
And one thing that it's, and I finished with this, we need to avoid having these intermediaries that are not organizations of persons with disabilities. We need to give the power and the resources directly to persons with disabilities because what we've seen on the disability community for very long is that there are organizations that get the money and very little money gets to the real change in the ground for persons with disabilities.
GQ: You know, in the old days, in the 1990s, we used to talk about capacity raising in very unilinear and narrow terms, in terms of simply passing on knowledge and information. And I think what we missed out is the softer skills in how to use that knowledge to actually bring about change locally and domestically as well as regionally. Has that been a marked shift in terms of funding strategies? Not just to make people aware what their rights are, but to give them the skills to actually put that knowledge to work to generate change for themselves?
CD: Persons with disabilities and their communities, they know what they need. They have the clearest picture and we are the ones that are learning from them on how we translate that to the international community so that we can get the international community to think about solutions to match or to solve those challenges.
We understand that this is a partnership in which we are learning from the communities. And in that process of learning, we also try to provide the support that they might need. One of the things that the DRF has is that we don't impose or we don't decide on what are the topics that organizations will be working on.
We, actually, open and we say, what would you like to do and how can we support you to do that?
Or, you know, is the whole climate change discussions there are many of the people we work with, their houses are flooded half of the year. They're facing the fatalities of climate change and the multiple fatalities that become bigger because of their situations and the lack of access, et cetera. And the narrative that these groups of people in Indonesia and the Pacific Islands are creating is not only a contribution for themselves to enhance their situation it's actually a contribution for the big processes, for the COP, for the people working on climate action to actually acknowledge all the different impacts and how we need to be thinking of a more inclusive responses to address the totality of the challenge. Not having the participation of persons with disabilities means that we have poorer responses to the global challenges we're facing.
GQ: So the disability treaty, to really bring it to life, we have to connect it to the big challenges facing everybody in their daily lives and then making sure people with disabilities are not forgotten about in these challenges. So as a funder, you see it as your task to connect those dots.
CD: Yeah, participation is central. The convention is such a powerful tool because it was indeed the result of a very participatory process, a process in which we all grew together. Because we learned from the deaf community, from the community of persons with intellectual disabilities, psychosocial disabilities, we also kind of compare our challenges.
And I remember that it was very interesting to hear some of the conversations that were happening in the richer countries against what was happening in the poorer countries and just trying to find a balance in which we found not the... not the tool that we wanted, but the actual principle and the standard that was to be protected in the middle of those conversations.
I think that the convention is as powerful as it is because it really reflects the main concerns of the disability community and because the states were able to accompany us in the conversation in a very open manner. Because of course, we were surrounded by all these diplomats and super skillful people that knew how to translate the concerns into human rights standards that would be universally applied. And your work on that process was also formidable.
GQ: It was quite a learning experience and still is a learning experience throughout the world. You mentioned previously persons with disabilities being empowered to participate in the process of change and I wonder how important in that is the ability to forge alliances with other social action movements. Is that part of the toolkit that you want to impart as a funder?
CD: When I mentioned that we are not reaching the surface is because I still think that we need to be working more directly as part and parcel of other social movements. If the disability community wants to be a relevant human rights actor, we really need to work in solidarity with all the other sectors, you know, making their struggles, our struggles. And forget about the us and them and just be us together.
And I think that that happened also. I mean, we do that at the DRF, but also as mandate holders. Perhaps the beauty of the special procedure system is precisely that the cross fertilization that the system has. Right? You have the opportunity and I think that's different from the committee. The committee is a little bit more encapsulated in their own work, which is good, and they have, of course, the relationship with the other treaty bodies. But the intensity in which the cross fertilization happens with the special procedures, I think it is something amazing. We have the opportunity to coordinate with people working in the most different areas of human rights and to challenge and to convince and to raise the awareness. And so I think that the mere existence of a mandate on the rights of persons with disabilities was such a success because it's just bringing the issue into the mainstream human rights conversation in a highway.
For me as a person with a disability, it was interesting because, of course, many things had a change in the way the meetings were organized, the places and where meetings were organized, accessibility concerns that were never part of their conversations before. And just by bringing that just my presence brought that to the conversation. But of course, bringing the issues and making sure that any statement, any joint communication that was going out, had the right language, had the right approach, was very important. And at the DRF, working with civil society, we also tried to do that. We tried to mainstream. We tried to work with the feminist groups, we tried to work with the LGTBI community working intersectionality, indigenous.
Because I remember we started a few years back, the work on Indigenous persons with disabilities. You remember, in parallel, discussing the UN declaration on Indigenous peoples. And there was no single mention to persons with disabilities in that declaration, even though they were negotiated in the same time frame.
So for me, that was an eye opener of how do we still work so much on silos, and how much the identity politics have influenced, negatively, unfortunately, our way of dealing with the intersectionality. So, yes, I do believe, and DRF is committed to work in intersectional ways so that we can build partnerships and solidarity with the rest of the movements.
GQ: Cata, can you just give our listeners some examples of the kind of projects you fund on the ground as part of DRF?
CD: We don't guide the organisations through what we would like, but still we try to connect them with opportunities.
We work a lot supporting organisations of women with disabilities.We work a lot on climate change, and we also try to advocate against any kind of form of coercion or deprivation of liberty through processes in promoting legal reform and legal capacity and support.
We also have worked with extremely marginalized groups. And I also want to thank you, Gerard, because you were kind enough to meet with some of our grantees in Nepal. In societies where you have very strict caste systems, there are certain groups of persons with disabilities that have it more complicated to participate. We try to outreach to those that are outside of the margins and try to help them to get in the margins and then bring their considerations and perspectives to the table.
GQ: You mentioned Nepal, which I visited recently in an informal capacity. And one of the issues that we're really, really interested in is the participation of people with disabilities in peace processes around the world and in peace building, because of the intuition that people with disabilities know instinctively what an inclusive future looks like. Cata there would be a lot of groups out there in Nepal, in other countries around the world interested in connecting with DRF and potentially getting some backing or funding. Is there a call you issue periodically? Do you do that regionally? How would people get in touch with DRF?
CD: Our resources are limited, so we only support, first of all, only organizations of persons with disabilities, organizations which governance is absolutely controlled by persons with disabilities.
Second, it has to be in the Global South. We have some target countries in Africa and we work in the Pacific Islands and Indonesia, in Nepal, in Haiti, and then in Nigeria, Uganda, Rwanda, Malawi and Ghana. But beyond that, we also have something that is called Special Opportunities and Strategic Partnership Grants. And those could be of global nature, for instance, when we supported the participation of a whole delegation of indigenous persons with disabilities in the permanent forum of indigenous peoples. Or it could be like there is an opportunity to have this organization that is doing great job in one international process linked to that. So the care economy, for instance, we can get a group of people to just support them to participate in these processes and those are not linked to the country. So you can apply for those, and for the special opportunities at any point.
Strategic partnerships will be something that will take more time because it's more about building a whole partnership with a mainstream process. And that is... Or when we open the call, and now it's going to be once a year, we're going to be opening a call in the fall, in the fall in the Northern hemisphere for those organisations working in the countries that I mentioned.
And of course you have our website and information is available there. But the most important thing is that DRF can also be a connector of a person or an organization with another donor, with another stakeholder, with a school, with a research center…My dream is to see the organisations that have initially been our grantees graduating and just becoming sustainable and independent and not in need of DRF anymore. I think that that will be my indicator of success.
GQ: Wonderful. And Cata, you've had such an impactful career so far. By the way, your father sounds like an amazing man, and I think you've graduated to the next level, which is, how do you actually mobilise change on the ground and give people the competence, but also the confidence to assume their democratic right to participate in the process of change. And I love your use of the term connectors, building bridges, connecting people, leveraging resources, making sure that the movement becomes much more sustainable and integrated with other social action movements into the future.
Catalina, thank you so much. This has been a remarkably insightful dialogue. Thank you.
CD: Thank you very much, Gerard. My pleasure.
You can follow Catalina on Twitter @CataDevandas. We have a short reading list accompanying this podcast and every podcast which you'll find on the right-hand menu bar.
Do get in touch with us with ideas about topics or potential interviewees. That's it for this episode of Disability Dialogues. The executive producer is Hernan Bonomo. Original sound, design and editing is by Jeremy Bouquet and Thomas Kusberg from the Bulle Media Podcast Agency. And my name is GQ, and until the next episode, goodbye.
