We have a special edition today: an interview with Catalina Devandas, who has been at the heart of international work on disability for many years. In this interview we talk about how she made change within the system and how she sees disability rights today.
Our conversation is a great chance to debrief with Catalina who just finished six years working as Special Rapporteur on the Rights of Persons with Disabilities, a position which guides the international community on disability rights.
We get personal as Catalina shares how her disability and background contribute to her work, about the difficulties of taking her place in elite spaces, but also about how she avoided being stereotyped.
We also get into big-picture questions on where we are now, how disability needs to relate to other human rights issues, what the COVID-19 crisis has shown us and challenges for the disability community going forward.
Talking with Catalina always shifts my understanding of disability and my relation to it. Jump into the conversation to see why.
Disability Debrief is made by me, Peter Torres Fremlin, a freelance consultant. With many thanks to Catalina for being so open to talk and the first guest on Disability Debrief.
Introducing Ambassador Catalina Devandas
Catalina Devandas Aguilar is a lawyer and human rights advocate from Costa Rica. She is now Ambassador of Costa Rica to the United Nations. She was the first Special Rapporteur on Rights of Persons with Disabilities.
As Special Rapporteur she was something like a conductor on disability rights, guiding, cajoling, advising, pointing to where things are going wrong. Special Rapporteurs are independent experts appointed by the UN to hold the international community to account.
Her mandate began in 2015 and was based on three pillars of work: promoting citizenship, economic inclusion, and understanding disability as part of human diversity.
See more about the range of work achieved in an overview on her mandate. Particularly notable are the efforts made for the UN to adopt a Disability Inclusion Strategy, and we talk about this below. Productive until the last moments of her mandate, the International Principles and Guidelines on access to Justice for persons with disabilities are also the result of extensive collaboration.
On a personal note, I met Cata when I was working for her husband Stefan Tromel, who also works on disability issues. I've always been struck by the way her understanding of disability rights runs through her life and work.
Conversation with Catalina
We spoke on zoom: here's our conversation edited for clarity.
Peter: Can you talk through one example of something you did in your mandate, to show the push and pull of what your work was like?
Catalina: It's difficult for me to separate the mandate, because I saw it as a whole. The mandate was planned as a whole project in which everything had to be consistent. We had three clusters: on socio-economic aspects; the one on civic participation, or what we called at the time “active citizenship”. (I don't like that anymore because of the connotations with migration and stateless people, but in principle it was focussing on the more civil and political part.) And then the whole notion of embracing diversity.
Of course, the UN Disability and Inclusion Strategy (UNDIS) was a big endeavour. But we got to the UNDIS because of the work before. It was a combination of many things. Good teamwork, with strategic people in strategic positions. We had resources, but of course resources came because the mandate was delivering results. I needed the money to do the first study that served as a baseline for the Strategy and the money was granted. Then we had people with the technical capacity to do the follow-up on design. The work was strategic so I suddenly had access to the high-level people in the administration and that helps. Perhaps it was good to have some political wisdom, understanding the system and being able to do work because of that.
I think that it was also interesting to see that there was an empty space. It was good to be a pioneer but it was difficult. Sometimes you look to know how this was done before. For me it was more like… OK, let's do it, let's try it this way. Of course, I had a lot of support from the community and allies, because there are always ideas if you work in a participatory manner.
It was interesting how the relationship with International Disability Alliance (IDA) was, and how it evolved. From the beginning I strived to be as participatory as possible, understanding that in the end I had to make my own decisions. It was always good, but in general sometimes you can go faster if you're alone.
It was a very important exercise to go back and find out what the disability community thinks. Sometimes, I had the chance to encourage the community to go faster, saying “look this is an opportunity and it is there to take!”
The biggest challenge with the UNDIS was a tension on the pace of change. At the beginning there were feelings that we cannot go that fast, why is this the right moment? It was a positive tension. Luckily it worked, because it might not have, and I could have wasted an opportunity. In the end everybody just jumped in, it was fantastic.
Peter: I was wondering if you could let us into any secrets of how you convince people, of your charisma. And how you see your disability and life experience as a part of that.
Catalina: When it comes to my life experience, for me, and this is a discussion we’re having more and more, I don't have multiple identities, I have one identity that compiles everything I am: a Costa Rican, a woman, a middle-aged woman, a mother, a mother with spina bifida, a wife.
I have all these experiences that make this unity, and this unity has certain abilities. Being a Costa Rican is a big part of it. There is a national sense that people are nice, they try to find ways of communicating better and engaging in dialogue. I'm a woman, I'm a daughter.
I had a sister with disability that showed me a lot of patience. She had an intellectual disability and so growing up there was always an opportunity to find ways to communicate better, to find ways to convince a person that was not using your same standards of communication. I think that's important when you're in a very intellectual world, when you use the same clues to communicate and you don't think there are other people that aren't following.
As per how I convince people, I think it's this mixture of things. There's a personality issue of course. But it's a lot of work, Peter. It's very personal. It takes a lot of effort to engage with people. You are giving yourself. I think it's important that you're selling something that you truly believe in: that you are convinced that this is important and strategic, then it's easier. People engage with that.
I'm also aware of shortcomings. I sometimes think I should speak less. I think that coming from a poorer environment, not having the academic qualifications of the big human rights experts, with thousands of titles and PhDs. There's a certain status I don't have. I'm a woman in a very machista world.
It was difficult to make a space. Not speaking English perfectly. There were a lot of things I was aware of that I couldn't deliver. I might have very high standards, but still it makes it very difficult to have this sense of belonging to this very elite group of people.
Building that was an effort of self-confidence. You said I'm charismatic but perhaps it's just survival strategies. I thought I needed to compensate for all those things that I didn't have. It's an exercise you do through your life.
It's important to reflect on it for future leaders or experts, especially those coming from the Global South. We have to be aware that while we might not have many of the Western standards, there are issues we can bring to the table that are as important. The connection with the reality - you can really experience and know, you can get an empathy. You understand what it's like not to have social protection, not to have access to your devices, to any kind of income support.
The lived experience. Here I am, this quote “successful woman” but then I went to an institution and I saw a girl that was six years old, completely neglected, and I could see myself in that girl. It could have been me. I could have been this person. I have an obligation to demonstrate that this little girl has all the opportunities to develop and find what she wants for her life.
Sometimes it's very hard because it's very emotional. It's very hard to keep going with that kind of emotional work, but this is why it's important. This is not theoretical; this is what happens to people in real life. That helps to be more outspoken.
Peter: People respond to your passion, did you find people seeing you as an inspiration, like inspiration-porn, including you in a way you didn't want to be included?
Catalina: It also relates to what I was saying at the beginning: there wasn't just passion in it. There were ideas, proposals, solutions and a way forward. I tried to be very serious. It was a very serious job.
You're sitting there with a Minister, the UN Secretary General, the High Commissioner. You need to know your stuff beyond the passion. You go beyond the inspirational, “this is the nice wheelchair user that comes to visit us”.
The other day I had an encounter of that type as an Ambassador - and I was surprised because it didn't happen to me being a Special Rapporteur. People come to me saying “I didn't know you were unwell”. The atmosphere among Special Procedures and the human rights experts is very high level. There's no way to cheat. You really need to deliver something that makes sense, otherwise people won't get engaged, and I would have been a poster-person. That was never the case.
It gave me a platform to make difficult points in a very important forum. Just by being there it made people acknowledge that we are meeting in a not very accessible place.
You make people feel awkward because they realise that they didn't think about issues that were openly discriminatory. Not in a way that was pity-like. These people have all the structure in their minds about how discrimination works and then suddenly they're hit by a realisation they're doing it themselves.
Passion is important, but it's never enough. This is an issue that the disability community needs to work a lot. It's beyond awareness raising. You need to build serious solutions and engage in serious policymaking efforts. We want legal capacity, if you're not able to respond how we want legal capacity… We want no coercion, so how do we move forward with that? It's not just a declaration of principles, it is moving towards that.
I think the mandate was able to do that. We were trying to find academic and technical responses to challenges. For me it was important to say what is the way forward. There are areas in which work is easier, and there are areas in which work is still very hard. The whole legal capacity discussion, the discussion on coercion, it needs to be further analysed.
There are issues that are difficult because they're political or cost money. There are others that are fundamentally based on ableism. When people are thinking “these people are incapable”. When you have that the conversation gets very difficult, perhaps paternalistic, “we know better, we are the experts”.
Peter: We're in a context of global setback on human rights, but at the same time international efforts for people with disabilities have increased. How has this happened?
Catalina: It is true that there's been a setback on human rights, but also there’s been the biggest advancements in human rights in the last decades. Think about the LGTBI movement, advancements on women's rights, racial justice, and more discussions on older people. Things changed, were changing at a pace, in ways that some were not ready to take. People that were quiet suddenly became outspoken against these changes. And then of course you have all the other political and geopolitical issues that use excuses to limit human rights. In the case of women it's quite clear.
Also, we have this identity politics issue. We were divided and conquered. Suddenly we were only fighting for one group, or this other group. Even within the disability community, for specific groups.
What is important with the Convention on the Rights of Persons with Disabilities is that it was able to try to bring together different groups. We were talking about children, women, indigenous people, we were talking about people with all kinds of disabilities. Perhaps a group that wasn't there was older people and the LGBTI community was not fully included. However, it is true that the disability community has been more careful in engaging with more difficult political issues.
We've been perceived — and this is part of the inspirational and pity part — as a different category among human rights groups. Who can say no to persons with disabilities? If you're a politician or a government, you don't want a demonstration of wheelchair users… So we have that advantage, but with it we also have the responsibility of working to advance all human rights for all people. That’s actually changing and more and more we see cross-fertilisation between movements.
Peter: … so people following anti-human rights policies and directions can use disability as a fig-leaf.
Catalina: This is an area that helps everybody save face. We need to be very aware of that. The only way to avoid that is to make sure that the disability rights movement is actually part of the human rights movement. It takes a lot of responsibility: you cannot be against women's rights; you cannot try to ignore, or not deal with that.
In my reports I refer to people with diverse gender identity, the rights of women. We acknowledge these tensions — sexual and reproductive health and rights being one of them — and say that human rights are just one thing for everybody.
That's why I said, we don't have multiple identities, we have an identity that's multidimensional. We fell in the trap of fighting in identity politics, and that helps States — and not friendly States — to pick and chose.
Even with the rights of persons with disabilities they pick and choose. They only talk about certain topics: physical disability, for instance. When you get into the more difficult issues, like institutions, the conversation is over.
And this is very important. With the rights of persons with disabilities it doesn't matter how developed the state is, how democratic the state is, how human rights-based the state might be. The most renown states discriminate openly against persons with disabilities and justify that in the worst ways. You have France, with children with disabilities locked-up in prison-like places. So it's not only about the usual suspects.
Peter: Do you have any words for the international disability community at this time, in the middle of the COVID-19 crisis?
Catalina: that comes back to your question on how far we've moved on the disability community. That was right until COVID. I think COVID showed us that we're very far away from really being there. We were an afterthought, if even a thought. COVID is a very good picture of what is the real situation of persons with disabilities.
We are not there. We are not making decisions. Accessibility is not there, social protection is not there, support services are not there.
I want to be optimistic. The situation could have been worse, because now at least we are aware. We demanded the solution and there were mechanisms people could respond to, even if afterwards. But I think it was an alarming picture that shows us the work is ahead of us, as always.
The challenge that we have is that we need to be strategic. We need to be able to pick the right opportunities to do the transformative change. You don't have a lot of resources, so you need to pick up entry points so whatever you do is going to have a multiplier effect.
To be strategic you need to be serious, to be more evidence base oriented. More engaged in in-depth discussions on how to move forward. For me, I think it was good that the mandate ended, I reached my limit. I started to discover the breadth and the knowledge that is needed to solve many of these issues.
I'm a generalist. We need more and more people that are making efforts to invest and understand the processes of policy making, and the conceptual issues. As a disability community we need to support that. That's the only way we're going to be prepared to respond appropriately and take the opportunities at the right time. To be able to even create the opportunity.
This has to be done in a way that is as much as possible participatory, that is taking into consideration the different points of view of the community. Even though there are groups that go faster in finding solutions, we need to try to keep that link constantly.
It's challenging, this is the challenge for the disability community in general. How do you keep high-level discussions going while at the same time you are nurturing your grassroots groups so that they can follow and provide input that is significant. You need to get the connection so that you can continue to understand what are the challenges and what are the things that need to be solved.
A lot of capacity is very important, a lot of exposure in the mainstream work, which is something we need to do.
For me, taking this new role as Ambassador was an opportunity to have broader human rights discussions. Once I get there, I will always bring the right disability perspective in whatever I do.
We need to go mainstream, with a sound basis. It's not just about persons with disabilities in mainstream positions, because if we have people with disabilities that don't understand the issue it can do more harm than good. That's part of trying to be strategic, to create a support network for persons with disabilities to be mainstream.
Peter: Speaking to you I feel I should work on disability as many years as I can.
Until next time
Thanks again to Cata for a conversation that I learned so much from and will for sure return to. To hear more from Cata you can see her TedX talk on celebrating disability as a part of human diversity.
Congratulations to Gerard Quinn who has followed Catalina as Special Rapporteur on the Rights of Persons with Disabilities.
As usual I have way too many links on disability news and hope to share them with you soon.