Solidarity Language of Rights Cultures of Respect 35June 01, 2023

35. Disability Rights: Activism as a vital ingredient for victories

Hosted by Akwe Amosu
Produced by Peter Coccoma

The death in March 2023 of legendary US disability rights activist Judy Heumann provoked an outpouring of grief but also heartfelt celebration of a leader whose personal qualities, strategic instincts and sheer grit helped secure victories that profoundly improved peoples’ lives. Although she occupied senior official positions in the course of her life, Heumann never lost her faith in building power with other activists at street level; while the goal might be the passing of a law or issuing of a bureaucratic order, the pressure came from protest – persons with disabilities and their allies blocking traffic, occupying buildings and often literally putting their bodies on the line for the cause. In this episode, three disability rights advocates reflect on this legacy, and ask whether activism is still a central tool in their community’s struggle for rights. Catalina Devandas, Alberto Vasquez and Peter Torres Fremlin discuss critical factors like inclusion and identity as sources of both strength and division, and the pros and cons of integrating disability rights work in the wider human rights movement.

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The Interview

‘We need to be as courageous as they were’

For Catalina Devandas, recalling the disability activism of the 1970s and 80s, today’s advocates may have become too comfortable: “We have gained spaces with states and governments and the community doesn’t want to lose those spaces.” Alberto Vasquez agrees: “We got too close to institutionalized spaces and our focus shifted towards, ‘we need to advocate with the government, we need to advocate for passing a law, we need to advocate with the Committee on the Rights of Persons with Disabilities’ – I think we lost the base! We get trapped sometimes in these institutionalized channels. I think at this point we’re realizing we’re not necessarily bringing the change we wanted and there have been losses in terms of grassroots organization.”


Akwe Amosu: Hello and welcome to Strength and Solidarity,

AA: I’m Akwe Amosu… here with episode 35 of our podcast about the tools, tactics and strategies being used to advance human rights around the world. And this time – the disability rights movement has changed the world in the last 50 years… Is the activism that drove those gains, still at the heart of the movement? We have a discussion in the studio about remarkable victories and the critical choices ahead.

AA: The documentary film Crip Camp, opens in 1971 at a summer camp in the United States – a group of teenagers away from home, free from parental rules, care and authority. What they have in common is that they are all disabled and living in an America that is deeply prejudiced against them. As the documentary unfolds, you see a number of these young people become adults and move into their power as rebels and organisers, taking on a condescending state and a complacent society. A central figure among them is a young woman, a wheelchair user, called Judy Heumann who eventually ends up leading the longest-ever occupation of a US federal building by a courageous and committed crowd of disabled activists to win reforms desperately needed for disabled people to live more dignified, fruitful and independent lives. The movement’s campaigns eventually led to the passing of the Americans with Disabilities Act, the ADA, which in turn was key to the emergence of a global disability movement.

In short, this generation of activists, despite facing huge obstacles, brought about a revolution both practical and conceptual in the way persons with disabilities were seen and treated. And the Crip Camp documentary shows us just one of the moments that fed into that remarkable string of victories – a brief few weeks where young people with disabilities were allowed – mostly for the first time – to experience expectations that did not reduce them to dependents, to feel self-respect, exercise control, talk honestly with each about their lived experience, and make powerful demands of themselves and others. The film is a rare window on the first stirrings of a movement’s formation.

I note all this now, because that extraordinary activist and leader, Judy Heumann passed away in early March, triggering an outpouring of grief and celebration of her leadership. It seems like a good moment to reflect on her and her fellow organisers’ activism and how they achieved so much, but also to ask questions about the choices and decisions facing disability rights activists now, to ask what  questions and challenges the current generation has to deal with, and how it is responding? 

I asked three people to join me: Catalina Devandas, director of the Disability Rights Fund, Peter Torres Fremlin, British writer and publisher of the Disability Debrief newsletter, and Alberto Vasquez, a disability rights advocate and co-director of the Center for Inclusive Policy.

AA:  Welcome to everybody. Will you tell us who you are, where you come from, what you do? Let’s start with you, Catalina.

Catalina Devandas: Hi, everybody. Well, my name is Catalina Devandas. I am Costa Rican. I’m a mother of three. Currently I am the executive director of the Disability Rights Fund, and I had the privilege of being the first special Rapporteur on the rights of Persons with Disabilities, at the UN.

AA: Perfect. Peter Torres Fremlin, tell us about yourself.

Peter Torres Fremlin: Thanks, Akwe. I’m Peter. I’m a British disabled guy. After growing up in this country, I worked a lot abroad, and then during the pandemic I came back and I now write about international disability news on Disability Debrief.

AA:  Excellent newsletter. And Alberto.

Alberto Vasquez: Hi everyone. My name is Alberto Vasquez. I’m from Peru, but now I’m living in Geneva. I work as co-director at the Center for Inclusive Policy. I see myself as a disability rights advocate. Um, I’m also part of this organization called Redesfera, which is the Latin American network of people with psychosocial diversity.

AA: Thank you. And yes, if you are listening and you’re thinking, I’ve heard that guy before, it is indeed the same Alberto who gave us a terrific reflection on the impact of the Convention on the Rights of People with Disabilities. Uh, if you didn’t listen to that episode, you should go back to it because it was a great on-ramp into the issues that are central for the movement for disability rights. So let’s just jump in. The reason why we wanted to have this conversation was – it was triggered by the passing of Judy Heumann. There was such an outpouring of grief, celebration, of pride, recommitment after her death and it really got me thinking about the power and contribution of an effective activist. And I wanted to know what people in the movement think about as the most seminal, critical tools that she tested and bequeathed to a wider movement. Catalina, I think you knew her quite well and so condolences, would you like to just start us off by talking a little bit about your own sense of Judy Heumann’s contribution?

CD: Yeah, thank you. I mean, Judy was our Martin Luther King, right? That’s the stature of Judy for, for the disability community and when you think about her legacy, you always think of the big achievements, of course, the regulations, the ADA and, and of course those are fantastic achievements that transform the lives of persons with disabilities all around the world, right? I mean, without an ADA, we wouldn’t have a Convention on the Rights of Persons with Disabilities and all the impact that you discussed with Alberto on the previous podcast. But one of the things that I believe meant the most for us, and certainly for me, was Judy had a new style of leadership. She brought participatory leadership. She was, absolutely revolutionary in that regard, at that time, right? The, the take of the federal building, I think, and the way in which she organized people in the building in the most participatory way we’ve ever seen, in the most horizontal way. I, I think it’s amazing. And that is something that, I believe we kind of lost because we got trapped into a lot of, formalities in the movement. But I think that for me, that’s one of her biggest, contributions.

AA: You talked about it as leadership Catalina, but it sounds as though it’s also a real talent for organizing, a sense of being able to figure out how to give people the energy and the confidence to move forward as full agents in activism, not just to be told what to do.

CD: Yeah. But more than a coordinator, which she also was. I think that perhaps this is the other angle, the mentorship and the facilitation. Judy was an enabler, she was humble, even in her greatest moments. And what she was always doing was making sure that everybody could bring the best out of them and making sure that people will have the tools and indeed, when I met Judy, um, I was just starting as a very junior person in the World Bank, knowing nothing about the institution, a woman with a disability. And she just came to me and treated me like if I was this genius and I was like, well, you’re Judy Heumann. And she was treating me like a complete peer and also always reinforcing positively, what your contributions were. And that was through her whole career with everyone.

AA: Alberto, Peter, you both knew her too, I think. Does that resonate? 

AV: Um, in my case for sure, I, I met Judy first because she was visiting Peru and Catalina put us in contact, when she was already in the State Department. And since then, she started really caring about me. Every time I will see her, she will ask me how is your family, um, how is your partner? And she will get upset if I didn’t update her about, about my personal life. And then she will talk about politics because she will always jump to that. But I think it shows a caring leadership, which is something very important, and someone especially very accessible, which is, <laugh>, something important to the disability community, <laugh> someone very accessible for a young activist, and I really always value that. And she will be accessible in different ways. Like, you will have so many stories of people just meeting Judy in the street and ending in her house, watching a movie or having dinner, um, accessible in the way she explains how disability works, how barriers interlink, and I think something else that we can add here is she was also very good building alliances. And we can see that from her early work in the US mobilizing, like building alliances with other groups, with the Black Panthers during the occupation, with women’s rights movement. She was very good building bridges.

AA: And, and Peter, why are those things so important? I think they would be important in any movement, those capacities, those talents. Did they have a specific importance in the disability context?

PTF:  Yeah, I can only echo what Alberto and Cata have said about this way she believed in people. I knew her much less, I only met her once. But just from meeting her once, like Cata said, she treated you as a peer, even though there are so many ways that you don’t feel like that. And I think something that underlined that, one of the gifts that she gave to us and is really transformational in terms of disability, is like what we believe about ourselves and others, right? And where we see value and what we are striving for. She had that sort of very intense belief in herself, in human equality. And the other side of that is not taking no as an answer. Like I think definitely how she dealt politically and also personally with her disability, she fought in situations that I would compromise and just get on with it. So just even in terms of what she left us – things like Crip Camp and her biography Being Heumann, they show someone doing those things and it made me revisit daily experiences in my life and think, ah, maybe I can behave differently. So just kind of this vision, like a vision of society and what fights to have… it’s really fundamental for a minority group that’s very separated and isolated to find these connections and these profound changes in legislation that she’s left all over the world – she’s the one, perhaps more than anyone that connected us with each other, as you can see, from not really having a limit on how much she spoke to people – there were these stories about her calling people at three in the morning or 11 at night, just sort of, uh, <laugh> just, it’s a very, constant thing. I dunno, like did she have a spreadsheet?

AA: Catalina’s laughing and nodding over there – did she have a spreadsheet?

CD: No, I don’t think she had nothing of the sort, she just did it, indeed, the personal part was important to her. Like, “I want photos, how are the girls?” and she made every effort possible to get to know them. One thing that she also brought and I, I loved, Alberto, with the accessibility part, I really think it was amazing that way in which you frame it. But Peter, you were saying her role in connecting us, I think with pride and, I mean, she was tireless as you saw, she worked until the last day of, of her life, and, and she was so committed to the principle of participation, what you see in the Crip Camp is this sense of belonging that suddenly we were able to, to find, right? Like, oh my gosh, we, we identify with that. We understand, even if we live in different countries, even if we have very different experiences, generational experiences even, right, it’s a very different generation. Still, she was able to help us understand that and to bring that, I think the power of the lived experience like no one else before, right? Her statements at the Senate in the US, I think they were like this, like, okay, this is the power of my lived experience, and this is the most powerful statement. You don’t come to me to tell me you understand that, right? I still cry when I hear that, uh, when I see that video.

AA: What emerges for anyone who didn’t know her is just what a remarkable personality she is, quite apart from her organizing and strategic skills, which were obviously also off the charts. At the same time, I think we all know that a movement can’t run on charismatic individuals. It has to be possible to, as it were, domesticate these qualities that we are describing, in the movement and among its members. And so I’m very curious – what are the things you see now in the way that people are working that are important for the movement, less because Judy Heumann gave the movement those qualities, but more because they are actively working. What is really powerful for you right now in in the movement?

AV:  I would say that I think one contribution of her generation is the independent living movement, and, this idea that, how do we ensure that people with disabilities can live independently in the communities? And I think today, more and more, we’re coming back to this issue because we feel that’s one of the key aspects of ensuring autonomy, ensuring independence and how this plays out not only in terms of public policies, but how the disability movement organized in terms of who represent who, how do we ensure that we people with disabilities represent ourselves and, and are the ones taking the lead in discussions about our rights, about policies, about social justice. And I think that’s a very important aspect that is still very present. Uh, probably we didn’t realize it yet, we didn’t achieve what we wanted. But that is still very present from that specific period of time that we still carry on.

PTF: It’s been a big change since when she started working. Disability over the past 30, 40, 50 years, uh, that she was working is in a very different place, in terms of the opportunities available for disabled people. Um, the opportunities that I had growing up – I’m in my mid-thirties – they were influenced by, Judy Heumann, the people that fought with her in the States and in the UK and how that kind of echoed out and supported each other, a lot of doors have been opened, a lot of spaces have been made accessible. I think that part of her legacy is a lot in the individuals as you’re hearing today. People like Cata and Alberto and myself, if we’re doing something on disability now, Judy has made a big contribution to it, um, in key parts of her career and work. Opened a lot of doors, helped, shaped and connect a lot of individuals, helped make inroads into institutions. Like I think that something that’s been very, very active in the last years is those international organizations looking at it more, and she was among the first opening doors there.

AA: It’s clear that the movement has benefited enormously from her leadership. If you are looking at the next 10 years of work, what isn’t in the mix that’s needed? What, what is missing from the present environment for activism in the disability space that needs to be added?

CD: I mean, I think that we need to be courageous as they were. Um, I think this notion of participation is fundamental, to bring persons with disabilities as the center of the conversation and making sure that we own the advocacy. But when you see what happened in the federal building in San Francisco, it hasn’t happened ever again, right? You know, I think that the disability community has come to a comfort place in which we have gained spaces with states, with governments and it’s a community that then doesn’t want to lose those spaces, although we are losing a lot of the gains. And I, I agree with Peter, it’s a completely different world. We had a completely different set of opportunities. What I see is that the bravery, the clarity that they had on, you know – this is our political stand, this is really about civil rights, and also the innovation. Uh, it wasn’t about – I think we are a little bit trapped in the formalities, right? We have to be organizations, we have to receive grants, we have to finance the movement, right? And they did it without resources. They did it without a formal organization. There were people, volunteers, but it was more an, a spontaneous manifestation that came together and said, okay, what is the, what is the root of this? What is our, our anger and our frustration? And how do we combat this discrimination and ableism? And I think that now we need to, and that’s – somehow it’s coming back – the discussions on, on social justice are bringing that back. The discussions that Alberto will mention, probably on, on solidarity, more than intersectionality – I also think that we got trapped in the conversation on intersectionality a little bit more than we should have, but it’s more about how do we work together to change the world without the fear, and without being constrained by, “are we going to lose the benefit? Is the government going to be, you know, like we have to be more careful because everybody likes us.” So no, I, I think that’s – it’s challenging and, but, but we need to, we need to do it, and we need to challenge the model, the business model that continues to have others representing persons with disabilities.

AA: So fascinating. So many different threads that you’ve just thrown out there and I, I really want to not lose, uh, any of that. But just wanting to pick up on the courage and the problem of people becoming invested in what has been won and being nervous about losing it. This is a theme that comes up a lot in the podcast and in, its wider project, the Symposium – that in some way, a kind of a powerful push decades ago, second half of the last century, really made big gains but that the activism in some way got blunted, became more of a professional project, and the centrality of activism in having won those gains didn’t mean that the activism continued. And so you end up with this environment in which people need to reconnect with militancy, with that courage that you mentioned. Does that resonate, Alberto?

AV: It does, it does. I think we’re following the trajectory of different movements in terms of getting more institutionalized. And through that, you know, following the logic of project-based, NGO-based advocacy, which sometimes you lose this, this individual drive that you have when you are a mobilizer at community level, no? Um, I think something important, bringing it back to Judy, is like, they really help to put disability, or persons with disability as part of the civil rights movement in the US, and then later I think one of the biggest achievements we have had is to put disability in the conversation of human rights internationally. And I think through that, we got too close to institutionalized spaces and, and, and a lot of focus has been shifted towards, “Well, we need to advocate with the government. We need to advocate for passing a law. We need to advocate with the Committee on the Rights of Persons with Disabilities, we need to…” and I think we have lost, okay, the base – how do we support each other in the communities to achieve social justice?  And of course, mobilizing and organizing to achieve change. But I think we have got trapped sometimes in these institutionalized channels that I think at this point we’re realizing, well, I’m not necessarily bringing the change we wanted. Um, but through that process, uh, I think there has been a lot of losses in terms of grassroots organizations.

AA: Peter?

PTF: Yeah, I want to really echo and reinforce what Cata and Alberto have said. I think there’s a couple of aspects of her work that maybe we can see we aren’t necessarily taking on in the same way. We’re mentioning a lot the 504 sit-in, which was in ‘77, in a federal building in San Francisco, it’s the longest occupation of a federal building in the US. And it’s really striking seeing that, as Alberto said, cooperation with lots of different forms of civil society and other, other identity groups and that kind of cooperation, it’s unclear to me that we have that same extent today, um, especially more widely in our international work, we get very into the disability silo, there isn’t that sort of evident cooperation with other movements. I think something at the heart of what Judy was saying and what I really remember from the conversation I had with her was about mobilization of disabled people and that being the basis of it. Apparently, she would just find people on the street and recruit them, and like I say, her limits are in a slightly different place from some of the rest of us, but that mobilization I don’t think is being invested in, in these institutional changes that we are making. There is stronger and more voice of disabled people, but there isn’t that investment in the door-to-door mobilization and bringing people, disabled people into the movement. And I wish if, if I’d been able to talk with her again, I would be interested in how she reflected on power, right? Because she worked for the World Bank and the US State Department, and it’s like, well, okay, they can do wonderful things. But, as we know the US State Department in the period she was working, it was sort of agent of violent imperial power. So how do we question that and the institutions that we are in? Um, and especially now, Akwe, I’m really interested you, on this podcast, explore these themes of how do we work on rights when the government and society is maybe not so interested in those approaches, and they don’t resonate in the way that they did. And I think that’s a very real challenge for us on how we frame disability issues, how we make our claims and how we cooperate to achieve them.

AA: Well, this seems like a really great place to kind of dig in because, you know, I’m very interested in what you just said about the silo and about the sense of not necessarily having the alliances and the solidarity that you saw in the 504 sit-in, given what Cata said about having invested heavily in a conversation about intersectionality and, the importance of cross-rights movement links. And I’m just curious, you know, what’s happening there? Why isn’t the organic connection being made and growing and deepening, given that, you know, people love success! And if you look at the progress in the disability rights movement over the last several years, it ought to be attracting a better set of alliances and energy from others, at least, to the uninitiated. Anybody’s reflections on that? Yeah, Alberto.

AV:  Yeah, I mean, I, I think this silo issue is a two sides problem. My experience in working in Peru and, and still trying to build something at regional level is, um, I think sometimes human right movements are not really willing to engage with the disability community because they find it too difficult, uh, accessibility is seen still as a cost. They still don’t see how raising the profile of disability will actually, benefit the work they’re doing. And I have seen it directly in Peru with many of the human rights organizations, when the Convention on the Rights of Persons with Disabilities was adopted, they jump into disability to see if they could get funding, and they soon realize funding will go to organizations of persons with disabilities and, and then they drop it! So I think there is one angle there of lack of solidarity from major human rights groups, but also this incapacity to connect to wider agendas and – I would say – to see through intersectional lens how disability is part of all the agendas they’re working on. But that’s one side of the problem. I think the other side of the problem is, we came late to the human rights discourse. And then I think as a movement, we’re still advancing many things, at international level: achieving recognition of rights, very difficult conversations that it would have been impossible to make, like conversations about “let’s eliminate guardianship” are possible today. And I think because of that, we have been working alone. So we came late, we came alone, and we kept working alone. And we still feel we can carve something out of the system. Um, I think it will end eventually, but this working so long alone, it makes you really talk to each other and feel, okay, we’re advancing; but I think what we are realizing more and more is these gains that are made at the institutional level, at the UN or at legislation is not really making a difference in people’s lives. And I think we’re getting to that point. And, but I think there is an additional problematic issue with working alone, which is, many people in the disability rights community have been people that work, that do advocacy at an organization of persons with disabilities. They don’t see themselves as human rights defenders. They don’t see themselves as working on human rights. They feel themselves, they work on disability development. “I work on inclusion,” and this moving away from the core language of human rights, I think is affecting too. Because it takes away to some extent the solidarity with other groups. So I have listened conversations of disability advocates saying, “well, maybe we shouldn’t engage on these issues about LGTBI because maybe it’s gonna affect the advocacy we can do, or the gains we can achieve,” or “maybe we can work with this country that it has a very bad human rights record, because I think disability will be an easy way to work there and make achievement for the disability community,”  and not as a strategic way to bring the conversation to human rights, just to achieve something for the disability community. And I think those are problematic issues we need to raise.

AA: Catalina, you were looking doubtful on that point about the avoidance of the human rights language.

CD: Yeah, I mean, there’s many things – I, I feel, that we need three podcasts! But I think we have, on the one hand, of course, identity politics that was not exclusive to the movement of persons with disabilities. We were put in different boxes to fight our struggles and then divide and conquer. I think that’s, that’s a very clear equation. So, it’s not exclusive to us, but second, of course, there is a lot of stigma in ableism that operates structurally across, so like we are human beings and we cannot detach from the environment in which we live. So, it’s very strong to actually overcome the prejudice that you have against persons with disabilities and mingling with the team – for some people it results in something that is unwanted, unpleasant, less important. And I think we have to say it out loud because it is true, right? The level of innovations that the Convention of the Rights of Persons with Disabilities brought to the human rights discussion would have, if it would have been another topic, would have been like the topic in which everyone wanted to be working on now. Yeah? Like the new kid on the block. But it wasn’t, and it hasn’t become as explosive as we expected it, right? I also agree with Peter that a lot of progress has been made. You know, I participated in the process of negotiation of the Convention, and when we were negotiating you know, full recognition of persons with disabilities to make decisions that have legal implications, there were a lot of people that were telling us, “okay, those are euphemistic aspirations, right?” No longer anyone will tell you that openly, right? And we’ve seen jurisprudence changing across the world in different countries, legislation, so changes are happening and are significant changes, right? So I don’t want to underestimate the progress that we have made and the achievements that we have. But it is true that, I work now, as I said, with an organization that supports persons with disabilities in the ground to advance the Convention, right? And so we work in Indonesia and Haiti, and, uh, you know, in Nigeria, we, we indeed, uh, face the challenges that Alberto was mentioning with regards to – especially in an African context, right? – “Why would we like to mingle with LGTBI communities? This is too dangerous, right? I mean, we rather not to,” right? And in our organization we think we have to be working with them in solidarity because what do you do with persons with disabilities that have diverse sexual orientation? So you don’t include them? They don’t need access, they don’t need support?  We need to include them, right? But it is a difficult conversation because of the contexts. But, as much as we have been excluded, we are also very exclusive, persons with disabilities have become a little bit um, you know, we are not making the effort, right? We are not making the effort to talk seriously about gender-based violence, seriously about women’s rights issues and sexual and reproductive rights.

AA: And Cata, why do you think that is? Is that because the people who don’t want to talk about it actually believe that it’s a problem that doesn’t belong in their community, and so it’s not their problem to talk about?

CD : Yeah, I mean, it’s multiple layers, right? It’s politically complicated. It might not be something that they feel part of, but at the end of the day, that is changing. And what we are seeing in the ground is that, for instance, I, I have among my staff, you know, a woman an Indonesian that is a wonderful advocate, and she raises her hand and she says, like, “because we are human rights defenders, we need to be…” you know, there is now more awareness they’re working on climate change with, you know, with the climate action movement. I mean, people is just trying to solve their problems in the ground, disregardless of the structures, and as a donor, I have to say that the philanthropic community has also somehow helped it to create this kind of institutionalization of the movement. Anyhow I stop there.

AA: Excellent. Peter.

PTF: Thank you, Akwe, for hosting this discussion, we don’t always get to get into things like this within our sector. I want to show how concrete it is – these things that Alberto and Cata are talking about – in whatever context, when you start talking about disability, it’s very easy for someone to see that as a siloed issue. So like, writing about disability, I’m just aware, look, I’ve used that word. I’ve got to try and open people’s imagination in how it’s connected to things. And as I’ve tried to make those connections with other areas, I then also feel this dynamic from within our sector of like <laugh>, why are you broadening it? This isn’t something that shows something about everyone. This shows something about us. Let’s keep it focused. So you feel those dynamics just in everyday speech.

AA: Before you go on, let me just ask you, I mean, that ambivalence is incredibly natural, isn’t it? I mean, if you are used to getting your strength from the people around you who are making common cause with you, and Peter comes along and says, no, no, we need to bring in all these other people with their attitudes and their exclusionary assumptions and their condescension, people are very reasonably saying to themselves, no, why do I want those people in my struggle?

PTF: So, so absolutely. Absolutely for sure. Um, but I think sort of maybe my counter-argument in that debate is that, when we think about disability, we’re thinking about 10-15% of the population, sometimes more. But that isn’t the number of people identifying as disabled people – most of those people wouldn’t use that term about themselves. So, I think you’ve always got sort of like a minority representing a certain group, right. In disability, most of the group doesn’t necessarily think that they’re in the group. So we’ve got kind of a special challenge there. The thing that I wanted to add about representation was, as well as these issues of these kind of horizontal connections with people with, with different identities and with the different identities of people within our own community, is this shifting relationship with the state, right? And disability brings up quite interesting things there, because we believe in the state, right? And we believe the state should help us more, and we need support to realize our rights. And a lot of our movement is based on that. But we also have a strong belief that it’s not delivering, right? And it could do more. And I think some of the innovations that Cata mentioned is this innovation about participation and representation and that a group about which policies are made, should have a voice in that. So in some countries you see that disabled groups have achieved that in a way that other groups and other populations haven’t. And so I when we say “nothing about us, without us” what kind of messages does that have for representation, for how citizens participate? And I think that these struggles that you see democracies are having, everywhere that we still have democracies, you see that same question about what, what is our representation in the existing political parties and I think that’s a real way to say people and the movement are at the crux of these transitions in rights and struggling relationship with the state.

AA: So can I go back to the question of inclusion within the movement for disability rights? I mean, from what you guys have been saying, I have a sense that there’s not necessarily always full solidarity and connection, even within the community of disabled people. And so, I’m curious about how, how that affects solidarity or the building of a powerful movement. Uh, I mean, we’ve seen that in many other movements, so I’m not singling out persons with, with disabilities when I raise this question. I think this ambiguity, this ambivalence that we were talking about earlier, it’s across the board, it’s in all communities, but I’m wondering how, how it affects the fight for disability rights, if at all.

PTF: Um, I think I mentioned that group of disabled people that wouldn’t necessarily call themselves, disabled people. So I think that’s quite a profound tension and one of the ways that other groups don’t want to work with us. They say, “look, I’m old, I’m not disabled.” “Look, I’ve got HIV/Aids, I’m not disabled” et cetera, because they still have that kind of negative conception of disability. You also hear that from disabled people. Like, I have this condition going on, but I’m not disabled. Right? Like we haven’t yet gotten that disability pride across. Like you said, it’s a tension in all movements. If you see how it played out in the policy and the Convention on the Rights of People with Disabilities, there are no exceptions, right? <laugh>, If you ever try to make disability policies, the first thing that comes up, they’ll be like, “okay, you guys can do jobs, but not all of you can, right?” <laugh>, right? “Some of you have the right, but not all of you will have the right to vote, right?” So no, I mean, “a lot of you can live in the community, but like, come on, seriously, like, not all of you.” There’s always that tension. I think that was an amazing moment of coalescing, but since then, I’ve always felt, there’s the force that brings us together and the force that pulls us apart.

AA: I mean, the reason I’m asking about it obviously is not because it’s important to call people out. It’s because it can affect effectiveness. If you want to build a powerful movement, uh, it’s got to be able to show up for itself. People within that movement have got to be able to build sustainable, durable alliances that continue, even under pressure because the divide and rule pattern that you are describing is a standard tool for weakening movements for rights. And so when one asks the question, it’s not trying to find a weakness. It’s more trying to understand what needs to be done to make sure that that particular tool doesn’t work against this movement for rights.

AV: I think it relates also in terms of cultures of respect and, and solidarity between the movement. Um, and I think, again, this is probably the experience in many human rights movements, but I think it’s something that we need to problematize more and talk more in the disability sector. Probably there are big difference between what happened at international level and what happened at grassroot level. But my experience working at different levels – in Peru, then the regional level, now international level – I feel some threats that keeps coming back in terms of not standing to bigotry or bullying when it is sometimes very obvious in, in, in the room. And that brings many angles from sexism, homophobia, transphobia that are embedded in many of the discourses, even the public discourses around disability advocacy. And I think that’s something we need to problematize more because on one side, of course, that put us more and more in narrowing our opportunities to engage with other movements. But inside the movement, and I have experienced it, you get really tired and you get frustrated. And many people drop from advocacy, and I have seen it permanently through the work in Latin America, people drop because they feel sometimes there is too much violence, there is too much abuses of power that we just keep going with. And, and I think that’s important in the disability community we talk about those things. And I don’t want to put you in the spot, Peter, but you were raising very important questions, this week in, in your, in your newsletter about, does the disability sector walk the talk? Are we as inclusive as we say we are? Are we providing a safe space for people not only to work, but also to do advocacy? And I think those are important questions.

CD: I think that this is progress. Just having this conversation is progress. Um, what is amazing is that the movement didn’t have the tools 15 years ago, 20 years ago, to even have the bandwidth to question, to put some questions forward, right? Twenty years back, it was about let’s make sure that all types of impairment are represented, right? It was like the kind of, “avoid the wheelchairs and the blind people be the rulers of the movement,” which was the case but it’s no longer the case, right? I think the movement is diverse. We have lots of challenges, but those challenges I think are the reflection of the progress we are making and how we are moving forward, with the movement, right? We needed to come together, join forces and give a joint message to the international community: “That is what we want. And we are not taking any less than that.” But after 15 years, we cannot expect that we will have always a unified voice because we are a diverse movement. We are diverse groups. We have increasing levels of sophistication as well. So it is true that it can become very complex. And I was reflecting on the level of, of sophistication that we have to engage in social policy discussions that we didn’t have many years back, right? And it is also very difficult to have someone that has that sophistication to influence a very complex, national policy to also be knocking doors to create a community-based movement, right? So we need people everywhere, I think that is exhausting also because for, for disability communities everywhere, all the themes, all the time. But the younger generations are not concerned about these questions anymore with us. I was in a meeting the other day with a very powerful young activist from Mexico, and she’s like, “I’m not gonna accept anyone to tell me how to do it, what to do it, we are not gonna accept any conditions. This is our agenda.” One of the things is, how do we take care of our activists, right? “You’re not taking care of me. You’re not listening to me. I’m not engaging with you. I don’t care if you’re gonna give me $10,000 or $1 million, I’m not gonna play by your rules.” This is what we need. And this is the powerful statement that we want to be listening to all the time, and that is happening, but we have to also be able to, as Judy did, to facilitate these kind of people to bloom, right? And this is something we didn’t mention, but I think that one real challenge the disability community has is the renovation of its leadership. We have leadership that has been there for many years now, and we need to start thinking about our exit strategies, right? Um, some of us are coming in and out, but there are some that are there for very long periods of time.

AA: From what you say, the new Judy Heumann is emerging, whether she’s in Mexico or wherever she is, sounds as though the movement is generating the people it needs to lead it in the next generation. Just really want to thank all three of you for your wonderful contributions, honest contributions. I really have valued this conversation. Thanks so much.

PTF: Thank you, Akwe.

CD; Thank you. Thank you.

AV: Thank you, Akwe.

AA: I was joined in the studio by Catalina Devandas, executive director of the Disability Rights Fund, Alberto Vasquez, Disability rights advocate and co-director of the Center for Inclusive Policy, and Peter Torres Fremlin, writer and publisher of the Disability Debrief newsletter. Details on our website,, and you’ll find a full transcript there.

AA: No Coda this time, so that brings episode 35 of Strength&Solidarity to a close… Thanks for listening… Just one more episode before we complete season four and then we’ll be taking a break so we can record some new material for season 5. If you have a suggestion for someone you think we should interview, by all means let us know – write to For now, though, from producer Peter Coccoma and me Akwe Amosu, see you next time.