Language of Rights Episode 26July 19, 2022

26. Disability rights: How ‘nothing about us without us’ powered a global treaty

Hosted by Akwe Amosu
Produced by Peter Coccoma

Relative to other marginalised people, the disability community had to wait a long time for their rights to be globally asserted.  But the adoption, 15 years ago, of the Convention on the Rights of Persons with Disabilities (CRPD) marked a major step forward, from the language of charity and medical strategies to the language of rights. Now widely ratified, the Convention has had a remarkable effect: expanding protections and bringing together people from different corners of the disability movement to shift deeply entrenched assumptions about agency and capability. In a period when many have questioned whether investing in standard-setting is worthwhile – often arguing instead for a radical disruption of institutional approaches – the human rights framework seems successfully to have given agency to a community that badly needed it. Alberto Vasquez is a Peruvian lawyer with a history of activism around psychosocial disabilities in his own country and in the Latin American region, and for him, the question was not whether a Convention would prove worthwhile, but how the process of achieving it might build power for those whose rights were being abused. He reflects on both the solidarity and vibrant activism that emerged, and that even those under guardianship or coercion by mental health authorities are seeing the possibility of change.

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The Interview

The CRPD was a revolution – for equal protections and for our community

It wasn’t just the 2006 passage of the Convention on the Rights of Persons with Disabilities that changed the paradigm for the disability community: it was the unifying power of discussing, drafting and imagining their way into a world that afforded new protections and more equal power. In Alberto’s Latin America region, the CRPD seeded the roots of a strong regional network that has continued to advocate and abolish barriers at the local level.


Hello and welcome to Strength and Solidarity.

I’m Akwe Amosu…with episode 26 of our podcast about the tools, tactics and strategies being used by human rights activists around the world… And this time –  a global treaty that has changed the world in just 15 years.

It’s not unusual to encounter doubt among rights activists about the value of multilateral processes – prolonged negotiations in the corridors of international organizations to secure an international treaty or statute.  An outcome might look good on paper, they say but, in practice, does any government really take compliance seriously? Some take the critique even further, arguing that UN bodies, run by international civil servants with a bias towards compromise, are likely to be poor guardians of human rights. For the skeptics, the very language of human rights has lost its power, and we need to be talking about a struggle for social justice advanced by activism, rather than through treaties and statutes.  But in at least one key area of the human rights field, that narrative doesn’t really hold water. For activists in the disabilities space, the Convention on the Rights of Persons with Disabilities adopted 15 years ago was a game changer, disrupting centuries old patterns of abuse. Alberto Vasquez is a Peruvian lawyer and activist who has made the disability field his central concern. Originally in his home country where he became president of Sociedad y Discapacidad – or SoDis, and helped found a regional network in Latin America to advance the rights of persons with psychosocial disabilities. Now based in Geneva, he is a senior advisor at the Center for Inclusive Policy and engaged across a wide range of disability issues. So I thought he would be a good person to talk about why and how an international agreement has proven such a powerful tool to advance rights.


Akwe Amosu: So welcome Alberto.

Alberto Vasquez: Well thank you for inviting me here.

AA: When we were together a few weeks ago at one of the sessions of the Symposium, you said something that was very interesting to me. We were talking about the language of rights, and some people in the group were saying that language felt no longer fit for their purpose. That their purpose, their activism, their mobilization was feeling constrained by a rathe formal and restrictive definition of human rights. But you said, you didn’t think that was true for people who were in the disability rights community. I wanted to hear from you why that’s so –

AV: I have the impression that the disability community came late to the discussions about rights. The international human rights framework was not inclusive of people with disabilities until very recently. So we have a new international treaty 15 years ago which has been widely ratified, but before that, treaty bodies actually hardly worked on the rights of persons with disabilities and human rights movements were not particularly inclusive of persons with disabilities neither. So we had a gap. And I think crossing that line in terms of being recognized in the human rights framework really revitalized the disability movement. And in many countries, it has been actually the starting point of a very vibrant, active disability movement advocating for rights. And this is very linked also with the paradigm shift we experience, from charity and a medical model to a language of rights, from relying on non-profit organizations and relying on charity for demanding our own rights, and not just the right to health, not just the right to rehabilitation, but all human rights for all people with disabilities. And this was a very powerful statement that we had, particularly since the Convention on the Rights of Persons with Disabilities, and the Convention really opened many doors in terms of funding, in terms of capacity building, in terms of political opportunities to achieve change at country level. So you see that in 15 years, we have achieved things we didn’t think we will achieve. Some countries have ended guardianship. Some countries are for the first time considering ending coercion in mental health systems. So we have done a lot in a short time. And I think all of these came with this promise of human rights of persons with disabilities.

AA: Is it something to do with the document itself, or is it something to do with what was unleashed or released by the process of producing the document?

AV: For sure, the document has a symbolic and powerful meaning, but the document wouldn’t exist without the process. Organizations with persons with disabilities were highly involved in the drafting of the Convention on the Rights of Persons with Disabilities, and not only from rich countries – the global south had a meaningful participation in many of the sessions of the negotiation. This has been the most participatory convention ever. And the whole mode of the negotiation was ‘nothing about us without us.’ And that has been the motto of the disability movement for a long time. So, yes, it was very important for the disability community achieving this milestone. And since then, this milestone is opening other doors. For example, the, the millennial development goals were not inclusive of people with disabilities. The Sustainable Development Goals have specific indicators and targets and – with all the limitations that the framework has, still it’s inclusive of persons with disability. So I think it’s true that we have a lot to gain still engaging in this international process, but also at local level using the language of rights.

For many of us in the global south, those new aspects of social justice, intersectionality, participation for us are already embedded in the language of rights, because that’s how we, we adopt them. When we talk about disability rights for us, it comes with all of that. It comes with a very strong package of substantive equality. Because of the involvement of people from the Global South – the active participation of persons with disabilities, we don’t have this impression that this is a colonial process, imposing us a set of standards, which we adopt as, as the way of living and the way of doing things. It doesn’t mean that we don’t have sometimes difficult areas that some people in the disability community may feel well, we actually don’t have an agreement on that.

AA: So let’s go there. What comes to mind when you say that?

AV: Well I think in some contexts, the idea of “independent living” in the community was misunderstood. Because I think “independent living” was a concept that came from developed countries, and had this component of moving away from institutions. And for many of the Global South, that’s not a reality. First, we don’t have institutions because the state never actually invested, not even in the wrong way in the disability community. But the second aspect of that is, I think there has been a misunderstanding that independence means living alone and cutting ties with your family and being completely autonomous. I think when we look back at the content of the debate, of course there is this influence of the “independent living” movement from the Global North, but also this idea of interdependence, which doesn’t leave out the importance for many of us, of our families, our communities and living in the community. That created some tensions, but I think to some extent, transformed too, into something bigger, which is about living in the community with equal choices as everybody else. And then another one was inclusive education, no? Inclusive education, meaning that, okay, we want to make the education system inclusive, but what does it mean for all the groups? And how inequalities could arise from that, from that concept, no? And you have the deaf community challenging, in some countries, the idea of, well, we want schools for the deaf. We want schools that are segregated. Why? Because we want to maintain our culture, we want to interact with our peers. So I would say there is still a lot of space for, for debating what inclusion means and what inclusive education means.

AA: Can we go back to what you were saying a few minutes ago about guardianship and conservatorship? And, if you like, the elements of the experience of living with disabilities that really focuses attention on power, where power sits. You said that in some places the CRPD has helped to maybe rebalance, I don’t know how far you would go – has helped to change the equation. Can you say a little bit more about that?

AV: So one of the ultimate barriers to the exercise of rights has been, for many people with disabilities, the denial of legal capacity, the denial of the right to make legally binding decisions. And many persons with intellectual and psychosocial disabilities are generally put into systems of guardianship, of conservatorship, depending on the legal system, which at the end means they are denied of making decisions by themselves. And I would say 90 precent now, or more of the countries in the world have a similar system. And Article 12 of the Convention on the Rights of Persons with Disabilities really started a revolution – it’s the first instrument that recognize that people with disabilities should enjoy legal capacity on equal basis with others. And you had a lot of reservations and interpretation from the state saying, well we cannot achieve that; we can reduce and redefine the way guardianship and conservatorship work so only those that need to be there, will be there. And I think that’s kind of the debate we have now with Britney Spears – people saying she shouldn’t be there, but other people, should be under that system; but the Convention is actually quite clear –  it’s on an equal basis with others. So then this has prompted change and advocacy. But it’s beyond that, because it means also how do we ensure support for people to exercise their legal capacity? So new systems are being developed in different countries to support people for making decisions for exercising the legal capacity. And for me, I think it’s highly gratifying that this is coming for countries in Latin America particularly, where you have countries like Argentina and Brazil that has done partial reforms. And then Costa Rica, Peru, Columbia has done full reforms, and this is really inspiring reforms now in, in other regions. And I think when the negotiation was adopted, Article 12 on legal capacity was the last one to be negotiated with high resistance from countries. And today, fifteen years later, we’re actually seeing change, concrete change that this is giving back people the right to vote. It’s giving back the right to decide over their own bodies. And because people are not familiar with the level of discrimination and harmful practice that people live, this means, for some people ending electroconvulsive therapy. This means ending sterilization. And this mean being for the first time able to run for a public office. So it’s a significant change in the life of many people.

AA: You’ve mentioned the resistance from governments. Is this change, as it were, full, or has power been taken back somewhere else in the system, by the state or by government to limit the impact of this change?

AV: Well, it had a lot of resistance. You have, I would say two big sectors resisting this particular change from legal capacity. One of them is civil law lawyers afraid of dismantling hundreds of years of work that just disappears with one legal document. And the other one is mental health systems and psychiatry in particular because we’re taking away also the power to decide over people. And of course there are more stakeholders that have their own concerns – families, about what is going to happen, when decisions are made and we don’t agree? Or could have an impact, in the family, and this is a larger debate about, what’s the role, for example, of mental health services? It’s just providing support to people? Or it’s for social control? And there is where we’re seeing more resistance and the resistance is coming particularly for high-income countries.

AA: So I think that’s exactly, what I’m trying to ask about – has the adoption of this set of principles actually generated a kind of backlash? Are you seeing more demands at the state level or at official bureaucratic level for certification for limitation of the impact?

AV: For sure there has been a backlash, particularly from people in the mental health sector. You see it from academic publications. You see it for advocacy for stricter risk assessments at country level. To some extent it’s cheaper for countries to recognize freedoms, rather than investing in the support needed to exercise those freedoms, which is very important in the context of disability because many people with disabilities won’t be able to vote, for example, if they don’t have the support to go to voting. You need investment in services that will help people to exercise their legal capacity. So I think to some extent, countries that are moving forward with this agenda are those that are willing to grant more space for freedom, but without investing on what comes with it. And I think that’s what is happening in Latin America. Countries taking the risk of recognizing a broader space for human rights, but at the same time, I think consciously knowing that they don’t have the capacity or the willingness to invest in what it means, but this is opening the door for better advocacy to achieve that no? But other countries that are more concerned of, okay, ‘how do we protect society from these people that now have the capacity to decide over their lives?’ I think those countries are more reluctant to advance the agenda. And the last line is always mental health services. And in mental health services, the last line is coercion. The states want to reserve the possibility to access coercion against those that the system deem as danger to themselves or to others.

AA: That opens a question that I’m curious about on this specific point, but even more generally, which is about the impact on solidarity, particularly within the disability community, if that’s a thing, if one can talk about it that way- There’s enormous diversity in that community, it just makes me wonder how far people in the community, see it as a collective task, for example, to defend people with, mental disabilities –

AV: So the disability community is very heterogeneous. But the negotiation of the Convention was a great opportunity, at least at international level, for different groups to connect. So the advocacy, through the disability caucus also aim to represent this diversity in the disability community. And it was achieved through solidarity, through solidarity that all the groups will defend their agendas and the demands of the different groups during the negotiation, because some articles may be more relevant for other groups. For example, Article, 12 on legal capacity was particularly relevant for those groups actually with less power – people with intellectual disability and people with psychosocial disabilities. But still, that was a key aspect of the negotiation and the solidarity across groups help to build that. After the Convention, those different groups that already have representation on the international level, organized something that we call the International Disability Alliance, which represents different impairment groups at international level, but also organizations with persons with disabilities at regional level. So this is one of the body that came out of it that aim to provide some platform for a change and solidarity.

AA: You talked about the psychosocial disability space as being more difficult- Maybe say something about what that has meant to maintaining and building solidarity, because I think even people who feel enormous sympathy, will find themselves at least feeling doubt about some of the demands, the radicality of some of the ideas that are coming out of the psychosocial disability community.

AV: Yes. I think the psychosocial disability community has a struggle to engage in these broader progressive advances that we have made on disability rights. One of them is the issue of identity. Not everyone sees themselves as persons with disabilities. People that is part of the psychosocial diversity community. Some people identify as ‘users of mental health services’, ‘people with lived experience’. Some people will have more radical identities as ‘mad persons’ or ‘survivors of psychiatry’. And I think that diversity already in a specific group, it complicates the way we relate with the broader disability community. But also, as you said, the radicality of some of the changes that we need, I wouldn’t say of the demand, but of the real needs that we have in the community – it makes things more complicated. Legal capacity was already difficult enough – and that was something that was pushed for by persons with psychosocial disabilities during the negotiation very strongly –  but now going to the next step, which is, okay, we want to end coercion in mental health systems and in the community in general against persons with psychosocial disabilities, well, that creates broader resistance and that actually interacts with their own fears and prejudices  sometimes in the disability community. So I think it has been quite difficult to navigate those things. The medical model that the disability community abandoned is still very prevalent for persons with psychosocial disabilities. It’s very hard to do advocacy that is not framed through mental health lens. It’s very difficult that when people talk about your rights,  (they) think we need to ensure access to mental health services and quality support, but nobody’s talking about my right to employment, my right to education. So it’s very hard to move away from that. The mental health system works as a gatekeeper. If I want to access a social benefit, I actually have to go to see a psychiatrist that will say that I have a disability and depending on the country, he may say, actually, this person doesn’t take medication; he may need to be assessed to see if he has the capacity to decide not to take medication. Um, so you have a system ready to take away your rights.

AA: And would it be true to say that that medical profession is, in the majority of cases, on the side of more control and retaining that power? Or do you have allies who are willing to relinquish that control?

AV: I think we’re building that, and again, this is not monolithic. You have people in the movement not willing to engage anymore with mental health professionals, and you have people in the movement, more willing to engage with them in a strategic way and from a platform of mutual respect. And I think in recent years, for example, the World Health Organization that has been very conservative for a long time now is actually more supportive of implementing the paradigm shift that the Convention on the Rights of Persons with Disability has brought, and embracing some of the discourses that we has been raising for decades.

AA: Before we end, I just wonder what your reflections are on the impact of the pandemic on this particular space we’re talking about, because at least I as a completely non-professional observer have the impression that attitudes to mental health have changed quite significantly in many places. That what used to be pretty heavily stigmatized is somehow coming out into the light in a way that I hadn’t seen before. Is that just on the lifestyle pages of the media, or is there something really changing?

AV: I think something is changing… I think the pandemic actually came when we already have significant efforts at international level, with high profile people disclosing their mental health experiences. So having the pandemic and [have it] affecting us in different ways – through grief, but also through the restrictions we face over the last two years.  For sure it’s creating more awareness about mental health.  For many of us in the disability community, the problem is that raising the profile of mental health is going to come with more resources, but to be provided in the same way that this is done today. And this means a very medicalized approach and people sometimes don’t see that. But the number of people taking medication has increased significantly, particularly in children. I’m not against medication, but I don’t think people realize how much there is an agenda built around medication and the long lasting impact that could have in people. And sometimes medication is the first response because there is no risk; because it cheaper than doing talk therapy; because it have fast effects. And the system what it wants is people to be productive and keep contributing. And how much also that helps to invisibilize the social determinants of mental health. You look at the symptom, you don’t look at the problem behind. Actually sometimes systems don’t even ask what happened to you, it’s ‘what I need to do to stop what you’re feeling today.’  So that’s one problem. But the second problem for many of us is, some people, particularly those deemed more severe – people with psychosis or bipolar disorder- actually face significant amount of coercion. And when you mix this with the criminal justice systems, this is actually not improving our situation. It’s actually making it worse. We’re just going to have more money going into the system because of the higher awareness of mental health. That means that many, many more people will end locked in facilities, being drugged against their will, and lose the rights in the community. So that’s our concern, but, but I see the point of someone going through a mental health experience, as I did, needing help and feeling, ‘this is great’. We’re talking about that. Uh, finally, there is less stigma.

AA: So, I mean, I’m taking away so many valuable things from this conversation, but one of them,  I think, is perhaps a good place for us to close, which is, yes, there’s enormous power in the Convention, in what it has been able to do, so don’t trash these formal processes. But the need for a radical, questioning response from within a community; the need for solidarity with those who continue to need to be protected from power illegitimately used, doesn’t go away. And so it’s critical, in a sense, to hold the benefits of both approaches in balance, that you’re working through a professional and formal system, but you’re maintaining the radical value of struggle as you do so.

AV: And then, if I can add something there, I think we need to be more critical in the strategies that we use to advance the disability agenda because the agenda is advancing, to some extent, because it’s seen as non-controversial. Unless of course, if I bring the mental health component, it’s controversial again. But if I take away the mental health component, it’s not controversial. And I think there is some temptation sometimes to take the easy road: ‘let’s avoid talking about race, let’s avoid talking about gender, let’s avoid talking about conflicting issues’, and take the role of human rights and we can add development there we can get more cooperation on that. And I think, it’s a two-way road. I think the human rights movement needs to have more openness to the concerns of the disability community. more understanding of how grave and systemic their violations are. I think sometimes there is the idea the problem is accessibility, and that’s it. When these very complex problems, what we’re experiencing is about integrity, is about freedom, is about torture. But then – the other side –  I think we shouldn’t forget that what we’re harvesting today is thanks to the language of rights. And that comes with very core principles that we need to embrace.

AA: Thank you Alberto

AV: The same to you for this opportunity to talk.


And that’s it for episode 26 of Strength and Solidarity, and indeed that’s it for our third season.  We’re going to take a break and get some new material together for when we come back in October.  For now I want to give huge thanks to our brilliant program manager Cate Brown, and to our similarly brilliant producer Peter Coccoma – I could not wish for better partners. But above all, we’re grateful to you, our audience for listening. You are the reason we do this, of course, and we hope you’re finding it worthwhile. So from me, Akwe Amosu, thank you – and see you in the fall…