Carers and human rights: the parallel struggles of disabled people and carers for equal treatment

Key Question Being Explored in This Insight:

Luke Clements considers the struggle being waged by unpaid carers (sometimesreferred to as ‘caregivers’) for recognition as ‘rights holders’. It locates the originsand describes the growth of the ‘carers movement’ and argues that it has manysimilarities with the Disabled People’s movement that came to prominencein the 1970’s

View the page of: Luke Clements

Institution: University of Leeds

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Evolution of Human Rights for Carers

00:00:00 - I suppose I'm a lawyer and I have been very involved in human rights litigation for various disadvantaged groups, and through sort, sort of serendipity, I ended up, being asked to write some legislation for carers, got involved in carers, and I saw the similarities between that sort of embryonic carers movement, 15, 20 years ago, and the other movements that had happened in the second half of the last century.
00:00:32 - Well, it varies throughout the world. looking at the UK in, in the law is in in good shape. the UK has been seen as a leader in, most countries when they're talking about developing their carers legislation, particularly in Europe, but in the US and sort of the Anglo-Saxon world and to a degree in, in Asian countries. They look to the uk. The UK has for just historical
00:01:05 - of drafting that legislation. So it's very good show. When I wrote this paper, 2010 on years ago, I think in, in, in many practitioners mind, there was, a memory of a early BBC program called Does He Take Sugar? and that was in 1977 initially, and it was at a time when disabled people were
00:01:37 - compliant cripple people in wheelchairs. And the legislation talked about cripples and handicap people, into sort of, in a way human rights activists. and so it had this very provocative title of Does he take sugar because it, you, you talked about 'em, you didn't talk to them because they were incoherent, incapacitated people, but they weren't, they were becoming, human rights champions effectively. And they were saying, we have rights the same, you know,
00:02:09 - and, and sexual groups. and that was building on, the civil rights movement, particularly in the US and so on. And they, they have, in my opinion, all of these, disadvantaged groups have what I would call a constitutional moment. Very often those moments come out of, massive unhi, upheavals war or, or something similar.
00:02:40 - that they needed really three issues. They needed to, as a group identified. so they needed to be identified by the state, but also to self-identify. They needed to have a narrative of oppression that, that they had been treated disadvantage. And finally they needed a creed that could crystallize, those two factors into a campaign.

Legal Challenges and Advocacy for Disability Rights

00:03:08 - for long been adversely treated by the law. They had trouble, I think, forming a group identity, but the law had treated them in a, for very many years. And in terms of lunatic legislation and, dispossessing them of the right to make decisions on certain issues, they had a strong narrative of oppression because of the law was framed in negative terms. And for them, the constitutional moment was the social model of disability.
00:03:43 - handicapped because they lacked the ability to walk. They were handicapped because somebody put the polling station at the top of a flight of stairs and they couldn't vote, not for any innate reason. It was an external form of oppression. and that came at a, at a crucial junction history. I think the Vietnam War is the sort of motive there, a lot of highly educated, scripted people going to Vietnam,
00:04:15 - and then building a campaign. So in, in 19 77, 78, 98, you were, this was becoming, concrete. And we were then being, you know, there was big arguments. They should add disabled people to the list of prohibited characteristics and discrimination. So we had the race, discrimination legislation in the sixties and seventies
00:04:46 - legislation in the seventies, sex discrimination legislation. It seemed very difficult to argue that disability should be a characteristic, because of course, there are lots of things to say, well, people certainly can't do because of their impairments, which isn't really true with sex or race. So it was a big pushback. People were very skeptical. But of course, in the Americans with Disability, acts comes along in 1990 and fairly shortly
00:05:16 - of other countries following suit. In the uk we had the Disability Discrimination Act in 95. and in a way, the rest is history. In 2006, you get a UN declaration, a UN convention, the rights of persons with disabilities. So I was arguing that, the similar constitutional moment was coming for carers. It wasn't just he take sugar, its does your carer take sugar? But in fact, they had the, the raw ingredients for
00:05:48 - And well, the Creed for Disabled People was, the classic, argument of Michael Oliver, the social model of disability. and his, his, the front cover of his book, the 1990 book was a disabled person in a wheelchair at the bottom of a flight of stairs. And at the top was a sign saying polling station. And his argument was that people are not handicapped

Reconstructing Society for Inclusive Accessibility

00:06:19 - They have handicapped by the, the idiot, basically that put a polling station at the top of a flight to sticks. And that society had been constructed for able-bodied people, and therefore needed to be, destructed in a way, or reconstructed in a way that didn't handicap disabled people. But getting rid of barriers was the problem. The physical barriers, the attitudinal barriers, the, the administrative barriers. And that was, I mean, it is a brilliant idea.
00:06:51 - but it completely turned the argument over. And people would say, look, I'm a repressed, not internally, I'm externally oppressed by the way the state is, is running thing. and the yeah, as I say, I think the rest is history on that, changed. And, we are now at a stage where it's unquestionably accepted that disabled people should be a protective status and shouldn't be the victims of discrimination
00:07:22 - which for me as a young lawyer 50 years ago, 45 years ago, seems strange, but now it's just routine. I always find it ex extraordinary. I mean, now I'm a pretty well full-time academic, and, and I get the students to look at the founding documents, the Universal Declaration on Human Rights, the International Covenant on Human Rights, the International Covenant on Social Economic Economics, the European Convention on Human Rights.
00:07:53 - no one should be treated adversely because of their sex race, national status, birth origins, and so on. But workability is not in any of those. But now we have a UN convention. And if you look at the rights protected, not to be tortured, not to be made a slave, be able to express yourself, the right to care isn't there. There's the right to care is not in any international document, but it's the most fundamental right that exists.
00:08:25 - provided with care as babies or at other stages, that, that somehow, you know, you have to sort of say, well, well, is there a right to care? And then you say, well, of course there's a right to care, because if we didn't do that, the world wouldn't exist. The human world wouldn't exist. And yet people are routinely punished for caring. They are carers, unpaid carers have some of the worst health outcomes, some of the worst financial situations,
00:08:58 - a document on extreme poverty. The Rapporteur saying it's very difficult to imagine any human right that isn't fundamentally affected by the unpaid and highly gendered caring, roles and difficulties that carers have. So, so it is ex I think it's very strange, and I think that if, if caring wasn't so gendered, it probably would've been in some of these original documents, but it was just, it's not seen there.

The Invisible Burden of Caregiving

00:09:26 - I think people will say, yeah, sure it's right. But why do we need to have that as a human? Right? Well, because people are treated adversely because of it. The thing about caring is so interesting is that it's gendered, and that's why it's largely invisible, and it's normally done behind closed doors. And there's something sort of, yeah, unusual about it, even though it's sort of ubiquitous. The argument was that there was a sort of constitutional moment coming for carers, as a group.
00:09:59 - The 1601 poor law made it a legal obligation on families to care for other family members. That obligation exists pretty well throughout the world. Even in the us the majority of states have what we call failure responsibility obligations, common law, civil law countries in Europe, Europe have that obligation. They exported that to South America.
00:10:30 - Curiously, the UK got rid of failure responsibility in 1948, when it abolished the libel, the, the poor laws. But that sort of cultural norm continues. And for very interesting sort of serendipitous re causes. The UK had a sort of movement on carers, which started in the sort of eighties
00:10:59 - the Carers Recognition Act, which was then, copied in much of, well, particularly the, the Anglo-Saxon world in Europe. so you were beginning to get legal recognition care as people that the government didn't wanna upset. There's an awful lot of them. And, their voting is probably quite important. Care has always had a problem self-identifying, as the way I think disabled people did
00:11:29 - say, I'm a disabled person. They wanted to say, look, I'm a a law lecturer, or I'm a mechanic, or I'm something like that. So getting identities always been quite a difficult problem with some oppressed groups. But you, you had this proliferation of carers organizations in the 1990s and ever since, so there was no problem about it having an identity, very much a identity entity, a narrative profession. Well, as I I've said, the statistics on carer wellbeing,
00:12:01 - women end up with half the pension pots of men in general, even in Anglo-Saxon countries, largely because of caring, not for children, but for, dependents, health-wise, over half of all carers have a caring related health condition, and so on and so on. So the adverse impact of being a carer, is profound. And the question was, what's the creed going to be?

Universal Vulnerability and Caring Rights

00:12:35 - vulnerability theory. And I, I talk about somebody I think is amazing, Martha Feynman, who argued that, you know, there's universal vulnerability. Nobody's invulnerable and just the state privileges, various groups to be more resilient than other groups. And, wealthy people, people who can go private, who can pay for their children's education, who can introduce them to colleagues and so on, networks.
00:13:05 - that it was the state's obligation, responsive state's obligation to compensate for the vulnerabilities that people had to build up their re resilience effectively and effectively. she's a feminist scholar, compensate women for the caring role that many people take on gladly, but they shouldn't be, financially punished. So I argued that there was that moment, and
00:13:38 - of the protected ga categories in discrimination, and that there was a very strong argument for caring, being recognized as a human right, for which you like expression. You shouldn't be treated a adversely because you express, you know, standard views. And that was sort of 2013. I think now on nearly everything, that I talk about, I'm normally wrong.
00:14:09 - I've made these predictions and, you know, you wind the clock forward and you think that was not right. It didn't happen that way. The unusual one about this is it sort of, even though I've changed my mind a bit about this issue, it seems that that view has proved to be not, not completely incorrect. shortly after I, I wrote the article, the un, major report on,
00:14:38 - In, we just recently had a, a really pivotal decision of the UN Convention on the Rights of Persons with Disabilities Committee in, a, a case called Bulia in Italy, where they have said that carers have rights under the Disabled People's Convention, and they found a violation in relation to a female carer. We've had, a European Court of Human Rights case against Croatia, largely a discrimination case.
00:15:12 - a talk about in, in the case, a case called Coleman Law in 2018, significantly expanded in UK law, in 2021. So indirectly, kiers are now well protected under bits of discrimination law, and indirectly their human rights are being recognized, but not directly.

Challenges in Understanding Legal Change and Care

00:15:41 - I probably changed my opinion because I, there was a risk of me being correct, and so I, I went incorrect. yeah, I have got a paper, I haven't written it, but I've analyzed all of these decisions from the point of view about what impact they've had. we as lawyers tend to see a decision and think, that's great, you know, we won the case, get some photographs, get in the newspaper, and then get on with the next case. But winning a case is the beginning, not the end
00:16:12 - and it's got to bring about sort of constitutional change. And if you look at the history of discrimination legislation, particularly, it, it's called sort of Nancy Fraser talks about it as being progressively neoliberalism. It, it, it, it talks the talk, but it still allows the government to walk the Goldman Sachs walk, basically, that it doesn't upset the economic basis. And Sabi Basti wrote an analysis of the impact
00:16:45 - and said it really hadn't changed the discrimination, the adverse position of, of black people in the US at all. so we clinging to the non-discrimination rights, and we think they're great triumphs, but they do very little to unsettle the universe of disadvantage, that we need to probably pull other knee levers. And, and Martha Thyman says that herself, but she's not really interested in protected categories.
00:17:18 - so maybe I spent too much time with Martha. She was a colleague here, and she's not the sort of person I'd like to disagree with, but actually is somebody I do like to agree with. So maybe discrimination is, is an easy win. Curiously, I know it's a big struggle, but it doesn't necessarily change the position of those protected groups to the degree that we'd like to see.
00:17:49 - the paper comes out in 2013, I think it was. I was then the expert advisor to parliament, the joint houses of the Parliament on the Care Act. And that act gives carers exactly the same rights effectively in social care in the UK as disabled people. It's the first piece of legislation in the world to do that. So carers have really become embedded within the lung, and there's very positive, as I I've said,
00:18:22 - and human rights legislation that, these things have got to be addressed. so yeah, I think the things are moving in the right direction. The problem remains, always with the law in how do you define a carer, because of course, most of us are carers one or more times in our lives, but that's not, that's not, so I think, yeah, the line

Recognizing Carers' Rights in Human Rights Law

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Carers and human rights: the parallel struggles of disabled people and carers for equal treatment

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