This is the latest interview in our Beyond the Ivory Tower series, a conversation between Diana Popescu and Tom Shakespeare. Tom Shakespeare (CBE, FBA) is a Professor of Disability Research at the London School of Hygiene and Tropical Medicine. He was trained in social and political sciences at Cambridge University but his work combines disability studies with sociology, social policy, and sexuality studies. His books include The Sexual Politics of Disability (1996); Disability Rights and Wrongs (2006; 2014); Disability – the Basics (2017). He was a member of Arts Council, England (2003-2008), a technical officer at the World Health Organisation where he co-edited the World Report on Disability (2008-2013), and a member of the Nuffield Council on Bioethics (2013-2019). He is currently chair of Light for the World – UK, and vice-chair of Light for the World International.
DP: One aspect of your work that sets it apart from that of other political theorists is your reliance on sociology, psychology, social policy, sexuality studies, as well as your own lived experience for drawing sophisticated theoretical distinctions. What do you think are the strengths and weaknesses of interdisciplinarity and or relying on lived experience for advancing theoretical arguments?
TS: First of all, let’s talk about interdisciplinarity. A philosopher I was personally fond of and very influenced by is Mary Midgley. She talked about the social world being, as she used to phrase it, ‘one aquarium, many windows’. I think you can translate that as ontological holism – epistemological pluralism. I think we’re all looking at the same thing. And we may have a different perspective, a different methodology, even a different language, but hopefully, it’s the same aquarium, it’s the same social world, in our case, that we’re studying. So I don’t think it’s incompatible at all. I’m a sociologist by training, and so for me learning to think philosophically was an important part of my development. And particularly, as I compared or engaged with disability research, I was able to use philosophical argumentation, to hold it to account and to say: well hang on, that’s inconsistent.
The philosopher I probably most admire, apart from Mary Midgely is Bernard Williams. And he was very interested in the subjective and personal lived experience. What I derive from that is both the suspicion of systems that seek to organise everything, but also a realisation that we should pay attention to what people say about their lives. And as a sociologist I’m very interested in that, I want to hear what people have to say. And when what people have to say about their lives differs from what, say, disability studies or anything else suggests they should say, then I think that so much the worse for disability studies. We need to be aware of what people say. I supervise clinical psychology doctorates, where I encountered the psychological side of sociology. And I think the two overlap or are contiguous. There are sociologists who want to talk about states or about capitalism or whatever, but I’m much more interested in talking about individuals interacting with each other. And so I find a lot in common with psychologists. So, that’s a big part of what I do. It’s about who is saying what about their lives that is very relevant. And I’ve tried to do is to be very applied, as we’ve identified already, I want research to make a difference. I know that not everybody is involved in that enterprise and I have great respect for metaethics or other theorists, but I want my work to be more practical.
And finally, empirical. As mentioned before, we need to find out how it is, what people say, and what they experience. We need to have some data to flesh out the consequences. And I think, for example, that’s what Bernard Williams did so well, in terms of him saying, how do people actually live? How do they actually think? And maybe say, in his case, utilitarianism is not a very good explanation of what it is to live a life and what you what you have to take into account if you like.
DP: Thank you for an amazingly complex answer. Good to know that some of your main inspirations come from philosophy.
TS: Yeah, very much. I’m not a trained philosopher, let’s be clear about that. And often I have to show my work to somebody and say ‘Well, this is what I want to say, does this hold up?’ Or
‘How can I make this argument better?’ And then somebody like my good friend Jo Wolff in his book Disadvantage goes and interviews people. Well, how dare he, you know? I think we’re all trying to understand the world and people and how they interact with each other, and on it goes. We’re all in same boat.
DP: In your work you criticise the highly popular social model of disability. Yet in your various collaborations, you must have written and worked with advocates of that model that you criticize. How significant were theoretical differences when approaching empirical issues and when trying to work together with people you have some theoretical disagreement with?
TS: Well, it’s a small world and a friendly one, the world of academia. I think I was lucky in that I started doing my PhD and my MPhil in 1989. And I’d been thinking about disability for some time before that. And so the magnum opus of the social model, Michael Oliver’s The Politics of Disablement came out in 1990. So I’ve already started thinking about it. So for me, the question was not so much ‘Oh, this is new!’ but ‘How does this compare to what I think?’ And that’s where I entered into it, not immediately, but increasingly as critiquing it. I was a disability activist, so I’d go along and speak and protest and add my weight, such as it is, to social movements. But I also thought it was very important to say one can be very committed to disability equality, but disagree this way is the right way to solve all the problems. Some people in the wider disability movement have met me and said, ‘Oh, you’re okay, you’re not a terrible person’. They had obviously been told ‘Oh you don’t want to work with Tom’. And yet, obviously, hopefully, I am not like that. So, yeah, it was sometimes difficult to work with other people due to theoretical disagreements. And what hoped I was doing was pointing out problems that we need to resolve. And I was on-side, I was not an enemy of this approach.
I remember speaking with Mike Oliver once in a meeting, and he loved labour movement songs. And there’s this American song, ‘If I had a hammer’. It’s a very labour movement, socialist song. And he says ‘the social model of disability is the hammer, it is the tool.’ And this was a gift to me because I came after him. And there’s an English proverb that ‘if you give a person a hammer, all they see is nails.’ And I think the social model is very good, but it doesn’t solve all the problems, and therefore you need to either expand it or to say ‘Well, it’s good as far as it goes.’ But to understand the rest of somebody’s life, you need other tools.
DP: This brings us straight into the third question. In a recent article, you described yourself as an activist turned bioethicists and you talk about some divergences you have with activists who want to fall under a banner rather than look at the arguments where it leads. So, I would like to ask you first, what do you think about the relation between activism and theorising is in disability studies? And is it fair to say Disability Studies emerged from activism?
TS: I think, yes. In my own work, and I think also Mike Oliver uses this concept, there is this notion by Antonio Gramsci of the organic intellectual. And I think a lot of the activists were themselves intellectuals, and came up with a lot of theories. So the social model for example, although Mike popularised it, came from an activist group called UPIAS – Union of the Physically Impaired Against Segregation. So this is where this notion of Gramscian organic intellectuals applies, because they weren’t academics. And I think that’s very exciting.
Now more recently, about 20 years ago or so, I was introduced by my friend Jackie to the work of Jonathan Haidt, a very famous moral psychologist. In his most recent work he’s quite conservative, but in his early work, he wrote this really good paper called ‘The emotional dog and its rational tail’, in moral psychology. And he argues that we think we are like a judge in a British trial, assessing evidence, and letting it guide our overall thinking. But he says, ‘No, we’re not. We’re like barristers, and you pay your barrister, and then they find the arguments to prove that you’re innocent, or you’re guilty, or whatever the case may be.’ Barristers, I’m not saying for a moment they’re not doing their very best, but they’re doing their best for an argument. Whereas a judge is dispassionate (although they obviously attend to certain values). And I think that an academic should be more like a judge. And I think an activist is often more like a barrister.
I remember once with a very dear friend of mine, now dead, who was a disability activist, and he was brilliant. He was a wheelchair user, he had a degenerative condition. And we were complaining about wheelchairs, about pain and about whatever. And then we went on stage and he said ‘the social model explains all, all our oppression, and is the answer to all our problems’. And when we came offstage, I said, ‘Well, hang on a minute. That’s not what you were saying to me before. You were moaning about all the problems of your impairment’. He said, ‘Yeah, but I’m not going to tell them that’. And I think that that’s a problem. I think we should be consistent. And I remember at a disability studies conference, I met with a dear colleague, and I said, what paper are you giving? And they said, my paper is entitled ‘Why organisations controlled by disabled people are better than organisations not controlled by disabled people.’ And I said, ‘Are they?’ And he said, ‘Well, of course!’ I asked ‘How do you know?’ If you start with that hypothesis, then it’s very difficult to find the contrary. And it might be that in a certain sector, organisations controlled by disabled people are better. And if so, then we want to know how and why. Obviously, ideologically or politically, I think it’s good for disabled people to control organisations. But I don’t want to assume that therefore they are better, I want evidence. And I think that’s what an academic does, we are less likely to judge like a motivated participant.
DP: Building on that, what are the main tensions you see between ethical research and an activism?
TS: I think tensions are not so much in political philosophy, but in bioethics and moral philosophy. The two areas where I’ve had most clashes are about prenatal diagnosis, and about assisted dying. In prenatal diagnosis there are lots of debates in general, but also disability critiques. I benefited from spending time with geneticists and with obstetricians and really understanding what was going on. And I support women’s rights choose, I am not anti-abortion. And I thought, well, if we support that, then we cannot say ‘You should not choose on this ground, and you are only allowed to choose on that ground.’ And I think I was able to prove to my own satisfaction that actually, your decision whether to continue a pregnancy affected by a genetic or developmental disability was connected to your decision about whether to end a pregnancy at all. You couldn’t separate the two, in my opinion. What you could do is attend to the social context, the information, the bias or otherwise of the health professional, and you can support women. But I didn’t think it was my place to start saying ‘This is right and this is wrong.’ And lots of disability activists disagree. Some of them are against abortion generally. And some of them say they are pro choice, but not this choice. And I think that’s problematic.
Similarly with assisted dying, I think that certainly at the end of life, if a person is so disabled by their impairment, and they’re going to die, then I don’t agree that they shouldn’t have control over that. And therefore I support assisted dying. We talk about independent living, we should also talk about independent dying, in my opinion. That is very unpopular with many, but not by all means all disabled people. Certainly disabled activists tend to dislike that, and worry about that. But I think it depends on what comparison you make. If you make a comparison with the American states of Washington, and Oregon, and Montana, and others who have granted autonomy for assisted dying, they haven’t changed their criteria, and they haven’t expanded them. They’ve all been to do with where death is reasonably foreseen, with people who are in the end stage of life. The ones that have expanded the criteria – Canada, Belgium, Netherlands – have done so predicated on suffering. Irredeemable, suffering, suffering, which cannot be relieved. And I think the trouble is that opens you up to all sorts of other areas of life, which is very difficult.
In Canada, the initial law was about end of life, death reasonably foreseen. And I actually was an expert witness in a court case, in Quebec, about exactly this case, on whether it should be extended from death reasonably foreseen to all disabled people. And we lost, the government lost. And in my opinion, this is why in Canada it’s available for everybody, why you have these problems about people who don’t have access to services deciding to end their lives, which is exactly the problem. And I said, in my evidence, ‘Look, this is a test case for whether we can draw this line.’ And in Canada, we couldn’t. But I think that in Oregon and Washington and Montana and California and so forth it has been drawn, because there it is connected with death reasonably foreseen, when people are in the end stage. But many disabled people will attack me on that. And I’m not saying they’re wrong. They firmly hold a genuine belief and they dislike what I say, and fair enough. But I don’t just take an opinion, I have reason for this belief.
And I’m open to being changed to being shown I’m wrong. So for example, one area in bioethics is about stem cell research. And I had an initial reaction ‘This must be wrong.’ And then I thought, ‘Well, hang on, that’s not consistent, because I support a woman’s right to choose, I support abortion, and these embryos are up to 12-14 days. And this is way earlier than they would be if they were subjected to say termination of pregnancy. And therefore I am not being consistent, I have to change my view.’ And I do change my view. I think that as an academic, that’s what you should do, you should be willing to change your mind and to hear other evidence and other arguments for things that we don’t want. And that is harder for an activist to do.
DP: This brings us straight into the next question, which is about the importance of evidence for changing one’s mind. How has your own theoretical outlook been influenced by your work, particularly with government bodies, and international organisations like the World Health Organisation? Especially now that you are connected to a global context where you might have your views challenged by seeing first-hand the global dimensions of disability policy? Have you changed your mind?
TS: I have, I have. So if you look at my work before 2008, it was almost all UK. That’s where I did my work, that’s where I did my thinking. And then I moved to the WHO, because they liked what I’ve said and thought about disability, and I helped edit the World Report on Disability. The WHO exists for the 7 or more billion people in the world, so when you’re talking about the 1 billion disabled people in the world, four fifths live in developing countries. You have to think, ‘What are they bothered about?’ And they’re bothered about access to health, access to education, access to employment, and so forth. So the concerns that I’d talked about and published about in the years before I went to WHO were less relevant. Prenatal diagnosis is relevant of course for rich people, and in India with sex selection, but it’s not globally relevant in the same way.
And similarly assisted dying. Most people don’t live as long as they do in the West. I’ve got spinal cord injury, I’ll probably live to 70 or 80. But in Sierra Leone, I’d be dead in two years. So it’s basic health care. And in the West, we spend a lot of time criticising the healthcare provided. In the Global South, we might say we want more health care, or we want disabled people to have an opportunity to work or whatever. So it does change what your priorities are.
Every now and then I get invited to speak about prenatal diagnosis, and it’s a kind of ‘Oh yes I remember this, I used to talk about this.’ I’m not trivialising it, it is a very important issue, but it’s not available to everybody, and it’s not a priority for everybody. So it seems to me that I should be trying to research what are priorities for everybody. So for example, at this very moment, I’m working with a colleague in Uganda on a poverty valuation scheme. We’re trying to find out, through a process of valuation and impact evaluation, whether it is equally good for disabled people as non-disabled people. So in a way, it’s a practical question. It’s not an interesting theoretical question, but it’s a really important question because if this intervention is not good for disabled people, we want to know why, we want to change it, and/or we want to do something else that is good. All of this influences the questions you ask.
And the other aspect is that there’s this sketch by Finkelstein about different stages of development. He argues that a lot of the problems of disability occur with industrial capitalism. And of course, many African countries are heavily agrarian. You do have, increasingly, mega-cities, but at least half the population, sometimes three quarters, live in a rural farming situation. And therefore it’s very interesting to study the disability and development gap, which asks ‘Can you have more wage labour, more urbanism, more capitalist production if you like, and still have disabled people included?’ That’s a great challenge, and I don’t think we’ve solved it. That’s what my colleague Nora Groce is very interested in. And I think in a way the current state of much of the world emulates pre-capitalist Europe. We need to think about ‘OK, let’s try and avoid some of those problems’
DP: The final question is about the reverse direction: What do you consider to be your biggest success in terms of introducing ethical debates, arguments and distinctions into disability policy?
TS: I think emphasis on empirical work and listening to disabled people is really important. To take just one example, organisations of people with disabilities are felt by many to be the answer. But I’ve said to my colleagues when I went to work at the London School of Hygiene and Tropical Medicine: ‘OK, what percentage of disabled people are in organisations?’ And the percentage is 10 percent or less. So are they really the solution? Of course they are a solution and they’re all we have, but they’re not speaking for everybody and we need to go out and do research with everybody. So I think listening to disabled people is of great emphasis.
Secondly, I’m proud of the number of disabled people who are in academia because of me, because they were my PhD students. I won’t embarrass them by mentioning them, but I think it’s very important. For example, I have a PhD student with dyslexia who was excellent, he’s a Professor now. He did his PhD with me and a colleague, and we found other ways, such as listening instead of reading, to enable him to be an academic. And others I could mention. I am very proud of that. And in the current programme, funded by the Foreign Office, we have 10 disabled persons from low and midddle income countries doing PhDs. And they might not all succeed, but most will. And I think a) it’s good for them on a personal basis, but b) it’s really good for researching disability. What we’re saying is not that no good work was happening before, but that there were very few disabled people in academia. There are so many barriers. You can say it’s the same for women or other minority people in academia, but we need more disabled people. So I am very proud of that.
And I hope that what I said about the social model shows that you can be a good academic, a good disability and equality enthusiast, but still think there are better way to understand disability. I hope that is now established. And I hope the fact that I’ve said that and not been assassinated means that other people could say that. And just say ‘Look, there are other ways, why don’t we have real pluralism?’ We can all disagree at that point, and they may well disagree with me, as long as people are free to work it out for themselves and are accurate with their data. That’s the main thing. So those are the things that I feel proud out.
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