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Are mental health problems a ‘disability’?

We chat with Professor Tom Shakespeare about the relationship between concepts of disability and mental health.

Tom is Professor of Disability Research at London School of Hygiene and Tropical Medicine. He has taught and researched at the universities of Sunderland, Leeds, Newcastle and East Anglia, worked for the World Health Organisation, and authored several books including ‘Sexual Politics of Disability’, ‘Disability Rights and Wrongs’ and ‘Disability – the Basics’.

Follow us on Twitter and more at https://www.bio.link/livelyminds

Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find our more about the show and get signposting to support on our website anyamedia.net/livelyminds

Episode Transcript

E: Hello, if anything comes up in today’s show that you need help with right away, signposting

to support can be found on our website, anyamedia.net/LivelyMinds

 

E: My name is Will

 

E: And my name is Ellie

 

W: You are listening to Lively Minds, the podcast about mental health challenges that go beyond

the ebb and flow of the everyday.

 

E: The podcast that is less about how we deal with our mental health and more about how

we understand it in the first place

 

W: In today’s show we will be chatting to Professor Tom Shakespeare about the relationship between concepts of disability and mental health. 

 

E: Tom is Professor of Disability Research at London School of Hygiene and Tropical Medicine. He’s taught and researched at the universities of Sunderland, Leeds, Newcastle and East Anglia, worked for the World Health Organisation and authored several books including Sexual Politics of Disability, Disability Rights and Wrongs and Disability the Basics.

 

[music]

 

W: Welcome to the show Tom, good to have you here.

 

T: Thank you, it’s great to be with you.

 

W: To begin with, um can we just explore what disability actually is?  The organisation I co-founded delivers disability and neurodivergence awareness raising workshops. And the first thing we say about disability is that how we define it depends on what model of disability we use and that everyone uses a model or mixture of models of disability to do so even if they aren’t aware that they’re doing it. Do you agree with that?

 

T: I think so. I think that the way we think about it, the way we define it is very important. And I should agree with you because I spent really my entire academic career arguing about it. So, um I think that we have a sort of dominant medicalised view of a whole range of impairments and illnesses where we think that medics are the ones to understand it and to maybe respond to it um and er it is maybe genetic differences or metabolic differences or some other physiological differences which are important. And er, about, I don’t know, where are we now, 2023, about 50 um, years ago, let’s say, a bunch of people challenged that and said, look, that’s not enough and we must understand disability, um, mental health um er, as being very much structured and influenced by the society in which we live. That it can be more or less a problem depending on how welcoming, how inclusive the society that we live is. And that’s really important and it seems very simple, seems very obvious um, but it was a tremendous change, in way it turned it on its head. And so what you would, I’m sure in your training or a lot of research talk about medical model was replaced by the social model in about 1976. And I will say that the social model is part of a family of social approaches to disability. And in fact, I personally think that because it was very dominated by um er activists who had physical impairments, um it came out in a particular way. And I think it also, in my view, went too far, because I think the point about um, illness and impairment is that they are problems in themselves a lot of the time, not all of the time, but a lot of the time, we wouldn’t want to be like this, but we are. So, you know, human society, um the natural world, is very diverse. It includes people with all sorts of brains and all sorts of bodies. So that is, you know, get real, get used to it, um so if you like, the activists in the 1970s said that we are disabled by society, not by our bodies or minds. And I would say we are disabled by society and that’s what we can change, by the way, very straightforwardly. But also, a lot of the time our bodies or minds create problems and we also have to deal with that. And it’s the denial of a good way of dealing with that, which sometimes, as it were, adds to, unnecessarily adds to, the, the difficulties that we have often.

 

E: I think just for our listeners, it might be helpful if you could sort of, um, how do you currently explain the social model to someone who’s not familiar with hearing that term used?

 

T: Well, I think the social model says we’re disabled by society, not by our bodies um er, or minds. And so the social model is very much about barriers and oppression. And um, that’s what my definition of social model would be. And I think that actually um, we do live with barriers or sorts of barriers, but we also live with um, the difficulties of our bodies or brains. And those aren’t always simple. And I’m thinking of things like er pain, let’s say, dealing with pain or dealing with um depression or dealing with, um er you know, meltdowns which are triggered often by the external world. All of these are hard to negotiate. They don’t make us second-class citizens. They don’t make us unworthy or or, or thick or or wrong, but they are burdens or difficulties in certain contexts. 

 

W: And so essentially then it’s not about an either/or is it? It’s not saying it has to be that we interpret our disability, our mental health problems or our other health issues through the medical model of disability entirely, or we have to do it through the social model of disability entirely. It’s actually about using a mixture of those two models and indeed potent, potentially other models as well. Would that be fair? 

 

T: Yeah, I think it is fair. I think that it depends, I mean it’s so variable, that’s the thing about disability, it’s so variable. Not only are we, I mean, a different gender, different ethnicity, different age, some of us have had our impairments from birth, some of us have acquired our impairments or illnesses, all of those factors, but also we have different things that go on in our lives. We might have neurodivergence, we might have mental health issues, er we might have physical health issues, er physical disability. And therefore, when we think about Tom or Ellie or Will, we’re thinking about a whole er er er collection of factors. And it also depends where you live, and it depends what class you are, and all the rest of it. So it’s not simple.

 

W: So could you explore a little bit more about how these concepts of disability apply more specifically to mental health?

 

T: Well, I said, I chose my words carefully. In the 1970s, when the social model was devised, er there were very few people with mental health conditions involved. And so it, it, developed, the social model developed in Britain, from the perspective of maybe wheelchair users or blind people or folk that had physical impairments. And they said, look, society doesn’t accommodate this sort of impairment therefore er, if society changes we’ll be fine. Um, our difference will not be significant and I suppose um, when you start adding a lot of different things to the mix but mental health we’re talking about, when you start adding mental illness to the mix you might have to reconsider. Um, for example, you’ll remember that back in the day there was an organisation called the Disability Rights Commission and it was, you know, set up by the Tories but made more powerful by Labour and it’s very much about people who are discriminated against. And there’s a particular person I remember, I won’t mention him by name, and he said he had a very severe depression and he said this is the only organisation which I could work for because you understand me, you understand what it’s like and you’re not going to sack me. And the reason was that because he had er, severe depression he had to take periods of time when he just couldn’t work. So he’d say look can’t work for a while um, whatever the word is, er, um, not feeling very well, a lot of distress or whatever it might be and he would go out for a couple of months and then he’d come back and when he was there he was a fantastic worker er, but he was not always there. I can give another example, um, on Monday I had a meeting and I expected a colleague to turn up to that meeting and they didn’t turn up um, and that’s because they have bipolar condition and they were in hospital, they were not very well and later her husband rang me up and said I’m sorry, X will not er, be able to take part at the moment because she’s in hospital and I think that, and I might personally have you know some sort of impairment flare up, you know I’m sitting here talking to you, but I also I experienced pain and and, and have been bed bound for weeks, so I was meant to go to see an exhibition today and I said I’m very sorry I’m gonna lie in bed instead, so it happens to us all but I think mental health mental illness is particularly unpredictable and I believe, because I haven’t personally experienced it, at its worst is debilitating and it’s very difficult to participate in society um, with. So when we, I want to work with and have friends who have mental illness, but I need to accommodate them and the reasonable accommodation if you like, the barrier free world that I want for them is one in which they’re able to take time out and they’re able to say I cannot do this at the moment and ask me again in a couple of months or whatever it might be um, because people are like that, people have all sorts of things. Now the social model I don’t think, I think it can accommodate it but in its first version it certainly I don’t think did accommodate it. 

 

E: That’s really interesting because as you were saying that I was just thinking I’ve been involved quite a bit with an organisation called the ISPS, the International Society for Alternative and Social Approaches to Psychosis. And actually within the mental health activist world, when we talk about, the social model isn’t talked about very often, and when it is, it’s used as almost a misnomer for social approaches to mental health, rather than speaking about the actual model of disability and understanding. So I’ve just realised, as you’re saying that, that it’s used slightly

differently. Um, 

 

T: Yeah, 

 

E: and it’s kind of, I think within the sort of mental health activist world, it’s more that the medical model provides the wrong medical care. And that’s the focus of the activism and that there’s an alternative way of understanding mental health and what it is called the social approach or alternative approach that, what could affect, that introducing that into our kind of system and healthcare system is how we can affect that change. But yeah, that is different to the way we talk about and the way that the social model of disability is employed. 

 

T: Yeah, but I mean, yeah, I don’t know as much about this as you two, but it seems to me that there’s also a powerful sort of anti-psychiatry movement within mental illness, and it says, we’re just like everybody else, there’s nothing different about us at all, that if you took away the barriers, we’d be absolutely like everybody else. And I want to say no, you wouldn’t. Yeah, because most people don’t have um, psychosis or depression or whatever, or OCD or whatever it might be. Those are not, I think those are not caused by society. They might be made worse by society. They are definitely made worse by the way people are treated but, um, just as my achondroplasia was not caused by society, um therefore in the same way other illnesses and payments in my view, are not, are made worse and should be accommodated but have an existence that is not, not separate from, because everything is interconnected but not caused by. 

 

E: So I think the anti-psychiatry movement, I’m not sure if it’s focused on we’d be the same as everyone else, I think it’s definitely come from a point of, the criticism is of the medical or the psychiatric world’s need to pathologise every kind of aspect of an individual’s human experience. So like you said, yes, not everyone else will experience psychosis, that’s with inverted commas, whatever you choose for that to mean. But their, that kind of perspective is that actually anyone could experience something much like psychosis in their lives, and it’s sort of about understanding that. And same thing with depression and anxiety because once they’re pathologised and labelled and then shoved over to the medical box they’re then not kind of looked at, interpreted or treated or cared for from a community or any other kind of social perspective because it’s been put aside to just a sort of internal medical pathology basically. 

 

T: Yeah. Yeah I would certainly agree as I understand it in the sense that all of these conditions affect all of our lives and cannot be left to to medicine. I think medicine adds a very important role 

 

E: Yeah.

 

T: but I don’t think that they can be owned by medicine if you like. 

 

E: Yeah. 

 

W: One of the things that I sometimes say in this training that I mentioned at the beginning of the show is that I sometimes ask myself if I identify as disabled as somebody with long-term mental health problems and my answer to that is well it depends on what model of disability you’re asking me to use to define disability because, you know, using the social model of disability, I would say, I don’t think I am disabled, because, linking into what you were saying earlier, Tom, about people’s circum, the whole sort of the holistic nature of people’s circumstances. I, you know, I’m very autonomous. I run my own organisation. I manage my own diary. I’m my own boss, um, I have a lot of autonomy. Er, and I, I can imagine, however, somebody who is in a different circumstance to me, er, but who experiences exactly the same challenges as me mental health wise could find themselves disabled to the social model if they had less favourable circumstances, life circumstances. Do I identify with the medical model? Probably more so. I still don’t identify, I don’t think as disabled. But if, insofar as I might, it would probably be more likely to the medical model because I take medication, which for for me has been, I came to it very late in my mental health journey, sorry to use that word journey in a figurative context, but there it is. And it’s been transformational. I mean, it hasn’t, it’s not a silver bullet, as I say, but it has been significantly transformational. And my OCD, which is one of my issues, is is, very much now no longer an issue. But yeah, so so I think that, yeah, that’s where I, that’s kind of where I sit, I guess, in terms of own personal take on it. 

 

T: But you’ve introduced something different there Will, because you’ve talked about identifying as disabled. I would say, I can’t let this go, there is, there is um um a subjective and objective. So subjectively, you may identify this, you might identify that, your subjective identification is really very variable, it is completely up to you in your context. But objectively, objectively, I think we can make a distinction and it,  we might say, look, you have a sort of condition objectively which could be seen as an, as an impairment or illness and therefore within the disability box. And so because, for example, I mentioned the Disability Rights Commission a few minutes ago and when they did research they found that 50% of people did not identify as disabled even though objectively they were. And so, and if you think about older people, many of whom have a lot of impairments, they don’t identify as disabled, they just say this is natural, this is old. So there is an objective identification and a subjective identification. And people might say, look, I’m old, I’m not really disabled. They might be from a different country and a different culture where they don’t single out disabled people.  So although I would say they’re disabled because they come within my categorisation, um they subjectively would not identify disabled. So you’re saying, I think, Will, is that subjectively you’re not sure, but objectively, really, you should be in that ballpark.

 

W: If you say so, Tom, if you say so, I’m there.

 

T: I think. I don’t want to speak for you. It’s up to you. And also, it might change. I remember in Newcastle, right at the start of the Disability Action Northeast. And I remember talking about the social model with a bunch of disabled people. And I swear to you that after that half hour, you’ve experienced it because you do all this training. Um, after that half hour they sat up straighter because I’d said to them about the social model, that it wasn’t their problem, it was a social problem, and they were disabled by society, not their bodies, etc. and they felt better. They felt immediately, “I know”, you know “who I am,” because subjectively they identified with the disability movement, with the, everything else we talked about. So I do think that makes a difference.

 

E: Now for a quick break. 

 

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E: One of the reasons your research has been important and interesting to me is because, I remember, because I had the same reaction to that group you talked about however many years ago it was when I first heard about the social model of disability and I remember my eyes widening and being like, “Oh my gosh, this is amazing!” And then it was a few years after that a friend had said to me, yeah, but the social model can’t work because at the end of the social model, if we achieve removing all of the barriers put in place by society, the social model says there’s no such thing as disability. And then what do you do about your pain? And your leg not working, you know, all of that stuff that you’ve just said about. So I wondered if you, especially for our listeners as well, like what kind of, what’s the next step? What’s the, do you have a better model in mind? What could be next?

 

Oh, well, I mean, hmmm, it’s difficult, isn’t it? And I don’t have, I wish I could click my fingers and say, you want to go this and then all your problems are solved. But I think we want a sort of interactive approach, don’t we? Where we take account of our minds and bodies, the bits that are difficult for us, but we also place a lot of emphasis on our society, on our culture, on our politics, on our, you know, simple facts eof the environment and so forth which maee life difficult. Like you said Ellie, it was transformative for you to realise that a lot of the issues you face were not to do with you, they were to do with the particular place you live for example. I think that is really important and it’s powerful but I want a model that says look your experience is a product of your different mind and body AND the society interacting. And I’m using my fingers to somehow show this interaction. And it’s very difficult to pull out. For example, I, I use this example in my book and it’s a real example. And I think about a lady with MS who’s depressed. Why is she down? Is she down? because she’s got MS and it’s pretty horrible to have a disease in our society. Is she down because MS, you know which might end in death, is itself a er, not very nice disease. Is she down because MS causes mental health issues which it does, or is she down because her cat has died? Now what sense does it make, I put it to you, to try and disentangle these, because her feeling at any particular time, it’s a whole mixture of these. Hopefully, you know, it won’t always be about the, the cat, but er you know, it will be a mixture of other things. And I think that we always want something very straightforward, very, if you like, cut and dry. We want to be able to say this is to do with our society, this is to do with our impairment and divide them up and be very clear. But I don’t think in our ordinary lives it is and in a way this is why I’m moving my hands around and making it schmodel because we have all the, we have all these, I’m using my fingers like arrows, we have all these factors environment, impairment, feelings all of these intervene to produce us, to produce Ellie, Tom, Will and your listeners and it’s very difficult we could, we know what we can do to make it better for example, you know, this a mental illness podcast, you can train not just doctors, but er um nurses and psychologists and er occupational therapists and social workers and er care workers, you can train them to realise that people are not alien because they are ill or disabled. They’re not different, they are like everybody else. I remember when I did, I was I taught medical students at US East Anglia at Norwich Medical School and I did a course called Working with Disabled People and every week I got a couple of disabled people to come and talk to the medical students and these were people with aphasia, they’re people with learning difficulties, they’re people with, who are deaf, who use sign language, and they were also people with serious mental illness, and um, er, I remember a young guy who had personality disorder came to talk, and also an older guy, my sort of age, who had bipolar type 2, um and they talked, and they talked for short of an hour, and that was, I tell you, it was heavy. It was, it was like their life, and it was not always easy, and one had been in trouble with the law and all sorts of things. Um, and at the end of the session, one of the medical students, young, enthusiastic, idealistic, came up and I overheard her talk to one of my guests and they said, “Before I came to this session, I thought people with mental illness were, were alien and now I know you are people just like me.” And I just thought that moment, I’ve done it. I’ve actually achieved what I want, which is that people are treated like, you know, whether they’re doctors or not, whether they’re mental illness or not, whether they’ve impairments or not, they are human beings. And that’s the fundamental that we need to accept.

 

W: I’d like to just go back to what you’ve made as a distinction between the subjective and the objective view of disability and how on the one hand you’ve got the disabled identity and on the other hand you’ve got the more kind of objective – you’re disabled because you have these impairments etc. For me the disabled identity aspect of that has within it a kind of a social justice element or sort of, a kind of a, sort of an activist element to it because it’s a lens through which we understand our experiences we therefore kind of use that as a mechanism through which to then hopefully change things for the better. Whereas the, either having impairment or not, feels a little more, I don’t know, static to me. Can you speak to that for a while? I don’t know if I made any sense to that question. 

 

T: Yeah, that’s fine. Yeah, I can, I can, I can, I can. So, I think. So, there’s a guy called Ian Hacking, and he died recently, but he’s a tremendously good philosopher. And Ian Hacking, he wrote all sorts of books including “The Social Construction of What” and he, he, it’s a lovely book, anyway he wrote a paper called Making Up People and he said basically a lot of movements, a lot of shifts in society create a new possibility and the, and the disability movement and the mental illness movement, mental survival movement have created new possibilities that didn’t exist before. In the past there was only, I don’t know, I suppose there was the idea of being possessed, of being witchcraft, er a, a spell had been placed on you, but all those medical ideas, those are the sort of historical ways of thinking about it. But with the development of the disability movement in the 70s and the survivors movement in the 80s and 90s, um, suddenly there’s a new possibility. Um, and it’s just that word, survivor.

 

So, I know not everybody likes that word, but it became survivors, perch, survivors, whatever. It became a thing and you could put your hand out and say, “Yes, I’m a survivor. I don’t want to identify as a person with depression or schizophrenia or whatever else. I want to be me. I’m a, I’m a member of the social movement.”

 

Similarly, disability activists said, “I am under the social model, I am disabled, I am a member of the disability movement. And that’s why I’m putting out my hand in a fist, because that’s, that’s why it was political. That’s why you’ve got thousands of people. And I think, Will, that’s why you say it’s a social justice approach. Because by voluntarily take you on that label, if you like, you’re making it into a badge. And you know, everybody knows the difference between labels and badges. Labels tend to be things that are put on people by other people and badges tend to be things you wear yourself. You choose to wear that. Um,  and if you think back, you know, the Christian Cross, you know, the cross, crucifixion is a torture, it’s a terrible way of dying. But the Christians have made it, we are Christians, we are cross, we are positive, um, that’s what we believe. And in the same, well, not in the same way, but in a different way, disability rights er, people and survivors and er, er, other people have reclaimed these words. Um it’s like that word recovery. Recovery can mean having no symptoms or it can mean living a life where you’re in control, where you have your own er, er, hopes and fears and dreams and all the rest of it, which everybody wants. 

 

And so it’s a process of reclaiming, I think you’re absolutely right, it’s a process, it is a social justice approach. And it’s, but I think it, I don’t think it means objective isn’t right. I think it means that we’re going to look at it this way. As you say, we’re going to take on this lens. Um we’re not necessarily going to worry about objective ideas. We’re going to say no that is what counts that, that’s who we are and of course if you look at different disabled people in well, in history for that matter, many of them didn’t identify as disabled, now we out them, we’d say they were disabled like for example there’s a Mexican restaurant just down the road which we’re going to sometimes called Frida’s why is it called Frida it’s called Frida because Frida Kahlo and for me Frida Kahlo is a great disabled icon but I I don’t think she ever thought of that. She just thought of herself as it were, objectively as disabled, but not subjectively. She thought of herself as a woman, as indigenous, as an artist, as, all the rest of it. But she didn’t think, actually, I’m a disabled woman. And I think the fact that that is now possible, you know tremendous strength to a lot of people. And as you say, it’s a human rights approach. It’s like saying we are equal to everybody else, regardless. 

 

E: That’s because those groups have needed change historically. And so all of it, as with all sort of civil rights and human rights movements, a massive part of it has been the democratisation of those voices. Um, so people will have had those ideas over the last hundreds of years about how they understood themselves and not agree. But it’s only when, I don’t know, when you’d put it down to protest or whatever, but where there’s been enough of those people together to have their voices listened to and that’s how we’ve kind of affected change. But, it’s just another part of, like what you said, there’s so much that feeds into what is going on and how things are understood and how change can actually happen. 

 

T: But yeah, and I think if somebody had those ideas in the 18th century or the 19th century, they would have been on their own. They would have been. And what’s different, and that’s what Ian Hacking was saying with this idea of Making Up People. Suddenly, there is something they can be. And if you thought, here’s a comparison um, er, gay male identity was basically invented in about 1818 with the Oscar Wilde trial and all the rest of it. And it’s not to say that people weren’t gay before, they had same sex activity all through history. But suddenly being gay was a thing. Being homosexual, if you like, in those days was a thing, was a person, was a species. And suddenly people realised, no, they have these feelings they could be like this, they could be different and then you have, you know, obviously wave after wave of gay culture from that era to ours. But it’s not said that people weren’t gay before but they didn’t think of themselves in this way and in the same way disabled people may have thought of themselves as, as, as human rights bearing subjects or equal or whatever it might be before but now suddenly there’s a movement. 

 

E: And so from your perspective as someone whose life work has been to study exactly what we’ve been talking about, all of the different models and you know you said about this interconnected, well interactive future model, for want of a better word that we could hopefully move towards, where do you think the sort of mental health community would or should maybe fit into that interactive experience?

 

T: Well, I mean, [sigh] I take your point entirely. In my view would be that, human beings are diverse and human beings have all sorts of different sorts of minds and bodies um, and that mental illness is just one of the sort of diversity, you talked about neurodiversity. So we can talk about autism or we can talk about ADHD or we can talk about Tourette’s or whatever. Um, but whether it’s spinal cord injury, whether it’s spina bifida, whether it’s blindness, whether it’s schizophrenia, whether it’s depression, you know, human beings, you know, they are different in all those sorts of ways. There’s very few people er, on this planet who don’t have one of these differences. And what we need to do is to hear the, well, firstly, is to hear the voices. You, I, I said, and you quoted me saying, it’s my life’s work to try and understand this. And as soon as you said that, I thought, well, it is and it isn’t. My life’s work is to hear the voices of disabled people and people with mental health conditions, because that’s what’s missing. We don’t hear what it’s like. We don’t hear people defining their experience for themselves. And all, I’m a social researcher. And in a way, my research is going and finding people and listening to them. And at the moment, I’m listening to people with dementia. And yeah, you can think about dementia, is a mental health condition in a way. Nobody’s pretending it doesn’t exist. What they are saying is that people with dementia deserve and demand human rights, and deserve and demand to be treated equally. They’re still human beings. They’re like everybody else. They’re more like everybody else than they’re different. And it’s the same for every type of diversity. It’s the same about profound mental illness, which I was talking about last weekend, um, people are still human and I believe strongly that’s the most important thing. 

 

[music]

 

E: Thank you so much Tom for such a fascinating conversation.

 

W: Thanks everybody else for listening and please do tune in again in two weeks for another episode of Lively Minds, the mental health podcast. 

 

E: Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find sign posting to support on our website www.anyamedia.net/LivelyMinds

 

W: Make sure you keep up to date with our shows by subscribing wherever you get your podcasts.

 

E: Take care and bye for now. 

 

W: Bye bye.

 

[music]

 

Lively Minds is an Anya Media //// Still Ill OK co-production

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