S1E13 – Disability and mental health, with Professor Tom Shakespeare

Please note: this episode transcript has been automatically generated and therefore will contain some errors.

 

E13_Disability_&_mental_health
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Ellie: [00:00:00] 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.

Will: My name is Will

Ellie: And my name is

Ellie.

Will: You are listening to Lively Minds, the podcast about mental health challenges, that go beyond the ebb and flow of the

everyday,

Ellie: the podcast that is less about how we deal with our mental health and more about how we understand it in the first

place.

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

Ellie: Tom is professor of Disability Research at London School of Hygiene and Tropical Medicine. He’s taught in research at the universities of Sunderland, Leeds, Newcastle

and East Anglia worked for the World Health Organization and authored several books including Sexual Politics of Disability, Disability Rights and Wrongs, and Disability, the Basics.

Welcome to the show, Tom. Good to have you here. Thank you. It’s

Tom: great to be with you. To

Will: begin with [00:01:00] can we just explore what disability actually is? The organization 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

Tom: that? 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 I think that we have a sort of dominant medicalized 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. And it is maybe genetic differences or metabolic differences or some other physiological differences which are important and [00:02:00] about, I don’t know, where are we now?

2023, about. 50 years ago, let’s say a bunch of people challenged that and said, look, that’s not enough. And we must understand disability mental health as being very much structured and influenced by the society in which we live. Then 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. But it was a tremendous change in a way. It turned, its on its head. And so what you would, I’m sure in your training or, or a lot research talk about the 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 [00:03:00] very dominated by activists who had physical impairments it came out in a particular way. And I think it also, in my view, went too far because I think that the point about illness and impairment is that they are problems in themselves a lot of the time, not all of the time.

A lot of the time we wouldn’t want to be like this, but we are so, you know, human society the natural world, it’s 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. 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 denial of a good way of dealing with that, which sometimes, as [00:04:00] it were adds to, unnecessarily adds to the the difficulties that we have often.

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

Tom: Well, I think the social model says we are disabled by society, not by our bodies or, or minds. I. And so the social model is very much about barriers and oppression.

And that’s what my definition of a social model would be. And I think that actually we do live with barriers, all sorts of barriers, but we also live with the difficulties of our bodies or brains. And those aren’t always simple. And I’m thinking of things like. Pain, let’s say dealing with pain or dealing with depression or dealing with 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 [00:05:00] or, or, or thick or, or wrong. But there are burdens or difficulties in certain contexts. And so

Will: 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, or, 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 potentially other models as well. Would that be fair?

Tom: Yeah, I think it is fair. I, I, 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, 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 we might have [00:06:00] physical health issues physical disability.

And therefore when we think about Tom or Ellie or Will, we are thinking about whole. 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 is not simple. So

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

I. Well,

Tom: I, I’d said I chose my words carefully. In the 1970s when the social model was devised 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 if society changes, we’ll be fine. Our difference will not be significant. [00:07:00] And I suppose 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.

For example, you’ll remember that back in the day there was an organization called the Disability Rights Commission. And it was, you know, set up by the Tories, but made more powerful by labor and it’s very much about people who are discriminating against. And there’s a particular person I remember, I won’t mention him by name, and he said, I.

He had a very severe depression, and he said, this is the only organization which I could work for because you understand me. You understand what it’s like, and you are not gonna sack me. And the reason was that because he had 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. Whatever the word is. Not feeling very well. A lot of distress or whatever it might be. [00:08:00] 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. But he wasn’t always there. And I can give you another example.

On Monday I had a meeting and I expected a colleague to turn up to that meeting and they didn’t turn up. And that’s because they have bipolar condition and they were obviously, they, well, they were in hospital, they were not very well. And later her husband rang me up and said, I’m sorry, X will not be able to take part at the moment ’cause 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 experience pain and, and, and, and have been in bedbound for, for weeks. 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, I believe, ’cause I [00:09:00] haven’t personally experienced it at it’s worse, is debilitating and it’s very difficult to participate in society. With, so when we, I, 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. 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.

Ellie: That’s really interesting because as you were saying that, I was just thinking, I’ve been involved quite a bit with an organization called erm, the in I S P S, the International Society for Alternative and Social Approaches to Psychosis, and actually within the mental health activist world, when we talk about.[00:10:00]

The social model isn’t talked about very often, and when it is, it’s used as an almost a misnomer for social approaches to mental health. Rather than speaking about the actual model of disability and understanding. So I’ve just realized as you’re saying that, that it’s used slightly differently. Yeah.

Yeah. 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 the, there’s an alternative way of understanding mental health and what it is called, the social approach or alternative approach, that what could affect the, 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.

Tom: Yeah, but I mean, I, y y 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 [00:11:00] says, we are 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 wanna say, no, you wouldn’t. you know because most people don’t have psychosis or depression or or whatever, or O C D or whatever it might be. Those are not cause – 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 just as my Achondroplasia was not caused by society. Therefore, you know, in the same way other illnesses, impairments in my view are not, are not, are made worse and should be accommodated, but have a existence that is.

Not, not, not separate from, ’cause everything is interconnected but not caused by, so I

Ellie: think the Anti-psychiatry movement, I’m not sure if it’s focused on, we’d be the same as everyone else, I think. But it, it’s definitely come from a point of [00:12:00] the criticism is of the medical or the psychiatric psychiatric world’s need to pathologize 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 kind of 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. ’cause once they’re pathologized and labeled 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 Yeah.

Pathology, basically. Yeah.

Tom: Yeah. I, I, I would certainly agree. And 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 [00:13:00] medicine has a very important role. Yeah. But I don’t think that they can be owned by medicine, if you like.

Will: Yeah. One of the things that I sometimes say in this training that I mentioned at the beginning of the show is that I, 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 are. You, you, you are asking me to use to decide, define disability.

Because, you know, using the social model of disability, I. I would say I’m don’t think I am disabled. Because linking into what you were saying earlier, Tom, about people’s, the whole, sort of the holistic nature of people’s circumstances. I, you know, I’m very autonomous. I I, I run my own organization. I, I, I manage my own.

Diary. I’m my own boss. I have a lot of autonomy and I, and, and I can imagine, however, somebody who is in a different circumstance to me but who experience exactly the same challenges as me mental health wise, could find themselves disabled. Through the social model, if it had less [00:14:00] favorable circumstances, life circumstances.

Do I identify the medical model? Probably more so I still don’t identify, I don’t think as disabled. But if I, in so far as I might, it would probably be more likely through the medical model because I take medication, which for me has been, I, I came to it very late in my mental health journey. Sorry to use that word, journey in figurative context, but there it is.

There it is. And And it’s been like, it’s been transformational. I mean, it hasn’t, it’s not a silver bullet, as I say, but it, but it has been significantly transformational and the, and my O C D, which is is one of my issues is, is very much now, no longer an issue. But yeah, so, so I think that, yeah, from, that’s where I, that’s, that’s kind of where I sit, I guess in terms of my own personal.

Take

Tom: on it, but you’ve introduced something different. There will, because you’ve met you’ve talked about identifying as disabled. Ah, and I would say being, you know, I can’t let this go. There. There subjective and objective. So subjectively, you may identify as [00:15:00] this, you might identify that.

You know, 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 a. 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 dis of people did not identify as disabled. 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’s an objective identification and they’re subjective identification. And people might say, look, I’m old. I’m not really disabled. They might be from a different [00:16:00] country and different culture where they don’t single out disabled people. So, Although I would say they’re disabled because they come within my categorization they subjectively would not identify as disabled.

So you, you are saying I think well, is that subjectively you’re not sure, but objectively really you should be in that. Ballpark,

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

Tom: Well, I don’t wanna speak for you. I, it’s up to you. And also might change, I remember in, in Newcastle when I, 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 training. After that half hour, they stood up. They sat up straight up because I’d said to them about the social model, about that it wasn’t their problem, it was a social problem. They were disabled by society, not their [00:17:00] bodies, et cetera.

And they felt better. They felt immediately, I know you know who I am. Because subjectively they identified, identified you know, with the disability movement with the. Everything else we’ve talked about. So I do think that makes a difference. Now

Ellie: for a quick break,

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Ellie: One of the reasons your research has been important and interesting to me is because I remem I had the same reaction to that group you talked about when I, 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 [00:18:00] 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 work?

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

Tom: next? Well, I mean, it’s difficult, isn’t it? And I don’t have, I, I wish I could click my fingers and say, you wanna go this?

And then all the problems are solved. But I think we want a sort of interactive approach, don’t we? Where we take account of minds and bodies. The bits that are difficult for us, but we also place a, a lot of emphasis on our society, on our culture, on our politics, on, you know, simple facts of the environment and so forth, which make life difficult.

Like you said, Ellie, it was transformative for you to realize that a lot of the [00:19:00] issues you faced were not to do with you. They were to do with. The particular place to live, for example. I think that is really important and it’s powerful. But I, 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 d pull out. I, I, I use this example in my book, and it’s, it’s a real example. And I think about a, 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, a, a a, not very nice disease?

Is she down because MS causes mental health issues, which it does. Or is she down [00:20:00] 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. Yeah, it won’t always be about the, the cap but it you know, they, it will be a mixture of other things.

And I think that we always want something verys, straightforward, very, if you like, cut and dried. We wanna 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 there is, and in a. This is why I’m moving my hands around and making a al because we have all the, 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 can, we know what we can do to make it better. For example, [00:21:00] you know, there’s a mental illness podcast you can train. Not just doctors, but nurses and psychologists and occupational therapists and social workers and care workers.

You can train them to realize 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 U S C Sangria at, 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 they face here. There are people with learning difficulties. There are people with who are deaf, who use sign language. And there are also people with serious mental illness. And I remember a young guy who had personality disorder came to talk.

And so an older guy, my sort of age, who had bipolar type two. And [00:22:00] they talked and they’d talk for an hour, and that was, I, 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. And at the end of the session, one of the medical students, young you know, idealistic or came up and I overheard her talk to the 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 your people just like me.

And I re 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 have impairments or not, they are human beings and that’s the fundamental that we need to accept.

Will: I had like to just go back to what you sort of made as a distinction between the subjective and the objective view of [00:23:00] 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 are disabled because you have these impairments, et cetera.

For me, the disabled identity aspect of that has. Within it a kind of a social justice element or so a kind of a, a, 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 an impairment or not feels a little more, I dunno, static to me. Can you speak to that for a while? I dunno if I made any sense

Tom: Question.

There’s a guy called Ian Hacking, and he died recently, but he is a tremendously good philosopher and Ian Hacking. He wrote all sorts of books, including the Social Construction of Watt, and he, he which is a lovely book. Anyway, he wrote a paper called Making Up People, [00:24:00] and he said basically a lot of movements, a lot of shifts in society create a new possibility.

And, and, and the disability movement and the mental illness movement, survivor movement have created new possibilities that didn’t exist before. In the past, there was only, I, I don’t know. There was, I suppose there was the idea of being possessed, of being witchcraft of spell being placed on you, but, or those medical idea.

Those are the sort of historical ways of thinking about it, but, With the development of the disability movement in the seventies and the survivors movement in the eighties and nineties suddenly there’s a new possibility. It’s just that word. Survivor, so I know not everybody likes that word, but it is, it became survivors.

Bur survivors, yeah. Whatever. It became a thing and you could put your hand up and say, yes, I’m a survivor. I don’t want to [00:25:00] identify as a person with depression or schizophrenia, whatever else I wanna be. You, me, I’m a, I’m a member of the social movement and similarly disability actor said, I am an, I am under the social model.

I am disabled. I am a member of the disability movement, and that’s why I’m putting up my hand in a fist because that’s, that’s why it was political. That’s why you got thousands of people, and, and I think will, that’s why you say it’s a social justice approach, because by voluntarily taking on that, That, that label, if you like, you are making 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. 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 crossed, we are positive. That’s what we [00:26:00] believe. And in the same, well, not in the same way, but in a different way. Disability rights people and survivors and other people have reclaimed these words.

It’s like that word recovery. Recovery can mean having those symptoms, or it can mean living a life where you’re in control. Where you have your own hopes and fears and dreams and all 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, I, but I think it, I don’t think it means objectiveism. Right. I think it means that we are gonna look at it this way. As you say, we’re gonna take on this lens. We are not necessarily gonna worry about. Objective ideas, we are gonna say no. That is what counts.

That that’s who we are. And of course, you know, if you look at different disabled people in well in history for that matter, many of them didn’t [00:27:00] 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 I go 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 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 then as indigenous, as an artist, as all 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. But that’s

Ellie: because change is those groups of needed change historically. And so all of it as with all sort of civil rights and human rights movements part, a massive part of it has been.

The democratization of those voices. So people will have had those ideas for over the last [00:28:00] hundreds of years about how they understood themselves. And it, not a great, but it’s only when, I dunno 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.

Tom: But I, yeah, and I think if somebody had those ideas in the 18th century or the 19th century, they’d have been on their own. Yeah, they would’ve been who thought like then 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 the, here’s the comparison. So Gay male identity was basically invented in about 1880 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 text activity all through history, but suddenly being gay was a thing.

Being a [00:29:00] homosexual, if you like, in those days was a thing. It was a person, was a species. And suddenly people realize, no, they, you know, they had 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 say 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

Ellie: movement. And so from your perspective as someone who’s life’s work has been to Stu 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 [00:30:00] maybe fit into that interactive experience?

Tom: Well, I mean, I, I take your point entirely. I, I, my view would be that human beings are diverse and human beings have all sorts of different sorts of minds and bodies. And that mental illness is just one of the sort of d diversities.

You talked about neurodiversity. So we could talk about autism or we could talk about A D H D or we could talk about. Tourettes or whatever. But whether it’s spinal cord injury, whether it’s spina bda, whether it’s blindness, whether it’s schizophrenia, whether it’s depression. Yeah. Human beings, you know, they are different in all these sorts of ways.

There’s very few people 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 I, as soon as you said that, I thought, well, it is and it isn’t.

My life’s worth is to hear the voices of disabled people [00:31:00] 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 the. Experience for themselves and all. I’m, 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. Mm-hmm. And 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 and 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. People are still human and I believe strongly that that’s the most important thing.

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

Will: And thanks everybody else [00:32:00] for listening, and please do tune in again in two weeks for another episode of Lively Minds the Mental Health

Ellie: Podcast. Please note that this show does not constitute medical advice and is not a replacement for seeking professional help.

You can find Signpost to support on our website and your media.net/lively minds. Make sure

Will: you keep up to date with our shows by subscribing wherever you get your

Ellie: podcasts. Take care and bye for now. Bye-bye.