Hi, You're listening to The Sociology Show, a podcast about absolutely anything to do with the wonderful world of sociology. Whether you're a teacher, a lecturer, a student, or just taking a passing interest. This podcast will look at a range of issues from social clasts, ethnicity, gender, sexuality, religion, crime, education, and anything else this sociology has to offer.
My name is Matthew Wilkin. In each episode I will speak to someone working in the field of sociology and let them explain all about their own interests, their research and their experiences. So put your ear phones in, turn the volume up, and let's be sociology gigs together. Eight. Hello, and welcome to the Sociology Show podcast. Would you like to start by telling us a little bit about who you are and what you do this. So,
my name's Tom Shakespeare. I'm Compessor of Disability at London School of Hygien's Tropical Medicine. I'm a sociologist, so obviously I've trained at Cambridge and my current role is really doing process evaluations of interventions to improve the lives of disabled people in low middle income countries. So it's a lot of disability and development research, but also I do research and UK, particularly about recently the impact of
COVID on disabled people. Great, thank you, and I had a look on your Wikipedia just as as sort of an introduction that, I mean, huge number of things that you've done throughout your time from their very long and varied career. If I do say so myself, I think I tend to get bored of things, so I tend to one to different things. I've lived in different places. I feel that all of my work is broadly about
disability. I've worked with the World Health Organization, and I think it's Yeah, it's exciting to be a sociologist because you're looking at the world around you, trying to make sense of it and trying to make it better. And in my case that's particularly in the field of disability. Thank you, Tom. And we'll start with that disability then. So the first thing I wanted to ask you, which on the on the base of it sounds like a
simple question question, but maybe it isn't. And that's how do you define what a disability is? Well, yes, you say, that was my entire PhD. What the hell is it? So? I think that there is a evolved human functioning and disability is a negative departure from that. However, um, you know, everybody has a departure from how you could be, and therefore we always need to look at both disability and context. So
what are you expecting people to do in our society at this time? And also to look at yeah, to look at cultural values behind what is the disability and what is not. For example, yeah, if I lacked the lowest digit of my hand, that wouldn't really be a disability to somebody who is working in academia. But if I was a concert pianist, there'd be a huge disability. I couldn't be a concert pianist. In a case of a comedian Dave Allen, he literally lacked the knuckle of his left hand.
He made a joke out of it. He was a comedian to matter at all, but in other areas it might have mattered. And so it shows that what we think of as the disability is very cultural, very very defined by your context. And for example, there's a lot of attention at the moment to neurodiversity, and we realize that many people are neurodivergent, and of course you know that mental difference may manifest in different ways. There may be
among people who may millions on struggling exchange or for their business. Or it may be people who are turned to a life of crime and end up in prison, but are very rule breaking and risk taking in their criminal career. As it were, so our cultural values say, really, whether disabilities positive
or negative? A lot of the time, are you kind of drifting slightly into what we call the social and the medical models there then in terms of the disability being socially constructed, if you like, yes, and am not surprisingly because that's what I know us about. And what happened was that historically disabled people would defined as people with things wrong with them. They had the death set of mind, body, They explained their social situation. And if
you like, this is a case of biological reductionism. And when I say it like that, immediately our hackles go up. We get they worried because of course, you know, slavery, a gender subordination, a pressure of lesbian, gay people, all of it was justified on the basis of biological
difference. You know, it's not that we are nasty people. It's merely that they deserve to be subordinate to the master race or whatever it might be, and therefore we should look very carefully at disability and how much is depending on what we expect people to be and on our narrow range of acceptability and the way that we construct our environments. For example, I went to a college which had never had women before I arrived, and when I arrived,
I arrived with a cohort women too. And this college was founded in thirteen forty seven, and one thing it didn't have was women's toilets, and of course women you know generally, they're not unisex toilets, so that there had to be installed far more women's toilets. Now that is a classic case of because it had not been part of the of the academic institution, it was not part of the architectural landscape. And the same as the case with disabled
people. I use a wheelchair, So when I can't get into a building, is that because it doesn't have accessibility or is it because I don't have walking as one of my abilities? Now, yeah, you know all about medical social models. I'm glad of that, But what I want to say is that whereas disability is socially created, there are lots of Like I gave the example of the building lots of examples of that. There is all so an intrinsic biological element. So what I want to do is to balance the
biological and the social, and the cultural and psychological for that matter. And I want to say they all go into the makeup of what it takes what it is to be disabled. And I don't want us to, as it were, forget that we have bodies and that they don't always work as we want them to. With that in mind, then how do you Because there's obviously subcategories of disability. So what are those subcategories that we tend to talk
about within disability? Well, we might think about physical impairments, and obviously I was born with the physical impairment. We might think of mental health conditions, and then we're into a whole area of both common and mental disorders as they are called I wouldn't use that term disorder, but like depression or anxiety, whatever, and then more serious mental illness like schizophrenia, bipolar condition, or personality disorder, which are much more a life long if you like.
We also talk about learning difficulties, which again come in a range from you know, obviously you know about dancer or so forth, but this idea is very instant that we have an average idea of our hundred and learning disability defined as two standard deviations be low average, and that counts as learningly disabled. And so of course lots of people in society have learning disability of no obvious
cause, and they may be captured within that. But you can immediately see how our notions of average, how our notions to standard deviation, and they're the ways that we define this, but there's contingent. They are what we decide to define, and of course we live I'm taking this slide of of the Trinity Dublin long rum. Look at all these books. We live in
a knowledge economy, and of course that immediately disables people. We're learning difficulties who can't read or can't retain information, so fitz flip, mental impairment, mental illness, learning difficulties. We also have, obviously, the whole railm of sensory conditions like deafness and bliness, deaflineness, and again we might say, well, is it that somebody's death or is it that we don't know sign language who we can't converse with a deaf person In the same way,
there's a famous book by my friend Noura Gross. Well, everyone here spoke signed, which is about Martha's Vineyard, which was said is an island of Massachusetts. And because it was settled in the pilgrim Father's days by people who had a hereditary form of deafness, they were not the jority, but there
were a substantial minority, and so everybody used Sia language. And what Laura found when she interviewed old folks from that community was they couldn't really remember who was definitely who wasn't because everybody used side language, and therefore being death was not so much for disability. And then I would also add chronic health conditions. So a lot of these are invisible, so there might be MSS or
dabets or epilepsy. Now, what's quite interesting about all of these conditions, but particularly chronic health conditions, is that we have an objective idea that these people or those people have something which makes them disabled. But subjectively they may not think of themselves that are disabled at all. And of course half all disabled people over the age of sixty and older people obviously often don't define this disabled at all. They may have functional deficits, but they say, well,
this is just normal aging. This is natural. So and indeed, when the former Disability Rights Commission did research, they found that fifty percent of people who had rights under the Disability Discrimination Act, which is what we used to have before the Equality Act, fifty percent of people who were covered by that act didn't think of themselves as disabled at all. And therefore they changed
their strap line. Instead of saying, where you know, I can't remember what it was, but we support the rights and disabled people, they said, we support the rights of people who are covered by the Disaposity of Discrimination Act or something like that. So you didn't have to define us disabled subjectively before you were covered by that projection. Interesting it is. Yeah. One of the questions a student put to me, and I struggled to answer it,
so I thought, I put it to you. Is that they asked about that does it need to have Does the impairment need to have some sort of permanence? So, for example, if you were in a car accident, you broke your leg, okay, and you're in a cast or even in a wheelchair, but you know you will return back at some point, does that count as a disability? Well, according to the Convention of the
Rights of the persons with disabilities. No, because that convention passed by the UN in two thousand and six defines the disability in terms of long term right. Having said that, somebody who is temporarily in a wheelchair or a splint or whatever, or has some other impairment finds out what it's like pretty quick. They find out that the world is not designed for people who are different,
that's one thing. And they may start being seen as dependent, they might start being seen as capable, and so they again they get some sense to the stigma involved in disability and the way that people are treated. However, as you say, they're not long term disabled. So they get out of it and then hopefully their views are changed. They are more inclusive and less likely to define people as incapable merely because they can't do a thing.
And what I can't remember that I've I've talked about this before in lectures. I probably have. But we can think about a group of people who don't care their own money, live in safregot accommodation, don't go to normal schools, are stared at wherever they go, and this would sound like a very sigmatize negative experience, but it would also count as a description of the British royal family. So clearly, clearly there is a difference between physical dependency flight
and social pendency. You can be physically very dependent on the people and socially very independent, so you can be very powerful in fact, and in fact in the historical societies, the more that people had things done for them, the more powerful they were. So this is really odd in a way that the definition of power is having somebody else wipe your bottom. That's not,
you know, the gentleman of the school they were called. I believe that is not what we think of. We think of people being very dependent. But it doesn't have to be like that, and therefore we should try and as it were, a change those social relations to give people more respect, whether or not they need other people to do things with them more for the more to make their lives better. The Sociology Show podcast relies on the kind
contributions of sponsorship and donations. If you enjoy the show, then you can help with the hosting costs by donating as little as five pounds on the go fund me page. Simply visit UK dot GoFundMe dot com and search for the Sociology Show If you can donate, then you will be sent to Sociology showpen as a small thank you for your continued support of the show. You mentioned the word stigma. One of the questions I wanted to put to you was
about representations in the media. I just wondered where you thought we were at the moment. There's arguments to say that things have got much better, much improved, but there's also arguments to say that often representations are still very stereotyped and still quite basic. I was interested to put that question too, where you thought we were at the moment. With that, I think you're right.
I think disability have improved massively over my lifetime. I just had my fot seventh birthday, and when I do a lectures about disability to lay audiences or student audiences or whatever, I have to obviously check my examples, not just because they're all old and people that understand them, but also because there have been improvements. So but you know, it takes a lot of time
to change attitudes. When I was young, gay people, gay men were seen as being effeminine and camp and you know, and figure it's fun. And now absolutely there is total I think total acceptance total inclusion and good arrange of good images. So gay people from me lots of different things and can
be celebrated for that. Now that change happened in over years. So as I say, in twenty or thirty years, Larry Grayson or John Inman or whatever being very camp and now it's nobody really cares and it's accepted now, not by everybody and not everywhere, but broadly. And so the change in disability representation is going to take a long time. But we see many more disabled people being actors. We see the story of the disability movement being represented
by writers like Jack Thorne or in film. And I don't know, I didn't see it, but you know this film When Barbara Met Johnny was about Barbara Lasinki and Johnny Trender. I used to I know them very well. I used to perform with them, and now they're the subject of a sort of biopic on the BBC. So it's a very odd for me who's lived through it. It's a very odd thing to see. But there are more
representations. But I also think that we have a what's the word, a body fascism that now more and more bodies have to be a certain way and how to be young and now have to be capable and would actually been so our tolerance of difference has reduced, so there is a sort of you know, disabled people are fine, but everybody is going to have to be much
more and only certain solid disabled people. A friend of mine, Yan Grewer, in Norway, did talk about or an article about representations of disability in Norwegian television, and what I found was that yeah, if you could do outward bounds, so you're physically strong, then it didn't matter if you're a wheelchair, but if you're a frail, if you had a fatigue related impairment, you are not covered. And the same you could say for wonderful representations
of the Paralympics. Yes, if you're a winner, that's fine, but a lot of disabled people couldn't possibly do those things and we want their actually their representation to be changed as well. So is there still I know there's been lots of writing about that the representations are either oversimplified or stereotyped or often patronizing. I think is the work that comes up that's still the case, you would say, I think there's a greater range. I think disabled people
are allowed to be more things. But I mean historically disabled people were, as it were, second dying tragic for brave and plucky and and and people like telling team in in in Well. I used to call it Dickens Christmas Carol. I now call it a muppet Christmas Carl. People might remember that or they were actually evil. So I'm sorry about all the Ricardists out there. But riches the third you know, written by Shakespeare's a hunchback, and
yeah, even the dogs bark in my passing. But lots of negative, physically deformed characters. James Bond villains often very physically deformed and so forth. And then thirdly, there's sort of super cript idea, and I think that like Stephen Hawking, you know, a crippled man but solving problems the universe, or a lot of stereotypes of disabled people are about this sort of super
crip idea. Now, what's wonderful now is so people are just able to be human, just able to be intersting, boring, bad, good, sexy, un sexy, the range like other human beings. And that's what that's what disabled people want. They want that range of stereotype that they don't want sunny flip from being always useless to being oh it's powerful. They want to go, yeah, I'll do it something some bad other things. You know, what day is it? So almost it shouldn't be the sensual sort
of narrative of the stories exactly exactly what we've what we want. Some of my American friends called narrative prosthesis, and what they mean is that that disabilities lack a crutch for the writers. So they go, oh, disabled he'll be struggling to come to terms, or disabled he'll be bitter and twisted, or disabled he'll have overcome his limitations and be better than anybody else. And these stereotypes, these one dimensional plot ideas, make for very shallow film and
TV. And if you think about it, these stereotypes are what we used to have with with with with black folk, an Asian folk, or gay folk. They are very limited. Yeah, it's it's like, no, that's not We're like, we're ordinary human beings and you know, we do everything you do, but we're just a little bit different. And that does not explain why we do what we do or whether we succeeded whether what we do. I probably should have asked you this right at the start on are
you happy? Because lots of students would have seen your name in a book but might not be aware of your own disability. So I've got I've got lots. So, first of all, I was born an a kind of plasia, long long word. It basically is a genetic condition. My father had it, he said, now my children have with my granddaughter had to it. So that's why my arms you know, I spreading up my arm as here, but they're not very long, and I've got a slightly different
shaped head. Um. So that's that's what I was born with. In two thousand and eight, I became paralyzed. That's partly, Well, that's largely because I have a kind of plasia. And so can you hear me? We're around and bashing around in my living room, so I use the wheel chair. I'm paralyzed, so that's an acquired impairment. And thirdly, a little while ago or a couple of years ago, during lockdown in fact, I said to my colleague, oh, I don't really understand that on
a bit of ADHD and she said, are you really? And I went, yeah, wow, I don't know um, and she said, well, should get tested, And so I went and got tested and I do. I do have ADHD. So and in a way you started this interview by saying, why have you done so many different things? Well, that is class at ADHD behavior. You get bored and you do something else, and you're not very good at sticking at things. And I think that's actually a strength as well as a weakness. I'm not you know, look at
all these books. I'm not necessarily the great scholar of who's written a hundred books, but I am the stealer breath. Field of Breath is very good. And on that point, talking about your your your different books are different writing. One of my colleagues said, you've got to asking this. I think a colleague of mine saw you talk recently and she mentioned you were writing or have written something about disability and sex and she said, you've got to
ask Tom about this. I wrote a book a long time ago with Kath Gillaspie's Elves as Sadly just Died and Dominic Davis called the Sexual Politics and Disability. And this is the first book I wrote in I think nineteen ninety six, and we did an update twenty years later. We talked to people in twenty sixteen and wrote an update myself and Sarah Richardson. So but so I am. We've just been in a big bid to look at sexual reproductive health, for to say, with people in Britain. So we're waiting on tent
hook CEO. You're putting your funny bid and sometimes they work sometimes. So we really want to explore whether disabled people get access to sexual unless the education, abortion, contraception, pregnancy disease, sexual sexual restance, diseases, all of that spreading. We want to know sexual violence. We want to know whether disabled people who included in those provisions. So yeah, I am still very instant and sex u and I hope to do more work in that area.
Fantastic. I wondered, as well as just thinking, just flipping back to the media for a moment, what your interpretation was of programs like Undatables, Love on the Spectrum and so on again. Do they fall into the patronizing, the hedge patting sort of looking down or not? How do you feel about them? I mean, obviously what one of the I would say, and I think a lot of disabled people would say, I'm datables, what a terrible, terrible title. But I actually did watch one of the
pro grams and because friend of mine soon vite voiceover. But I thought, well, actually, you know, this is quite sweet. But as soon as you find yourself going, oh, this is very sweet, as you say, you get into the cute slightly patronizing. And the question which all disabled people have asked is why aren't there disabled people on regular programs, you know, whether it's stating programs or makeover programs or grease shows or whatever else.
Why aren't they just there? Because we are part of the population. There are billion, more than a billion des sabled people in the world, and we may come about fifteen percent of the population, about one in a or more of the population. And therefore, why aren't we just there? Why aren't we contestants from time to time? Why aren't we on the apprentices
from time to time? And increasingly we are. So that's really sighting, it's really good, and so we should be and I think, yeah, this picture of of the long library and the book accows around the corner. This is Trinity College, Dublin libraries. The slide I used. Look at those statues. They're all white men, and they're all non disabled white men, And it could be anywhere in the in the normal hemisphere really, and we want to change that. We want to say we're not all white men.
We are diverse, we're different, we're men and women, and we're defined and differently with Dan straight that we define differently. We're disabled and we'n disabled and we defined differently. And I think that is how it should be. That's how it used. So let's have TV or magazines or museums that
reflect that. I just wondered if there is there a difficult balance because quite often, you know, if there is a disabled character in a program, you get some oy rolling and this is just tokenism, that sort of feeling that they're they're they're just to sort make up the quota as you like.
Yeah, yes, And I always wonder whether my career, my success and I have been quite successful, is explained by my inequalities, or because they wanted a disabled person and they thought, well, he's bright, he can taur will have him. And I think it's a mixture. Sometimes it is that he is tokenism. Having said that, even tokenism isn't complete waste of time. It's obviously you're not just seeking there silently not able to contribute.
It's honously a plea of weight as it were within the context. Then for other disabled people who come after you, for disabled kids, they can see you in public spaces, they can see you in organizations, they can see you on the television or whatever it might be, and they go, you know what, I could do that too, And it is part of moving us towards what we want, which is that nobody cares. That's what we really what I'd said earlier, that whether they're going off straight, nobody cares.
And that's exactly how it should be in terms of disability. There's what we would call reasonable combination. So let's make sure that you can get in the building, that you can use the toilet, that we take account of your of your difference, and then let's let you get on with it, and let's, you know, let a thousand flowers bloom or whatever. I'm glad to hear over your career on it sounds like that far more positives than negatives. You know, it's it's not perfect, but we are making huge
progress, I think so. I think I think there are interestinct developments, like we've had a process of welfare reforming, like in them now a lot of disabled people still depend on whether benefits and therefore that has really hit them hard, harder than always say they think COVID is hit to say, were people hard not only because many disay were people are older or have compromised immune systems and are more at risk of COVID, but also because COVID the shutdown
really negatively affective disabled people. And you can think of this, you know, you know the guide dogs, they're not able to social distance people with intellectual disability. What do they do all day? Will they go to the projects which are created and which have been all stopped during COVID so they were
stuck at home watching the telling. So you know, it shows that this society that we take for granted is contingent, constructed, and if it's taken away, it can create a huge number of barriers and difficulties for people. Thank you, Thank you, Tom. I always ask people to give up some details at the engine and an interview, so people want to find out more about your work or follow you on Twitter? Are you happy to give out some Absolutely? So. If you don't know throughout disability, read my
book Disability The Stinks because it is what it says on the packets. It's very straightforward. You should be in the library. If you really want to get the grits to it, read something like a Disability Rights and Wrongs or the Disability Reader, both of which will give you more extensive information. If you want to follow me on Twitter, it's at Tommy Shakes, so it's one who had Tommy shakes. Friend of mine used to sing Tommy shakes.
I'm not called Tommy never closing tomic Tommy shakes. And my website is called a Farmer of Thoughts dot co dot uk, So farmer of thoughts all one word dot co dot uk. And that's quotation from Tom Payne, who was a radical who believed in boxy, who believed in freedom, and he said, I want to be a farmer of thoughts and all the crops I raised I give away. And that's very much what I think a public intellectual should be about these days in any country. Well, thank you very much for
the details. Thank you very much for your time and also your sterling work throughout the years, and I think future students will continue to enjoy learning all about your research. It's a wonderful way of thinking about sociology is start with disability. That's my advice. Thank you, Thank you again for your time. By now, the Sociology Show podcast relies on the kind contributions of sponsorship
and donations. If you enjoy the show, then you can help with the hosting costs by donating as little as five pounds on the go fund me page. Simply visit UK dot GoFundMe dot com and search for the Sociology Show. If you can donate, then you will be sent to Sociology showpen as a small thank you for your continued support of the show. Thank you for taking
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