Interview with Professor Tom Shakespeare on disability

In this episode, Matthew talks to Professor Tom Shakespeare. Tom is is an English sociologist and bioethicist, he has achondroplasia and uses a wheelchair, his work focuses on all aspects of diability. In discussion, Tom defines what a disability is, how it impacts identity and changing attitudes. Tom also discusses media representation of disabilities and whether they have improved over the last twenty or so years.

You can follow Tom on Twitter @TommyShakes


and check out his website - https://farmerofthoughts.co.uk/

Episode Transcript

(00:03):
Hi, You're listening to The SociologyShow, a podcast about absolutely anything to
do with the wonderful world of sociology. Whether you're a teacher, a lecturer,
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at a range of issues from socialclasts, ethnicity, gender, sexuality,
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(00:29):
My name is Matthew Wilkin. Ineach episode I will speak to someone working
in the field of sociology and letthem explain all about their own interests,
their research and their experiences. Soput your ear phones in, turn the
volume up, and let's be sociologygigs together. Eight. Hello, and

(00:50):
welcome to the Sociology Show podcast.Would you like to start by telling us
a little bit about who you areand what you do this. So,
my name's Tom Shakespeare. I'm Compessorof Disability at London School of Hygien's Tropical
Medicine. I'm a sociologist, soobviously I've trained at Cambridge and my current
role is really doing process evaluations ofinterventions to improve the lives of disabled people

(01:15):
in low middle income countries. Soit'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 sortof an introduction that, I mean,
huge number of things that you've donethroughout your time from their very long and

(01:38):
varied career. If I do sayso myself, I think I tend to
get bored of things, so Itend to one to different things. I've
lived in different places. I feelthat all of my work is broadly about
disability. I've worked with the WorldHealth Organization, and I think it's Yeah,

(02:00):
it's exciting to be a sociologist becauseyou're looking at the world around you,
trying to make sense of it andtrying to make it better. And
in my case that's particularly in thefield of disability. Thank you, Tom.
And we'll start with that disability then. So the first thing I wanted
to ask you, which on theon the base of it sounds like a
simple question question, but maybe itisn't. And that's how do you define

(02:22):
what a disability is? Well,yes, you say, that was my
entire PhD. What the hell isit? So? I think that there
is a evolved human functioning and disabilityis a negative departure from that. However,

(02:43):
um, you know, everybody hasa departure from how you could be,
and therefore we always need to lookat both disability and context. So
what are you expecting people to doin our society at this time? And
also to look at yeah, tolook at cultural values behind what is the

(03:10):
disability and what is not. Forexample, yeah, if I lacked the
lowest digit of my hand, thatwouldn't really be a disability to somebody who
is working in academia. But ifI was a concert pianist, there'd be
a huge disability. I couldn't bea concert pianist. In a case of
a comedian Dave Allen, he literallylacked the knuckle of his left hand.

(03:40):
He made a joke out of it. He was a comedian to matter at
all, but in other areas itmight have mattered. And so it shows
that what we think of as thedisability 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 realizethat many people are neurodivergent, and of

(04:05):
course you know that mental difference maymanifest in different ways. There may be
among people who may millions on strugglingexchange or for their business. Or it
may be people who are turned toa life of crime and end up in
prison, but are very rule breakingand risk taking in their criminal career.

(04:28):
As it were, so our culturalvalues say, really, whether disabilities positive
or negative? A lot of thetime, are you kind of drifting slightly
into what we call the social andthe medical models there then in terms of
the disability being socially constructed, ifyou like, yes, and am not
surprisingly because that's what I know usabout. And what happened was that historically

(04:55):
disabled people would defined as people withthings wrong with them. They had the
death set of mind, body,They explained their social situation. And if
you like, this is a caseof biological reductionism. And when I say
it like that, immediately our hacklesgo up. We get they worried because
of course, you know, slavery, a gender subordination, a pressure of

(05:19):
lesbian, gay people, all ofit was justified on the basis of biological
difference. You know, it's notthat we are nasty people. It's merely
that they deserve to be subordinate tothe master race or whatever it might be,
and therefore we should look very carefullyat disability and how much is depending

(05:42):
on what we expect people to beand 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 beforeI arrived, and when I arrived,
I arrived with a cohort women too. And this college was founded in thirteen
forty seven, and one thing itdidn't have was women's toilets, and of

(06:08):
course women you know generally, they'renot 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 ofthe of the academic institution, it was
not part of the architectural landscape.And the same as the case with disabled

(06:30):
people. I use a wheelchair,So when I can't get into a building,
is that because it doesn't have accessibilityor 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 ofthat, But what I want to say
is that whereas disability is socially created, there are lots of Like I gave

(06:55):
the example of the building lots ofexamples of that. There is all so
an intrinsic biological element. So whatI want to do is to balance the
biological and the social, and thecultural and psychological for that matter. And
I want to say they all gointo the makeup of what it takes what
it is to be disabled. AndI don't want us to, as it

(07:17):
were, forget that we have bodiesand that they don't always work as we
want them to. With that inmind, then how do you Because there's
obviously subcategories of disability. So whatare those subcategories that we tend to talk
about within disability? Well, wemight think about physical impairments, and obviously

(07:40):
I was born with the physical impairment. We might think of mental health conditions,
and then we're into a whole areaof both common and mental disorders as
they are called I wouldn't use thatterm disorder, but like depression or anxiety,
whatever, and then more serious mentalillness like schizophrenia, bipolar condition,

(08:00):
or personality disorder, which are muchmore 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 danceror so forth, but this idea is
very instant that we have an averageidea of our hundred and learning disability defined

(08:22):
as two standard deviations be low average, and that counts as learningly disabled.
And so of course lots of peoplein society have learning disability of no obvious
cause, and they may be capturedwithin that. But you can immediately see
how our notions of average, howour notions to standard deviation, and they're

(08:46):
the ways that we define this,but there's contingent. They are what we
decide to define, and of coursewe live I'm taking this slide of of
the Trinity Dublin long rum. Lookat all these books. We live in
a knowledge economy, and of coursethat immediately disables people. We're learning difficulties

(09:09):
who can't read or can't retain information, so fitz flip, mental impairment,
mental illness, learning difficulties. Wealso have, obviously, the whole railm
of sensory conditions like deafness and bliness, deaflineness, and again we might say,
well, is it that somebody's deathor is it that we don't know

(09:33):
sign language who we can't converse witha deaf person In the same way,
there's a famous book by my friendNoura Gross. Well, everyone here spoke
signed, which is about Martha's Vineyard, which was said is an island of
Massachusetts. And because it was settledin the pilgrim Father's days by people who

(09:56):
had a hereditary form of deafness,they were not the jority, but there
were a substantial minority, and soeverybody used Sia language. And what Laura
found when she interviewed old folks fromthat community was they couldn't really remember who
was definitely who wasn't because everybody usedside language, and therefore being death was
not so much for disability. Andthen I would also add chronic health conditions.

(10:24):
So a lot of these are invisible, so there might be MSS or
dabets or epilepsy. Now, what'squite interesting about all of these conditions,
but particularly chronic health conditions, isthat we have an objective idea that these
people or those people have something whichmakes them disabled. But subjectively they may

(10:46):
not think of themselves that are disabledat all. And of course half all
disabled people over the age of sixtyand older people obviously often don't define this
disabled at all. They may havefunctional deficits, but they say, well,
this is just normal aging. Thisis natural. So and indeed,

(11:07):
when the former Disability Rights Commission didresearch, they found that fifty percent of
people who had rights under the DisabilityDiscrimination 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 asdisabled at all. And therefore they changed

(11:28):
their strap line. Instead of saying, where you know, I can't remember
what it was, but we supportthe rights and disabled people, they said,
we support the rights of people whoare covered by the Disaposity of Discrimination
Act or something like that. Soyou didn't have to define us disabled subjectively
before you were covered by that projection. Interesting it is. Yeah. One

(11:54):
of the questions a student put tome, and I struggled to answer it,
so I thought, I put itto you. Is that they asked
about that does it need to haveDoes 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 knowyou will return back at some point,

(12:16):
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 definesthe disability in terms of long term right.
Having said that, somebody who istemporarily in a wheelchair or a splint

(12:39):
or whatever, or has some otherimpairment finds out what it's like pretty quick.
They find out that the world isnot designed for people who are different,
that's one thing. And they maystart being seen as dependent, they
might start being seen as capable,and so they again they get some sense

(13:03):
to the stigma involved in disability andthe way that people are treated. However,
as you say, they're not longterm disabled. So they get out
of it and then hopefully their viewsare changed. They are more inclusive and
less likely to define people as incapablemerely because they can't do a thing.

(13:28):
And what I can't remember that I'veI've talked about this before in lectures.
I probably have. But we canthink about a group of people who don't
care their own money, live insafregot accommodation, don't go to normal schools,
are stared at wherever they go,and this would sound like a very

(13:52):
sigmatize negative experience, but it wouldalso count as a description of the British
royal family. So clearly, clearlythere is a difference between physical dependency flight
and social pendency. You can bephysically very dependent on the people and socially

(14:15):
very independent, so you can bevery powerful in fact, and in fact
in the historical societies, the morethat people had things done for them,
the more powerful they were. Sothis is really odd in a way that
the definition of power is having somebodyelse wipe your bottom. That's not,

(14:39):
you know, the gentleman of theschool 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 likethat, and therefore we should try and
as it were, a change thosesocial relations to give people more respect,
whether or not they need other peopleto do things with them more for the

(15:03):
more to make their lives better.The Sociology Show podcast relies on the kind
contributions of sponsorship and donations. Ifyou enjoy the show, then you can
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fund me page. Simply visit UKdot GoFundMe dot com and search for the

(15:24):
Sociology Show If you can donate,then you will be sent to Sociology showpen
as a small thank you for yourcontinued support of the show. You mentioned
the word stigma. One of thequestions I wanted to put to you was
about representations in the media. Ijust wondered where you thought we were at
the moment. There's arguments to saythat things have got much better, much

(15:46):
improved, but there's also arguments tosay that often representations are still very stereotyped
and still quite basic. I wasinterested 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 overmy lifetime. I just had my
fot seventh birthday, and when Ido a lectures about disability to lay audiences

(16:10):
or student audiences or whatever, Ihave to obviously check my examples, not
just because they're all old and peoplethat understand them, but also because there
have been improvements. So but youknow, it takes a lot of time
to change attitudes. When I wasyoung, gay people, gay men were

(16:30):
seen as being effeminine and camp andyou know, and figure it's fun.
And now absolutely there is total Ithink total acceptance total inclusion and good arrange
of good images. So gay peoplefrom me lots of different things and can

(16:51):
be celebrated for that. Now thatchange happened in over years. So as
I say, in twenty or thirtyyears, Larry Grayson or John Inman or
whatever being very camp and now it'snobody really cares and it's accepted now,
not by everybody and not everywhere,but broadly. And so the change in

(17:15):
disability representation is going to take along time. But we see many more
disabled people being actors. We seethe story of the disability movement being represented
by writers like Jack Thorne or infilm. And I don't know, I

(17:36):
didn't see it, but you knowthis film When Barbara Met Johnny was about
Barbara Lasinki and Johnny Trender. Iused 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. Soit's a very odd for me who's lived

(17:56):
through it. It's a very oddthing to see. But there are more
representations. But I also think thatwe have a what's the word, a
body fascism that now more and morebodies have to be a certain way and
how to be young and now haveto be capable and would actually been so

(18:18):
our tolerance of difference has reduced,so there is a sort of you know,
disabled people are fine, but everybodyis going to have to be much
more and only certain solid disabled people. A friend of mine, Yan Grewer,
in Norway, did talk about oran article about representations of disability in

(18:40):
Norwegian television, and what I foundwas 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 thesame you could say for wonderful representations
of the Paralympics. Yes, ifyou're a winner, that's fine, but

(19:02):
a lot of disabled people couldn't possiblydo 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 therepresentations are either oversimplified or stereotyped or often
patronizing. I think is the workthat comes up that's still the case,

(19:23):
you would say, I think there'sa greater range. I think disabled people
are allowed to be more things.But I mean historically disabled people were,
as it were, second dying tragicfor brave and plucky and and and people
like telling team in in in Well. I used to call it Dickens Christmas

(19:44):
Carol. I now call it amuppet Christmas Carl. People might remember that
or they were actually evil. SoI'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 inmy passing. But lots of negative,

(20:04):
physically deformed characters. James Bond villainsoften very physically deformed and so forth.
And then thirdly, there's sort ofsuper cript idea, and I think that
like Stephen Hawking, you know,a crippled man but solving problems the universe,

(20:25):
or a lot of stereotypes of disabledpeople are about this sort of super
crip idea. Now, what's wonderfulnow is so people are just able to
be human, just able to beintersting, boring, bad, good,
sexy, un sexy, the rangelike other human beings. And that's what

(20:49):
that's what disabled people want. Theywant that range of stereotype that they don't
want sunny flip from being always uselessto being oh it's powerful. They want
to go, yeah, I'll doit 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 exactlywhat we've what we want. Some of

(21:15):
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 limitationsand be better than anybody else. And

(21:37):
these stereotypes, these one dimensional plotideas, make for very shallow film and
TV. And if you think aboutit, these stereotypes are what we used
to have with with with with blackfolk, an Asian folk, or gay
folk. They are very limited.Yeah, it's it's like, no,

(21:59):
that's not We're like, we're ordinaryhuman beings and you know, we do
everything you do, but we're justa little bit different. And that does
not explain why we do what wedo or whether we succeeded whether what we
do. I probably should have askedyou this right at the start on are
you happy? Because lots of studentswould have seen your name in a book

(22:19):
but might not be aware of yourown disability. So I've got I've got
lots. So, first of all, I was born an a kind of
plasia, long long word. Itbasically is a genetic condition. My father
had it, he said, nowmy children have with my granddaughter had to
it. So that's why my armsyou know, I spreading up my arm

(22:41):
as here, but they're not verylong, and I've got a slightly different
shaped head. Um. So that'sthat's what I was born with. In
two thousand and eight, I becameparalyzed. That's partly, Well, that's
largely because I have a kind ofplasia. And so can you hear me?
We're around and bashing around in myliving room, so I use the

(23:04):
wheel chair. I'm paralyzed, sothat's an acquired impairment. And thirdly,
a little while ago or a coupleof 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 knowum, and she said, well,
should get tested, And so Iwent and got tested and I do.

(23:27):
I do have ADHD. So andin a way you started this interview
by saying, why have you doneso many different things? Well, that
is class at ADHD behavior. Youget bored and you do something else,
and you're not very good at stickingat things. And I think that's actually
a strength as well as a weakness. I'm not you know, look at

(23:49):
all these books. I'm not necessarilythe great scholar of who's written a hundred
books, but I am the stealerbreath. Field of Breath is very good.
And on that point, talking aboutyour 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 youtalk recently and she mentioned you were writing

(24:11):
or have written something about disability andsex and she said, you've got to
ask Tom about this. I wrotea book a long time ago with Kath
Gillaspie's Elves as Sadly just Died andDominic Davis called the Sexual Politics and Disability.
And this is the first book Iwrote in I think nineteen ninety six,

(24:32):
and we did an update twenty yearslater. We talked to people in
twenty sixteen and wrote an update myselfand Sarah Richardson. So but so I
am. We've just been in abig bid to look at sexual reproductive health,
for to say, with people inBritain. So we're waiting on tent

(24:55):
hook CEO. You're putting your funnybid and sometimes they work sometimes. So
we really want to explore whether disabledpeople get access to sexual unless the education,
abortion, contraception, pregnancy disease,sexual sexual restance, diseases, all
of that spreading. We want toknow sexual violence. We want to know

(25:18):
whether disabled people who included in thoseprovisions. So yeah, I am still
very instant and sex u and Ihope to do more work in that area.
Fantastic. I wondered, as wellas just thinking, just flipping back
to the media for a moment,what your interpretation was of programs like Undatables,

(25:41):
Love on the Spectrum and so onagain. Do they fall into the
patronizing, the hedge patting sort oflooking 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 disabledpeople would say, I'm datables,
what a terrible, terrible title.But I actually did watch one of the
pro grams and because friend of minesoon vite voiceover. But I thought,

(26:04):
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 cuteslightly patronizing. And the question which all
disabled people have asked is why aren'tthere disabled people on regular programs, you

(26:25):
know, whether it's stating programs ormakeover programs or grease shows or whatever else.
Why aren't they just there? Becausewe are part of the population.
There are billion, more than abillion des sabled people in the world,
and we may come about fifteen percentof the population, about one in a
or more of the population. Andtherefore, why aren't we just there?

(26:49):
Why aren't we contestants from time totime? Why aren't we on the apprentices
from time to time? And increasinglywe are. So that's really sighting,
it's really good, and so weshould be and I think, yeah,
this picture of of the long libraryand the book accows around the corner.

(27:10):
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 thein the normal hemisphere really, and
we want to change that. Wewant to say we're not all white men.
We are diverse, we're different,we're men and women, and we're

(27:30):
defined and differently with Dan straight thatwe define differently. We're disabled and we'n
disabled and we defined differently. AndI think that is how it should be.
That's how it used. So let'shave TV or magazines or museums that
reflect that. I just wondered ifthere is there a difficult balance because quite
often, you know, if thereis a disabled character in a program,

(27:53):
you get some oy rolling and thisis just tokenism, that sort of feeling
that they're they're they're just to sortmake up the quota as you like.
Yeah, yes, And I alwayswonder whether my career, my success and
I have been quite successful, isexplained by my inequalities, or because they
wanted a disabled person and they thought, well, he's bright, he can

(28:18):
taur will have him. And Ithink it's a mixture. Sometimes it is
that he is tokenism. Having saidthat, even tokenism isn't complete waste of
time. It's obviously you're not justseeking there silently not able to contribute.
It's honously a plea of weight asit were within the context. Then for
other disabled people who come after you, for disabled kids, they can see

(28:41):
you in public spaces, they cansee you in organizations, they can see
you on the television or whatever itmight be, and they go, you
know what, I could do thattoo, And it is part of moving
us towards what we want, whichis that nobody cares. That's what we
really what I'd said earlier, thatwhether they're going off straight, nobody cares.

(29:03):
And that's exactly how it should bein terms of disability. There's what
we would call reasonable combination. Solet's make sure that you can get in
the building, that you can usethe toilet, that we take account of
your of your difference, and thenlet's let you get on with it,
and let's, you know, leta thousand flowers bloom or whatever. I'm

(29:23):
glad to hear over your career onit sounds like that far more positives than
negatives. You know, it's it'snot perfect, but we are making huge
progress, I think so. Ithink I think there are interestinct developments,
like we've had a process of welfarereforming, like in them now a lot
of disabled people still depend on whetherbenefits and therefore that has really hit them

(29:47):
hard, harder than always say theythink COVID is hit to say, were
people hard not only because many disaywere people are older or have compromised immune
systems and are more at risk ofCOVID, but also because COVID the shutdown
really negatively affective disabled people. Andyou can think of this, you know,

(30:07):
you know the guide dogs, they'renot able to social distance people with
intellectual disability. What do they doall day? Will they go to the
projects which are created and which havebeen all stopped during COVID so they were
stuck at home watching the telling.So you know, it shows that this

(30:29):
society that we take for granted iscontingent, constructed, and if it's taken
away, it can create a hugenumber of barriers and difficulties for people.
Thank you, Thank you, Tom. I always ask people to give up
some details at the engine and aninterview, so people want to find out
more about your work or follow youon Twitter? Are you happy to give

(30:52):
out some Absolutely? So. Ifyou don't know throughout disability, read my
book Disability The Stinks because it iswhat it says on the packets. It's
very straightforward. You should be inthe library. If you really want to
get the grits to it, readsomething like a Disability Rights and Wrongs or
the Disability Reader, both of whichwill give you more extensive information. If

(31:18):
you want to follow me on Twitter, it's at Tommy Shakes, so it's
one who had Tommy shakes. Friendof mine used to sing Tommy shakes.
I'm not called Tommy never closing tomicTommy shakes. And my website is called
a Farmer of Thoughts dot co dotuk, So farmer of thoughts all one

(31:41):
word dot co dot uk. Andthat'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 ofthoughts and all the crops I raised
I give away. And that's verymuch what I think a public intellectual should
be about these days in any country. Well, thank you very much for

(32:07):
the details. Thank you very muchfor your time and also your sterling work
throughout the years, and I thinkfuture students will continue to enjoy learning all
about your research. It's a wonderfulway of thinking about sociology is start with
disability. That's my advice. Thankyou, Thank you again for your time.
By now, the Sociology Show podcastrelies on the kind contributions of sponsorship

(32:31):
and donations. If you enjoy theshow, then you can help with the
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Simply visit UK dot GoFundMe dot comand search for the Sociology Show.
If you can donate, then youwill be sent to Sociology showpen as a
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(32:54):
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