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Disability academic Tom Shakespeare: Why I've started writing novels with a disabled hero

Join Access All host Emma Tracey for a special episode, dedicated to an interview with disability academic Tom Shakespeare. He explains why he turned to writing fiction.

Tom Shakespeare is Access All presenter Emma Tracey's special guest for an Easter spectacular edition of the podcast.

He talks about becoming a novelist for the first time in his 50s, and why he created a disabled character to be the hero of his first non-fiction book.

He also discusses the work he is better known for - a lifetime of disability activism and research - and his profile as a commentator on issues that affect disabled people.

The episode was made by Daniel Gordon, with Niamh Hughes and Emma Tracey. The editor is Alex Lewis. Recorded and mixed by Dave O'Neill.

To get in touch with the team, email accessall@bbc.co.uk or find us on X, @bbcaccessall .

Release date:

Available now

23 minutes

Transcription

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03rd April 2024

bbc.co.uk/accessall

Access All 鈥� episode 98

Presented by Emma Tracey

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EMMA-听听听听听听听听听听听听 We have an Easter treat for you this week because the podcast is given over to one very special guest. I mean, you have to be pretty special to get an entire episode to yourself. Have you guessed who it is?

MALE-听听听听听听听听听听听听听 No.

EMMA-听听听听听听听听听听听听 No, nobody鈥檚 guessed who it is yet. Don鈥檛 say too much you, the other side of the room. And let鈥檚 get on with the show.

MUSIC-听听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听听听 Hello, and welcome to Access All, the 麻豆社鈥檚 podcast. We are out every week and we talk about disability and mental health. I鈥檓 Emma Tracey, coming at you from London. And thank you so much for listening to this very special Easter episode. And you鈥檙e welcome in to my interview with my very, very, very special guest. He is an academic, and he鈥檚 a researcher, and he鈥檚 an artist, and he鈥檚 an author, and he鈥檚 been around for, like, ever 鈥� well not ever, maybe since the 鈥�80s anyway. It is the incomparable Tom Shakespeare. Hello Tom.

TOM-听听听听听听听听听听听听听听听 Hello there, Emma.

EMMA-听听听听听听听听听听听听 You鈥檙e so welcome to Access All. I can鈥檛 believe we鈥檝e not had you on yet. We鈥檙e two years in now.

TOM-听听听听听听听听听听听听听听听 It鈥檚 slightly off-putting being here in the spotlight, but I鈥檒l do my best.

EMMA-听听听听听听听听听听听听 You love the spotlight!

TOM-听听听听听听听听听听听听听听听 Well, you could say that, but I don鈥檛 think I do. I prefer to be behind the scenes.

EMMA-听听听听听听听听听听听听 Do you, really?

TOM-听听听听听听听听听听听听听听听 Yeah I think so. People think I鈥檓 full of ego but I don鈥檛 think I am.

EMMA-听听听听听听听听听听听听 Okay, well that鈥檚 good to know. But you have been involved in so many different conversations about disability. You鈥檝e written many, many academic books and papers, non-fiction. But the reason we鈥檝e got you on just now is because your first novel has just been released.

TOM-听听听听听听听听听听听听听听听 Yes, it鈥檚 just come out. It鈥檚 called The Ha-Ha, and it鈥檚 really a dream come true. It鈥檚 totally thrilling for me. You think I鈥檝e seen everything, I haven鈥檛, and being an author of my own is great.

EMMA-听听听听听听听听听听听听 And what鈥檚 the novel about then?

TOM-听听听听听听听听听听听听听听听 It鈥檚 about, funnily enough, a disabled guy [laughter] in a wheelchair, and he has friends and he has an accessible apartment and an accessible car. And guess what? There are no problems for him, beyond the usual problems of will he find somebody to fall in love with him and will he lead a good life; that鈥檚 all that matters to him.

EMMA-听听听听听听听听听听听听 And why did you decide to write about yourself, Tom?

TOM-听听听听听听听听听听听听听听听 It鈥檚 not me!

EMMA-听听听听听听听听听听听听 [Laughs]

TOM-听听听听听听听听听听听听听听听 It鈥檚 really not me. I am in a wheelchair so in that sense it is me, and there鈥檚 lots of experiences that I鈥檝e had. It鈥檚 a satirical novel. And people are away for a weekend and they say oh yeah, we鈥檇 like the papers please, and they鈥檙e all non-disabled. And so our hero, Fred, goes down to the shop to get the papers, and I describe how to get into a car if you鈥檙e in a wheelchair, that is to say how to stow the wheelchair and how to drive away.

EMMA-听听听听听听听听听听听听 In a nutshell, what鈥檚 the key to getting into a car and driving away?

TOM-听听听听听听听听听听听听听听听 Oh my goodness.

EMMA-听听听听听听听听听听听听 Especially if you鈥檙e angry, you鈥檙e coming out of an argument and you鈥檙e like, 鈥業鈥檓 going, I鈥檓 leaving!鈥�

TOM-听听听听听听听听听听听听听听听 Take a deep breath, you open the door, you get in the front passenger seat, you wind the seat down, you put on the seatbelt so you don鈥檛 fall out, you lean over, you take the wheels off the wheelchair, you put them in the back, you take the chassis over, you wheel up, rotate the seat up to normal, you shut the door, you take off the seatbelt and you transfer across into the driving seat, you put the seatbelt on, and you drive away. And when you get there you have to reverse the process in order to get the wheelchair out and get on the road, or a pavement rather. And I describe what I鈥檝e just described to you: get in the car, driving down, getting out of the car, little kids staring at him, getting the papers, getting back in the car, getting out the car, bringing the papers. And everybody says [bored voice] 鈥極h, thanks very much鈥�.

EMMA-听听听听听听听听听听听听 I kind of hope that鈥檚 not all the novel鈥檚 about.

TOM-听听听听听听听听听听听听听听听 It isn鈥檛, but I wanted to describe it in some detail. It鈥檚 not really funny but it is what we have to go through. There鈥檚 a lot of annoyances and frustrations which make life more, maybe more interesting, but certainly more difficult.

EMMA-听听听听听听听听听听听听 You have achondroplasia, you鈥檙e a short person. Well, how do you describe yourself nowadays? Because people describe themselves鈥�

TOM-听听听听听听听听听听听听听听听 Well, I am bald.

EMMA-听听听听听听听听听听听听 [Laughs] how do you describe your height nowadays?

TOM-听听听听听听听听听听听听听听听 Oh, I don鈥檛 know, I鈥檓 a restricted growth. But I have restricted growth or a short stature. Or if I鈥檓 in America [American accent] I鈥檓 a little person, which makes me sound like an elf.

EMMA-听听听听听听听听听听听听 So, you don鈥檛 really like little person?

TOM-听听听听听听听听听听听听听听听 No. You can call me what you like. I suppose I would say you might think of me as a dwarf.

EMMA-听听听听听听听听听听听听 I don鈥檛 think of you as a dwarf; I think of you as Tom Shakespeare.

TOM-听听听听听听听听听听听听听听听 No, but a stranger might. They鈥檇 say, 鈥極h he鈥檚 the short guy鈥�.

EMMA-听听听听听听听听听听听听 So, why didn鈥檛 you give Fred, your main character, achondroplasia as well?

TOM-听听听听听听听听听听听听听听听 Because it鈥檚 so rare. And maybe there鈥檒l be another character who has. And it would be too like me. I wanted him to be not me, but a common disabled person. He鈥檚 broken his back. So, the whole thing about acquiring disability is funny and interesting because of course I had to, kind of, relearn disability when I became paralysed at the age of, I鈥檓 going to guess, 42.

EMMA-听听听听听听听听听听听听 Right, so that was a big鈥ou were already, you were used to being鈥�

TOM-听听听听听听听听听听听听听听听 I was used to being disabled; I鈥檇 been short since I was born. But suddenly I was in a wheelchair. Suddenly I had all sorts of access barriers which I hadn鈥檛 dreamt of. But I鈥檒l tell you one thing, people stopped staring at me. Because they tend to stare at people who look odd, but they鈥檙e kind of used to people in wheelchairs so they let you get on with it.

EMMA-听听听听听听听听听听听听 So, do you look more like a regular height person when you鈥檙e in a wheelchair then?

TOM-听听听听听听听听听听听听听听听 I think so. You become invisible, it鈥檚 quite interesting. Anybody who鈥檚 got a very visible impairment who suddenly ends up in a wheelchair may also share that experience of becoming almost invisible. And I think that鈥檚 the problem, people just go, 鈥極h god, it鈥檚 another person in a wheelchair鈥�. They don鈥檛 think of the person, they think of the wheelchair. I鈥檝e been on trains and buses and planes where people say, 鈥極h there鈥檚 a wheelchair coming鈥�. I鈥檓 not a f-ing wheelchair. I鈥檓 Tom. Don鈥檛 call me The Wheelchair.

EMMA-听听听听听听听听听听听听 So, you had new things to be annoyed about?

TOM-听听听听听听听听听听听听听听听 Oh, lots of things to be annoyed about; mainly other people鈥檚 idiocy. We鈥檝e all been places where people are dying to help you and think you鈥檙e incapable, or think that suddenly all that matters is your wheelchair, why you鈥檙e in a wheelchair. Whereas you鈥檙e just an average person and you have all the same needs as everybody else, you just happen to be in a wheelchair.

EMMA-听听听听听听听听听听听听 Shocking, Tom Shakespeare, shocking.

TOM-听听听听听听听听听听听听听听听 Yeah. Happens to us all. It doesn鈥檛 matter what you鈥檝e done and where you鈥檝e been, if you are in a wheelchair or you鈥檙e disabled you are suddenly that bloke or that woman.

EMMA-听听听听听听听听听听听听 And this is your first fiction book. You鈥檝e written a lot of non-fiction. Why did you change from writing these academic texts and non-fiction books to fiction?

TOM-听听听听听听听听听听听听听听听 Well, you can say it鈥檚 a challenge. You鈥檝e got to try and take on something new. But also the fact is that my academic books most people don鈥檛 read them, whereas you hope to sell 1,000, 10,000 copies of a novel, so why wouldn鈥檛 you go for that? And the thing is you can still get your point across but you have to bury it. It鈥檚 a story, it鈥檚 a love story, but buried at the heart of it is this idea that disability need not make a difference. You can be included.

EMMA-听听听听听听听听听听听听 You鈥檝e written a lot of books about disability. What is the one that keeps coming back to you that people keep talking you about again and again?

TOM-听听听听听听听听听听听听听听听 I think people keep talking about Disability Rights and Wrongs, because it was a book which said, look, disability is complicated, the social model back in the day in the 鈥�70s was part of the story but it鈥檚 not the whole story, and we need to understand the lives of disabled people in a much more rich way.

EMMA-听听听听听听听听听听听听 So, the social model is where the barriers are barriers society puts up or that are made by society, rather than the impairment itself, right. Am I describing that accurately?

TOM-听听听听听听听听听听听听听听听 That鈥檚 right. And I think it went too far, it over-egged the pudding, because I think most disabled people say yes, barriers are important, attitudes are important, but also most impairments, not all, are a bit of a nuisance and they may be psychologically or physically difficult to cope with. Not all the time, but on a bad day it鈥檚 the last thing you want.

EMMA-听听听听听听听听听听听听 So, you don鈥檛 think social model covers it fully?

TOM-听听听听听听听听听听听听听听听 I don鈥檛 think it does. I think we are disabled by society, but we鈥檙e also disabled by our bodies and minds, they鈥檙e also difficult in some contexts. Now, of course I am completely at one with everybody who says we need to remove barriers, we need to be included, we need human rights, all those things, of course I am.

EMMA-听听听听听听听听听听听听 Yeah. But people weren鈥檛 that pleased with you for that, were they?

TOM-听听听听听听听听听听听听听听听 No.

EMMA-听听听听听听听听听听听听 For dissing the social model [laughs].

TOM-听听听听听听听听听听听听听听听 I had people saying, 鈥極h, you鈥檙e not so bad, are you?鈥� and they obviously thought I was some terrible person for daring to question it. But the point is the social model was devised by disabled people in the 1970s. We鈥檙e now in the 鈥�20s of the new century, surely we need to develop it and understand a richer account of what it is to be human. And remember the social model was developed by UPIAS, the Union of Physically Impaired Against Segregation. They were mainly wheelchair users. There weren鈥檛 many people with neurodivergent conditions. There weren鈥檛 even many women, and there was a lot of sexism in the early days of the disability movement. So, talking about all the different things that matter to us I think is important.

EMMA-听听听听听听听听听听听听 And do you think more people now are thinking quite similarly to you? I mean, when did that book come out, Disability Rights and Wrongs, was that in the 2000s?

TOM-听听听听听听听听听听听听听听听 It came out in 2006. So, I鈥檇 been saying and other people have been saying this since the turn of the century. I think the danger is that we see the social model is the answer to being a progressive disabled person. And I want to say actually there are lots of different ways of being disabled, there are lots of different ways to identify, let 100 flowers, 1,000 flowers bloom. I mean, now we have lots of people with hidden impairments, with neurodivergent conditions, lots of people who develop impairments through ageing. They all identify slightly different, and that鈥檚 fine, and we鈥檙e allowed to.

EMMA-听听听听听听听听听听听听 The social model is a useful tool.

TOM-听听听听听听听听听听听听听听听 Of course it is.

EMMA-听听听听听听听听听听听听 We talk about it all the time, and you don鈥檛 deny that at all. It鈥檚 just it needs to be, in your opinion, fleshed out a bit more and more, sort of, thought around it not being the be all and end all.

TOM-听听听听听听听听听听听听听听听 Yeah. And we are disabled by society, of course we are. We鈥檙e also disabled by our bodies and minds, many of us, much of the time. And that鈥檚 okay. We鈥檙e still valued human beings, we鈥檙e still like everybody else. Because, you know what, everybody is limited to some extent by their bodies or minds; it鈥檚 not just us.

EMMA-听听听听听听听听听听听听 I mean, it鈥檚 not the only time you got into some trouble with disability activists though. You also have spoken out quite a lot about women鈥檚 right to choose to abort a foetus if the child might be disabled. You鈥檝e spoken out very candidly about your thoughts on assisted dying, you know. Liz Carr has one take on assisted dying, that鈥檚 it a slippery slope, the laws around it, and that disabled people are in trouble if they start bringing in laws around that to make it legal. How do you deal with the backlash from other disabled people? Is it less horrible when it鈥檚 non-disabled people?

TOM-听听听听听听听听听听听听听听听 Well, Liz and I are great friends, so I don鈥檛 think it means you can鈥檛 be friends with people you disagree with. And I don鈥檛 think it means that all disabled people think the same thing. After all, the majority of disabled people probably support some form of assisted dying legislation. So, maybe the disability activists are out of tune with other disabled people. There are as many disabled people have come up and said, 鈥楾hanks for saying what you said鈥� or, 鈥業 really identified鈥� or, 鈥榊our book was the first time I saw myself鈥� or whatever it might be; and they are disabled people, not non-disabled people.

EMMA-听听听听听听听听听听听听 So, for listeners who haven鈥檛 been following Tom Shakespeare as closely as I have over the years, what are your views on assisted dying?

TOM-听听听听听听听听听听听听听听听 You know that makes you sound like a stalker, and I know you鈥檙e not [laughs].

EMMA-听听听听听听听听听听听听 I鈥檓 not but I have been in disability a long time [laughs].

TOM-听听听听听听听听听听听听听听听 You have, we both have. So, I think that for people who are terminally ill, only terminally ill, then it is part of what should be available. So, you should have the right to die within British legislation, just as you do within Oregon and Washington and California and Montana and lots of American states. What I do not like is what happens in Canada and what happens in Belgium and what happens in the Netherlands where the criterion is suffering. Because yes, we all suffer from time to time; that shouldn鈥檛 be the reason we have the right to assistance with dying. But if we are terminally ill I don鈥檛 see how it diminishes the rights of disabled people to allow access to assisted dying.

EMMA-听听听听听听听听听听听听 But what about people who鈥檇 say that they鈥檙e called a burden, they鈥檙e called this and that on society as soon as they鈥檙e even ill that this might be brought to them and suggested to them? Because, you know, lots of disabled people live with terminal diagnoses, they live with life-limiting conditions.

TOM-听听听听听听听听听听听听听听听 Yes, they do live with life-limiting conditions, but they鈥檙e not going to die in six months. And those are the criteria that are normally put forward for medical assistance in dying. And I don鈥檛 think it means that you are less worthy or you鈥檙e not part of society or whatever else. It鈥檚 about your rights. We have rights to independent living. Surely we should have rights to end of life as well, not just disabled people, all people. And if we restrict it to people where death is reasonably foreseen, we鈥檙e not providing death where it wouldn鈥檛 exist, we鈥檙e saying, you鈥檙e going to die of, say, motor neurone disease or cancer, and we鈥檙e enabling you to have the power over how you die, that鈥檚 all.

EMMA-听听听听听听听听听听听听 Is there anything major around disability that you鈥檝e changed your mind on over the years?

TOM-听听听听听听听听听听听听听听听 Yeah, of course there is.

EMMA-听听听听听听听听听听听听 That you鈥檝e been really public about and then changed your mind on?

TOM-听听听听听听听听听听听听听听听 Yes, absolutely. So, for example I was against embryonic stem cell research, I thought it was wrong. And I had, if you like, the yuk reaction that many people do. And I thought, well that鈥檚 not consistent because I鈥檓 not against abortion, I don鈥檛 believe that life it starts at conception, I don鈥檛 believe that up to 14 days this collection of cells is a person. So, therefore I shouldn鈥檛 oppose embryonic stem cell research, and so I changed my view.

EMMA-听听听听听听听听听听听听 Okay. Let鈥檚 move on to much safer territory. Climate change [laughs], you鈥檝e talked a lot, I mean, disability and the environment I鈥檝e been doing quite a lot of work around this as well and how disabled people are treated in disaster situations. And you鈥檝e even found that climate change can cause disability.

TOM-听听听听听听听听听听听听听听听 Well, yeah. As we know lots of disabled people don鈥檛 get the news about disasters. Many disabled people are disadvantaged when they become refugees, and they鈥檙e disadvantaged by informal settlements and trying to get water and trying to get medicine and trying to get out. And of course lots of disabled people in high income countries are seen as a contributory to climate change because they have single-use plastics or plastic straws or whatever else. But that isn鈥檛 the problem. We are not the problem. We need to live in a world which understands the world and it鈥檚 changing and contribute less to it. And we can have both: we can have just sustainability where disabled people and others are also respected alongside a more sustainable lifestyle.

EMMA-听听听听听听听听听听听听 Okay, so bring back straws?

TOM-听听听听听听听听听听听听听听听 The vast majority of waste plastic is packaging. Let鈥檚 start with packaging and let鈥檚 minimise that. And if disabled people need single-use plastic for straws or catheters or anything else that鈥檚 not the problem. The problem is the mass use of plastic.

EMMA-听听听听听听听听听听听听 Tell me a bit about your current work?

TOM-听听听听听听听听听听听听听听听 I work at the London School of Hygiene and Tropical Medicine, which is a title I say very fast. And I work in the International Centre for Evidence on Disability where, with my colleague Hannah Cooper and about two dozen other researchers, we鈥檙e trying to find out if, for example, interventions to improve the lives of disabled people in low and middle income countries actually work. We鈥檙e trying to work out what gets them into school, what improves their income, what gets them health coverage. We鈥檙e trying to train health workers in Uganda and other places to be more inclusive with disabled people. We鈥檙e trying to provide peer support projects for people with psychosis. All sorts of projects.

听听听听听听听听听听听听听听听听听听听听听听听听听 What I found most interesting I think was that many, many disabled people are surviving, are doing well, are successful despite all the odds. There鈥檚 lots of reasons, lots of attitudes and lots of barriers which are making life difficult, but disabled people are resourceful and they have self-belief and they get it right. And it鈥檚 surprising the amount of the time they鈥檙e not ground down, which is very welcome, and makes them great partners when people in the west, like me, want to have local partners to do it properly in low and middle income countries.

EMMA-听听听听听听听听听听听听 So, the key is making sure you have disabled partners in those countries?

TOM-听听听听听听听听听听听听听听听 I think it鈥檚 really important. One of the things we鈥檙e trying to do is to get more disabled people as researchers, which means supporting them to do PhDs, and to be our colleagues on grants.

EMMA-听听听听听听听听听听听听 Now, listen, we could have talked all day because there are so many things that you know so much about, and there are so many things that you鈥檙e interested in. We haven鈥檛 even gone near stand-up, art, dance, anything like that. Why do you do so many different things?

TOM-听听听听听听听听听听听听听听听 Well, people do lots of different things. And also there are so many things, it鈥檚 a great time to be disabled, in the sense that there are many, many things to be done. And you can look around, you can see and hear all sorts of people doing good things. And that鈥檚 right. Disabled people have something to say, something to offer. Even though there are lots of problems, there are lots of things that go right for a lot of disabled people. And I was lucky to be here at the right place at the right time.

EMMA-听听听听听听听听听听听听 Tom Shakespeare thank you so much for visiting me for a chat.

TOM-听听听听听听听听听听听听听听听 Thank you for having me.听

EMMA-听听听听听听听听听听听听 Do you know that it鈥檚 our 100th episode coming up, and we have been asking all of our guests a specific question that I would also like to ask you, the listener. What is the best advice that another disabled person has given you? Let me know by email accessall@bbc.co.uk. You can send me a message on WhatsApp, either a voice or text, just pop the word Access before the message. You can send it to 0330 123 9480. We鈥檙e on X and on Instagram @麻豆社AccessAll. We can鈥檛 wait to hear from you and play some of your answers in on our 100th episode in a couple of weeks鈥� time.

听听听听听听听听听听听听听听听听听听听听听听听听听 That鈥檚 it for this episode of Access All. I hope you enjoyed our Easter treat with Tom Shakespeare. He鈥檚 certainly good for an old debate. Please subscribe to us on 麻豆社 Sounds or wherever you get your podcasts from. Click that little subscribe button and we will be down onto your device every single week. Chat to you next time. Bye bye.

[Trailer for Americast]

JUSTIN-听听听听听听听听听听听 So, Sarah, we鈥檝e been asked to put together a trailer for Americast. What do you think we should put in?

SARAH-听听听听听听听听听听听 Well is it too obvious to just say we鈥檒l be covering all the bigger stories that are coming out of America?

MALE-听听听听听听听听听听听听听 There鈥檚 a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don鈥檛 seem to matter anymore.

JUSTIN-听听听听听听听听听听听 I think that works but it鈥檚, well it鈥檚 not just that, is it? We need to talk as well about the undercover voters investigation, what鈥檚 happening online, what everyone鈥檚 getting in their social media feeds.

FEMALE-听听听听听听听听 What they allow us to see is what someone who has a specific set of views or is from a specific demographic or a specific place might be seeing on their feeds.

SARAH-听听听听听听听听听听听 And of course we鈥檝e also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.

FEMALE-听听听听听听听听 This is a great talking point for him in the court of public opinion, but it is not going to go very far in a court of law.

JUSTIN-听听听听听听听听听听听 And Americast of course isn鈥檛 just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?

FEMALE-听听听听听听听听 It kind of is in keeping with the conversations that we鈥檙e having in this country about race and colonialism and the legacy of those things.

SARAH-听听听听听听听听听听听 Yeah, as long as you include that I think that about covers what we do.

JUSTIN-听听听听听听听听听听听 And then all I need to say at the end is: Americast is a podcast from 麻豆社 News, and you can find it on 麻豆社 Sounds.

SARAH-听听听听听听听听听听听 Yeah, well you have just said that.

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