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	TX: 02.03.09 - Disabled Leaders - Tom Shakespeare PRESENTER: PETER WHITE

	Downloaded from www.bbc.co.uk/radio4 THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 麻豆约拍 CANNOT VOUCH FOR ITS COMPLETE ACCURACY. WHITE Now a one time wannabe stand up, a university academic and a man who's been described as the maverick of the disability world. Dr Tom Shakespeare, born with restricted growth, is one of nine people featured in a book called Defying Disability - the Lives and Legacies of Nine Disabled Leaders. All week we're going to be speaking to some of the people picked out by Mary Wilkinson, the author, who you may have heard on Friday's programme. Dr Shakespeare is a controversial figure, not least for daring to question the social model of disability, which for 30 years has been the linchpin of the rights movement. To sum it up it says people are not disabled by their medical conditions but by the restrictions and barriers put on them by society. So I began by asking Tom if he likes being described as the maverick of the disability world. SHAKESPEARE Oh yes I love it but I don't think I'm alone in that, I think the disability world is full of mavericks and so it should be. WHITE Weren't you though a little bit biting the hand that fed you, after all it was that movement, based on the social model, that kind of nurtured your early career in many ways? SHAKESPEARE No I don't think that's true at all, I mean I got a first class degree from the University of Cambridge, so without sounding smug I'd have had a career with or without the disability movement. I think that it's not - oh I don't know - traitorous or treacherous or ungrateful to want to have a debate and that's all I've ever wanted. WHITE Can we talk just a bit about your own background because your father had the same condition as you of restricted growth, how important was that to your development, to have that sort of positive role model so close to hand? SHAKESPEARE He in his life he was a very successful doctor, a GP, he showed that you could be a disabled person and just fit in, just be like everybody else. Now you know certainly at the beginning of my career I wanted to be a radical, I wanted to stand out and draw attention to myself but as time has gone on I've recognised that most disabled people just want to be in the mainstream, they don't want to draw attention to their disability or to their oppression, they just want to get on with it and that's their right. WHITE You've always been prepared to put yourself out on the barricades. I mean you spent five years, when you were a good deal younger, trying to build up a career as a stand up, as a comedian, are you someone who likes to perform to a crowd? SHAKESPEARE Yeah, I mean think that anybody who knows me would tell you that I was a communicator and some of them would say that you know I was too big for my boots - that's certainly what people said at school. So yeah I can speak in sentences, I've got a good mind and I think that that's a privilege and that I should use it to try and promote the issues that I care about. WHITE I heard David Walliams on a recent Desert Island Discs say that comedy in a way was a way of controlling the way that people laughed at you, which I thought was quite an interesting way of putting it, does that speak to your condition? SHAKESPEARE Absolutely it does. I'm - you know I have restricted growth, only the other day I was sitting on a train and this little kid was saying - oh look at that guy with the big head. It happens all the time. And I think that people with restricted growth, in particular, learn to use humour to as it were sort of turn it back on the people that are making fun of you or to put people at their ease. So I think I was never a brilliant stand up comic, sadly, I think my lectures were always quite funny and my stand up was always a bit too much like a lecture. But humour is obviously in the repertoire of many, many disabled people, whether they perform on a stage or not. WHITE The other area where you made yourself very visible and became very interested is the whole issue of sexual politics and you've discussed in many ways your ambivalence, if I can put it that way, sexually, do you think that was something that needed to be done across disability? SHAKESPEARE I certainly don't think anybody needed to know about my sexuality but I do think that disabled people needed to talk about sex and relationships. After all it's so important to all human beings I think and particularly for disabled people. We've talked about jobs, we've talked about housing, we've talked about transport and rights but very rarely have we talked about our needs for love and indeed for sex. I mean we're human beings and in order to get it on the record we went out and interviewed 44 disabled people who, yeah - Good, Bad and Ugly we called it - they had good times, bad times, some of them had experienced sexual abuse. But what we tried to say was this is a right, this is a sexual right. And for us the sort of strap line or the slogan from the research was the issue of disabled sexuality is not how to do it but who to do it with. Lots of disabled people are isolated, they don't have enough friends let alone partners and I think this is a real challenge for us in the 21st Century, enabling disabled people to be connected, to have friends and to have relationships. WHITE Another aspect of disability politics that you've chosen to question are attitudes to genetics, which has also got you into quite a lot of trouble from time to time. A lot of disabled people are highly suspicious, they have fears over eugenics, obviously disabled embryos being screened out and so and so. You've suggested these fears are exaggerated, if I've understood you correctly. SHAKESPEARE I think certainly in the more extreme form the fears are exaggerated. I think we've got every reason to be cautious and to be anxious but when we start sort of saying that geneticists are like Nazis or whatever we're really going over the top. And for me, my position starts with a woman's right to choose, and having accepted that obviously if a pregnancy is affected by disability that's a relevant issue in her choice. You know I want us to welcome disabled people in the world, but I don't want to start saying you can and cannot do this. Within the limits of the law women must have a choice and it's a really difficult decision. In my work I've tried to give information about what disability's really like because we need to know what disability is really like for those decisions to be wise decisions. WHITE And in the context of the susceptibilities of the disability world, if you like, you accepted a job with an institution, the whole role of which was to push the barriers really of genetic research, provocative? SHAKESPEARE My job was to promote research and debate on the social and ethical aspects of genetics. Now nobody can disagree with the need to discuss this stuff, that's what I was doing, I was not promoting genetics. That's what it was seen as by some disability activists. But I would like to say, and Mary says that I contributed to the disability community taking genetics seriously and becoming educated in genetics. So I think that's something worth celebrating. WHITE You've recently become more physically disabled with problems which spring from your original condition, can you just explain what's happened? SHAKESPEARE Yeah I mean on August 20th 2008 I became spinal cord injured, I was cycling to work on the Monday and by the Wednesday I'd lost the use of my left leg and by the Friday I'd lost the use of my right leg and I couldn't pee and I've been in a wheelchair ever since. And yeah it was a big change, big challenge. I knew it was possible but obviously you never expect that sort of injury. WHITE Possible because it is an effect of the original causes of your restricted growth? SHAKESPEARE That's right, yeah. I mean restricted growth also involves pressure on the spine and one of the things that I've tried to demonstrate in my research is that having restricted growth is not just about being small, it's also being about having a whole range of impairment issues. WHITE But I mean it's interesting - and I'm sorry if that sounds a bit cold blooded - but some of the criticism you took when you were talking about things about the social model said oh well he's of restricted growth but he hasn't got health problems and he doesn't really know what it's like. I'm interested to know whether, now that you're going through that experience, you see any truth in that or what effect it's having on your thinking. SHAKESPEARE No, I mean to be honest it hasn't changed my thinking at all. I always had backache, now that I have become paralysed and a wheelchair user it hasn't changed my views at all. I don't want to be a wheelchair user. It's an issue for me, I've been through rehabilitation and I've had - I can't pee without a catheter, I don't want to go into any more details, but yes this is a hassle. Now it's not a tragedy, it's not the end of my life but it does make my life a lot harder, that's all I'm saying about it. WHITE Is it likely to be a permanent condition or could it change? SHAKESPEARE Well it could change - I go to physio, I was at physio this morning, you know, I'm now twitching my bottom, I have my glutial muscles back again, so I'm very happy about that. WHITE You also produced two children who you knew what the risk was of their possibly having the same condition as you, was that something you did without really worrying about the consequences? SHAKESPEARE I was in my early 20s when my children were conceived and you know I was having a good time and no I didn't see it as a problem at all. And I still don't. And I think disabled people have every right to have children. And if you look - and my kids are both at university, one's at Cambridge, one's at Edinburgh, they both got very good A Level results, they're both very happy, they both have every possibility of a good life. So I don't think that's any cause for concern, I think it's a cause for celebration, I'm very, very proud of them and happy that I've done that. WHITE Are you - has that attitude changed at all because as you grow older you're realising some of the physical side effects of your condition, which presumably they may face too? SHAKESPEARE Yeah, I mean yes to be entirely honest yes my early sort of exuberance or naivety has been tempered by more of a sort of concern. Yeah I do worry about my children, we all worry about our children but you know anything could happen to any person in the world and achondroplasia is certainly not the worst of it. WHITE The title of the book Defining Disability - the Legacy of Nine Disabled Leaders, what would you like your legacy to be? SHAKESPEARE I was a bit worried about that, I'm only 42 so I hope I have a few 20 years left. Anyway my legacy: I hope that people talk about disability in the mainstream, that you don't have to be a separatist, you don't have to be a tub thumbing 24/7 activist to believe that you have rights, you should have opportunities and for this to be taken seriously by everybody, we've got to mainstream disability. Back to the Transcripts homepage Back to the You and Yours homepage The 麻豆约拍 is not responsible for external websites

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