Tom shakespeare, welcome to hardtalk. Thank you. Its great to be here. Its great to have you here. Now, in your personal life, in your professional life, everything has been intertwined in terms of your campaigning work, your academic work. I just wonder whether you ever for a moment considered going into something entirely disconnected from your own personal circumstances, Something Like accountancy, law, geology. And you know what . There are short people, restricted growth people, in all of those professions. There are farmers, teachers, solicitors, everything, who are short. But i didnt go that way. And so, as a social scientist, ive always been interested in what ive experienced. And so, obviously, disability has to be top of the list. Let me ask you about growing up, because your family has its own history, which is important, i think, to talk about. Your grandfather, it seems, experienced a mutation, a Genetic Mutation. My father. So he was born in 1927. William shakespeare unfortunate name and his father, geoffrey, who was a Junior Minister in the liberal government the last time the liberals were in coalition was very worried about it, was very upset about it because suddenly his child was short. But the reason i mentioned the grandfather first is, isnt it the case that it was the grandfathers Genetic Mutation, which he was not aware of . Thats right. Which he then passed on to your father. His son. Exactly. You are quite right, stephen. Sorry. And, in fact, 60 of people who are born with my condition are born to average height parents. So anybody watching this programme who is themselves average height or even tall could have a short child. Obviously, myself, i have a 50 50 chance of having a short child, and indeed my father, he had an average height child and a fully affected child, me. But in average people, its very rare. Maybe one in 20,000 sperm its usually sperm go different, and therefore an achondroplasia child is born. Now, your profession is academic. You are an ethicist. You think about the very biggest and deepest ethical subjects facing us human beings. But this is also, of course, deeply personal. And youve been. Youve chosen to be candid and open about the very difficult emotional conversations youve had within your own family over the generations. Absolutely, yeah. Its difficult in a sense for me to get into this with you, because it seems so personal. But your own mother, for example, revealed, ithink, to you later in her life that had she had the option, had she known that you definitely had the condition of achondroplasia, she would have chosen to terminate. Yes. But back in the day, that was not possible, and i think its an illustration of the power we now have. So a lot of parents who are talking about genetics say, thank goodness we didnt have that power, because of course, power gives you responsibility. And you could say my life as an academic, a professor, my daughter who is a. Has been trained in social work, my son, whos a civil servant, they had good lives. They have children. They get on with life. So why does it matter that theyre short . And the question is what matters . Is it, as it were, biological differences, or is it the social inequalities . And im a sociologist, so i would always say it was a social inequality. I mean, you must have dwelt upon this in your own Decision Making about whether to have children. And, as it happens, i know you had children very young, so i guess you drew a conclusion very early in life, you know what . My life is absolutely worth living. And its whether or not the child i have has the same condition as me. Even if they do, that does not detract from my belief they will have a good life. Yes, they can have a good life. And the thing is that if you look in the streets of our cities, you find lots of miserable people. They dont have my Genetic Mutation potentially. Theyjust have hard lives, and we can do something about that. Were there societal pressures on you not to have children . Yes. Yes, there were. And i remember when my daughters name is ivy when her mother was pregnant, there was an expectation, they showed that that pregnancy was affected by achondroplasia. And i think there was an expectation she was born in 1988 there was an expectation we do the right thing and have a termination. And we went, yeah . You mean an expectation from the medical professionals around you . Yes. Notjust medical professionals. Friends, colleagues thought that it was the right thing to do. What about your own parents . Well, my father was very welcoming. He was a doctor. He was. He knew the genetics, but he also knew that it need make no difference. And so was my mother. I mean, shes been a fantastic Great Grandmother to my grandchild. But for her, maybe it was more questionable because she didnt have it. She didnt have the condition. My father did, so he knew it neednt be a problem. And my mother didnt. Doesn� t. So for her, maybe it was something you would want to avoid. You have, in your work on ethics, medical ethics, youve obviously looked at the history of the Science Behind the great genetic breakthroughs. Youve looked at the work of Crick And Watson and many others, and youve looked at their mindset. I just wonder whether you, reflecting on their work, feel that, alongside the brilliant science, there has been a mindset which has sought to somehow perfect the human being, the human species, in a way that sometimes is perhaps counterproductive. Yeah, they were people of their age, werent they . And i Metjames Watson and, you know, he said some incautious things, lets say. And in 1963, Francis Crick said in the future youd have to have a licence to have children. So they said, i think, problematic things. Now. Another one that i noted down, because i know that youve explored this territory, im sure youre familiar with this one. James watson, part of the crick watson team, he said seeing the bright side of disability is like seeing the bright side of poverty, ie it doesnt exist. Well, it does exist. And just as poor people make great music and great literature, so disabled people can make great everything you could name. So, you know, as ive said before, youre. Ive got a g to a transposition at point 380 of my fgfr3 gene. Weve got Three Billion base pairs, so ive got one spelling mistake out of Three Billion. So are you picturing all of the Three Billion . Because i might be cleverer, i might be more creative, i might be more friendly, i might be more confident, as well as being more short. And the person who is, as it were, average height, might be shy, miserable, in other words, not necessarily the citizen that wed like. Now, if we start saying they should be born, they should never have been born, were going to draw the line here, i think were going to not have some people who might contribute purely on the basis of really a very. Surely our thinking has developed. I mean, Crick And Watson were � 53. Surely our thinking has developed. And just listening to you and appreciating everything youve achieved is an important part, surely, of thinking about this whole topic. And yet you yourself wrestle with some of the difficult grey areas. For example, were now able to run Genetic Analysis of foetuses and indeed in vitro embryos. And we can tell very quickly whether they, for example, carry the down� s syndrome genetic material or indeed cystic fibrosis, some other diseases. And the decision oftentimes is taken to terminate that pregnancy or indeed to then destroy that embryo. Do you support that or do you think that is a mistake . I support a womans right to choose. So i would say i support selective termination. I support infertile couples getting that pgd, its called pre implantation genetic diagnosis. Its their right. However, i want them to make that decision knowing what its like to have down� s syndrome, achondroplasia, or cystic fibrosis, ie knowing that it need not be a limiting factor. It need not explain the whole of your life. You can live a very good life. But i suppose if we took to its logical conclusion the roll out of this genetic Diagnosis Capacity that we as humanity now have, we could, in the long run, theoretically at least, see achondroplasia eliminated. We could. How does that make you feel . Because you, your family, know just what a brilliant, positive life can be led with your condition. Would that, in a sense, devalue something . Would it be a mistake for humanity to do that . Well, theres lots of brilliant people that are never born, for a start. True. And secondly, i think that, if people, if we support a womans right to choose, if we say that couples are making extremely difficult decisions. Theres a researcher who said that this technology she was talking about amniocentesis, which is Pregnancy Monitoring this Technology Makes every woman into a bioethicist. They have to decide what makes life living, what they could cope with, what it would be like to walk down the street. What about the schools in the area . All of those questions. Its notjust me, its everybody. And i think that youre right. We can certainly screen. I dont want use of it overexaggerated. We can screen for a few things now. We might be able to screen for a lot more things in future. We might have a whole battery of tests to tell us whether this pregnancy should continue. Theres this notion that Barbara Rothman developed, the tentative pregnancy. That is to say a lady gets pregnant but she doesnt feel pregnant. She certainly doesnt tell everybody until shes had the test to show that shes not affected by some mutation which might lead to a serious illness. Getting back to the point about perfectibility and that sort of seductive idea, there is a Geneticist Working in the united states, razib khan, who has talked about the Second Age Of Eugenics being upon us. He, by the way, he sequenced his own sons entire genome in utero, and he went on to predict that people are going to be better looking, healthier, and smarter. What is not to like . He concluded. What would your response as an ethicist be . Well, for a start, its exaggerating. So we dont really know what makes you cleverer, more beautiful, or a better person. Thats the first thing. And secondly, you only have to look at the people in the last century who tried to make a better human hitler, stalin. These are not good people. And their attempts were misguided. They were notjust misguided because they had terrible science, they were also misguided because its the randomness, its the thrown ness of humans which makes them real. Icould. Im after this going to battersea. Im going to a Shopping Centre. I will see people in all their shapes and sizes. And they are. That is great. Imagine if they were all the same. If they were all, i dont know, the pursuit of intelligence or. Yeah, itd be a very, very boring place. And of course, many of them will have suffering in their lives, most of them, maybe all of them. But thats being human. Do you think too many people are still, whether they admit it or not, fearful of disability . Yes. Yes, definitely. Definitely. And all my life, ive been in situations with people where they think, 0h oh, what do we say . 0h oh, that could be me. 0h oh, that could be my daughter or my son. And i know that if im having a proper interaction with them, its because ive put them at their ease, because ive said, look, its ok. We can laugh. You dont have to worry about what youre going to say. We will be friends. That is really important because people, yeah, youre right, they are at heart still worried about disability, because theyve been told that disability is a terrible thing. I mean, i know that in your advocacy work, and you have worked in academia, but youve also worked at the united nations, youve worked Around The World in sort of Disability Rights and advocacy, i think your point comes to a Pretty Simple one, that in essence, what we call disability is primarily difference. Yeah. And we need to understand that if society creates the right conditions, that difference need not be a negative. Indeed, it can be a positive, but at least it can be a level Playing Field so people can be judged on their merits, not simply on whatever physical conditions they carry with them. Exactly. And i think we would all be happier if that was the case. We can see. I mean, illshow you in the Shopping Centre later. Everybody wants to be beautiful. Everybody wants to be young. But the fact is, they will all age, they will all die. And as they age, they will get more disability. You know, were talking so far about people born with illness and impairment, but over the life course, thats the main impact. Theres very, very few. Ive said Achondroplasia One In 20,000. But actually one in six or seven of the population is disabled, and most of them through ageing. But to get to this sort of social model which actually allows people with physical impairment to live their fullest lives, it requires enormous political will and it also requires very significant economic resource. And in your travels Around The World and your work in countries much less prosperous than the united kingdom, do you find that the political will and the resources are put in place . Well, i go to. Youre right, i go to africa, asia, and all the rest of it. And i say to people, dont make the mistakes we made. Dont exclude people in the way you build buildings, in the way you have buses or trains. Dont exclude the old, the young, the disabled, because they are your future. And. I mean, thats the advice. But whats the reality . Well, in curitiba in brazil, in sao paulo, you have a fully accessible bus rapid Transport System. In durban in south africa, they built a building, well, they were about to build a building, and then they redesigned it to be inclusive and they realised that would add about 0. 5 to the cost. So theyve known. And so you see the metro in delhi, in beijing, they know that the key to their prosperity is including people. Now, its true, these are very divided societies. Youve reported on them, you know well. But i want to say to them, dont make the mistakes we made. That phrase that youve used twice now implies that actually in some ways, the approach to disability and people with disability is actually a more negative experience in the developed west than it is in some of the other societies youve worked in. Well, ironically, you know, most of the, say, the charities or the ways of dealing with and supporting disabled people grew up in the 19th century. They were perfected with the Welfare State in the 20th century. And some of them are great, and im not knocking them. But overall. So, for example, we mostly go out to work. We depend on the Transport System, we depend on workplaces. Theyre not accessible. The Transport System has to be, as it were, retrofitted to be accessible. If we got it right from the start, then why would there be a problem . In our conversation at the beginning, we focused mostly on inherited conditions and on baseline genetics. But i guess the truth is that many people will experience what it means to be impaired or disabled, not at the beginning of their lives, but much later in their lives. And that old age brings a new level of disability to so many of us. May well bring it to me, to people i know very well. Yeah, everybody isjetting off. Its the Easter Weekend and half of them are going skiing and will come back injured because they will have broken collarbones, twisted ankles. Because its their one exercise a year and they put everything into it, and guess what . Theyll crash and theyll come back walking wounded. Now, im sorry for them, but we are all temporarily able bodied. We are all that far away from having a stroke or having a crash or having an illness. And the longer we live, the more impairment will hit us. Yeah, absolutely. Demographers talk about what they call rectangularisaton life curve. And it is that you live to a certain. 80 or 100 years, and then boom, youre dead at the end. And that would be perfect. But that is not what we have. We have, we go along and we decline. We decline, we decline, and then we die. And its that decline which is so expensive and which is so problematic. Which brings me to one area of impairment that im not sure youve spent so much time thinking and talking about, or at least ive missed it. That is not the physical, but the mental and the intellectual impairment. And often, of course, that can come with old age, it can come with dementia, alzheimers, and it afflicts so many people as they get older. Some of the things you are talking about that a society and a culture can do to make life so much better and easierfor disabled people, i can see it applying very clearly to physical impairment and disability, but how do you cope with profound mental and intellectual impairment . Well, ive worked a lot with people with dementia, and i think the same Disability Rights arguments apply to them. The same Age Friendly Cities arguments are put forward by the who. So all of the access that ive talked about helps older people, all of the, as it were, the simplicity. I have a smartphone, its gone wrong because i dropped it in water, but, you know, yeah, i have to press everything and it does everything. Now, if i had dementia, how complicated that would be. And thats why the japanese have a raku raku phone they developed. Its just got the numbers and the dial, and therefore its very simple. So the way we do things could be made easier. How important is representation as a part of the overall picture of normalising impairment and disability within a society . I mean, ive introduced