should we root out mutations? could we be sleepwalking into a new era of eugenics? well, my guest is the ethicist, disability rights advocate and writer tom shakespeare, who also happens to live with a genetic condition, achondroplasia, that has restricted his growth. should we embrace difference rather than use science to root it out? tom shakespeare,

welcome to hardtalk. thank you. it's great to be here. it's 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 didn't go that way. and so, as a social scientist, i've always been interested in what i've 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, isn't it the case that it was the grandfather's genetic mutation, which he was not aware of? that's 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, it's very rare. maybe one in 20,000 sperm —

it's 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 you've been... you've chosen to be candid and open about the very difficult emotional conversations you've had within your own family over the generations. absolutely, yeah. it's 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 it's an illustration of the power we now have. so a lot of parents who are talking about genetics say, "thank goodness we didn't 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, who's a civil servant, they had good lives. they have children. they get on with life. so why does it matter that they're short? and the question is what matters? is it, as it were, biological differences, or is it the social inequalities? and i'm 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 it's 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 don't 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 daughter's 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, she's been a fantastic great—grandmother to my grandchild. but for her, maybe it was more questionable because she didn't have it. she didn't have the condition. my father did, so he knew it needn't be a problem. and my mother didn't. ..doesn�*t. so for her, maybe it was something you would want to avoid. you have, in your work on ethics, medical ethics, you've obviously looked at the history of the science behind the great genetic breakthroughs. you've looked at the work of crick and watson and many others, and you've 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, weren't they? and i metjames watson and, you know, he said some incautious things, let's say. and in 1963, francis crick said in the future you'd 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 you've explored this territory, i'm sure you're 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 doesn't 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 i've said before, you're... i've got a g to a transposition at point 380 of my fgfr3 gene. we've got three billion base pairs, so i've 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 we'd like. now, if we start saying they should be born, they should never have been born, we're going to draw the line here, i think we're 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 you've 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, we're 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 woman's right to choose. so i would say i support selective termination. i support infertile couples getting that pgd, it's called — pre—implantation genetic diagnosis. it's their right. however, i want them to make that

decision knowing what it's 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, there's lots of brilliant people that are never born, for a start. true. and secondly, i think that, if people, if we support

a woman's right to choose, if we say that couples are making extremely difficult decisions... there's 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. it's notjust me, it's everybody. and i think that you're right. we can certainly screen... i don't 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. there's this notion that barbara rothman developed, the tentative pregnancy. that is to say a lady gets pregnant

but she doesn't feel pregnant. she certainly doesn't tell everybody until she's had the test to show that she's 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 son's 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, it's exaggerating. so we don't really know what makes you cleverer, more beautiful, or a better person. that's 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 it's the randomness, it's the thrown—ness of humans which makes them real. icould... i'm after this going to battersea. i'm 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 don't know, the pursuit of intelligence or... yeah, it'd 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 that's 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, i've 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 i'm having a proper interaction with them, it's because i've put them at their ease, because i've said, "look, it's ok. we can laugh. "you don't have to worry about what you're going to say. "we will be friends." that is really important because people, yeah, you're right, they are at heart still worried about disability, because they've been told that disability is a terrible thing. i mean, i know that in your advocacy work, and you have worked in academia, but you've also worked at the united nations, you've 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, i'llshow 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, we're talking so far about people born with illness and impairment, but over the life course, that's the main impact. there's very, very few... i've 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... you're right, i go to africa, asia, and all the rest of it. and i say to people, "don't make the mistakes we made. "don't exclude people in the way you build buildings, "in the way you have buses or trains. "don't exclude the old, the young, the disabled, "because they are your future." and... i mean, that's the advice. but what's 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 they've known... and so you see the metro in delhi, in beijing, they know

that the key to their prosperity is including people. now, it's true, these are very divided societies. you've reported on them, you know well. but i want to say to them, "don't make the mistakes we made." that phrase that you've 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 you've 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 i'm not knocking them. but overall... so, for example, we mostly go out to work. we depend on the transport system, we depend on workplaces. they're 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. it's the easter weekend and half of them are going skiing and will come back injured because they will have broken collarbones, twisted ankles. because it's their one exercise a year and they put everything into it, and guess what? they'll crash and they'll come back walking wounded. now, i'm 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, you're 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 it's that decline which is so expensive and which is so problematic. which brings me to one area of impairment that i'm not sure you've spent so much time thinking and talking about, or at least i've 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, alzheimer's, 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, i've 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 i've talked about helps older people, all of the, as it were, the simplicity... i have a smartphone, it's 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 that's why the japanese have a raku—raku phone they developed. it's just got the numbers

and the dial, and therefore it's 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, i've introduced you as an ethicist, also a disability rights advocate, but you're all sorts of things. you've just written this novel. you've, i know in your past, been a stand—up comedian, you've been a cultural commentator, you've done all sorts of different things. how important is it that we all see you in society doing your thing? a great success, but not focused on the fact, oh, you're disabled. exactly. and this book that you've brandished is called the ha—ha and the hero of it, fred, is disabled, is paralysed like me, in a wheelchair like me. but he drives a car. he's a solicitor. he's got a flat, all accessible, and he's got friends, and therefore he's included. and like me, he went to a stately home, in fact,

in suffolk, and he's having his birthday weekend. and it's what i was told when i was learning to write was your point has to be buried. if you hit people over the head with your point, they're not going to enjoy it. but if you take your point, you bury it in a hopefully funny, entertaining story, maybe they'll think of it. and my point in this book is really... ..life can be normal. now, we've talked science, we've talked ethics, we've talked the realities of daily life. when you consider the span of your own life and your own family history, do you think that as our species gets ever more knowledgeable and scientifically capable, do you think we're also becoming wiser? well, i hope so, but there's no evidence of it. if you look in the world today, you know better than i do, there's conflicts in the middle east. there's, you know, all sorts of... there's a dictator in russia. there's all sorts of problems in the world.

so we're not necessarily any better than we were, but we have the potential to be better. we know what went wrong. we know what mistakes we've made. and i think we can build a society. i mean, in my... i was the first in my year... it was the first year at my college that they took women. they had had no women since 13117, and they changed that. and, of course, it's a better place as a result. and that sort of massive change, you could talk about gender, you could talk about sexuality, you could talk about race, is the sort of change we want to see with disability. tom shakespeare, it's been a pleasure. thank you for being on hardtalk. thank you.

hello. the weather will be throwing all sorts at us over the next few days. some wet weather, some warm weather and some windy weather — particularly driven by storm kathleen. a storm named by the irish weather service for impacts it will have in the republic of ireland over the weekend. but for northern and western parts of the uk it will bring gales and the risk of disruption. here is storm kathleen developing, still well away to the south—west of our shores. but low pressure already in charge of the scene for friday — rain and snow across scotland. that tending to peter out, but more rain pushing into southern scotland later. for northern ireland, bands of showery rain with sunny spells in between. england and wales, seeing a day of sunny spells and showers. it will be quite windy, particularly around western and southern coasts, but pretty warm — 15 degrees for belfast, 18 for norwich. still cold in the north of scotland, but it will turn milder here as we go through friday night.

further bands of heavy rain driving north was turning increasingly windy around some western parts, but a very mild start to the weekend. down towards the south, 12 or 13 degrees first thing on saturday. so storm kathleen, this deep area of low pressure well to the west of us, but coming close enough to bring some very strong winds. and with those winds coming from the south, well, they will be pulling some really warm air into the mix. it is likely that saturday will be the warmest day of the year so far. with some outbreaks of rain moving northwards across scotland, showers following on behind, some decent sunny gaps in between, but i think it is the strength of the wind that could cause some issues, especially around western coast. we'll see gusts of 50, 60, maybe 70 miles per hour in exposed spots. so that could cause some travel disruption, maybe a little bit of damage. temperature wise, though — well, values up to 20 or 21 degrees in eastern england and certainly

much, much warmer than it has been across the north of scotland. now, storm kathleen, this area of low pressure continuing to track to the north—west of us as we move through saturday night into sunday. still a lot of isobars squeezing together on this chart for sunday, so still very windy. the strongest winds up towards the north west of scotland where there will be gales. yes, there'll be some sunny spells, but there'll be some heavy perhaps thundery showers and it's going to be a windy day for all of us. not quite as warm on sunday. temperatures between ten and 17 degrees.

welcome to newsday, reporting live from singapore, i'm steve lai. the headlines. president biden tells benjamin netanyahu in a call that there are limits to us support, as the family of an aid worker killed in an israeli air strike pay tribute. there is definitely a hole in our hearts, a hole in my heart. when i first heard the news of

jacob's death i was crushed and shattered. jacob's death i was crushed and shattered-— shattered. what's up messages sent to politicians _ shattered. what's up messages sent to politicians in _ shattered. what's up messages sent to politicians in west - sent to politicians in west minister in an mp reportedly admits giving the numbers with up welcome to newsday, reporting live from singapore, i'm steve lai. the headlines. and the remarkable man from wales, who saved a town hall from fire in world war ii, is honoured on his 100th birthday. welcome to bbc news. broadcasting to viewers in the uk and around the world. we begin with the israel—gaza war. in a notable hardening of tone, president biden has told

israel's prime minister, benjamin netanyahu, that washington's support for his war in gaza will depend