happens to live with a genetic condition, achondroplasia, which 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. now, in your personal life and your professional life, everything has been intertwined in terms of your campaigning work, your academic work. ijust wonder whether

you ever, for a moment, considered going into something entirely disconnected from your own personal circumstances? something like accountancy, law, geology? you know what, there are short people, restricted growth people in all of those professions. there are farmers, teachers, solicitors, everything. but i did not go that way. so as a social scientist, i've always been interested in what others experience and so obviously disability has to be top of the list. let me ask you about growing up. your family has its own history, which is important to talk about, i think. 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 and was very upset about it because suddenly

his child was short. the reason i mention the grandfather first because isn't it the case that it was the grandfather's genetic mutation which he was not aware of? that is right. which he then passed on to your father, his son? exactly, you are quite right, stephen, sorry. in fact, 60% of people who are born with my condition are born to average height parents. anybody who watches this programme who is themselves average height or even tall could have a short child. obviously, myself, i have a 50—50 chance of a short child and, indeed, my father had an average height child and a fully affected child — me. but in average people, it is very rare. maybei in 20,000. sperm — it's usually sperm — go different and, therefore,

an achondroplasia child is born. you are an academic, and ethicist and you think about the very biggest and deepest ethical subjects that face us human beings. but this is also of course deeply personal. you have chosen to be candid and open about the very difficult emotional conversations you have had within your own family over the generations. absolutely, yeah. it is difficult, in a sense, for me to get into this with you because it seemed so personal, but your own mother, for example, revealed 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, they say, "thank goodness we did not have the power,"

because of course power gives you responsibility, and you can say my life as an academic, a professor, my daughter who has been training in social work, my son, a civil servant, they have good lives. they have children, they get on with life. so, why does it matter that they are short? the question is — what matters? is it, as it were, biological differences or is it the social inequalities? i'm a sociologist, so i always say it was social inequality. 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 whether or not the child i have has the same "condition as me, even if they do, that does not detract "from my belief that 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 dna 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. i remember when my daughter, 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 that we do the right thing and have a termination. we went. . .yeah? that was from the medical professionals around you? yes. notjust the medical profession. friends, colleagues thought it was the right thing to do. what about your own parents? well, my father was very welcoming — he was a doctor and he knew the genetics, but he also knew that it

need make no difference and so did my mother. she has been a fantastic great—grandmother to my grandchild. but for her, maybe it was more questionable because she did not have it. she did not have the condition. my father did. so he knew it needn't be a problem and my mother didn't. ..doesn�*t and so for her maybe it was something you would want to avoid. you have, in your work on ethics, medical ethics, you have 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 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 counter—productive? yeah, they were people of their age, weren't they? i have metjames watson and he said some incautious things, let's say. in 1963, frances crick said in the future, you'd have to have a license to have children. i think they said problematic things. another one that i noted down, and i know that you have explored this territory, i'm sure you're familiar that james watson, part of the crick—watson team, said that seeing the bright side of disability is like seeing the bright side of poverty, ie, it does not exist. it does exist. and just as poor people make great music and great literature, so disabled people can make great — everything you can name. as i have said before, i have a g—to—a transposition at point 380 of my fgrf3 gene. we have 3 billion base pairs so i have one spelling mistake

out of 3 billion. so, are you picturing all of the 3 billion? because i might be cleverer. i might be more creative. i might be more friendly or 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 would like. if we start saying that they should be born and they should never have been born, we are going to draw the line here, i think we are going to not have some people who might contribute purely on the basis of the... surely, our thinking has developed. crick and watson wrote in �*53. surely, our thinking has developed. and just listening to you and appreciating everything you have 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 are now able to run genetic analysis

of foetuses and, indeed, in vitro embryos and we can tell very quickly if they carry down syndrome genetic material or, indeed, cystic fibrosis, some other diseases. 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, obviously, isupport selective termination, i support infertile couples getting that — pgd, it's called — preimplantation genetic diagnosis. it is their right. however, i want them to make that decision knowing what it is like to have down 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 rollout 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. and how does that make you feel? because you, your family know just what a brilliant and 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? there are lots of brilliant people who were never born, for a start. true. and, secondly, i think that 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 the 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 worth living and what they can cope with, what it will be like to walk down the street, what about the schools in the area? all of those questions. it is notjust me. it is everybody. and i think that you are right, we can certainly screen. i don't want to overexaggerate, we can screen for a few things now, we might be able to screen for a lot more things in the future. we might have a whole battery of tests to tell us whether this pregnancy should continue. there is this notion that barbara rothman developed, the �*tentative pregnancy�*. that is to say a lady gets pregnant, but she does not feel pregnant, she certainly does not tell everybody until she has had the test to show that she is 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. as an ethicist, what would your response be? he is exaggerating, to start with. we do not really know what makes you clever or more beautiful or a better person. that is the first thing. the second thing, 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 is the randomness of humans which makes them real. after this, i am going to battersea and i will go to the shopping centre and i will see people in all their shapes and sizes and that is great and imagine if they were all the same. if they were all, i don't know, it would be a very boring place and of course many of them will have suffering in their lives. most of them. maybe all of them. but that is being human. do you think too many people are still, whether they admit it or not, fearful of disability? yes. definitely. and all my life i have been in situations with people where they think, "uh—oh, what do we say?" "uh—oh, that could be could be me." my daughter or my son." and i know that if i am having a proper interaction with them, it is because i put them at their ease because i say,

"look, it's ok, we can laugh, you do not have to worry "about what you are going to say. "we will be friends." that is really important. because people, yeah, you are right. at heart, they are still worried about disability because they have been told that disability is a terrible thing. yeah, i know that in your advocacy work, and you have worked in academia, but you have also worked at the united nations and around the world in disability rights and advocacy. your point comes to a pretty simple one, in essence, that 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 and not simply on whatever physical conditions they carry with them. exactly. and i think we would all be happier if that were the case. we can see — i'll show you in the shopping centre later — everybody wants to be beautiful, everybody wants to be young. but the fact is, they will all age and they will all die. and as they age they will get more disability. so far we are talking about people born with illness and impairment, but over the life course that is the main impact. there are very few, one in 20,000 have achondroplasia, but one in six or seven of the population is disabled and most of them through ageing. but to get to this 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?

you are right. i go to africa, i go to asia and i say to people, "do not make the mistakes we made. "do not exclude people in the way you build a building. "in the way you have buses or trains. "do not exclude the old, the young, the disabled, "because they are your future." that is the advice but what is the reality? in brazil, in sao paulo you have a fully accessible bus rapid transport system. in durban, in south africa they built a building, they were about to build a building and then they redesigned it to be inclusive and realised that it would add about 0.5% to the price. so they know and you see the metro in delhi, in beijing. they know that the key to their prosperity is including people. it is true these are very divided societies. you've reported on, you know well. but i want to say to them,

"do not make the mistakes we made." that phrase that you've now used twice 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 have worked in. ironically, most of the charities or 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. some are great and i am not knocking them, but overall... for example, mostly we go out to work and we depend on a transport system.

we depend on workplaces. they are 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 life, but much later in their life and old age brings a level of disability to many of us. to me, or to people i know very well. absolutely. everyone is jetting off to the easter weekend and half are going skiing and will come back injured. because they will have a broken collarbone, a twisted ankle. because it is their one exercise a year and they put everything into it and, guess what, they crash and come back the walking wounded. i am 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. absolutely.

demographers talk about what they call rectangularisation of life curves, and that is that you live to a certain age, 80 or 100 years, and then boom, you are dead at the end. and that would be perfect but that is not what we have. we go along and we decline and we decline and then we die and it is the decline which is so expensive and so problematic. which brings me to one area of impairment that i'm not sure you have spent so much time thinking and talking about or at least i have missed it, that is, not the physical but the mental and intellectual impairment. often of course that can come with old age or dementia, alzheimer's, and it affects so many people as they get older. some of the things you are talking about that a society and the culture can do to make life so much better and easier for disabled people, i can see it applying clearly to physical impairment and disability, but how do

you cope with profound mental and intellectual impairment? i have 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 spoken about helps older people, all of the...as it were, the simplicity, the smart phone — it's gone wrong because i dropped it in water. i have to press everything and it does everything. now, if i had dementia, how complicated that would that be. that is why the japanese have developed a phone, itjust has numbers and the dial and therefore it is 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 have introduced you as an ethicist and disability rights advocate, but you are all sorts of things. you just wrote a novel. in your past you have been a stand—up comedian. you have been a cultural commentator. you have 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 that, "oh, you are disabled." exactly. this book that you've brandished, it's called the ha—ha, the hero of it, fred, is disabled, he is paralysed, in a wheelchair like me but he drives a car, he is a solicitor, he has a flat. all accessible. and he has friends. and therefore, he is included. and like me he went to a stately home in suffolk and he is having his birthday weekend, and when i was learning to write what i was told is that your point has to be buried. if you hit people over the head with your point,

they won't enjoy it, but if you take your point and bury it in a hopefully funny story, maybe they will think of it. my point in this book is really that life can be normal. we've talked science and ethics and the realities of daily life. when you consider the span of your own life and your own family history, do you think as our species gets evermore knowledgeable and scientifically capable, do you think we are also becoming wiser? i hope so, but there is no evidence. if you look at the world today, you know better than i do that there is conflict in the middle east, a dictator in russia, all sorts of problems in the world. so we are 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 have made. i think we can build a society.

i was the first in my year, it was the first year of my college that they took women. they had no women since 1347 and they changed that. and it is a better place as a result. that sort of massive change, you could talk about gender or sexuality, you could talk about race, is the sort of change we want to see with disability. tom shakespeare, it has been a pleasure. thank you for being on hardtalk. thank you. hello there. it certainly was a windy weekend,

but the winds are going to be a lot lighter on monday, and that's because storm kathleen to the north of scotland is weakening and moving away. but we are seeing more cloud coming in from the south across england and wales and this area of low pressure is taking a bit of rain northwards as well. clear skies, scotland and northern ireland will mean a chilly start here. we've got the early rain in north wales and northern england moving northwards and largely petering out across southern scotland. later in the day we'll see some rain arriving in northern ireland. this rain in the south—west of england pushes back into wales and some showery bursts of rain arrive in southern england and later into the midlands. but ahead of that, we'll get some sunshine for a while in the midlands and eastern england, so temperatures back up to a healthy 17 or 18 degrees. now, if you're hoping to get a view of the partial solar eclipse in northern and western parts of the uk — well, it could be spoiled by all this cloud that's coming in and the outbreaks of rain as well. now we've seen the back of one area of low pressure, but there's another one arriving.

this is one that's going to sit around overnight and into tuesday and it's going to take the rain northwards all the way into scotland by tuesday morning. the rain curving back into england and wales around the low, turning to drift away eastwards into the north sea, allowing brighter but more showery weather to come into southern and western areas and the winds will be picking up as well. we're looking at gale force winds around some southern and western coasts of england and wales. and with the winds picking up and that cloud and showery rain around, temperatures are going to be a lot lower. it's going to be a cooler day on tuesday. our top temperatures are only 11 or 12 degrees, and that's because we're seeing this north—westerly wind picking up on tuesday into tuesday night. but i don't think that cool air is going to last long. out in the atlantic there is milder air and that's following this weather front, which is going to bring cloud and rain in from the west. ahead of that, though, eastern areas starting dry on wednesday with some early sunshine, but soon clouding over. rain in the west pushes eastwards, heavy rain for a while in northern ireland, the hills and north—west england

and also into scotland. lighter rain as you head further south across the uk. but it's gradually getting a little bit warmer on wednesday despite all that cloud — 1a, maybe 15 degrees. but the wind direction is changing — we're getting a south—westerly wind. that is going to bring warmer weather back across the whole of the uk towards the end of the week and temperatures could be back up to around 20 celsius at best.

welcome to newsday. reporting live from singapore, i'm steve lai. the headlines. israel says it has withdrawn nearly all ground troops from southern gaza to regroup for the next stage of war. six months on since the attacks, tens of thousands rally injerusalem and other cities to call on the government to reach a deal to free the hostages. hopes for a new round of ceasefire talks amid warnings of catastrophic levels of hunger in gaza and an imminent famine. police launch a murder investigation and name a man wanted in connection with the stabbing of a woman in bradford city centre

who was with her baby who was in a pram. as millions prepare for the solar eclipse in north america, we look at how to safely watch the total blackout. live from our studio in singapore — this is bbc news. it's newsday. clear clear it's seven in the morning in singapore, and 2am injerusalem, where it appears israel is moving to a new phase of its military operation. the israeli military says it has withdrawn all its ground troops, apart from one brigade from southern gaza to focus on other offensives including rafah. sunday marked six months since hamas gunmen stormed into southern israel, killing 1,200 people and kidnapping more than 250. israeli prime minister benjamin netanyahu promised a �*mighty vengeance�* following the attacks in october. more than 33,000 gazans have been killed since then