stephen sackur. we humans keep pushing the frontiers of bioscience. we now understand the molecular biology that makes us who we are. but we are still figuring out how to use that knowledge. should we screen all human embryos for genetic abnormalities? should we root out mutations? could we be sleepwalking into a new era of eugenics? my guest is the ethicist, disability rights activist 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. great to have you. in your personal life and 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 such as accountancy, law, geology? 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 have always been interested

in what i've experienced and 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. 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 him 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? 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 my father had an average height child and a fully affected child, me. but in average people it is very rare. maybe one in 20,000. the 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 biggest and deepest ethical subjects that face us human beings. but this is also 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 that is an illustration of the power we now have. many parents talking about genetics, they say "thank goodness we did not have the power," because power gives you responsibility, and you can say my life as an academic, a professor, my daughter who has been training in social work and 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 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 a lot 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 to not have children? 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 you do the right thing and have a termination. we said no. 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? my father was very welcoming, and 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 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 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 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 counter—productive? 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 you have explored this territory, i'm sure you're familiar james watson, part of the crick—watson team, said that seeing the bright side of disability is like seeing

the bright side of poverty. i.e it does not exist. it does exist. and just as poor people make great music and great literature, so disabled people 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 and 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 topic. but 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 quickly we can tell if they carry down syndrome genetic material or cystic fibrosis and some other diseases. the decision oftentimes is taken to terminate the pregnancy or 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. i support selective termination

and 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. i.e, to know it need not be a limiting factor. it need not explain the whole of your life. you can live a very good life. but if we took to its logical conclusion the rollout of this genetic diagnosis capacity that we as humanity now have, in the long run we could theoretically at least see achondroplasia eliminated. we could. how does that make you feel? you and your family knowjust 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 if we support a woman's right to choose and 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 and 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 over exaggerate, we can screen for a few things now and we might be able to screen for a lot more things in the future. we may have a whole battery of tests to tell us whether this pregnancy should continue.

there is a 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 may 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 spoken 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. 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." "uh—oh, that could be 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 had been told that disability is a terrible thing. 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 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 at the end of 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. weather for the remainder of this week is going to stay very unsettled. it's going to be a frustrating week to try and make plans for those who have children off for the easter break. there will be some sunny intervals, but spells of wind and rain at times, and as we head into the weekend, it will turn windier, but milder. in fact, in east anglia, we could see a high of 20 celsius — 68 fahrenheit — way above the average for this time of year in that area. bearthat in mind, but we are all starting to be aware that a warmer atmosphere means a wetter one, and you can see these areas of low pressure waiting in the wings to influence the weather story. so the first low is moving through on wednesday, bringing rain into northern ireland, southern scotland. behind it, there'll be a few

sharp showers to come, as well, so by the middle part of the afternoon, expect some sunny spells, perhaps more than we saw on tuesday, and temperatures will peak at highs of 15 celsius. some of the showers across northern england, though, could still be quite heavy, and that showery rain will start to drift out of northern ireland, improving here into central scotland. the far north and east of scotland will stay largely fine and dry, with some showers, but a north—easterly wind will make it feel noticeably colder, temperatures a good ten degrees down on where they are further south. so that low pulls away, another one is going to replace it on thursday, and then another significant low waiting in the wings for the start of the weekend. so on thursday, as that cloud and rain pushes its way steadily north through the night, it will be a mild start to thursday morning. we'll see showery outbreaks of rain pushing their way steadily eastwards throughout the day, so hopefully a slow improvement. but here's the next system already starting to show its hand across cornwall and south wales by the end of the day.

ahead of it, with some brightness, we'll see highs of 16 degrees. but that north—easterly wind once again pegging those temperatures back — in aberdeenshire, a high ofjust 16. then, as we move towards the end of the week, this low could bring some very windy weatherfor a time, gales on exposed coasts, a spell of heavy rain moving its way steadily north, and it's this that will tap into that pretty mild air all the way down from the south—west, starting to push its way across scotland now, as well. but don't expect anything prolonged, settled and sunny. there will continue to be showers, longer spells of rain. windy but warm.

live from london. this is bbc news. a powerful earthquake in taiwan causes a number of casualties and sparks tsunami warnings in neighbouring japan and the philippines. us presidentjoe biden says he's outraged by the deaths of seven international aid workers — three of whom were british — in an israeli air strike in gaza. and we look at the demographic

crisis facing an ageing population in china, with one in five people now over the age of 60. hello, i'm sally bundock. a powerful earthquake has hit the east coast of taiwan, with reports of at least one death and 50 people injured. the quake led to tsunami alerts in the philippines and japan. officials say flights were suspended at 0kinawa's main airport as a precautionary measure. the us geological survey says the quake measured 7.4 magnitude and also that the intensity of the shaking was very high. these are some recent pictures from hualien in taiwan — where buildings have collapsed and there are reports of power outages.