shakespeare, _ science to rooted out? tom shakespeare, welcome - science to rooted out? tom shakespeare, welcome to l shakespeare, welcome to hardtalk. shakespeare, welcome to hardtalk— shakespeare, welcome to hardtalk. ., ~ a, ., hardtalk. thank you, great to be here. great _ hardtalk. thank you, great to be here. great to _ hardtalk. thank you, great to be here. great to have - hardtalk. thank you, great to be here. great to have you. in| 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. ijust 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 west among accountancy, law, geology? there are short people, restricted growth people, restricted growth people in all of those professions. farmers, teachers, solicitors, everything. buti did not go that way. so as a social scientist have always been interested in what are the experiences 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. which is important to talk about, ithink. your grandfather, it seems experienced a mutation, a genetic mutation. my my father. he was born in 1927. william shakespeare, unfortunate name. and his father, geoffrey, a junior minister in the liberal government the last time the liberals were in coalition, was very worried about him and very upset about it because suddenly his child was shorter. i mention the grandfather first because not the case that it was the grandfather's genetic mutation which he was not aware of. . , which mutation which he was not aware of-_ which he - of. that is right. which he then passed _ of. that is right. which he then passed on _ of. that is right. which he then passed on to - of. that is right. which he then passed on to your i of. that is right. which he - then passed on to your father, his son? ., . his son? you are quite right. 60% of peeple _ his son? you are quite right. 60% of people who - his son? you are quite right. 60% of people who are - his son? you are quite right. 6096 of people who are born| his son? you are quite right. - 6096 of people who are born with 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 told could have a short child. obviously myself, i have a 50-50 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, usually sperm, growing different and there for a was born. ., . . different and there for a was born. ., ., ., ., . ., . different and there for a was born. ., ., ., . ., born. you are an academic, and ethicist and _ born. you are an academic, and ethicist and you _ born. you are an academic, and ethicist and you think— born. you are an academic, and ethicist and you think about - ethicist and you think about the biggest and deepest ethical subjects that face human beings. also this is 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. 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 would definitely had the condition of anchondroplasia she would have chosen to terminate.— chosen to terminate. yes. but back in the — chosen to terminate. yes. but back in the day _ chosen to terminate. yes. but back in the day that _ chosen to terminate. yes. but back in the day that was - chosen to terminate. yes. but back in the day that was not . back in the day that was not possible and that is an illustration of the power we now have. many parents were 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 welfare and my son, 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 biological differences or the social inequalities? so i always said it was social inequality. always said it was social inequality-— always said it was social inequality. always said it was social ineuuali . ., , ., inequality. you must have dwelt u on this inequality. you must have dwelt upon this in _ inequality. you must have dwelt upon this in your _ inequality. you must have dwelt upon this in your own _ 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 draw a conclusion very early in life. the 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. my belief that they will have a aood life. , , u, my belief that they will have a aood life. , , u, . my belief that they will have a aood life. , , h, ., ., good life. yes. they can have a aood good life. yes. they can have a good life- _ good life. yes. they can have a good life. and _ good life. yes. they can have a good life. and the _ good life. yes. they can have a good life. and the thing - good life. yes. they can have a good life. and the thing is - good life. and the thing is that if you look on the streets of our cities you find a lot of miserable people. they do not have my mutation, potentially, theyjust have a hard life and we can do something about that. whether societal pressures on you to not have children? yes there were- — you to not have children? yes there were. i— you to not have children? yes there were. i rememberwhen you to not have children? ie:;1 there were. i rememberwhen my there were. i remember when my daughter, when her mother was pregnant, there was an expectation, they showed the pregnancy was affected by achondroplasia and there was an expectation. she was born in 1988, the expectation that you do the wrong thing and have a termination. we do the wrong thing and have a termination.— termination. we said no. that was from _ termination. we said no. that was from the _ termination. we said no. that was from the medical- was from the medical professionals around you? yes. not 'ust professionals around you? yes. not just the _ professionals around you? yes. notjust the medical _ notjust the medical profession. friends thought it was the right thing to do. what was the right thing to do. what about your _ was the right thing to do. what about your own _ was the right thing to do. what about your own parents? - was the right thing to do. what about your own parents? my i about your own parents? my father was — about your own parents? my father was a _ about your own parents? iji father was a doctor and about your own parents? m1 father 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 she did not have the condition. my father did. so he knew it was a problem and my mother didn't and doesn't so for her maybe it was something you would want to avoid. in maybe it was something you would want to avoid.- would want to avoid. in your work on _ would want to avoid. in your work on ethics, _ would want to avoid. in your work on ethics, medical- would want to avoid. in your l work on ethics, medical ethics you have looked at the history of the science behind the great genetic x—rays. you looked at the work of crick and watson and many others and at their mindset. i wonder whether you reflect on their work and feel that alongside the brilliant science there has been a mindset that has sought to somehow perfect the human being, the human species in a way that sometimes is counter—productive? way that sometimes is counter-productive? they were eo - le counter-productive? they were --eole of counter-productive? they were people of my — counter-productive? they were people of my age _ counter-productive? they were people of my age wednesday. | counter-productive? they were people of my age wednesday. i have read watson and he said some incautious things, let's say. in 1963 fences crick said you would need a license to have children. i you would need a license to have children.— have children. i think they said problematic - have children. i think they said problematic things. l said problematic things. another one that i noted down and i know you have explored this territory. james watson said that seeing the bright side of disability is like seeing the bright side of poverty. i.e. it does not exist. ., , , ~ , exist. it does exist. and 'ust as oor exist. it does exist. and 'ust as poor people fl exist. it does exist. and 'ust as poor people make h exist. it does exist. and just as poor people make great l exist. it does exist. and just - as poor people make great music and great literature so do disabled people make great, everything you can name. as i have said before,... . we have 3 billion base pairs and i have one spelling mistake out of 3 billion. are you picturing all the 3 billion? i might be clever. 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 ab shy, miserable, in other words not necessarily a citizen that we would like. if we start saying that they should be born and they should never be born we are going to draw the line here, i think we are going to not have some people who may contribute purely on the basis of the thinking that has developed. crick and watson wrote 53. .. developed. crick and watson wrote 53... . developed. crick and watson wrote 53- - -— wrote 53... . and 'ust listeningfi wrote 53... . and 'ust listening to i wrote 53... . and 'ust listening to you b wrote 53... . andjust listening to you and l 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 in vitro embryos and quickly we can tell if they have down syndrome or cystic fibrosis and some other diseases. the decision that oftentimes is taken to terminate the pregnancy or two then destroy the embryo. do you support that i do think that is a mistake? i support a woman's right to choose. i support selective termination and i support couples getting the preimplantation genetic diagnosis. that is their right. but i want them to make that decision knowing what it is like to have down syndrome, achondroplasia or cystic fibrosis. 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. you can live a very good life. �* ., ., ~ ., ., life. but if we took to a loical life. but if we took to a logical conclusion - life. but if we took to a logical conclusion the l life. but if we took to a - 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. ., ., , . see achondroplasia eliminated. wecould. ., ., we could. how does that make ou we could. how does that make you feel? _ we could. how does that make you feel? you _ we could. how does that make you feel? you and _ we could. how does that make you feel? you and your- we could. how does that make you feel? you and your family | you feel? you and your family knowjust you feel? you and 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 a million -- — humanity to do that? there are a million -- many _ humanity to do that? there are a million -- many brilliant - a million —— many brilliant people who were never born, for a start. through. and if we support a woman's right to choose and say that couples are making extremely difficult decisions, one researcher said that the technology, the pregnancy monitoring, makes every woman into a bioethicist. they have to decide what makes life living in what they can cope with and what it will be like to walk down the street. all of those questions. it is notjust me. it is everybody. and i think that you are right, we can certainly scream. i don't want to over exaggerate, we can screen for a few things now and we may be able to screen for many more things in the future. we may have a 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 does not tell everybody until she has had the test to show that she is not affected ljy show that she is not affected by some mutation which may lead to a serious illness.— to a serious illness. returning to a serious illness. returning to the point — to a serious illness. returning to the point about _ to the point about perfectibility and that sort of seductive idea, there is a geneticist working in the united states who has spoken about the second age of eugenics being upon us. either way he sequenced his own child's and tired gino min 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 that makes them real. after this i am going to battersea and i will going to battersea and i will go to the shopping centre and i will see people in all the shapes and sizes and that is great and shapes and sizes and that is greatand imagine 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 life. 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 oh, no. what we say. oh, no, that could be 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, you 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 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 and at least it can be a level playing field so that can be judged a level playing field so that can bejudged on their merit and not simply on whatever physical conditions they carry with them. physical conditions they carry with them-— with them. exactly. and we would all — with them. exactly. and we would all be _ with them. exactly. and we would all be happier- with them. exactly. and we would all be happier if- with them. exactly. and we would all be happier if that| would all be happier if that were the case. we can see everybody wants to be beautiful, everybody wants to beautiful, everybody wants to be young. the fact is they will all age and they will all die. and as they age they will get more disability. so far you are talking about people born with illness and pain 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 population is disabled and most of them through ageing.- of them through ageing. but to et to of them through ageing. but to get to this _ of them through ageing. but to get to this social _ of them through ageing. but to get to this social model - of them through ageing. but to get to this social model which i 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- _ resources are put in place? you are right- i— resources are put in place? you are right- i go _ resources are put in place? you are right. i go to _ resources are put in place? you are right. i go to asia _ resources are put in place? i'm are right. 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. the disabled because they are your future-— the disabled because they are your future. that is the advice but what is — your future. that is the advice but what is the _ your future. that is the advice but what is the reality? - your future. that is the advice but what is the reality? in - but what is the reality? in brazil but what is the reality? i�*i brazil we have a fully accessible bus rapid transport system. 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 at about 0.5% to the price. so they know and you see the metro in delhi, in beijing's. they know that the key to their prosperity is including people. it is true but... but i want to say do not make the mistakes we made. that hrase make the mistakes we made. that phrase that _ make the mistakes we made. that phrase that you've _ 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 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.— have worked in. ironically most ofthe have worked in. ironically most of the charities _ have worked in. ironically most of the charities and _ have worked in. ironically most of the charities and ways - have worked in. ironically most of the charities and ways of - of the charities and ways of dealing with supporting disabled people were up in the 19th century. they were perfect did it 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 you depend on a transport system. we depend on workplaces. they are not accessible. the transport system has to be 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 disabled that make —— impaired ordisabled —— impaired or disabled at the end of their life and old age brings a level of disability to many of us. brings a level of disability to many of us— many of us. absolutely. everyone _ many of us. absolutely. everyone is _ many of us. absolutely. everyone is jetting - many of us. absolutely. everyone is jetting off i many of us. absolutely. | everyone is jetting off to many of us. 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. it is there one exercise ankle. it is there 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. �* ., illness. and the longer we live the more _ illness. and the longer we live the more impairment - illness. and the longer we live the more impairment will- illness. and the longer we live the more impairment will hit l the more impairment will hit us. ~ y the more impairment will hit us. absolutely. demographers talk about _ us. absolutely. demographers talk about what _ us. absolutely. demographers talk about what they _ us. absolutely. demographers talk about what they call - us. absolutely. demographers talk about what they call the l talk about what they call the angular lies asian and that is that you live to a certain age 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 is so expensive and so problematic. which is so expensive and so roblematic. ~ . , , ., problematic. which brings me to one area of _ problematic. which brings me to one area of impairment - problematic. which brings me to one area of impairment that - problematic. which brings me to one area of impairment that i'm| 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, thatis or at least i have missed it, that is not the physical but the mental and intellectual impairment. often of course i 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, the society and could call —— and the culture can do to make life so much better and easierfor disabled people, i considered applying clearly to physical impairmentand applying clearly to physical impairment and disability but how do you cope with profound mental and intellectual impairment? i mental and intellectual impairment?— mental and intellectual im airment? ., ., ~ mental and intellectual imairment? ., .,~ ., ., impairment? i have worked a lot with people _ impairment? i have worked a lot with people with _ impairment? i have worked a lot with people with dementia - impairment? i have worked a lot with people with dementia and l impairment? i have worked a lot with people with dementia and i | with people with dementia and i think the same disability rights apply to them. the same age friendly cities arguments are put forward. so all of the access that i've spoken about helps older people, all of the, the simplicity, the smart phone... i have to press everything and it does everything. now if i had dementia how comfortable would that be? that is why they have a phone, itjust has numbers and you dialand a phone, itjust has numbers and you dial and there for 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 impairmentand picture of normalising impairment and disability within a society? i have introduced you as an ethicist and disability rights advocate 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, the hero of it 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 there for hit is included. unlike me he went to a 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 afunny take your point and bury it in a funny story maybe they will think of it. my point in this book is really that life can be normal. ~ ., ., book is really that life can be normal. ~ . ~ ,. . book is really that life can be normal. 1 . ~ ,. . ., normal. with talked science and ethics and _ normal. with talked science and ethics and the _ normal. with talked science and ethics and the realities - normal. with talked science and ethics and the realities of- 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 a species gets evermore knowledgeable and scientifically capable, do you think we are also becoming wiser? i think we are also becoming wiser? ., , think we are also becoming wiser? .,, , , wiser? i hope so but there is no evidence. _ wiser? i hope so but there is no evidence. if— wiser? i hope so but there is no evidence. if you - wiser? i hope so but there is no evidence. if you look - wiser? i hope so but there is no evidence. if you look at i wiser? i hope so but there is i no evidence. if you look at the world today, you know better than i do that there is conflict in the middle east, all sorts of problems. 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, first year of my college, when they took in women. they had no women since 1347 and they change 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.— with disability. tom shakespeare, - with disability. tom shakespeare, it - with disability. tom j shakespeare, it has with disability. tom - shakespeare, it has been a pleasure. thank you for being on hardtalk. 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 ofjust16. 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 washington, this is bbc news. a powerful earthquake strikes taiwan and triggers tsunami warnings across asia. international pressure is growing on israel, as we learn more about the seven workers killed in an air strike in gaza. us presidentjoe biden and his chinese counterpart xi jinping speak for the first time in month. what it could signal. hello, i'm sumi somaskanda. a powerful earthquake has hit the east coast of taiwan, triggering japan and the philippines to issue tsunami alerts. officials say flights were suspended at okinawa's main airport, as a precautionary measure. us geological survey says the quake measured 7.4 magnitude and say the intensity of the shaking was very high. these are some recent pictures from on the ground in hualien, taiwan, where buildings have collapsed and there are reports of power outages. there have been reports of multiple powerful aftershocks in the region, with one measuring at a 6.4 magnitude. and the philippines, which lies to the south of taiwan, has also declared a tsunami alert for its northern coastline. reuters reports that china's taiwan affairs office said they are willing to provide disaster relief assistance. let's go now to emily feng, she's a correspondent for npr in taipei. what did you experience? 0h, what did you experience? oh, my
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