consternation of my guest today, the actor and disability rights campaigner liz carr. is the focus on a good death detracting from the right to a good life? liz carr, welcome to hardtalk. thank you. been kind of looking forward to this. stephen chuckles. well, let's see if you feel that way in 25 minutes�* time. 0k, yes, let's see. you have faced enormous health challenges in your life, but you sit here as a successful stand—up

comedian, a very successful actor, and ijust wonder if that reflects on a sort of innate positivity in your nature. oh, no, not at all. i'm deeply bleak. i think when i was about 13, my consultant said to me, "you won't live to be old." and that is impacting on a huge level, because once you're told that, you... every day becomes your potential last day. so my poor partner, you know, every day... or if i feel something, ifeel a bit poorly, i'm really frightened. i have been ill, quite ill in my life, but being told things like that, and...and i think a perception of, gosh, if you look like that, you're... you know, are you 0k? and i do get people worried about how i look. i'm very thin. that's just because of the condition that i had. yeah.

so i think, have i got an innate positivity? no, i'm actually deeply bleak. and, you know, to cheer me up, i often watch horror films. that's the kind of person you're dealing with. yours is a particular condition which only really developed when you... i think you were about seven years old. so your earliest memories, your early experience as a young girl was of being perfectly sort of healthy, and then you became ill. and ijust wonder whether you feel, looking back on that, you know, youth, that was significant in that you had a pre—illness experience, and that coloured the way you reacted to what then happened to you? very much so. you know, i had a very... i'm not sure i like the word, a very normal upbringing up to the age of seven. i was a really good runner. my family were quite sporty. i did well at school, i was really popular. then we go... we emigrate to the states cos of my dad's job, and within six months i become

ill, a very rare condition, and then everything changes. i go on steroids, huge amounts of steroids, i become a chubby child. nothing wrong with that, but this is a drug thing, very different to how i looked. and i'm not fit now, i can't run around any more. we come back to england, and i go back to the same school, and kids who were friends of mine are accusing me of being an impostor. and i'm now not popular, i'm somebody that they're afraid of. i had to move schools because the comparison between who i was and then who i became was a stark education in how we treat different people and how we treat people who are different. you talk about that education in how we treat people. i mean, you were sort of educating yourself through your teenage years and then going to university, cos it seems to me you were, at a time, very despairing, very bleak about any sort of brightness in your future, and that changed once you got

to university, and i'm not sure entirely... what happened 7 so if we can go back slightly to explain that bleakness, you know. so, i never saw anyone that looked like me — and i don't mean that literally, i mean disabled people having anything but a bad life on tv. if you did see them at all, you'd see the charity kind of raising money for people like me, who looked a bit like me, you'd see documentaries on cures. you wouldn't see us just being there and living. so i was being told... and again, even by the medical profession, i remember one day going into a consultation and the very scary doctor bellowing. and i came in in a wheelchair, and the doctor bellowed and said, "i'd rather see you crawling on your belly "than use that thing." wow. and the thing was the wheelchair. so we are so... you know, the message i'm getting is that unless you can

walk, unless you can do everything that everybody else does, then you've got...you know, you're not going to have a decent life. i believed that. it was devastating. and...and the only thing that changed that, really, was education, in the sense of freedom was going to university. and that was when... cos i went to a mainstream school, my parents really fought for me to go to mainstream — and i did, too, cos i wasn't disabled. despite the look of me and the fact that i had all the trappings, the wheelchair, i was like, "i'm not disabled." because i didn't want to be in that group, you know? and then i go to university, and i start to meet other disabled people. and then what happens is i go to something called a personal development course. i thought it was about becoming more confident. and actually there was a room of disabled people, and we learnt that, do you know what, you can

have a decent life. it's not that you can't do things, it's not that your body doesn't work like other people's, it's that there are barriers — attitudinal, environmental, institutional — that block you from having that opportunity. so the onus then is on working to change that environment rather than, you know, sort of taking it upon yourself, saying, in a way, "this is my fault, i'm useless," you look at the environment around you and say, "how can i fight to change this "so that actually i can fulfil my potential?" it's exactly that. the relief that... what that took off me... i had spent from seven to 18 or 19 believing that because i can't do that, i'm not going to... i'm going to probably have to go back home and go in a care home or live with my parents. that's what i thought. i didn't think i could have the opportunities that other people had. and now it's like, i don't have to keep going to physio, i don't have to get cure... cure is not the aim. curing society of its ills, in a way.

and that also then gives you... i mean, this works for other oppressions — racism, sexism, heterosexism. it's like, now we can collectively try and solve the problems. yeah, but to take that on, you've got to be a fighter, you've got to have that in you. cos, you know, trying to change society, change people's attitudes, change your physical environment, get this new focus on accessibility to allow you to move around and do stuff, that's a heck of a fight. but it made such sense to me. and so i think i felt passionate about that. it was like, you know... a really transformative moment for me is i went... i've kind of got the wanderlust, i love travel, and that's part because when i was growing up, we lived on the wirral, and we'd only go like 45 minutes away to north wales on holiday. so i think when i became an adult, i was like, "i want to travel." and i went to the states and i went to california. that was a big dream, the whole film and hollywood. but we're in san francisco and i catch a bus. this was the early �*90s. buses were not accessible in the uk. that taught me everything that i needed to know. i am the same me in both countries, but why in one country can i use public

transport, public appropriate, and in another i can't? it is, and i am not the problem. and the great thing, i've got... i've still got the pictures. another wheelchair user gets on the bus. iwas... i mean, the pictures. ..i was just ecstatic because i saw potential, and i guess that's it, i'm... i don't like being told... i don't like being told no, i guess. the space you... i mean, obviously you travel physical space in your travels, but the space i'm really interested in is the space that you occupied onstage and then on screen, you know, choosing, embracing, being a public performer. that, again, is a fascinating choice. and ijust wonder how much you had to fight to get into that space. i mean, at school, drama wasn't accessible to me. so when i go to university, i go to nottingham uni and i do

law, and i do a stint in the law review. and i, you know, i was an exhibitionist. and, um, and i use humour. i use humour a lot. it's a protection, but also it relaxes people. it's a great help with communication with people. you're in yourface, in your humour. i mean, let's be honest. you're wearing a rather wonderful necklace today which says better off dead, which is the title of a documentary you've made. but i'm just taking from that that you enjoy sort of confronting people. yeah. yes. because there's no point being polite and nice and "hi, how are you?" that's all great, and that has a part to play, but we really want to know much more about people. we need... we need to connect, you know, in a sense of humanity, i think. and what this does, yes, it's the name of the documentary, but it's not there completely to be provocative.

it's because complete strangers in the street will say to visibly disabled people, "gosh, you know, "if was like you, i think i'd rather be dead." they think they're complimenting you, and they're actually saying death is better than being you. they think that's empathy. yes, absolutely. and so wearing this and the name of the programme and looking at that was, like, real... this is real now. i'm real. i'm a human. i'm a disabled woman. i'm very ok with that. do you really think that my life is so awful that i constantly want to die? sure. and just to bring it back to your life in theatre and acting. i was lucky enough to see you in the normal heart, which... a role in a very powerful play, for which you won a prestigious award. you were playing the part of a character, a doctor, who is in a wheelchair.

yeah. and you are in a wheelchair. i just wonder, is the world of acting now open to you to the point where you could play lady macbeth? you know, you can play roles which traditionally have never been played by men or women with a disability? absolutely. in fact, that would be my dream role. i think it would be fascinating to play that. you know, what...what does that... ? does it give us something different? a different version of her? of course it does, if i played lady macbeth. but that particular role that i played — the role of my life, by the way — it was the best experience i ever, ever, ever had. um, the character was a wheelchair using — and, actually, an electric wheelchair using — disabled woman. i don't know any other scripts that have that written in particularly. and honestly, since i won the olivier, which is

an acting award, i have not had less work. i've not had an audition in two years. i've never worked less... really? ..since i've done well. and why is that? uh, i have no... i mean, i don't think the industry is in a particularly... you know, that's not just me, but it's not like people have gone, "oh, gosh, disabled people, they can act. "let's employ her. " uh, i don't know. now, you say you haven't had a decent part in the last two years, but you have been extremely high profile, because for many years you've been a campaigner against what is known as assisted dying. but it has all come to a head in recent weeks and months in the united kingdom, as the uk parliament prepares to vote on a specific assisted dying proposal. now, why do you believe so strongly that this isn't. .. ..isn�*tjust an issue for those who are terminally ill, which is actually what the specific proposal is about? you have to have a doctor say you're within six months of death to qualify for this assisted dying. but you say, no, actually, this involves vulnerable people and disabled people who are not terminally ill. why do you believe that?

well, firstly, i believe that a definite definition of terminal illness is quite often slippery, actually. and whether you're... whatever view you have on this, the doctors involved with that agree. like, in two thirds of cases, you can't predict that, predictions are not clear. and there is actually a fine line between terminal illness, i believe, and disability, particularly even medically, legally, and in public perception. and what i mean by that is certainly in the uk, most of the major legal cases, people who've tried to change the law, they've all been disabled, they haven't been terminally ill. so in the media we get this sense of who is... who is terminally ill and who is disabled. and public perception is it's this gang of people. they look like me.

so i started to know that... does this whole discussion make you feel vulnerable? yes. i mean, i'm not sleeping. you know, this is not... and i appreciate that whichever perspective — if you want this at the end of your life, or you're terrified of this becoming legal — i think we're all in this situation when these bills come in. but it is terrifying for me that once we cross that line and we allow the state and the medical profession to get involved in the deaths, in the killing, or the giving of lethal medication to certain people, that we've crossed... we've crossed a moral divide, and there's no going back. but is there no part of liz carr which actually shares the idea that... that in extremis, you want agency, you want choice, and preservation of what you would define as dignity. because that's what the supporters of assisted dying say they are all about. but they're usually talking about dignity in terms

of the things that i used to believe made me have no dignity growing up. so it's often, i mean, really a very strong line that you'll hear is, "if i ever get that "i have to use one of those things, "if i ever get that i need help to go to the toilet..." "can you imagine being incontinent?" or... ie the measures of dignity that people often use, and i appreciate that subjectivity, but because of the negativity around disability, they're usually things that are very much part and parcel of being a disabled person. so when people are saying, you know, "i want to die with dignity," often what they're saying as well — pain�*s a different thing, we'll talk about that, i'm sure — but in terms of the other areas that are seen as suffering, they're usually around autonomy, dignity, not being able to do the same things they used to be...to do. that's disability. your argument also seems to be, you know, you can precis it as the slippery slope argument,

that once a nation embraces the most limited form of assisted dying for the terminally ill, you seem to suggest there is a sort of inevitability about going further. and it's indeed true that in a country like canada, they did go further. they expanded the numbers of people who would qualify for a form of assisted dying. they've done the same, they've broadened it in belgium and the netherlands as well. indeed, in those two countries, minors, that is under—18s, can in very particular circumstances where they are close to death, they can qualify for assisted dying. but in britain, the argument is no, ours is an absolutely strict, safeguarded proposal involving a judge and two doctors, medical definitions which are clear, there will be no backsliding. why don't you believe that? because i've worked on this for probably 20 years now, and have been around the world

and talked to people on both sides. i made a world service documentary when assisted death is legal. you went to canada, didn't you? i did this time. now, because of the broadening of the law, thousands of people every year take... you know, i don't know, "take advantage" is a stupid phrase, but they use the law to choose to die. absolutely. it was 1,000, around 1,000 people in 2016. i think the last figures that we had, so probably �*22 or �*23, at that period it was like 13,000 people. it's big over there and it is, you know, it's going to be for people who have mental health issues in 2027. it is absolutely notjust about terminal illness. it's about disabled people. and what i encountered is that you can qualify because you have a physical condition. then you have to prove suffering. your suffering can be for other reasons. it can be existential, it can be social, it can be socioeconomic. and that's where i guess i've always known, and a lot of people in the disability rights community, in not dead yet, the group that

i'm part of, is we know this is about us, and we know that it is going to extend. and there's one really good reason why i believe that, is because if we're going to limit this just for terminally ill people, there are already people knocking at the door to say "that's not fair." because let's say you are dying within a limited number of months. what about people who are, in inverted commas, "suffering" and are going to suffer for the rest of their life? isn't it discrimination to not allow them the same right? and that's how the bill will be extended over the next few years. your arguments are nuanced and they're complex, you know, and ethically they're sophisticated. does it matter to you, should it matter, that opinion polls consistently show 70% plus of the british people support the idea of having legislation to allow assisted dying in certain strict circumstances? yeah.

i mean, i'm glad you said, like, consistently, because i think the british, uh.. oh, gosh, what is it? like, there's a survey of british attitudes that's been going on since �*83. it's well respected and the figure�*s pretty much been the same, and it's around 77%. the last one was 2016. so absolutely... doesn't that matter? in a democracy? uh, where do we see the balance in this debate? right? so if everybody got to... this is not about me, by the way, and watching my doc, i don't get any money for people watching it. if we showed people a different perspective, the voice of all the people who were opposing or who had concerns, i don't believe the figure would be so high. and we find that, that when you talk... when i talk to people, when people have watched the documentary, even those who don't agree with me have gone, "actually, i didn't realise. i've never seen that." it's the difference.

do you remember earlier on we were talking about what i learned at 18 and 19? between it's either me that needs to change, or it's society. i guess that comes through here really strongly. i understand that people desperately want control at a time when it's terrifying. maybe they're in pain, maybe they're worried about pain. however, i'm thinking we don't all... you know, autonomy has its limits, personalfreedom has its limits if we are part of a society. and we need to think about the protection of all other people. not even me particularly — i've got a voice and a platform — but what about those people, iller, older, disabled people, who don't have that platform? i worry for them. it's interesting, you say that you are fighting for the right to live, not the right to die. and finally, i just want to take you back to that young girl, the young liz carr, who was in despair aged 12, 13. and you talk about it in your documentary. because your mum kept journals and she said that there were times when, you know, she, as your mum,

saw and heard you say that you wanted to die. is that a fundamental part of your thinking today, that you know, when you were much younger, you actually, had you had the opportunity, you might have sought to end your life? mm. i mean, i didn't even remember that, that was the worst day of filming. i was quite damaged by that, because my mum read it, and there was a lot more. and i knew that it was desperate times then, but i didn't realise that i had actually said the words that i wanted to die, and that really frightens me. how many people out there feel so desperate? but they're not desperate particularly because of their medical conditions. it's like, you're desperate because you're not given opportunities. that has to be part of what has driven me, definitely. and i think sometimes we need to say no. not...not give people support. they...

i want everyone to have a good death. i just don't want the ability to give some people what they want to harm others. and i think, what if i had been allowed that? what if... ? what if, when we legalise, if we legalise, there are people who take that option, who could they have become? like, what support were they given? what support were they not given? and it worries me that if i wanted to die, i don't know if you're disabled or not, but there's the two of us here, sitting here now. i could qualify, because i have a medical condition. you, if you were suicidal or felt desperate enough that you didn't want to go on, ifeel people would jump to your aid and say, "look, stephen, don't do it. think about this. "what about suicide prevention?" i believe that if it was me, or somebody that looked like me, that they would be more likely to go, "you know what, i understand. you've had it tough. "look at the things

you've gone through. "and you do have medical issues. "we..." you know, "here is this thing like we have in canada "or wherever, and we can help you there." i don't know that i would get pushed towards suicide prevention. my fear is that me and people like me get pushed towards assisted suicide. liz carr, we have to end there. but thank you very much forjoining me on hardtalk. thank you so much. hello there. sunday was a day of snow, a day of disruption for some, and now the met office has extended the amber weather warning. it's going to be valid until 6am on monday morning. they've shrunk the area a little, it includes the lake district. some areas could see as much as ten 10—15cm of further snow,

on top of already significant snowfall and blizzard like conditions, with strong winds close to the centre of the low. we'll continue to see some snow showers through the night across northeast scotland, across the peaks and pennines as well, across the north of england. rain elsewhere, but with temperatures here in rural spots falling below freezing, ice could be an issue as well first thing. so an icy start, be careful if you're going to be out on the roads early on, particularly if the snow showers are set to continue. as we go through the morning, there'll be further snow showers driven along by strong north to north westerly winds. some of those will run down through wales and into the midlands here. a wintry mix of rain, sleet and snow. south of the m4 corridor, some brightness, but look at the gusts of winds, gusts in excess quite widely of 40—115 miles an hour, and coming from a north westerly direction, that is going to make it feel cold. so your thermometer might suggest three 3—6 celsius, but factor in the strength

and the direction of the wind, for many of us, it will feel subzero. that cold air stays in place as well as we move through tuesday. still pretty windy with it, and that will continue to drive in a rash of snow showers draped along the coast, some pushing further inland as well. the best of any brightness further south, but again, another cold story. now, as we move out of tuesday into wednesday, the winds will fall a little lighter as the low pressure moves off to scandinavia. but we'll need to keep an eye on this frontal system moving in from the south. it could be a little bit further north and run the risk of bringing some rain across channel coasts, but certainly it will bring a little bit more in the way of cloud and spoil the sunshine. a northerly wind continues to drive in some showers to the far north of scotland. sunshine elsewhere, but temperatures, again, really struggling. so as we go through the week ahead, it looks likely that this cold spell will continue, and icy starts for many, cold wintry showers continuing and a widespread frost.

live from washington. this is bbc news. millions of people across the us are in the grip of a huge winter storm that could bring the heaviest snowfall and coldest temperatures in over a decade. elon musk takes aim at nigel farage — writing on x that he "doesn't have what it takes" to lead reform uk. plus — the 82nd golden globes takes place in hollywood — we'll bring you the latest, live from los angeles. hello, i'm helena humphries. we begin here in the us — where millions of people

are under weather alerts as a major winter storm sweeps the country. some communities could experience the heaviest snowfall and coldest temperatures in more than a decade. a state of emergency has been declared in six states — west virginia, kentucky, virginia, kansas, arkansas and missouri. in kansas, the usual average low temperature at this time of year is minus 6 degrees celsius — now it's expected to fall to minus 29 degrees. in kentucky, the average low is minus 3 degrees, but it's expected to be as low as minus 16. these are pictures from missouri — one of those states under an emergency. snow, ice and plunging temperatures have affected the roads while air travel has also been hit. more than 5,000 flights across the us have so far been cancelled, according to flight tracking website flightaware. joining me live now is ben noll. he's a weather, climate, and meteorology reporter for the washington post, who's been tracking the winter storm.

good to have you with us.