大象传媒

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07th May 2024

bbc.co.uk/accessall

Access All 鈥� episode 103

Presented by Emma Tracey

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EMMA-听听听听听听听听听听 My guest this time is Liz Carr. She鈥檚 here to talk about her documentary, it鈥檚 all about assisted dying or assisted suicide, which is what Liz chooses to call it. I will talk about that a lot more later. But Liz, you鈥檙e here, you鈥檙e very welcome.

LIZ-听听听听听听听听听听听听听听听听听 Yes, thank you.

EMMA-听听听听听听听听听听 I want to give you the full fat intro that you actually deserve, because Liz has been a comic, a cabaret artist, she actually presented the 大象传媒鈥檚 disability podcast for six years. And myself and our current editor, Damon, worked on that with you, Liz, and we had a lot of fun, didn鈥檛 we?

LIZ-听听听听听听听听听听听听听听听听听 Yeah. I mean, now podcasts are ubiquitous and everyone鈥檚 doing one, but we were like the first lot of 大象传媒 podcasts.

EMMA-听听听听听听听听听听 We were in the first podcast trial, and it was six months long, and then we were supposed to stop. But disabled people rose up and got a petition and gave it to the Director General at the time, Mark Thompson, and we got to keep going on the same feed, in different guises, for nearly 19 years now.

LIZ-听听听听听听听听听听听听听听听听听 Oh my goodness. Can I just continue with that story? So, yes the petition was delivered, but on the day I delivered it I delivered a hard copy of it, and Damon was actually there at the event, and they had been warned that because of my activism they thought that I was going to throw a flour bomb at鈥�

EMMA-听听听听听听听听听听 At Mark Thompson?

LIZ-听听听听听听听听听听听听听听听听听 Yes [laughter]. So, I had a lot of security. Now, if you don鈥檛 know what I look like, I have limited range of mobility, I鈥檓 a wheelchair user. And if I threw a flour bomb it would at best land on my lap. It is not going on anyone else. So, this idea that they were so terrified鈥�

EMMA-听听听听听听听听听听 Ah, they were good times. Okay then, on with the show.

MUSIC-听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听 Hello, welcome to Access All, the 大象传媒鈥檚 weekly disability and mental health podcast. I鈥檓 Emma Tracey, and my guest this time is Liz Carr. Now, she鈥檚 here to talk about her documentary. Something that鈥檚 run through all of Liz鈥檚 work is her activism and campaigning for disability rights. And one of the things that she鈥檚 focused on for many, many years is assisted dying. She had a documentary about it on the World Service in 2012; she had Assisted Suicide, The Musical at the Southbank in 2016; and now she has a prime time documentary which is on 大象传媒 One next Tuesday. And just a note that listeners might find some of the things we talk about, because we鈥檙e about to talk about assisted suicide at length, you might find it upsetting because it is a difficult subject. Let鈥檚 talk to Liz all about that. Liz, you鈥檙e so welcome to Access All.

LIZ-听听听听听听听听听听听听听听听听听 I鈥檝e got questions I want to ask you but maybe we鈥檒l do that later.

EMMA-听听听听听听听听听听 Oh don鈥檛, don鈥檛 be Michael Owen! When I interviewed Michael Owen, the footballer, a few months ago he just started asking me questions. He asked me loads of questions and I was like, who, why? I was looking down at myself as if I wasn鈥檛 there.

LIZ-听听听听听听听听听听听听听听听听听 That mistaken view that it鈥檚 a conversation鈥�

EMMA-听听听听听听听听听听 Yeah exactly [laughs]. No, no, I ask the questions here. No, I don鈥檛; you can ask what you want. So, I鈥檝e noticed actually recently that Radio 4 etc. have started using 鈥渁ssisted dying鈥� and 鈥渁ssisted suicide鈥� interchangeably when talking about this subject, I mean obviously the subject about ending your life with medical supervision. Why do you always say 鈥渁ssisted suicide鈥�?

LIZ-听听听听听听听听听听听听听听听听听 Yeah, so assisted suicide, which is obviously somebody assisting you to end your life, and usually when we鈥檙e talking about these laws it鈥檚 usually a doctor or a medical practitioner doing that. Now, the language changed particularly in the UK in really recent years, and my belief that change to assisted dying is because it sounds better, it sounds nicer. Because when you use words like euthanasia and suicide it becomes a little more shocking and it feels less pleasant. And the argument would go by the other side, those who want the change, is this is just for people who are dying. But actually it isn鈥檛. My belief is that this will touch disabled people whose lives are not about to end, and we see that in other countries. So, I think it鈥檚 being used to kind of make it seem more palatable, in the same way that one of the major campaigning organisations now calls itself, it uses words around dignity, but it used to be the Voluntary Euthanasia Society. So, it鈥檚 about the development of language, but I think it鈥檚 also a bit disingenuous to use 鈥渁ssisted dying鈥�, because we鈥檙e talking about it for people who aren鈥檛 just dying.

EMMA-听听听听听听听听听听 Shall we talk about your documentary now? Because actually it is a really lovely watch. You鈥檙e really funny, the documentary has a lot of humour in it, dark and light. You went to Canada for quite a lot of this documentary where assisted dying is legal. What was that like?

LIZ-听听听听听听听听听听听听听听听听听 So, just to explain, the documentary is an authored documentary by me, something that I鈥檝e been pushing for for about 14, 15 years directly with the 大象传媒. And what it is is an exploration of why I and other people oppose, so where that viewpoint is coming from. And one of the reasons that we go to Canada is because it is a country where it鈥檚 not just legal to end the lives of those mentally competent people who choose it who are terminally ill, it's also a country where it applies to disabled people i.e. those who have medical conditions but whose death is not reasonably foreseeable. However, it鈥檚 also being used for reasons like poverty and homelessness and lack of access to the right support, and that鈥檚 happening knowingly.

EMMA-听听听听听听听听听听 So, explicitly, like no one is under any illusions that it is happening for those reasons, kind of thing?

LIZ-听听听听听听听听听听听听听听听听听 Yes. And people are kind of okay with that and they say that in terms of, I鈥檓 not a fan of opinion polls at all, but there are people going 鈥渁ctually it seems like an acceptable thing to do because reasonably we鈥檙e not going to make all these changes, we can鈥檛 give people the benefits that they need, we can鈥檛 give people the support that they need.鈥� And of course what we hear is 鈥渢hey chose it, we don鈥檛 want to mess with their choice and their autonomy.鈥� Absolutely I believe to a degree in choice and autonomy, but it is used against us. Because if this is really about choice and autonomy then why aren鈥檛 we offering assisted suicide to anybody? Because there鈥檚 actually no limit on that.

EMMA-听听听听听听听听听听 So, why even have the unacceptable suffering, or whatever the line is?

LIZ-听听听听听听听听听听听听听听听听听 Yeah, intolerable.

EMMA-听听听听听听听听听听 In Canada there鈥檚 an extraordinary scene in this documentary where you go to visit Dr Ellen Wiebe, who鈥檚 been involved in hundreds and hundreds of assisted suicides. Tell me about that visit, how did that chat go?

LIZ-听听听听听听听听听听听听听听听听听 So, that was the very first, that was like two days after we鈥檇 flown in to Vancouver, and she was my first experience of talking to someone in Canada. I should also add that she鈥檚 a disabled woman as well; I just about knew that. You see me in my electric wheelchair and you see her on a scooter wheeling in, which is even more surreal, but since it鈥檚 an Access All podcast I will explain that.

EMMA-听听听听听听听听听听 No, it added a massive amount of intrigue鈥�

LIZ-听听听听听听听听听听听听听听听听听 It does.

EMMA-听听听听听听听听听听 鈥�to the scene.

LIZ-听听听听听听听听听听听听听听听听听 She has a laugh that you might think is nerves, and it really isn鈥檛, because if you watch other interviews or clips of her on the internet she鈥檚 always like that, there鈥檚 like cackles almost. And she is so passionate, so passionate that really as long as somebody鈥檚 made the choice themselves and has subjectively defined themselves as suffering then she will help them to end their life.

EMMA-听听听听听听听听听听 Let鈥檚 have a listen to Dr Ellen Wiebe:

[Clip]

ELLEN-听听听听听听听听听听 Hello.

LIZ-听听听听听听听听听听听听听听听听听 Thank you for seeing me.

ELLEN-听听听听听听听听听听 Nice to meet you.

LIZ-听听听听听听听听听听听听听听听听听 You too. Shall we do hands and whatever? Are we very formal? I don鈥檛 know.

ELLEN-听听听听听听听听听听 [Laughs] we don鈥檛 need to be formal, but we also don鈥檛 need to touch hands.

LIZ-听听听听听听听听听听听听听听听听听 Fine, good. So, you do this work actually here sometimes?

ELLEN-听听听听听听听听听听 Most people want to die in their own homes and so I would be in their home. And of course many people are in hospital, in hospice, in care homes. And then there are people who don鈥檛 feel comfortable dying at home; for example they don鈥檛 want their spouse to have to deal with their memory of them dying in their home. So, then they come here, and this is a recliner, and so people recline here and they can snuggle up with their loved ones if they want. And so it鈥檚 a good place for some people.

[End of clip]

EMMA-听听听听听听听听听听 It鈥檚 illegal at the moment in the UK. The bill that鈥檚 being looked at is around terminal illness and people who are mentally competent.

LIZ-听听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 You know, it鈥檚 not about disabled people who are not at the end of their lives. Why do you not want the law to change?

LIZ-听听听听听听听听听听听听听听听听听 Yeah. I think that the current law offers a protection to those who may qualify under the law. So, at the moment the law is in the criminal law, okay, so if anybody assists you. So, the medical professional cannot directly end your life with an injection or give you the tablets to do that. There is still palliative care; there is still withdrawal of treatment that you choose to do. So, there are still options, lots of options at the end of life I believe. But to change it and move it so that it becomes essentially a medical treatment, well what we see in countries where it鈥檚 legal is that the doctors do the assessing and then they do the assisting and then they do the reporting. And I think that鈥檚 slightly concerning. Like, if I鈥檇 written my own school reports they鈥檇 all have been glowing; nobody鈥檚 going to say I did this a bit wrong, so there you go.

EMMA-听听听听听听听听听听 If they were to change the law is there any way it would be okay, you know, if it was done in a different way?

LIZ-听听听听听听听听听听听听听听听听听 Oh, I鈥檓 asked that a lot, you know, if things changed. So, no, I believe that as long as there鈥檚 the deep inequality and that certain people鈥檚 lives, ill people, older people, disabled people, poor people actually, are viewed as less valuable, then to have what I think of as state-assisted, as medically-assisted death isn鈥檛 safe. I don鈥檛 think it鈥檚 safe for the likes of me and other disabled people.

EMMA-听听听听听听听听听听 So, what鈥檚 your evidence that disabled people鈥檚 lives are seen as less valuable?

LIZ-听听听听听听听听听听听听听听听听听 So, the documentary is called Better Off Dead? 鈥� question mark 鈥� absolutely, and it begins with disabled people, some faces that may be familiar, some people who won鈥檛 be familiar, and they all give an example of how complete strangers have gone up to them and told them that if they were like that they鈥檇 rather be dead i.e. it is better to be dead than disabled. And that is such a prevailing view in the media, in the mainstream, in society.

EMMA-听听听听听听听听听听 Do people really think that? I mean, I have actually had that said to me, but I don鈥檛 know if I believed they actually thought it; they just said it in the moment.

LIZ-听听听听听听听听听听听听听听听听听 Then why do they say it? I mean, let鈥檚 go back to a night, Emma Tracey, when we were all together. So, there was you and me and Jo, who鈥檚 now my lovely wife, and Matt Fraser who I co-hosted the podcast with at the time. You both had guide dogs, you and Damon, right, I鈥檓 a wheelchair user, Matt鈥檚 got thalidomide 鈥� so what I鈥檓 suggesting there is a gaggle of disabled people, okay, whatever the collective noun is for us lot, a freak of disabled people. We鈥檙e outside a pub and there鈥檚 a homeless person sitting there, not really asking for money but people are giving them money, and the homeless person comes up to me and puts a pound coin on the arm of my chair.

EMMA-听听听听听听听听听听 That is a true story.

LIZ-听听听听听听听听听听听听听听听听听 It鈥檚 a true story. It鈥檚 incredibly generous, right, but a homeless person sees me as more tragic. I was paid by the 大象传媒, I mean actually that鈥檚 not much money but鈥�

EMMA-听听听听听听听听听听 [Laughs] but you were doing all right.

LIZ-听听听听听听听听听听听听听听听听听 But I was doing all right. I was having fun, I was with a group of friends and colleagues, I was coming out of a pub 鈥� do you see what I mean? It鈥檚 not like I was鈥� So, I think this prevailing view really is to the core that people couldn鈥檛 be like us. And so when I see the stories of people that want assisted suicide, some of the big campaigning stories over the past 20-odd years, often they鈥檙e not terminally ill, they鈥檙e not about to die; they鈥檙e actually disabled people.

EMMA-听听听听听听听听听听 Some of them are, yeah. But what about, I mean鈥�?

LIZ-听听听听听听听听听听听听听听听听听 No, the majority are, that鈥檚 the thing.

EMMA-听听听听听听听听听听 But you鈥檙e such a pro-choice in life person, you know, you work for disabled people to make sure they get the care packages they need when they鈥檙e in hospital. Choice is a massive, massive thing for you.

LIZ-听听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 I mean, what about these people who feel like they are at the end of their lives they鈥檙e going to be suffering terribly and they want the option to end their lives just before things get so bad that they feel they can鈥檛 cope with it? And people who have watched relatives who wanted this and didn鈥檛 get it because the law wasn鈥檛 there, and who suffered massively at the end of their lives. What do you say to those people?

LIZ-听听听听听听听听听听听听听听听听听 Choice is a really fascinating word. It sounds fabulous: do we have choice? Do we actually have that choice to go into the doctor and say, well I just want this, this is what I want? I mean, firstly can you get a doctor鈥檚 appointment? Do you even have a choice to get a doctor鈥檚 appointment? And if you do will it be in person and how long will you have to wait? So, do you have a choice of whether you die at home? Of whether you have palliative care? No, because there鈥檚 such a lack of palliative care and it鈥檚 a postcode lottery that people are not getting choice over the way that they鈥檙e ending their life. So, this is one very particular choice. And it鈥檚 not a personal choice, because to give somebody that choice and to change the law for them has ramifications for the rest of us. So, somebody might choose to go driving very fast down the road because they鈥檙e a speed freak, but they can鈥檛 do that because it would endanger the rest of us. So, this is about that for me.

EMMA-听听听听听听听听听听 But a lot of disabled people won鈥檛 agree with you. Lots of disabled people have other views on this issue, right?

LIZ-听听听听听听听听听听听听听听听听听 I know, it鈥檚 amazing that disabled people have a multiplicity of viewpoints on a subject. So, no of course, and I know that that will be the criticism that I get: 鈥測ou鈥檙e speaking for all disabled people.鈥� Well, firstly I鈥檓 not; I鈥檓 speaking for myself. But I do represent voices that haven鈥檛 been heard, and that is of disabled people who do oppose and feel that often these laws are discussed without us having a voice in them. And we feel that we have a stake in it.

EMMA-听听听听听听听听听听 It鈥檚 interesting that you should say that, Liz, because I鈥檝e been talking to Mims Davies this week, the minister for disabled people, health and work, and I asked her if there was a vote on this issue in the House of Commons which way would she go?

MIMS-听听听听听听听听听听听听 For me at the moment if anybody was voting for it you鈥檇 have to have huge caveats. It鈥檇 have to be very well understood, and I think we鈥檙e miles away from that. I think it鈥檚 important to have the debate, but for me, disabled people and those with health conditions and wellbeing needs have to be listened and understood, and we鈥檙e miles away as far as I can see for making any kind of change to the law.

EMMA-听听听听听听听听听听 Is there no way that your views can co-exist with a law that would allow these terminally ill people and the smallest possible law that could be brought in for terminally ill people, could they not co-exist?

LIZ-听听听听听听听听听听听听听听听听听 Can you guarantee that there will be no mistakes, no abuse, no coercion, no people choosing it because they feel a burden, nobody choosing it because they鈥檙e not getting the right medical treatment, they鈥檙e not getting the right social care, they don鈥檛 have housing? In this economic climate is it safe? Is it a good idea? Is it responsible to be legalising something which can just sort of leapfrog certain issues rather than us having to deal with them? If you can guarantee that people have full choice over their end of life and during their life then let鈥檚 have a conversation. But until that time, absolutely not.

EMMA-听听听听听听听听听听 And you spoke to Lord Faulkner for your documentary, and he鈥檚 a King鈥檚 Council who鈥檚 been around for four different bills on this. Could he guarantee that to you do you think?

LIZ-听听听听听听听听听听听听听听听听听 He says the line in the sand for him is that it鈥檚 terminal illness only. And as we say in the film, the thing about sand is it鈥檚 always changing, and that鈥檚 it. So, as I say, he might interpret it as being that鈥檚 the best way to introduce the law; but our experience looking at other countries in the majority of the countries, over three quarters who have introduced it, it is for a much wider group of people. So, do I believe that? No. But I equally think politicians will say anything to get something past the post.

EMMA-听听听听听听听听听听 I want to go back to something I meant to talk about earlier and then we got sidetracked. But early in the documentary you go, it鈥檚 so funny, your documentary is quite funny because you always say, 鈥楾his is the bit where we go to see my mum,鈥� and 鈥榯his is the bit at the end where I鈥檓 thoughtful, and my favourite song is playing鈥� it鈥檚 really funny. But this is the bit where you go and see your mum, and your mum, it鈥檚 so moving, because your mum has done her homework and she has her diaries there and she starts reading out entries of when you were really ill and when you became disabled. Are we allowed to talk about this?

LIZ-听听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 You had thoughts of not wanting to be around at that point. Why did you want to show that entry?

LIZ-听听听听听听听听听听听听听听听听听 So, all the documentaries that I鈥檝e ever watched on this subject, because they鈥檙e all pro in their basis, in their foundation, almost always show somebody鈥檚 journey, and it鈥檚 usually a literal journey to go to Switzerland to go to Dignitas.

EMMA-听听听听听听听听听听 Or Canada.

LIZ-听听听听听听听听听听听听听听听听听 Well, you can鈥檛鈥�

EMMA-听听听听听听听听听听 I know what you mean, but it鈥檚 usually these documentaries are journeys to assisted death.

LIZ-听听听听听听听听听听听听听听听听听 Yeah. And they鈥檙e individual, it鈥檚 an individual鈥檚 story. And I didn鈥檛 want to put anybody else in the position. I think they can be quite abusive those documentaries. I鈥檓 not a fan of them. I think they can be quite exploitative that kind of TV, so I didn鈥檛 want to do that to someone else. I wouldn鈥檛 put them in that position of something that I wouldn鈥檛 do myself. So, I kind of used myself and my own story.

听听听听听听听听听听听听听听听听听听听听听听听听 So, my mum had gone through her diaries through a certain age, really my teenage, which was not fun and I was in very poor health, and she basically every negative thing that I鈥檇 thought, said or had happened to me she listed. And she read it out in front of the camera. I don鈥檛 recommend that.

EMMA-听听听听听听听听听听 But it鈥檚 really powerful though.

LIZ-听听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 And really kind of helped with your story, because you, Liz Carr, said 鈥淚 don鈥檛 want to exist.鈥�

LIZ-听听听听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Do you think laws, if they鈥檇 been different, anything would have happened to you? I don鈥檛 think so.

LIZ-听听听听听听听听听听听听听听听听听 Well, you know, it鈥檚 about suggesting, it鈥檚 about saying that in context the imagery, the representation, the idea of disability is so negative that, as a teenager I didn鈥檛 want to go on. I didn鈥檛 want to live. And I actually say those words. And it鈥檚 about saying what happens then and raising that as a question when it becomes easier, arguably, to end your life because you don鈥檛 believe that you鈥檝e got a future. And I have seen so many media stories of people, particularly paralysed in accidents, who end their lives because they can鈥檛 bear the change and the new person that they have become. And I understand that. So, there was a big part of trying to show I do understand that, I鈥檝e not always been disabled, and I wanted to die too. So, it鈥檚 about an empathy and saying 鈥淚 do see this through many different perspectives.鈥�

EMMA-听听听听听听听听听听 And what lifted you up? What helped you to move on from those thoughts? Did she write that down as well?

LIZ-听听听听听听听听听听听听听听听听听 [Laughs] friends, love, ambition, politics, disability rights absolutely, meeting other disabled people who went, you know, 鈥渂eing you is okay, it鈥檚 enough, the problems are the barriers in society鈥� 鈥� all of that. And instead of me feeling that all I could do was do physio and learn to walk again and that would be the only way I could have a good life, now it was about there are other changes, other things that you can fight for that actually are solutions that benefit everybody.

EMMA-听听听听听听听听听听 And what have you learnt? I mean, you knew so much already, you鈥檝e been campaigning about this for so long, what have you learnt from making this documentary?

LIZ-听听听听听听听听听听听听听听听听听 I鈥檓 horrified by the idea of some laws, the majority that exist in the world, being about an idea of intolerable or unbearable suffering. And I鈥檒l tell you why: because if we take Canada where people have used these laws openly for things like poverty and homelessness, if you鈥檙e not disabled, you can鈥檛 do that; you can鈥檛 go and say, 鈥渃ould you help me Doctor? I鈥檝e had enough.鈥� What will happen is that you鈥檒l hopefully get support to change that situation, and you will be stopped from wanting to end your life. However, if a disabled person has the same, exactly the same concern and issue and reason to end their life, they can qualify for euthanasia or assisted suicide. And that discrepancy is chilling to me, that the only difference between two people who are being threatened, for example with homelessness, is that one of those people has medical conditions and the other person doesn鈥檛. And we will allow doctors to assist in the death of one of those people in the name of choice and autonomy. I think that鈥檚 messed up. I think we either offer it to everybody or we don鈥檛 offer it until we can guarantee that we are supporting people to live. And I think that, learning that really deeply and seeing it in practice. I鈥檝e always felt this is about disabled people and this will be used when introduced for socioeconomic reasons, directly or indirectly. Canada proves both of those things. I like being right鈥�

EMMA-听听听听听听听听听听 But not on this one.

LIZ-听听听听听听听听听听听听听听听听听 鈥�but in this case I really wish I wasn鈥檛.

EMMA-听听听听听听听听听听 Liz Carr鈥檚 documentary Better Off Dead? 鈥� question mark 鈥� is on 大象传媒 One on Tuesday 14th May at 9pm, and it goes on iPlayer at the same time. Liz Carr, thank you so much for speaking to me.

LIZ-听听听听听听听听听听听听听听听听听 Thank you, Emma Tracey.

EMMA-听听听听听听听听听听 There you go, that鈥檚 Liz Carr there for you. Better Off Dead? 鈥� question mark 鈥� on 大象传媒 One next week. But you lucky things, you鈥檝e actually got another episode of Access All coming up in a couple of days. Later this week I鈥檒l be speaking to the minister for disabled people, health and work, Mims Davies on a whole range of subjects, including the creation of the BSL advisory board. In the meantime get in touch. Email accessall@bbc.co.uk about anything you鈥檝e heard today or in any other episode on this feed. And subscribe to us on 大象传媒 Sounds or wherever you get your podcasts. See you soon. Bye bye.

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