07th May 2024
bbc.co.uk/accessall
Access All – episode 103
Presented by Emma Tracey
EMMA- Myguest this time is Liz Carr. She’s here to talk about her documentary, it’s allabout 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’re here, you’re verywelcome.
LIZ- Yes,thank you.
EMMA- Iwant to give you the full fat intro that you actually deserve, because Liz hasbeen a comic, a cabaret artist, she actually presented the BBC’s disabilitypodcast for six years. And myself and our current editor, Damon, worked on thatwith you, Liz, and we had a lot of fun, didn’t we?
LIZ- Yeah.I mean, now podcasts are ubiquitous and everyone’s doing one, but we were likethe first lot of BBC podcasts.
EMMA- Wewere in the first podcast trial, and it was six months long, and then we weresupposed to stop. But disabled people rose up and got a petition and gave it tothe Director General at the time, Mark Thompson, and we got to keep going onthe same feed, in different guises, for nearly 19 years now.
LIZ- Ohmy goodness. Can I just continue with that story? So, yes the petition wasdelivered, but on the day I delivered it I delivered a hard copy of it, andDamon was actually there at the event, and they had been warned that because ofmy activism they thought that I was going to throw a flour bomb at…
EMMA- AtMark Thompson?
LIZ- Yes[laughter]. So, I had a lot of security. Now, if you don’t know what I looklike, I have limited range of mobility, I’m a wheelchair user. And if I threw aflour bomb it would at best land on my lap. It is not going on anyone else. So,this idea that they were so terrified…
EMMA- Ah,they were good times. Okay then, on with the show.
MUSIC- Thememusic.
EMMA- Hello,welcome to Access All, the BBC’s weekly disability and mental health podcast.I’m Emma Tracey, and my guest this time is Liz Carr. Now, she’s here to talkabout her documentary. Something that’s run through all of Liz’s work is heractivism and campaigning for disability rights. And one of the things thatshe’s focused on for many, many years is assisted dying. She had a documentaryabout it on the World Service in 2012; she had Assisted Suicide, The Musical atthe Southbank in 2016; and now she has a prime time documentary which is on BBCOne next Tuesday. And just a note that listeners might find some of the thingswe talk about, because we’re about to talk about assisted suicide at length,you might find it upsetting because it is a difficult subject. Let’s talk toLiz all about that. Liz, you’re so welcome to Access All.
LIZ- I’vegot questions I want to ask you but maybe we’ll do that later.
EMMA- Ohdon’t, don’t be Michael Owen! When I interviewed Michael Owen, the footballer,a few months ago he just started asking me questions. He asked me loads ofquestions and I was like, who, why? I was looking down at myself as if I wasn’tthere.
LIZ- Thatmistaken view that it’s a conversation…
EMMA- Yeahexactly [laughs]. No, no, I ask the questions here. No, I don’t; you can askwhat you want. So, I’ve noticed actually recently that Radio 4 etc. havestarted using “assisted dying” and “assisted suicide” interchangeably whentalking about this subject, I mean obviously the subject about ending your lifewith medical supervision. Why do you always say “assisted suicide”?
LIZ- Yeah,so assisted suicide, which is obviously somebody assisting you to end yourlife, and usually when we’re talking about these laws it’s usually a doctor ora medical practitioner doing that. Now, the language changed particularly in theUK in really recent years, and my belief that change to assisted dying isbecause it sounds better, it sounds nicer. Because when you use words likeeuthanasia and suicide it becomes a little more shocking and it feels lesspleasant. And the argument would go by the other side, those who want thechange, is this is just for people who are dying. But actually it isn’t. Mybelief is that this will touch disabled people whose lives are not about toend, and we see that in other countries. So, I think it’s being used to kind ofmake it seem more palatable, in the same way that one of the major campaigningorganisations now calls itself, it uses words around dignity, but it used to bethe Voluntary Euthanasia Society. So, it’s about the development of language,but I think it’s also a bit disingenuous to use “assisted dying”, because we’retalking about it for people who aren’t just dying.
EMMA- Shallwe talk about your documentary now? Because actually it is a really lovelywatch. You’re really funny, the documentary has a lot of humour in it, dark andlight. You went to Canada for quite a lot of this documentary where assisteddying is legal. What was that like?
LIZ- So,just to explain, the documentary is an authored documentary by me, something thatI’ve been pushing for for about 14, 15 years directly with the BBC. And what itis is an exploration of why I and other people oppose, so where that viewpointis coming from. And one of the reasons that we go to Canada is because it is acountry where it’s not just legal to end the lives of those mentally competentpeople who choose it who are terminally ill, it's also a country where itapplies to disabled people i.e. those who have medical conditions but whosedeath is not reasonably foreseeable. However, it’s also being used for reasonslike poverty and homelessness and lack of access to the right support, andthat’s happening knowingly.
EMMA- So,explicitly, like no one is under any illusions that it is happening for thosereasons, kind of thing?
LIZ- Yes.And people are kind of okay with that and they say that in terms of, I’m not afan of opinion polls at all, but there are people going “actually it seems likean acceptable thing to do because reasonably we’re not going to make all thesechanges, we can’t give people the benefits that they need, we can’t give peoplethe support that they need.” And of course what we hear is “they chose it, wedon’t want to mess with their choice and their autonomy.” Absolutely I believeto a degree in choice and autonomy, but it is used against us. Because if thisis really about choice and autonomy then why aren’t we offering assistedsuicide to anybody? Because there’s actually no limit on that.
EMMA- So,why even have the unacceptable suffering, or whatever the line is?
LIZ- Yeah,intolerable.
EMMA- InCanada there’s an extraordinary scene in this documentary where you go to visitDr Ellen Wiebe, who’s been involved in hundreds and hundreds of assistedsuicides. Tell me about that visit, how did that chat go?
LIZ- So,that was the very first, that was like two days after we’d flown in toVancouver, and she was my first experience of talking to someone in Canada. Ishould also add that she’s 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’s an Access All podcast I will explainthat.
EMMA- No,it added a massive amount of intrigue…
LIZ- Itdoes.
EMMA- …tothe scene.
LIZ- Shehas a laugh that you might think is nerves, and it really isn’t, because if youwatch other interviews or clips of her on the internet she’s always like that, there’slike cackles almost. And she is so passionate, so passionate that really aslong as somebody’s made the choice themselves and has subjectively definedthemselves as suffering then she will help them to end their life.
EMMA- Let’shave a listen to Dr Ellen Wiebe:
[Clip]
ELLEN- Hello.
LIZ- Thankyou for seeing me.
ELLEN- Niceto meet you.
LIZ- Youtoo. Shall we do hands and whatever? Are we very formal? I don’t know.
ELLEN- [Laughs]we don’t need to be formal, but we also don’t need to touch hands.
LIZ- Fine,good. So, you do this work actually here sometimes?
ELLEN- Mostpeople want to die in their own homes and so I would be in their home. And ofcourse many people are in hospital, in hospice, in care homes. And then thereare people who don’t feel comfortable dying at home; for example they don’twant their spouse to have to deal with their memory of them dying in theirhome. So, then they come here, and this is a recliner, and so people reclinehere and they can snuggle up with their loved ones if they want. And so it’s agood place for some people.
[End of clip]
EMMA- It’sillegal at the moment in the UK. The bill that’s being looked at is aroundterminal illness and people who are mentally competent.
LIZ- Yeah.
EMMA- Youknow, it’s not about disabled people who are not at the end of their lives. Whydo you not want the law to change?
LIZ- Yeah.I think that the current law offers a protection to those who may qualify underthe law. So, at the moment the law is in the criminal law, okay, so if anybodyassists you. So, the medical professional cannot directly end your life with aninjection 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 arestill options, lots of options at the end of life I believe. But to change itand move it so that it becomes essentially a medical treatment, well what wesee in countries where it’s legal is that the doctors do the assessing and thenthey do the assisting and then they do the reporting. And I think that’sslightly concerning. Like, if I’d written my own school reports they’d all havebeen glowing; nobody’s going to say I did this a bit wrong, so there you go.
EMMA- Ifthey were to change the law is there any way it would be okay, you know, if itwas done in a different way?
LIZ- Oh,I’m asked that a lot, you know, if things changed. So, no, I believe that aslong as there’s the deep inequality and that certain people’s lives, illpeople, older people, disabled people, poor people actually, are viewed as lessvaluable, then to have what I think of as state-assisted, as medically-assisteddeath isn’t safe. I don’t think it’s safe for the likes of me and otherdisabled people.
EMMA- So,what’s your evidence that disabled people’s lives are seen as less valuable?
LIZ- So,the documentary is called Better Off Dead? – question mark – absolutely, and itbegins with disabled people, some faces that may be familiar, some people whowon’t be familiar, and they all give an example of how complete strangers havegone up to them and told them that if they were like that they’d rather be deadi.e. it is better to be dead than disabled. And that is such a prevailing viewin the media, in the mainstream, in society.
EMMA- Dopeople really think that? I mean, I have actually had that said to me, but Idon’t know if I believed they actually thought it; they just said it in themoment.
LIZ- Thenwhy do they say it? I mean, let’s go back to a night, Emma Tracey, when we wereall together. So, there was you and me and Jo, who’s now my lovely wife, andMatt Fraser who I co-hosted the podcast with at the time. You both had guidedogs, you and Damon, right, I’m a wheelchair user, Matt’s got thalidomide – sowhat I’m suggesting there is a gaggle of disabled people, okay, whatever thecollective noun is for us lot, a freak of disabled people. We’re outside a puband there’s a homeless person sitting there, not really asking for money but peopleare giving them money, and the homeless person comes up to me and puts a poundcoin on the arm of my chair.
EMMA- Thatis a true story.
LIZ- It’sa true story. It’s incredibly generous, right, but a homeless person sees me asmore tragic. I was paid by the BBC, I mean actually that’s not much money but…
EMMA- [Laughs]but you were doing all right.
LIZ- ButI was doing all right. I was having fun, I was with a group of friends andcolleagues, I was coming out of a pub – do you see what I mean? It’s not like Iwas… So, I think this prevailing view really is to the core that peoplecouldn’t be like us. And so when I see the stories of people that want assistedsuicide, some of the big campaigning stories over the past 20-odd years, oftenthey’re not terminally ill, they’re not about to die; they’re actually disabledpeople.
EMMA- Someof them are, yeah. But what about, I mean…?
LIZ- No,the majority are, that’s the thing.
EMMA- Butyou’re such a pro-choice in life person, you know, you work for disabled peopleto make sure they get the care packages they need when they’re in hospital.Choice is a massive, massive thing for you.
LIZ- Yeah.
EMMA- Imean, what about these people who feel like they are at the end of their livesthey’re going to be suffering terribly and they want the option to end theirlives just before things get so bad that they feel they can’t cope with it? Andpeople who have watched relatives who wanted this and didn’t get it because thelaw wasn’t there, and who suffered massively at the end of their lives. What doyou say to those people?
LIZ- Choiceis a really fascinating word. It sounds fabulous: do we have choice? Do weactually 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’s appointment? Do youeven have a choice to get a doctor’s appointment? And if you do will it be inperson and how long will you have to wait? So, do you have a choice of whetheryou die at home? Of whether you have palliative care? No, because there’s sucha lack of palliative care and it’s a postcode lottery that people are notgetting choice over the way that they’re ending their life. So, this is onevery particular choice. And it’s not a personal choice, because to give somebodythat choice and to change the law for them has ramifications for the rest ofus. So, somebody might choose to go driving very fast down the road becausethey’re a speed freak, but they can’t do that because it would endanger therest of us. So, this is about that for me.
EMMA- Buta lot of disabled people won’t agree with you. Lots of disabled people haveother views on this issue, right?
LIZ- Iknow, it’s amazing that disabled people have a multiplicity of viewpoints on asubject. So, no of course, and I know that that will be the criticism that Iget: “you’re speaking for all disabled people.” Well, firstly I’m not; I’mspeaking for myself. But I do represent voices that haven’t been heard, and thatis of disabled people who do oppose and feel that often these laws arediscussed without us having a voice in them. And we feel that we have a stakein it.
EMMA- It’sinteresting that you should say that, Liz, because I’ve been talking to MimsDavies this week, the minister for disabled people, health and work, and Iasked her if there was a vote on this issue in the House of Commons which waywould she go?
MIMS- Forme at the moment if anybody was voting for it you’d have to have huge caveats.It’d have to be very well understood, and I think we’re miles away from that. Ithink it’s important to have the debate, but for me, disabled people and thosewith health conditions and wellbeing needs have to be listened and understood,and we’re miles away as far as I can see for making any kind of change to thelaw.
EMMA- Isthere no way that your views can co-exist with a law that would allow theseterminally ill people and the smallest possible law that could be brought infor terminally ill people, could they not co-exist?
LIZ- Canyou guarantee that there will be no mistakes, no abuse, no coercion, no peoplechoosing it because they feel a burden, nobody choosing it because they’re notgetting the right medical treatment, they’re not getting the right social care,they don’t have housing? In this economic climate is it safe? Is it a goodidea? Is it responsible to be legalising something which can just sort of leapfrogcertain issues rather than us having to deal with them? If you can guaranteethat people have full choice over their end of life and during their life thenlet’s have a conversation. But until that time, absolutely not.
EMMA- Andyou spoke to Lord Faulkner for your documentary, and he’s a King’s Councilwho’s been around for four different bills on this. Could he guarantee that toyou do you think?
LIZ- Hesays the line in the sand for him is that it’s terminal illness only. And as wesay in the film, the thing about sand is it’s always changing, and that’s it.So, as I say, he might interpret it as being that’s the best way to introducethe law; but our experience looking at other countries in the majority of thecountries, over three quarters who have introduced it, it is for a much widergroup of people. So, do I believe that? No. But I equally think politicianswill say anything to get something past the post.
EMMA- Iwant to go back to something I meant to talk about earlier and then we gotsidetracked. But early in the documentary you go, it’s so funny, yourdocumentary is quite funny because you always say, ‘This is the bit where we goto see my mum,’ and ‘this is the bit at the end where I’m thoughtful, and myfavourite song is playing’ it’s really funny. But this is the bit where you goand see your mum, and your mum, it’s so moving, because your mum has done herhomework and she has her diaries there and she starts reading out entries ofwhen you were really ill and when you became disabled. Are we allowed to talkabout this?
LIZ- Yeah.
EMMA- Youhad thoughts of not wanting to be around at that point. Why did you want toshow that entry?
LIZ- So,all the documentaries that I’ve ever watched on this subject, because they’reall pro in their basis, in their foundation, almost always show somebody’s journey,and it’s usually a literal journey to go to Switzerland to go to Dignitas.
EMMA- OrCanada.
LIZ- Well,you can’t…
EMMA- Iknow what you mean, but it’s usually these documentaries are journeys toassisted death.
LIZ- Yeah.And they’re individual, it’s an individual’s story. And I didn’t want to putanybody else in the position. I think they can be quite abusive thosedocumentaries. I’m not a fan of them. I think they can be quite exploitativethat kind of TV, so I didn’t want to do that to someone else. I wouldn’t putthem in that position of something that I wouldn’t do myself. So, I kind ofused myself and my own story.
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 everynegative thing that I’d thought, said or had happened to me she listed. And sheread it out in front of the camera. I don’t recommend that.
EMMA- Butit’s really powerful though.
LIZ- Yeah.
EMMA- Andreally kind of helped with your story, because you, Liz Carr, said “I don’t wantto exist.”
LIZ- Yeah.
EMMA- Doyou think laws, if they’d been different, anything would have happened to you?I don’t think so.
LIZ- Well,you know, it’s about suggesting, it’s about saying that in context the imagery,the representation, the idea of disability is so negative that, as a teenager Ididn’t want to go on. I didn’t want to live. And I actually say those words.And it’s about saying what happens then and raising that as a question when itbecomes easier, arguably, to end your life because you don’t believe thatyou’ve got a future. And I have seen so many media stories of people,particularly paralysed in accidents, who end their lives because they can’tbear the change and the new person that they have become. And I understandthat. So, there was a big part of trying to show I do understand that, I’ve notalways been disabled, and I wanted to die too. So, it’s about an empathy andsaying “I do see this through many different perspectives.”
EMMA- Andwhat lifted you up? What helped you to move on from those thoughts? Did shewrite that down as well?
LIZ- [Laughs]friends, love, ambition, politics, disability rights absolutely, meeting otherdisabled people who went, you know, “being you is okay, it’s enough, theproblems are the barriers in society” – all of that. And instead of me feelingthat all I could do was do physio and learn to walk again and that would be theonly 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 benefiteverybody.
EMMA- Andwhat have you learnt? I mean, you knew so much already, you’ve been campaigningabout this for so long, what have you learnt from making this documentary?
LIZ- I’mhorrified by the idea of some laws, the majority that exist in the world, beingabout an idea of intolerable or unbearable suffering. And I’ll tell you why:because if we take Canada where people have used these laws openly for thingslike poverty and homelessness, if you’re not disabled, you can’t do that; youcan’t go and say, “could you help me Doctor? I’ve had enough.” What will happenis that you’ll hopefully get support to change that situation, and you will bestopped from wanting to end your life. However, if a disabled person has thesame, exactly the same concern and issue and reason to end their life, they canqualify for euthanasia or assisted suicide. And that discrepancy is chilling tome, that the only difference between two people who are being threatened, forexample with homelessness, is that one of those people has medical conditionsand the other person doesn’t. And we will allow doctors to assist in the deathof one of those people in the name of choice and autonomy. I think that’smessed up. I think we either offer it to everybody or we don’t offer it untilwe can guarantee that we are supporting people to live. And I think that,learning that really deeply and seeing it in practice. I’ve always felt this isabout disabled people and this will be used when introduced for socioeconomicreasons, directly or indirectly. Canada proves both of those things. I likebeing right…
EMMA- Butnot on this one.
LIZ- …butin this case I really wish I wasn’t.
EMMA- LizCarr’s documentary Better Off Dead? – question mark – is on BBC One on Tuesday14th May at 9pm, and it goes on iPlayer at the same time. Liz Carr, thank youso much for speaking to me.
LIZ- Thankyou, Emma Tracey.
EMMA- Thereyou go, that’s Liz Carr there for you. Better Off Dead? – question mark – onBBC One next week. But you lucky things, you’ve actually got another episode ofAccess All coming up in a couple of days. Later this week I’ll be speaking tothe minister for disabled people, health and work, Mims Davies on a whole rangeof subjects, including the creation of the BSL advisory board. In the meantimeget in touch. Email accessall@bbc.co.ukabout anything you’ve heard today or in any other episode on this feed. Andsubscribe to us on BBC Sounds or wherever you get your podcasts. See you soon.Bye bye.
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