07th May 2024
bbc.co.uk/accessall
Access All – episode 103
Presented by Emma Tracey
EMMA- My
guest this time is Liz Carr. She’s here to talk about her documentary, it’s 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’re here, you’re very
welcome.
LIZ- Yes,
thank you.
EMMA- 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 BBC’s 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’t we?
LIZ- Yeah.
I mean, now podcasts are ubiquitous and everyone’s doing one, but we were like
the first lot of BBC podcasts.
EMMA- 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- 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…
EMMA- At
Mark Thompson?
LIZ- Yes
[laughter]. So, I had a lot of security. Now, if you don’t know what I look
like, I have limited range of mobility, I’m a wheelchair . 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…
EMMA- Ah,
they were good times. Okay then, on with the show.
MUSIC- Theme
music.
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 talk
about her documentary. Something that’s run through all of Liz’s work is her
activism and campaigning for disability rights. And one of the things that
she’s 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 BBC
One next Tuesday. And just a note that listeners might find some of the things
we 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 to
Liz all about that. Liz, you’re so welcome to Access All.
LIZ- I’ve
got questions I want to ask you but maybe we’ll do that later.
EMMA- Oh
don’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 of
questions and I was like, who, why? I was looking down at myself as if I wasn’t
there.
LIZ- That
mistaken view that it’s a conversation…
EMMA- Yeah
exactly [laughs]. No, no, I ask the questions here. No, I don’t; you can ask
what you want. So, I’ve noticed actually recently that Radio 4 etc. have
started using “assisted dying” and “assisted suicide” interchangeably when
talking about this subject, I mean obviously the subject about ending your life
with medical supervision. Why do you always say “assisted suicide”?
LIZ- Yeah,
so assisted suicide, which is obviously somebody assisting you to end your
life, and usually when we’re talking about these laws it’s 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’t. 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’s 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’s about the development of language,
but I think it’s also a bit disingenuous to use “assisted dying”, because we’re
talking about it for people who aren’t just dying.
EMMA- Shall
we talk about your documentary now? Because actually it is a really lovely
watch. You’re 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- So,
just to explain, the documentary is an authored documentary by me, something that
I’ve been pushing for for about 14, 15 years directly with the BBC. 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’s 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’s also being used for reasons
like poverty and homelessness and lack of access to the right , and
that’s happening knowingly.
EMMA- So,
explicitly, like no one is under any illusions that it is happening for those
reasons, kind of thing?
LIZ- Yes.
And people are kind of okay with that and they say that in of, I’m not a
fan of opinion polls at all, but there are people going “actually it seems like
an acceptable thing to do because reasonably we’re not going to make all these
changes, we can’t give people the benefits that they need, we can’t give people
the that they need.” And of course what we hear is “they chose it, we
don’t want to mess with their choice and their autonomy.” 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’t we offering assisted
suicide 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- In
Canada there’s an extraordinary scene in this documentary where you go to visit
Dr Ellen Wiebe, who’s been involved in hundreds and hundreds of assisted
suicides. 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 to
Vancouver, and she was my first experience of talking to someone in Canada. I
should 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 explain
that.
EMMA- No,
it added a massive amount of intrigue…
LIZ- It
does.
EMMA- …to
the scene.
LIZ- She
has a laugh that you might think is nerves, and it really isn’t, because if you
watch other interviews or clips of her on the internet she’s always like that, there’s
like cackles almost. And she is so ionate, so ionate that really as
long as somebody’s made the choice themselves and has subjectively defined
themselves as suffering then she will help them to end their life.
EMMA- Let’s
have a listen to Dr Ellen Wiebe:
[Clip]
ELLEN- Hello.
LIZ- Thank
you for seeing me.
ELLEN- Nice
to meet you.
LIZ- You
too. 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- 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’t feel comfortable dying at home; for example they don’t
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’s a
good place for some people.
[End of clip]
EMMA- It’s
illegal at the moment in the UK. The bill that’s being looked at is around
terminal illness and people who are mentally competent.
LIZ- Yeah.
EMMA- You
know, it’s not about disabled people who are not at the end of their lives. Why
do you not want the law to change?
LIZ- 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’s legal is that the doctors do the assessing and then
they do the assisting and then they do the reporting. And I think that’s
slightly concerning. Like, if I’d written my own school reports they’d all have
been glowing; nobody’s going to say I did this a bit wrong, so there you go.
EMMA- 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- Oh,
I’m asked that a lot, you know, if things changed. So, no, I believe that as
long as there’s the deep inequality and that certain people’s 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’t safe. I don’t think it’s safe for the likes of me and other
disabled 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 it
begins with disabled people, some faces that may be familiar, some people who
won’t 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’d 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- Do
people really think that? I mean, I have actually had that said to me, but I
don’t know if I believed they actually thought it; they just said it in the
moment.
LIZ- Then
why do they say it? I mean, let’s go back to a night, Emma Tracey, when we were
all together. So, there was you and me and Jo, who’s 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’m a wheelchair , Matt’s got thalidomide – so
what I’m suggesting there is a gaggle of disabled people, okay, whatever the
collective noun is for us lot, a freak of disabled people. We’re outside a pub
and there’s 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- That
is a true story.
LIZ- It’s
a true story. It’s incredibly generous, right, but a homeless person sees me as
more 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- 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 – do you see what I mean? It’s not like I
was… So, I think this prevailing view really is to the core that people
couldn’t 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’re not terminally ill, they’re not about to die; they’re actually disabled
people.
EMMA- Some
of them are, yeah. But what about, I mean…?
LIZ- No,
the majority are, that’s the thing.
EMMA- But
you’re 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’re in hospital.
Choice is a massive, massive thing for you.
LIZ- Yeah.
EMMA- I
mean, what about these people who feel like they are at the end of their lives
they’re 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’t cope with it? And
people who have watched relatives who wanted this and didn’t get it because the
law wasn’t there, and who suffered massively at the end of their lives. What do
you say to those people?
LIZ- 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’s appointment? Do you
even have a choice to get a doctor’s 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’s such
a lack of palliative care and it’s a postcode lottery that people are not
getting choice over the way that they’re ending their life. So, this is one
very particular choice. And it’s 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’re a speed freak, but they can’t do that because it would endanger the
rest of us. So, this is about that for me.
EMMA- But
a lot of disabled people won’t agree with you. Lots of disabled people have
other views on this issue, right?
LIZ- I
know, it’s 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: “you’re speaking for all disabled people.” Well, firstly I’m not; I’m
speaking for myself. But I do represent voices that haven’t 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- It’s
interesting that you should say that, Liz, because I’ve 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- For
me 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. I
think it’s 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’re miles away as far as I can see for making any kind of change to the
law.
EMMA- 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- 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’re not
getting 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 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’s have a conversation. But until that time, absolutely not.
EMMA- And
you spoke to Lord Faulkner for your documentary, and he’s a King’s Council
who’s been around for four different bills on this. Could he guarantee that to
you do you think?
LIZ- He
says the line in the sand for him is that it’s terminal illness only. And as we
say 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 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- 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’s so funny, your
documentary is quite funny because you always say, ‘This is the bit where we go
to see my mum,’ and ‘this is the bit at the end where I’m thoughtful, and my
favourite song is playing’ it’s really funny. But this is the bit where you go
and see your mum, and your mum, it’s 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- Yeah.
EMMA- You
had thoughts of not wanting to be around at that point. Why did you want to
show that entry?
LIZ- So,
all the documentaries that I’ve ever watched on this subject, because they’re
all 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- Or
Canada.
LIZ- Well,
you can’t…
EMMA- I
know what you mean, but it’s usually these documentaries are journeys to
assisted death.
LIZ- Yeah.
And they’re individual, it’s an individual’s story. And I didn’t want to put
anybody else in the position. I think they can be quite abusive those
documentaries. I’m not a fan of them. I think they can be quite exploitative
that kind of TV, so I didn’t want to do that to someone else. I wouldn’t put
them in that position of something that I wouldn’t do myself. So, I kind of
used 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 every
negative thing that I’d thought, said or had happened to me she listed. And she
read it out in front of the camera. I don’t recommend that.
EMMA- But
it’s really powerful though.
LIZ- Yeah.
EMMA- And
really kind of helped with your story, because you, Liz Carr, said “I don’t want
to exist.”
LIZ- Yeah.
EMMA- Do
you 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 I
didn’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 it
becomes easier, arguably, to end your life because you don’t believe that
you’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’t
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’ve not
always been disabled, and I wanted to die too. So, it’s about an empathy and
saying “I do see this through many different perspectives.”
EMMA- And
what lifted you up? What helped you to move on from those thoughts? Did she
write that down as well?
LIZ- [Laughs]
friends, love, ambition, politics, disability rights absolutely, meeting other
disabled people who went, you know, “being you is okay, it’s enough, the
problems are the barriers in society” – 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- And
what have you learnt? I mean, you knew so much already, you’ve been campaigning
about this for so long, what have you learnt from making this documentary?
LIZ- I’m
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’ll tell you why:
because if we take Canada where people have used these laws openly for things
like poverty and homelessness, if you’re not disabled, you can’t do that; you
can’t go and say, “could you help me Doctor? I’ve had enough.” What will happen
is that you’ll hopefully get 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’t. 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’s
messed up. I think we either offer it to everybody or we don’t offer it until
we can guarantee that we are ing people to live. And I think that,
learning that really deeply and seeing it in practice. I’ve 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…
EMMA- But
not on this one.
LIZ- …but
in this case I really wish I wasn’t.
EMMA- Liz
Carr’s documentary Better Off Dead? – question mark – is on BBC 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- Thank
you, Emma Tracey.
EMMA- There
you go, that’s Liz Carr there for you. Better Off Dead? – question mark – on
BBC One next week. But you lucky things, you’ve actually got another episode of
Access All coming up in a couple of days. Later this week I’ll 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’ve heard today or in any other episode on this feed. And
subscribe to us on BBC Sounds or wherever you get your podcasts. See you soon.
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