British comedian, disability rights campaigner and actor, Liz Carr, is performing at the comedy festival in her new show Assisted Suicide: The Musical. Photo: Josh Robenstone.
Liz Carr is an actor, comedian and disability rights activist from the UK. In late March we met at Hares & Hyenas, a queer and alternative bookstore and café in Johnston Street, Fitzroy to chat about her Melbourne Comedy Festival show, Assisted Suicide: The Musical. I wrote about her views on legalising euthanasia (she’s against it) in the Saturday Age and she presented some interesting arguments. Here’s the story followed by an edited version of our extended chat.
March 25, 2017
By Peter Barrett
Liz Carr is savouring the attention. The British comedian, disability rights campaigner and actor, best-known for playing Clarissa Mullery in the BBC’s long-running forensic crime drama Silent Witness, is in town to perform at the comedy festival. As a 44-year-old who has used a wheelchair since she was a child, Carr “loves” being recognised on the street for her television work rather than being stared at for her frail appearance.
“I’m an exhibitionist, so it is a thrill but, I don’t know, there’s a power to it,” she says. “Normally, as a disabled person you can feel that you are invisible and that people’s perceptions of you are so negative.”
Her new show Assisted Suicide: The Musical opens next week and, if things go to plan, the issue Carr has campaigned over for more than 15 years – the dangers of proposed euthanasia laws for people with disabilities – will get some much-needed public attention, too.
Later this year the Victorian Parliament will vote on a bill to legalise physician-assisted dying, designed to alleviate suffering and pain for terminally ill people in the last six months of their life. Carr’s musical, billed as a ‘TED talk with show tunes’, presents an interesting counterargument to the pro-euthanasia camp. It premiered in London last September, exactly a year after the UK Parliament voted against adopting similar euthanasia legislation (Carr and disability rights organisation Not Dead Yet were vocal opponents).
Although she has no desire to prolong people’s suffering Carr believes that legally assisted dying (a term she rejects, preferring the less “palatable” but equally descriptive assisted suicide) has dangerous consequences for people with disabilities. “Of course, we’re not coming at this saying we want people to suffer; that’s ridiculous,” she says. “We all want people to have a good death. The only thing we disagree on is how to do that and I’m not convinced that the rights of those who say that they want that end outweigh the risks of getting it wrong.”
Not only could there be tragic miscarriages of justice, she says, but the laws could change the way society views people with disabilities and even how those people view themselves. “When you talk about pain, of course, it’s really compelling,” says Carr about the pro-assisted suicide argument. “But in Oregon, USA, which is often cited as the state where there’s been legislation for 20 years now, pain figures as one of the last reasons why people want it. It’s always about lack of dignity and lack of autonomy.”
In Carr’s view, confronting loss of autonomy and dignity are part and parcel of living life as a disabled person. “Shouldn’t we be looking at ways to support people living and dying with dignity rather than making it easier for them to end their lives?
“There are compelling arguments on both sides but I don’t think we hear both sides and that’s why I made the show. But I hopefully made a show that wherever you sit on it, it’s funny and it’s entertaining.”
Assisted Suicide: The Musical is on at The Coopers Malthouse, 113 Sturt Street, Southbank, March 30 to April 9. For bookings phone 9685 5111 or see comedyfestival.com.au
edited extract of our interview
Peter Barrett: Most people know you for the UK forensic crime drama Silent Witness, where you play Clarissa Mullery. You’re about to film your 21st season when you get back to the UK – you started in season 17?
Liz Carr: 16. I’m a bit Rainman now! Since series 16. We’ve just broadcast, and I think it’s broadcast here, it’s series 20. I’ve been on the show for five years. It’s on Foxtel here and BBC first, I think.
PB: Do you get recognised on the streets? What do people say?
LC: You do get recognised, and I’ve been recognised here. The first morning here, we’ve only been here 48-hours, I was on Brunswick Street having lunch and someone came up with an Aussie voice and said, ‘You’re Clarissa.’ And that’s all of it. It’s more like, ‘Look, that’s Clarissa.’ Quite often they want to know how smart I am. Like, ‘Oh my God, you’re really smart.’ And I’m like, ‘I’m just an actor. I’m really not scientific at all!’ But it’s usually around how smart I am, or how they really think I do a great job as an actor.
It’s really lovely, it’s very lovely. It tends to be an older demographic – although not exclusively – so therefore there’s very few selfies, it’s more a compliment. And it’s fascinating for me as a disabled woman, someone that visibly looks impaired and has been ill because I’ve lived a lot of my life…I’ve been stared at and having interesting interactions with the public when you’re wheeling along. And now, particularly in the UK, it’s weird because I am stared at but I think more often than not now [it’s because of Silent Witness] and I know that because you hear the murmur, ‘She was on telly last night, she was on that show.’
I’m an exhibitionist, so it is a thrill but it also, I don’t know, there’s a power to it that normally as a disabled person you can feel that you are invisible and that people’s perceptions of you are so negative: ‘Oh, poor you.’ Or, absolutely, ‘If I was like you I don’t know how I would cope.’ So then to flip that and be a person that people want to talk to and admire … you’ve got social cachet. Being on TV has given me social cachet that being disabled negates, usually. So, I’m still really enjoying the muse while exploring my role at the moment, I think.
PB: How long have you been an exhibitionist?
LC: I think even to the degree of being the class clown at school, I certainly wasn’t to the degree I am now but to get through either a lack of access or barriers or the things that make it different to negotiate social reactions and interactions and friendships, I think there was something about being assertive and being confident in being funny, particularly, that could get you attention. So I’ve used those skills to survive and get through but I even think that although I’ve use them to survive I had them anyway because of my family and my personality.
PB: People with disabilities come in all sorts of different personalities as well.
LC: Totally and you can go many different ways with that.
PB: But it would be particularly hard for someone who was introverted who also had disability.
PB: In terms of making friends…
LC: I met with some disabled friends of mine last night, you know, and they were saying how they get tired of always having to educate people. You’re always on. You’re always the teacher because every kind of encounter is an opportunity for people to say, ‘Oh my goodness, there is a disabled person!’ We’re not there that much.
PB: Back to Silent witness. How much time do you spend working on that in your professional life?
LC: We film that from April to November and my character … I like to think of myself a little bit as M in the Bond films, in that I’m not in it massively, yet you know that I’m in it; you’re going to associate me with the show; you know if I’m not there. But that means that on the whole I film, out of five weeks per storyline, I might film for one or two weeks of that. So, I still have a fair amount of time to do other things but enough time to be an actor and that’s great because then I get the rest of my life. Because it’s such an unreal world, I mean, it really is. It’s really hard work. We start the day at 5.30 in the morning, you get home at 8 at night. It’s hard, hard work.
PB: Do still do stand-up comedy?
LC: I do it much less. I don’t do it so much. I MC gigs a lot more and I do cabaret performances more because I got really tired of doing the sort of three, four gigs a week and traipsing round. I got to my 40s and it was like, ‘It’s a young man’s and woman’s game, really!’
PB: Let’s talk about Assisted Suicide: The Musical, which is a theatre musical comedy show, right?
LC: Yes it is.
PB: Did you write it?
LC: I did.
PB: Tell us a bit about it because it’s premiered already in the UK and I read that it coincided with the one-year anniversary of the rejection of the assisted suicide bill in the British Houses of Parliament. Is this Melbourne run the second run of the musical or has it performed in other cities?
LC: We’ve done 10 performances of it so far in the UK. Three at the Royal Festival Hall, and the rest in Liverpool and Glasgow and I think Colchester, I think that’s it, actually. I dreamt it up five years ago and I had the title and the idea of doing a musical partly because of my stand-up of being with comedians who used music in their acts, they brought out ukulele, brought out a guitar, and it was amazing how that enabled them to say some quite serious things but you can say it with a ditty and it felt much more palatable. And I had tried in my stand-up to talk about this subject and to talk about my opposition to assisted suicide but really, in a 10-minute/20-minute set that’s really hard to do. And then I had this vision of a chorus line of people in hoists, the medical hoists that you might have, and I wanted to see it like 42nd Street, so people hanging…
PB: These are the hoists in hospitals used to lift people up and down on their beds?
LC: Right. And I thought, I’ve never seen that on stage. And what was happening is that in documentaries and news programs on this subject you usually saw someone being lifted onto a bed or being hoisted into a wheelchair or having personal tasks done. And I thought, ‘What if I could take something that’s seen as the ultimate in dependence and possibly, in some people’s perceptions, lack of dignity, and make it showbiz – make it glitzy? Can I do that?’ And that was the challenge. That was in 2011. And how would you get the tone right of this? How can you not be offensive? My aim was that I had talked about this subject so much and so seriously on news programmes, could I have a different conversation through theatre and art and with that open up a discussion that other mediums didn’t allow?
PB: How long have you been campaigning against assisted suicide?
LC: Probably 15-plus years. When I went to university I became politicised as a disabled person. I had a light bulb moment there I sort of went, ‘Do you know what? It’s not the fact that I can’t walk that’s the problem, it’s the fact that there are barriers in society, attitudes and systems, and they stop me doing the things that I want to do. And we can challenge that.’ But up until that point I always thought that was because I couldn’t walk that I couldn’t get up a flight of stairs or whatever. And then it was like, and you know what? If there’s a lift it really doesn’t matter. And I know that sounds simple but that changed my life. It was a light bulb moment, I totally call that. Because what it did was it also gave me community. Because whatever disabled persons different condition is, what we share, it might be a blind person, it might be a deaf person, but we all experience some level of discrimination that we can connect over. So, whether I’m in Australia or the UK or Canada or wherever I’m working I’m part of this world where we experience the world in a particular way because of who we are.
PB: So, you don’t have a political party as such?
LC: No, I mean, of course, I’m to the left of the left, I would argue…
PB: But I mean advocating specifically for rights of people with disabilities?
LC: No, I don’t think there’s one party, I’m assuming over here it’s the same where it’s really around social justice. You could argue it might be the Greens but then the Greens are very actively pro-assisted suicide so you’re not going to get everything you want from one party. I guess it’s political in a small p movement in terms of a cultural movement. And as part of that, I guess, I became aware of how within the medical profession we were often quite discriminated against, whereas actually you’d expect to be quite well looked after as a disabled person in the world, but some of the worst abuses of disabled people have occurred in the medical world.
And I guess when I started to analyse that and look at how disabled people are kind of…Look, I don’t know, I guess if there is disabled people who has been killed by their families in a mercy killing, the fact that they are let off, often, and that they don’t get same scrutiny, started to work on the fact that maybe some lives aren’t viewed as highly or as prized. Maybe there is a thing of ‘lives not worth living’. Where is that coming from? And exploring that.
So, I think when I started to get involved in disability politics it was an inevitable move to explore as part of our history eugenics, euthanasia, and the role that that’s had in our history and in our current lives what that might look like in terms of lack of resources, rationing in the health service, wherever you are in the world, I believe. And therefore, being quite concerned at giving greater control to the state, and giving greater control to the medical profession.
PB: Here in Victoria our Parliament has seen a report about ‘assisted dying’, which is different to ‘assisted suicide’?
LC: No. There is a semantic difference depending on your view, and depending on your take on the subject, I believe. Assisted dying doesn’t exist as a definition anywhere, particularly.
PB: I thought it did in terms of if you were dying from a terminal disease and you had six months to live and you are compos mentis so you could make a decision yourself…
LC: But that still assisted suicide. It’s still choosing to end your life. Assisted dying, I believe, is used to make it sound more palatable: ‘It’s only for those people who are dying anyway, and therefore…’
I think there is a political reason for using that word. I absolutely know what you mean in that, ‘Isn’t this just for those who are towards the end of their life?’ Although that hasn’t yet been defined in the work that they have done.
PB: I just think of someone who is suffering from a terminal illness and there are loads of pain and, you know, they go, ‘I know where this is going…’ In fact, the Victorian health Minister spoke about her mother who is dying of multiple sclerosis and knows where the disease is headed and it’s not pleasant. So what’s wrong with taking that option?
LC: Well, there’s nothing wrong on an individual level. And that’s the thing. Start to change and have assisted suicide as a medical option, as a treatment option, start to have it available and acceptable, and it does change the way that culture views certain groups of people. And it does change the way that you treat people. It has in all the countries, I would argue, where it’s legal. Andrew Denton takes a very different view on all of that because he’s visited them too; we’ve both visited all the countries, however, what I always feel is that I can’t listen to people…Well, I do listen to people, they say, ‘This has happened to my mum or my dad…’ Of course we all want…
PB: You empathise with what they’re going through…
LC: Of course, we’re not coming at this saying we want people to suffer, that’s ridiculous. We all want people to have a good death. The only thing we disagree on is how to do that and I’m not convinced that the rights of those who say that they want that end outweigh the risks of getting it wrong.
And there are risks to getting it wrong, and no safeguard to this day has yet stopped that. You can’t. Because it’s not that dissimilar to the death penalty, I’m going to use that phrase, in that there are always miscarriages of justice, always, in whatever country has it. Now, that’s after a full court case and a jury and lawyers have been involved.
This time were looking at two independent doctors who will assess you. There is room for mistakes, so that is for me one of the reasons, is that, can we get it right? And aren’t there risks of coercion, not because I think grandma or whoever or father is going to rush to be killed but I think you can feel a burden and you can decide that you want to go. You might fully absolutely want to go and that’s not for me to say yes or no but there are pressures that are put on people who think, ‘I don’t want to trouble anyone and my children have enough on their plate, they’ve got their children to look after now, I’ll do the right thing. I don’t want to be a burden.’ And we know that.
When you say about pain, of course it’s really compelling but in Oregon, which is often cited as the state where there’s been legislation for 20 years now, is that pain figures as one of the last reasons why people want it. It’s always about lack of dignity and lack of autonomy, you know. And in Washington State, which is the second state in the US to have it, 64 per cent of people say that it’s being a burden that has made them want that.
So, that’s it. I’m not saying this is easy. You can throw that at me and I’m like, I don’t want that for myself, I don’t want to see people die. I’ve been with people at the end of the life, you know, sitting in mess. So this is not from some wanting…
PB: Because I could imagine plenty of readers would be saying, what is she on about? It doesn’t make sense to me because it doesn’t seem like a compassionate point of view. So, I think I’m understanding where you going but you must have dealt with these sorts of problems…
LC: You’re always viewed as not compassionate. Because it must mean…if you said, ‘Do you want people to suffer and die in pain?’ Who’s going to say yes to that? No. So, the only difference is how we achieve that. How do we achieve everybody having a good death?
I happen to believe that end of life care and palliative care provides that at it’s not provided adequately. I also think that the idea of choice is a misnomer. Because most people don’t have a choice as to how they live at this point. So, it’s kind of Hobson’s choice.
Statistics in Australia where older people are killing themselves, increasing number of older people killing themselves, and there are reviews looking at that but why is that happening? That’s not acceptable. And I think it’s that having had so many people in my life, and other disabled people get this, ‘oh gosh, if I was like you I can’t imagine what it would be like.’ I just go… I know that if I went to a doctor and asked for the right to die it wouldn’t take much for them to say, ‘Yeah. Okay.’ It wouldn’t take much for that. Why is that? Instead of someone asking, ‘Why is that Liz? And what we do to stop that?’ It concerns me that we automatically say, ‘Of course, if you were in that position, if you couldn’t move from the neck down; of course, if you had that you would want to die, of course.’ It’s ‘compassionate’. And it may be, and that person may absolutely want that, but how much is also sometimes us leading it, the medical profession leading it, those around that person leading it, too?
PB: So if the state says ‘this is okay’ medically, more people are likely to give up and end their life?
LC: Because once it’s an option it’s an option. Once you know that that’s an option… I don’t want someone to suffer and this is not…I’m not religious so it’s not about ‘suffering is good for you’, that’s rubbish, I don’t believe that. I’m absolutely an atheist and I’m pro-choice. But I often believe that we don’t have choice and I think this is that.
I think what these laws do, really, they don’t give an individual choice because you can’t just go to your doctor, you know, if we’re going to argue it on an autonomy level, you won’t get the right even with this law in Victoria to go to your doctor and demand it. It’s not death on-demand. Because you think about it, you don’t get any other treatment on-demand in the medical world. Do you? The doctor diagnoses you and prescribes what they think is best. You don’t get to go to them and say I want Mogadon or I want that treatment. You don’t. So, it’s funny that we now think we’re going to get hurt with this. You don’t get that.
PB: So, because it’s the doctor that makes the decision it’s taken out of your hands?
LC: We feel that it is. You know, the ultimate fight here is that shouldn’t we have, isn’t it the last right that we should have? And actually, the last right is ending your own life. And I’m not advocating that because that’s a grim and miserable experience for anyone and their family. But actually it’s a sort of misnomer to think that this gives you that ultimate right because it will still be in somebody else’s hands. It’s more: don’t argue it on autonomy. Argue it for what it is, possibly, is that you would like a doctor to help and is that what we want?
And, in a way, why bring the show over, why bring this debate over? It’s because I don’t think that we have enough scrupulous debate in conversation about this. I don’t think all these voices are heard. I don’t think that those who oppose, other than in a religious sense, are heard.
You should be asking me the questions you asking; we should be having this kind of vigorous debate about it. It’s too important. It’s too important. This is about people’s deaths and it’s about medically assisted… It’s about doctors. With the bill that’s potentially going to be proposed, it’s not just assisted suicide it’s also euthanasia because if someone can’t do the act themselves then it would be the doctor doing it for them, as well. That’s in the bill.
PB: What can people expect when they see the show? You’re on until 9 April I think?
LC: We start on 30 March and we finish on the 9th. It’s funny and it’s thought provoking. When we took the show to Glasgow (it premiered in London and then we took it to Glasgow) I ended up at a public restaurant, or a pub and some women invited me to sit down because they recognised me from Silent Witness and all that. And, as soon as they asked what are you here for? You get that [feeling] ‘Okay, here we go’. It’s not a quick conversation. I say, ‘Well it’s Assisted Suicide: The Musical,’ and then you wait, and it’s a conversation-stopper. It was only David [James] who is in the cast who said, ‘No, it’s a conversation opener.’ For me, that’s the best description of it. I’m not the new messiah going, ‘don’t vote’ and ‘don’t do this’. I get frustrated and upset at feeling that all the viewpoints aren’t being considered. And I think the airtime, usually, and from what I understand it’s the same here as in the UK, is given to those cases of individuals asking for this right. It’s not given to the voices saying, ‘I’m scared and concerned about it’. So, even just give that equal weight. If we going to introduce it don’t be afraid of conversation, don’t be afraid of debate. Let’s consider it all and then bring it in. But bring it in full awareness and full upfront conversation.
PB: Are you saying that people view people with disabilities in the same boat as those with terminal illnesses?
LC: Absolutely. And certainly in the UK, those that are very prominent in the campaign look like me. We look disabled. Because most disabled people aren’t terminally ill. We might have degenerative conditions all ones that are seen as intolerable or suffering and the same if you’re terminally ill, you often become disabled. I guess I feel very embodied in this debate because when I see the documentaries on the subject and here the conditions being talked about, MS or whatever, it’s around people like me.
So, that’s when [disabled people’s activism group] Not Dead Yet came about in 1997 and now it’s in Australia as well; there was the campaign last year against film representation of Me Before You. We all worked together on that.
PB: So, the vote in the Victorian Parliament is looking like it may happen in the second half of this year. What would you like to see happen?
LC: I would like Daniel Andrews and the panel looking at this, I would like them to come to the show. Not because I want to sell tickets – they can have tickets, although they can afford them. That’s all I want. Like I say, I’m not coming in here as the great crusader on my big high horse or whatever, I just want…I’m passionate about the subject and I think there’s lots of different views around it. Come, it’s entertaining, it’s funny, it’s a thought-provoking show. I defy anyone to leave the show and not feel something. You might feel outrage but you might feel, ‘Oh my God, I’ve never heard that’ or you might feel overwhelmed. I’ve had all of those responses. I’ve had amazing and passionate responses from all areas and all views. I just ask, I really want them to come and see the show. And that’s it. I’m just saying, ‘think about this’. Think about it and be fully informed. It feels very rushed. Do it properly. If you’re going to do it, do it properly. And at the moment it all feels very kind of pushed through…
PB: A fait accompli?
LC: Yeah, absolutely. And as I say, it’s too serious to do that because one mistake, what do we do? Do you say no to one person who wants the right to die or do we make a mistake and one person who doesn’t want to die dies? That’s where risks and safeguards come in. You have to get it right. It’s a massive balancing act. And we really have to think. There are compelling arguments on both sides but I don’t think we hear both sides and that’s why made the show. But I hopefully made a show that whereever you sit on it, it’s funny and it’s entertaining, otherwise I wouldn’t want to do it. Do you know what I mean? I’m a performer and an exhibitionist, as we began, so I want people to get value for the ticket.
PB: Do you think that you could ever be convinced that assisted suicide is okay?
LC: I think the difference would be that even if I wanted it for myself I would not want to force a change in the law at state level, and at a national level. I would not want that. I think there’s a great difference between having an individual choice on it and wanting to choose it. Who knows? As much as people think they would want it, who knows if I got to that point, but what I wouldn’t want would be for the law to change.
I believe that I would take the law into my own hands or I would go abroad and that’s where I think it would go for me, if that happened. I don’t think it would… Do I think I would want that? No. Purely because through the work that I do I’ve had such incredible contact with palliative care doctors and people who have been with others who have had a good death. I completely believe in the hospice approach.
PB: What you’re saying is it’s already happening, palliative care deals with that?
LC: Yes, and there’s so few people that want this that it’s too dangerous. But what we’re not doing is making sure that everyone has a good death through other means of end of life care … Let’s see if we can get that right. There are too many horror stories.
Hospice can alleviate so much, there’s very little it can’t, and palliative care. I’ve seen the success of that, so I would entrust the end of my life to that way, which is why I don’t think, but that’s not to say I can’t totally, I don’t hear and I don’t get why people want it. That’s it. And I guess one thing to say is I haven’t made the show to defend or to criticise individuals’ decisions on this. That’s not me. Despite the title it’s not the show that knocks people for making that decision, it’s a show… And it’s an attention seeking title… It’s a show that says, ‘Have a think about this. Here is a different view that you probably have never heard of. Please, I invite you to think about the subject more deeply.’