Ben Cowles talks with LIZ CARR about politics, assisted dying and the inspiration for her new musical
ASSISTED dying is legal in only a handful of countries. Proponents of the policy believe that people with severe terminal illnesses should be allowed to have a licensed doctor end their lives if they so choose.
A common assumption among liberals is that only the deeply religious or wildly conservative would oppose such a thing. Not so.
In fact it was only a year ago that Parliament overwhelmingly voted down a proposed assisted dying Bill.
Last week I met with Liz Carr, the comedian, actress and disability rights activist who campaigned so vigorously against the Bill to talk about her new show Assisted Suicide: The Musical.
“Nobody could have planned that,” Carr says on the cosmic coincidence of the musical being held on the anniversary of the Bill’s defeat. “It feels right, but not in a gloating way. This isn’t a thing where there’s winners and losers.”
A prominent campaigner and defender of disabled people’s rights, Carr has worked tirelessly to highlight the struggles her community faces including against the brutal austerity measures the previous coalition government introduced and heedlessly continued by the Tories.
While society debated the assisted dying Bill last year, Carr tells me she spoke at Marxism conferences, talked to both the Labour and Tory parties, and even, she somewhat embarrassingly admits, wrote to Cameron. “Do you know what that took for me to do that? I prostituted myself because I knew he watched Silent Witness.” She shudders at the memory. “I used myself.”
In 2006 she was working on the BBC’s Ouch Podcast, a satirical show which discussed disabled people “in a way that hadn’t been done before.”
Whenever the BBC needed a spokesperson on disability issues during that time, Carr says the producers would often seek out the Ouch presenters. “When it came to talking about assisted suicide, I got asked to do a few things. So I went from generally being interested in this topic to being invited onto shows like Newsnight.”
You might have noticed that Carr does not use the term assisted dying. “I call it assisted suicide because, whatever your reason for wanting to end your own life, it’s called suicide. That’s not judgemental, that’s just what it is. When you call it assisted dying, I think that’s a political move to make it sound more anodyne.”
Her opposition to assisted suicide is not religious or spiritual or even moralistic. In fact, Carr clarifies, “I am not in principle against supporting people to end their life, but I am in reality. There’s the moral, what we think is a good idea, and then there’s pragmatism.”
“It maddens me that at a time when the NHS — the beloved, the fallible, the overstretched NHS — is in crisis that we are considering giving them the power to assist some people, not everyone, to end their lives.
“At the moment it’s a choice between lying on a stretcher in a corridor, being denied the drugs you need to extend your life because the government can’t afford them, or wanting to die at home. But you can’t have that because there’s not palliative care and hospice care isn’t on the whole supported by the state.”
Choice and autonomy are often given as reasons for legalising assisted suicide. Carr intensely disagrees: “If this is about autonomy, then surely handing over the decision of whether a doctor will help you end your life to a government is to lose autonomy, and this is a government we don’t trust.
“No-one has true autonomy anyway. It’s a laudable value to have as human beings, but it’s linked to wealth and privilege, and as long as we live in a world where people do not have choice over their lives, then don’t talk to me about having choice in death.
“Until we value ill, older and disabled people as equals; until there are no more hate crimes; until their deaths or murders are no longer portrayed or perceived as mercy killing, and until there’s real equality and validity for those groups of people, then maybe we can have that conversation. But we are not mature enough as a society to let licensed doctors end some people’s lives.”
The idea of dying at home surrounded by your family members certainly is better than spending your final hours in an underfunded hospital at the hands of exhausted and demoralised junior doctors. “Even if assisted suicide were legalised, it certainly won’t happen how most people expect. It’ll happen down your local NHS centre, outsourced, and privatised.
“It won’t be beautiful. You won’t be able to get an appointment. And if you do, it’ll only be for ten minutes. It’ll be ‘Virgin Assisted Dying.’” A grim picture indeed.
Carr insists that the kinds of people the media portrays as seeking out assisted suicide usually aren’t terminally ill but disabled.
“One thing stands out to me whenever I see documentaries or news stories on the topic is that they usually show the disabled or ill person looking incredibly vulnerable, usually semi-naked, having something done to them like being bathed, as if they want to show the indignity of that.”
For Carr it seems as though the media wants able-bodied viewers to put themselves in the disabled person’s shoes and to think: “If I couldn’t wipe my bum, if I couldn’t pee on my own, I’d want to end my life.
“And that’s the tragedy for me. The press and many of the public will say that assisted suicide is a brave thing to do.
“And often they show someone in a hoist where you’re suspended and exposed. I think it’s perceived as probably the most dependency-creating and humiliating piece of equipment, far more than a wheelchair, because you’re probably naked and being hoisted either from the bed to the toilet or the shower, so there’s an inevitable intimacy. There’s nothing inevitable about needing a wheelchair or a hoist that means your dependent. It’s the perception we’ve put on it.”
Assisted suicide might not seem like an appropriate subject matter for a musical, but it was while gigging as a comedian that Carr discovered the comic power of music.
“Whenever somebody brought out a guitar or a bloody ukulele on stage, they could be quite rubbish, but they were guaranteed laughs and applause.
“I realised you could say anything if you put it to music. So it would almost be like, ‘Anal rape, anal rape, doo, doo, doo,’ And people would be singing and clapping along.”
Soon after this revelation, Carr began to notice how documentaries on this subject use music to guide the viewer’s emotions.
“Music is used to tell us how to feel about something. So you would watch these documentaries and there would be the saddest music and it was somebody looking out at the world going by.
“But there’s something about the clapping along at a musical — you see I love a musical; I love being told what to think, weirdly.
“I struggle with regular theatre because it’s too confusing. But with musicals, I’m guided through and I like that because I know what to feel through the music more than listening to the words.
“You can be clap, clap, clapping along to almost anything and you don’t realise what you’re clapping along to. I like that because, with assisted suicide, the majority of people are clapping along, thinking this is a great idea but they’re just going along with everybody else rather than thinking for themselves.
“And then I got really excited about the idea of a chorus song of people on hoists, and then the musical was born.”
As with anything political, there are people on both ends who feel very strongly about the legalisation of assisted suicide. But it’s the people in the middle, the “people who by default think assisted suicide is surely a good thing to have,” that Carr hopes the play will speak to. “It’s those people to whom I want to say, ‘This is more complicated and more nuanced than I think we’re presented with in the press.’”
“The problem with disability is social oppression, not disability. The solution to that is not to kill a person; it’s not to give them easy access to end their life. It’s to look at the reasons why that person wants to end their life. And are we doing everything we can?
“I don’t have all the answers, but I hope the show provokes thought and debate. And as a performer I hope we give them a really good show.”
Assisted Dying: The Musical will be shown at the Royal Festival Hall this weekend. For tickets see