‘I’m fighting for the right to live’: Liz Carr on acting, friendship and her campaign against assisted dying
‘The attitudes, environment and systems around you are usually more disabling than your condition’ … Liz Carr in her documentary about assisted dying. Photograph: Lindsay Elliot/BBC/Burning Bright Productions
It’s a tense time for Liz Carr. “You should be in our house at the moment!” she says. Better Off Dead?, her documentary on assisted dying, is soon to air on BBC One. She is making the case against. “You’re probably thinking that, looking like me, I’d be campaigning for the choice to ask a doctor to put me out of my misery,” she deadpans near the start of the film.
Carr has wanted to make this programme for years. In 2011, after the documentary Terry Pratchett: Choosing to Die featured the assisted death of a 71-year-old man with motor neurone disease, she wrote to the BBC to say that it was its duty to present the alternative view.
Back then, Carr wasn’t the familiar face that she is now. It was before her roles in TV shows including Silent Witness, Good Omens, The Witcher and Loki. It was before her performance in The Normal Heart at the National Theatre, which won her an Olivier. Now that she has finally got the documentary done, it coincides with a new batch of celebrities – Prue Leith, Jonathan Dimbleby, Esther Rantzen – calling for the legalisation of assisted dying, backed by what seems like rising media support, as well as more parliamentary debate and steps to legalise it in Jersey, the Isle of Man and Scotland.
“It feels like it’s coming at us from all angles,” she says. “I’m so incensed that there is never any balance on this topic. Of course I’m worried I’ll be slagged off, that it’ll get nasty on social media. Will people come up to me on the street? But I worry more about my friends that are in the programme. The film is full of my world, my love and support. I feel a duty of care to them.”
Better Off Dead? takes a deep dive into assisted dying and disability. Carr believes the two can’t be separated. It’s disturbing, of course, but also life-affirming and darkly funny, which isn’t surprising; Carr was a standup comic for years. In the opening shots, she and her disabled friends remember the times they have been told they would be better off dead. One, Jamie Hale, has even had someone offer to kill him. (“And this wasn’t someone I was particularly close to,” he says.)
The film is also intensely personal. Carr looks back at her childhood and the impact of having her life turned upside down by a rare autoimmune condition at seven. It’s something she has been reluctant to share in the past. “Our perception of disability is that it’s the greatest tragedy to befall you and I don’t want to compound that,” she says. “But I did want to show that I do know how your life changes so hugely when you join that camp – the most unsexy, unfun, unglamorous group. Who’d want that?”
I know so many people who are suffering – not because of their condition, but because they need more than a 15-minute visit from a care worker
Carr, 52, grew up in Wirral and, until her diagnosis, was “the popular kid”. “I was fit, the best girl runner in the class; smart; I was in the school plays. Everyone wanted to be my friend,” she says. Her family then moved to the US for two years, for her father’s work as a research chemist. It was there that Carr became ill.
“I didn’t return home as the all-conquering ‘Wow, you’ve been to America, tell me more’ – like the beginning of Grease,” she says. “It was: ‘Eeew. You’re not the same. You’re not her.’ And I wasn’t the same. I was walking, but I couldn’t run. I struggled to sit on the floor in assembly. I was chubbier because of the steroids I’d been taking. I had a really bad rash on my face. The boys called me an impostor. Before I went to America, I had loads of friends – and then … I didn’t.”
At 11, Carr became a wheelchair user. In her early teens, a doctor told her bluntly that she wouldn’t live to be old. For Carr, the hardest scene from the programme was the one filmed in her mum’s kitchen, in which her mum reads aloud from the diaries she kept during that period, where she recorded what her daughter was experiencing. “She is very lonely,” reads one entry. “She gets very down and often says she wants to die rather than carry on, as she can’t see any good in the future.”
“I sat and listened to every awful thing that happened for the camera,” says Carr. “I had naively thought: ‘I’m in control of this,’ and then I wasn’t. I was quite damaged by it. I couldn’t tell my mum – she thought she was doing brilliantly. My mum was proud as punch!
“Afterwards, I got back to London and I was really quite ill. I felt bereft, so much more impacted than I ever thought I would be, seeing what young me went through, feeling so sad to think: what if assisted suicide had been available then? In Canada, there are moves to extend it to ‘mature minors’ [12- to 17-year-olds] – the age I was when I was saying I wanted to die.” Carr visits Canada in the film to show how criteria for assisted dying can widen. Initially available only to terminally ill people, it was extended to those “suffering unbearably”. There are now plans to extend it those with mental health conditions, as well as mature minors.
Leaving home to study law at the University of Nottingham turned Carr’s life around. “I went on a personal development course that introduced me to the ‘social model of disability’,” says Carr. “It showed me that it’s the attitudes, environments and systems around you that are usually more disabling than your condition. It can be your condition, too, but it was incredible to learn that there were things that could be changed when I’d spent my entire teenage years thinking: ‘Unless I can change, then I can’t have a decent quality of life.’”
I’m not employed for attractiveness or my conventional female appearance, so there’s no bar on what I can do
Although she was offered a paid role with a law firm when she graduated, Carr chose to volunteer at a law centre; her care package was means-tested and she couldn’t risk losing it. Her 20s were taken up with activism and travelling the world. In her 30s, she fell in love with her partner, Jo Church, and got married, became a standup and co-hosted the BBC disability podcast Ouch!. At 40, she got her role as the forensic examiner Clarissa in Silent Witness, which lasted seven years.
“I’ve never had a plan,” says Carr. “A lot of things have happened just because I was in the right place. I got an audition for Silent Witness because I was known for doing the Ouch! podcast. I know that the person who created Clarissa has a disabled son – there’s often something like that behind it. He was a genius and made Clarissa and Jack [her lab partner, played by David Caves] have such a connection that it would be really hard to get rid of me. Initially, viewers were suspicious – they thought that I must be a baddie. Then, I don’t know, people fell in love with the character.”
The Normal Heart at the National in 2021 was a career high point. Carr played Emma Brookner, a character based on Linda Laubenstein, a pioneering doctor in the early days of the Aids epidemic who was a polio survivor and a wheelchair user. To Carr’s knowledge, she was the first disabled actor to play the role in a professional production. (In the 2014 TV film, Brookner was played by Julia Roberts.)
“That role was a combination of the many things I’d done,” says Carr. “Activism, standup, acting, becoming me. It felt like it was my role and my time. My career’s getting better and better the older I get. I’m not employed for attractiveness or my conventional female appearance, so actually there’s no bar on what I can do.”
Through all this, the issue of assisted dying has been there, on her mind, in the background – but it crystallised and became urgent after the case of Daniel James in 2008. James had been paralysed during rugby training and died at a clinic in Switzerland 18 months later. He was 23. “I’m not here to judge him, but what I judged about that situation was the media response, the public response,” says Carr.
“He had died 18 months after becoming disabled. Not terminally ill – just disabled. But the press and public reaction was: ‘Of course, it’s the right things to do. It’s difficult, but it’s the brave decision.’ A disabled young man wants to end his life and we don’t question that? Nobody was asking: ‘How can we change? What must we do so that someone who can’t walk or do certain things has a quality of life that’s acceptable?’ I’d always known assisted dying was about disability – but oh my God.”
After this, Carr became “nerdy about it”. There is little she doesn’t know about assisted dying law, statistics, pressure groups, its practice and trajectory around the world. She and her wife spent their second wedding anniversary at an assisted dying conference in The Hague. “One thing I wanted to include in the film, but didn’t, was a list of conditions people have used successfully to be eligible, starting with A,” she says. “Anorexia, autism …”
Surely, though, assisted dying is about personal choice? Even if legislation were brought in and included “unbearable suffering”, which might make someone with Carr’s condition eligible, no one would be forced to take that route. “This isn’t because we think we’re going to be grabbed and taken,” says Carr. “The biggest catastrophe is that we’d choose it ourselves because there was no more choice for us.
“If an individual chooses to end their life, I’m very sorry and sad, but it’s private and personal – it doesn’t impact me. Changing the law to legalise assisted dying does. I know so many people who are suffering, not because of their condition, but because life is so much more difficult than it needs to be, because they need more than a 15-minute visit from a care worker in which to go to the loo and have a sandwich, because they’ve grown up in a world where they’ve been devalued, maybe told they’re a burden, and expectations of their lives are so low.
“I don’t understand why people aren’t fighting that. We’re talking about suffering that, on the whole, we could sort out. Instead, we can make suicide someone’s choice and feel good that we’ve supported them. Meanwhile, guilt-free, we don’t have to do anything to really change things.”
Whatever your views, Better Off Dead? is worth a watch. Perhaps the most moving scene comes towards the end, when Carr hangs out and chats with her activist friends, none of whom were expected to survive into adulthood. (“Society are terrified of becoming us,” says one. “I can’t remember the last time I could reach my own bum,” says the author Penny Pepper. “But to want to kill yourself over who wipes your backside?”)
Is Carr pleased with the final cut? “Watching it at the screening last week, I felt a real rush of pride,” she says. “For 13 years, this has been talked about and now it’s real. Being me, and constantly thinking I’m about to die, I said to Jo: ‘I’ve done it. I’ve got a legacy.’ Jo’s response was: ‘You’re so dramatic …’”
Carr’s next project is in similar territory. She will be at Galway international arts festival in July in a play called Unspeakable Conversations, based on the debate between the late lawyer and disability rights activist Harriet McBryde Johnson and the Princeton professor Peter Singer, who has argued that parents should be able to kill disabled babies. (“It’s about the same shit,” says Carr.) After that, she has some TV lined up that she can’t yet talk about: “But it’s fun stuff.”
In some ways, she will be glad when this is behind her. “It’s a tough subject, a tough campaign – you have to be so resilient,” she says. “Life is more fun when you’re not doing this stuff. Acting is what I love and what I really need to get back to. There are those that are fighting for the right to die. I’m fighting for the right to live.”
Better Off Dead? is on BBC One at 9pm on 14 May