Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition
Link to the Better off Dead? documentary (Link)
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| Liz Carr is on the left |
Carr was interviewed by Anna Moore for an article that was published by the Guardian on May 14 titled: I'm fighting for my right to live.
Moore asks Carr about the timing of her documentary, Better off Dead? Carr responds by saying that she has wanted to do this since 2011, and then she says.
“It feels like it’s coming at us from all angles,”
“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.)Carr grew up healthy. At the age of 7 she went with her family for two years to America where she became ill from a rare autoimmune condition called arthrogryposis multiplex congenita. Moore explains:
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?”
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!
Carr points out that Canada is considering extending euthanasia to "mature minors" when asked the question - what if assisted suicide had been available then?
Moore provides significant information about Carr's education and the development of her professional acting and comedy career. Moore then comes back to the issue of euthanasia and writes:
Through all this, the issue of assisted dying has been there, on her mind, in the background – but it crystalised 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.”
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.
Carr is proud with the final cut of the documentary, but she is not done with the issue. Moore reports:
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.”
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