For most of the past two years, Liz Carr has been shielding or, at the very least, being extremely careful. Today. for instance, we’re sitting outside a London restaurant near her home, even though it’s a grey and windswept day, and the hot chocolate she is warming her hands on is rapidly cooling. And so when she attended the Olivier theatre awards last month, it felt like a big deal, not just because she had been nominated for best supporting actress, but because it was the first time she had been indoors, among so many people – several thousand at the Royal Albert Hall – for a long time.

It is, to her knowledge, the first time a disabled actor has played the role in a professional production. “The thorny issue of ‘Can other people play disabled characters?’, all of that, I think anyone can play anything, but we’re not even getting in the room to play ourselves,” she says. “That’s a big issue.” Ellen Barkin played the role on Broadway, and Julia Roberts in the 2014 film. Of Roberts, she says, “I’m a fan, but what she does is she plays the physicality, she plays the illness. So you see her breathing like she thinks someone with polio breathes, and then she forgets about it. Whereas I can only play what my body can do, and I’m playing the lived experience of it. What I had in common with Linda or Emma is: I know what it’s like to be a disabled woman, and face discrimination every single day. And I know what it’s like to have your childhood thrown into chaos by becoming ill or disabled.”

Another thing they had in common was being told from a young age not to expect a long life. “I was told as a kid I wouldn’t live to be old,” says Carr. She recently turned 50, a landmark birthday she delighted in. An old friend from her university days recently told her, “You never shut up about dying,” and certainly a lot of her work has been about death – from the victims in Silent Witness, to the horrific deaths of young men in The Normal Heart, and Assisted Suicide: The Musical, which Carr wrote and performed. The effect of being told that, she says, “inspires and motivates you. I’d better get on with things. Everything I do is urgent.” She has been grateful for that. “I’m not grateful for the anxiety that comes with worrying about my health. I’d rather not have that. But the flip side is that I have lived a life so far that has been amazing.” In person, Carr sparkles and fizzes – she speaks quickly, laughs often, and although her frame is tiny, her presence is megawatt-bright.

As a child, she never thought she could be an actor because she hadn’t seen anybody who was disabled on screen. She imagined instead that she would marry a doctor so they could look after her. She laughs. “I mean, isn’t that awful?” She grew up in Wirral, but the family moved to the US for a couple of years. “I became ill in America,” she says; when she came back, and attended her old school, she looked so different one child was convinced she was an impostor. Within a few years, she would be using a wheelchair and spent her teenage years using a manual wheelchair she couldn’t push herself, and so was pushed everywhere, with no independence.

She had internalised so much negativity about disability that she refused to think of herself as a disabled person. It wasn’t until she went to university in Nottingham, to study law, that this changed. “I met other disabled people and that felt like coming home. I realised, ‘Oh, I can really be myself.’” In her second year, she went on a personal development course, where she realised anything she wanted to do was possible for her, “and that’s what blew my mind. It was my lightbulb moment, and then I got involved with disability rights and the independent living movement, and the support that you need to live.” It showed her, she says, “I could have the life that I have.”

She is keen to stress how much she gained from the show, but she did face battles. For a couple of years she couldn’t get an agent, despite having this high-profile job. “What that meant is that they got away with paying me buttons at the beginning. That never sits well, because if you really want to value disabled people, then realise institutionalised discrimination means that we’re at a disadvantage – we can’t get agents, we’re not getting the roles – so give us a help up. Once I started doing well, and the audience loved me, there was [no promotional material] I wasn’t on the front of. I’m still usually the person, the image, wheeled out when they’re talking about diversity and how well they’ve done.”

She was persuaded back to Silent Witness, and Clarissa was given a husband; she had been the only character without a love interest. “They wanted her to be dating and do that whole ‘Will he love me? Can disabled people have sex?’ and I didn’t want that.” Clarissa’s husband was initially written as an unattractive man in a sexless, unhappy marriage – the expectations of her character were as low as they had been for Carr. She has been in a civil partnership with Jo Church, a joiner, since 2010, she says. “When I got together with my wife, I was on the comedy circuit at the time, and I remember particularly the male comics being like, ‘You’re punching above your weight.’” After she complained to the writers, her on-screen husband was rewritten as suitably nerdy and lovable.

Carr’s visibility, as a rare disabled woman on primetime TV, has made her a target of horrific online abuse – though not from the fans of her shows (me included), who pretty much all love her. “When it was announced that I was going to be in Good Omens [the Neil Gaiman TV series], I’ve never had so much love.” It was the same with The Witcher, the Netflix fantasy series, which she joined in its second season. “On the whole, I do fine. But when it hits, it hits, and it’s not fun. My wife reads it and then she goes: ‘Don’t read that.’” Even recently, talking about extended mask-wearing in theatres, she has seen abhorrent online comments about her appearance. “I know what I look like; I also know why I look like I do. And I also think I’m beautiful.” How does she cope with it? “I talk about it, rather than keeping it quiet. My wife is very good for balance. She pointed out the amount of love that I had before winning the Olivier, and then winning, including so much from other disabled people.” Being an activist helps tune out any negativity.

She has campaigned for years for disability rights, and against discrimination, benefit cuts and assisted suicide. Her musical was a dark comic response to the 2015 assisted dying debate in parliament, where MPs voted against a change in the law that would have allowed doctors to assist terminally ill people to end their lives; many disabled people feared it would lead to unintended consequences for them. “It sort of broke me,” she says. “It’s a hard thing to have strong views on. You are talking about your own value, or the value of people that you hold dear.” It made her step back for a bit, but she is still involved. The issue is ongoing, with recent House of Lords debates, and she wants to put her secular view across because “opposition is marginalised to being religious in foundation. There’s a whole group of people who have great concerns about it, and they’re the ones that often sit on the edge of life and death, because they’re within the healthcare system a lot or they have chronic conditions.” Simply put, she says, “when somebody wants to end their life, we do all we can to stop that. When somebody is ill or disabled and wants to end their life, we understand it, and if anything we support it, and I think we should be really careful and interrogate why that is.”

Carr is trying to get a documentary made that she wants to call Better Off Dead. “People say that to you,” she says, with an incredulous laugh. Some people, she says, “will go, ‘You’re remarkable because if I was like you, I’d rather be dead,’ in some casual way. Wow, that’s the value of my life? That flippant comment becomes dangerous when it becomes culturally acceptable to think, because then that does impact on policy. When you start valuing people’s lives as less than, you can see why that group of people become more disposable.”

Source: The Guardian

Powered by NewsAPI.org