It couldn’t be timelier. Just a few days after the highly controversial Hollywood film about assisted dying, Me Before You was released across cinemas nationwide to widespread horror amongst the disabled community, David Hevey’s film about the debate on disabled people and their right to life premiered in London on June 9th. Hevey’s film is part of Exceptional and Extraordinary – a series of commissions awarded to artists at the forefront of disability arts work and political commentary by Leicester Universities’ Centre of Research for Museum Studies.
Sat opposite him, I assume Hevey is part of my gang: the invisibles, whose disability resides within, hidden from the public gaze. I admit to being a little taken aback when he confesses that he does not necessarily self define as disabled, per se, because in his career, as he often says, he isn’t the story in much of his output. But it doesn’t take much explanation before I understand how he fits into the Exceptional and Extraordinary narrative:
“When I was young, I was from the underclass, so one of seven, council house, old man was in chaos, mother had breakdowns, every ism, I was it, right, and just when it couldn’t any worse, I became an epileptic at 14 and, as far as I was concerned, I was a couple of stops away from the mental home, and dying, really. I got kicked out of school because of epilepsy and I end up in a factory, I was the lowest of the low and then I thought, it’s only a year or two before I die, and then I was put on medication. The doctors told me I had brain damage, I had fits all over the place, ironically, just as the world fell apart, I got good at art, the old epilepsy as visionary thing, really weird.”
After blagging his way into art school, Hevey began making work about the disabled experience, which was not without its challenges.
“Once I was at a major exhibition, major gallery and the curator came over to me and said, “What’s all this disability thing?” – like I’d played the system. I went, “nine fits a month”, and their jaw crashed. But on the other hand, millions of people face barriers, it’s not just me.”
“I have to say when I recruit for a project, my real question is, ‘do you know what a barrier is?’ Tell me what a barrier is, tell me in your life what your barriers are, because if you can focus on that, you’ve got a bit of fight. They’re the people I look for in employment, that’s why I employ loads of disabled people, because they get it, they get we’re on a search here, it’s not going to be easy, but we’re going to fight, so facing barriers can be a positive thing.”
Hevey may have been lucky enough to find management for his epilepsy so sophisticated he now no longer experiences seizures, but he hasn’t forgotten inhabiting a space where barriers are real, daily occurrences. And his current film, The Fight for Life, tackles arguably the most looming and sinister barrier of all: “the useless eaters, the ‘are they worth it?’ debate.”
“My film examines bioethical, biomedical and general care – the contested arena that disabled and marginalised people face. Basically, when it comes to medical assessment, and assisted dying legislation, there is a general feeling creeping in that defines disabled people as worthless. And I’m looking at how that’s played out in the agendas arriving within medicine and bioethics.”
Hevey’s work is not one of presenting a neat, liberal agenda, and he hopes through his film, he will be examining the modern experience for disabled people from a number of angles.
“Baroness Campbell uses twelve machines, so she’s an exemplary model of how you can extend and empower disabled people through technology, so there are pluses and minuses in the debate. People like Tom Shakespeare are in the film talking about how there’s no problem, it’s all looking good for disabled people because of technology and the Hippocratic oath, and the medical professionals are all liberal. Others, like Paul Darke, say that’s nonsense, it’s actually a darkened sky, there’s a withdrawal of service, there’s less money and there’s an encouragement to die by assisted dying.”
One aspect of the work that is for certain, though, is that Hevey’s film sits firmly within the social model of disability.
“I’m a fan of the barriers narrative. I think that it’s very important for everybody to know the barriers that people face… and I mean with regard to class, race, gender, sexuality… If you don’t know the barriers, you’re on the side of the privileged, and there’s nothing wrong with privilege so long as you’re conscious of the power you have. So I’ve very much been a fan of the Social Model of Disability for twenty, thirty years.”
“The medical model is disastrous for everybody, because it’s anti-dependence, it over-privileges a medical reading of disability, it over-privileges medical science, for all its flaws, so unless there’s an empowerment model somewhere I don’t see it going away. Years ago, I made a documentary for a series for BBC One and one of the documentaries was about care and cure, and we couldn’t get any disabled people to come on the documentary and say ‘I would love to be cured’. And we told the BBC this, and they were like, ‘of course you can’, I went, ‘no you can’t, because people with an impairment know the issues are to do with society and barriers and access’. Disabled people don’t go around thinking, ‘If only my spine would re-join up’, they go around saying, ‘What’s the wheelchair like; what’s the job like; what’s the location like; where’s the steps into the building; why isn’t there a ramp?’, so, the ‘what barriers you face’ question unifies all sorts of groups… so that’s Social Model thinking.”
Museums are an intriguing choice of venue to premiere a film highlighting the issues associated to assisted dying, and the contemporary disenfranchisement of disabled people. What makes museums a fitting space for such a live issue, places that are, perhaps, associated more with the past than the present?
“Paul Darke, in my research, calls museums a history of failure, because they haven’t sorted anything out. There’s still a disabled apartheid in Britain. But I found them very interesting, essentially progressive places, with fascinating artefacts, so it was a great privilege to go around those places”
“I don’t blame museums for not having disabled people tell their stories, but that’s what makes me think, ‘hang on, who’s the witness in history, when in this story, it’s actually about disabled people’. Where is our thinking with regard to medical and bioethical issues without a disability perspective? I found a lot of people I spoke to found the museum thing not entirely relevant. What is evident now, I think, is how we’re moving backwards towards attitudes from the past. So the museum being in the past, makes a fascinating trigger to reflect on how we’re embracing, once again, attitudes and ideas from the past.”
And it’s important that we understand this in order to turn the tide and prevent attitudes to disabled people from continuing to wheel backwards. Hevey explains that he doesn’t make ‘straight’ documentaries. He believes that to tell these stories with integrity, there has to be craft in the filmmaking to allow the piece to provide true and greater empowerment of the contributors.
“I don’t just turn up and film. I was talking to someone yesterday who’s going to talk about their partner in hospital. Their partner is a very famous disabled person, and every time this guy’s partner’s in hospital, they put ‘Do not resuscitate’ notices all over her bed, so he has to come take them off and put her PhD and her Baroness certificates all over her bed. He’s very clever. He’s disabled himself, and he wouldn’t do that if he didn’t think there was a threat.”
“Now, I’m going to film him in his best suit. People project opinions. If I filmed him in his cardigan, they’d think “it’s not right, but it’s your fault’. Blame for having an impairment is so often projected onto disabled people; so you have to be aware of not only the story that you tell, but how the individuals look. I have to consider how to show oppression without showing victims, and the methodology I use is to talk about the oppression, but get the shots to be empowering. So it makes it feel like, “Ah yeah, good for them, I hope they win”. So there’s a kind of theory of filmmaking in it too, it’s not just a straight documentary.”
David Hevey’s The Fight for Life is part of a new project initiated and led by Research Centre for Museums and Galleries (RCMG) at University of Leicester called Exceptional and the Extraordinary. Four artists have partnered with eight museums to respond to medical museum collections and create artistic works for public presentation this June.
The Fight for Life premiered at the Hunterian Museum in London, and tickets for this, and all the other performance events, can be bought via Eventbrite. Tickets are £5 for concessions and £10 at full price. Companions for disabled ticket holders go free.
For a full list of the upcoming events, including more chances to see David Hevey’s Fight for Life, can be found in DAO’s listings pages and on the University of Leicester’s website.
Follow @UnrulyBodies on Twitter for updates, news and information about the Exceptional and Extraordinary project.