Public image: Disability on show

Could you make money from your disability? That is exactly what some disabled people did several hundred years ago. Their stories, told for the first time in a groundbreaking exhibition shown at the Royal College of Physicians until July, juxtaposes their histories with the opinions of contemporary disabled people and explores how attitudes towards disability have changed, if at all. Annie Makoff reports

Historically, disability was seen as a sign of the devil. Much later, 18th century belief thought it was due to the mother’s vivid imagination during pregnancy which caused birth defects. The majority of disabled people therefore tended to be society’s write- offs and were either confined to institutions or left to die in poverty.

Yet, as the exhibition, Re-framing Disability demonstrates, not everyone accepted their fate: they wanted more from their lives.

Actor, playwright and focus group participant in the exhibition, Sophie Partridge says: “I was gobsmacked by the portraits we were shown. I assumed that anyone born hundreds of years ago with a disability would have been a write-off. Yet we were shown pictures of nicely dressed disabled people totally in control of their lives. I was really moved by it, knowing there was a whole history that had gone before.”

These disabled people made money by exhibiting themselves: the general public paid to stare and gawp either in private viewings or at touring “freak shows”.

Although many people today feel uncomfortable with “freak shows”, wheelchair-user Sophie believes that there is even now a fundamental power shift between the audience and the performer. In fact, one of the few freak shows still operating is the Coney Island Freak Show in New York.

Sophie, who also makes a living out of being stared at, although it’s a different kind of staring – she is a stage actress, says: “If people feel happy appearing in the shows then that’s OK. It’s like I said at the exhibition: if you’re going to get stared at, you might as well get paid for it. Besides, performers turn freak shows on its head now. They get what they want out of it these days.”

Actor Tim Gebbels (Cast Offs, Channel 4, 2010) believes that although there have been “deep fundamental changes” in attitudes towards disability, the desire to “look and gawp” is just as strong.

“People who go and watch such shows today have the same instincts and curiosities as audiences one or two hundred years ago,” he says. “I don’t necessarily think that is a bad thing, it’s human nature to be curious.”

However, it’s one thing to attract staring onstage but quite another to attract unsolicited staring offstage. One is actively encouraged, the other isn’t.

“Some people are persistently rude” Sophie says. “They just won’t stop staring. I try not to be angry because I don’t want to come across as the ‘bitter crip’. As a disabled person you are walking a very fine line all the time.”

Disabled journalist Lee Ridley agrees. “I tend to ignore it up to a point, but if they start whispering and laughing, I tell them where to go with my hands. Sometimes I just can’t help it – they can’t expect to take the piss out of me and for me to just take it. I feel like I have to respond.”

For some disabled people, particularly those with hidden disabilities, unsolicited staring is the least of their problems. Blogger and disability rights activist Sue Marsh has a rare form of Crohn’s disease. On a particularly bad day, Sue has her medications switched over to injection because she is unable to take things orally.

“Because I am so thin and I look malnourished, people come up to me and say, ‘eat a fucking doughnut,’” she says. “I heard one mother say to her child in the supermarket that if she didn’t eat more she’d end up looking like me.”

Sue recalls a time – several days after one of her many operations – when she asked a builder to move his van from a disabled parking space. “He absolutely candled me. The phrase was: ‘What’s wrong with you then, you fucking Belsen refugee bitch?’”  

Sue attributes the regular abuse she experiences to the fact that people find it hard to accept that illness and disability can affect a young-looking woman with no obvious disfigurements, who is seemingly able to walk.

“Nature doesn’t want us to accept that,” she explains. “It’s much easier for people to find a reason why I could be making it up, than it could be to accept that it could happen to their niece or child. In that way, I don’t think people’s attitudes have changed all that much.”

Tim Gebbels has had a different experience. Blind since birth, he believes that those with visual impairments are more readily accepted by society because the disability is obvious to outsiders.

“People with hidden impairments do have a great problem being understood and being perceived correctly,” he says. “The big issue for them is how to explain their needs and make people understand. With blind people, everyone says ‘ah yes, you are severely disabled, have a big fat benefit cheque.’”

This is something that Lee also relates to, although in Lee’s case society tends to notice his disability a bit too much. “There is definitely a lack of understanding about disability, especially cerebral palsy, and I think it is this ignorance that causes half of the problems,” he says. “Yes I am disabled but I’m not stupid, and I’m not deaf – I can hear what people are saying.”

On top of the seemingly intrusive attitudes which don’t seem to have changed since previous centuries, Sue is concerned that these attitudes could take a more sinister turn. Citing politicians like George Osborne and Chris Grayling who use inflammatory language such as “scroungers mugging the state” she says: “It’s become almost state endorsed: there is the sense that it is now OK to start speaking like this, it is OK to start judging disabled people. We are portrayed as a burden on the state.”

Set against a background of benefits shake-up and media spin, Sue Marsh believes control and independence are being taken from disabled people under the guise of “savings”. Added to that the concern that very few politicians are standing up for the disabled community – therefore disenfranchising a significant proportion of the electorate – the picture Sue paints is particularly frightening.

“If you are the sort of person who easily believes what politicians tell you – and why wouldn’t you if everyone is saying it? – and you believed that disabled people are a burden on society and shouldn’t be supported by the state, how far does that go? The line is very, very close.”  

Tim, who also hotly disputes the “nation of scroungers” beliefs, describing them as “cobblers”, does not agree with Sue’s concerns. When it comes to peoples’ attitudes about disability, he just isn’t fussed.

“I don’t care if society sees me as a burden,” he says. “As long as I have talking buses, or I’m not charged extra for having a guide dog in a hotel room, up yours. They can think I’m a burden if they like, it’s a free country. In that way, things have changed for the better.”

Tim believes it’s all about compliance. As long as there are laws forcing people to adhere to accessibility policies and laws preventing people from restricting access or refusing entry on the basis of a disability, it doesn’t matter to him.

“I don’t mind if I go into a shop with my guide dog and the owner is really furious because they have to let me in. I don’t care, as long as they serve me. I don’t care, as long as things are done that improve lives.”

It is a principle that works across the board – in navigating transport systems, in applying for jobs, to booking holidays, to being cast on a television programme. “It’s about normality,” says Tim. “When it becomes normal to walk into a café and there are people doing sign language or there are people in wheelchairs, the more that happens, the more people go ‘so what?’ That is habituation and it’s the same concept with television.”

Certainly in the last five years there have been some improvements towards disability on television. More disabled people are appearing in soaps (Peter Mitchell in Hollyoaks or Andy Walker in Emmerdale, for example) and there are a lot more programmes about disability issues than there were. Yet Sophie Partridge is of the opinion that programme makers still haven’t got the balance right: the portrayal of disability is one of extremes. Disabled people are either vulnerable and incapable or brave and wheeling up mountains in their chairs.

“You only have media stereotypes to go on,” Sophie says. “It’s not that I want ‘positive representation’ necessarily, I just want real representation. I have this real bugbear with wanting to tell it like it is. I don’t want to be anyone’s hero, I just want to be able to live my life.”

INFORMATION

Re-framing Disability is showing at the Royal College of Physicians in London until 8 July 2011 (www.rcplondon.ac.uk/re-framing-disability) and then at the Shape Arts gallery in Kentish Town from 28 July-29 September 2011 (shapearts.org.uk/news/newsdetail/index.asp?view=45)