Children are born with impairments but disabled by society, Tom Shakespeare tells Ayala Ochert in our series on young researchers
When Barnardo's conducted a project last year called "What works for disabled children?" parents, teachers and doctors were canvassed but not the children themselves. And, says Tom Shakespeare, that is an approach guaranteed not to work.
A member of Leeds University's disability research unit, Shakespeare took a look through two decades of research involving disabled children and found the Barnardo's case to be typical. "Almost none of it was from the perspective of disabled children," he says. But now he hopes to put that right by mounting a research project that directly asks disabled children about their lives.
Although academic work looking at disability is not new, until recently most research has been done by medics. "The idea that disabled people are the best experts on disability is a relatively new thing," says Shakespeare. His insistence that academic work on disability must start from the voices of disabled people occasionally finds him out of favour with fellow researchers, but he argues that "disabled people are all too familiar with sociologists colonising their experiences".
Shakespeare's project is part of the growing field of disability studies, which models itself closely on feminist studies. Just as feminist academics drew an important early distinction between "sex" and "gender", so disability studies draws a similar distinction between "impairment" and "disability".
"The social model of disability says that although impairment is the medical, physical thing - my impairment is achondroplasia (dwarfism) - disability is a social experience. It differs in different cultures, different classes, different countries," explains Shakespeare. "So the social model says that what we ought to investigate are the barriers for disabled people - like the lack of accessible transport, accessible housing, discrimination in employment - all these factors are what makes life being disabled difficult."
But real life, Shakespeare acknowledges, is sometimes reluctant to conform to an over-simple social model. Earlier this year, while addressing a conference entitled "Doing disability research", he was unable to take the podium because of back problems that have developed as a result of his impairment. Instead, he gave his talk from a horizontal position, and found himself posing as an illustration of the limitations of theoretical models.
Disabled rights activists do not always acknowledge these limitations. "The activists have a very clear rhetorical model, where you don't talk about impairment," says Shakespeare. "So while few feminists would now hold to a rigid sex-gender distinction, the disability movement - because it is less developed - still holds to a rigid social model."
Shakespeare's own family is an excellent illustration of the social model of disability - the problems he has experienced have stemmed from "hostile attention and patronising attitudes". One of his nine-year-old daughters, Ivy, also has achondroplasia and, though fit and well, also experiences prejudice. "What will hopefully come out of our research is some understanding of the way in which children with impairments become disabled," says Shakespeare.
As well as illuminating these theoretical insights, the study aims to identify the more everyday, practical problems in the lives of disabled children. Often, they spend a lot of time in hospital and are likely to be "segregated" in special schools. "They're pulled out of their communities. They don't have a peer group in their neighbourhood and they don't go out to play in the streets - not because they can't, but because they're bussed across town, getting up at dawn and coming back late at night from a special school."
It is not surprising that Shakespeare has developed an interest in issues concerning disabled children - he has two of his own. But another of his passionate interests, the science of modern genetics, stems from "outrage". He perceives dangerous implications in genetics for disabled people. It is already common to screen foetuses for the chromosome abnormality which causes Down's syndrome, allowing parents the choice of aborting them.
"We haven't decided as a society whether we should terminate people just for being disabled. Disabled people are not on the commission for human genetics so it is left to non-disabled people to say how tragic it is to be disabled, and therefore we should stop disabled people being born." But this perception does them no favours. "If they listened to disabled people, they might learn that it's not so tragic, and that maybe we should do more to increase the possibility of disabled people living worthwhile lives, rather than stopping them being born in the first place."
Back in 1995, Shakespeare made the Channel 4 film Ivy's Genes, using his daughter to highlight the dangers to society of trying to eliminate disabled people. "Ivy, who was seven when the film was made, could not understand why society would want to get rid of people like her," he says. He is no stranger to television and is working on another film as well as a novel. He believes in the importance of disabled people being visible. "If I go on TV then people will realise that disabled people can be academics, and that's good, even if it just challenges a few ignorant people."
But over and above challenging negative stereotypes, appearing in public is also an expression of "pride". The parallel with the terminology used by gay rights activists is no coincidence, and disabled people now also talk of "coming out" and challenging the view that that they are "sick" or "deviant" just as lesbians and gays did before them. "'Coming out' means saying my problem isn't my body, it's the way society treats people with this sort of a body."