Tom Shakespeare: disabled people face medical and social barriers

Tom Shakespeare is a well-known public intellectual, a frequent contributor to debates on disability, genetics and other aspects of medical ethics. While he hoped that he was blazing a trail for other academics with disabilities, he told Times Higher Education, he believed that his own achondroplasia – a genetic condition that leads to short stature – had proved “not a problem and even an advantage. I am distinctive. People haven’t seen somebody like me before. They remember me.”

Nevertheless, he said, “I actually prefer doing radio to television. One of the reasons is that, on radio, I’m sure that I’m not there just because I look odd.” 

Last month, Professor Shakespeare – currently professor of disability research at the University of East Anglia – was one of 76 new fellows elected to the British Academy. Since he was “99.9 per cent sure I’m the first who is above all known as a disability studies person”, he regarded it as a tribute to the development of his discipline as well as himself.

A pioneer since he did a PhD at Cambridge on conceptualising disability, he looked look back on substantial progress in terms of research and conferences, and was not too worried that there were still no “specific degrees in disability studies”.

Like all vibrant disciplines, disability studies has had its share of controversies. Professor Shakespeare has had arguments with fellow academics and activists who had “challenged the medical model of disability and replaced it with the social model of disability. My work has been saying, ‘It’s more complicated than that. Disabled people have medical and psychological issues as well as the social barriers they face.’ And sometimes that’s unpopular with activists who want to blame everything on society.”

Equally controversial was Professor Shakespeare’s involvement in the Policy, Ethics and Life Sciences Research Institute, which he helped set up at Newcastle University in 1999. It conducts studies on genetics and reproductive medicine.

“I’m pro-choice,” he explained. “I’m not against prenatal diagnosis, for example, or someone having a termination on the basis of disability.” Yet this had brought him into conflict with people who were “so positive about disability that they feel very challenged and hurt when others feel they don’t want to have a disabled child” and “didn’t like [him] working with geneticists”.

Despite all the progress and healthy (if sometimes fierce) debate within disability studies, Professor Shakespeare was disappointed about one thing. In 1996, he and two colleagues had published a book called The Sexual Politics of Disability. When he returned to the topic for a paper published in the Scandinavian Journal of Disability Research this year, he was startled by the lack of further research that had been done.  

“It’s almost tiresome,” he said. “Back in the day, we were saying: there’s this myth of asexuality, that disability and sex have nothing to do with each other, and that it’s almost offensive to put them in the same light. We thought: we’ll write this book, we’ll explode that and it will all be fine. That was a bit naive, because here we are, 20 years later, and you still read articles about the taboo around disabled sexuality. You just think, for goodness’ sake! There’s a considerable amount of evidence that disabled people do have partners, do have children, do get on with it. Why do we still have the idea that it’s impossible?”  

More than that, Professor Shakespeare was intrigued by “the emerging evidence that disabled people are slightly more likely to be gay or bisexual or lesbian than the average. If so, that’s interesting. You could say it’s about people being slightly liberated from conventional gender norms. I’d love to have people do more research in this area.”  

A number of other uncomfortable but important topics, in Professor Shakespeare’s view, also required urgent investigation. One was the question of what longer lifespans meant specifically for people with existing disabilities: “If you’ve got cerebral palsy, your joints will now wear out. If you’re blind and manage very well with your hearing, what happens when you lose your hearing? Or vice versa.” A likely future of “more older people, more disabled people and fewer working-age carers” presented huge challenges.  

Equally disturbingly, he said, we live in times of “rising awareness of hate crime against disabled people, though we don’t know if it’s an actual increase. I want to know about the perpetrators. Why is it that people victimise disabled people? What is going on in their heads? And how can we make it less likely that they [continue]?”

matthew.reisz@timeshighereducation.com