Tom Shakespeare on Disability

Your first book, Stigma by Erving Goffman, had a big influence on your ideas about disability.

Yes, I went back to Cambridge to do a PhD about how to understand disability and met the sociologist Anthony Gibbons and he said: ‘What are you going to do?’ And I told him my plans. He looked at me and said: ‘Goffman’, and marched off down the street!

But, actually, I had already read this book. And what is so interesting about Goffman is that he does what sociologists should do, which is to watch and to talk to people.

He was very interested in how people are different and how they deal with that in society. He wasn’t just talking about people with disabilities; he was also talking about gay people or ex-convicts or drug addicts – anybody who is different.

For him there were two types of people: those who are discredited and those who are discreditable. The discredited ones are the people whose difference is obvious and they have to manage interaction. So they come into a room and, for example, because they have a missing arm or are black in a racist society, they have to manage the interaction with people and put people at their ease. And then you have the discreditable, who are people whose difference isn’t immediately obvious. They might be gay for example. They have to manage information to ensure that people don’t discredit them.

For me he is one of the few sociologists that you can read for pleasure.

How did you identify with him personally?

Well, I have restricted growth, so obviously I am very different and so I could identify with the experiences and strategies that he described. I was growing up in mid 1980s Britain and he is talking about early 1960s America, but there were some common social rules of conduct.

In the disability world the early waves really focused on physical impairment and things like wheelchair-users and inaccessible buildings, but what they hadn’t explored sufficiently, in my view, was the interpersonal dynamics, the prejudice or the stigma, as Goffman would call it. One of my first papers looks at cultural attitudes towards people with disabilities and this helped with that.

Your next book, Pride Against Prejudice by Jenny Morris, caused you to send a fan letter to an author for the first time.

Yes, that’s true. I was busy doing my PhD in around 1990 and that is when the first books on disability started coming out, from a social research perspective. I had already done a sociology degree so it was interesting to apply the theories that I had learned to disability and to see that they were relevant to me. With my PhD I was starting to construct a sociology of disability and then these books came along. Some of them I couldn’t relate to because they didn’t speak to my condition. But Jenny Morris’s book did.

I was really interested in cultural prejudice and the attitudes and stigma dimension and she talks about that really well. She also takes the feminism approach – the personal is political and all that. And I thought that was absolutely vital because mainly people were concentrating on the public dimension of disability, like how to get a job and a house. But there was much less work on the private dimension of people’s lives, things like feeling good about yourself, having a relationship, having a family. And Jenny’s book really did that and I just read it and thought, Yes this is it, this is exactly what I am trying to say. And that is why I wrote to her.

The other dimension that is very important is that disability scholars were down-playing impairment. They were trying to say that disability is to do with oppression – disabled people are an oppressed group rather than a group of people with something wrong with them. And, of course, that is politically extremely powerful but it doesn’t accord with how many disabled people live their lives and what is important to them from day to day.

Jenny Morris said we need to identify those disabling balances out there but we also need to realise that our impairments and our health conditions are limiting and involve pain and suffering and it is difficult. And that is exactly what I think. My own view is that people are disabled by society and their bodies and we can't throw out all of this personal dimension.

Your next book, Ken Plummer’s Telling Sexual Stories, is very much looking at the private side of things as well.

Yes. There is a huge gap in information about the personal lives of disabled people. I wanted to do some empirical research into this so I could write a book called The Sexual Politics of Disability: Untold Desires. Of course, there is this prevailing view that disabled people are asexual. And, as I tried to think through the methodology of doing this book and think about sexuality, Ken Plummer’s book was really helpful. He talks about sexual identity in terms of stories we tell ourselves and share with others. Identity is all about finding the right story for yourself and your experience. He talks about rape survival stories and coming-out stories but not disability stories.