The best books 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. So I took his understanding of identity and applied it to disability.

And what was the reaction to your book?

Well, a lot of people were really pleased to have a book like that out there which acknowledged this is an important part of disabled people’s lives. It certainly gave impetus to the whole area of sexuality in disability. In WHO this month we have produced a policy brief on sexual reproductive health and people with disabilities, so that very much comes out of it.

But others said, Why are you talking about what is private? Why are you talking about these experiences? So we got slammed for it as well. Our critics thought this is not what the disability movement should be doing. There are people who prefer to concentrate on public policy. Whereas I think for most people – non-disabled or disabled – having a relationship, having a family is absolutely crucial. You can live without a job but you can’t really live without intimacy.

Zygmunt Bauman’s Postmodern Ethics is your next choice.

I am very interested in ethics, particularly bio ethics. In 2000 I wrote a book called Help. At that stage I was really interested in care. Disabled people said, We don’t want care; we want independent living.  We want to be able to control our lives.  I think, well, yes of course, but at the end of the day many disabled people are receiving care in different ways. So the disability movement says we want to be able to pay for it. Give us the money and we will employ people to do it for us and that will solve our problems.

But, of course, it doesn’t really get away from the fact you are still dealing with two or more individuals in a relationship, you are still dealing with feelings of dependency, obligation, gratitude and equality. And I was very interested in those issues. When I was writing my book one of the books I read was Zygmunt Bauman’s. His theory is that we don’t have the old rules or foundations in the way that we understand ethics in this postmodern era. So how is it that we can still do this stuff? He basically talks about care for the other and about being oriented towards the needs of other people. It fits well with the feminism ethic of care, for example.

I am very interested in the question of how to live virtuously and I think sociologists sometimes shy away from that issue. Postmodern Ethics is a sociologist battling with this issue.

Your last author you describe as an obscure Italian Marxist. This is Sebastiano Timpanaro’s On Materialism.

The puzzle that I was trying to work out in my mind, and still am really, is the relationship between the biological and the cultural. In the 80s and 90s and probably still now, social science is very much about language and ideas. A lot of the time sociologists argue about ways of talking about things rather than about things. And I find this tremendously frustrating.

Timpanaro talks about nature, meaning our body and the wider environment we live in. And he says nature determines us because it constrains us. This is a reminder that we are mortal and that we are frail. Disabled people are just one example of the frailty of the human condition.

All our cultural values and ideas are about the mind, but actually we are bodies. We try to ignore that and we try to ignore people with bodies that don’t function well. But instead we should take it into account. Timpanaro talks about not being determined by our biology but, also not ignoring it.

He has this wonderful image of the old-style Marxist as the inhabitant of the first floor, shouting to people on the top floor: ‘You’re all dependent on me, all you cultural people, you need an economic base.’ And yet there is someone on the ground floor saying: ‘Hang on a minute, I am the physical reality which you are dependent on as well.’

So how did his book make you a different sort of sociologist?

My father is a doctor, so I am very interested in biology. I think at the end of the day it isn’t just ideas that influence us but hormones and the whole physical foundation, whether that is a mental illness or paraplegia or male aggression. These are all rooted in biology. Early on in my career I read this book and it struck a chord with me and ever since then I have always wanted to understand biology as part of what makes us. We are not just minds but bodies as well. And the contribution that disability can make is to remind us about the ways that bodies impinge and to challenge us to make a world which can accommodate it.