for disabled people
been an area of distress and exclusion and self-doubt for so long,
that it was sometimes easier not to consider it.
Ending poverty and social exclusion comes higher
the list of needs than campaigning for a good fuck.
In March of this year,
The Institute on Disability at San Francisco State University hosted
a two-day conference, titled "Disability, Sexuality & Culture."
We reprint the conference Keynote Address here, with the generous
cooperation of its author, Tom Shakespeare.
Sexuality Within Disability Studies
1994 and 1996 when Kath Gillespie-Sells, Dominic Davies and I wrote
The Sexual Politics of Disability: Untold
Desires, we found it striking that issues of sexuality and
relationships had a low profile in the British disability movement,
and in the developing field of disability studies. It had been suggested,
by disabled feminists such as Jenny Morris, that disability studies
was reproducing the same old academic problem, of talking about
disabled people, when in reality it was relevant only to disabled
However, we felt that something
else was going on. The divide between the public and the private,
which feminists had also identified, was the key factor explaining
the neglect of issues of sex and identity within disability politics.
That is, the public lives of disabled men and women were up for
analysis, for discussion, and for campaigning. The demand for access
to public space, for an end to discrimination in education, employment
and other areas of life, and for the development of collective responses
was all about making private problems into public issues, as C.Wright
Mills stated. But the private lives of disabled women and men were
not seen as being equally worthy of concern, in most radical circles.
It has to be remembered that the
social model emerged twenty years ago, when the notion of the personal
as political was only just emerging from the women's movement, and
in Britain, where sexual repression and the double standard is the
norm. Partly, this is undoubtedly about prioritisation. Ending poverty
and social exclusion comes higher up the list of needs, than campaigning
for a good fuck, and for access to clubs and pubs.
I think the neglect may also to
do with the ways in which the disability movement in Britain consciously
tapped into the tradition of labour movement organising, and adopted
the paradigms of trades unionism and socialism, rather than the
paradigms of consciousness raising and feminism. Male, instrumental,
public, rational and material concerns were seen as more real and
more pressing than domestic issues. Looking at some of the macho
politics of disabled direct action, and at some of the confrontation-
alism and anger and bitterness
displayed by activists also gives some clues as to why relationships
and intimacy and child-rearing may not have been on the agenda.
Thirdly, I think that sexuality,
for disabled people, has been an area of distress, and exclusion,
and self-doubt for so long, that it was sometimes easier not to
consider it, than to engage with everything from which so many were
excluded. Talking about sex and love relates to acceptance on a
very basic level both acceptance of oneself, and acceptance
by significant othersand forces people to confront things
which are very threatening, given the abusive and isolated lives
of many disabled people. As Anne Finger suggests "Sexuality is often
the source of our deepest oppression; it is also often the source
of our deepest pain. It's
easier for us to talk about and formulate strategies for changingdiscrimination
in employment, education, and housing than to talk about our exclusion
from sexuality and reproduction." [Finger, 1992, 9]
the Medical to the Social Model
Seidman has argued as follows: "Sexuality is perhaps the last human
dimension that many of us refuse to grant is socially created, historically
variable, and therefore deeply political." [Seidman, 1995, 2]
But I think those of us gathered
here this week would refute this suggestion, and claim that even
more than sexuality, disability is seen as natural, and individual
and medical, and inexorable. The major contribution of British disability
studies has been to demonstrate that disability can only be understood
as the outcome of social and economic and structural relations,
not as the result of the deficits of body or brain.
Rather than taking disability
for granted, and campaigning for a better deal for these unfortunate
people with disabilities, the British approach has been to deconstruct
and challenge the ways in which society disables people and creates
the problem of disability. While the social model has been used
to highlight the failures of contemporary social organisation, the
badly designed transport, the prejudiced attitudes, and the discriminatory
employers which disable people, it needs also to be used to show
that the problem of disability and sexuality is not an inevitable
outcome of our bodily differences.
It is not because we cannot walk,
or we cannot see, or because we lack feeling in this or that part
of the body that disabled people have sexual problems. The solution
is not more prosthetics, or more viagra, or any other physical or
clinical intervention. As we argued in our book, the problem of
disabled sexuality is not how to do it, but who to do it with. The
barriers to the sexual expression of disabled people are primarily
to do with the society in which we live, not the bodies with which
we are endowed.
Let me recap some of these problems,
as recorded by the people we spoke to for our research. To be sexually
active, it helps to have had sex education at school. As Leonore
Tiefer writes, "Imagine how you would feel if playing gin rummy,
and playing it well, was considered a major component of happiness
and a major sign of maturity, but no one told you how to play, you
never saw anybody else play, and everything you ever read implied
that normal and healthy people just somehow 'know' how to play and
really enjoy playing the very first time they try!" (1995, 12)
For many disabled people, in segregated
institutions, sex was never on the agenda, and wasn't seen as being
part of the story. It also helps to have someone to have sex with.
Most people meet potential partners at college, at work, or in social
spaces. Unfortunately, disabled people often don't get to go to
college, or to work, or achieve access to public spaces, because
of physical and social barriers. Being sexual costs money. You need
to buy clothes, to feel good about, and go places to feel good in.
If you are poor, as 50% of disabled Americans are, then it is correspondingly
harder to be sexual.
More than money, being sexual
demands self-esteem. It demands confidence, and the ability to communicate.
We all know that it isn't just the size of your dick, or the shape
of your body that counts when it comes to attracting potential partners,
nor even the size of your wallet, it's what's between the ears.
If you feel good about yourself, and project that self-assurance,
it is far more likely, whatever you look like, that others will
take you seriously and see you as a potential partner. Yet disabled
people, systematically devalued and excluded by modern western societies,
are often not in the right place to begin that task of self-love
Ironically, the disability movement,
which has concentrated so hard on instrumental goals such as civil
rights and which has neglected sex and identity, may have made far
more of an impact in the lives of its participants through the increased
sense of pride and self-esteem which the participation and the symbolic
challenge often inculcates. Before moving on from this discussion
of social models of sexuality,
I think it's important to record
that my current position on the social model has moved from the
time we wrote the book. My feeling is that we cannot ignore the
role of impairment and the body in our lives. A social constructionist
approach which looses contact with the physical does us no favours.
I think we have to have a position which recognises difference,
and limitation, and the very real problems which disabled people
may have with their bodies and their lack of function.
the final talk, I added a bit here about the differences between
disabled peoplefor example I distinguished between impairment
groups, as well as on class, gender, race and sexuality. I suggested
that people with congenital impairments, people with acquired impairments,
people who become impaired due to ageing, and people with learning
difficulties will all have different issues around sexuality. The
same would presumably go for people with sensory impairments. I
also added a reference to the many peopleMorris, Crow, French,
Tremainwho have challenged the impairment/disability distinction
in various ways].
In the second
half of this lecture, I want to go on to raise two questions, and
offer one way forward. But before I do that, I want to suggest one
warning about this move to the political disability agenda, and
the social model of disabled sexuality. We do not want to reject
the idea that disabled people are victims of their malfunctioning
bodies, only to adopt the idea that disabled people are victims
of an oppressive society.
That is to say, any account of
disability has to show the ways in which people resist disabling
barriers. It has to show that people can and do overcome discrimination
and prejudice. There is a great temptation, within disability politics,
to play the game of who is most oppressed, and to speak from the
victim position, but there are costs to that game, and I believe
that disabled people have to reject that strategy, and to be proud
and strong and to celebrate our resistance and solidarity and achievement.
Do we want to be normal? I think
that in exploring disabled sexuality, we are faced by similar questions
to the lesbian and gay activists and scholars who have explored
gay and queer sexual politics. Are we trying to win access for disabled
people to the mainstream of sexuality, or are we trying to challenge
the ways in which sex and sexuality are conceived and expressed
and limited in modern societies?
One strategy would build on Wolfensburger's
notion of normalisation, and campaign for disabled people to have
access to the same sexual expression as everyone else. Many disabled
men and women follow this approach. They reinforce taken-for-granted
assumptions about gender and sexuality, but struggle for acceptance
on those terms. They might work out, and take part in paraplegic
sports, and get drunk, and beat up their partners, and deny that
there is any reason why they can't be just as machoor as feminineas
They might wear prosthetics or
use Viagra or talk about their 'supermanhood', in terms that validate
the prevailing categories and myths of masculinity and femininity
and consumer culture. But there is an alternative, which many disabled
people are reaching out for. Rather than struggling to conform and
to fit in to stereotypes which developed on the basis of exclusivity
and the body beautiful, and narrow, limited notions of how to behave
and how to look, disabled people can challenge the obsession with
fitness and youth and the body, and demonstrate that sexual activity
and sexual attraction can be whatever you want it to be.
Many disabled people in our survey
felt that conventional notions of male and female and straight and
gay did not apply to them. As one man said, "One of the interesting
things, I feel, is that with the exception of gays, males don't
get hassled, whereas you suffer a form of sexual oppression as a
disabled man. I very much see myself as a disabled man, not a heterosexual
In the way they acted, and in
the way they made love, and in the way they dressed, they felt liberated
to play with roles and images and ways of being. We can perhaps
challenge a whole lot of ideas that predominate in the sexual realm,
and enable othersnot just disabled people to reassess
what is important and what is possible.
Why should men be dominant? Why
should sex revolve around penetration? Why should sex only involve
two people? Why can't disabled people be assisted to have sex by
third parties? What is normal sex? We know that sex doesn't have
to be connected to love, and that neither needs to be connected
to reproduction, so there is nothing to limit us except the need
for respect for each other, and to look after each other's safety.
Just as HIV and the invention
of safer sex challenged gay men to use their imagination and find
new and different ways of having sex, so the limitations of impairment
should create different options, not close down possibilities. As
one disabled woman told us, "I see my limitations only as parameters:
my normality, my sexuality, to be pushed right to the edge. If you
are a sexually active disabled person, and comfortable with the
sexual side of your life, it is remarkable how dull and unimaginative
non-disabled people's sex lives can appear"
Do we want more sex? This seems
like a stupid question. We live in a culture in which sex is omnipresent.
If, in the 19th Century, people couldn't mention sex, but were everywhere
upfront about death, now we cannot mention death, especially in
California, but sex is de rigeur.
In modern life, bodily pleasures are central to consumer culture,
and consumption is the key word. As individuals, we demand the right
to be sexual and to be choose whatever form of sexual expression
or fulfilment we can find. No wonder Mike Featherstone talks about
the "market of free emotions."
In late modernity, potential sexuality
is omnipresent. We know about the fascination with gay male culture,
which is particularly a fascination about the availability of sex.
The modern media, the modern fairy tale, is about the possibility
of sexual adventure in every public place. We live in an age where
desire itself is the thing to be desired. Our book, and this conference,
are part of that. We want to sexualize disabled people. We want
to challenge exclusion. We demand the right to be hot and sexy.
Yet do we really want more sex? Perhaps because we haven't had access
to it, we've been in danger of overstating it.
Let me give you three points:
1. Most people are not having good sex, most of the time. Germaine
Greer has written about the notion that everyone is having great
sex. Media hype, Cosmopolitan conspiracy. A few great sex moments,
but otherwise mundane.
2. Sex is not that important. It's not vital to happiness. In England,
everyone laughed when Boy George, the singer from Culture Club,
said that he'd rather have a cup of tea than sex. But maybe his
heresy isn't so far from the point. An historic study in the New
England Journal of Medicine of 100 self-defined 'happy'
couples found that there was some sort of arousal or orgasm dysfunction
in the majority of cases, but that the couples considered themselves
happy both sexually and nonsexually nonetheless (Tiefer, 1995, 14).
Surveys in Britain, apparently, have found that more women preferred
gardening to sex.
3. Most people are not looking for sex itself, they are searching
out intimacy, warmth, validation, connection, relationships, and
the importance of friendships, rather than sex. They are looking
for physical touch, something often lacking in disabled people's
I want to suggest that our cultural
obsession with sex may be unhelpful. It creates a desire which can
never be fulfilled. As Zygmunt Bauman writes, "The ultimate sexual
experience remains forever a task ahead and no actual sexual experience
is truly satisfying". And if this is true for people in general,
maybe it is particularly true for disabled people.
Do we really want to raise expectations,
and pretend that it's all easy and available and straightforward
and fulfilling? To see sex as the whole story is to buy the message
of the soap opera melodrama. Perhaps we shouldn't forget to value
celibacy, and friendship, and the other parts of life.
So, having asked
some questions, let me move towards a conclusion. And here I want
to go back to what I said at the outset about the public/private
distinction. I think one of the tasks for us here, and in our work,
is to put private desires and personal relationships on the agenda
of the disability movement, to make them an arena for change.
The British disabled feminist
Liz Crow wrote: "I've always assumed that the most urgent disability
civil rights campaigns are the ones we're currently fighting for
employment, education, housing, transport etc., etc., and that next
to them a subject such as sexuality is almost dispensable. For the
first time now I'm beginning to believe that sexuality, the one
area above all others to have been ignored, is at the absolute core
of what we're working for.[...] It's not that one area can ever
be achieved alonethey're all interwoven, but you can't get
closer to the essence of self or more 'people-living-alongside-people'
than sexuality, can you?" [Crow, 1991, 13]
British gay theorist Jeffrey
Weeks has been developing the concept of sexual citizenship, which
might help us here. He talks about this in terms of finding a home
for difference, and about making a claim for belonging. There are
three dimensions to this process. First, is a demand for control:
we demand control over our bodies, over our feelings, and over our
relationships. Second, is a demand for access: we demand access
to representations, relationships, and public spaces. Third, is
a demand for choice: we demand choices about identities, our lifestyles,
our gender experiences. And while this threefold approach was developed
from the lesbian and gay agenda, I think it speaks to us here today
in the disability community as well.
And finally, I think that reconciling
the public and the private also means connecting the individual
experience of the body to the collective experience of social structures.
I find the work of Axel Honneth particularly suggestive here. He
draws together the work of Mead, and Hegel to talk about the struggle
for recognition. He develops a normative ideal of a society in which
patterns of recognition would allow individuals to acquire the self-confidence,
self-respect and self-esteem necessary for the full development
of their identity.
Honneth's model connects three
levels: the primary relationships of love and friendship; the legal
relations of rights; and the solidarity which emerges from a community
of value. For him, having legal rights is about recognition, and
is a means to self-respect. Again, he writes "to the extent
to which every member of a society is in a position to esteem himself
or herself, one can speak of a state of societal solidarity."
Our work here this week around
disabled sexuality should not be narrowly defined as a matter of
sexual desire and physical entwining. It should form part of a revisioning
of the disability movement's mission, which encompasses identity
and solidarity and rights and respect in every area of the lives
of disabled people, and which builds an inclusive community of disabled
and non-disabled individuals. It
should also form part of revisioning the role of sex in the twenty-first
conclude with the words of a disabled American whose work I'm particularly
fond of: 'Let's do it. Let's fall in love."
© Tom Shakespeare 2000
"Forbidden Fruit," New Internationalist,
no. 233 (1992)
The Struggle for Recognition: The
Moral Grammar of Social Conflicts, Cambridge: Polity.
Queer Theory/Sociology, Oxford:
Sex is Not a Natural Act, Boulder:
Westview Press. (1995)
is co-author of The Sexual Politics of
In his position as Research Development Officer of the Policy, Ethics
and Life Sciences Research Institute, Newcastle, England, he has
a brief to develop research and public debate on genetics and other
medical developments. He has written and broadcast widely in the
field of disability and genetics. Tom has a genetic condition known
as achondroplasia. He is more than a little queer!