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Sexuality and disability
‘My sexuality has never been a problem to me but I think
it has been for other people.’
Dusty Springfield
‘It is love rather than sexual lust or unbridled sexuality if, in addition to
the need or want involved, there is also some impulse to give pleasure to the
persons thus loved and not merely to use them for our own selfish pleasure.’
Mortimer Adler
‘Sexuality, for disabled people has been an area of distress and exclusion
and selfdoubt for so long, that it was sometimes
easier not to consider it. Ending poverty and social exclusion comes higher up
the list of needs than campaigning for a good
fuck.’
Tom Shakespeare
Reena, a 24 year old woman with mobility impairment could not have intercourse
with her husband of five days. The husband was feeling frustrated with each day
and was already lamenting as to why he had married a disabled girl. He forced
her to go and ask the gynaecologist, as to why she was not been able to give him
satisfaction. The gynaecologist took one look at her. Without checking her
internally, she made the following comment, ‘Oh dear, polio does this to people.
You should not have got married. Poor man! Anyway, I will write a jelly for you.
Let us pray that you are able to satisfy him, but do not hope too much.’
In the example, the young woman with mobility impairment presents us with an
unsettling moment. There is an interplay of disquieting assumptions that seem to
be framing the young woman’s experience. One would be very easily discernible
that it is the wife who is in the medical room. Thus, there is a clear
demonstration of patriarchy as the husband is pretty sure that the fault could
not have lain with him. The doctor even though she is a woman seems to
participate in this view. Further, she believes that a woman’s role in sex is to
provide satisfaction to the male partner. However, these observations have been
made on innumerable occasions. What is more significant for me is that another
source of fear, which is validated by the gynaecologist is that Reena’s
disability might have been responsible in causing her inability in providing
satisfying sexual relations. What is remarkable is that the doctor even before
suggesting a way out is echoing and reflecting society that has always nurtured
deep prejudices about the lives of disabled individuals. It has been now a
rather well documented fact that within normative society there has been a
conspiracy of silence about the sexuality of disabled people, and it is not
rated as being a high priority issue even amongst those who are active advocates
of the disabled people.
As Nishaa indicates, ‘Issues of disability and sexuality do not find a visible
space in the disability discourse in India. The movement in India has focused on
social change in terms of entitlements like inclusive physical environmental
access, employment, and so on’. While the last two decades or so have been
instrumental in bringing change in the form of equal opportunities acts, the
discourse still continues to be framed in medicalised and human rights terms.
The reasons for this neglect could be a general invisibility of disabled people
in environments that have structural amnesia and have innumerable communication
barriers.
The fact that the picture has not been very different in the West is evident
from a recent volume dedicated to disability and sexuality in which Russell
Shuttleworthb comments, ‘Historically, the disability rights movement has
focused its energy on issues more amenable to social change, such as access to
the built environment, education, and employment …. By virtually ignoring the
sexual issues relevant to disabled people, the disability rights movement thus
reinforced the individualised and medicalised view of disability and sexuality
that held sway. This resonates with what Ann Fingerc, a senior advocate of
disability rights in the US pointed out as early as in 1992, ‘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 changing −
discrimination in employment, education, and housing than to talk about our
exclusion from sexuality and reproduction' (Finger, 1992: 9). Similarly Liz Crow
a disability activist from the UK says, '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 alone - they'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). Similarly, work on gender and sexuality
has ignored disabled people’s experience of these issues.
Specifically in India, the scholars who have engaged with the issues of
sexuality have not deliberated on its intersection with disability. While John
and Nair (1998) note that, ‘a focus on the conspiracy of silence regarding
sexuality in India, whether within political and social movements or in
scholarship, blinds us to the multiple sites where “sexuality” has long been
embedded’, they however do not consider disability as one of the contested
sites. One noteworthy exception has been Nivedita Menon (2006) who in a recent
work notes the neglect of the issues of sexuality in connection with disability.
Says Menon, ‘In a culture where any deviation from a normally accepted archetype
is seen as a marked deviation, the impaired body becomes a symbol of
imperfection. The myth of the beautiful / athletic / perfect body defines the
impaired body as unacceptable and undesirable. The roots of such thinking are
found in Indian mythological instances, where Lakshmana, brother of Lord Rama,
cuts off the nose of Shurpanakha, sister of King Ravana, who is interested in
him. That the only way in
which Lakshmana can respond to what he defines as nonacceptable behaviour – by
disfiguring the ugly female monster –indicates how disfiguring, and by
extrapolation, disability, and de-sexing are equated in the Indian psyche’.
Consequently, the recognition that sexuality can and does plays a significant
role in forging personal and social identities is often overlooked. As Foucault
says, ‘How has sexuality come to be considered the privileged place where our
deepest “truth” is read and expressed? For that is the essential fact … To know
who you are, know what your sexuality is’ (Foucault, 1988). An understanding of
the self mandates an understanding that we exist only as fully embodied beings.
However the cultural devaluation and the extent to which the juxtaposition of
sexuality and disability is silenced, makes it all the more difficult for
disabled people to have a positive self-identity. The issue is not only that the
disabled person must fight to be the author of her/his own sexuality but also
must establish sexuality in the first place. What is wrong here is that the
disabled person in this society has no sexuality at all.
This kind of reasoning is echoed in North Indian Punjabi culture, where,
although girls are allowed to interact with their male cousins, they are not
allowed to sleep in the same room. Disabled girls, on the other hand, are under
no such prohibitions, as is evident from the personal narrative of Simi who
shared the following experience, ‘When I was young, I would be thrilled at being
allowed to sleep in the same room as Vipin, who was my first cousin. However, as
I grew up, I realised that this benevolent gesture of my family was to be
understood as a complete de-sexualisation of my body. Later that same cousin
once propositioned me and said that he was willing to satisfy my sexual desires,
if I promised to keep quiet and not publicise the illicit liaison’. This
reflects what Hahn (quoted in Thompson 1997) calls ‘asexual objectification’ and
also evidences the disregard of the dangers of sexual violation
to which disabled girls are exposed.
The assumption that sexuality and disability are mutually exclusive also denies
that people with deviant bodies experience sexual desires and refuses them
recognition as sexually typical despite their differences. As I have argued
elsewhere (Ghai, 2001) ‘When I was younger I could present myself as one who
copes quite gracefully with the innumerable medical problems and battle for my
strength. I never did have time for a realistic appraisal of my life situation,
which from many accounts was a relatively satisfactory and happy kind of
existence. There were times when guys on the street would whistle and make some
remarks, which in those days was thought of as harassment (No one could have
anticipated the real meaning of the term). Where my feminist friends would
protest, I could never share with them that I wanted to soak in every lustful
look. In fact, along with my only other disabled friend, I would literally
savour every obscene word. I did feel a bit uncomfortable when I started to pay
attention to women’s issues. But I loved being with my friend. Going to movies,
reading books, getting into pranks; I really thought we were having fun. But my
friend continues to get into what I can now in psychological terms understand as
a depressive phase. At that time, however, I could not comprehend my friend’s
mental state. Especially when she would tell me that all we have to do is to go
to the park, let the guys see our crutches, and we will see them run away as
fast as they can in the other direction’. Why do we have to be
handicapped? I don’t want to live as a handicapped woman. I want to be a real
woman, I want a real life, and I want happiness. How many of the nondisabled
must establish the presence of a sexuality before we go on to author it as we
see fit? And how many of us are in the position of having to prove it and assert
it every day? As Alok, a twenty year old man with cerebral palsy, says, ‘Unlike
my non-disabled peers, it is very hard for me to meet other young people who can
be prospective partners. To make them understand that I too have sexual desires
is an uphill task as the non-disabled appear very close minded to our
sexuality’. One reason according to Alok is that non-disabled people ‘do not
grow up thinking of disabled people as sexy’. Alok’s narrative reminds us that
access to sexual relationships and sexual expression are often caught in
barriers which bear a close resemblance to the ones faced by disabled people in
their attempts to be included in the ‘mainstream society’. As Steven Seidman,
reminds us, ‘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)
‘For the disabled people it is really not the bodily difference which counts,’
says Anupamad a twenty seven year old visually impaired woman ‘more than being
perfect, being sexual demands a confidence in yourself. How can I develop that
confidence without good education and a job? At least if I am earning well some
one might decide to marry me’. Material conditions thus curtail the full
expression of sexuality. However, I am definitely not suggesting that if
advocacy efforts and policy development can provide universal access, expression
of sexuality would be ensured as sexuality is further embedded in cultural and
moral issues.
When the expression of sexuality is related to institutionalised set ups such as
marriage, the issue becomes more complicated. Says Raksha a 24 year old young
woman with visible mobility impairment, ‘Society still thinks that if I am not
married, I am not entitled to a sex life. This realisation is very painful as I
am also like everyone else with the same bodily needs like any other woman’s
inside. Consequently, I am forced to look for relationships which are under the
cover and while my desire does get gratified to some extent, isolation of my
life does not go away. Also, I am always scared as to what would happen to me if
they were to discover that I have crossed my boundaries.’ Resistance under such
circumstances is fraught with turmoil. As Sneha puts it, ‘Even if I am ready to
break away from the codes that have been imposed on me, how do I go about
searching for a partner? My dad’s younger brother once suggested that he might
be able to “help” me , but you think I can complain about him to my parents? I
am doomed either way as for them the need to feel good about oneself cannot be
associated with me. I feel that they have always devalued me so much that I have
no clue where to look for love and acceptance’.
As Leonore Tiefere 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). She highlights the critical role that sexuality education can play
in assisting disabled people assert their sexuality. Most disabled people grow
up without receiving any form of sexuality education at school or home. This is
assuming that they are not actively discouraged from the idea of sex altogether.
It is difficult to place the onus on any one agency in particular, for excluding
disabled people from in-depth sexuality education. Is it the government, is it
schools themselves, be they mainstream or special, is it disability
organisations and campaigners, or is it families and caregivers? The truth is
that all parties bear responsibility. As Radha says, ‘There is a general feeling
that they don’t have the education they need and have a right to, she says,
adding that she has encountered students who do not know the basic facts about
sex and are hence vulnerable to abuse.
Seema a hearing impaired girl says that only sexuality education she ever
received was from her peer group. While she had been told about menstruation by
her grandmother, no one ever discussed the issue of womanhood. ‘Consequently,
there were no opportunities to talk about sexual issues. In any case without any
one consenting to marry me, what is the advantage of knowing about sex? Society
still thinks that people like me are not entitled to a sex life? I find this
very frustrating as my body is just like any other woman’s, inside’. The fact
that they can be vulnerable should indicate the need
for teaching those with disabilities to have appropriate and safe sexual
relationships. However we often find that programmes on HIV as well as STD do
not adequately cover the issues of disability.
Dr Tom Shakespeare, one of the authors of The Sexual Politics
of Disability says more specific information must be made available. ‘There
aren’t enough initiatives, and I don’t think the ones that exist have been
mainstreamed,’ he says. ‘Sex and relationships is an area most people feel
insecure and uncertain about, particularly disabled people’. He says there is
‘no excuse’ to ignore disabled people when educating youngsters. ‘I think a lot
of parents are anxious about their disabled child being sexually active, so they
think it’s better for them not to know about it’.
However, many people still hold misconceptions about sexuality among
developmentally disabled people, including the caregivers and parents of people
with developmental disabilities. A closer analysis reveals that parents
internalise the societal conceptualisations. In the case of developmentally
disabled people the image of them being ‘eternal children’ is very powerful. I
think sexuality education needs to address the
fact that there is enough research which proves that developmentally disabled
people are learning all the time about many vital areas of life which includes
sexuality. They are fully capable of registering the difference between ‘public’
and ‘private’. For instance, they do learn that it is appropriate to masturbate
only in private places.
It is only by challenging prevailing socio-cultural values, and the binaries of
‘normal’ and ‘abnormal’, that disabled people can resist normative constructions
of them as dependent, asexual or deformed, and begin to forge new identities. We
need to contest the notion that biology is a given destiny and identity is
always fixed. Though the task may appear formidable, the recognition that our
knowledge of the world is a matter of constructed meanings, and not irrefutable
facts, will provide the catalyst for change. Media has a very important role to
play in rethinking sexuality issues.
As disabled people, the invisibility of our lives becomes heightened by the fact
that popular advertising implies the belief that the ‘normal’ body is that which
is desirable. That there is an ideal weight, ideal size, ideal colour is
emphasised by the media time and again. Once these messages become internalised,
disabled people get trapped in subscribing to the non-disabled ‘norms’.
Consequently, comfort
and health may be sacrificed as there
is always an attempt to be identified
as ‘normal.’
Since disabled people exist in society
as an excluded category, the struggle
is onerous and often seditious.
When Foucault says that bodies
are a battlefield, he is pointing out
that we are intimately involved in
conventional social practices. If certain identities are to be
permanently disabled this means a direct challenge by those
who are willing to bear the costs of transgressing their own
customary identities. Unless these activities are valorised as
political action on the individual level, oppressive practices
will go on. It is only when we are persistent in refusing to
live with the images that society has of us, can we fight the
often insidious battle of expressing sexuality.
To conclude, I quote Tom Shakespeare (2000) again.
He says, ‘Our work … 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 century’.
a See
http://www.infochangeindia.org/agenda4_15.jsp
b Sexuality Research & Social Policy,Journal of NSRC http://nsrc.sfsu.edu
c Anne Finger, Forbidden Fruit, New Internationalist, No. 23,1992
d The narratives reported in the paper are from an ongoing research study on the
sexuality issues of disabled people
e Leonore Tiefer, Sex is Not a Natural Act, Boulder: Westview Press, 1995
Dr Anita Ghai is a Senior Reader in the Department of Psychology,
Jesus and Mary college, University of Delhi. She researches the area of
disability focussing especially on education, health and gender. She has
authored (Dis) Embodied Form: Issues of Disabled Women and co-authored The
Mentally Handicapped: Prediction of Work Performance. She travels widely to
create sensitivity about disability issues and is on the board of several
organisations that promote the rights of disabled people.
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