The Bigger Picture: Sexuality and disability - Anita Ghai

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 
b   Sexuality Research & Social Policy,Journal of NSRC
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.