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‘How do you do it?’: The politics of disabled sex

By Richa Kaul Padte

A more inclusive and diverse understanding of sex is bringing queer theory together with a disability-rights discourse to legitimise what was previously considered ‘deviant’ or ‘incorrect’

disability and sexuality

If I could go back and counter the dialogue my mother and all the fiction I consumed taught me, I would tell myself a few sexual truths. The truths that media conceals with its over-sexualisation of everything and its overemphasis on a body beautiful standard that most people cannot live up to. I would explain that sexuality is not just sexual activity, and it certainly is not just heterosexual penetrative sex. Sexuality is intertwined in our whole personhood, it is an experience we have for a lifetime (or as sexologists often like to say, ‘sexuality is a womb to tomb experience’) and something that can be celebrated. To feel sexual urges and want to explore your body at a young or old age is typical. Sexual expression is a spectrum: we all ­do not express it the same…Another big lesson I would tell myself is that sexuality is a human right that everyone is worthy of and everyone can find someone to be interested in them. This may sound like a lie, I would have thought it was a lie, but it is really not.

--‘What I Would Tell My Teenage Self About Sexuality’, Crip Confessions

As parts one and two of this series attempted to highlight, the presumed asexuality of women with disabilities is the result of a combination of factors and influences. From the pervasiveness of beauty ideals propagated by the advertising industry to a hierarchy of needs that places sexuality and sexual needs far below access or health concerns, there is an overwhelming unspoken consensus that women with disabilities simply do not want sex. Or in the event that they do want it, they’re just too ugly to get it. The consequences of these harmful assumptions are widespread, and begin to take root at a very early age in the life of a girl living with disabilities – right from her classroom.

Sex education is a much-wrangled-over debate in the Indian subcontinent, in which women’s bodies serve as the political and religious battleground for an issue that is supposedly against Indian Culture. As those on the broader left including women’s movements, HIV prevention programmes and educationalists continue to fight for the right to sex education – and subsequently against a monolithic notion of culture manufactured by those on the right who claim to be its gatekeepers – small gains have indeed been made. However, with teachers unwilling to go beyond the basics of menstrual management and reproduction – and managements that most often penalise them if they do -- the levels and quality of sex-ed remain incredibly limited – or non-existent –in most educational institutions. And within this context of poor, badly managed programmes, there is one group of students that remains systematically excluded even from these meagre teachings – girls with disabilities. Based on the premise that they cannot – or should not – have children (there is still much to be done towards breaking the myth that ‘disability breeds disability’), that they are not sexually desirable, or that due to their impairment they cannot engage in ‘real’ sex, little has been done to include disabled girls within wider sex-ed programmes. Apart from preventing access to essential information on sexual health, hygiene and abuse, this exclusion sends a clear message to these young women right from the start of adolescence: you cannot experience life like other girls, and you will not grow up to be a ‘real’ woman.

These messages are institutionally reinforced throughout the life of a disabled woman. One major player in perpetuating these harmful myths is the healthcare system. Doctors, gynaecologists and nurses often operate under the assumption that a disabled woman is not sexually active – this leads to either misdiagnosis of conditions that could be linked to sex, or a closing of a potential space where women with disabilities could ask healthcare professionals questions related to their sexuality. Women are slowly coming forward with their experiences of being talked down to, having their aide or caregiver addressed rather than being directly spoken to, and feeling ashamed or embarrassed to ask questions about parts of their bodies that have been relegated as shameful.

Outside of institutional influences, however, there is still a deep discomfort around the idea of disabled people having sex, much of which comes down to what we ‘know’ to be the mechanics of sex. How does it work when your spinal cord injury means that there’s no sensation below your legs? What do you do when you can’t see your partner? How can a double amputee move their body in a way that could possibly please me? Sure, they can do ‘stuff’, but it’s not going to be ‘real’ sex, is it?

An anonymous interviewee in The Ultimate Guide to Sex and Disability (1) says, ‘In most movies they make sex look so clean and controlled, it makes me realise how much I’m not represented in what I see in the world.’ Our understanding of what sex is (and is not) is incredibly limited and limiting. Taught from an early age by families or sex educators that the sole purpose of sex is procreation (and everything outside that leads to AIDS, unwanted pregnancies or evil curses), penetrative sex is the singular lens through which a lot of sex (and definitely most sex in the Indian subcontinent) is viewed. This is then further combined with the sex we actually get to see: both mainstream films and pornography portray sex as happening between those with beautiful bodies, in a series of scripted heterosexual positions, and in incredibly clean way. And if anything is unclean or unstraight, it’s a fetish; a deviance. It is through these influential frameworks that our idea of ‘real’ sex is artificially constructed; however, artificial as it may be, it has very real consequences for those who cannot – or choose not to – participate in it.

‘So what is it exactly that you do?’ This ubiquitous question hasn’t only been aimed at people with disabilities. Homosexuality has been under the same interrogation for centuries. ‘What is this thing that you are? How can you do it that way and still call it sex? Sex is for us, not for you’ McRuer discusses the ways in which disability and homosexuality clearly share a pathologised past, where heterosexuality and able-bodiedness have both passed as universal frameworks for sex. Therefore, the bringing together of queer theory with a disability-rights discourse can be particularly useful in combating these ideas. Many queer women (and men, and trans people) have been fighting throughout the Global North to reshape and broaden discourses around sex to, very literally, include what they do. With the decriminalisation of homosexuality in India, these conversations are starting to take place at home too.  Therefore, a queering of the definition of sex – where things that were previously considered ‘deviant’ or ‘incorrect’ are legitimised -- can help shape an understanding of disabled sex that is inclusive and diverse.  Disability and queer rights activist Eli Clare calls for not a definition of ‘real’ sex, but for real conversations around the sex that disabled people and queer people are having every day, in every part of the world. She says, ‘I mean the steamy, complex, erotic, sometimes pleasurable, sometimes mundane, sometimes mystical, sometimes painful, sometimes confusing behaviour, activities, and fantasies we call sex.’ Developing broader, more encompassing conversations around and attitudes towards what sex can be – and what it is – is empowering for all of us who experience our sexualities, sexual lives, and sexual desires as unsanctioned by the textbook/pornographic definition and limits of Sex.

As the conversation around sex and disability begins to take root in more spaces, we can observe its slowly manifesting effects on policies and approaches within society. Disability rights organisations that had never previously approached the subject of sexuality are now beginning work in the area. In a first of its kind workshop, Mumbai-based Voice Vision conducted a day-long series of sessions on sexuality and intimacy for the visually impaired community. From using anatomical models to demonstrate condom use to talking about issues of sexual violence, this seminar was revolutionary for both the participants and the professionals leading the session. Visually impaired activist Nidhi Garima Goyal blogs about the experience of organising the workshop: ‘At the end of the day…the participants were not only armed with information, but felt comfortable speaking about sexuality and abuse…The speakers...maintained that questions were not less or more than any session they had conducted for the sighted community. The only difference was the requirement of giving [visually impaired people] a platform and space in which to gain such understanding in an accessible format, and to constantly reaffirm the fact that [they] are sexual beings who are entitled to their own pleasures – just like anyone else’.

Initiatives like these are few and far between. But they are the beginnings of a movement towards ending the devaluation of the sexual experiences, desires, and abuse of women with disabilities. Whether in the classroom, in a hospital, or in a conversation, girls and women with disabilities must be recognised as having the same sexual rights as all of us. Eli Clare declares, ‘It’s time for us to talk sex, be sex, wear sex, relish our sex, both the sex we do have and the sex we want to be having.’ And for the rest of us, it’s time to start listening.

(Richa Kaul Padte is a freelance writer and feminist activist living between Bombay and Goa. She was the co-author and project coordinator of www.sexualityanddisability.org, an online initiative by Point of View and CREA)

Infochange News & Features, October 2012

Endnotes

  1. ed. Kaufman, Silverberg, Odette, The Ultimate Guide to Sex and Disability: For all of us who live with disabilities, chronic pain and illness. San Francisco: Cleis Press Inc. 2003