Storying Disabled Women’s Sexual and Intimate lives
Illustration: Erin McPhee
In the dis/ableist cultures in which we live, disabled people’s(1) sexual selves are seldom acknowledged. We are, almost routinely, ascribed an asexual identity(2), where we are assumed to lack any sense of sexual feeling and desire. We are also deemed sexually inadequate because of the ways in which our distinctive sexual pleasures and practices, and Othered bodies and minds, contradict deep-seated sexual norms. Rather confusingly, some disabled people, typically those with the label of cognitive impairment, are considered to have sexualities that they can’t understand – a “hypersexuality” that they can’t control; and sexual desires that are somehow ‘deviant’ or dangerous to others. Further, where we are avowed a sexual identity, it is usually only within the realms of heterosexuality, leaving LGBTQQI2-S(3) disabled people further marginalized.
Within this, the sexual and intimate lives, selves and bodies of disabled women are further marked by patriarchy, sexism and misogyny (the hatred or dislike of women or girls). For clarity, I use the term patriarchy to refer the social hierarchy through which (cisgendered) males hold the greatest privileges in terms of social and sexual power. Intersecting with disability, patriarchy, sexism and misogyny mark disabled women’s lives in particular ways. For example, through our forced sterilization (taking away our ability to give birth); through our higher rates of sexual and intimate partner violence; through the broad denial of our sexual selves; through the chastising and punishing of our sexual desires within institutional spaces (like group homes) (particularly LGBTQQI2-S disabled people); through inhibiting our rights to love and be loved; through denying our rightful access to sexual support, information and education; through barriers within sexual and reproductive healthcare; and through the typical shaming of our sexual bodies, desires, and pleasures.
In this article, I write as both a disabled woman and a researcher. I discuss the sexual and intimate stories told by disabled women through my doctoral research which sought to explore the relationships between disability, sex, intimacy, and love. Crucially, I bring forward the voices of these women, applying their own words to embody the issues discussed. I do this not only because, politically, it’s important that my voice isn’t the only one (re)telling people’s stories, but because it offers the opportunity to identify, or relate to, the stories and words of others – regardless of disability status. Far from being “degendered” or stripped of gender, as disabled women often are in our culture, disabled women in my research told their stories first and foremost as women. While the women in my research identified as cis-women, I use the words ‘woman’ and ‘women’ in this article with a broad, inclusive and diverse understanding of “womanhood”; one which is inclusive of all cis, trans, and gender-queer women. While this is my personal anti-oppressive definition of woman and women, this study does not provide a trans-inclusive analysis of experiences with sex and disability, since participants identified as cis-gendered women. Therefore, my aim here is to (re)tell these intricate and intimate stories, drawing attention to the pleasures, fears, loves and uncertainties most prominent within disabled women’s stories about their own lives.
Secret Loves, Hidden Lives While the individual stories of both disabled men and women were marked in different ways by gender, race, class, nationality, age, religion, impairment type (e.g. sensory/physical) and the origins of impairment (whether acquired or congenital/from birth), disabled women’s collective sexual story was distinctly molded by heteronormativity, heterosexuality, and patriarchy. While heterosexuality is a sexual orientation, heteronormativity is the idea that heterosexuality – as a sexual preference, lifestyle, and societal institution – is the set norm from which all other sexual orientations and identities deviate. Noticeably, most women in the research tended to speak through a veil of (sexual) shame, embarrassed to articulate their pleasures and desires. It also wasn’t uncommon for whole chapters of women’s stories to be dedicated to their self-hatred and lack of body and sexual confidence, and there was an identifiable collective feeling of not embodying ableist and sexist ideals of womanhood “properly” or “appropriately” enough, for both themselves and their partners.
Sally(4): “Who would want to have sex with me when there are plenty of normal girls more than willing?”
Lucille: “I felt so bad about not wanting sex [after injury] that I kept telling him to have an affair”.
Jenny: [After a date] “His father came out to my car and told me to fuck off. He [boyfriend] didn’t have any disability… He said “fuck off you cripple and leave my son alone””.
This lack of confidence was further emphasised through women’s descriptions of their roles within their sexual and intimate relationships with others, and their own experiences of sexual pleasure and desire. While both men and women expressed great frustration at typically ableist (hetero)sexual norms – norms which dictate a fully-functioning, autonomous, mobile, “sexy”, strong and supple body for physical, penetrative, goal-orientated and genitally-focused activity – disabled men, for the most part, could negotiate a more empowering sexual role within their sexual lives and build a positive sexual identity.
For example, most men could often successfully negotiate dis/ableism(5), bodily impairment and constructions of masculinity (many of which are deeply oppressive for disabled men) to claim a gendered sexual self with which they were happy; one underpinned by body confidence and self-love, and through which they could experience sexual pleasure and desire without shame. Disabled men’s greater social and sexual power (afforded to them through patriarchy) also ensured greater practical sexual support from attendants, carers, and parents, which enabled better access to sex and sexuality than disabled women. In contrast, the majority of disabled women didn’t have the esteem or confidence to negotiate a desired role in sex; nor could they find a route to body confidence and self-love. Many women reported receiving little support within their sexual lives, saying that their desires were often overlooked by the people who provided their care. Most felt unfulfilled, inadequate and frustrated. All of these issues are compounded for LGBTQQI2-S disabled people (particularly disabled Trans people) whose identities often remain unrecognizable and Othered in the context of care and caring.
Rhona: “Although I knew that he adored me, I also always felt slightly as though I didn’t deserve him. I am a logical person, and I know that disability puts you further down the relationship league table.”
Jane: “I am unhappy [in the relationship] a lot. But I’m scared no one else would accept me. I just think people don’t accept people who are different.”
For some, a lack of self-love was compounded by experiences of violence. Disabled women experience higher rates of sexual violence than both disabled men and non-disabled (“able-bodied”) women (Canadian Women’s Foundation, 2011). These experiences of violence are heightened by the lack of privacy which is endemic to the disabled experience, but also by the fact that there is very little service provision for disabled women to report or escape sexual, physical and emotional violence. For disabled women of colour, aboriginal women, immigrant and refugee women and Trans women this can be further exacerbated by racism, ethnocentrism, xenophobia and transphobia. Therefore, a lack of violence support services which are accessible, culturally-appropriate and knowledgeable about LGBTQQI2-S issues adds to the problem.
Grace : “He wanted (and got) sex at least twice a day every day. Sometimes we had sex more than twice a day – even up to five times a day. It didn’t matter if I had my period or if I felt unwell or was pregnant. He wanted sex. If I refused, he made my life a misery, sulking and getting angry and taunting me. It was easier to do as he wanted. I seldom ever enjoyed it. And there was my deafness. I had left school with no qualifications, no career [her education was inaccessible]. A dead end job and an early marriage and children meant I had hardly any skills outside the home. He isolated me from my friends. He could not cope with me being deaf; as my deafness increased, he found it harder. He did not want a deaf wife. He hit me a few times.”
For other women, the difficulty in claiming positive sexual selfhood was further ground in the loud silences which surround the (sexual) lives of heterosexual and LGBTQQI2-S disabled women in mainstream culture. Representations of our sexual lives, selves and bodies seldom feature anywhere within popular culture. Where they do – for example, in films and on television – we are usually depicted as sexless, burdensome and pitiful. Interestingly, disabled people’s own (rights) movements have historically echoed this silence; it is only relatively recently that sex and sexuality – disabled people’s sexual politics – have been loudly and proudly placed on disability rights and justice agendas.
Gemma: “And, he [doctor] was just totally embarrassed. I thought ‘how bizarre’, he just didn’t want to tackle it at all. He was totally…aghast…didn’t comment and carried on [laughs]… I think having a couple of lesbians discussing their orgasms was not what he had in mind […] I just think that’s quite telling, really.”
Helen: “When I was younger I remember this one guy at school said “Can you have sex?” I was like “Yeah!”… Getting people to see past the chair… it’s difficult.”
Cripping Sex: What is a sexy body? While many seldom recognised it – or had the resources to claim it – the stories of some women explicitly showed the sheer and utter sexiness of difference and disability. Bodies which are both classified and labeled as impaired, “non-normative”, or different can truly challenge society’s prescriptive ideas of what constitutes a sexy body. These unique bodies can also radically crip(6) – or disrupt – sexual norms, opening up new possibilities and potentialities for pleasure. For example, some people spoke of experiencing many different types of pleasure outside of the quantified, measured, and charted key stages within the human sexual experience of arousal, climax and orgasm – aspects of sexuality which are aggressively positioned as necessary, even compulsory, within sex. I quickly realised that our cripped and queered bodies can subvert and expand sex in spaces where, for non-impaired (“able”) bodies, the scope for transformation may be limited.
Rhona: “Sex was brilliant, and we both enjoyed each other immensely: Intimacy, proximity, sensations, comedy, lack of control, feeling desired, being treated roughly and not as though I might break. It is also one of the few examples of when my body allows me a ‘time-out’, and I feel liberated. Done right, it is all pleasure and no pain.”
To go a little further, it is our beautifully complex bodies and minds which offer a glimmer of how conventional bodily pleasures, only ever physical and bodily, can be cripped and queered, in order to expand “sex” to include our minds, senses, imagination and spirituality. For example, the imagination was a central form of eroticism for many of those who took part in the research. Many women said that their imagined erotic experiences were the times when they felt the sexiest and most turned on. Others, who had displaced erogenous zones (which can result from spinal injury), could orgasm through stroking arms or feet. For example, one disabled man who had found it difficult to orgasm in the conventional way discovered that he could orgasm through his partner stroking his shoulders. This inevitably led to many nights of shoulder stroking… and shows how disabled bodies can expand and envelope pleasure in new, exciting ways.
Hannah: “So that was an eye opener, that wow, an orgasm through touching above the injury… it’s amazing really…”
Others de-centred the orgasm or traditional gendered roles within their intimate practices all together, usually on the grounds that these rigid sexual norms just didn’t fit their embodiment (their experiences of their bodies). One couple decentered the orgasm because, they said, relentlessly ‘chasing’ it was becoming overwhelming. As such, they found that their closeness, intimacy and affection grew immeasurably once they had learned how to have a great sex life together without orgasm. Others explored how the spasticity of muscles (which can occur within any number of conditions, such as Cerebral Palsy and Spina Bifida) could enhance and their orgasms and enrich their experiences of pleasure.
Lucille: “I can’t feel any sensation that one would normally have but the way I feel does change in a way I can’t describe. Teamed with my imagination it can be very pleasant, makes me feel sexy.”
Others got great pleasure from being treated roughly, as a departure from the ways in which their bodies were (routinely) treated as though they were inherently breakable or fragile. Further, while many found that disability could mean a lack of spontaneity in sex (spontaneity, I add, which is depicted in every Hollywood sex scene ‘cos, apparently, sex needs zero discussion), they also said that planning made sex more enjoyable, and that it enabled the development of more elaborate and imaginative sex play.
For some, the presence of disability and bodily difference were a means to reject what disability scholar Tom Shakespeare (2000: 164) calls the ‘Cosmo conspiracy of great sex’. This is the (false) idea that all people are having incredible sex, all of the time – which just isn’t true. The sexual stories collected in my research showed that enjoyable sex isn’t natural, but takes work: open discussion with partners; understanding a partner’s likes and dislikes; lots of experimentation with sex and pleasure; and lots of work on the intimacy which can precede sex. While disability was the impetus for many of these intimate labours, these alternative sexual ways of being suggest that there is much to learn from disability when it comes to sex and intimacy.
To sum up a little, these experiences emphasize how crucial it is for disabled women – and all women and girls – to reclaim ‘sexy’ from the deeply oppressive ways in which it is proliferated and maintained in our cultures: a mode of sexuality that is considered “natural” but is, in reality, anything but, being routinely learned and relearned; taught, policed, and regulated throughout our lives.
Conclusions… I finish by asking, then, how can all of us strive to become shameless in our sexual lives? How can we rid ourselves of the shame that is often endemic to our experiences, lives and bodies, regardless of whether we – as women – live with disability, or not? The storied lives of disabled women in my research have shown this can only happen by sharing our stories, lives and experiences. Stories can – if voiced and heard – be productive, useful, and valuable. Stories can define a place and people. They offer a sense of collective experience; a means to claim space, foster a positive identities and experiences, and demand social and sexual justice. Collectively, telling and sharing our stories is how we can build sexual cultures and communities as we want them; ones which fit all of our bodies, pleasures and desires; ones which empower rather than oppress. So, what’s your sexual story?
Kirsty Liddiard PhD. is currently the Ethel Louise Armstrong Postdoctoral Fellow within the School of Disability Studies, Ryerson University, where she lectures and teaches on a range of disability issues. Kirsty considers herself a proud disabled woman and activist, critical disability theorist, and feminist. You can read her at email@example.com.
- This article uses the terms ‘disabled people’ and ‘disabled person’ rather than ‘people first’ terminology (‘people with disabilities’ or ‘person with a disability’). This reflects the position that disability, while part of identity, is not intrinsically embodied within the person, and is not individual or medical. Instead, disability is the sum of systemic, attitudinal, environmental, political, economic and cultural barriers within society.
- The asexual identity ascribed to disabled people is situated outside of the proud asexual identity chosen by the asexual community.
- LGBTQQI2-S: Lesbian, Gay, Bisexual, Transgender, Questioning, Queer, Intersex and 2-Spirit (LGBTQQI2-S) communities.
- All names have been changed.
- The term “dis/ableism” refers to the dual processes of disablism and ableism. Disablism is a form of direct discrimination or prejudice on the grounds of disability; ableism is a broader network of cultural beliefs whereby the non-disabled/”able” body and mind are the norm against which the value of all other bodies and minds are determined.
- The term crip has been reclaimed by many disabled people from the derogatory term “cripple”. Through Crip theory and Crip politics, the meaning of crip has become synonymous with resistance, pride, and non-normativity as a means of strength. I use crip as a verb, to refer to the process by which disability can fundamentally undermine the oppressive ideology of the norm, as well as to expose how “able-bodiedness” is naturalized (considered natural) and established.
• Canadian Women’s Foundation (2011) The Facts About Violence Against Women. Online. [Accessed 09.11.2013]. Available online here.
• Shakespeare, T. (2000) ‘Disabled Sexuality: Toward Rights and Recognition’, Sexuality and Disability, 18: 3, 159-166