Color & Control:

Special Focus: Sex, Love & Disability

The notion of people with disabilities as sexual has started to appear within the mainstream public consciousness more than ever before. For example, Hollywood is making films about people with disabilities accessing sex (e.g. The Sessions, 2012); professionals and practitioners who work with people with disabilities are making attempts to provide a more holistic approach, which includes sexuality and intimacy, within their practice; and sex and sexuality are now commonly found on the agendas of mainstream disability charities and organisations, like the Spina Bifida & Hydrocephalus Association of Ontario. Such changes have
occurred because of a growing awareness of the ways in which the typical sexual stereotypes of people with disabilities are at best untrue and at worst harmful. Such stereotypes routinely cast us as asexual (as lacking any sexual feeling and desire) or as sexually inadequate because our sexual practices and impaired bodies are unique and conflict with typical ideas about sex only as penetrative, spontaneous, and physical—which requires fully-functioning, independent, mobile, (not to mention, sexy, strong and supple) bodies. Confusingly, some of us are considered to have sexualities that we can’t control; sexual desires that are somehow ‘deviant’ and scare others. Where we are considered to have a sexual identity, it is usually only a heterosexual one, leaving lesbian, gay, bisexual, transgender and queer people with disabilities further excluded. Such stereotypes are rooted in multiple factors, but largely stem from how notions of our lives, bodies and identities as sexual unsettles wider stereotypes of people with disabilities as inert, vulnerable, incapacitated, and even childlike. Most of all, the sheer diversity of the sex and pleasure we experience challenges the common notion that people with disabilitiesaren‘t supposed to be having ordesiring sex at all.

As a sociologist (and a proud disabled woman with a congenital impairment), I was interested in how other people with disabilities experience sexuality, pleasure and intimacy. For example, how do people with disabilities experience or form a positive sexual identity in the face of sexual stereotypes? How do people with disabilities manage and negotiate their sexual and intimate lives? How do society and culture shape people with disabilities’ experiences of sexuality? Most importantly, how does this feel for people with disabilities?
After spending three years listening to people with disabilities tell their own sexual stories as part of my doctoral research at the University of Warwick, in the UK, I feel I have some answers to offer and would like to share some of my findings. I go further than this, however, to additionally explain some of the means and strategies through which some of the people with disabilities in my research not only ‘reclaimed’ a sexual identity, but managed impairment and disability as part of sexual life.

In my research, men and women with disabilities were very disempowered by common ideas of what society labels as successful sexual practice. For example, this is, firstly, as compulsory; but also as penetrative; spontaneous; mutually pleasurable at the same time (e.g. that partners orgasm together); inherently physical; and tied to conventional (heterosexual) gendered sexual roles. Importantly, the majority strived to meet such
sexual norms and regarded themselves to be a sexual failure if this wasn’t. Thus, many informants upheld these sexual norms as both ‘natural’ and ‘fixed’ (as most of us do) which impacted considerably on their experiences of sex and intimacy. Feeling the necessity to adhere to typical (heterosexual) gendered sexual roles was often central to this feeling of failure. Such roles restrict our sexual desires and practices to conventionally gendered expectations. For example, people who are heterosexual often follow typically ‘male’ and ‘female’ roles: that being ‘masculine’ involves sexual impulsiveness, an urgent sexual need, and sexual dominance, and that being ‘feminine’ equates only to embodying sexiness, being alluring and seductive and, ultimately, with a willingness to facilitate male sexual desire. These ‘sexual norms’ have deep-roots but—crucially—disability and impairment can offer a means through which to ‘shake these up’.

Take, for example, sexual pleasure. There are many ‘hard physical realities’ that can come with a body with impairment, regardless of whether impairment is congenital (from birth) or acquired. Participants in my research regularly spoke about pain, spasms, incontinence, scarring, a loss of or lessened sensation, immobility and weakness—the realities of their bodies which contradict our cultural assumptions of what constitutes a ‘sexy (or sexual) body’. However, my research showed that the impaired body can challenge society’s very narrow ideas about sex and sexuality, and can actually serve to expand them.

For example, people with spinal cord injury (who said that they no longer experienced orgasm in ways they had prior to injury) reported learning to explore their bodies in unique ways, to find new ways of experiencing sexual pleasure outside the typical idea of having an orgasm. Others explored and found new erogenous zones
through which they could orgasm, often that were nowhere near standard erogenous zones (e.g. the shoulder). Moreover, people with impairments that brought immobility, muscle weakness, fatigue and pain said that these bodily experiences had improved their sexual imagination; their knowledge of and creativity with sexual positions; and had encouraged them to explore different kinds of touch, play, and sensation. One woman who experienced extreme fatigue ensured she always had sex in the morning, the time of day when she had the most energy. Others rejected Hollywoodised notions of spontaneity and said that planned sex didn’t have to be any less sexy. One man said that his spasms enhanced his sexual pleasure, because his muscles would spontaneously release upon orgasm. Another couple shared that they had learned to de-centre the orgasm from their sexual activities because the considerable pressure of ‘achieving’ orgasm was detracting from their experiences. While this didn’t happen overnight (pardon the pun), and took considerable work, they successfully let go of the idea of the orgasm as necessary within sex, and ironically, said they experienced far more pleasure, sensual and erotic touch, and closeness as a result. Importantly, most of the strategies I speak of here, which truly challenge society’s ideas about what constitutes a ‘sexy body’, occurred not in spite of disability and impairment, but because of it.

Impairment could also offer the means through which to challenge typical ‘male’ and ‘female’ roles. While it’s important not to underestimate the extent to which many men felt inadequate that they couldn’t always take the typically ‘manly’ dominant role within sex, others said that this offered a chance to explore sexual activities which may be commonly understood as ‘feminine’ pleasures, such as focusing on the entire body,
foreplay, oral sex, and taking it slowly; coincidentally, which their intimate partners preferred.

Body image was also a key factor in how people felt about their sexual selves. Many informants
said they’d experienced significant bodily hatred. The idea of the ‘perfect body’ required of women, and more increasingly men, is oppressive to all of us, regardless of whether we have a disability or not. Tellingly, the majority of men had greater sexual and body confidence than women, precisely because of the heterosexist
ways in which women’s beauty, femininity, and body are often considered the most valuable thing about them.

Importantly, men told success stories of ‘coming to terms’ with body image, explaining their bodily acceptance as a journey and achievement; that working on changing their perception of their bodies enabled the reclamation of a positive body image and self-love. Notably, female participants seldom spoke of equivalent journeys through which they could become happy with their body image, but this isn’t to say it’s not possible. What this finding does show, I suggest, is the need for disability communities and organisations
to focus particular attention to women’s relationships with their bodies, to enable women with disabilities to learn to love, appreciate and be kind to their bodies.

Men and women also reiterated that communication and humour were important ingredients within
their sexual and intimate lives, particularly if they experienced ‘embarrassing’ bodily moments, for example, caused by incontinence. Sex and incontinence was not something participantsdiscussed readily, and very few
made reference to this factor, even though many had impairments which made them singly or doubly
incontinent. This shows how inhibiting experiencing incontinence can be—particularly as part of sexual life. Previous research has shown that incontinence has the ability to disrupt sexual confidence and enjoyment, and impact upon a person’s ability to view themselves as sexual. Many informants said that catheters were frustrating, and could be painful within sex. Interestingly, humour was identifiedas a key way to deal with
incontinence within sex, especially during those moments of accidentally urinating on partners. Other participants devised complex bodily management strategies that involved emptying the bladder and bowel fully prior to sex. Therefore, incontinence, although difficult, was by no means an insurmountable issue.

To sum up, many of the strategies I’ve touched upon within this article have highlighted how people with disabilities, particularly those with physical impairments, become skillful managers within their intimate and sexual lives of their bodies, intimate relationships, and pleasures. Recognizing and labeling this work is important. Firstly, it shows that people with disabilities can be proactive and dynamic within their sex lives, qualities which can be hard to learn through particular social institutions such as inadequate sex education, inhibiting care systems and unhelpful healthcare practitioners and services. More broadly, it challenges some of the negative perceptions of our lives and bodies and draws further attention to the problematic ways in which we talk about, think about, and desire sex and sexuality. Most importantly, however, is that recognizing and labelling this work provides fuller, more accurate descriptions of the many ways in which disability may be experienced within sexual and intimate life— straight from the experts themselves, people with disabilities.

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