Talking about sexuality and disability is a big deal. Until recently, most of what we saw in mainstream media were reports of disabled people being abused and assaulted, or syrupy-sweet feel-good stories about a person with a disability in a romantic relationship which (gasp!) included sex.
Sex, and disability, as experiences, are assumed to be entirely different – with the thinking that one involves only pain; the other, involves only pleasure.
As social concerns and lived experiences, disability and sexuality don’t seem, at first glance, to have much in common either.
Disability is tangible – in our faces; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers that need to be broken down. Sexuality – just is – except that it’s not. Sexuality is an individual concern—except that it’s not. Sexuality is filled with pain, confusion, lack of access and education, and endless potential just as surely as disability is filled with struggle, misunderstanding, lack of access, and sheer humanity.
We can’t continue to ignore connections between the experience of disability and the experience of sexuality. we can’t do this because sexual pleasure isn’t just about individual bodies’ enjoyment (people’s sexualities are so much bigger than the physical and emotional experience of sex), and disability rights isn’t just about breaking down barriers and gaining legal equality (it’s about individual lives and collective experiences).
In talking about sexual pleasure, we (or at least I) make a pretty natural leap to questions of sexual health, relationships, intimacy, safety and recovery from sexualized violence, and access to help with all of these. In talking about disability and access we need to include access and inclusion in recreation and social opportunities, as well as employment, education, and living conditions. To break that down, we who are disabled need to be able to access fun things—including fun sexy things. Not considering social opportunities as important means, ultimately, not considering disabled people as full and complete humans beings.
Continuing down this road of thought, I begin to realize how similar sexualities and disabilities, as topics of conversation, are to one another.
Consider how mention of both sex, and disability, in casual conversation generally make people feel—scared, nervous, eager to change the subject, full of questions they don’t feel like they’re supposed to ask or don’t know who to ask.
Consider the struggle people talking about sex or disability often have with language. Which terms do we use? Will we offend someone if we use this term over that one? What do all those terms mean anyway?
Consider the way we talk about both sex and disability– in hushed voices, in euphemisms, in quick side conversations.
As for talking about people with disabilities who have sex, or how sex is affected by disability? —Well, we really just don’t talk about that.
When we do, we (at least according to mainstream media) frame an intimate relationship involving a disabled person as miraculous or inspirational, or we expect the lives of disabled people to not include any sexual experience or desire.
Come to think of it: Isn’t this how we represent sex in our culture too—as something out-there and in our faces, or something we need to repress or hide at all costs, with nothing in between.
Whenever we do acknowledge sexualities, whether the actors or objects of those sexualities are visibly disabled or not, the representations rarely convey pleasure. Sexual pleasure is something we, as a culture, haven’t paid attention to, and in that silence is the assumption that pleasure will just “happen” by itself. The reality is that it often doesn’t happen because of, among other things, lack of education and fear many have around their own bodies. If you’ve learned that exploring your own body is a bad thing, or you don’t have the words to tell your sexual partner what you like, or don’t have access to sexual healthcare to help with pain or illness that interferes with your sex life, pleasure could be hard to come by.
Interestingly, meeting the access and inclusion needs of disabled people is also something that’s just thought to “happen.” Someone else will take care of it. Surely, one step into a building isn’t a big deal? It’s okay if that Web site isn’t accessible; someone can help you sign that form or do your shopping, right?
These kinds of assumptions limit people—real live people, not theories.
Sex and disability both get talked about as if they’re medical issues, only to be addressed by highly educated experts. There’s this strange thing many of us who talk about sex professionally encounter, which is the question of what medical or therapeutic credentials we have. Most medical professionals receive little to no training in the areas of sexuality and relationships; seventy-five percent of American medical students surveyed reported receiving less than 5 hours of formal training in sex and sexuality. Most medical and therapeutic professionals, including psychotherapists, only get anything greater than basic training (which I’d still argue is what is needed to cover all of the basics) if they actively seek it out.
People with disabilities often find that medical and therapeutic folks are assumed to be the ones who have the most knowledge about our bodies and minds; they’re the ones who tell us what we are and aren’t able to do (how does this jive with the finding that more than half of American medical school Deans report that their students aren’t adequately trained in disability or in working with disabled people?) Whether it’s through unsolicited assistance from a stranger on the street, or an officious pronouncement from a medical professional, disabled people are often not seen as being in charge of our own lives, and as the best experts on those lives.
Many people don’t get the education they need to make sound choices about negotiating sexual relationships and taking care of their sexual selves. Many disabled people don’t get the tools (often practical tools like technology, mobility aids, and accessible housing or workplaces) to live life fully and safely.
What I think we end up with, with both sexuality and disability, are realities that affect both individuals and communities. Not talking about these realities turn everyday experiences of sexuality, disability, or both, into the problems – sexual assault, unwanted pregnancy, sexually transmitted infections, abuse and neglect of disabled people, severe isolation among people with disabilities, to name a few – they’re already assumed to be.
What do we do? We talk, and talk, and talk some more.
We treat everyone like human beings. We avoid running in fear from mention of sexuality and from disabled people. We avoid shame around sexualities and belittling (which often looks like shaming) of disabled people
We look at the cool things talking about sexuality and disability do for our understanding of both.
Disability impacts sex, sex impacts disability, and the reality that people with disabilities can and do have a sexuality and have sex (and enjoy it) tends to be forgotten.
How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have an awareness of themselves and what we need and want that other folks just don’t have, or, and please forgive me for circular logic, self-awareness other folks just aren’t aware they have. Apply that to sex, and to life in general, and some pretty amazing things can happen – like more sexual pleasure, fewer unhappy relationships, more confident people (sexually and in general).
Having a disability can also result in people needing to do sex and express their sexualities differently, hence breaking the mold of the popular idea of how sex “should” be done—something that can only make life freer, and more fun, for everyone.