At first glance—nothing.
I probably shouldn’t be telling you this, but as someone who talks about both sexuality and disability (separately and together) I sometimes, (okay, I won’t lie, frequently) feel like I’m having a professional identity crisis that’s never going to end. Grow up and devote yourself to disability and accessibility, I tell myself, or enjoy talking about sexuality and sexual pleasure. I don’t care which, but you have to pick one.
Disability is tangible; we can look around us and see the work that needs to be done—the policies that need to be changed and the barriers, any of them physical 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.
So, you see, I can’t separate the two. I can’t because sexual pleasure isn’t just about individual bodies’ enjoyment, and disability rights isn’t just about breaking down institutional barriers.
As a visibly disabled woman, am I not breaking down basic barriers of what is expected from disabled people, and what is deemed “appropriate” conversation, every time I publicly mention bodily autonomy or the nearly limitless potential we all have for experiencing pleasure?
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, leadership 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.
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 escape the conversation, 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 talk about it, 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 be devoid of 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 no happy medium?
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.” 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.
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 access it, 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 (though I’ve just recently learned 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 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 get snuffed out.
How’s disability good you ask? At the risk of sounding like I’m putting people on a pedestal, many people with disabilities have a self-awareness born of necessity 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. Having a disability can also result in people needing to do sex 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.