I will begin this with a disclaimer: my research does not focus on sex. It’s simply not my area and, for whatever reason, the subject hasn’t pulled me in as a scholar. That said, sex and sexuality have been recurring themes in my dissertation fieldwork. People want to discuss them. Parents, families, educators, psychologists, physicians, policy folks. As with any population, sex talk in the context of disability brings up anxieties, curiosities, and questions; it sparks discussion of risk (real or imagined), agency (ditto), gender, health, and the unknown. While none of this is unique to a particular group, the lack of space for conversations surrounding sex and disability as a whole gives pause.
I should note that my research and personal experience focus on children and adults with significant multiple disabilities, as well as on the experiences of their caregivers, so my thoughts below might speak more to these realities. However, my preliminary ruminations speak to broader silences and erasures in the contemporary U.S. I will return to this topic in a future post. To start, let’s unpack the varying logics behind the de-sexualization of people with disabilities.
Infantilization: Adults with disabilities are not children, yet public understandings continue to infantilize this population. Children don’t have sex, so neither should adults who are socially equated as children. An easy fallacy to identify and one connecting closely to ideas of and continued struggles for independence, self-determination, and individual agency.
Risk, Part I – Fantasy: This, too, is a recurring theme in my work. I know one parent who is convinced that virtually all people with disabilities will be victims of sexual abuse or assault. I know of another who opposed community living programs for fear of well-known kidnapping and sexual exploitation scams. The theme of a highly sexualized risk looms large, but why? How real is this? And what about the realm of the unknown and unknowable? I attended a training earlier this year by Canadian disability rights and caregiving guru Ted Kuntz, who was adamant that our communities are much safer than we tend to think. I could feel the visceral pushback from the hundreds of attendees (mostly parents) as he riffed on this theme. The world is not as dangerous as we think, at least not in the ways that we assume. There are not sexual bogeymen lurking in every shadow. But…
Risk, Part II – Reality: But we cannot acknowledge the role of risk without coming to terms with the actual prevalence of sexual abuse and assault among all people in the U.S. today. Women, men, gay, straight, typical folks, people with disabilities, everyone. A former professor once said, “If you want to find out about what a person thinks about a sensitive topic like sex or reproduction, don’t ask for their personal opinion. As what their friends and neighbors think.” How might an insistence of sexual vulnerability among people with disabilities obscure the unspoken vulnerability of us all, particularly women? There’s a curious tension between the widespread fixation on sexual danger faced by people with disabilities and the all too pervasive social erasure of similar risks in the typical population. (Consider, for instance, the current scandal regarding Department of Education investigations of U.S. schools’ handling of sexual assault allegations and possible Title IX violations.) Fixating on sexual violence among a particular subgroup has the paradoxical effect of isolating both that group and the overall risk. Sexual violence becomes curiously “Othered.” But we all know that it is not.
Gender: Early in my graduate school career, I attended a disability panel at a major conference. It was a diverse group of papers and, although they weren’t all great, I felt that I learned a great deal and I waited anxiously for a fruitful Q&A session at the end. Then, the ball dropped. The discussant, a highly respected professor who shall remain nameless, offered his remarks on the collection of papers. He gave a few comments and incorporated several barbed remarks before turning his attention to the issue of caregiving, sexuality, and disability. He said something to the effect of: “Where are the bodies in these papers? As a group, you fail to address the role of actual, physical bodies with respect to caregiving.” I disagreed, but acknowledged his point as an issue in much of the existing literature. He continued: “For instance, think about the differences in the physical realities of caring for a son versus a daughter with disabilities as they enter adolescence. With the girls, you have to worry about protecting them. With the boys, you have to teach them – somehow – to control their sexual urges. And erections!” And the whole damn room nodded along with him.
Now, I’m paraphrasing to the max here, but that’s basically what this guy said. I couldn’t make this up. It was one of the most old-school, biologically deterministic claims regarding gender that I had heard in years, and I could not believe that no one took him to task. Using his cache as a senior scholar and panel discussant as support, he reified the notion that sex for men is about pleasure and power, but for women it is centers on restraint and risk. There was zero acknowledgment that a teenage girl with disabilities (of whatever type) might experience sexual feelings, urges, or curiosities. Rather, we were left with two images of adolescence and disability: the untamed teenage boy with wild erections versus the perpetual female victim. I was horrified.
Eugenics: The history of eugenics looms large in the contemporary silence surrounding disability and sex. As an anthropologist, it is fascinating to think about what bodies and minds are deemed fit for reproduction. I spoke recently to the father of a young adult on the autism spectrum. He asked me if his son would be able to marry and have a family. I joked that I knew plenty of neurotypical couples with children who shouldn’t have reproduced, so I didn’t see why not.
It’s a dark history, though, connecting to decades of forced sterilizations, institutionalization, and segregation. Indeed, I believe strongly that the legacy of eugenics practices and thinking in the U.S. is fundamental to contemporary disability realities and, in turn, confronting this past is necessary for understanding possible solutions.
We, The Modern Victorians: Finally, it is necessary to acknowledge the ongoing tension between sex for pleasure versus sex for reproduction. It truly blows my mind that we must continue this discussion in the contemporary U.S., but so be it. Abstinence-only education, the recent Hobby Lobby SCOTUS ruling, and the strange restrictions on women’s access to contraception are only a few examples. Should everyone who has sex do so for reproductive reasons every single time? I will keep my opinion to myself, but you can probably guess it. Okay, no, I can’t do that.
There is nothing wrong with sexual pleasure shared by consenting adults. (And once we introduce marriage to the conversation, all bets are off.) But isn’t consent a slippery slope, you might ask? No more so in the domain of sex than in other areas. For more on this topic, I would suggest reading Rachel Simon’s Riding the Bus with My Sister for an unflinching and honest look at how these intimate issues unfolded for Simon’s sister, an adult with intellectual disabilities.
These are just my views, yet I will argue vehemently that denying any discussion of sex and sexuality for any population introduces a heightened element of risk. Foreclosing the social space for sexuality among people with disabilities (or other group) serves only to render this population unnecessarily vulnerable. Silence almost never protects, particularly when it comes at the cost of knowledge. We have got to initiate these conversations, and the “we” in questions must reflect the diversity of disability lives and worlds. As a sibling, scholar, and ally, I am eager to be part of this critical discussion.