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• Sex, disability and access: interview with Eli Claire

Recently, “Doin’ It Well” got the opportunity to sit down with Eli Clare to talk about his work. Eli identifies as a white, disabled, gender-queer writer and activist with a strong rabble-rousing streak, and he was on campus to give trainings on the treatment of and access for people with disabilities, LGBTQ people and other socially marginalized groups. With so much to discuss for such a brief column, we began a conversation about sexuality and disability.

Having a Sexuality

According to Eli, the fundamental truth of sex and disability is that disabled people (except possibly the amputee/devotee community, which we will address in a later column) are not viewed as sexual. This is about socially constructed barriers, what he called ableism. Ableism places disabled people as having “abnormal” bodies rather than showing people with disabilities as full human beings with their own worth. He said, “One of the themes in terms of ableism and disability is that disabled people’s bodies are seen as broken and need [to be] fixed.” In his mind, this ableism and framing of disabled people as asexual happens through both attitudinal and material barriers.

Attitudes Are the Real Disability

Eli told us, “Interview some disabled people, and ask them about their dating lives. [They will say], ‘I go places, and no one’s even looking at me, much less flirting with me, much less asking me out to coffee or a beer or much less asking me to stay the night.’” Although this may be truer for folks with apparent physical disabilities, even people with “hidden” disabilities, such as Chronic Fatigue Immune Deficiency Syndrome, may receive this treatment once they disclose their condition. Suddenly, their potential partner may make judgments that this person would not be able to “keep up.” These attitudes follow disabled people every day, making them invisible, yet gawked at and always assumed to be asexual.

Material World

At the same time, there are also vast material barriers for disabled people to grow as sexual beings. Eli brought up spinal cord injury patients who wake up in the hospital after an accident and their first question is “What about sex?” Eli asked, “So where do you learn about sex in your newly configured body?” The answer for many people with disabilities is nowhere. Information about their bodies and their sexuality is not provided, and these questions may even be shunned.

Eli brought up people living in nursing homes or using home health care, such as a personal assistant (PA), for their daily tasks. As Eli said, “Try having a healthy, autonomous, freely chosen sex life in a nursing home. Not gonna happen.” Because of the complex relationship between disabled people and their PAs — who often bring sex-negative attitudes with them — individuals who may need a PA to help them to participate in solo or partner sex, to plug in a vibrator or to position them may not ask or may be afraid to ask for the assistance they need. Eli said this is especially true for LGBTQ disabled people, who may fear a homophobic response.

Public Image, Private Lives

With the lack of positive images and stories of disabled people, there clearly needs to be a diverse set of representations of people with disabilities, especially regarding sexuality. Yet Eli cautioned us against assuming that sexual images about your community are always good. “There are other [dominant cultural] images for other communities of people, but many of those images are degrading in one way or another and ... they don’t convey a sense of depth and breadth that comes from within individual people and cultures.”

He spoke about the importance of erotica and porn in marginalized communities, even when made by people outside of the community. As Eli said, “There’s so much power in being able to see yourself reflected on a screen, to have a body that looks somewhat like yours up on a screen, however stylized or unrealistic that image might be.”

Rather than shutting down particular images, Eli calls for a wider array of images. He said, “The projection of erotic images — whether they be visual or auditory or written — are a way for communities to create compelling sexuality rather than have some version of sexuality, or lack thereof, foisted upon [them].” Because there is such limited representation, one image is seen as defining a community rather than being just one image among many. As Eli said, “How can we create that plenty so any one image doesn’t have to bear the brunt of representation or education?”

By the interview’s end, Eli had given us a lot to think about sexuality and disability, about sex and representation. Most importantly, he reiterated, “What I want to make sure that you’re aware of is that we’re talking about multiple barriers that have nothing to do with what an individual body’s sexual capacity is.” By recognizing the barriers put in place by society, we can begin to see where the real disability lies.