For the past 37 years, I have routinely been asked, “Can you have sex?” I consider those who ask me that question rude. But more important, the question emphasizes my lowly social status as a paralyzed man. Despite 40 years of progressive legislation designed to empower people with disabilities, negative stereotypes persist. We are considered to be inferior, physically deviant, and asexual. That puzzles me, because I have witnessed the development of a substantial literature on sex and disability.
Last year I wrote an essay, “Head Nurses,” published in Atrium, a journal of the Medical Humanities and Bioethics Program of Northwestern University’s Feinberg School of Medicine.
The essay, and the issue in which it appeared — called “Bad Girls” — has been controversial and has led to a series of moves and countermoves by faculty and staff members at Northwestern, including the temporary removal of the issue from the medical school’s website, an action widely viewed as blatant censorship and a violation of academic freedom. Last week the issue’s guest editor, Alice Dreger, a scholar of medical humanities and bioethics, resigned her nontenured post at Northwestern over the medical school’s failure to defend this principle.
Academic freedom was the last thing on my mind when I spent more than a year, in the late 1970s, in a rehabilitation facility, having been paralyzed at the age of 18 by a rare neurological condition. In the essay, I wrote about the “bad girls” of rehabilitation: the “dick police” and “head nurses.” The “dick police” were young nurses who taught men how to catheterize themselves, a humiliating experience that I described in detail. “Head nurses” provided oral sex for motivated, hard-working young patients, if they wanted it.
I was lucky enough to have received a visit from a “head nurse” shortly before leaving rehabilitation. She and I were exceptionally close, about the same age, and she knew that, despite my repeated requests to the physicians who supervised my care, I had been given no information about sex. Would I be able to have it after my injury? Would I be able to father a child? When I had brought up the subject to my doctors, they appeared uncomfortable. They gave me no information and admitted that they didn’t really know what I could expect.
That was the dark ages of disability.
Before my essay was published, I worried that it might upset people with limited knowledge of the gritty reality that people with a disability routinely experience. I forged ahead, though, because, as I wrote, “my experience constitutes a lost part of medical history.” The sort of physical rehabilitation I experienced no longer exists. Indeed, when I talk with young men who have had relatively recent spinal-cord injuries, they are stunned that rehabilitation used to be so extensive — a year or more — and that life-long relationships were forged: among patients and between patients and the rehabilitation staff.
I am not suggesting that we return to physical rehabilitation circa 1978; medical science and technology have made significant advances, and I have directly benefited from them. Rather, I am one of many men and women who identify as pre-ADA cripples. We forcefully rejected the stigma associated with disability and pushed back hard against prejudice. We also gained much from legislative initiatives designed to empower us, which culminated in the passage of the Americans With Disabilities Act in 1990. We were the first generation with disabilities who assumed we would live a typical life. That life includes sex, having children, a college education, and employment.
I understood that my essay was provocative; I meant it to be. While I knew that the prime readership would be fellow scholars and physicians, I hoped that recently injured young men who were very likely asking the same questions I did in 1978 might come across it, too (along with my other work, including my blog, Bad Cripple).
I view “Head Nurses” as a legitimate scholarly essay. But I underestimated the persistent, powerful, and negative metaphors still associated with disability. I think what triggered Northwestern medical-school administrators’ attempt to suppress it was partly my refusal to set aside my sexuality. In so doing, I not only asserted my humanity but also undermined the myth that people with disabilities are asexual or unable to satisfy their sexual needs.
Shortly after Dreger and I went public about the magazine’s online censorship, the essay became widely discussed in the news, in articles of varying quality. The most absurd response was written by Rachelle Barina and Devan Stahl, who seemed to characterize my essay as pornographic. In a blog post on Bioethics.net, they said my article “perpetuates views of women, sexuality, and professionalism that best serve male power, rather than the power of women.” They argued that “the ‘bad girl’ theme of the Atrium issue allowed for an article that imported expectations of female subservience” and went so far as to speculate that I might have fabricated my experience, essentially characterizing me as a fantasizing misogynist. Treating my essay as pornographic or misogynistic reinforces the social isolation of people with disabilities and falsely affirms their inability to establish intimate relationships.
I am not naïve. I knew there was a possibility that my essay would cause controversy. But the controversy I imagined revolved around disability, sexuality, and the professionalism of health-care workers. Having spent most of my adolescence on various neurological wards, I am well aware that health care is a series of complex relationships among people with divergent backgrounds and expectations. That is why I think that sexual relations between patients and health-care professionals are inappropriate.
I wanted to write about a unique and little-known history. Medical technology was not revered as it is today, mostly because it was absent. In place of technology, and in the absence of a universally accepted approach to rehabilitation, health-care workers were wildly creative. The focus was on what a body could do at a given level of injury. Walking was dismissed, and new forms of navigating the world were embraced. No idea was off the table, if it could help someone function in the wider world.
Such creativity is largely absent today. With an average length of stay for in-patient rehabilitation about 55 days, people with spinal-cord injuries cannot possibly learn all they need to know about bowel and bladder control, skin care, and so on. Teaching those imperative, but mundane, life skills does not attract patients or generate revenue. Instead, rehabilitation centers market and brand themselves around various forms of expensive, cutting-edge technology or a focus on cure.
Those approaches perpetuate feel-good stories about people overcoming paralysis and learning how to walk, thus increasing even more the stigma associated with using a wheelchair. That is a social failure for newly paralyzed patients and their families. Thinking about what people with disabilities can do rather than what they can’t do requires imagination — which my “head nurses” had in abundance.
