DSQ > Fall 2008, Volume 28, No.4
Abstract

This paper explores male and female perspectives on disability and sexuality. The topic of male disability and sexuality focuses mainly on men who have spinal cord injuries and use wheelchairs, and though important, this focus is due to the fact that not much information pertaining to men with other disabilities and their sexual experiences is available. The female section mostly concerns the abuse of women with disabilities, because they are seen as vulnerable by society. This paper is not a manual about sex for people with disabilities, but it discusses many of the fallacies that society has about people with disabilities and their sexualities.

Instructor's Statement

Professor Cynthia Lewiecki-Wilson
Miami University

Megan Albertz wrote the following essay for the first paper in DST 169, Disability and the American Imagination, at Miami University in 2007. While I created the course six years ago as a first-year Honors seminar, it now serves as one of the introductory level options for Miami's relatively new Disability Studies minor (approved in 2006-2007).

This introductory course usually attracts students who are new to disability inquiry, and so the first major assignment asks them to research a topic of interest related to disability. They are instructed to weave together various perspectives, while making sure to account for the perspectives of people with disabilities. The assignment asks students to consciously articulate a disability-centered perspective and set it in contrast with other perspectives.

I call this a "braided" essay because, as a writing teacher, I want students to be aware of, and textually mark, shifts in point of view and contentions over meaning. Braiding is not the same as synthesizing: we see the separate strands that come together in a braid to make a complex pattern. I want students to be aware that information and facts are constituted differently by different stakeholders, and that tensions exist among perspectives — for example, between the ways that medical personnel and disability activists consider the sexuality of the disabled (to use the example of Megan's topic). I typically assign several due dates for different stages of each writing project, and students have many chances to rethink and rearticulate their ideas.

Not so typically, Megan was a junior pre-med major when she took this course. As one of the first students to graduate from Miami with the new Disability Studies minor, she had already taken other disability studies courses and was completing her requirements for the minor. She was already knowledgeable about a disability-centered perspective, and so she dug into disability studies theory with gusto. What I like about her paper is that she puts her disability studies lens to use in examining a medical topic, an area of interest to her as a pre-med major. Megan is now beginning medical school and I'm hopeful that her undergraduate education in disability studies will transform her learning there and that she will contribute to the remaking of medical attitudes toward disability and treatment of people with disabilities.

Let's Talk About Sex…and Disability Baby!

Megan Albertz

For a long time, the silence concerning sexuality and disability spoke volumes. Sexuality in general is still a taboo topic, and the taboo is even greater for people with disabilities, because people with disabilities in our society are often viewed as non-sexual beings. There have been few answers to the questions by people with disabilities concerning sex, because people don't want to talk about it and there isn't enough information available, and because many do not consider people with disabilities as bodies with sexual desires. As one man points out on the Disability Now survey: "Disabled people are still largely considered to be asexual and the amount of misconceptions and ignorance on the subject is unreal" ("Disability"). If sexuality is discussed in terms of disability, it is usually concerning capacity, technique, and fertility, rather than touching, affection and emotions.

As a future physician who recently completed a disability studies minor, I hope to become a strong ally for the disability community. This is the beginning of my journey to gather information on disability as it relates to sexuality, so that I may provide as many answers as possible to future patients who have questions. Many doctors avoid and ignore questions that they are fielded; few are willing to speak openly about disability and sexuality. Perhaps doctors refuse to talk about the subject because they have no answers, but the way that doctors shy away from the subject does not help the needs of the disability community. When doctors do decide to discuss the issue, many talk about what people with disabilities cannot do as opposed to what they can do. The disability community, however, is speaking out more and more about sex and sexuality from their own experiences.

This paper explores male and female perspectives on disability and sexuality. The topic of male disability and sexuality will focus mainly on men who have spinal cord injuries and use wheelchairs, and though important, this focus is due to the fact that not much information pertaining to men with other disabilities and their sexual experiences is available. The female section mostly concerns the abuse of women with disabilities, because they are seen as vulnerable by society. This paper is not a manual about sex for people with disabilities, but it discusses many of the fallacies that society has about people with disabilities and their sexualities.

By mainstream society's standards, the most sexually active men are macho and strong, two notions that can be distant from men who have disabilities. Therefore, men with spinal cord injuries often spend much energy defending and proving their masculinity. The movie Murderball took up sexual myths about men with spinal cord disabilities. For one athlete with a spinal cord injury in the movie, it was such a big deal that he had gotten an erection after his accident that the nurse called in his mother and sister to take a look. In a way, this scene emphasizes that he is still masculine, but also it de-emphasizes him as a sexual person by having his mother and sister come in. But not all men focus on this facet of sexuality, as noted by a man on an Australian blog. This man identifies as gay and says his cervical spinal cord injury caused him to look at different aspects of sexuality rather than just focusing on his ability to obtain an erection. More than 10 years after his injury, his experiences have allowed him to explore his sexual experiences, which he says entail more of an erotic exploration into massage, passionate kissing, and various forms of touch (Tarricone).

In terms of relationships, many men experience rejection because their partners do not feel that men in wheelchairs can adequately perform and fulfill their sexual desires. John Hockenberry, a journalist and author of Moving Violations, talks about his encounter with a woman named Martha:

Our greatest adventure was in this reinvention of intimacy. But in the end, it only made her long for the original. She dreamed of a physical home I could never go to. I could see that she had these dreams. I could do nothing but hope they would go away. Our love was an island. Just as Robinson Crusoe's world of ingenuity and self-sufficiency had made him want to go home, Martha wanted from my body the one simple act of sexual union it could not give. She was Robin. I was her man Friday. But I dreamed of being her Batman. (195)

John and Martha agreed to see other people, and John still held the keys to Martha's place. After completing an interview with Walter Cronkite, he went to her home to surprise her, only to realize that she was not home, and he fell asleep on her bed. The next thing he knew, Martha came home with another man, and after some quick thinking, John decided that his only plan of action was to hide under Martha's bed. Unfortunately, Martha and the man came into her bedroom and made love while John was underneath. As the man went inside of Martha, John heard her make a noise that he describes as "[t]he big lotto jackpot, the real McCoy, the Amtrak Sunset Unlimited…This is the reason that I'm under the bed and he's on top of it" (Hockenberry 203). While sexual pleasure can be achieved in many different ways, Martha wanted the vaginal orgasm and John could not give it to her, so even though they had a connection on a personal level, Martha was prepared to move on to another man for the sexual connection.

There are some men and women with disabilities, however, who experience very different sexual lives than that which John Hockenberry describes in his memoir. There are people who see the wheelchair not as an obstacle to sex, but rather as a toy that only excites and heightens the experiences. This includes people who use these various assistive devices and incorporate them into their sexual activities. In this excerpt from a poem recited at the Disability Pride Parade, a woman describes how she and her husband make love:

…For fore play we use a reacher and a magnifying glass to arouse our senses.
Our checklist for sexual play consist of gel and a pump. (use your imagination)
When we feel real kinky we invite our Personal Assistant in our circle to assist us.

My Disabled Lover knows what I like and what I don't like
He knows I like my under-pad/ chucks spread on the bed horizontal NOT vertical
He knows I like my therapeutic pillow between my knees NOT my thighs
He knows I like my night bag hung on the side of the bed toward the foot NOT the head of the bed
When I come home from work feeling tight around the shoulders and legs, he does this freaky thing called
Range of Motion to loosen me up.

What a man! Ladies

Disabled Lovers are like One...
Two wheelchairs as One

(Heffner)

This woman and her husband have taken the time to explore what each person likes and doesn't like to have a sexual experience that is just as good if not better than what most women and men have. Though not all women with disabilities are fortunate to have sexual experiences like this woman.

Women with disabilities are often subject to double discrimination for being female and disabled, and some are not seen as people but as objects of abuse. As more and more women are speaking out about their disabilities and their sexualities, it is clear that many physically and cognitively disabled women are the subjects of abuse because they are seen as vulnerable and weak. Some women with cognitive disabilities do not quite understand the abuse that they are exposed to, but disability rights activist Simi Linton talks about her awareness of being taken advantage of in her book, My Body Politic. A hospital aide comes into her room to adjust her back brace, and in the process, touches her inappropriately (Linton). Sadly, this is not uncommon. Indian disability activist Kuhu Das notes that research shows that almost 90% of disabled women experience abuse and violence from caregivers or even close relatives (Nelson).

Other than caregivers and close relatives abusing women with disabilities, another issue is that many women feel that they have fewer chances of being in a relationship and opt to stay with a partner even if he/she is violent. Women with disabilities who do find partners often have the same sexual desire and sexual activity as women who are not disabled. In a testimony to the National Study of Women with Physical Disabilities, a 51-year-old married woman with multiple sclerosis and post-polio syndrome discussed: "I think my disability has affected my response to sex and this happens with a lot of MS people. I am not easily aroused. It takes a lot of patience and I'm very grateful that my husband has had a lot of patience. I do not probably respond as fast as most females do to sexual stimulation" ("Sexual"). Many of the other testimonials in this study suggest that a satisfying relationship sometimes takes a little ingenuity, but that makes things even more exciting.

In other cases, the sexualities of people with disabilities are forcibly prevented. "Ashley's Treatment" made headlines because it tells of a young girl with a disability who had her reproductive organs removed. The story is about Ashley, a 9-year-old girl, who has a brain injury of unknown origin, which has caused most of her mental and motor facilities not to develop. Ashley has no physical deformities and was expected to reach normal height and weight. Ashley's parents consulted with doctors and decided that the best way to improve her quality of life was to give her high-dose estrogen therapy to stunt her growth, conduct a hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and perform breast bud removal to avoid the development of possible large breasts ("Toward").

"Ashley's Treatment" caused a lot of conversation and controversy. The parents argued that they took these actions to improve Ashley's quality of life. They said that she will not be bearing children, so she would have no need for her uterus or the discomfort associated with a period, and she will not be breast-feeding those children, so she would not need her breasts, which, like all breasts, had the possibility of developing painful fibrocystic growth or breast cancer. However, the UK Disability Rights Commissioner had this to say in response: "This is unnecessary medical treatment, to deal with what is essentially a social problem: the poverty and lack of support faced by families with disabled children in both US and Britain" ("Ashley"). CNN did a news story about a young man, David, who has severe cerebral palsy and blogged about Ashley's story. In his blog he wrote:

Ashley's parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity....What strikes me about 'the Ashley treatment' and has brought me to tears is that the very people in all of society whom this child should trust have betrayed her. (Cohen)

David talks about Ashley's parents treating their daughter as less than human, as it is almost as if they cannot see their daughter, who happens to have a disability, as a sexual being, and as David argues, they can barely see her as a human being. In my mind, I wonder if they had had a boy, would they remove his penis? Would they give him hormones to stunt his growth? While I do not feel the blame lies entirely with the family, I do believe that this demonstrates how women are doubly discriminated for being disabled and for being female. I don't think they would have treated a boy in the same way that they treated Ashley, and take away part of what makes him a biological man. Her parents felt they were justified to put her in a passive position, and make the decision to remove many biological features that make Ashley a woman. Perhaps if more information on disability and sexuality were available to Ashley's parents, alternative decisions that were better for Ashley and for her quality of life could have been made.

Sexuality is not openly talked about, but the disability community is looking for answers to questions that they have concerning sexuality that have long been under wraps. The disability community's voice is growing stronger, and people are coming forth with their experiences. Today, there are more and more blogs and chatrooms for people with disabilities that openly talk about the best way to masturbate if you don't have complete and steady use of your hands, or how to deal with intimacy issues. The more information that is available, the more that other people with disabilities and without disabilities can learn to change normal society's misconceptions about sexuality and people with disabilities. As an ally to the disability community and as a future physician, I will help to spread the information on disability and sexuality to my patients and help to fight preconceived notions of disability and sexuality.

Works Cited

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Copyright (c) 2008 Megan Albertz, Cynthia Lewiecki-Wilson



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