There's nothing as unimaginative as popular culture when it comes to sex. If any group can break that stranglehold, it's the disability community.
Model Behaviour
It's difficult for some of us to stare back at an airbrushed image of physical perfection, say in Playboy or muscle magazines, and not start contemplating deeper issues of self-worth. We keep telling ourselves that the quality of our lives and our attractiveness should have nothing to do with flawless skin and bodily virtue-but they seem to anyway.
In the realm of disability, these issues are even more intensely felt. They go right to the heart of sexual self-esteem for those of us struggling to maintain visibility within a culture that imposes ruthless standards for attractiveness and desirability.
The mandate, or so it would seem for individuals with disabilities, requires a sort of physical legitimacy in order to obtain love and acceptance, with a certain sexual model as the gateway to both.
We are overwhelmed with television, magazine, and billboard ads using conventionally beautiful bodies to sell everything from jeans to taco chips. Sexual value has a certain cultural look that typically does not include people with disabilities.
When was the last time you saw an attractive woman in a wheelchair selling Slim-Fast, or a Paralympic athlete posing for a Gap ad?
As popular culture continues to promote-and blithely accept-images that connect sexuality to body perfection and beauty, the polarisation between those who have the ability to meet those standards and those who are unable to, will deepen.
In his 1998 book Nothing about Us Without Us: Disability Oppression and Empowerment, James Charlton outlines several reasons why this trend is likely to continue: "The implication of the present image of the disabled body...leads inevitably to the notion that people with disabilities are asexual."
Charlton claims that this is a compelling myth among non-disabled people due not only to the cultural fixation on body imagery but to the "medicalization" of disability as well.
Disability is frequently linked with illness and dependency, and this often has an oppressive effect upon those who are struggling for sexual equity.
There is so little, and at times inaccurate information available regarding the sexual potential of people with disabilities or the non-standard forms of sexuality that frequently come up in the community-this is yet another area in which people with disabilities have a lot to teach those without disabilities who define sexuality so narrowly.
"Just Say No" They Tell Us
Jamie, a young woman in her late twenties from Port Chester, New York, is an outpatient at a local rehabilitation canted due to paraplegia from a recent spinal cord injury.
"My orthopedist told me what to expect after my injury," she recalls. "He basically told me to concentrate on my upper body and ignore the 'wasted muscles' in my legs."
When Jamie asked her physical therapist whether or not she would be able to have a sex life again, she was informed that it would probably never be satisfying and that she would have to find someone very "special" to understand her "condition."
With comments like this from supposed experts, it's no wonder that individuals with disabilities often begin to confuse rigorously defined standards of acceptable body dimension, weight, and physical competence with the ability to be sexual. This becomes a discouraging and unrelenting process for those who don't measure up to the standard norms for physical acceptance.
Jamie confessed to feelings of shame and fear when confronted with the possibility of sexual intimacy due to negative stereotypes that she internalised regarding her body. "It feels like I am not entitled to have sexual feelings anymore," she admits. "Not only do I feel unattractive, but it almost seems like my body has lost the capability to respond to sexual cues."
The revised edition of the famous Kinsey Report, released in 1998, confirms this crucial link between body image and sexual self-esteem: "A positive body image is an important part of self-esteem, and having high self-esteem is vital to establishing intimacy with others.
It is the belief that one is valuable and deserving of loving relationships." The same report cited the importance of "being secure enough to risk having a lover find out that you are not completely perfect."
The salvageable message in this for a disabled population at odds with the misguided cultural connection of disability and sexlessness is in the notion of "security." "Intimacy has really less to do with sexual 'function' than many people assume," says disabled author Gary Karp.
He argues that the more intimate levels of sexuality are driven by deep emotions-that it is "sincere loving contact," which ultimately heightens security. Plus, he adds, "Stronger feelings make for better sex."
"Still Seriously Sexual"
Karp and other advocates agree that everyone has the potential to be a sensual being regardless of any physical disability, and it is up to that individual to either choose to resist or affirm certain popular conceptions that attempt to stigmatise disability as undesirable.
Consider Ellen Stohl, a quadriplegic, who posed on the cover of New Mobility magazine a few years back under the heading "Still Seriously Sexual." In that one cover shot, Stohl, her long legs clad in black fishnet stockings, straddled her wheelchair with a self-possessed posture that flies in the face of negative stereotypes linking sexuality and disability.
"I'm a woman; I happen to be using a wheelchair, but I'm a woman first and foremost," she told a television interviewer in 1987.
And what about men? Do they consider themselves men 'first and foremost' in the same way? "It depends," says Burt, a gay male who sustained a cervical spinal cord injury over 10 years ago.
"I now look at different aspects of sexuality—I'm not solely fixated on my ability to have an erection." He maintains that his sexuality entails more of an erotic exploration into massage, passionate kissing, and various forms of touch.
Although Burt still feels a great loss in not being able to achieve a "normal" orgasm, he says that his sexual partners have found his sexual energy and performance "as fulfilling as any other sexual encounter that they've experienced."
He attributes his sexual performance and ability to accept gratification to feelings of self-confidence and empowerment gained through his creative writing. "Even though it is compromised [sexual] enjoyment, there is still a way to fuel your passion and connect as a sexual and sensual human being."
He says he encounters his share of rejection; however, he points out that finding sexual partners is not as difficult as he once thought it would be. "There are so many people out there searching for a connection," he says. Disability or not, this is of course what it's all about.
Making a Connection: Step One
Concerns and feelings of frustration and anger about our sexuality are common with a disability. We may experience periods of loneliness and difficulty in trying to connect with a sexual/romantic partner.
The next article in this series will profile several people in the disability community who are addressing these issues. We will hear from them about how they have taken steps to fully embrace themselves in order to become more intimate with others.