Facilitated Sex: The Next Frontier in Sexuality and Disability?

| November 12, 2012 | 1 Comment
Screen Shot Sex Files Video

Screen Shot Sex Files

By Mitchell Tepper, PhD, MPH
Gerrad and Laurie (not real names but real people) developed an online relationship over a two-year period. Casual turned intimate, and intimate hot. After 24 months of mounting passion, they decided it was time to cross the digital divide and meet flesh-to-flesh. Their plan was to consummate their relationship in person.

After great anticipation, their dream of being together in the biblical sense was thwarted by the realities of their disabilities. Gerrad has a neuromuscular disease resulting in overall physical weakness. Laurie has quadriplegia. While she had enough biceps strength to help Gerrad get on top–the only position he can thrust from–they weren’t able to position their body parts for intercourse.

Gerrad and Laurie came to me for advice. They were both aware that good sex and strong intimacy can happen in the absence of vaginal intercourse, and had explored other options for sexual expression. Recognizing that simple touch and closeness satisfies many people, they were still intent on having intercourse. After brainstorming about different positions and assistive devices, we talked about asking a personal care assistant (PCA) to help.

Gerrad was open to the idea. For several reasons, Laurie wasn’t quite as comfortable. She didn’t want a third person–likely one of her female PCAs–present during these most intimate moments, and broaching the subject seemed risky. She not only feared that her PCA might refuse, but that a positive reply would make their day-to-day working relationship awkward. And there were underlying issues surrounding her disability. She questioned why Gerrad would want to go through all this trouble when, in her eyes, it would be easier for him to have a sexual relationship with a nondisabled woman, and she worried that Gerrad might like the sensation of her PCA’s physical assistance as she positioned him.

For Gerrad and Laurie, and for most people with disabilities, this is uncharted territory. On the surface, one might jump to the conclusion that their difference in comfort levels is gender-related. Isn’t it every heterosexual man’s fantasy to be with two women, and wouldn’t any disabled woman feel jealous or threatened by the presence of an attractive nondisabled woman? One might also conclude that this has something to do with their age of onset of disability. Gerrad’s disability arrived before he was an adult, and he has relied on assistance for many years. Laurie’s came later in life, and she might not be as comfortable accepting help.
But the truth is that we don’t know if these or any other speculations have validity because there is little published research exploring the use of PCAs to help with sexual expression.

Three’s a Crowd
One day, Laurie gathered up the nerve to ask one of her PCAs if she would put a condom on Gerrad. The PCA felt the request was plain and brave, although at first she thought Laurie was joking. The PCA decided that it was just part of being mature, and she agreed to assist. Then help with the condom progressed to help positioning Gerrad for intercourse. This PCA completely understood their situation and was very willing to help.

In practice, the situation became too clinical for Gerrad. Accurately or not, he sensed awkwardness on Laurie’s part; he says he saw it in her eyes and felt the tension in her body. Concerned about her well-being, he was unable to maintain his erection. But once they were positioned, they asked the PCA to leave the room. When they called her back for help, Gerrad says he felt the tension rise again.

Laurie feels that their sexual relationship was good while they were alone, but uncomfortable the second her PCA entered the room. It wasn’t so much awkward, she says, but as if sex had become a job. She also says she would prefer help from someone who is more experienced.

“I can’t lift my head to see what needs to be moved where,” Laurie says. “Gerrad can’t either. I need someone who can take charge.”

If I were a therapist and not just an educator, I might guess that Gerrad and Laurie, to some extent, projected their individual discomfort onto the situation. Yet Gerrad felt that another occasion, with a different attendant, was even more clinical as the PCA put on rubber gloves and reminded them both that this wasn’t part of her job. She had reluctantly agreed to help because it was important to Laurie. Gerrad says he couldn’t ignore the fact that were three people in the room trying to accomplish what is usually done by two.

Informal Research
Determined to learn if using a PCA to facilitate sex is a common occurrence, as believed by a small core of sex and disability advocates, I did some informal research of my own. I put a call out to half a dozen listservs asking for the experience of other people with disabilities who had tried facilitated sex.

One young woman with cerebral palsy wrote with some humor that she and her boyfriend with muscular dystrophy discussed asking a PCA for help but broke up instead of following through. She was evidently comfortable with the idea, but he was not. She acknowledged that facilitated sex is a complex issue, but also that if she were in love with someone, she would ask for help. Sadly, no one else volunteered their experience.

I also reached out to Ray Aguilera, personal assistance services coordinator at the Berkeley Center for Independent living. I thought if sex facilitated by PCAs was going on anywhere, it would be happening in the Bay Area, where there is unusual openness about sexuality. But if it is happening there, it’s primarily undercover, no pun intended.

Although Aguilera says that CIL Berkeley doesn’t formally address sexuality issues, he has been able to use his previous experience in sexual health education to provide information informally to members of his community.
“I’ve had four or five men approach me about how to ask for this kind of assistance,” Aguilera says. “Oftentimes their PCAs are female, so the men are afraid the PCA may feel threatened or sexually harassed if they were to approach them. It’s really a double-edged sword for people. They don’t want their request to be rejected by the PCA because they want or need sex; at the same time, they may be terrified of a positive response because of how that could affect their relationship with the PCA.”

Aguilera says his female consumers have never broached the topic with him, but suspects that probably has more to do with his being a man than that women feel more discomfort addressing the issue.
I asked Aguilera if the topic of facilitated sex was ever included in the interviewing and hiring of PCAs. Evidently not. The disabled people he knows who have negotiated this kind of assistance usually discuss it after establishing a good working relationship with the PCA.

“I generally encourage people to be upfront about their needs,” says Aguilera, “but many of my consumers are still afraid to ask for assistance with partnered sex or masturbation.” While he thinks that help with masturbation may be more common than with partnered sex, he, like me, is relying on intuition.

In general, facilitated sex and details of personal sexual activities are seen as private matters. While most of the responses to my informal survey were supportive of exploring this subject, one respondent said that in her opinion, when two people need assistance with intimacy it’s no longer intimacy. She said she would choose celibacy instead, and assured me that “No lady would dare share.” She asked why I couldn’t just research rats instead of concerning myself with people’s private lives.

I acknowledged that not having sex is a valid choice, and that I have the utmost respect for the hundreds of women and men who have shared the most intimate details of their sexual lives with me. As for rats, they’re a little weak at shedding light on the social and emotional aspects of sexuality.

More to the Story
There is more to the story of PCAs facilitating sex then just lending a hand. The potential for complicating what is usually simple is great.
Russell Shuttleworth is a medical anthropologist studying how men with cerebral palsy negotiate sexual relationships, and was a PCA for 16 years. He says most of the men in his research who have been successful in sexual relationships insist that it’s essential to risk rejection.

But when does assertiveness in asking for sexual assistance cross the line to sexual harassment? When is taking a risk seen by a PCA as an unwelcome proposition?
And what about the employment relationship between a disabled person and a PCA, or the intimate relationship between the partners? If both partners have an assisting attendant, then the circle grows. If one or both partners are under 18, yet a new set of considerations arise. An additional level of complexity is added by relationships taking place in a hospital, nursing home or other institution.

Gerrad and Laurie are adults living in the community, but their experience with assisted sex has been a mixed bag and anything but simple. Their sex together without intercourse was fun, but when they tried to add intercourse to the menu it turned out to be much more work and added pressure than they’d expected. Had PCA-assisted sex been a more accepted and known option, Gerrad and Laurie might have been able to make it work to their advantage. As it is, they are a couple no more.

Addressing the complex issues of PCA-facilitated sex is truly the next frontier in sexuality and disability research and advocacy.

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