The Right to Pleasure

by Bonnie Zylbergold on March 15, 2007

There’s nothing wrong with me. I want to do this, I’m choosing to do this, and I don’t mind doing this exchange, money for sex. I prefer to do that than have my situation therapized.

That was all Dr. Russell Shuttleworth needed to hear before taking his long-time friend and employer—a thirty-three-year old man living with Cerebral Palsy (CP), confined to a wheel chair and resigned to communicate via head pointer and alphabet board—to the strip club.

Out of the plethora of issues facing the physically and developmentally disabled, how a virile man with CP has sex doesn’t usually make the top ten. For the most part, discussions around disability and sexuality have remained off limits. Conversations regarding actual physical, sexual experiences and sexual expression are not typical of the genre; only recently has effort been made to acknowledge and investigate the complex nature of the subject.

One such undertaking can be found in the March 2007 issue of Sexuality Research and Social Policy: Journal of the National Sexuality Resource Center, which focuses specifically on the intersection of sex and disability. Challenging what scant dialogue exists, the journal examines the sex lives of lesbian, gay and bisexual people with disabilities (PWD), as well as sexual rights, sexual citizenship, sexual access and sexual facilitation regarding PWD. Shuttleworth, who specializes in medical anthropology with a focus on disability and sexuality, is serving as guest editor. “Disabled people are in a sense excluded form society’s definition of what a sexual subject is,” Shuttleworth explained during a recent interview with the NSRC. “But I think things are slightly changing. There’s a push now to provide some kind of sexual expression, sexual possibilities for this group.”

How exactly one goes about facilitating or providing for such “sexual possibilities” is where things get complex. It is also the focus of Shuttleworth’s most recent research. A decidedly forward-thinking take on personal assistance, sexual facilitation can include anything from helping place PWD into sexual position to finding a sex worker for a client.

Such considerations are more common than people might think. Before entering the academic arena, Shuttleworth worked as social worker assisting PWD. During this time, he discovered how prevalent sexual assistance was, noting “some kind of underground connection between the (disabled) men in terms of that they turned each other onto different sex workers in the community.

“Getting people to talk about it and acknowledge it, though, is obviously an issue,” he said, referring, of course, to the fine line between sexual assistance and sex work. “When it comes to the intellectually disabled community, all sorts of questions around competency come into play. When is a person competent to consent, or to initiate some sort of sexual relationship?”

Oftentimes, in efforts to protect PWD, their sexual agency is taken away from them, Shuttleworth added. Policies are generally skewed to favor protection from abuse over rights to sexual agency.

With little legal framework currently in place, personal assistants are left to fend for themselves. Awkward questions like, “when does an assistant become a part of the actual sexual situation and is no longer just assisting?” simultaneously illustrate the need for set policies and the difficulties inherent to drafting them.

Recalling an incident where a staff member was fired after masturbating a CP patient, Shuttleworth pointed out just how problematic this lack of defined policies has become: “She (the staff member) had thought it was okay, ostensibly because this man couldn’t do it himself and he needed some sexual relief or expression, whatever you want to call it. From her point of view, it wasn’t sexual (for her).”

Exactly how long it will take, how many people will be fired, and how many PWD will be denied sexual access until guidelines are created is unknown. Many believe that sexual facilitation should be a standard issue in job interviews for personal assistants, where PWD have the capacity and the courage to ask, “Can you, or will you, do this for me?”

See original at NSRC

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