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January-February 2014

Let’s (not) talk about sex

Java Nguyen

JanFebconvoheartsInside the silence behind sex, dating, and disability

It took less than 30 seconds for the date to go from promising to very bad. After some online chatting, Steve* was excited to meet Kayla, the 24-year-old law clerk he connected with on Plentyoffish. They’d decided on Toronto’s Bull and Firkin Pub, one early evening in August 2012. He spotted her first: strawberry blonde hair, pouty lips—even more attractive in person. Steve, a 27-year-old publicist who has cerebral palsy, uses a pair of canes or a wheelchair for mobility. Tonight, he brought the chair. He smiled at her and headed toward the table. Approaching, he saw Kayla’s calm expression change. She looked puzzled, he says, like a lost child. Her eyes darted down to his wheelchair.

Steve wondered why she looked confused: his dating profile clearly showed him seated in a wheelchair. Plus, it was Kayla who had messaged him first. Maybe she didn’t see his picture? Maybe she thought he was in a Halloween costume? Within two minutes of meeting each other, Steve knew the “maybe” didn’t matter—it was clear, he says now, that Kayla was no longer interested. Her eyes wandered as they chatted. She smiled at her phone more than him. In between sips of his Miller Genuine Draft, Steve asked Kayla the regular get-to-know-you first date questions. She responded with short answers. He says he wanted to sway Kayla’s perception of him, but nothing charmed her. Soon, he just wanted to leave, but didn’t want to be rude. The date lasted 45 uncomfortable minutes, before they decided to split the bill. As Kayla chatted on her phone, Steve backed his wheelchair out from the table and waved goodbye. She waved back limply, still talking on her phone.

She never mentioned his wheelchair. Neither did he. That’s what disappointed him the most: he understood why she was uninterested without her having to say anything.

While growing up, Steve was smothered with attention. “I don’t wanna talk shit or whatever,” he says with a laugh, “but I was a really cute kid. Like really, really cute—just darling.” Based on his own childhood experiences, Steve observes that people tend to be more receptive and doting to kids with disabilities. Now as a grown man with a boyish face and icy blue eyes, Steve says people are generally nice to him. When he goes out, strangers tell him it’s cool that he’s just a guy living his life, which is true. Sometimes, however, he feels like people look at him the way they look at mascots at football games.

As for dating, it’s a minefield of challenges: Before worrying about what to say or what to wear on a date, Steve—like many people with disabilities—feels he has to convince a woman that he’s a human being too (see: Kayla). He must convince them, he says, that his physical disability doesn’t negate his ability or desire to date and have sex—not such an easy task considering the challenges.

Here’s an appalling revelation: Many people believe those with disabilities cannot, will not, and should not contribute to the future of the human race, writes Tobin Siebers, a professor at the University of Michigan, in an essay published in Sex and Disability in December 2011. Such people believe those with disabilities are not capable of reproduction, but if they do manage, the expectation is that the results will be tainted. The ability to reproduce, adds Siebers, is also what society believes makes someone a “quality” human being. Someone who is infertile or physically and mentally unfit for sex is considered “less than human.”

It’s no wonder, then, that a culture of silence has cocooned the disability community. “Sexuality is often the source of our deepest oppression and pain,” says Anne Finger, an American disability issues writer and activist who became disabled after contracting polio as a toddler. Finger says it’s easier for people with disabilities to talk about—and formulate strategies for changing—discrimination in employment, education and housing than it is to delve into their exclusion from sexuality and reproduction. It’s even less easy to talk about the possible need for assistance during sex, the stigma, or even how to overcome disparities in able-bodied and non-able-bodied couples. Sexual rights are not a priority in the disability rights movement, says Finger; it’s creating an image of “the able disabled.”

Unfortunately, the refusal to talk about sex and disability has created plenty of misinformed assumptions—such as the ones Siebers cites and more—and a widespread denial of sexualities and rights. In 2006, about 4.4 million Canadians reported having a disability according to Human Resources and Skills Development Canada statistics. The three most reported disabilities were lack of mobility, pain, and reduced agility among people aged 15 and over. It’s hard to believe none of these millions of people desire sex.

JanFebConvoHearts2In 2011, Tim Rose and his wife, Natalie Sanborn, founded The Rose Centre for young adults with disabilities. The centre’s mission, in part, is to promote discussion and awareness on disability and sexuality (its secondary goal is to promote positive focus on disability, relationships and sexuality in the general public). Rose, 28, has cerebral palsy spastic quadriplegia while Sanborn is able-bodied. They met through a mutual friend before Rose moved to England in 2011 for his studies. The distance didn’t stop the romance: Now, the two are newlyweds. Rose says they often get strange looks and questions. “She’s been asked if she’s my mother or my nurse,” he says. Still, the couple says they choose to remain light-hearted. Instead of getting angry, they joke that Sanborn will never have to carry groceries—she can just hang them on the back of Rose’s wheelchair. This same positive attitude led to the Rose Centre; with no resources to help navigate dating with disabilities, the two decided to create their own. The centre doesn’t have a permanent space (yet), but it hosts monthly discussion nights and social events at Ryerson University.

Rose says people of all backgrounds and disabilities attend the centre’s events and meetings. “A lot of people who come say they’ve never had anyone to talk to about this,” he adds, “They always keep things internal.” Many attendees lack knowledge and experience in dating. Some  have no experience in, as the colloquial term goes, “making out.” When it comes to knowledge about dating, and such romantic and sexual relationships, he says, many attendees are stunted in their knowledge. And, perhaps embarrassed to talk about it. In situations like these, Rose and six volunteers can start the conversation by talking about their own personal struggles—like how Rose disliked having sex until he “redefined” sex and made it comfortable for himself—and ways to overcome them.

It doesn’t help that sex is such a taboo subject, period. Because of this people want to be careful about what they say, says Demian Brown, a Toronto psychotherapist. That includes people with disabilities and those without. The spectrum of disabilities, and the unique needs, experiences, and challenges, are vast. Perhaps it goes without saying that cerebral palsy isn’t the same as muscle atrophy, and muscle atrophy isn’t the same as spina bifida. People don’t want to look like they don’t know enough about the issue, says Brown. They fear appearing insensitive, ignorant or bigoted. So they clamp up. “If there’s stigma in general, it wouldn’t be easier for one person with a disability to talk about sex to another person who has a different disability,” says Brown. He says it takes someone brave enough to talk about these issues, first,  before communities—and society as a whole—will join the conversation, and grow it outward.

When it comes to the dating world, this sense of the taboo can translate in weird, demeaning ways. Helena*, a 33-year-old Master’s student at the University of Toronto with spinal muscular atrophy, is engaged to her partner of two years. She and her fiancé have talked about having a child one day. It may be difficult—“I would probably require a surrogate and genetic testing before we are able to have one”—but Helena is happy. It wasn’t always that way. Back in her 20s, she says, many guys saw her as “just” a friend or a sexual partner—but not somebody they could form a relationship with.

Helena felt she had to decide if she wanted to be alone and not experience intimacy—or if she should take a chance, meet men online and explore her sexuality. She chose to embrace her sexuality. Mostly, she met men online. She and whoever she messaged would express upfront their interest in having sex. But she also looked for romantic partners. Sometimes she went on dates to develop a relationship, sometimes it was for “other experiences.” Helena thinks of sex as a natural and beautiful part of human experience that should be celebrated. “I never felt ashamed of it. I’ve always been an explorer of life experience.” Helena says she had several sexual partners as a result, but very few relationships throughout her 20s. The men she met while in university wanted to have sex with her out of curiosity or saw her as “an experience.” Helena doesn’t mind. She thinks maybe they craved a new experience, like how she wanted different sexual experiences to learn more about herself.

This is not uncommon. Many people are sexually attracted to people who have physical disabilities—because of their disability. They are called “devotees.” Unsurprisingly, devotees are a wildly controversial topic. Among the many concerns are: whether these type of relationships exploit people with disabilities; whether it turns people into a fetish object; and also what messages are being sent when the disability is put first. Raymond J. Aguilera is a disabled California-based writer who writes on queer and disability issues. He says while there are some devotees who may fall into the “concern” category, there are disabled men and women who choose to participate in these relationships to a devotee. Although he says it’s impossible to say devotees are “good” or “bad”, he believes it’s sex-negative that most of the scholarship in this area portray devotees as predatory and exploitive.

More often, though, this outside culture of silence is fed by the seemingly unshakeable misconception that people with disabilities are asexual. They can’t have sex; they don’t want to have sex. Steve, who says he has a decent amount of sexual experience, says people assume his penis is shrivelled or doesn’t work. “It’s almost like old people having sex,” he says. It’s easy [for people] to convince themselves that ‘they’ don’t do it or ‘it’ doesn’t work.” In one stereotype, mainstream society dismisses people with physical disabilities as undesirable or incapable sexual partners.

Rose knows all about this misconception. Many visitors who come to The Rose Centre say some people assume they’re asexual or incapable of having sex. “In my experience,” he says, “people with disabilities are some of the horniest people I’ve met.”

Sometimes, though, mobility can be an issue—and sex can be physically impossible without personal assistance. In Canada, the profession of personal support workers (PSWs) is unregulated. Support workers are hired directly by clients and work in the client’s home, or they’re hired by agencies, hospitals, and facilitated living buildings. In all settings, their job is to assist clients with daily chores such as cooking, showering and dressing. Many agencies do have policies stating that personal support workers shouldn’t assist their clients with anything related to sex. Due to the unregulated profession and flexibility to create their own policies, though, some agencies or individual personal support workers may choose to provide sexual assistance. This is most often the case if a support worker and client develop a strong enough relationship that the worker is comfortable assisting in sex-related activities, such as manoeuvring their clients in sexual positions for their partner. “It happens under the table,” says Steve, “They become friends.”

But it doesn’t always end well. Brown, the Toronto psychotherapist, did a placement in a mental health hospital in Whitby in 2004. While there, he heard about two support workers—not at his hospital—who had helped their patients with sex and were subsequently fired. Brown and his colleagues realized if they didn’t address these issues, some patients would be at risk. There could be patients living with serious mental or physical conditions consenting to sex with other patients who were more mentally aware or physically able for sex—this breached issues of safety and ethics. Brown used that insight to develop the groundwork and research to create a policy, guided by the belief that patients had the right to engage in consensual sex with other patients. In the end, workers in the hospital were, in theory, allowed to help their patients during sexual encounters if they strongly needed assistance—an issue that, he says, never arose while he was there.

The policy outlined how workers can handle these situations. Long-term patients who expressed desire and consent to have sex would be led to conjugal rooms supplied with condoms. Though not officially part of the policy, workers could assist patients out of wheelchairs, manoeuver them in positions  or supply them with birth control if needed. Before the policy was created, discussion on sex and disabilities was often discouraged or ignored. Differing moralities of each individual contributed to the fear of being rejected for their personal views. “No one wants to expose their sexual views,” says Brown. “If you talk about patients’ sexualities, you’re implicitly talking about yourself.”

Rose has consulted PSWs to assist him and a past girlfriend, who also had disabilities, for sexual encounters. “It can be awkward and a little weird,” he says, “but that’s just part of the relationship.” It’s a healthy attitude to have, especially considering that, as Rose says, the topic of assistance during sex is rarely discussed. People need help, he adds, but they feel weird asking for it—it’s not the same as asking for help cooking, and few guidelines have been put in place to make it so. The thought of refusal can be devastating, and it happens. Helena has heard several stories where workers denied service to clients who needed help during sexual encounters. “Even in long-term monogamous relationships with consenting adults,” she says, “service is refused because the personal support worker is uncomfortable.” Because of varying policies and moral beliefs, not all workers are trained or comfortable enough to handle these situations.

Steve deactivated his profile on Plentyoffish last February. Due to medical reasons, he says he didn’t go out much because of pain in his back and joints. Dating fell low on his list of priorities. Mostly, he didn’t think most women were capable of dealing with his chronic pain and “other crazy things” that many people don’t understand. At the time, it seemed easier to just avoid relationships.

But then he met Crystal*, a petite, brunette woman, in April 2013 at a networking seminar at The House of Moments, an art gallery and restaurant. Three weeks later, Crystal asked Steve out on a date. In June, the two became a monogamous couple. Like most fresh couples, they had a lot to learn about each other. Steve learned that Crystal has mild cerebral palsy. He also noticed her quirks, like how she sometimes bites her bottom lip when she thinks or when she bobs her head rhythmically to her favourite songs. Their relationship is getting serious, but they’re taking it slow. They’re savouring their time together. As for the sex: Steve says it’s both fantastic and plentiful.

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