TORONTO – If navigating the intricacies of dating and sexuality can be a pitfall-strewn path for adults with disabilities, it’s a veritable minefield for young people with physical challenges just setting out on the journey.
Whether in a wheelchair after a spinal cord injury or living since birth with a condition like muscular dystrophy or cerebral palsy, teens with disabilities face a double whammy – dealing with new sexual feelings while grappling with physical limitations that define how others may view them.
“Sexuality is fraught with all kinds of dangers and great things and insecurities for anybody – and for any teenager especially,” says Dr. Miriam Kaufman, head of adolescent medicine at Toronto’s Hospital for Sick Children.
But youth with a disability can find the idea of dating and sex especially overwhelming, given that they may have a poor body image along with performance anxiety related to their physical restrictions, says Kaufman, co-author of “The Ultimate Guide to Sex and Disability.”
“You might very well feel unattractive and you might have gotten a strong message from even your parents that no able-bodied person is going to be interested in you and that really your only chance is to find somebody else with a disability who might possibly be interested in you,” she says.
Such societal stereotyping, which dismisses people with disabilities as uninterested in and even incapable of sexual expression, can erode adolescents’ self-image and make them question their place in a world that typically goes by two by two.
Stacy, who has cerebral palsy and uses a wheelchair or walker to get around, says people with disabilities have the same “dreams and hopes” as most everyone else – including having a loving partner, getting married and having children.
“I think that sometimes people just assume that we can’t do that,” says Stacy, a university graduate in her late 20s who asked that her real name not be used. “And it doesn’t necessarily stop those desires, even if it’s physically difficult to do that.
“And sometimes it’s intensified because we see everyone in society doing it. Everyone cohabitates. And when you’re not, sometimes you feel it very keenly.”
Images in the media also underscore that feeling of being set apart, rarely if ever showing “sexy” youth or adults with a disability, says Kaufman.
“So to start with, you don’t even have a validation from the world around you that you are a sexual being, even though you know you are.”
Just starting a conversation with someone who has caught one’s eye can be especially daunting for young people with physical challenges, says Sandra Mills, a patient and family educator at Toronto Rehab’s Lyndhurst Centre for spinal cord injury.
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“You’ve got the engagement issue of dealing with stereotypes that exist around disability – and then you’re trying to introduce sexuality on top of that,” she says.
Michelle, a college student in her mid-20s with cerebral palsy, says most able-bodied peers don’t seem to see past her wheelchair, making it difficult to make male-female connections that might lead to dating.
During high school, she asked a classmate if he was going to the prom – not asking him to be her date, but only if he was attending, recalls Michelle (a pseudonym), a member of the youth advisory council at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
The guy was stunned, she says.
“He just kind of looked at me and said, ‘Are you going?'”
When she replied that she was, he asked: “‘Are you serious?’ “I said ‘yeah!’ Like why would I not go to prom?”
Lynda Roy, co-ordinator of the SexAbility program at the Anne Johnston Health Station, says she hears the same accounts repeatedly from young clients with disabilities during sexuality workshops put on by the Toronto community health centre.
“They start to share stories … and this story comes up with every group I’ve done a workshop with: ‘You know, I really liked this person and he came to me and said, I would date you if you weren’t in a wheelchair.’
“They think that that’s a real compliment,” Roy says of the able-bodied person making the statement. “And it’s absolutely not. It’s usually something that’s really deflating.”
Kaufman says what some teenagers with disabilities go through can be pretty heart-rending.
“Kids will tell me: ‘I’ve got really good friends, but I’m everybody’s buddy. And the gender of the people I’m interested in come and talk to me about their relationship problems.’
“‘But I’m thinking: What about me? I could be that person. They’re not treating you well. I could treat you better than that.'”
Beyond attitudinal hurdles, there are also physical obstacles that can make it difficult for teens and young adults with a disability to meet a potential mate. Traditional hook-up spots like nightclubs and bars, for instance, can make them feel further excluded, says Mills.
Not all “meet-and-greet” venues popular with young people are wheelchair accessible, she says. And for those that are, the interior layout can still be a barrier to connecting.
“All of the bar stools are high, so there are access issues. All of the conversation happens three feet above you … they’re standing, you’re sitting and all you see are belt buckles.”
Stacy says going out on a date, especially a first date, can be challenging for the most prosaic of reasons, leaving aside the normal jitters of getting to know someone new.
“There’s the transportation. You really have to plan things because you can’t say, ‘Oh, we’ll meet for coffee tomorrow.’ It doesn’t necessarily work like that.”
If there’s an instant connection, the date may last a while. If not, “it can be very awkward because you’re stuck there and you can’t leave,” she says, referring to waiting for pick-up by Wheel-Trans or perhaps a family member.
“And if you are living independently, maybe you have attendants that come in to put you to bed. So there’s aspects of privacy. When you’re developing a relationship, if it’s with someone else with a disability, maybe there’s that understanding.”
But with a non-disabled partner, that acceptance may not be there, says Stacy, also a volunteer youth adviser at Holland Bloorview.
Kaufman of Sick Kids says able-bodied people may also be reticent to ask about having sex with someone with a disability. “They might think that the other person is sort of fragile and that they shouldn’t be thinking about having sex with them, that it’s wrong.
“The first thing I tell young people is everybody can have sex – if you’re conscious, you can have sex. It might not be exactly the kind of sex (they imagine), but nobody has exactly the kind of sex as anybody else does.”
Just entering her 20s, Sasha would love to be in a relationship. She says she has no trouble “putting the moves” on guys she finds attractive.
But Sasha (not her real name) says her condition, an extremely rare congenital disorder called Klippel-Trenaunay syndrome, makes dating and finding that special someone difficult.
For the last four years, she has been in and out of hospital dealing with what she calls a “cosmetically disfiguring” disease, which causes vein malformations and an overgrowth of soft tissues and bones.
One of her legs is larger than the other and covered in large purple birthmarks, says Sasha, who cannot wear matching shoes because of open wounds on one foot that won’t heal and affect her ability to walk.
“It’s just a lot for a guy to handle, I think, especially at this age,” she says following a youth advisory council meeting at Holland Bloorview.
“I’m not saying it’s not possible to have a long-term relationship, but … most guys want a girlfriend that can go out and get drunk with them. They don’t want somebody who’s in hospital constantly.
“I just want to have a relationship with somebody who likes me for me, regardless of how I look and what I have to go through, and be supportive.
“Isn’t that what everybody wants?”
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