Confronting the gaps in sexuality and disability
Youth say it’s time doctors and educators stop acting like sexual health and disabilities are mutually exclusive
Effie Biliris and her boyfriend, Ryan Shannan, were friends for years before they decided to jump into a romantic relationship.
Biliris remembers years ago heading home from a group meeting she and Ryan were both part of — they got on the same bus, got off at the same stop, and realized for the first time they were neighbours. Now, they’re more than two years strong.
Living within a kilometre of each other, they’ve spent most of the pandemic together, listening to music, hanging out by the water and spending time outside.
“‘What took you so long,’ ” Biliris laughs, remembering what her friends and family said when the pair finally got together.
But Biliris has rarely seen the same kind of support for relationships among people with disabilities in the able-bodied world. She lives with cerebral palsy and hearing loss, and Shannan has cerebral palsy and uses a mobility device.
Conversations about relationships within this community are few.
And when it comes to sexual health and exploring sexuality in health-care settings, Biliris says the lack of consideration for people who have disabilities has an even bigger impact.
“Sexuality in health care is not talked about whatsoever unless you bring it up personally,” Biliris told the Star. But some patients may not know how to broach the conversation, so it’s important for doctors to be proactive with
both youth and adult patients, she says.
Sexual health, Biliris said, is “still a part of health.”
“It’s just as important as physical health, as mental health,” she said. “Sexual health is a thing that is natural for people and doctors should not shy away from it.”
Biliris, 29, created an art piece for a digital exhibition called “Illuminating,” which features young adults living with disabilities in Toronto sharing how they’ve navigated their sexuality in health-care settings.
The exhibition is online now and was organized by Holland Bloorview Kids Rehabilitation Hospital, in an effort to confront the gaps in sexuality and disability. Youth were able to take photos that were later stylized into digital art, and contribute statements about what sexuality means to them.
A senior scientist at the hospital, Amy McPherson, worked to co-ordinate the show with fellow scientist Fiona Moola.
McPherson said, while conversations about sex with youth are tricky for many “we tend to talk even less to youth with disabilities about sexuality.”
In her research on health and wellness among youth with disabilities, McPherson has heard multiple stories of them “being asked to leave sex-ed classes in high school because it doesn’t apply to them.”
“People don’t think that youth with a disability can be sexual beings, I think,” she said. “I think they have a very narrow view of what sex is and what a body who has sex looks like.”
Ignoring these conversations totally means a lot of agency gets lost, as well as education about consent. This can be particularly harmful considering people with disabilities are more likely to be victims of sexual assault. A 2018 investigation by NPR found that in the U.S., people with intellectual disabilities were seven times more likely to be victims of sexual assault than those without.
When it comes to talking about sexuality with youth McPherson says there are ways to have age-appropriate conversations about it from birth.
If you define sexuality as being about bodies and friendships, you can teach youth about appropriate and inappropriate touch, privacy, boundary setting and what a good friend is, McPherson lists.
It’s “giving kids the building blocks for healthy relationships later in life,” McPherson said.
“People with disabilities can express their sexuality in whatever way they feel comfortable,” McPherson said. And it can range from painting their nails and dressing up and feeling good, to sexual intercourse and self pleasure.
With this omission of sexual health care for people living with disabilities, there’s little talk about health information that could be specifically tailored to them: how to use condoms without fine motor skills or family planning while accounting for genetic disorders.
The information that does exist is quite scattered, so Holland Bloorview is working on a hub of disability-specific sexual health information.
And there’s plenty of room for other doctors and health clinics to better provide for this community. McPherson asks questions like are examination tables accessible, or the clinics themselves? Are the questions about sexual health even being asked?
For Christine Hill’s teenage daughter Emma, the answer is no. Emma lives with Leigh’s syndrome, a neurological disorder, and uses a wheelchair, and she said in all of her doctor’s visits — even times when mom is asked to leave the room — sexuality has never come up.
“There was nothing,” Emma recalled. “There was no ‘are you sexually active’ conversation, there was no sexuality conversation, there was none of that.”
Hill agrees that excluding sex conversations from doctors appointments needs to change. “I think that every person, with a disability or not, should be able to form a relationship with their primary care (provider), that allows for conversations around their whole being including their sexuality.”
Emma said trying to figure things out on her own left her “feeling empty and broken.” Over time, Emma started to find more resources and realized she is asexual and started to make it known her pronouns are she/they. At one point in our interview, Emma and Hill chat to each other about just how to define asexuality — it’s a spectrum, Hill says, and Emma adds that asexual people generally experience a lack of sexual attraction. “Correct me any time,” Hill smiles.
Hill says they’ve always had an inclusive house, but worries for kids in other families that may have a different situation. And even for Emma.
“I wish there’d been more opportunity for her even outside the house to have had those conversations even earlier, so that she didn’t need to go through a number of years where she felt like she was even more different than she already feels,” Hill said.
Emma agrees that more opportunities would help: “It would be easier for people to grow up and find themselves and succeed.”
“People don’t think that youth with a disability can be sexual beings. I think they have a very narrow view of what sex is and what a body who has sex looks like.”
AMY MCPHERSON HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL