Toronto Star

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.”


 ?? NICK KOZAK FOR THE TORONTO STAR ?? Ryan Shannan, left, and Effie Biliris, right, both live with disabiliti­es and have been dating for more than two years.
NICK KOZAK FOR THE TORONTO STAR Ryan Shannan, left, and Effie Biliris, right, both live with disabiliti­es and have been dating for more than two years.

Newspapers in English

Newspapers from Canada