Effie Biliris and her boyfriend Ryan Shannan were friends for years before they decided to start a romantic relationship.
Biliris recalls that years ago she headed home from a group meeting she and Ryan were part of: they got on the same bus, got off at the same stop, and realized for the first time that they were neighbors. Now, they are over two years old.
Living within a kilometer of each other, they have spent most of the pandemic together, listening to music, hanging out by the water and spending time outdoors.
“’Why did it take you so long?’” Biliris laughs, remembering what his friends and family had to say when the couple finally got together.
But Biliris has rarely seen the same kind of support for relationships between people with disabilities in the healthy world. She lives with cerebral palsy and hearing loss, and Shannan has cerebral palsy and wears a mobility device.
Conversations about relationships within this community are few.
And when it comes to sexual health and the exploration of sexuality in healthcare settings, Biliris says the lack of consideration for people who have disabilities has an even greater impact.
“You don’t talk about sexuality in health care at all unless you bring it up personally,” Biliris told the Star. But some patients may not know how to approach the conversation, so it’s important that doctors be proactive with both young and adult patients, he says.
Sexual health, Biliris said, “is still part of health.”
“It is as important as physical health, as mental health,” he said. “Sexual health comes naturally to people and doctors shouldn’t shy away from it.”
Biliris, 29, created an artwork for a digital exhibition called “Illuminating,” featuring young adults living with disabilities in Toronto sharing how they have navigated their sexuality in healthcare settings.
The exhibit is online now and was organized by Holland Bloorview Children’s Rehabilitation Hospital, in an effort to address the gaps in sexuality and disability.
The youth were able to take photos that were later stylized into digital art and contribute statements about what sexuality means to them.
The hospital’s lead scientist, Amy McPherson, worked to coordinate the show with fellow scientist Fiona Moola.
McPherson said that while conversations about sex with young people are difficult for many, “we tend to talk even less with young people with disabilities about sexuality.”
In her research, which focuses on the health and well-being of young people with disabilities, she has heard several stories from them “being asked to drop out of high school sex ed classes because it doesn’t apply to them.”
“I think people don’t believe that young people with a disability can be sexual beings,” McPherson said. “I think they have a very limited view of what sex is and what a body that has sex looks like.”
Ignoring these conversations means that a lot of agency is lost, as well as education about consent. This can be particularly harmful considering that people with disabilities are more likely to be victims of sexual assault. A 2018 investigation by NPR found that in the US, 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 young people, McPherson says there are ways to have age-appropriate conversations about it from birth.
By defining sexuality as a matter of bodies and friendships, you can teach young people about appropriate and inappropriate contact, privacy, boundary setting and what makes a good friend, McPherson lists.
It’s about “giving kids the building blocks for healthy relationships in the future,” McPherson said.
“People with disabilities can express their sexuality in any way that they feel comfortable with,” McPherson said. And it can range from painting your nails, dressing and feeling good, to having sex and personal pleasure.
With this omission of sexual health care for people living with disabilities, little is said about health information that could be tailored specifically for them: how to use condoms without fine motor skills or family planning while taking disorders into account. genetic
The information that exists is quite scattered, so one thing Holland Bloorview is working on is a disability-specific sexual health information center.
And there is plenty of room for other doctors and health clinics to better serve this community. McPherson asks questions like are the exam tables or the clinics themselves accessible? Are questions being asked about sexual health?
For Emma, Christine Hill’s teenage daughter, the answer is no.
Emma lives with Leigh syndrome, a neurological disorder, and uses a wheelchair, and she said that in all her visits to the doctor, even 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 the exclusion of sexual conversations from medical appointments should change. “I believe that every person, disabled or not, should be able to form a relationship with their primary care (provider) that allows conversations about their entire being, including their sexuality.”
Emma said trying to figure things out on her own left her “feeling empty and broken.” Over time, Emma began to find more resources and realized that she is asexual and began to publicize her pronouns are she / them.
At one point in our interview, Emma and Hill discuss 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 anytime,” Hill smiles.
Hill says they have always had an inclusive home, but he cares about children from other families who may have a different situation. And even for Emma.
“I wish I had more opportunities for her, even outside the house, had she had those conversations even earlier, so that she didn’t have to go through a series of years where she felt 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, find themselves and be successful.”
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