What a young person is taught about sexual health will influence their behaviour and views about sex as they grow up.
Unfortunately, for many youth with disabilities, these lessons never come — neither in school nor in conversations with health care providers.
A new literature review found that of 5,500 research articles on talking to youth about sexuality, only two examined the topic of communication with a focus on youth with disabilities.
“There’s very little dedicated sex education for young people with disabilities,” said Dr. Amy McPherson, lead researcher and a scientist at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
“I’ve spoken to a few people who were either told to leave or expected to leave those classes because it wasn’t going to be relevant for them.”
McPherson says throughout history, people with disabilities have been assumed to be asexual, or without sexual desire. This stereotype can often lead to those youth being left out of important conversations about sexual health and safety.
Canadians with disabilities are more than twice as likely as the general population to be victims of violence, per Statistics Canada.
Nearly four in 10 disabled people 15 years of age or older not living in institutions report experiencing robbery, sexual or physical assault, and the issue was most acute among people with cognitive or mental health disabilities, who reported victimization rates four times higher than the general population.
For people like Andrew Gurza, a queer Toronto man who has cerebral palsy, this reality is scary and frustrating.
Talking about disability is seen as a taboo, he says, and so is talking about sex — making them two topics rarely ever mentioned in the same breath.
“But disability is, for many of us, part of our day.”
Carmen Logie, Canada research chair in Global Healthy Equity, says this is a unique “intersection of stigma.”
“We don’t live in a sex positive society, and sex is often stigmatized and associated with disease versus pleasure,” she said.
“So youth with disability are at the intersection of stigma toward sex, and in particular, youth’s sexuality and stigma toward disabled folks’ sexuality.”
In his work as a disability awareness consultant, Gurza urges health care providers and educators to see young people with disability as people who will one day be sexually active in the same way as others.
“When you exclude them from these conversations about sex and sexuality, when they go out into the world and try to engage with people … they won’t have a lexicon for that.”
“They won’t feel safe or secure in their bodies.”
Sexual education is crucial for all young people
For any young person, missing out on a robust education about sexual health education can put them at an increased risk for sexually transmitted infections (STIs) and unplanned pregnancies, among other things, says Alex McKay, the executive director at the Sex Information and Education Council of Canada.
“We know that sex education can have a positive impact… so it is worrisome that some children will not receive that education,” McKay previously told Global News.
One 2014 report on young adolescents and sexual health says early intervention is key in building healthy future relationships.
When children are not properly educated on matters related to their sexual well-being, they are vulnerable to harmful sexual behaviours, the United Nations Educational Scientific and Cultural Organization noted.
Other research suggests that teaching kids the proper names for their genitals at a young age is important “given that children are especially vulnerable to sexual abuse during the preschool years.”
McKay says that if a child does not know how to identify their genitals, they are going to be “less well equipped to report inappropriate touching or abuse.”
When kids receive accurate and age-appropriate information about sexual and gender identity, Mackay says, they are more likely to practice acceptance and promote inclusivity. This is especially important for children who may be members of the LGBTQ2 community.
This conversation is even more critical for youth with disability, who are more vulnerable to sexual violence. The education is also key to providing a foundation for people with disabilities to voice their unique “needs” when it comes to sex.
“I was … asking people with disabilities how they talked to a partner about their disability, and some of them didn’t even mention their disability,” McPherson said.
This can lead to miscommunication and distrust between partners, but it can also make sex dissatisfying for people with disability.
“This isn’t actually about sex — it’s about the conversation, getting kids comfortable with their body, encouraging them to explore their body, talking about appropriate and inappropriate touch.
“All of these things lead to healthy relationships.”
Youth with disability need safe spaces
Young adults aged 18 to 25 with self-identified disabilities told McPherson that, moving forward, they want health care providers to raise the topic of sexual health without making any assumptions or judgments.
“The overwhelming theme was about creating safe spaces and how health care professionals could create safe spaces for them to feel that they could talk about something as vulnerable as their sexuality,” she said.
“They didn’t want to have to put it out there themselves the first time.”
Youth are also looking for understanding from health care providers that sex and sexuality are very different for everyone.
This can present a unique challenge for people with disabilities, because they often remain with one health care provider over many years.
Logie says the approach to teaching all youth — but especially youth with disabilities — about sexual health needs to be sex-positive and intersectional.
“I think sex-positive, LGBTQ2+ and disability inclusive, intersectional approaches to comprehensive sexuality education are needed for youth with disabilities to realize their sexual and reproductive health and rights.”
— With files from the Canadian Press and Laura Hensley