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Joanne Downing and her son Matthew, 19, at the Holland Bloorview Kids Rehabilitation Hospital on June 19, 2019. Downing is a family leader at Holland Bloorview, which has created a new tool to help parents of youth with disabilities who are looking for insight into how to meaningfully speak to their kids about sex.Fred Lum/The Globe and Mail

Having “the talk” fills most families with dread. For parents of teens with disabilities, the conversation often takes on an added layer of complexity. Parents want to keep their especially vulnerable children close and safe, while instilling independence and strong self-esteem. They want their kids to assert their own boundaries, even as these children often require assistance with many aspects of their daily lives. Parents want their youth to go out into the world and have healthy relationships, but they worry because disabled people are at increased risk of abuse.

In a bid to help, Toronto’s Holland Bloorview Kids Rehabilitation Hospital launched a new online tool Monday designed for parents looking for insight into how to speak meaningfully with their disabled youth about sex. The new workshop, available free to the public off the hospital’s YouTube channel, covers everything from good relationships and consent to gender identity and social media – this for a cohort often left out of the sex ed discussion, thanks to lingering stigma around disabled people’s sexuality.

“We have needs and desires as well. We need to be educated on how to navigate these situations and have these conversations without it feeling like it’s such a taboo topic,” said Emily Chan, who co-designed the new workshop as chair of the hospital’s youth advisory council.

Chan, 22, has centronuclear myopathy, a rare neuromuscular condition. She said parents of those with disabilities often keep a “tight rein” on their children, but she urged them to speak with their kids about healthy relationships early, “not waiting until we’re heading into adulthood, or already in adulthood.”

The online workshop follows the release last week of new guidelines that recommended sexual health education be made available at short- and long-term care facilities serving youth with disabilities or chronic illnesses, with information geared toward their specific needs. Colleges and universities should offer comprehensive sex ed training to those studying to be caregivers and personal support workers for disabled people, according to The Canadian Guidelines for Sexual Health Education from the Sex Information & Education Council of Canada, a non-profit organization promoting sexual and reproductive health.

Joanne Downing sets the same priorities when she talks to her three children, ages 17 to 21, including her 19-year-old son Matthew, who has quadriplegic cerebral palsy and is non-verbal. Downing wants them all to be safe, respectful and make good choices.

“We talk about ‘my space, your space,’ and ‘good touch, bad touch,’” Downing, 57, said about Matthew. “He can understand whether or not he’s crossed that barrier or if someone’s crossed that barrier on him.”

Downing offered a family perspective for the new webinar and coached parents at two workshops held at the hospital over the winter. Talking to her own son, Downing uses proper terminology for body parts, and explains the difference between private and public space. One thing she recommends parents do with their disabled teens is differentiate between platonic friendships and romantic or sexual relationships.

“[Matthew’s] perception of having a girlfriend is someone of the opposite sex who’s a friend that he can hang out with,” Downing said. “He definitely likes girls and he flirts. He loves it. He knows pretty much every single swim instructor at the pool.”

Downing stressed the importance of striking a balance between autonomy and safety. Even though she’s involved in every facet of Matthew’s life and care, the mother has also taught her son how to ask for privacy.

Autonomy is critical to discussions of sex ed with this cohort, according to Yukari Seko, a research associate at Bloorview Research Institute, who along with social worker Gabriella Carafa developed the new online workshop. “Research shows that parents of children with a disability can be overprotective, and understandably so because they need more help,” Seko said. “But it can sometimes hinder their transition to adulthood. They need to learn and practice taking some risks.”

Opportunities to be independent – and to fail – are integral to figuring out what you want and don’t want in adult life, said Chan. “Youth need the chance to explore their environment and their relationships with others, to not be afraid to make mistakes and to learn from those mistakes,” she said. “You need to be able to get out into the real world and have those experiences to shape your personality, beliefs, values and how you approach different situations.”

At the same time, safety is a very real concern for these parents. Children and youth with a disability or chronic health condition are at an increased risk of sexual abuse, according to the Canadian Paediatric Society.

Miriam Kaufman, author of the Society’s report on this issue and the book Easy for You to Say: Q and As for Teens Living With Chronic Illness or Disability, said it is particularly important for parents of disabled youth to discuss consent, not only because these children can be more physically vulnerable but also because they’ve gotten conflicting messages about bodily autonomy all their lives.

“We have trained, from birth practically, young people with disabilities and chronic health conditions to put up with things that in any other context would be considered abuse: medical procedures, painful procedures … being held down for procedures and being told not to yell and to co-operate,” said Kaufman. “We train these kids from a young age that it’s okay for these strangers in the health care system to have access to their bodies. … They’ve learned that they don’t really have ownership of their bodies.”

It’s always a fine tightrope for parents of kids with disabilities, Kaufman said, who are trying to protect their children while helping them develop positive self-image. “Most parents also want their children to grow up sexually healthy, to be able to have relationships and be happy in those relationships,” Kaufman said. “They don’t want to totally freak them out about sexuality, in terms of protecting them.”

At Holland Bloorview, Seko urged families of disabled youth to educate themselves on these issues, but also to listen to their kids’ questions and observations.

“They are the experts of their life, too,” Seko said.

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