New project targets misconceptions about sexuality and disabilities

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At his high school in Aurora, Ont., Grade 9 sex ed stood out for Andrew Gurza, just not for the usual reasons.

“I remember being asked if I should leave the classroom for sex ed because, what do I need it for?” said Mr. Gurza, who has cerebral palsy and is now 38.

The prejudice that disability and sex don’t mix persists today, with disabled people shut out of critical conversations about consent and sexual health. Sex ed curricula make scant reference to those with physical and developmental disabilities. The same discomfort lingers in health care settings, where disabled people find themselves talked down to when they seek answers about their sexual health. The fallout can be significant.

“I haven’t gone on a second date,” said Mr. Gurza, a disability awareness consultant in Toronto. He added: “The emotional reality of not having a sex ed curriculum, it really does have an impact on your socialization, your sexuality, your sense of self as you get older.”

A new project is poised to begin addressing the exclusion of disabled people from receiving information and care in the sexual health realm. Late this summer, the federal government pledged $2.8-million to sexual health organizations across the country to improve education and services for underserved youth, including those with autism and physical disabilities. One goal of the two-year project is to break down misconceptions and stigma in schools and health care settings around the sexuality of these historically overlooked populations.

In Calgary, the Centre for Sexuality is receiving about $2-million to develop a relationships and sexual health education program for LGBTQ2 youth, First Nations communities and people with developmental disabilities. The latter group includes those with intellectual and learning disabilities, cerebral palsy and autism spectrum disorder. The project will be aimed at guardians, paid support staff, medical students, nurses and doctors, and include guidance and training on how to address sexual health issues with these populations, according to Pam Krause, the centre’s president and chief executive.

At the same time, the Sex Information and Education Council of Canada (SIECCAN) is receiving more than $800,000 to create sexual health toolkits geared toward autistic youth and those with physical disabilities. The goal is to better inform educators, health professionals, occupational therapists, physiotherapists and community social workers.

Experts and advocates welcome the move, saying it’s long overdue. “We don’t talk about sex and disability,” said Mr. Gurza, a member of SIECCAN’s working group. “This is a groundbreaking thing they’re trying to do.”

To begin, the two organizations are speaking with educators, researchers, health professionals and community organizations already working with these groups. Crucially, they’re also consulting disabled and autistic people themselves.

“One of the criticisms I level at autism services is that it has to be non-patronizing,” said Bridget Liang, a York University PhD student who researches autistic and transgender experiences, and whom SIECCAN staff consulted on their toolkit.

Teachers and care practitioners need to follow two guiding principles with these populations: bodily autonomy and self-determination, said Ms. Liang, a disability and LGBTQ consultant.

Beyond this, experts say there are specific considerations to make, both in sex ed and at sexual health clinics, for those with autism or physical disabilities.

“It could be communication, mobility or sensory differences. These are not always accounted for in existing sexual health education or information that’s provided,” said Yi Wen Shao, project co-ordinator at SIECCAN.

For example, conversations about communication and consent may have to go further between disabled people and their sexual partners, Mr. Gurza said.

“As someone with a physically complex disability, if I say ‘yes’ to having a sexual encounter with somebody, I’m also saying ‘yes’ to them getting me out of my chair, getting me undressed, providing me care to make sure I’m okay. We need to talk about, what does ‘yes’ mean?”

Mr. Gurza said general sex ed that addresses disability would help answer questions and curb ignorance among non-disabled students. For youth with disabilities, “it’s most important because they need a place where their bodies and their experiences are seen.”

For those with autism, sex ed also requires some tailored knowledge.

“Neurodiverse people tend to have much higher sensory experiences. A lot more things can be painful or numb,” said Alina Kislenko, founder of Guelph’s ADHD & Spectrum Centre, where all practitioners are neurodivergent, including Mx. Kislenko, who has ADHD and is autistic.

“Sensory consent would be really valuable,” Mx. Kislenko said. “What kind of touching is a sensory overload? Are you okay with the sensation of kissing? ... What temperature should the room be when we have sex? It could even be the texture of the sheets might make their skin itch.”

Sexual health clinics can also be difficult environments. Noise, fluorescent lighting and medical staff who are abrupt and fail to explain what will happen during a sexual health exam can be problematic.

“The best we can do in health care settings is be flexible, responsive, able to communicate and ask questions around consent,” Ms. Liang said.

For some with physical disabilities, concerns include whether doctors’ rooms will have specialized equipment, such as a lift, to properly conduct sexual health exams or a forensic examination after a sexual assault.

“Train the doctors, train the nurses about ableism, about how to help somebody,” said Mr. Gurza, who recommended personal support workers train nurses in techniques such as transfers.

The Guelph ADHD & Spectrum Centre offers teenagers support groups where they can openly discuss relationships, first dates, online dating profiles and how to tell whether someone’s flirting.

Extending sexual health education and care to neglected populations ultimately serves everyone, Mx. Kislenko said.

“Very often, the things that are really good for ADHD and autistics are good for everyone because they’re just the kindest way to do things. They’re the most individualized, taking into consideration the most people’s needs.”