“Most of the challenges are a result of the widespread myth of asexuality and other negative stigma surrounding people with disabilities,” said Dr. Jan Willem Gorter, a physiatrist who runs a teen transition clinic at McMaster.
Gorter was speaking with Dr. Natasha Johnson, a pediatrician in adolescent medicine at McMaster, at the annual conference of the Ontario Association of Children’s Rehabilitation Services in Toronto yesterday.
Studies of youth with cerebral palsy and spina bifida show that while most wish to have a partner, less than a quarter have a steady boyfriend or girlfriend, Dr. Gorter said. “Friendships and relationships are just as important to them but their level of social participation is challenged."
Youth with disabilities report barriers to getting together with friends and participating in after-school activities and say they often can’t get out because of a lack of transportation. Anxiety about body image and low confidence are also factors, as are physical problems like spasticity and fatigue.
Youth don’t typically receive the sex education they need as it relates to their specific disability, Dr. Johnson said.
For example, they need to know how contraceptives may interact with other medications they take. The oral contraceptive pill can interfere with anti-seizure drugs and increase the risk of blood clots. Depo-Provera, a birth-control injection, can reduce bone mineral density.
Youth with spina bifida have a greater risk of having children with a neural-tube defect, so they need to understand the importance of taking folic acid.
Dr. Johnson noted that youth with disabilities are twice as likely to be victims of sexual abuse. “They have multiple care providers, they are dependent for sensitive personal care, they may not have the language to (report abuse) or they may lack an understanding of what is appropriate.”
Dr. Gorter said that stereotypes make it less likely that health workers and parents talk to youth with disabilities about sexuality.
Sexual development needs to be discussed early and often with children and their families. “They need to be given permission to talk about it,” he said, noting that he has youth in his clinic fill out a transition profile that includes areas like education and employment and intimate relationships. In the latter, youth check off which of these statements best describes them: ‘I don’t have experience dating. I have experience dating. Or I am/or have been involved in an intimate relationship.’
“If the teen doesn’t have experience, that’s an opening to ask: ‘What would dating look like for you? Are you interested in boys or girls – or both? What are your desires and how can we help you?”
Dr. Johnson said we need to teach young children the names of body parts and appropriate physical boundaries and to acknowledge sexual interest as an expectation in all children. Teens should be given the opportunity to speak with a health professional about sexuality privately.
“We need to be aware of our own assumptions,” she said, recalling a 12-year-old client with physical and learning disabilities whose short stature made her look much younger. “She told me she was attracted to males and had been dating since Grade 1. We can’t make any assumptions.”