A recent study published in the Journal of Sexual Education found that people with Duchenne muscular dystrophy (DMD) and similar conditions want more inclusive sexual education that meets their unique needs. The study also emphasized the importance of raising awareness to help fight stereotypes about DMD.
To learn about how adults with muscular dystrophy experience sexual education, researchers talked with 30 English-speaking adults with muscular dystrophy in the United States. On average, the participants were 31 years old. All were assigned male at birth, most used he/him pronouns (93%) and about two-thirds (69%) lived with their parents.
About 77% of study participants received sex education at school, but it rarely mentioned disability. Many said important topics — like different ways to experience intimacy — were left out. Nearly half (47%) never talked about puberty or sex with their parents. Participants said this was often because parents assumed these topics didn’t apply to them.
Many turned to the internet or friends for sexual health information. But social media and popular culture often reinforced hurtful stereotypes about what men are expected to be like. Participants said these ideas often made them feel undesirable.
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The belief that others might not see them as desirable partners is probably why many of the people interviewed felt unsure about initiating conversations on family planning, the researchers noted. Even though 84% had thought about having children, more than half had never discussed it with anyone.
“Our findings highlight that individuals with muscular dystrophy face distinct barriers to sexual education and that young adults living with muscular dystrophy express a clear, compelling vision for change,” the researchers said.
Participants said they want sexual education that includes information for people with disabilities. This should cover topics like puberty, body image, masturbation and setting boundaries with caregivers. Many participants also stressed how important it is to have peer support and to show that sexuality is a normal part of life for people with disabilities.
As one participant said, “We have the same thoughts and feelings as everyone else.”
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