The following is an excerpt by Dr. Amanda Appel from our podcast episode “Duchenne and Desire” with Carolyn Kelley, DPT, PCS and Dr. Amanda Appel, MD, MPH. Click here for the full podcast.
Inadequate Sexual Education for Individuals with Disabilities
Amanda: Where are people learning about sex, reproductive health and sexuality?
I think all the places that you traditionally see people learning about these things are: in school, from their parents, from their doctors, from their friends, and then from media – you know, online from porn, things like that…
I think – for parents, for doctors, for schools – part of the problem is that a lot of people with disabilities are seen as childlike or they’re infantilized. People just don’t think that people with disabilities are having sex. They think maybe they’re not interested, maybe they’re not able to, maybe they’re not fertile.
And these are all things that are not always the case. We shouldn’t be assuming.
So when we talk about education, people usually will have some type of sex ed in school.
It varies – based on the state and everything in terms of how much information they’re giving in these sex ed talks – but another part of the problem is, if you have kids/adolescents/young adults with disabilities who are on an IEP, they might be pulled out of class for this, and they might not be getting the sex ed in that way.
A lot of schools require parents to sign forms to allow their kids to get sex ed, and sometimes parents won’t sign those forms. So they’re not even getting sex education in school.
The second available sexual education resource is parents.
Parents are a really important source of information for their children – when it comes to anything, right? And I think parents are the biggest advocates for their kids. It’s important for them to be involved in any conversation, so I find this conversation to be extremely important.
When it comes to sex, it’s always uncomfortable to talk to your kids or to have your parents talk to you about sex. So come up with ways that make it a little bit more comfortable, make it a conversation for years and years and years, instead of just sitting down one time and talking about, like the birds and the bees, or however you want to say it.
I think, for parents, it’s also uncomfortable, because if sex for your kid doesn’t look the same way that sex looks for you, you might not feel comfortable talking to your kid about it or know how to talk to your kid about it. So I think that’s hard.
You mentioned that your friends saying, “my doctor talks to me about this”, but they never talked to you about it. Doctors just aren’t asking these questions as much in visits. And why is that?
I don’t think doctors are doing it on purpose. I think it’s just something that we as a society need to work on changing – in terms of the way that we view people with disabilities.
Also, doctor visits are busy. If you take a person who has any type of medical complexity, there’s a lot of things that take precedence over sex, right? So I think, unfortunately, visits are too short and people just don’t have time to address it the way that they want to. And sometimes people are not addressing it at all because they don’t think it’s relevant.
Friends and Media
And then, you know, friends and media – those are other places that people are learning about sex. But that may be problematic in terms of appropriate sex education for people with disabilities and making sure that they’re staying safe. Their needs may very well be different.