Duchenne and Desire

The following is an excerpt by Dr. Amanda Appel from our podcast episode “Duchenne and Desire” with Physical Therapist Carolyn Kelley, PT, PCS and Dr. Amanda Appel, MD, MPH. Click here for the full podcast.

Duchenne and Desire

Do people with disabilities want to have sex?

I think the answer to that is a resounding yes. And just like the general population, not everybody’s interested in sex, and that’s okay. But a lot of people are, and I think we should be talking about that.

I think the important part about sexual health and reproductive health is really the education piece and the health care piece. I think those really provide the foundation for people to help them decide how to and when to express their sexuality, and then how to do it in a safe way – which is what we all want for everyone.

Duchenne, Sex, Stigma

I think the biggest stigma is just the infantilization of people with disabilities. Seeing them as childlike or not interested in having sex and unconcerned about not being able to have sex or reproduce.

I think these are all of these stigmas are a lot worse for people who have disabilities since childhood. It seems that people who are taken care of care by their parents for most of their life, are often seen a little bit more as childlike than people who acquire a disability later in life.

Another stigma is that people with disabilities can’t make their own decisions when it comes to sex and sexuality or that they’re not going to make good decisions when it comes to sex or sexuality. There’s also some stigma that people with disabilities are hyper-sexual and over-sexual. There are a lot of other types of stigma around sex and sexuality, and I think there’s a huge spectrum of stigma.

I think the important part is that none of it is true. People are having sex, people want to have sex. It’s important that we support people. And I think both Carolyn and I are very big on the fact that when we talk about these topics, we really want it to be empowering and optimistic.

Getting the Information

And I think parents are like the biggest advocates for their kids. And 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 about sex or to have your parents talk to you about sex. So come up with ways that make it a little bit more comfortable, that make it a conversation for years and years and years, instead of just sitting down one time and talking about “the birds and the bees.”

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.

Doctor’s visits are busy. If you take a person who has any type of medical complexity to clinic, there’s a lot of things that take precedence above talking about sex, right. 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 medical personnel are not addressing it because they don’t think it’s relevant.

And then friends and media also share information about sex. But those are other places that people are learning about sex that may be problematic in terms of appropriate sex education for people with disabilities and making sure that we’re staying safe.

Changing the Sex Narrative

It’s something that we as a society need to work on changing in terms of the way that we view people with disabilities.

I think if we are ignoring that as a medical community, or as a parent group, then we’re not holistically taking care of the people that we are raising or working with…

I think having this conversation right now is part of the change and continuing to talk to people about it. Talk to friends, family, doctors, and just let people know that your point of view is really important…