The following is an excerpt by Dr. Amanda Appel from our podcast episode “Duchenne and Desire” with Physical Therapist Carolyn Kelley, DPT, PCS and Dr. Amanda Appel, MD, MPH. Click here for the full podcast.
The Risk of Sexual Abuse
Dr. Appel: People with disabilities are at a much higher risk of sexual abuse, unfortunately, and it’s even higher for people with intellectual disabilities. It ranges in the literature that individuals with disabilities are anywhere from 2 to 10 times more likely to be sexually abused than the general population.
So, this is another area that it’s really important that family and caregivers are having these conversations with people with Duchenne and that people with Duchenne feel that they are able to communicate with someone about things that are going on with their bodies and whether or not they’re appropriate or inappropriate.
When individuals eventually do come out and tell people about the sexual abuse, a lot of people with disabilities say this: “It was like I wasn’t sure if it was inappropriate or not. It didn’t seem like it was appropriate at the time. It was someone I knew and I trusted. And it felt wrong, but I didn’t have any words to describe it” or “I wasn’t sure because it was someone I trusted and they told me it was OK.”
So just keep in mind when you’re talking to people with disabilities:
- where they’re at in their ability to be able to identify the abuse
- their ability to be able to describe it to people
- whether they have someone that they trust enough to be able to talk to about it
Inappropriate touch
– Dr. Amanda Appel
is anything
that makes you feel uncomfortable.
Meeting People
Dr. Appel: I think when we’re talking about the risk of abuse, it’s important to really be cognizant of where we’re meeting people and how we’re meeting people. The Internet is a really common place for people to meet anyone – friends, colleagues, sexual interests. Just make sure that we have conversations about safe ways to talk to people online. Make sure that who we’re talking to is actually who we’re talking to and that it’s someone who has good intentions for us as a person.
Ryan Russell: Right. And if you’re going to meet somebody in public that you’ve never seen or met physically, have somebody with you because you don’t know, people make things up all the time. And everybody has to be careful of the catfish, too.
Inappropriate Touch
Dr. Appel: when you’re talking with your young teens, adolescents, I think the other thing that’s really important for parents to talk about is what’s appropriate touch and what’s inappropriate touch. And I think it’s important to start from a very young age.
Very early on, when you’re changing a diaper, it’s OK to say “it’s OK that I’m doing this because I’m your mom or I’m your dad or I’m your parent.” Or when you’re at the doctor’s office. “This is OK because this is a doctor and I’m present, and that’s why it’s OK right now. But it’s not OK for other people to be doing that.”
If someone’s going to require help with any hygiene or changing in the school setting or in a day program setting, or from a paid caregiver, the same thing goes. Make sure that people know exactly what is appropriate and what is inappropriate. Usually I think a big line to draw is that inappropriate touch is anything that makes you feel uncomfortable. Anything that makes you feel just wrong, off, or it doesn’t sit right with you.
I think that the second big piece is empowering people to say no to what does not feel comfortable to them. So parents, have early conversations, have frequent conversations and reiterate what’s appropriate and what’s inappropriate.
The American Academy of Pediatrics has actually has some really good guidelines to talking to kids and young adults about inappropriate touch. I feel like they apply in a lot of different settings, so I feel like that’s a good resource to go look at if you’re thinking, “how do I have this conversation with my kid?”
Sometimes when you’re talking about masterbation, there can be questions about when is it appropriate, or when is it inappropriate? And so talking about what is private and what is public and where things are appropriate to do them – like at home in your bedroom or bathroom where it’s just you and other people aren’t around versus school, which would be an inappropriate place.These are things that people are thinking about and people are wanting to do and we just want to make sure that they are set up for success.
These are things that people are thinking about and people are wanting to do and we just want to make sure that they are set up for success.
More To Consider…