Sex Ed for People with Developmental Disabilities: "Nothing About Us Without Us"

By Katherine McLaughlin, MEd | September 4, 2018
Founder and Director of Training, Elevatus Training

I remember the day Karen Topper asked me the question. “Can we create a sexuality education curriculum where people with developmental disabilities are the teachers? Can we have them be actively involved in creating this curriculum?”

Karen is Executive Director of Green Mountain Self Advocates (GMSA) in Vermont. GMSA supports people with developmental disabilities to act as advocates for themselves, take control of their own lives, and educate their peers. Her question startled me and pushed my thinking. My original ideas were that I, along with other professionals, would create a curriculum. We would be the teachers, and people with disabilities would be the students.

And then, I started to imagine. And now, I ask you to imagine…

Imagine This

Can you imagine a sexuality education class for people with developmental disabilities where the teachers are people with disabilities?

Can you imagine if we had people with disabilities actively involved in creating materials and classes? If we truly encompassed the idea, “Nothing about us without us”?

Can you imagine people with developmental disabilities seeing themselves as part of the solution and valued for their contributions?

If this were our approach, what kind of impact would that have on the sexual health of people with developmental disabilities?

We Did This!

As a sexuality educator and trainer, I have had the pleasure of partnering with Green Mountain Self Advocates. We created a sexuality education curriculum that is designed to be team taught by people with developmental disabilities and professionals. That was when I learned two important lessons.

One was that people with disabilities could actually be part of the solution, not just the receivers of sexuality education.

The second lesson was that we really could apply the principle, “Nothing about us without us.” We used this framework in creating the curriculum. People with disabilities reviewed the materials, offered feedback, and then helped us field test, working in teaching teams where they were paired with a professional.

I also learned more about self-advocacy and sexual self-advocacy. Here are GMSA’s definitions:

• Self-advocacy is speaking up for yourself, solving your problems, and making your own decisions.
• Sexual self-advocacy is speaking up for yourself sexually, getting information, taking a stand, saying to whomever, “This is my choice.” It’s stating your sexual limits and desires with your partner. It’s also respecting your partner’s limits and desires, and making your own choices about your relationships.

Negative Messages for People with Disabilities

Many people with disabilities have told me that it is easier to be a self-advocate than a sexual self-advocate. When they ask about getting a job or living on their own, everyone works hard to help them achieve their goals. When they talk about wanting a relationship or starting to date, there is silence. They can feel the discomfort. This silence and discomfort come from beliefs that many people have about people with developmental disabilities and their sexuality.

Self-advocates—people with developmental disabilities who are taking control of their own lives—say they get the same negative messages about sexuality that everyone in our culture gets. But then they get even more. The messages they get come from many sources.

One self-advocate spoke about being in a mainstream health class in high school, studying nutrition and exercise and safety with everyone else—and then being removed from the class during the sexuality unit. This was five years ago, not the 1940s! The message people with disabilities hear loud and clear is, “You are not sexual.”

Paradoxically, another message they receive is, “You are oversexed.” There’s more to this message. “You can’t handle this subject. It will give you ideas. You won’t be able to control yourself.”

Many parents and professionals believe that people with disabilities will always be children. I’ve often heard someone say, “Yes, they may be 18, but they have a cognitive age of 5.”

All of these messages lead to one immensely damaging and incorrect belief: “You don’t need this information.” This leaves people with developmental disabilities at risk for all kinds of negative consequences, including sexual abuse and loneliness.

Turning It Around

How do we change this scenario? How do we see people with disabilities as sexual beings who deserve and want sexuality education? And how do we help others—colleagues, teachers, non-disabled peers, community-based professionals—change their understanding as well?

Here are some steps that have been useful for me and those I have trained.

1. Develop a solution mindset. Remember this idea of, “Nothing about us without us.” Ask people with disabilities to be part of your work. Recognize them as part of the solution and value their contributions.
2. Explore your own beliefs. How do you regard people with disabilities? Do you see them as childlike? Do you think of them as asexual, or perhaps oversexed? Where did these ideas come from? How do they show up in your choices about language? Make the effort to frame your own thoughts, as well as messages to others, in positive ways: “You have the right to be in a relationship.”
3. Pay attention to biology. When thinking about whether someone with a developmental disability needs sexuality education and what topics to teach, base the content on their biological age and not their cognitive age. Yes, how you teach will be different. But what you teach needs to be age-appropriate no matter who your students are.
4. Teach sexual self-advocacy. Our work as sexuality educators tells us that all people need to advocate for themselves in a relationship. But often, we don’t think about the fact that some people in our culture have to advocate for the right to even be in a relationship, or be seen as a sexual being. Or have access to sexuality education. Or be entitled to make mistakes in relationships and learn from this just as others do. Or expect privacy and self-determination in their lives.

Sexual self-advocacy is a powerful concept for all students. Let’s make sure we include all students when we teach these principles.

5. See our commonalities. I was presenting a training to staff at an agency that did work with people with developmental disabilities. I asked some of the self-advocates to sit in a circle and talk with one another about the messages they received about sexuality and relationships, and to describe the things they wanted in a relationship.

Afterwards, a staff person approached me. She said, “When I sat down to listen to the voices of people with developmental disabilities, I found myself doing what I do when I go to a foreign country. I think, ‘These people are going to be so different from me. I have to prepare myself for that.’ Then, once I am in the foreign country, I realize, ‘These people are just like me.’ That is what happened today. I started out thinking people with developmental disabilities are very different from me, but once I started to listen, I realized, they are just like me.”

What do you want out of your own life and relationships? People with developmental disabilities share many of these same wishes and goals.

Imagine the Impact

What if we were all able to do these things—engage with people with developmental disabilities, enlist them in sexuality education efforts, and support them in becoming sexual self-advocates? What kind of impact would this have on their sexual health?

Here’s what I can imagine. We would see people with developmental disabilities:

• In positive, enriching friendships and relationships
• Feeling valued and part of the solution
• Experiencing less sexual abuse and loneliness, and fewer unplanned pregnancies and sexually transmitted infections
• Acting as sexual self-advocates, and not just self-advocates
• Seeking and living full lives, just like everyone else

Can you imagine?

 

Katherine McLaughlin, MEd, is a certified sexuality educator and the founder of Elevatus Training, LLC. She is also the author of Sexuality Education for People with Developmental Disabilities, now available through ETR’s catalog. She can be reached at kath@elevatustraining.com.