Nothing About Us Without Us

Including people with disabilities as part of the solution

I remember the day Karen Topper, Executive Director of Green Mountain Self Advocates, asked, “can we create a sexuality education curriculum where people with developmental disabilities are teachers and are actively involved in creating this educational tool?” This startling statement pushed my thinking. My usual thoughts were that I and other professionals would create a curriculum and we would be the teachers, not people with disabilities.

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

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

Can you imagine if all of our work encompassed, “nothing about us without us” and we had people with disabilities actively involved in creating materials and classes?

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

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

As a sexuality educator and trainer I have had the pleasure of partnering with Green Mountain Self Advocates (GMSA) in Vermont. 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 be seen as part of the solution and not just the receivers of sexuality education. The second lesson was a statement that the self-advocacy movement has taught us, “nothing about us without us.” This influenced our approach in creating the curriculum and people with disabilities reviewed the curriculum and then, field tested it as one of the teachers.

Along with these two lessons, I also learned 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, stating your sexual limits and desires with your partner-respecting your partner’s limits and desires, starting to do what you want with relationships.

Many people with disabilities state that it is easier to be a self-advocate than a sexual self-advocate. They say that when they ask about getting a job or living on their own, everyone works hard to help them achieve their goals. When they say they want a relationship or to start dating, there is silence and they can feel the discomfort. This silence and discomfort comes from beliefs that many people have about people with developmental disabilities and sexuality.

Self-advocates say they get the usual negative messages that exist in our culture, but then, they also get even more. The messages they get come from many sources. One self-advocate spoke about being in the mainstream health class and being removed from the class during the sexuality unit. This was five years ago, not the 1940s. The message they hear loud and clear is “you are not sexual.”

Another messages people with developmental disabilities receive is that “you are oversexed.” They can’t handle the information, it will give them ideas, and they won’t be able to control themselves. Many parents and professionals believe that people with disabilities will always be children. You may even hear, “yes, they may be 18, but they have a cognitive age of 5.”

All of these messages lead to one belief, “you don’t need this information.” This leaves them at risk for many negative consequences including sexual abuse and loneliness.

How do we change this scenario and see people with disabilities as sexual beings who deserve and want sexuality education?

  1. Consider this idea of “nothing about us without us” and asking people with disabilities to be part of our work. See them as part of the solution and value their contribution.
  1. Explore your own beliefs regarding people with disabilities. Do you see them as children? Asexual or oversexed? And why? Give positive messages instead such as “you have the right to be in a relationship.”
  1. When thinking about whether someone with a developmental disability needs sexuality education and what topics to teach, based the topics on their biological age and not their cognitive age. How you teach will be different, but not what you teach.
  1. Teach sexual self-advocacy. Our work as sexuality educators tells us that all people should advocate for themselves in a relationship, but we don’t ever think about the fact that some people in our culture, have to advocate for the right to even be in a relationship. For being seen as a sexual being. For access to sexuality education, for the right to make mistakes in relationships, for privacy in your life. So, not just advocating for yourself in a relationship, but also to actually be in a relationship.
  1. See them as the same as anyone. I was presenting a training to staff and had people with developmental disabilities get in a circle and talk with one another about the messages they received and what they want in a relationship. Afterwards, a staff person approached me and told me this story. She said, “when I sat down to listen to the voices of people with developmental disabilities, I did what I do when I go to a foreign country. I think, these people are going to be so different than me and I have to prepare myself for that. Then, once I am there, I realize, these people are just like me. That is what happened today. I thought, people with developmental disabilities are very different than me, but once I started to listen I realized, they are just like me.” Think about what you want out of life and remember that people with developmental disabilities are no different.

In closing, I ask what kind of impact this would have on the sexual health of people with developmental disabilities?

We would see people with developmental disabilities:

In positive, enriching friendships and relationships

Feeling valued and part of the solution

Experience less sexual abuse, loneliness, unplanned pregnancies, and sexually transmitted infections

As sexual self-advocates, and not just self-advocates

Living full lives, just like everyone else

 

Can you imagine?


Katherine McLaughlin, M.Ed., CSE and founder of Elevatus Training is a national expert and trains individuals, staff, and parents on sexuality and developmental disabilities. She teaches sexuality education to people with developmental disabilities and trains them to be peer sexuality educators. She is the author of an agency and school curriculum, “Sexuality Education for People with Developmental Disabilities.” She has developed two online courses: “Developmental Disability and Sexuality 101” for professionals and “Talking to Your Kids: Developmental Disabilities and Sexuality” for parents. She has spent her career trying to elevate the status of all people, which is why the name of her growing company is Elevatus Training. Contact Katherine at elevatustraining.com