Making connections with adult siblings of people with disabilities and the people who love them

Regina’s blog post about her family addressing the sexual expression of her brother Plato provides a useful point to begin a conversation about developmental disability and sexuality. Her post really begs the question: have you or your family members had a conversation with your family member with a developmental disability about sexuality? If not, why not?

I offer a few reasons why most people in the United States, along with other many cultures, experience barriers in talking about sexuality, particularly when addressing the desires/needs of people with disabilities. Additionally, I offer some tools to help build the bridge to having a necessary conversation around sexuality.

Balancing Sexual Messages

Regina starts the blog with the sexcellent quote from Salt N Pepa’s Let’s Talk about Sex – “let’s talk about all the good things and the bad things that may be.” As a sexual health scholar, this line is a revolution in talking about sexuality because it provides a catalyst to talk all the GOOD and the BAD about sexuality – the harmful and the pleasurable. In a culture so saturated with sex negative images of people being ravaged with no discussion about safer sex practices, it is nice to find some balance to these images with discussion about some of the good aspects of sexuality and how to be protected to fully enjoy the experience(s).

In 2001, the 16 Surgeon General of the United States Dr. David Satcher wrote the Call to Action to Promote Sexual Health and Sexually Responsible Behavior to promote conversations throughout the nation about sexual health. He believes conversation in various community and familial spaces is key to promoting sexual health and eliminating health disparities. In the report, Dr. Satcher addresses the disability community by stating: “There are also persons who are challenged with developmental, physical or mental disabilities whose sexuality and sexual needs have often been ignored, or at worst, exploited and abused… Although appropriate assistance has been developed for these vulnerable populations, it is seriously underutilized…Additional materials and programs, as well as further research, are needed.”

Disability & Sexuality

Dr. Satcher touches upon some of the key problems for people with disabilities and sexuality – we are often overly represented in populations experiencing sexual abuse, exploitation and hate crimes. It therefore seems often easier for people who are interested in the well-being of people with disabilities to protect us or keep us away from sexuality. In some cases this idea of protection takes the form of compulsory sterilization, as Regina touched in at the close of her blog post when she wrote: “At one time in this nation’s history certain states sterilized people with developmental disabilities. This action was wrong and robbed many individuals of their reproductive rights.” Certainly true that this practice robs people of their sexual and reproductive rights, it is not sure that these practices have stopped as many scholars contend.

The sterilization of people with disabilities is still constitutional under the United States Supreme Court opinion Buck v. Bell (1927). People with disabilities continue to be sterilized throughout the nation, with the most recent case making national news in the US being the Ashley X case.  Her parents stated they had her breast buds and uterus removed, along with being placed on high levels of estrogen so that she could be kept small and easy to care for, along with being protected  from sexual violence. Factually this is incorrect, as sterilization may ward off unintended pregnancies but CANNOT protect anyone from sexual violence or STDs, including HIV and AIDs.

My post seems to be leading you to the same place you came here with: fear, questions and without a clear path for supporting sexual health for people with disabilities. Below I offer you 6 steps to work on having healthy meaningful conversations about sexuality with your family member with a disability. Simple Googling can answer the question affirmatively: a disability does NOT preclude sexuality – so it is important to be prepared to address this issue when it arises.

Tips to Talk about Sexuality

Step 1: Start by congratulating yourself for getting this, for seeking information and wanting to move forward positively! That is a great start.

Step 2: prepare a bit for some areas that you may be asked about, like anatomy, developmental stages to give information and how to stay calm when delivering information that we have ALL been socialized to be afraid or ashamed to talk about. Some great starting books to learn about sexuality, with disability components, include:

1)      Teaching Children with Down Syndrome about Their Bodies, Boundaries,  and Sexuality

2)      Words Can Work: When Talking with Kids about Sexual Health

3)      Guide to Getting it On

4)      Our Bodies, Ourselves

I have used all of these books in teaching parents of people with disabilities, people with disabilities, and college students (of different abilities) about sexuality. They include little vignettes or stories to help ground the methods in exchanges between people – to model behavior. Those vignettes serves as a great models for role-playing with friends or loved ones, if you feel you need practice before talking to your family member with a disability about sexuality.

Step 3: Consider role-playing or going through a possible conversation that might come up with a family member. Practice using proper medical terms for autonomy so you teach your family members how to properly identify their body parts. Role-playing how to talk about sexuality can be very useful. This is true because you can work out any giggles you might have; you can deal with a “curve ball question” and deal with your reaction without shaming your family member. And it helps your friends or loved ones learn how to talk about sex too!

Step 4: Have a conversation with your family member about sexuality. Ask if they have questions, if they want to talk about any feelings they have about their bodies, relationships, etc.

Step 5: Understand you may not have THE answer to every question. Just admit that you need to look it up and use it as a learning period for both you and your family member. A good teacher knows that s/he does not know all the answers!

Step 6: Keep practicing and keep the door open to other conversations. You can do this simply by saying “if you ever have any questions, you know you can come to your sister, brother or I to talk. We have all had questions, it’s normal and natural. I’m here when you need me.”

Can you see how conversations can spread and help others? Dr. Satcher is right, if we start with conversation – the changes we can make in health and quality of lives for all Americans is priceless.

If you have further questions, please do not hesitate to email me (Bethany Stevens) at bstevens@gsu.edu.

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