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

Archive for the ‘Sexuality’ Category

Let’s Talk About Sex– An Expert Perspective

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


Upcoming Expert Perspective on Disability and Sexuality

This blog is intended to be a collaborative effort and to that end the next post will be a follow up about issues at the intersection of disability and sexuality. The post will be written by Bethany Stevens, JD, MA.

The idea behind the creation of the blog is that some of the content will  be reflections offered by Plato’s Sister and from time to time those posts will be supplemented by the writing of experts who will offer siblings resources to navigate the too oftern uncharted waters of adult relationships with siblings with disabilities.

If you are curious to know more about Ms. Stevens you can check out her bio on the web site of the Center for Leadership in Disability.Ms. Stevens is the 2011  recipient of the Irving Zola Award for Emerging Scholarship from the Society for Disability Studies.

We are excited to share Bethany’s reflections in this space and also excited to join the conversation her writing will generate.

Let’s Talk About Sex

“Let’s talk about sex, baby. Let’s talk about all the good things and the bad things that may be.” These lyrics by the legendary rap group, Salt –n-Pepa, say it all. Our brothers and sisters with developmental disabilities are adults and engage in adult activities. So, how do we handle this or help them make informed decisions? Well, I do not claim to have the answer to this question but I will share with you how our family handled this situation when it was presented.

When Plato was around 21, he became friends with a young, single mother with two children.  She would often call Plato to come over to her house to baby sit her children, take her to the grocery store, help take the children to the doctor’s office, etc. Well, one day she called him over to her house and when she answered the door. The kids were gone and she came to the door without any clothes on. My brother did not know what to make of this. So, he leaves her standing there naked and heads home. When he gets home he come in the house and asks us, “Why Susan would answer the door without clothes on? What logical reason would lead her to do that? “ We laughed a little under our breath and told him that,” Susan probably wanted to take their relationship to the next level and her answering the door that way was probably her way of seducing him.” We explained to him how to use a condom, to always let the woman make the first move, and to always stop when the woman said “no” or “stop”.

We never knew if Susan gave him a second chance but they remained good friend to this day. Susan moved to the state of Washington but her children, now grown, often call Plato or come to visit him.  Well, so far we have not had to deal with Plato fathering any children or having any sexual transmitted diseases. We did have to deal with prostitutes offering him services but we told him that most women that do that have some type of sexually transmitted disease or that it was a waste of his money.  He has always been good at following directions and hates spending money so I doubt if he has engaged in that type of venture.

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.

Ok, now what about the adult siblings out there? Do you have any suggestions on how to handle this topic?


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