Self Advocates

Hello! I’m Pauline Bosma. I grew up in a small country town in Massachusetts. When I was young, I was considered a boy with slight mental retardation. In addition to a disability label, at the age of four, I also started to have questions about my gender. I did not know how to express these feelings, so I kept them hidden. When I got older, I continued to struggle to figure out who I was, and it was turmoil. Dressing as a man made me feel stressed, but if I was getting dressed up as a woman, I felt relaxed. I would go out to buy women’s clothes, and I would wear them in private, but then I would feel ashamed and throw them away. With time and support, I finally came to accept that this was a gift that God gave me: in my brain, I was feminine and a woman.

These webinars are part of a series that addresses self-advocate questions about relationships and sexuality. This series is a great learning opportunity for self-advocates, professionals, and paraprofessionals working with individuals with intellectual and developmental disabilities to better understand sexual health needs better.

One way to help people with intellectual and developmental disabilities (I/DD) lead sexually healthy lives is to provide sexuality education classes. Here at Elevatus, we believe the most effective way of doing this is by including self-advocates in the teaching team.

Being accepted for who you are and being in relationships has many benefits. Yet, people with developmental disabilities face barriers in achieving acceptance and building friendships and romantic sexual relationships that they desire because of restrictions, lack of control, and shameful, negative messages. The article, Restrictions, Power, Companionship, and Intimacy: A Metasynthesis of People with Intellectual Disability Speaking About Sex and Relationships, by Rhonda S. Black and Rebecca R. Kammes, explores the voices of people with intellectual and developmental disabilities (I/DD). 

Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. From these studies, two competing themes emerged: control and desire. People with I/DD have desires, and family, caretakers, and organizations tend to want control of those desires either because they don’t believe these desires exist or they want to protect individuals. These competing themes are what put people with I/DD at risk.

Members of Green Mountain Self-Advocates in Vermont held a discussion group about sexuality to share their thoughts and experiences. Here are their candid responses to a number of questions about the messages they received about sexuality over the years and why they think sexuality education is important. 

This is a record of the conversation as it occurred. In some places, they respond to one another, as well as to the questions. Their real names have not been used at their request.

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