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Self-Advocates Speak Up About Sex

compiled by Karen Topper and Katherine McLaughlin

Members of the Green Mountain Self-Advocates in Vermont recently held a discussion group about sexuality for the purpose of sharing their thoughts and experiences in this article. Below are their 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, and in some places they respond to one another, as well as to the questions. Their real names have not been used at their request.

Who first explained sex to you?


What were the messages you got about sex from adults when you were growing up?


Did you get any positive messages?


Did you get any positive messages, like you look really attractive, hot, you're sexy?


How did you feel about the messages you got?


Did you ever notice if the messages you got were different than the messages given to your sisters or brothers?

[A resounding yes! Even from people who had been quiet up until this time.]


When people talk to your brothers and sisters and not you, what message does that give?


What was the most important thing you learned about sex from adults when you were growing up?


What do you wish adults would've told you but didn't?


Why do you think people with disabilities need sexuality education?

Karen Topper is the State Coordinator for Green Mountain Self-Advocates, Montpelier, Vermont; she may be reached at Katherine McLaughlin is a consultant on sexuality and disability; she may be reached at 603/499-1735 or Karen and Katherine, along with Jessica Lindert, have co-authored a curriculum titled, "Sexuality Education for Adults with Developmental Disabilities" published by Green Mountain Self-Advocates and Planned Parenthood of Northern New England (PPNNE). For ordering information visit or call PPNNE at 800/488-9638.



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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota ( Citation: Fager, S., Hancox, D., Ely, C., Stenhjem, P., & Gaylord, V. (Eds.). (Spring/Summer 2010). Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). [Minneapolis: University of Minnesota, Institute on Community Integration].

The PDF version of this Impact, with photos and graphics, is also online at

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