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Sexuality with disabilities

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March 29, 2007

By MEGAN JAMES

MIDDLEBURY — There are a lot of things Randy Lizotte wishes he had known about sex before moving out of his parents’ house three years ago. The 26-year-old president of Speak Up Addison County, a self-advocacy group organized by area residents with developmental disabilities, said he was 20 years old when his father gave him “the talk.”

“My dad’s a man of few words, short and to the point,” he said. “It wasn’t scary, it was just kind of awkward that late in my life.”

Lizotte has developmental disabilities, but when he moved into an apartment in Middlebury, he was physically fully developed. It didn’t take him long to leap into his first serious romantic relationship.

Everything he knew about dating and his body, he had pieced together from things his friends told him. So he learned the basics on the fly and did the best he could. Now he wants to make sure others are more prepared than he was.

To that end, he and Speak Up are working with Middlebury’s Community Associates, a division of Counseling Services of Addison County (CSAC) that serves area residents with developmental disabilities, to hold a conference called “Celebrating Sexuality.” Also at the conference, which will be held on May 4 and 5 at the Killington Grand Hotel in Killington, will be a number of Vermont social service agencies.

The conference, open to adults with developmental disabilities, their parents and the agencies that serve them, will cover everything from body basics, to safe sex, to tips on Internet dating. One workshop will focus on flirting — what does it mean when someone winks at you? One will offer advice about talking to your parents about sex and another will explore gay and lesbian issues.

In the conference program, each workshop will be rated with chili peppers: one pepper denoting gentler topics, three for extra spicy. 

“We believe sex education and empowerment is a better path to safety than sheltering, fostering ignorance and preventing awareness,” said Jessica Lindert from Community Associates, who has spearheaded the planning committee.

Typically, two central myths have kept parents from talking about sex with their children with developmental disabilities. The first, is that people with disabilities are childlike and, therefore, considered asexual.

“If you spend time with people with developmental disabilities, you’ll find the same span of sexuality you would find in people without disabilities,” Lindert said. “That means, in some people, sex is not such a big deal, not something they think about all the time. But in others, it’s a really big deal, and something that they really want to think about, realize and incorporate into their lives.”

The other myth Lindert hopes the conference will dispel is that people with developmental disabilities, simply because of their disabilities, are more likely to commit or become victims of sexual abuse.

Programs specifically oriented for supporting people with problematic sexual behaviors are abundant, Lindert said, but it is important to address sexuality as a “healthy, normal, wonderful part of our existence,” so it is not simply isolated as a deviant behavior.

“It is true, when you look at statistics, that people with developmental disabilities are more at risk for being sexually victimized than somebody without a disability,” she said. “But part of our contention has been that you can’t disregard the lack of information, the lack of education as a potential risk factor in and of itself.”

Barbara Whipple, who also works for Community Associates and has a 23-year-old daughter, Ashley, with Down syndrome, noted that these myths are deeply engrained in society. Ashley was prom queen in high school, she has a job, she goes to Curves exercise classes and she has had a boyfriend.

But even her physician doesn’t address her sexuality, Whipple said.

“We’re not pushing people to be sexually active,” she said. “Not everybody has to have a partner. But people are sexual beings themselves.”

Many of the disabled people with whom Whipple works don’t know how to read. If there’s something they want to know about sex, or even about how their body is changing during puberty, they can’t just look it up in a book or on the Internet.

“I don’t want people to be shut out and treated like children when they are adults,” she said. “Everybody’s entitled to have their life, to be in love, to hold hands, to be able to make choices for themselves.”

With or without developmental disabilities, talking about sex is tough enough, and the conference has been designed with this in mind.

Speak Up member Barbara Hodgdon, who recently signed up to attend the conference, is looking forward to a workshop on talking to parents about sex.

“Every time I go out with guys my parents always get worried and they don’t trust me,” she said. “They think I’m going to have, you know, and I’m like, ‘Mom, no!’”

Hodgdon isn’t particularly interested in having sex, she said. She is 20 years old and knows she can’t engage in sexual activity because of the medication she takes for a chronic heart problem. But someday she wants to adopt a child and to find a healthy relationship.

Most of the Speak Up crew has already signed up for the conference, and a few of them are planning to run a workshop themselves. Lizotte, who used to shy away from the topic of sex, is excited to be at the helm of the conference.

“I wasn’t able to joke about sex until about a year and a half ago,” he said. “I used to be so serious about it. I’d get red anytime someone made a joke about it or said something sexual to me.”

But now Lizotte wants to talk about his own experiences and more importantly, to learn from everyone else’s, he said.

“No matter who you are, in some way, shape or manner, you are a sexual being,” he said. “We can learn from each other.”

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