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The Vulnerable Group Sex Ed Completely Ignores — & Why That’s So Dangerous

Historically, individuals with intellectual disabilities were marginalized, shunted off to institutions, and forcibly sterilized. That all began to change in the 1950s and 1960s, with the push by parents and civil rights advocates to keep kids with ID at home and mainstream them into regular education environments. The passage of the IDEA act in 1975 ensured that children with disabilities received a free and appropriate public education. But while significant progress has been made over the past half century in terms of increased educational and employment opportunities, when it comes to sex ed, disability rights advocates say we’re still far, far behind. “What I find shocking is I’ll go in to teach a workshop on human sexuality to a group of teenagers or young adults with cognitive disabilities, and I find that their knowledge is no different than what [young people with ID would have known] back in the 1970s,” says Katherine McLaughlin, who has worked as a sexuality educator and trainer for Planned Parenthood of Northern New England for over 20 years and is the co-author of the curriculum guide "Sexuality Education for Adults with Developmental Disabilities.” “They tell me they were taken out of their mainstream health classes in junior high and high school during the sexual education part, because their teachers don’t think they need it. I’ve worked with adults in their 50s who have no idea how babies are made. It’s mind-blowing.” “There’s this belief that they don’t need it, or that they won’t understand it, or it will actually make them more likely to be sexually active or act inappropriately,” adds Pam Malin, statewide developmental disabilities coordinator for the Wisconsin Coalition Against Sexual Assault (WCASA). “But research shows that actually the opposite is true.”Some in the legal community have questioned whether people with ID have the capacity to make decisions about sexual activity and provide consent — but, as law professor Eugene Volokh points out in an op-ed in The Washington Post, "If we say that it’s a crime to have sex with the mentally ill or disabled, because they lack the legal capacity to consent, that consigns them to a sexless and often therefore emotionally diminished life (or at least limits their pool of prospective sexual partners to those who are willing to commit serious felonies)." In fact, advocates say that even suggesting people with ID aren't able to choose to be sexually active is offensive, and misses the point — that adults should be able to live like adults, regardless of disability status.Indeed, as the mother of a young girl with Down syndrome, I’m personally struck by how asexualized people with intellectual disabilities still are. Case in point: When fashion model Madeline Stuart — who has Down syndrome — posted pictures of herself online in a bikini, the Internet exploded with commentary, some positive, some negative. “I think it is time people realized that people with Down syndrome can be sexy and beautiful and should be celebrated,” Madeline’s mother, Roseanne, told ABC News. Yet somehow, it’s still scandalous.

Because of her ID, and all the risk that goes along with it, she was the kid I was most worried about.

Lisa Shevin, whose 30-year-old daughter, Chani, has Down syndrome, says she’s never had a heart-to-heart with her daughter about sexuality. “The problem is, Chani’s not very verbal, so I’m never quite sure what she grasps,” says Shevin, who lives in Oak Park, a suburb of Detroit. While Chani has a “beau” at work, another young man who also has an intellectual disability, “They’re never, ever left alone, so they never have an opportunity to follow through on anything,” says Shevin. “I feel so frustrated as her mother, because I want to talk to her about sex ed, but I just don’t know how. I’ve never gotten any guidance from anyone. But just because my daughter is cognitively impaired, it doesn’t mean she doesn’t have the same hormones as any other woman her age. You can’t just sweep it under the rug and assume she doesn’t understand.”In one interesting twist, sex educators say they tend to see more women with intellectual disability being sexually aggressive than men with ID. “I worked with a young woman in her late 20s who would develop crushes on attractive male staff members at her group home,” recalls Malin. “She would try to flirt, and the guys would play it off as ‘hah hah funny,’ but eventually she called police and accused one of them of rape.” While the police investigated and eventually dropped charges, Malin was brought in to work with the woman: “We had a long conversation about where this had come from, and she kept talking about Beau and Hope from Days of Our Lives,” Malin recalls. “It turned out she had gotten so assertive with one of the male staff that he’d very adamantly said no to her, but her understanding of rape boiled down to gleaning bits from soap operas, and she thought that if a man in any situation acted forcefully with a woman then it was sexual assault.”While most cases don’t escalate to this point, sometimes people with intellectual disability can exhibit behavior that causes problems: Chani, for example, was kicked out of sleep-away camp a few years ago after staff complained that she was hugging too many of her male counselors. “She’d develop little crushes on them, and she never tried anything further than putting her arms around them and wanting to hang out with them all the time, but it made staff uncomfortable,” Shevin recalls. Chani’s since found a new camp where counselors take her behavior in stride: “They’ve found a way to work with it, so if she doesn’t want to do an activity, they’ll convince her by telling her afterwards she can spend time with Noah, one of the male counselors she has a crush on,” says Shevin. (At the end of the summer, Noah gave Chani a tiara, which remains one of her prize possessions.) So what can be done? Sadly, even if someone with ID is able to get into a sexual education program, the existing options tend to severely miss the mark: A 2015 study published in the Journal for Sex Research analyzed 20 articles on sexual education programs aimed at this group and found that most fell far short, mainly because people were unable to generalize what they learned in the program to an outside setting. “This is a major problem for individuals who are cognitively challenged: They have difficulty applying a skill or knowledge they get in one setting to somewhere else,” explains McLaughlin. “But just like everywhere else, most get it eventually — it just takes a lot of time, repetition, and patience.”Some local disability organizations also offer workshops for both teenagers and adults with intellectual disabilities. And the Special Olympics offers protective behaviors training for volunteers. But at this point, there’s a dearth of legislation and organizations that are fighting for better sexual education, which means parents like me have to take the initiative when it comes to educating our kids about their burgeoning sexualities.It’s a responsibility I’m taking to heart in my own life. Now, every night when I bathe my daughter, we make a game of identifying body parts, some of which are private, and I explain to her that no one touches those areas except for mommy or a doctor. Recently, she’s started humping objects at home, like the arm of the sofa, and I’ve begun explaining to her that if she wants to do something like that, it needs to be in the privacy of her own room. It’s taken a lot of repeating and reinforcing, but she seems to be getting the message. I have no doubt that — like every other skill she’s mastered, such as reading or writing her name or potty training — it will take time, but she’ll get there.As for Katie, with age and experience, she’s become more comfortable with her sexuality. “It took me a while, but I’m confident in myself,” she says. “I am 100% okay saying no to someone — if I’m pressured, there’s no way in the world now I’ll do anything with anybody. But that means when it does happen, it feels right.”

The gap between what we learned in sex ed and what we're learning through sexual experience is big — way too big. So we're helping to connect those dots by talking about the realities of sex, from how it's done to how to make sure it's consensual, safe, healthy, and pleasurable all at once. Check out more here.

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