By Hallie Levine

[W]hen Katie, 36, was identified as having an intellectual disability as a young child after scoring below 70 on an IQ test, her parents were told that she would never learn to read and would spend her days in a sheltered workshop. Today she is a single mum to an 8-year-old son, drives a car, and works at a local restaurant as a waitress. She blasted through society’s expectations of her — including the expectation that she would never have sex.

Katie never had a formal sexual education: What she learned came straight from her legal guardian, Pam, who explained to her the importance of safe sex and waiting until she was ready. “I waited until I was 19, which is a lot later than some of my friends,” Katie says. Still, like many women with disabilities, she admits to being pressured into sex her first time, something she regrets. “I don’t think I was ready,” she says. “It actually was with someone who wasn’t my boyfriend. He was cute, and he wanted to have sex, so I said I wanted it, but at the last minute I changed my mind and it happened anyway. I just felt really stupid and uncomfortable afterwards.” She never told her boyfriend what happened.

Katie’s experience is certainly not unique: In the general population, one out of six women has survived a rape or attempted rape, according to statistics from RAINN. But for women with intellectual disabilities (ID), it’s even more sobering: About 25% of females with ID referred for birth control had a history of sexual violence, while other research suggests that almost half of people with ID will experience at least 10 sexually abusive incidents in their lifetime, according to The Arc, an advocacy organisation for people with intellectual disabilities.

When it comes to their sex lives, research shows many women with intellectual disability don’t associate sex with pleasure, and tend to play a passive role, more directed to “pleasuring the penis of their sex partner” than their own enjoyment, according to a 2015 study published in the Journal of Sex Research. They’re more likely to experience feelings of depression and guilt after sex. They’re at a greater risk for early sexual activity and early pregnancy. They’re also more likely to get an STD: 26% of cognitively impaired female high schoolers report having one, compared to 10% of their typical peers, according to a study published in the Journal of Adolescent Health.

Katie, for example, contracted herpes in her early 20s, from having sex with another man (she says none of her partners have had an intellectual disability). “I was hurt and itching down there, so I went to the doctor, who told me I had this bad disease,” she recalls. She was so upset she confronted her partner: “I went to his office crying, but he denied everything,” she remembers.

Given all of this, you’d think public schools — which are in charge of educating kids with intellectual disability — would be making sure it’s part of every child’s curriculum. But paradoxically, kids with ID are often excluded from sexual education classes, including STD and pregnancy prevention. “People with intellectual disabilities don’t get sexual education,” says Julie Ann Petty, a safety and sexual violence educator at the University of Arkansas. Petty, who has cerebral palsy herself, has worked extensively with adults who have intellectual disabilities (while not all people living with cerebral palsy have intellectual disabilities, they face many of the same barriers to sexual education). “This [lack of education] is due to the central norms we still have when thinking about people with ID: They need to be protected; they are not sexual beings; they don’t need any sex-related information. Disability rights advocates have worked hard over the last 20-some years to get rid of those stereotypes, but they are still out there.

“I work with adults with disabilities all the time, and the attitudes of the caretakers and staff around them are, ‘Oh, our people do not do that stuff. Our people do not think about sex,’” Petty says. “It’s tragic, and really sets this vulnerable population up for abuse: if they don’t have knowledge about their private body parts, for example, how are they going to know if someone is doing something inappropriate?”

Historically, individuals with intellectual disabilities were marginalised, shunted off to institutions, and forcibly sterilised. 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. But while significant progress has been made over the last 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 is 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, VAWA Project Coordinator, Disability Rights Wisconsin. “But research shows that actually the opposite is true.”

Indeed, as the mother of a young girl with Down syndrome, I’m personally struck by how asexualised 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 realised 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.

Ironically, sometimes the biggest barrier comes from parents of people with ID — which hits close to home for me. “A lot of parents still treat their kids’ sexuality as taboo,” says Malin. She recalls one situation where a mom in one of her parent support groups got attacked by other parents: “She was very open about masturbation with her adolescent son, and actually left a pail on his doorknob so he could masturbate in a sock and then put it in the pail — she’d wash it with no questions asked. I applauded it: I thought it was an excellent way to give her son some freedom and choice around his sexuality. But it made the other parents incredibly uncomfortable.”

Sometimes, parents are simply not comfortable talking about sexuality, because they don’t know how to start the conversation, adds Malin. Several studies have also found that both staff and family generally encourage friendship, not sexual relationships. “It’s a lot of denial: The parents don’t want to admit that their children are maturing emotionally and developing adult feelings,” says Malin. An Australian study published in the journal Sexuality & Disability found that couples with intellectual disability were simply never left alone, and thus never allowed to engage in sexual behaviour.

I’m doing my best — but despite all my good intentions, it’s certainly not been easy. This fall, I sat down to tell my three small children about the birds and the bees. My two boys — in second grade and kindergarten — got into the conversation right away, and as we began talking I realised it wasn’t a surprise to them; at a young age, they’d already picked up some of the basic facts from playmates. But my daughter, my eldest, was a whole different story. Jo Jo is in third grade and has Down syndrome, so she’s delayed, both with language and cognition. And because of her ID, and all the risk that goes along with it, she was the kid I was most worried about. So it was disheartening to see her complete lack of interest in the conversation, wandering off to her iPad or turning on the radio. Every time I would try to coax her back to our little group, she would shout, “No!”

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 than men being sexually aggressive. “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 her: “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 counsellors. “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 counsellors take her behaviour 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 counsellors 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 analysed 20 articles on sexual education programs aimed at this group and found most fell far short, mainly because people who unable to generalise 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.”

In the meantime, for parents like me, McLaughlin has a few tips. “Take advantage of teachable moments,” she says. “If a family member is pregnant, talk about it with them. If you’re watching a TV show together and there’s sexual content, don’t just sweep it under the rug — try to break down the issues with them.” It’s also important to be as concrete as possible: “Since people with ID have trouble generalising, use anatomically correct dolls or photographs whenever possible, especially when describing body parts,” she says.

Some local disability organisations also offer workshops for both teenagers and adults with intellectual disabilities. And the Special Olympics offers protective behaviours training for volunteers. But at this point there’s a dearth of legislation and organisations that are fighting for better sexual education, which means parents like myself have to take the initiative when it comes to educating our kids about their burgeoning sexuality.

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 one hundred percent 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.”

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