Category Archives: Disability

Why Sex Education for Disabled People Is So Important

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“Just because a person has a disability does not mean they don’t still have the same hormones and sexual desires as other individuals.”

 

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“Sex and disability, disability and sex; the two words may seem incompatible,” Michael A. Rembis wrote in his 2009 paper on the social model of disabled sexuality. Though roughly 15% of adults around the world (that’s nearly one billion people), and over 20 million adults in the U.S. between the ages of 18 and 64 have a disability, when it comes to disability and sex, there’s a disconnect. People with disabilities often have rich and satisfying sex lives. So why are they frequently treated as though they are incapable of having sexual needs and desires, and are excluded from sexual health education curriculum?

According to Kehau Gunderson, the lead trainer and senior health educator at Health Connected, a non-profit organization dedicated to providing comprehensive sexual health education programs throughout the state of California, the sexual health and safety of students with disabilities is often not prioritized because educators are more focused on other aspects of the students’ well-being. “Educators are thinking more about these students’ physical needs. They don’t see them as being sexual people with sexual needs and desires. They don’t see them as wanting relationships,” Gunderson told me when I met her and the rest of the Health Connected team at their office in Redwood City, California.

When I asked why students with disabilities have historically been excluded from sexual education, Jennifer Rogers, who also works as a health education specialist at Health Connected, chimed in. “In general, the topic of sex is something that is challenging for a lot of people to talk about. I think that aspect compounded with someone with specialized learning needs can be even more challenging if you’re not a teacher who’s really comfortable delivering this kind of material,” she said.

But it was the third health education specialist I spoke with, DeAnna Quan, who really hit the nail on the head: “I think sometimes it also has to do with not having the materials and having trouble adapting the materials as well. While people often just don’t see disabled people as being sexual beings, they are. And this is a population who really needs this information.”

The complete lack of sexual education in many schools for students with disabilities is particularly alarming given the fact that individuals with disabilities are at a much higher risk of sexual assault and abuse. In fact, children with disabilities are up to four times more likely to face abuse and women with disabilities are nearly 40% more likely to face abuse in adulthood. Yet students in special education classes are often denied the option to participate in sex education at all. When these students are included in mainstream health courses, the curriculum is often inaccessible.

Disability activist Anne Finger wrote, “Sexuality is often the source of our deepest pain. It’s easier for us to talk about and formulate strategies for changing discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction.” But as Robert McRuer wrote in Disabling Sex: Notes for a Crip Theory of Sexuality, “What if disability were sexy? And what if disabled people were understood to be both subjects and objects of a multiplicity of erotic desires and practices, both within and outside the parameters of heteronormative sexuality?”

When it comes to disability and sexuality, a large part of the issue lies in the fact that disabled people are so infrequently included in the decisions made about their bodies, their education, and their care. So what do people with disabilities wish they had learned in sex ed? This is what students and adults with disabilities said about their experience in sexual health courses and what they wish they had learned.

People with disabilities are not automatically asexual.

“The idea of people with disabilities as asexual beings who have no need for love, sex, or romantic relationships is ridiculous. However, it is one that has a stronghold in most people’s minds,” wrote disability activist Nidhi Goyal in her article, “Why Should Disability Spell the End of Romance?” That may be because disabled people are often seen as being innocent and childlike, one disabled activist said.

“As a society, we don’t talk about sex enough from a pleasure-based perspective. So much is focused on fertility and reproduction — and that’s not always something abled people think disabled people should or can do. We’re infantilized, stripped of our sexuality, and presumed to be non-sexual beings. Plenty of us are asexual, but plenty of us are very sexual as well, like me. Like anyone of any ability, we hit every spot on the spectrum from straight to gay, cis to trans, sexual to asexual, romantic to aromantic, and more.” Kirsten Schultz, a 29-year-old disabled, genderqueer, and pansexual health activist, sexuality educator, and writer, said via email.

Kirsten, who due to numerous chronic illnesses has lived with disability since she was five years old, was not exposed to information regarding her sexual health and bodily autonomy. “I dealt with sexual abuse from another child right after I fell ill, and this continued for years. I bring this up because my mother didn’t share a lot of sex ed stuff with me at home because of illness. This infantilization is not uncommon in the disability world, especially for kids,” she said.

Growing up in Oregon, Kirsten said she was homeschooled until the age of 13 and didn’t begin seeing medical professionals regularly until she turned 21. “This means all sexual education I learned until 13 was on my own, and from 13 to 21, it was all stuff I either sought out or was taught in school.” Schultz explained. But even what she learned about sex in school was limited. “School-based education, even in the liberal state of Oregon, where I grew up, was focused on sharing the potential negatives of sex — STIs, pregnancy, etc. Almost none of it was pleasure-based and it wasn’t accessible. Up until I was in college, the few positions I tried were all things I had seen in porn…AKA they weren’t comfortable or effective for me,” she added.

Internet safety matters, too.

While many disabled people are infantilized, others are often oversexualized. K Wheeler, a 21-year-old senior at the University of Washington, was only 12 the first time their photos were stolen off of the Internet and posted on websites fetishizing amputees. K, who was born with congenital amputation and identifies as demisexual, panromantic, and disabled, thinks this is something students with disabilities need to know about. “There’s a whole side of the Internet where people will seek out people with disabilities, friend them on Facebook, steal their photos, and use them on websites,” she said.

These groups of people who fetishize amputees are known as “amputee devotees.” K had heard of this fetish thanks to prior education from her mother, but not everyone knows how to keep themselves safe on the Internet. “This is something that people with disabilities need to know, that a person without a disability might not think of, ” K said.

K also believes more general Internet privacy information should also be discussed in sex ed courses. “In the technological age that we’re in, I feel like Internet privacy should be talked about,” they said. This includes things like consent and sending naked photos with a significant other if you’re under 18. “That is technically a crime. It’s not just parents saying ‘don’t do it because we don’t want you to.’ One or both of you could get in trouble legally,” K added.

Understanding what kinds of sexual protection to use.

Isaac Thomas, a 21-year-old student at Valencia College in Orlando, lives with a visual impairment and went to a high school that he said didn’t even offer sexual education courses. “I did go to a school for students with disabilities and, unfortunately, during my entire time there, there was never any type of sexual education class,” he said.

And Isaac noted that sexual awareness plays a large role in protection. “They should understand that just because a person has a disability, does not mean they don’t still have the same hormones and sexual desires as other individuals. It’s even more important that they teach sex education to people that have disabilities so they’re not taken advantage of in any kind of sexual way. If anything, it should be taught even more among the disabled community. Ignoring this problem will not make it go away. If this problem is not addressed, it will increase,” Isaac said.

Before entering college, Isaac said he wishes he had received more information about condoms. “I wish I had learned what types of condoms are best for protection. I should’ve also learned the best type of contraceptive pills to have in case unplanned sexual activity happens with friends or coworkers.”

Body image matters.

Nicole Tencic, a 23-year-old senior at Molloy College in New York, who is disabled, fine-motor challenged, and hearing impaired, believes in the importance of exploring and promoting positive body image for all bodies. Nicole, who became disabled at the age of six after undergoing high-dose chemotherapy, struggled to accept herself and her disability. “I became disabled when I was old enough to distinguish that something was wrong. I was very self-conscience. Accepting my disability was hard for me and emotionally disturbing,” she shared. “I was always concerned about what other people thought of me, and I was always very shy and quiet.”

It was when she entered college that Nicole really came to accept her body, embrace her sexuality, and develop an interest in dating. “I had my first boyfriend at 21. The reason I waited so long to date is because I needed to accept myself and my differences before I cared for anyone else. I couldn’t allow myself to bring someone into my life if I was unaccepting of myself, and if I did, I would be selfish because I would be more concerned about myself,” Nicole said. She also recognized the fact that while sexuality and disability are separate topics that need to be addressed differently, they can impact each other. “Disability may influence sexuality in terms of what you like and dislike, and can and cannot do,” but overall, “one’s sexuality does not have to do with one’s disability,” she clarified.

It’s important to make sex ed inclusive to multi-marginalized populations.

Dominick Evans, a queer and transgender man living with Spinal Muscular Atrophy, various chronic health disabilities, and OCD, believes in the importance of sexual education stretching beyond the cisgender, heteronormative perspective. He also understands the dangers associated with being a member of a marginalized group. “The more marginalized you are, the less safe you are when it comes to sex,” he said in an email.

Dominick, who works as a filmmaker, writer, and media and entertainment advocate for the Center for Disability Rights, has even developed policy ideas related to increased inclusion for students with disabilities — especially LGBTQ students with disabilities. “These students are at higher risk of sexual assault and rape, STIs like HIV, unplanned pregnancies, and manipulation in sexual situations,” Dominick said. “Since disabled LGBTQIA students do not have access to sexual education, sometimes at all, let alone education that makes sense for their bodies and sexual orientation, it makes sense the rates for disabled people when it comes to sexual assault and STIs are so much higher.”

According to Dominick, the fact that many disabled students are denied access to sexual health curriculum is at the root of the problem. “When it comes to disparities in the numbers of sexual assault, rape, STIs, etc. for all disabled students, not having access to sexual education is part of the problem. We know this is specifically linked to lack of sex ed, which is why sex ed must begin addressing these disparities.”

So what does Dominick have in mind in terms of educational policies to help improve this issue? “The curriculum would highlight teaching students how to protect themselves from sexual abuse, STI and pregnancy prevention campaigns geared specifically at all disabled and LGBTQIA youth, ensuring IEPs (individualized education programs) cover sex ed inclusion strategies, access to information about sexuality and gender identity, and additional education to address disparities that affect disabled LGBTQIA students who are people of color.”

Understanding power dynamics and consent.

It’s important to understand the power dynamic that often exists between people with disabilities and their caretakers. Many people with disabilities rely on their caretakers to perform basic tasks, like getting ready in the morning. Women with disabilities are 40% more likely to experience intimate partner violence compared to non-disabled women. This includes sexual, emotional, financial, and physical abuse, as well as neglect. For this reason, women with disabilities are less likely to report their abusers.

“Sometimes they’re more likely to think ‘this is the only relationship I can get,’ so they’re more likely to stay in these abusive relationships or have less access to even pursue courses of action to get out of the relationship. Especially if there is dependence on their partner in some way,” said K.

Dominick agreed. “Many of us often grow up believing we may not even be able to have sexual relationships. We often grow up believing our bodies are disgusting and there is something wrong with them,” he said. “So, when someone, especially someone with some type of power over us like a teacher or caregiver, shows us sexual attention and we believe we don’t deserve anything better or will never have the opportunity for sex again, it is easy to see why some disabled people are able to be manipulated or harmed in sexual situations.”

Dominick said this ideology led to his first sexual experience. “I probably should not have been having sex because I lost [my virginity] believing I had to take whatever opportunities I received,” he said, before going on to acknowledge the falsehood in these assumptions. “I’ve had many other relationships since then, and my last partner, I’ve been with for 15 years.”

But when it comes to disability, consent can be tricky. Some disabilities make communication a challenge. The lack of sexual education for many developmentally disabled students means they often don’t understand the concept of consent.

People with disabilities are more at risk for sexual exploitation and abuse.

According to the United States Department of Health and Human Services, children with disabilities also face a much higher risk of abuse. In 2009, 11% of all child abuse victims had a behavioral, cognitive, or physical disability. In fact, when compared to non-disabled children, children with disabilities are twice as likely to be physically or sexually abused. Those living with developmental disabilities are anywhere from 4 to 10 times more likely to face abuse.

Deni Fraser, the assistant principal at the Lavelle School for the Blind, a school in New York City dedicated to teaching students with visual impairment and developmental disabilities, believes it’s important for all students to understand the importance of boundaries, both other people’s and their own. Many students at the school, who range in age from 2 to 21, also have co-morbid diagnoses, making the students’ needs varied.

“It’s important for our students to know that we want them to be safe at all times,” Fraser said. “Letting them know what’s appropriate touch, not only them touching others, but other people touching them; saying things to them; for people not taking advantage of them; knowing who is safe to talk to and who is safe to be in your personal space; if there’s anything going on with your body, who would be the appropriate person to talk to; not sharing private information — so what is privacy; and the importance of understanding safe strangers, like doctors, versus non-safe strangers.”

The portrayal of disabled bodies matters.

The media also plays a part in perpetuating the idea that individuals with disabilities do not have sex. Sexuality is often viewed as unnatural for individuals with disabilities, and many disabled students internalize that. “Even Tyrion Lannister, one of the most sexual disabled characters on television, usually has to pay for sex, and even he was horribly deceived the first time he had a sexual experience,” Dominick noted. “If the media is not even saying sex is normal or natural for disabled people, and sex education is not inclusive, then often disabled people are having to learn about and understand sex on their own,” he added.

Many students with disabilities also want to see their bodies reflected in sexual education materials. “Part of the curriculum at a lot of different schools includes showing some level of video,” K said. But including a person with a visible physical disability in these videos would go a long way in helping to shatter the stigma surrounding sex and disability, she said. According to K, this would help people understand that sex isn’t only for able-bodied people.

People with disabilities make up a large part of the population. They’re the one minority group any person can become a part of at any time. Therefore, incorporating disability-related information into sexual education curriculum not only benefits students who are already disabled, but it can help students who, at some point in their lives, will experience disability. Embracing an inclusive approach and keeping bias out of the classroom would help raise awareness, create empathy, and celebrate diversity. By listening to disabled voices, we can work toward a society that values inclusivity.

Complete Article HERE!

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‘Why won’t you have sex with me?’ A real look at disability and relationships

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Louise Bruton’s Dublin Fringe Festival show examines our ignorance and prejudices, and takes a real look at disability, sex and relationships

Louise Bruton: ‘We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else.’

Louise Bruton is on her way to buy Buckfast ahead of a visit to a friend’s festival on Inishturk island. Standard. Bruton is a writer and journalist who rose to prominence with her website Legless In Dublin (leglessindublin.com) detailing accessibility issues and reviews of venues and events. As a wheelchair user, she has managed to harness a way of communicating that undercuts preconceptions, prejudices and presumptions.

Bruton is blunt and hilarious. A pinned tweet on her Twitter account is a series of photos of her hugging and dancing with Grace Jones.

But there are also rage-inducing snippets of the reality of being a wheelchair user. Sample line: “Last one on the train in Heuston. Not a staff member or ramp in sight. Doors have been closed again. Guess I live here now.” Hard to stomach, but so necessary. Bruton calls this ridiculousness out.

It’s a meditation on disability, sex, relationships, and the misconceptions of non-disabled people hold about the sex lives of disabled people

Her latest project is a show for the Dublin Fringe Festival, excellently titled Why Won’t You Have Sex With Me?, which plays September 8th-11th at the Project Arts Centre in Temple Bar, Dublin. It’s a meditation on disability, sex, relationships, and the misconceptions of non-disabled people hold about the sex lives of disabled people.

In the show, she’ll talk to the audience – “there will be a lot of interaction with visuals” – and it will also deal with sex and relationships in general.

Bruton hopes that people might leave the show checking themselves a little, wondering if they’ve ever been that person who has figuratively (or literally) “patted someone on the head, or spoken about them in front of them.”

The Fringe show is also inspired by how the media attempts to tap into the “issue” of sex and disability.

A while ago, after the Guardian ran a piece about disabled people and sex – something Bruton identifies as an “evergreen”, annual story – a couple of journalists from Irish outlets contacted her asking if she would be up for discussing the “stigma” associated with having sex with a disabled person.

We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else

“That came in as a very loaded question,” Bruton says, “assuming that there is a stigma. And if there is a stigma, I’m unaware of it. I think it’s pretty unfair to blame anything going on in your love life purely on the fact of a disability. I think that kind of erases everything else about you.”

Bruton sees that story as just another entry point for discussing other people’s relationships and sex lives. Those kinds of articles, she thinks, feel like they use disability as leverage for voyeurism, “I just think it’s a really lazy way to be kind of a pervert about it!”

“We all go through the feast or famine spells when it comes to sex and dating. That’s something that applies to everyone. In the week those journalists contacted me – what if I was going through the famine time? Do I tell them that? ‘Nothing’s happening for me right now, I’m in the famine stages!’ It’s challenging that, pointing out how ridiculous those articles are. They’re done on an annual basis. There’s no evidence to support that our love lives are any different just because we’re disabled.”

“The way this is framed in the media,” Bruton says, “is that if you’re disabled and you’re not having sex, you’re going to die alone, and if you’re disabled and you are having sex, then you’re some sort of a freak or a fetishist.

“You’re put in these two categories, whereas I’m like ‘we’re the same as everybody else’. We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else. The elements that do make it different or difficult, have been created by non-disabled people.

“That is the physical structure of society, where we don’t get into every single pub with everybody else in it, or nightclubs that everybody else is in. There’s also the fact that non-disabled people have a very wrong and archaic view of disabled people. They’re looking at us as if we’re completely different, whereas we go through the exact emotions as everybody else.”

Bruton is the type of person who is up the front at gigs, and when she arrives at parties, the energy in the room fizzes. Her busy social life creates the opportunity for a lot of encounters.

“People will come up to me anyway, because I’m in a wheelchair, and they’ll be like, ‘what happened you?’ And I don’t really want to go into my entire personal history and tell them, because it’s none of their business. I know a lot of my male friends who are in wheelchairs, a lot of people come up to them and very specifically ask them does their penis work.

There’s a manipulative attitude that people have towards disabled people

“I didn’t realise how bad it was for guys. That’s just not what you ask anybody. That is such a juvenile thing, firstly, and it’s just really rude as well.

“It seems to be that men are put on the spot in a much more invasive way,” she says. “People I know who are disabled and are in relationships, they have mentioned times where they’ve felt unsure if their partner is comfortable with them being disabled, and that has gone on for years.”

Bruton says that there seems to be a general feeling that disabled people “should ‘take what you can get’” when it comes to sex and relationships.

“There’s a manipulative attitude that people have towards disabled people – ‘you’re lucky to be getting anyone at all’ – and if you’ve any relationship issues, it’s like ‘you should be glad they’re going out with you’. It might create this fear that they [disabled people] mightn’t have many options so they might have to ‘settle’. Nobody should ever feel that settling is an option.”

A non-disabled person Bruton interviewed as research for the show said that if they ended a relationship with a disabled person, they would be afraid it would be because of the disability, and not a personality clash. “There’s a lot of double takes going on in people’s minds,” Bruton says, “you really are questioning how things are being perceived by other people.”

The superficiality of online dating causes issues, Bruton says. “Because the way that dating has changed – because online dating is such a big part of it now – there is a superficial element to dating now more than ever. You’re basing things on three photos and one sentence that describes your entire life.

“I’m hesitant in the online world . . . I don’t shy away from having my wheelchair in photos. The guys are immediately like ‘why are you in a wheelchair? What happened you?’ There’s no way to brush that off politely. I’ve tried.

“In real life you can say ‘oh I’ll tell you another time!’, but in a message on your phone, they find that rude, or don’t know what to say next.”

If you’re so concerned with taking advantage of someone with a disability, you should be concerned about taking advantage of all other people

As part of the making of the show, Bruton interviewed non-disabled people about disabled people, sex and dating. One word kept repeating. “The word ‘vulnerable’ came up a lot,” Bruton explains. “This is mostly men who said this. Men felt that if they were to date or have sex with a woman with a disability or a man with a disability, they would somehow be taking advantage of a vulnerable person.

“So that goes back to that old-fashioned idea of disability that we weren’t in the same schools, we were sent away to homes to live and be looked after. That idea stuck with people…

“We’re no more vulnerable than the next person. Of course there are different levels to disability. But generally, if you’re so concerned with taking advantage of someone with a disability, you should be concerned about taking advantage of all other people. There’s a lot of hypocrisy with it.”

Something that has been said to Bruton has been the idea that, “‘it takes a very special person to go out with someone who has a disability’.

“The way I interpret that, is that means you have to be a carer almost, instead of being a boyfriend or a girlfriend. I think that’s at the back of people’s minds – they think they’re going to have to look after the person, rather than just spending time with them.”

I think a lot of people see relationships as a status thing

Regarding her own experiences, a not exactly infrequent one is strangers inviting themselves to discuss aspects of her personal life with her – asking if a friend is a boyfriend, or manufacturing a love story out of nowhere. “A lot of people go straight into asking if you’re in a relationship. I think a lot of people see relationships as a status thing, that you can only be truly accepted if you’re loved in that way.”

When Bruton was on crutches before using a wheelchair, she sometimes experienced guys freaking out and backing away when they realised she didn’t just have a sprained ankle or a sports injury. “Maybe they thought I was lying to them or something. Like I was tricking them. That was the vibe I got, that I had lied to them to get their attention.”

At this point, she realises there is an advantage to being able to identify such shallowness from the get-go. It’s like an extra layer of insight to character judgement that non-disabled people may not have, “It’s a really key indicator. Someone else, it could take them a few months to find out if they’re an asshole or not, but I can find out in a second.”

Complete Article HERE!

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The charity helping disabled people with sex

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A charity in Taiwan has volunteers who provide sexual “help” for a small number of disabled people.

Complete Article HERE!

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Sex and parenthood for people with disabilities

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By Kristin Linton

Do people with disabilities have sex? Should they marry and have children?

As part of a research project, Emily Hops, a graduate of CSU Channel Islands, and I interviewed eight college students with disabilities about their general experiences with intimacy and sexual health last spring.

Each student expressed his or her own internal struggle with whether or not they should bear children themselves.

One said, “Is it selfish to have a kid? Even if your kid doesn’t have a disability, are you putting that burden on that kid to one day take care of you because you have a disability?”

Some students shared stories about professionals, even teachers, who dissuaded them from developing intimate relationships with others.

Even though California passed the Healthy Youth Act of 2015, which mandates adapted sex education for students with disabilities, I wonder if we have fully embraced the sexual rights of people with disabilities — especially considering California’s dark past with something called the “eugenics movement.”

Eugenics is essentially selective breeding in order to increase the occurrence of desirable inherited characteristics. California was a leader in the eugenics movement, which resulted in the sexual sterilization of 20,000 people in the state between 1909 and 1979. Seventy percent of those sterilized without their consent had various disabilities, spanning from schizophrenia to a casual diagnosis of being “feeble-minded.”

With a total of 60,000 sterilizations across the U.S., California was responsible for a third of all the procedures. Castrations and tubal ligations were common procedures performed. Some even argue that the U.S. led the way for Nazi Germany’s mass use of sexual sterilizations during the Holocaust.

Along with sexual sterilization laws in the eugenics movement came laws prohibiting marriage between people with disabilities, with the assumption being that reproduction was the reason for marriage.

California passed an annulment law, which specifically stated physical or mental capacity and consent as reasons for deeming a marriage null and void.

While there were other reasons that a marriage could be annulled, physical and mental capacity as well as lack of consent were the only reasons that involved third parties, such as parents or physicians.

These third parties could argue that either the bride or groom was “physically incapable of entering into the marriage state” or “was of unsound mind” at the time of marriage, and the marriage could be annulled.

If third parties were aware of a couple with disabilities planning a marriage, those third parties could make an argument about the incapacity of the bride and/or groom before the marriage date and shut it down altogether. In the early 1900s, 28 percent of marriages were annulled on these grounds.

The law is still on the books. Although rarely enforced today, these reasons for annulment remain in the wording of California Family Code Section 2210.

Not only is marriage annulment due to disability still lawful, but our history of perceiving people with disabilities as “asexual” beings still lives on today.

My hope is that we can learn to appreciate all people with disabilities as sexual beings with full sexual citizenship in hopes that they themselves do not question their own rights as human beings.

Complete Article HERE!

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

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By Hallie Levine

When 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.

sex-edKatie 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?”

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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!”

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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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