“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.