fbpx The Dismal State of Disability Sex Ed in the U.S.

The Dismal State of Disability Sex Ed in the U.S.

Kids with disabilities receive little to no information on sexual health.
Written by

Tim Lalonde

Dominic Bergfield, 24, has yet to find much useful information about his sexual health—not through his own research, not in a doctor's office and definitely not from his school in Missouri.

"I had very basic sex education back in school," he said. "Actually, we never even covered sex. We covered sweating and hair growth. You know, the typical 'This is why you have zits now' speech."

Bergfield has been paralyzed from the neck down since he was 4 years old. As a quadriplegic, he has navigated his disability and learned to do everything from playing complex video games to writing a series of fantasy novels. But he has never been able to find much information on what sexual activity might look like for people like him who live with near-total paralysis.

When he turned 20, he finally felt comfortable enough to ask his doctor some burning questions about how his disability impacts his sexual health. Again, he didn't find most of the answers he sought.

"It was embarrassing and I learned, admittedly, very little," Bergield said. "I mostly remember hearing depressing scientific jargon that boiled down to a doc saying that I had maybe a 20 percent chance or less of ever fathering a child."

Bergfield's story is just one example of the challenges that people with disabilities face when they try to access information about their sexuality. A big part of the problem starts in classrooms, where youth with disabilities rarely see themselves represented in their sex education classes—if they receive any sex ed at all.

But the lack of disability-inclusive sex ed in schools is part of a broader social order that often fails to think about people with disabilities as fully developed human beings, with all of the same desires and needs for healthy adult relationships as their able-bodied peers.

Why disability sex ed matters

School-based sex ed is one of the few reliable sources of sexual health information many young people receive, noted a 2021 report on disability sex ed from the nonprofit organization Sexuality Information and Education Council of the United States (SIECUS). Formal sex education is particularly important for youth with disabilities, who are less likely to receive relevant sexual health information from their parents, healthcare providers or peers, the report stated.

"Instead of receiving sex education from these social sources, [youth with disabilities] report learning about topics like sexually transmitted infections and contraceptives from television/radio, the internet or even pornography," the report read.

This lack of accurate and comprehensive sex ed leaves young people with disabilities vulnerable to sexual victimization or being viewed as sex offenders, according to the report.

In extreme scenarios, people with disabilities find themselves in trouble after crossing a line they were never taught existed, said Kayla McKean, program manager at SexEdVA, a program at James Madison University in Virginia.

"They [could be] ending up in a situation where they could be criminally charged for things that they just didn't know and had never had a conversation about," she explained.

Far more often, however, people with disabilities are victims of sexual assault rather than perpetrators. They are seven times more likely to be abused than their nondisabled peers, noted Adrienne Griggs, innovation and impact coordinator at SexEdVA's Disability-inclusive Sexual Health Network (DSHN).

But beyond the typical negative outcomes associated with poor sex ed—such as abuse, disease or unintended pregnancy—youth with disabilities are also denied the unburdened relationship with their body that all people deserve, according to Melisa Holmes, an OB-GYN in South Carolina, co-founder of the wellness app Girlology, and co-author of "You-ology: A Puberty Guide for Every Body."

"Shame and embarrassment towards your body is one of the biggest negative outcomes of a lack of sexual education," Holmes explained.

Shame prevents many of her disabled and nondisabled patients alike from seeking medical assistance when they need it—or from enjoying sexual activity at all.

"[Shame] undermines our ability to enjoy and appreciate our bodies and how they feel pleasure and how they share experiences with other people," she added.

Bad for everyone, worse for marginalized students

To some degree, sex ed for American students with disabilities is terrible because sex ed in the United States is terrible on the whole for everyone. At the time of this writing, there are no federal laws mandating what should be taught in sex education classes. That's true at the state level, as well. Only 29 states and Washington, D.C., mandate sex education; the rest leave curriculum largely up to school district discretion, according to SIECUS.

When sex ed programs do exist, they often fail to provide even the most basic information for any student outside cisgender, heterosexual and able-bodied norms. Holmes said the typical level of sex education she encounters in her work has been insufficient or exclusionary, or both.

"We find that sex ed for most kids—if they get it—they'll get one puberty conversation around fourth or fifth grade and one conversation about sex in the seventh grade, and most of the programs are not gender-inclusive or not inclusive of any people with disabilities," Holmes said.

The state of American disability sex ed

The exact state of disability sex ed in America is difficult to pin down. SIECUS reports that data is "sorely lacking" on what kind of sex ed is provided to youth with disabilities, how they respond to it or how many receive any sex education at all.

The available evidence suggests that disability sex ed in the U.S. is quite poor, however. Only 53 percent of youth in special education programs report receiving reproductive health information, and only three states explicitly include youth with disabilities in sex ed requirements, according to the report.

Virginia, where DSHN is based, became one of those states in 2020 after passing bill House Bill 134. Since then, a big part of DSHN's work involves exploring the gaps in sexual education in Virginia schools and working to refine sex ed programs and curricula. Its work highlights some of the broader problems with disability sex ed across America.

"One issue they've encountered is accessibility. Sex ed lessons or classroom materials often aren't designed to accommodate different learning styles," Griggs said.

"A teacher might use euphemisms and figurative language—say, the 'birds and the bees'—that can be difficult to parse for students with cognitive disabilities," Griggs added.

Classes may rely on visual aids that are inaccessible to students with vision difficulties. Other students might require social stories to better understand certain concepts.

In other cases, students with cognitive disabilities receive sex ed that doesn't match their age. Teachers may attempt to teach students at their "mental age" (a concept many activists argue is inaccurate and harmful) rather than their actual age.

"People with disabilities are often infantilized," Griggs said.

Stigma beyond the classroom

Bergfield has never been able to find much useful information on his own sexual health, even outside the classroom. He believes the reason is rooted in how society thinks about disability or, more often, prefers not to think about it at all.

"People like myself are often under-represented both out of politeness and ignorance," he explained. "This lack of representation leads to a lack of awareness. I think there's little information quite simply because nobody thinks about it. Disabilities are a part of our society to be hidden."

"Able-bodied people often fail to think of people with disabilities as sexual beings capable of the same depth of feeling and desire as their nondisabled peers," Holmes said. "That stigma prevents discussions that would help build a better understanding of disabled sexuality in health care.

"The assumption around [people with disabilities] is that they don't have sex or that they can't have sex," she added. "Or they're not capable of having a deep, meaningful, physical or emotional relationship with somebody else. And that's just 100 percent wrong."

What would disability-inclusive sex ed look like?

"Disability" is a broad term that spans a range of physical and cognitive conditions.

"Better sexual education for people with disabilities needs to be a collective effort," McKean explained. "It needs to be an ongoing conversation between schools, service providers and community members to develop inclusive and comprehensive sexual health resources."

Holmes believes representation is a crucial piece missing from sex ed curricula in schools.

"When young people don't see their bodies or sexualities represented in sex ed classes, they can internalize the incorrect and destructive belief that they are somehow abnormal," she said. "Especially for kids, when they don't feel seen, they feel like something is wrong with them. [When] they don't see themselves represented, they feel like a freak of nature. And they're not. We're all here because of nature."

"Developing a curriculum to accommodate such a diversity of different bodies and needs would be difficult," Bergfield said. "But that's not a good reason not to try. I don't know where such an undertaking would begin. I do, however, believe it is a cause worth fighting for."