Commentary Human Rights

Discussing Disabled Sexuality Is a Radical Act

s.e. smith

The American Academy of Pediatrics recently released an update to its guidelines that included an expansion discussion of sexual health for disabled teens. That's an incredibly important addition—so why are so few media outlets covering it?

On September 29, the American Academy of Pediatrics (AAP) published a critical update to its guidelines on teen and adolescent sexuality, providing important new information for pediatricians preparing to help their patients access reproductive health services at a critical time in their lives. The media, including numerous progressive sites, quickly zeroed in on one aspect of the update: the advice that long-lasting contraceptive options, including intrauterine devices (IUDs), were the best choice for sexually active teens. What the news seemed less interested in, however, was the discussion on handling sexual health for disabled teens buried halfway through the document.

By acknowledging that disabled teens are sexually active at all, the AAP committed a radical act—but the public appeared largely indifferent. Although the AAP found the subject of disabled sexuality important enough to dedicate an entire section of the guidelines to it, only a handful of pieces, like this one on the disability-specific news site Disability Scoop, addressed that aspect. The AAP isn’t new to this, either: The organization even specifically noted in 2007 that sexuality for disabled teens was “often forgotten.” September’s new guidelines expand on the subject while also reminding pediatricians that this is a continuing issue.

Though the new guidelines in no way guarantee a universal change in doctors’ behavior, they do spell out a number of clear strategies for changing the dismal status quo surrounding teen sexual education and reproductive health care. The recommendations for doctors to provide long-acting birth control to teens is, indeed, a vital aspect of the update, as such methods have historically been provided primarily to adults. Important, too, is the section encouraging pediatricians to keep up with law and policy in their states in terms of patient confidentiality—particularly that of teens. (While this subject received comparatively less attention in the media, it was still noted.)

But the update on disabled sexuality is equally important, and underreporting of the issue underscores a common social problem. The guidelines make it explicitly clear that some disabled teens, just like non-disabled ones, are sexually active: They need appropriate care, including sexual health screenings, advice about birth control, supplies of condoms and contraceptives, and answers to questions about safer sex and relationships. Similarly, the guidelines note, disabled teens may also need birth control for issues like controlling heavy menstruation or acne, making it critical to protect access to those contraceptive methods as well.

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Overall, the recommendations in the guidelines stated:

Pediatricians should remember that adolescents with chronic illnesses and disabilities have similar sexual health and contraceptive needs to healthy adolescents while recognizing that medical illness may complicate contraceptive choices.

The AAP also points clinicians to the U.S. Medical Eligibility Criteria for Contraceptive Use, which provides specific information from the Centers for Disease Control and Prevention about interactions between various contraceptives and specific disabilities and medications. Including this resource sends a clear message to clinicians that information on the safety of contraceptives for disabled teens is readily available; therefore, ignorance on the subject is inexcusable.

Disabled children and teens tend to see doctors more frequently than non-disabled ones, providing numerous opportunities for education and intervention. So if care providers follow these guidelines, outcomes could radically improve for disabled teens. Such a move would reduce pregnancy and sexually transmitted infection (STI) rates, reduce the incidence of abuse, increase adolescents’ comfort with reporting sexual assault and rape, and empower disabled teens to make their own sexual choices.

But by noting that disabled teens have sex, the AAP wasn’t just providing vital medical guidance. It was also forcing the sexual health community—including sex educators, medical professionals, and the media—to recognize the truth of disabled sexuality. We live in a society where many individuals seem unaware that disabled people have sex, enjoy sexuality, and are at some unique risks in terms of reproductive health. The document serves as a reminder that teens, like many other people, have sex, and that disabled teens are no different. Perhaps the most striking evidence of this is the fact that the section on disability and sexuality was quietly and calmly included in the document, rather than flagged for special attention.

And yet, it fell entirely off the radar. It was almost as though reporters were blinkered during that section of the report, unable to acknowledge that it existed. This was characteristic of the way society interacts with disability issues in general. The public views disability as an object of fear and sometimes active hatred, rather than something that should be engaged; non-disabled individuals are often reluctant to explore the topic of disability at all, let alone interact directly with disabled people.

The media’s decision not to cover the section, in turn, reinforced dangerous social attitudes about sex and disability. Notably, it wasn’t just the mainstream media who ignored the subject: Websites that ostensibly provide more intersectional, holistic coverage of feminist issues also overlooked it, and it wasn’t a topic of discussion on outlets explicitly dedicated to reproductive health and rights topics. In short, anyone who didn’t read the guidelines would have missed it. And propagating the idea that disabled people are not sexual has real consequences.

Doctors, schools, and even disabled teens’ own parents often either deprive them of sexual education or provide them with inadequate information that doesn’t address their specific needs and risk factors. This can lead to confusion among disabled teens as they wrestle with their own sexuality. Subjects of sexual orientation and gender, for example, may be unfamiliar, which can harm LGBQT disabled teens and increase their risk of depression, anxiety, and other mental health conditions. Disabled teens may also not understand the mechanics and prevention of STI prevention and pregnancy; tragically, they may not be able to recognize the signs of pregnancy early enough to make an informed decision about whether to terminate it or proceed with it.

In addition, disabled teens may not learn about healthy relationships or have access to the context necessary for discussions about assault and personal boundaries. This can lead to sexual exploitation. In a particularly disturbing example, an Australian nonverbal rape survivor was challenged during her testimony because her communication book—a booklet with images and words illustrating various concepts, allowing her to convey needs, commentary, and other things without speaking—hadn’t included the words “penis” or “rape.” Police would not allow these terms to be added after the assault, effectively preventing the survivor from describing what had happened; officials’ logic was that doing so might create bias or false testimony.

Desexualization also creates “perfect victims” through disbelief and isolation. Because society as a whole thinks that disabled people do not and cannot have sex, members of the public, law enforcement, policymakers, and even medical professionals have difficulty conceiving of the idea that they might be targets for rape and assault. This leaves disabled people, particularly those in institutional care or under the “care” of abusive individuals, vulnerable to danger. Again, some may not realize that they are being sexually abused, as they lack understanding about what kinds of touch and interactions are appropriate. Others have limited social support, making them prime targets.

The lack of follow-up when people report abuse is also both a result of and a contributor to the problem. As exposed in a PBS and ProPublica documentary, administrators often ignore neglect and abuse in assisted living facilities (which include disabled people as well as older adults), even when residents and family members report it. Law enforcement and coroners, when extreme cases cause death, can also write off such mistreatment. And the same holds true for disabled people living in their communities.

Creating more access to reproductive health services increases safety for disabled people and raises the profile of disabled sexuality overall by making members of the public aware of disability issues. So for disabled teens, having their sexuality acknowledged and addressed by the AAP is a huge step forward. In turn, the AAP guidelines reflect larger, and critical, issues that the reproductive health community needs to acknowledge: In the greater fight for reproductive rights for all, disabled people belong under the banner alongside everyone else.

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