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.

Roundups Law and Policy

Gavel Drop: Republicans Can’t Help But Play Politics With the Judiciary

Jessica Mason Pieklo & Imani Gandy

Republicans have a good grip on the courts and are fighting hard to keep it that way.

Welcome to Gavel Drop, our roundup of legal news, headlines, and head-shaking moments in the courts.

Linda Greenhouse has another don’t-miss column in the New York Times on how the GOP outsourced the judicial nomination process to the National Rifle Association.

Meanwhile, Dahlia Lithwick has this smart piece on how we know the U.S. Supreme Court is the biggest election issue this year: The Republicans refuse to talk about it.

The American Academy of Pediatrics is urging doctors to fill in the blanks left by “abstinence-centric” sex education and talk to their young patients about issues including sexual consent and gender identity.

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Good news from Alaska, where the state’s supreme court struck down its parental notification law.

Bad news from Virginia, though, where the supreme court struck down Democratic Gov. Terry McAuliffe’s executive order restoring voting rights to more than 200,000 felons.

Wisconsin Gov. Scott Walker (R) will leave behind one of the most politicized state supreme courts in modern history.

Turns out all those health gadgets and apps leave their users vulnerable to inadvertently disclosing private health data.

Julie Rovner breaks down the strategies anti-choice advocates are considering after their Supreme Court loss in Whole Woman’s Health v. Hellerstedt.   

Finally, Becca Andrews at Mother Jones writes that Texas intends to keep passing abortion restrictions based on junk science, despite its loss in Whole Woman’s Health.

Culture & Conversation Human Rights

Let’s Stop Conflating Self-Care and Actual Care

Katie Klabusich

It's time for a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities.

As a chronically ill, chronically poor person, I have feelings about when, why, and how the phrase “self-care” is invoked. When International Self-Care Day came to my attention, I realized that while I laud the effort to prevent some of the 16 million people the World Health Organization reports die prematurely every year from noncommunicable diseases, the American notion of self-care—ironically—needs some work.

I propose a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities. How we think about what constitutes vital versus optional care affects whether/when we do those things we should for our health and well-being. Some of what we have come to designate as self-care—getting sufficient sleep, treating chronic illness, allowing ourselves needed sick days—shouldn’t be seen as optional; our culture should prioritize these things rather than praising us when we scrape by without them.

International Self-Care Day began in China, and it has spread over the past few years to include other countries and an effort seeking official recognition at the United Nations of July 24 (get it? 7/24: 24 hours a day, 7 days a week) as an important advocacy day. The online academic journal SelfCare calls its namesake “a very broad concept” that by definition varies from person to person.

“Self-care means different things to different people: to the person with a headache it might mean a buying a tablet, but to the person with a chronic illness it can mean every element of self-management that takes place outside the doctor’s office,” according to SelfCare. “[I]n the broadest sense of the term, self-care is a philosophy that transcends national boundaries and the healthcare systems which they contain.”

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In short, self-care was never intended to be the health version of duct tape—a way to patch ourselves up when we’re in pieces from the outrageous demands of our work-centric society. It’s supposed to be part of our preventive care plan alongside working out, eating right, getting enough sleep, and/or other activities that are important for our personalized needs.

The notion of self-care has gotten a recent visibility boost as those of us who work in human rights and/or are activists encourage each other publicly to recharge. Most of the people I know who remind themselves and those in our movements to take time off do so to combat the productivity anxiety embedded in our work. We’re underpaid and overworked, but still feel guilty taking a break or, worse, spending money on ourselves when it could go to something movement- or bill-related.

The guilt is intensified by our capitalist system having infected the self-care philosophy, much as it seems to have infected everything else. Our bootstrap, do-it-yourself culture demands we work to the point of exhaustion—some of us because it’s the only way to almost make ends meet and others because putting work/career first is expected and applauded. Our previous president called it “uniquely American” that someone at his Omaha, Nebraska, event promoting “reform” of (aka cuts to) Social Security worked three jobs.

“Uniquely American, isn’t it?” he said. “I mean, that is fantastic that you’re doing that. (Applause.) Get any sleep? (Laughter.)”

The audience was applauding working hours that are disastrous for health and well-being, laughing at sleep as though our bodies don’t require it to function properly. Bush actually nailed it: Throughout our country, we hold Who Worked the Most Hours This Week competitions and attempt to one-up the people at the coffee shop, bar, gym, or book club with what we accomplished. We have reached a point where we consider getting more than five or six hours of sleep a night to be “self-care” even though it should simply be part of regular care.

Most of us know intuitively that, in general, we don’t take good enough care of ourselves on a day-to-day basis. This isn’t something that just happened; it’s a function of our work culture. Don’t let the statistic that we work on average 34.4 hours per week fool you—that includes people working part time by choice or necessity, which distorts the reality for those of us who work full time. (Full time is defined by the Internal Revenue Service as 30 or more hours per week.) Gallup’s annual Work and Education Survey conducted in 2014 found that 39 percent of us work 50 or more hours per week. Only 8 percent of us on average work less than 40 hours per week. Millennials are projected to enjoy a lifetime of multiple jobs or a full-time job with one or more side hustles via the “gig economy.”

Despite worker productivity skyrocketing during the past 40 years, we don’t work fewer hours or make more money once cost of living is factored in. As Gillian White outlined at the Atlantic last year, despite politicians and “job creators” blaming financial crises for wage stagnation, it’s more about priorities:

Though productivity (defined as the output of goods and services per hours worked) grew by about 74 percent between 1973 and 2013, compensation for workers grew at a much slower rate of only 9 percent during the same time period, according to data from the Economic Policy Institute.

It’s no wonder we don’t sleep. The Centers for Disease Control and Prevention (CDC) has been sounding the alarm for some time. The American Academy of Sleep Medicine and the Sleep Research Society recommend people between 18 and 60 years old get seven or more hours sleep each night “to promote optimal health and well-being.” The CDC website has an entire section under the heading “Insufficient Sleep Is a Public Health Problem,” outlining statistics and negative outcomes from our inability to find time to tend to this most basic need.

We also don’t get to the doctor when we should for preventive care. Roughly half of us, according to the CDC, never visit a primary care or family physician for an annual check-up. We go in when we are sick, but not to have screenings and discuss a basic wellness plan. And rarely do those of us who do go tell our doctors about all of our symptoms.

I recently had my first really wonderful check-up with a new primary care physician who made a point of asking about all the “little things” leading her to encourage me to consider further diagnosis for fibromyalgia. I started crying in her office, relieved that someone had finally listened and at the idea that my headaches, difficulty sleeping, recovering from illness, exhaustion, and pain might have an actual source.

Considering our deeply-ingrained priority problems, it’s no wonder that when I post on social media that I’ve taken a sick day—a concept I’ve struggled with after 20 years of working multiple jobs, often more than 80 hours a week trying to make ends meet—people applaud me for “doing self-care.” Calling my sick day “self-care” tells me that the commenter sees my post-traumatic stress disorder or depression as something I could work through if I so chose, amplifying the stigma I’m pushing back on by owning that a mental illness is an appropriate reason to take off work. And it’s not the commenter’s fault; the notion that working constantly is a virtue is so pervasive, it affects all of us.

Things in addition to sick days and sleep that I’ve had to learn are not engaging in self-care: going to the doctor, eating, taking my meds, going to therapy, turning off my computer after a 12-hour day, drinking enough water, writing, and traveling for work. Because it’s so important, I’m going to say it separately: Preventive health care—Pap smears, check-ups, cancer screenings, follow-ups—is not self-care. We do extras and nice things for ourselves to prevent burnout, not as bandaids to put ourselves back together when we break down. You can’t bandaid over skipping doctors appointments, not sleeping, and working your body until it’s a breath away from collapsing. If you’re already at that point, you need straight-up care.

Plenty of activities are self-care! My absolutely not comprehensive personal list includes: brunch with friends, adult coloring (especially the swear word books and glitter pens), soy wax with essential oils, painting my toenails, reading a book that’s not for review, a glass of wine with dinner, ice cream, spending time outside, last-minute dinner with my boyfriend, the puzzle app on my iPad, Netflix, participating in Caturday, and alone time.

My someday self-care wish list includes things like vacation, concerts, the theater, regular massages, visiting my nieces, decent wine, the occasional dinner out, and so very, very many books. A lot of what constitutes self-care is rather expensive (think weekly pedicures, spa days, and hobbies with gear and/or outfit requirements)—which leads to the privilege of getting to call any part of one’s routine self-care in the first place.

It would serve us well to consciously add an intersectional view to our enthusiasm for self-care when encouraging others to engage in activities that may be out of reach financially, may disregard disability, or may not be right for them for a variety of other reasons, including compounded oppression and violence, which affects women of color differently.

Over the past year I’ve noticed a spike in articles on how much of the emotional labor burden women carry—at the Toast, the Atlantic, Slate, the Guardian, and the Huffington Post. This category of labor disproportionately affects women of color. As Minaa B described at the Huffington Post last month:

I hear the term self-care a lot and often it is defined as practicing yoga, journaling, speaking positive affirmations and meditation. I agree that those are successful and inspiring forms of self-care, but what we often don’t hear people talking about is self-care at the intersection of race and trauma, social justice and most importantly, the unawareness of repressed emotional issues that make us victims of our past.

The often-quoted Audre Lorde wrote in A Burst of Light: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

While her words ring true for me, they are certainly more weighted and applicable for those who don’t share my white and cisgender privilege. As covered at Ravishly, the Feminist Wire, Blavity, the Root, and the Crunk Feminist Collective recently, self-care for Black women will always have different expressions and roots than for white women.

But as we continue to talk about self-care, we need to be clear about the difference between self-care and actual care and work to bring the necessities of life within reach for everyone. Actual care should not have to be optional. It should be a priority in our culture so that it can be a priority in all our lives.