People With Down Syndrome Need Healthy Sex Lives, Too
"Don't give up and keep on trying."
Maryanne Martin and Tommy Pilling
Dating can be brutal, no matter who you are. We’re all susceptible to the nervous excitement of new attraction, the giddiness, and the heartbreak that often accompanies the search for love and connection. These feelings and experiences are no different for many adults with Down Syndrome leading active, and fulfilling romantic lives. In recent years, documentary films and series like ‘Monica and David’ and A&E’s ‘Born This Way’ have shed light on some of the unique joys and challenges of romantic relationships between people with Down Syndrome, and particularly, the struggle to maintain a happy, healthy, and independent sex life—an issue not often discussed and loaded with misconceptions about sex and intellectual disability.
Historically, sex and dating among people with Down Syndrome hasn’t even been formally studied. “We don’t have data on sexual activity,” says Terri Couwenhoven—an author and sex educator specializing in creating programs and resources for people with intellectual disabilities. According to to Couwenhoven, this is partly due to cultural stigma and sex shaming that affects the general population as a whole. “We’re a country that has a lot of hang ups about sexuality in general, but when you start talking about people with intellectual or developmental disabilities and sexuality...the discomfort is so magnified.”
Couwenhoven partially attributes much of the lack of information about sexuality in people with Down Syndrome to common misconceptions that individuals with the condition are sterile, incapable of, and uninterested in sex. A 2006 study indicated that men with Down Syndrome are fertile in some cases, as are some women, pointing to this population’s need for accessible sex education as well as access to contraception—something parents, caretakers, or even doctors may not be comfortable discussing. A lack of open and frank communication regarding sexual health can also lead to disparities in access to gynecological healthcare.
“Infantilization is common,” Couwenhoven tells me. “[It’s] the idea that people with intellectual disabilities are like children and consequently we should treat them that way.” Couwenhoven also addresses the other end of the spectrum—what she calls “the oversexed myth”—the idea that people with Down Syndrome and intellectual disability experience a heightened and pathological hypersexuality. Any socially inappropriate expressions of sexuality in people with Down Syndrome, Couwenhoven explains, “stem from a lack of information about their bodies, about boundaries, [or] about relationships,” but are not innately linked to the condition as is often believed.
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Typical sex education resources and materials suited to the general population, Couwenhoven says, often don’t meet the needs of individuals with Down Syndrome, who may benefit from “role playing and practicing skills” and “more repetition and reviewing of concepts.” She believes that safer sex and positivity around sexuality issues looks the same for all of us. “However...the way we provide the information should look a bit different—not so much content, but process.”
Specialized sex education resources for people with Down Syndrome are increasingly in demand, Couwenhoven explains, but can be incredibly difficult for individuals and their caregivers to access. The presence of caregivers is—in many cases—an obstacle itself, and parental anxiety can be a huge barrier to learning about sex and dating. As young people with Down Syndrome grow into adulthood, many require lifelong support from their parents, who may assist with daily living tasks. Even with access to the best, most specialized sex education, living at home doesn’t allow space for much privacy, and caregivers may have to confront their own attitudes and biases toward sexuality and disability.
“I cannot tell you how judged I have been by my own community,” says Mary Erickson, whose 26-year-old daughter, Marissa, has Down Syndrome. She tells me of the backlash she’s received from other parents of adults with Down Syndrome for discussing sexuality openly with her daughter. Earlier this year, Marissa and her boyfriend John were featured in a viral CNN video documenting their romantic relationship, which did not include of the more taboo subject matter and portrayed a “fluff” image of dating with Down Syndrome.
Mary, who also appears in the video, adds, “It almost seems that is what the public wants and is comfortable seeing.” Maryanne Martin and Tommy Pilling, who both have Down Syndrome, have been happily married for over twenty years and living independently for fifteen. According to Maryanne’s sister Lindi, the two also have a happy and healthy intimate relationship, though immediate family and friends haven’t always been supportive. “When Maryanne and Tommy first got married, our mum received a lot of criticism. [She] was told it was disgusting, and was asked what she would do about their sex life. Her reply was: ‘I will leave that up to them, thank you.’”
When parents or other caregivers sway the other way—unwilling or unprepared to discuss safe sex, boundaries, and consent with their adult children—individuals with Down Syndrome run similar risks associated with sex among non-disabled people like “unwanted pregnancy, sexually transmitted disease, and sexual exploitation,” according to Down Syndrome International. They also run a higher risk for sexual abuse.
With all of these factors coming into play, dating with Down Syndrome can be a complicated. As Couwenhoven writes about her own daughter in an article published by the University of Minnesota, many people with Down Syndrome are “pretty much on track with most everything related to sexuality: physical development, experiencing sexual feelings and crushes, [the] desire to date...and current aspirations to have a serious, long-term relationship as an adult,” regardless of cognitive disability.
Meeting a compatible partner can be challenging for anyone, but this challenge can be amplified for people with Down Syndrome because of difficulties with communication and speech fluency, for example. It’s not at all uncommon for individuals with Down Syndrome to have a desire to connect romantically with others, but like much of the general population, it’s difficult to know where to start, or what to do after a breakup.
Cody Carlson, a 22-year-old with Down Syndrome and former So You Think You Can Dance contestant, tells me that his last girlfriend, who he dated for six months, broke up with him over the phone while he was away at a camp program. I can tell it’s not an easy topic for him to discuss. Like many young people near his age, he mostly mingles with women in a group setting. “We go out with girls who are friends,” he tells me. “We go to the movies. We might go out to eat.” Cody tells me he’d like to date someone else soon, but doesn’t know where exactly he should look for a potential new girlfriend. His advice to other young people with Down Syndrome looking for romantic connection, he tells me, is “don’t give up and keep on trying,” and anyone meeting him for the first time should give him a chance.
Though sex and disability are still considered taboo, a quest for love, self-actualization, pleasure, and happiness lie at the center of sexual expression—these are universal desires and deserves, regardless of whether or not an individual can fully grasp the “true meaning” (which is actually relative, right?) of love or relationships.
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