Illustration by Hannah Perry.

Inside the Fight for Developmentally Disabled People's Right to Sex

People with intellectual and developmental disabilities are often denied access to sex-positive education and restricted from sexual intimacy. Advocates say it's time for that to change.

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Mar 19 2019, 5:57pm

Illustration by Hannah Perry.

Bernard Carabello lived within the grounds of Willowbrook State School, an institution for youth with intellectual and developmental disabilities, for 18 years. He was 21 in 1972 when he finally left, taking with him the haunting image of a secluded room with a mattress on the floor where, he says, staff would use solitary confinement as a punishment for residents who engaged in sex. That same year, the now infamous institution in Staten Island was the subject of an exposé by broadcast journalist Geraldo Rivera that revealed overcrowding, unsanitary conditions, and the physical and sexual abuse of residents.

“When I was in Willowbrook, sexuality was a crime,” Carabello says. “If you got caught, you got [beaten] with sticks, belt buckles, metal keychains… It took me a long time to come to terms with my sexuality. I used to feel guilty [about sex].”

As a vocal advocate for himself and others with intellectual and developmental disabilities (ID/DD), Carabello was instrumental in Willowbrook’s closure. His interview in the Willowbrook exposé helped to bring national awareness to the abuses on the grounds, and upon release, Carabello was appointed to a Consumer Advisory Board to monitor conditions at institutions for people with disabilities. Over the years, Carabello has championed the self-advocacy movement, founding the Self-Advocacy Association of New York State and encouraging people with ID/DD to represent their own wants, needs, and rights. Those include the need for services that help people with ID/DD express their sexualities without shame or fear of reprisal.

Nearly half a century after Willowbrook’s closure in 1987, the institutional approach to dealing with the sexuality of people with ID/DD is not so severe in terms of discipline—but in terms of attitude, it hasn’t hugely evolved. Many people with ID/DD still face significant barriers to owning their sexual agency—whether in accessing sex education, obtaining consenting rights in their states, or finding the privacy and freedom to be intimate in crowded group homes.

The issue of ignorance surrounding the sexualities of people with ID/DD is a longstanding one, according to Natalie Chin, Assistant Professor of Clinical Law at Brooklyn Law School and director of The Disability and Civil Rights Clinic: Advocating for Adults with Intellectual and Developmental Disabilities (AAIDD). “This thinking has been going on for decades and decades,” says Chin. “There’s this engrained, fundamental notion that people with ID/DD aren’t sexual.”

During the eugenics movement, a social movement based on selective breeding that gained popularity in America during the first few decades of the 20th century, forced sterilization, marriage bans, and sex-segregated institutionalization became widely accepted tactics for preventing people with ID/DD from having sex and procreating. Today, we know that eugenics was based on faulty science and fears surrounding immigration, and that the “undesirable traits” proponents of eugenics were describing referred to poor and minority populations, who suffered disproportionately under the discriminatory laws spawned by this movement. Forced sterilization was the result of an infamously botched Supreme Court case. But by 1931, 28 states had already legalized it based on those foundations, robbing approximately 64,000 people in the US of the right to reproduce—many of whom were people with ID/DD.

As researchers Carli Friedman and Aleksa L. Owen have found: “Dark histories including North American sterilization policies in the nineteenth and twentieth centuries, and sex-segregated institutional settings served to reinforce the damaging and incorrect assumptions of people with IDD as sexual deviants.”

Part of Chin’s research involves exploring how these assumptions shape group home policies and create what she calls “sexual isolation” for inhabitants. She’s found that group homes across the country have failed “to modify punitive and overprotective policies and provide services related to sex and intimacy.”

Referencing a Minnesota Star Tribune feature that interviewed several residents of a group home that put time limits on intimate encounters and required all visits to be supervised, Chin writes, “In more restrictive instances, a resident’s right to consent to sex may be arbitrarily denied, resulting in a potential lifetime without access to sexuality services or the right to engage in sexual intimacy in their own home.”

According to Chin, one factor driving policies is a desire to protect people with ID/DD from exploitation and abuse.

It’s true that people with ID/DD are disproportionately affected by sexual violence compared to those without a disability. According to Justice Department statistics obtained by NPR and published last year, people with intellectual disabilities are seven times more likely to experience sexual assault than those without disabilities.

But some experts have long been arguing that the statistics surrounding abuse actually prove why sex education for people with ID/DD is so important. In her 1991 Sexuality and People with Intellectual Disabilities: A Historical Perspective, social worker and chief author Winifred Kempton argues that if people are not explicitly taught about sex, they will nonetheless receive an informal sex education based on lifelong social conditioning—and that can lead to ideas about sex that leave them vulnerable to exploitation or prone to inappropriate sexual expression. She adds that sex education is crucial for people with ID/DD, as it is for anyone, in understanding how to properly communicate desires and boundaries to partners and how to be safe while engaging in sexual activity.

The NPR investigation found that the reason for the alarmingly high rate of sexual abuse among people with ID/DD is likely due to several factors, including that such cases are “difficult to win in court,” meaning that many abusers have the ability to abuse again; that because people with ID/DD often rely on caretakers whom they are expected to trust unconditionally, they are frequently put in vulnerable positions; and that “predators target people with intellectual disabilities because they know they are easily manipulated and will have difficulty testifying later.”

The Arc, the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities, however, takes a broader view of the factors contributing to the issue, noting that feelings of powerlessness as a result of living in over-controlled or authoritarian environments and a lack of “experiential opportunities to learn how to develop and use their own intuition” can both worsen circumstances.

Chin agrees. “There’s this notion that if you don’t provide proactive sexuality supports and services, somehow, you are protecting the population,” she says. “In actuality, you are exacerbating [the problem.]”

Sexual education for people with ID/DD does exist, although it’s relatively scarce. And because of fears of abuse and long-standing stigma, what's available is mostly about how to say “no.”

According to Friedman and Owens' research, which counted Medicaid Home and Community-Based Services waivers that permit states to provide community-based services to people with ID/DDs in the US in 2015, only 13 waivers out of 111 (less than 12 percent) from seven states and the District of Columbia offered sexuality-related services in 2017, and 92 percent focused on preventing inappropriate behaviors, while eight percent were deemed “sex-positive,” aimed at providing education and promoting awareness. The study also found that “among the interventions aimed at reducing incidence of sexual offenses, sex-positive services are rarely mentioned in the literature.”

However, a small number of institutions are making strides toward sex-positive education for people with ID/DD. The Young Adult Institute (YAI), a New York–based non-profit agency that provides services to people with intellectual and developmental disabilities, strives to create a sex-positive atmosphere in their residences by providing access to condoms, teaching materials, and a staff trained to connect people to sexuality-affirming resources.

“We were on the forefront as one of the few agencies in the country that provided sex education,” says Connie Senior, a coordinator at YAI responsible for developing sex education curricula. “A part of the agreement to be in a YAI residence is that you are agreeing to sex education.”

When people with ID/DD turn 18, they don’t automatically qualify to give legal sexual consent. Instead, adults with ID/DD must prove to the state that they have the capacity to express or deny sexual consent. One of YAI’s goals is to provide the people they serve with the information to become sexually consenting in the state of New York. “What do I even like in a sweetheart? How do I advocate for what I want; how do I learn the skills that’s needed to be sexually consenting?” Senior says, putting herself in the frame of mind of a sex-curious adult with an ID/DD in describing the questions they try to help residents answer.

There is no national consensus on what a consent assessment should entail, but, in general, a person’s knowledge surrounding the physical and emotional consequences of sex, their ability to engage in a rational process of decision-making, and their understanding of choice all come to bear. Historically, many mental health institutions have assumed a lack of capacity to consent among those they serve, according to a Psychiatric Times overview of consent assessments. To counteract potential implicit bias, YAI trains anybody conducting consent assessments to recognize their own biases, understand how their bias can influence services, and refer to more qualified supports when necessary.

YAI has also developed its own sexual consent assessment that’s used by agencies across the country. It requires the individual to be aware of things like the legality of certain sexual acts and their consequences , how to prevent unwanted pregnancy and STIs, and how to identify and remove themselves from a potentially harmful or exploitative situation, says Senior.

Even for those who are found to be “not consenting,” Senior emphasizes the importance of continuing to educate them. “People may do a consent assessment and they are not consenting. They need education; there's no follow-up to get that education,” Senior says. “That’s where many people fall through the cracks. You don’t just leave the person there.”

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Self-advocates such as Carabello recognize the long road to achieving sexual autonomy. Memories of secluded stays in institutions are hard to shake, and group homes that offer condoms and sexuality-affirming services are still rare. Carabello emphasizes the importance of listening to self-advocates and recognizing a person’s full humanity, including their sexuality.

“I’m glad that they are recognizing people’s sexuality and that people with developmental disabilities have rights,” Carabello says. “They want more freedom. They want to be a part of the process.”

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