In 2016, an Australian model with Down Syndrome posed in a bridal shoot, sparking public debate about the propriety of featuring someone with an intellectual disability in a wedding dress. One blogger called a photo of the model, Madeline Stuart, embracing another male model “grotesque’. This blogger further complained that coverage of Stuart’s modeling gave “the impression of fully fledged freedom, a sentient awareness about what she embarks upon.” He claimed, “when the model speaks, and the mask comes off, we are left with a traditional individual with desires in need of care.”
This refusal to acknowledge intellectually disabled persons’ right to romance and sexual expression came to light again in 2016, when comedian Gary Owen joked about learning that his cousin, whom he described as “retarded,” was having sex. Incidents like these reveal that, despite a long and arduous struggle for autonomy, many people with intellectual disability are still denied full-fledged personhood.
In the first half of the twentieth century, intellectually disabled or “feebleminded” persons in the United States were sterilized in an effort to prevent “undesirable traits” from being passed on through reproduction. Far from being a radical concept or practice, eugenics was widely supported in those early decades. Leading scientists and medical experts campaigned for programs to prevent the “unfit” from reproducing, and their policies were supported by laws and court decisions such as Buck v. Bell in 1927, in which the Supreme Court ruled that the state of Virginia could sterilize a young mother who was determined to have low intelligence. In his majority opinion, Chief Justice Oliver Wendell Holmes wrote, “Three generations of imbeciles are enough.”
Until the 1950s, the majority of individuals with moderate to severe intellectual disabilities were institutionalized from childhood. There was no expectation of a normal life within the walls of an institution, and an individual’s choice was not prioritized. Instead of acknowledging love and intimacy as a basic right, medical authorities discouraged any expression of sexuality. In some cases, the denial of individuals’ rights was based on paternalist notions of safeguarding, as if individuals should remain in a childlike state their entire lives.
There has long been a dichotomy of thinking about intellectually disabled persons. At one extreme, people with intellectual disabilities are characterized as overly sexualized. This is especially true of men, who are portrayed as dangerous, incapable of understanding or controlling their desires, or their physical strength. (This trope was captured perfectly in the fictitious Lenny in John Steinbeck’s Of Mice and Men.) At the other extreme, people with intellectual disabilities are viewed as asexual and aromantic. Cognitive ability is confounded with a lack of feeling, and lawmakers, medical professionals, and the general public fail to appreciate that intellectually disabled individuals both desire and are capable of loving relationships.
“There has long been a dichotomy of thinking about intellectually disabled persons. At one extreme, these individuals are characterized as overly sexualized, dangerous, incapable of understanding or controlling their desires and physical strength… At the other, they are viewed as asexual and aromantic.”
As Leslie Walker-Hirsch, a sex educator at the University of New Mexico, recently told Broadly, “People get uncomfortable seeing individuals with disabilities expressing their sexuality, because the perception is that these are not perfect people.”
These attitudes are being challenged by the American Association on Intellectual and Developmental Disabilities, which proclaims that every person has an inherent right to self-determination. The organization makes clear that individuals’ rights to romance and sexual expression should be “affirmed, defended, and respected.” Negative attitudes are also being challenged by people who have intellectual disabilities themselves, many of whom fight for the right to pursue romantic relationships, often, but not exclusively, with the support of their families and support staff. This position stands in opposition to confusing state laws, which cite ‘mental defectiveness’ as a potential barrier to consent without adequately spelling out their definition of lawful consent. It also stands in opposition to coerced sterilization and to laws in California, Connecticut, Iowa, and other states that bar people deemed “idiots,” “imbeciles,” and “lunatics” from getting married.
In short, the organizations and advocates of the community stress that intellectual disability does not necessarily preclude the ability to enter into relationships, consent to sex, or become a parent. The label “intellectual disability” can describe a range of conditions, such as Down Syndrome, Developmental Delay, or Fetal Alcohol Spectrum Disorder. Significant differences in cognitive ability can exist among individuals with the same diagnosis. While some individuals may not be able to consent to sexual aspects of relationships, many others have the capacity to do so. And even if an individual doesn’t have the capacity to consent to sex, other aspects of romantic relationships remain a possibility. After all, cognitive ability doesn’t determine the extent to which a person experiences emotions, and a person with intellectual disability is just as capable of loving a partner as any member of society.
Of course, questions over the capacity for consent can be thorny. Care providers and support staff have a duty of care towards individuals with intellectual disability, and this should guide the extent of their input into decision making. One way they can support individuals with disabilities is simply by providing access to information about sex, relationships, and reproductive health. In addition, care providers can teach individuals to recognize and feel confident in reporting abuse.
In the past, I worked at an organization in the UK that provided courses for individuals with intellectual disability. In this role, despite some parental support, I often heard from parents that their son or daughter wasn’t interested in relationships or sex. When these topics were raised with the individuals, It was often met with embarrassment. In many cases, it was the first time anyone had ever openly spoken to them about sex. They thought it was wrong to talk about intimate matters, despite the fact that they were sexually active.
Academic research suggests the importance of comprehensive education when it comes to this topic. In other words, there need to be resources about anatomy, reproductive health, legal rights, relationships, and more. Furthermore, there need to be resources for individuals, parents, carers, and support staff so that an individual’s learning is not isolated to any single sphere of their lives.
Yet even with these resources, there are barriers to love and intimacy for people with intellectual disabilities. A lack of privacy, born of living in the family or group homes, can leave people with limited opportunities for intimacy. And a lack of income may mean that access to social activities within the disability community is limited. These realities are especially felt by individuals who “age out” of state provisions.
So, the struggle is far from over. What individuals truly need is a society and support network that values the need for sexual and romantic expression. Only when we begin to see individuals with intellectual disabilities as full human beings, deserving of the range of human experiences, can we redress the significant disadvantage that these persons face in the world of love, sex, and relationships.
Disclaimer: The term “intellectual disability” has been used throughout this essay as it is currently the most widely used term in America, and is therefore easily understandable to the reader. However, the author is aware that ‘disability’ is a contested term, and that many compelling arguments against using this word exist. The author apologizes for any offense this terminology may cause.