Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Sexuality and Disability History:
Societal Perceptions and Responses
Society has historically treated people with intellectual and developmental disabilities (IDD) very badly when it comes to their rights to have sex, to have children, to marry, and to have intimate relationships. They have been prevented from having sex and have been punished for sexual behavior. In the early 1900s, laws prohibited people with disabilities from marrying. Although many of these laws were changed, some of them are still in place. In the early 20th century, a set of beliefs called eugenics was used to try to keep people with disabilities from having children. There was even a U.S. Supreme Court case that allowed states to perform medical procedures on them to make them sterile, or unable to produce children. When states closed a lot of institutions in the 1970s, doctors and nurses taught families how to teach their children with disabilities about puberty and avoiding pregnancy, but they didn’t think about them growing into adults who would want to have sex. Schools started recognizing the need for education about sexually transmitted diseases in the 1980s, and have been teaching for decades about saying “no,” and understanding and preventing abuse. Today, the professional literature is starting to focus on freedom and removing barriers to healthy, intimate relationships, and on the importance of the individual choices and desires of people with IDD. Hopefully, we are entering a time when the importance of sexual pleasure and freedom is recognized, along with risks and difficulties.
Society has historically viewed people with intellectual and developmental disabilities (IDD) as sexual deviants, sexual aggressors, or asexual children. The societal response to those with IDD has been to ignore, prevent, or punish their sexual behavior. In the early 1900s, laws prohibited people with disabilities from marrying. Although many of these laws were repealed, some remain on the books , as noted by Dominick Evans in a 2023 blog post for the Center for Disability Rights. “Removing [them] has been argued against, because some members of the government seem to believe that it is protecting people with disabilities who they deem as unable to make their own decisions,” Evans wrote. To examine the present state of affairs, we must look to patterns in the past.
Sterilization and Segregation: A Deviance Model
At the heart of the restrictive marriage laws of the early 20th century was eugenics, the set of beliefs and practices that aimed to exclude people deemed unfit to reproduce from having children. Many scientists, politicians, and public figures of the day, however, believed that laws forbidding those deemed unfit to marry did not achieve the desired result of preventing procreation. Thus, the eugenics movement, or the idea of selectively breeding humans to improve the species, gained momentum. In the book Three Generations, No Imbeciles: Eugenics, The Supreme Court, and Buck v. Bell, Paul Lombardo asserts that state sterilization laws were enacted to prevent people with disabilities from reproducing. Oliver Wendell Holmes, a Supreme Court Justice in the 1927 Buck v. Bell case, upheld states’ rights to employ involuntary sterilization. Holmes argued that the welfare of society might be promoted by sterilization of “mental defectives” who, if discharged from institutions, would become “a menace, but if incapable of procreating, might be and become self-supporting with benefit to themselves and to society”. The Eugenics Archive stated that following Buck v. Bell, 30 states added new or updated sterilization laws , under which an estimated 65,000 Americans were sterilized without their own consent or that of a family member. Imagine the stigma and shame sent by the message, “We do not want people like you in our midst.”
Not only were involuntary sterilization laws passed, but institutions were established where people with IDD could be segregated from the rest of society. More than two decades before Buck v. Bell, Walter Fernald, superintendent of the Experimental School for Teaching and Training Idiotic Children, wrote in the Proceedings of the National Conference of Charities and Correction:
“It is well known that feeble-minded women and girls are very liable to become sources of unspeakable debauchery and licentiousness, which pollutes the whole life of the young boys and youth of the community. They frequently disseminate in a wholesale way the most loathsome and deadly diseases, permanently poisoning the minds and bodies of thoughtless youth at the very threshold of manhood. Almost every country town has one or more of these defective women each having from one to four or more illegitimate children, every one of whom is predestined to be defective mentally, criminal, or an outcast of some sort.”
Carrie Buck (left) and her birth mother, Emma Buck, at the Virginia State Colony for Epileptics and Feebleminded, 1924.
Women with disabilities were viewed as temptresses of young men; men with disabilities were viewed as violators of young women; and both were perceived to have deviant behavior. As the number of institutions and those institutionalized grew, conditions deteriorated. Locked doors and barred windows, lack of privacy, and mass showering and toileting were common. In addition, institutions used children and adults as human guinea pigs without their consent in medical research.
Thus, a deviance model of people with IDD prevailed until the 1970s, when the deplorable conditions of state institutions were revealed and the deinstitutionalization movement began. What may be equally, if not more harmful than segregation itself, is how these restrictive actions could lead to internalized stigma, the negative self-attitudes and beliefs by those with IDD themselves.
Community Integration: A Medical Model
The sexual revolution and Civil Rights Movement of the 1960s inspired social change. Intense advocacy by parents to improve services for their children, along with media exposés showing the deplorable conditions of institutions such as Pennhurst and Willowbrook, ushered in the movement to close public institutions for people with IDD. With deinstitutionalization, sexuality became a family issue, with medical personnel as the experts. Doctors and nurses were the sources of information, and families were to be the trainers. Professional literature from this time focuses on teaching parents and caregivers to manage the physical aspects of maturation, sexual health, and pregnancy prevention. Parents were tasked with teaching about sexual hygiene. Intimate relationships, or one’s identity as a sexual being, were not widespread topics of discussion; instead, people with IDD were thought of as asexual or sexually immature, like children. Articles with titles such as “Puberty in the Girl Who is Retarded,” in 1969, and “Attitudes of Parents of Deficient Children Toward Their Child’s Sexual Behavior,” in 1970, were common in the professional literature. Unfortunately, the presumed asexuality by families and physicians could have contributed to a self-fulfilling prophecy for many individuals with IDD, leading them to retreat from developing intimate relationships.
Prevention: A Public Health and Education Model
In the 1980s, curriculum guides written by agencies and school districts demonstrated a shift in acknowledging the role of social institutions in providing sex education for individuals with IDD. Although this education extended beyond the physical aspects of maturation, a cloud of fear hung over the instruction. Much of the professional literature focused on preventing abuse and sexually transmitted diseases, particularly HIV. Raymond Jacobs and colleagues from the Young Adult Institute in New York published works outlining prevention education programs . Articles appeared in public health sources instead of medical journals. In schools, health and home economics education classes were teaching sex education, but many individuals with IDD were not included because they were still in segregated special education classrooms. Advocates argued that education about HIV and pregnancy prevention, available for students without disabilities, should be made accessible for those with IDD. One especially progressive article by Lous Heshusius was titled “Sexuality, intimacy, and persons we label mentally retarded: What they think—what we think ”. Although the perspectives of those with IDD were solicited, even the title demonstrates the “othering” mentality (us vs. them) of the times.
During the 1990s, there was a strong push for the right to sex education. Sex education for students with IDD was discussed as a school responsibility, and adult service agencies recognized their responsibility to provide education. In a 2021 article, Rebecca Kammes and I found that in sex education for people with IDD, there was a focus on interventions such as behavioral skills training, refusal skills, and understanding, preventing, and reporting abuse. The professional literature contained studies about teaching adults with IDD personal safety skills such as, “No, Go, Yell, and Tell.” No interventions focused on moving from friendship to a romantic relationship, teaching how to be a good partner, or consenting to sexual activity.
Emancipation and Facilitation: A Social Model
Emancipation is the act of freeing one person or group of people from the control of another. Since 2000, the professional literature has focused much more on freedom from control and reducing barriers for those with IDD to have healthy intimate relationships. The field now considers the importance of the individual choices and desires of people with IDD. Writing in the Developmental Disabilities Bulletin, Deborah Richards and colleagues report that the field is recognizing the right of people with disabilities to live with, work with, and love people of both sexes. Focusing on education and empowerment in the context of the social model of disability has framed conversations and service provision. In the social model, disability does not lie within the individual; it results from societal oppression, discrimination, marginalization, and barriers. Intersectionality is recognized, and disability is seen as only one aspect of a person’s life. Thus, gender and sexual identity may be more fully explored. By 2000, the professional literature began focusing on teaching individuals with IDD to build healthy relationships, moving the focus from people with IDD being patients to being romantic partners. Common themes in the research literature have been (a) facilitating development of healthy friendships and intimate relationships, (b) the importance of relationships in quality of life, (c) sexual identity, and (d) functioning as a sexual being. Also, since 2000, more research has included the voices of people with IDD. Parent involvement in sex education became qualitatively different, focusing on dating and intimate relationships rather than solely on puberty and sexual hygiene. There has been much less focus on intervention and treatment, and more on understanding and removing barriers. People with IDD became partners in the research process.
Full Participation: Moving Forward, A Positive Sexuality Model
Deborah Richards and colleagues have discussed how society has evolved beyond sexually segregated institutions, mass involuntary sterilization, and misconceptions of people with disabilities as sexually deviant and crazed. Although attitudes and practices regarding sexuality for individuals with IDD have progressed, the field still has much to do. Today, marriage discrimination remains; people with disabilities may lose Social Security and Medicaid benefits if they marry. The Supplemental Security Income Restoration Act was introduced to Congress in 2021 to address outdated Social Security restrictions, but it did not receive a vote. In 2022, the Marriage Equality for Disabled Adults Act was introduced and again died in Congress, not receiving a vote. These acts intend to reduce the financial penalties for individuals with disabilities who choose to marry. Moving forward, we want to see equality and respect for all people, including the freedom to love and to marry.
Much of the research literature still focuses on heterosexual relationships. For many individuals with IDD, families and professionals continue to separate males and females, prevent them from seeing someone they are interested in romantically, and hover so closely that they have no privacy or opportunity to form an intimate relationship. Professionals often report “problem behavior” when adolescents or adults with IDD express affection to one another. A National Public Radio series reported that people with IDD are sexually assaulted at seven times the rate of the general population .
Nevertheless, as we move forward, I believe we are entering an era of full participation. Children and adults with IDD will receive inclusive, comprehensive sex education. More often, adults with IDD participate in research by telling their stories, and by being partners and co-researchers in sexuality and healthy relationship studies. Young adults and adults are becoming peer trainers in sex education programs. Young adults and adults are beginning to express their gender and sexual identity and have supportive families and communities listening to their stories and struggles. My hope is that this new era of full participation adopts a positive sexuality model , as described by Monika Parchomiuk. The model recognizes the importance of sexual pleasure and freedom, but it does not overlook risks and difficulties. This model, and my hope for the future, includes considering the strengths and uniqueness of each person’s sexuality, and using these strengths to solve problems and experience happiness, and to develop their sexuality and sexual expression. It is also my hope that sexuality and intimate relationships will be seen as positive aspects of personal development and supported in the same ways as competitive employment and community participation. Families and agencies will see relationships, both friendships and romantic relationships, as vital to quality of life and necessary when planning for how best to support all people, those with and without disabilities.