Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Supporting the Whole Person:
The Case for Educating Caregivers
There is a lack of training for paid and natural caregivers to learn about supporting the sexuality and gender identity of people with disabilities. This makes it very hard for people with disabilities to develop meaningful, intimate relationships and express themselves fully. Research says that all people, including those with intellectual and/or developmental disabilities (IDD), benefit from opportunities to build social networks and form intimate relationships. Living without them can be as unhealthy as smoking and obesity, one study found. Research also shows that caregivers have a big influence on the people they support, so it is important that caregivers provide resources and let the people they support know they have a right to romantic relationships and to explore their identities. In keeping with “Nothing About Us Without Us,” training and resources must include the voices of people with a wide spectrum of disabilities. They must focus on holistic and comprehensive sex education, rather than only focusing on risk avoidance. They need to include a variety of gender identities, sexual orientations, and cultural backgrounds. Employers of paid staff need to make sure that support staff know how to talk about sexuality and create an open environment that allows for people with IDD to have the experiences they want. Paid support staff also need to understand the difference between their personal values and what they need to do at work. They need help to learn how to build social skills as the people they support pursue relationships. People with disabilities themselves, caregivers, and service providers all need to work together so that people with disabilities have healthy relationships and identities of their choosing.
There has been progress in recognizing the sexual and relationship rights of people with IDD in recent years, thanks to the activism of self-advocates, parents, professionals, and researchers. Sexual health and healthy relationship education training, curricula, and resources are now in use in several states, and reports like Comprehensive Sex Ed for Youth With Disabilities: A Call to Action have called attention to the need for positive sexuality supports. Much of the focus has been on delivering education to individuals with IDD. A more collaborative approach would include training paid and natural caregivers, who are important social gatekeepers in supporting the sexual and relationship rights of people with IDD. Training on how to provide positive social-sexual supports is still lacking from most basic training requirements for many paid caregivers. Parents and natural caregivers have to seek out trainings specifically tailored to their roles, and programs are not widely available.
The lack of training among caregivers can hinder sexual expression and freedoms for people with IDD. Many myths and misconceptions surrounding the needs, desires, and rights of people with IDD regarding meaningful relationships have developed over time based on outdated prejudices, and caregivers and staff can play a role as challengers or facilitators of these myths and prejudices. In a 2001 study published in the journal Sexuality and Disability, researchers found intellectual disability does not affect the human desire for social connection , love, affection, and intimacy and people with IDD have similar needs, desires, and rights as the general population. Research supports the notion that all people, including those with IDD, benefit from opportunities to increase social networks and form intimate relationships. Conversely, the lack of significant social relationships has been shown to be as detrimental to health as smoking , high blood pressure, and obesity, as noted in a 1988 study published in Science.
Research has demonstrated that the attitudes of the public and of caregivers on the sexuality and gender identity of people with IDD have significant influence on the opinions, attitudes, and experiences of people with IDD and are critical in providing successful supports for individuals to develop meaningful relationships and healthy identities. Caregivers can benefit from accessing resources early in a child’s life that emphasize the right to have social and romantic relationships and to explore their gender identities.
Programs such as the Sexual Self-Determination Training and Certification program , developed by Among Friends, an Oregon provider agency, aim to train caregivers, providers, and other staff to provide social sexual supports to people with IDD. The goal of the program is to increase the number of caregivers and agency staff who are providing social sexual supports to people with IDD, as well as to increase the number of trainers. Elevatus, an agency that provides training in a sexual health curriculum specifically designed for the IDD population, also provides self-study courses for parents and staff.
Resources that take a human rights-based approach to teaching caregivers about sexuality and gender identity in disability culture can help shift attitudes and stigma that create barriers to forming and maintaining relationships. Given the historic mistreatment of people with IDD and infringement on their relationship rights, these resources acknowledge them as sexual beings. One example is Sins Invalid , a disability justice performance project. The organization’s website says it “centralizes artists of color and LGBTQ/gender variant artists as communities who have been historically marginalized” and offers “a vision of beauty and sexuality inclusive of all bodies and communities.”
In keeping with “Nothing About Us Without Us,” training and resources also must include the voices of people with a wide spectrum of disabilities. For example, as part of the Sex Talk for Self-Advocates webinar series, the Association of University Centers on Disabilities’ (AUCD) Sexual Health Special Interest Group (SIG) collaborated with self-advocates and health educators to provide information on various topics, such as sexually transmitted infections, pregnancy and parenting, and LGBTQ+ identities. Self-advocates served as facilitators and panelists, who shared their lived experience as experts in their own lives. The series focused on holistic and comprehensive sex education, rather than only focusing on risk avoidance. While safety and abuse prevention are important topics to address as rates of sexual violence are higher among people with IDD than the general population, resources should avoid only focusing on prevention and should include information that teaches people how to have safe and healthy relationships. People with IDD also need resources that affirm a variety of gender identities, sexual orientations, and cultural backgrounds.
Parents and other caregivers need resources to help them provide and encourage opportunities for forming meaningful relationships, facilitate access to sexual health information and services, and advocate for removing systemic barriers that prevent people with disabilities from living their true identities. People with disabilities may need resources to help them advocate for their sexuality and gender expression rights, and professionals need resources to better address sexuality with an individual with IDD.
Resources for paid support staff may come in the form of policies and guidance from their employers that clarify staff’s role in supporting social, romantic, and sexual interaction. These policies, in combination with training for staff in having conversations about sexuality, are essential supports that create an open environment for people with IDD to have their desired experiences when it comes to sexuality. Paid support staff also need resources that clarify the difference between personal and professional values. Because staff are often in a role of providing skill-building opportunities for the people they support, they can benefit from access to educational resources to teach social skills in a way that meets their clients’ needs. People with IDD can also benefit from spending time with other adults who can model, facilitate, and support positive development of meaningful relationships and can benefit from having staff who are trained to provide this modeling. Planned Parenthood of Greater New York’s Organizational Capacity Building Program, for example, trains organizations to improve sexual and reproductive health outreach and support. Oregon’s Multnomah County Health Department adapted and implemented a sexual health equity project for people with IDD. We must employ the full network of support – people with disabilities themselves, caregivers, and service providers – in a collaboration to actively promote healthy sexuality and gender identity.
AUCD Sexual Health Special Interest Group
The authors co-chair the Association of University Centers on Disabilities (AUCD) Sexual Health and Disability Special Interest Group (SIG). The group maintains an electronic mailing list of 245 members from across the AUCD network and non-university community at large who are passionate about sexuality and disability. The SIG conducts quarterly meetings to serve as a forum for researchers, disability professionals, and self-advocates to connect and share resources. The SIG also serves as a platform for sharing important work being done in the field of sexuality and disability.
The SIG actively works to elevate the voices of self-advocates who speak, teach, and train on ways to support sexual health and healthy relationship education. As part of the “Sex Talk for Self-Advocates ” webinar series, the SIG collaborated with self-advocates and health educators to provide information on various topics, such as sexually transmitted infections, pregnancy, and parenting, and LGBTQ+ identities. Self-advocates served as facilitators and panelists, who shared their lived experience as experts in their own lives.
“It is important for people with disabilities to talk about sex and sexuality,” Thelma Green said after serving as a panelist. “They won’t know as much [about sex] because people aren’t talking to them, and that’s not right. And, you know what? People are going to have sex anyway, so—they might [feel as if they] have to sneak in places like bathrooms. If no one is talking to them or telling them right from wrong, they don’t know what to do. That is dangerous.”
Anyone with an interest in sexuality and disability can become a member of the SIG by signing up for the Listserv.
Photo courtesy of Disabled and Here.