In a world where we classify, sort, separate, and stigmatize, it is important to remember that people with all types of disabilities are sexual beings, with the same diversity of sexual desires and interests as people without disabilities. The American Association on Intellectual and Developmental Disabilities puts it this way:
“People with intellectual disabilities and/or developmental disabilities, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected.”
There is an ugly history of forced sterilization and other violations of the sexual and reproductive rights of people with disabilities. “Between 1918 and 1960, when the policy was abolished, 450 residents (of Laconia State School) were sterilized, three-fourths of which were women. For many years, sterilization was a requirement for a resident’s release.”1 Though involuntary sterilization for people with disabilities is no longer commonplace, discussions about the sexual and reproductive rights of people with disabilities are also rare. This lack of information may lead to emotional and physical vulnerability, as well as misinformation and risky sexual behaviors.
It is critical that agencies and service providers promote healthy sexual relationships for the people with disabilities they serve. Service providers must train and support Direct Support Personnel (DSPs) to address sexuality and the sexual needs of the people they support. Sex education and family planning are critical elements of person-centered planning and, yet, they are often omitted.
Having a disability does not equate to a loss of sexuality.
Service providers and DSPs must recognize and understand how their own feelings about sexuality, reproductive justice, and sexual orientation are impacting the people they serve. “…there remains, for the vast majority of people with Intellectual/Developmental Disabilities (I/DD), a major area of deprivation and inequality, a lack of opportunity, choice, and the inherent right to develop and participate in social relationships which may involve sexual expression. The barrier lies not in the inability to develop responsible social and sexual behaviors, but in the misapprehensions and collective negative attitudes of some administrators, professionals, family members and the uninformed general public… The issue is over-control and a denial of basic human rights.”2 Service providers and DSPs must be trained to leave their personal biases at home so that they can support people with disabilities to make their own decisions while providing current, fact-based information around sexual health, contraception, and consent.
Service providers must also consider how their organizational policies and practices help promote or hinder healthy physical relationships. Restrictions on overnight visitors, lack of supports for dates, restrictions on alone time, or lack of privacy in discussions with healthcare professionals are all common policy-based barriers that people with disabilities face. People with disabilities must be allowed to determine the types of physical relationships they want and then be given the supports to make these happen. Instead of policies and practices that prevent healthy relationships, policies should allow sexual relations between consenting adults in the privacy of a bedroom.
Discussions of sex and reproductive health can be uncomfortable, regardless of whether the discussion involves a person with a disability, but service providers and direct support staff must be trained to face these conversations directly. People with disabilities want relationships. Open lines of communication about sexuality and sexual relationships, including information related to same-sex relationships, are critical. Important topics to discuss include:
• Safe sex and reproductive health
• Sexuality and sexual orientation
• How to define healthy relationships
• How to find healthy relationships
These discussions must be presented in a format that is accessible and appropriate to the person with the disability. This might mean using pictures or role play to facilitate the discussions. Without this knowledge, people with disabilities may not be able to recognize unhealthy or negative relationships in order to understand that they deserve better. Discussions of sexual topics must include opportunities for people with disabilities to ask questions and advocate for themselves in confidential spaces without fear of repercussions or stigma.
While family members, guardians, and service providers may help to facilitate these conversations, they can also be a barrier. Conversations with doctors about birth control, sexually
tranmissable infections (STIs), and sexual health should be private unless the person with the disability requests support. The person with the disability should decide who to include in these conversations; discussions with the entire services team (case manager, provider, direct support worker, parents, etc.) without the okay of the person with disabilities are not acceptable.
Adults with disabilities are sexual beings with diverse needs, desires, and interests that must be respected and applauded. Family, agencies, and service providers must broach discussions of sexuality and reproductive health with a willingness to listen and openness to whatever they hear.
Stephanie Patrick is the Executive Director of Disability Rights Center – New Hampshire
2 Ames, R. & Samowitz, P. (1999). Viewpoint [published by AAMR].
Welcome to the newly renamed and redesigned Disability RAPP. The themes explored in each issue, like this issues’ focus on the intersection of disability and sexuality, inform us and empower us to break barriers and challenge traditional ideas of what it means to live with a disability. We updated the Disability RAPP design to be more accessible in both its print and digital formats.
Certain content contains sensitive material which may not be appropriate for all readers.