"I'm Worthy of Having Experiences Just like Everybody Else": Exploring Sexual Well-Being Among Young Disabled People

Background and Purpose: Sexual well-being is an integral part of human well-being and a marker of health equity alongside sexual health, sexual justice, and sexual pleasure. Disabled people experience disproportionate inequities related to sexual well-being through stigma and discrimination, stereotypes and biases, inaccessibility, increased risk of severe maternal morbidity, and poorer preconception health. Societal misconceptions of disabled bodies as non-normative and deviant are particularly harmful, as these discourses promote barriers to sexual citizenship and disabled people’s understanding of themselves as sexual beings.

Sex-positive frameworks promote sexual health and well-being and increase young people’s capability to make sexually healthy and self-confident decisions. However, positive aspects of sexuality remain understudied among young disabled people, and there is a lack of consensus on conceptualizing different aspects of healthy adolescent sexuality development to guide programs, research, and policy. This paper helps to fill this gap by exploring the meanings and conceptualizations of sexual well-being among young disabled people.

Methods: Twenty-four in-depth, semi-structured interviews were conducted with young people (ages 17 to 24) who self-identify as disabled and have previous experience with a social worker. Examples of disabilities include developmental disabilities (e.g., learning disability), physical disabilities (e.g., cystic fibrosis, cerebral palsy, Multiple Sclerosis), neurodiversity (e.g., Autism, ADHD), and mental health (e.g., schizophrenia, bipolar disorder, depression, anxiety). Most participants (88%) identified having more than one disability. Many participants self-identified as part of a sexual minority (75%) and gender minority (50%). Over half of the participants self-identified as White (58%), nearly one-quarter as Indigenous (21%), a small number as Black (8%) and Middle Eastern (8%), and one participant as Asian (4%).

Participants were recruited via social media and snowball sampling. Participants were asked to discuss how they conceptualize sexual well-being, how their meanings of sexual well-being have changed over time, and how disability impacts sexual well-being in their lives. Interviews were transcribed and coded thematically using NVivo qualitative software, guided by the analysis principles of Interpretative Phenomenological Analysis.

Results: Participants shaped their meanings of sexual well-being using a sex-positive perspective. For many participants, it was clear that their attitudes towards sexual well-being changed over time, influenced by their lived experiences. Many discussed how they were negatively impacted by sexuality education in school, providing examples of ableist content and exclusion. Participants provided insights into how the desexualization of disabled people impacted their sexual well-being by perpetuating internalized ableism and shame. Many experienced ongoing struggles with internalized ableism, and it was challenging to demarginalize themselves from this oppressive experience. The negative impact of internalized ableism on achieving sexual well-being was ongoing. This was clear in participants’ expectations of themselves and others, often feeling the need to accommodate others or feeling unworthy of achieving sexual well-being. Lastly, It was evident that sexual well-being required additional “costs,” especially related to planning and accessing resources.

Conclusions and Implications: The findings highlight the unique experiences of disabled young people with sexual well-being and the importance of designing, delivering, and implementing anti-ableist services and education that are accessible and suitable for disabled young people.