Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Orchard, Treena

Abstract

The purpose of this critical, qualitative study was to explore how adults with mild intellectual disability navigate independent socio-sexual relationships in settings where they are highly dependent upon caregivers and family members who exert significant control over most aspects of their lives. Data were gathered during one-on-one interviews conducted with adults with MID (n=15), and parental caregivers (n=6). Theoretical insights from critical disability studies and sexual citizenship were used to analyze the findings, which are presented thematically by study population. Participants with MID faced challenges to establishing and maintaining meaningful relationships, including a lack of choice about where and how they interact with others, a lack of privacy for intimacy, and not being afforded adequate knowledge of healthy relationships and sexual health by their caregivers. These challenges were directly shaped by the perspectives of caregivers, who perceived their adult children with MID as being inherently vulnerable and in need of their intervention. Their intervention often took the form of paternalistic practices that curtailed the activities and aspirations related to day-to-day life activities, peer-relationships, and sexuality for the adults with MID. These study findings contribute fresh, compelling insights to this important research, especially in relation to the topics of assumed vulnerability, sexual boundaries, sexual violence, and reproduction among adults with MID. The potential impact of these data on disability policies and practices, particularly those that affect the social, spatial, and sexual health of adults with MID are discussed, and recommendations for policy and advocacy are offered.

Summary for Lay Audience

People with mild intellectual disability are entitled to the same rights and freedoms associated with citizenship as people without mild intellectual disability. Even though they are entitled to these same rights and freedoms, people with mild intellectual disability do not always receive them. People with MID have stated that they want more opportunity to develop relationships and sexuality, but this is an area of their lives that they are frequently excluded from. This may be because of their dependence on family and professional caregivers. This dependence is not necessarily a bad thing, but it can create difficulties for adults with MID when they attempt to participate in activities that are thought to be potentially harmful. Caregivers that are depended on sometimes take on a controlling approach towards people with MID in their lives to protect them. These protective measures however, limit adults with MID’s ability to exercise freedom in their lives that other adults are typically allowed to have. The protective measures also create more risk for people with MID as they attempt to make decisions in their social and sexual lives without having the education and support, they may need to do so safely. The goal of this study was to understand how adults with MID navigate these issues while trying to develop meaningful social and sexual relationships, and how these issues may affect their sexual health. The study involved interviews with caregivers including six parents of an adult with MID, and fifteen adults with MID themselves. The findings show that people with MID had to navigate their relationships in very strict parameters set by caregivers and other institutions involved in their care (such as support agencies and government).

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