Adults with intellectual disability : choice and control in the context of family

This chapter about the experience of choice and control by adults with intellectual disability in the family context is offered against the background of the tripartite ecological theory of self-determination (Abery and Stancliffe, A tripartite-ecological theory of self-determination. In Wehmeyer et al. (Eds.), Theory in self-determination: Foundations for educational practice (pp. 43–78). Springfield, IL: Charles C. Thomas, 2003). The challenges in determining readiness for adult decision-making are discussed, as are the experiences of adults with intellectual disability when exercising choice and control within the family context. How families, including parents and siblings, influence decision-making by their family member with intellectual disability is summarized. The critical role of the family in supporting independent choice-making is also highlighted. The chapter ends with a call for research about skills and resources for families to become effective, knowledgeable, and confident supporters of their member with intellectual disability in the quest for adult self-determination

Issues of sexuality and relationships

Sexuality in the lives of people with intellectual disability is almost always conflated with sexual abuse, sexual behaviours, sexual knowledge and questions about capacity to “be” sexual. Rarely is sexuality discussed in a more holistic way that acknowledges pleasure, desire, identity and “self-authored” sexual expression. Writers like Michael Gill (2015) suggested this is due to sexual ableism which he defined as “the system of imbuing sexuality with determinations of qualification to be sexual based on criteria of ability, intellect, morality, physicality, appearance …” (p. 3). Through this lens, sexuality in the lives of people with intellectual disability is mediated by ideas about capacity and competence, assumptions of desirability and overshadowed by a discourse of risk and vulnerability. Foley (2017) reported that underpinning this discourse is a “paternalistic regime” whereby the sexual lives of people with intellectual disability are strongly surveilled, often by parents or other caregivers. He described this regime as being played out where people with intellectual disability, despite their chronological adulthood, “either must ask permission and/or are prevented by their parents from taking control over their social/sexual lives” (p. 6)