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People with Intellectual Disabilities Negotiate Autonomy, Gender and Sexuality

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Abstract

Iceland is considered a gender equal country where diversity and human rights are prioritized. However, people with intellectual disabilities seem to be marginalized within Icelandic society, with limited access to resources and opportunities. They have not been viewed as autonomous agents and their abilities to form sexual and gender identities have been questioned, based on the stereotypical views that they are eternal children. The article addresses the manifestation of masculinity, femininity, and autonomy in the lives of Icelanders with intellectual disabilities by employing the concepts of hegemonic masculinity, emphasized femininity, and relational autonomy. Interviews were taken with 29 individuals with intellectual disabilities and participant observations were carried out in the homes of other 15 individuals who had been identified by health/human service professionals as having severe/profound disabilities. Results show that the participants saw themselves as adults and the men who participated in this research performed their autonomy through the construction of hegemonic masculinity. The women seemed to be at more risk of being surveilled and controlled by staff and family members by, for example, restricting activities, pressuring sterilizations, and abortions. The men and the women interviewed relied equally on traditional gender roles in their narratives, although the women resisted emphasized femininity by focusing on independence and abilities in their narratives. We suggest that the structure and practices of the school and support systems have normalized gender/sexuality in the lives of people with intellectual disabilities, thus contributing to their status as eternal children and consequently diminishing their opportunities to develop their autonomy.

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Notes

  1. In this article we use people first language for two reasons. First, historically it has been important for people with intellectual disabilities to emphasize their humanity and by using people first language they avoid being defined by their impairments. Second, people first language is the accepted language of the research participants, is widely used within the research community and preferred by the Icelandic self-advocacy organization for people with intellectual disabilities.

  2. The law in Iceland stipulates that a person can be sterilized if he/she is older than 25 and has given informed consent.

  3. All of the women who talked about sexual harassment and abuse were offered counseling following the interviews.

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  1. School of Education, University of Iceland, v/Stakkahlíð, 108, Reykjavík, Iceland

    Kristín Björnsdóttir, Ástríður Stefánsdóttir & Guðrún Valgerður Stefánsdóttir

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  1. Kristín Björnsdóttir
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Björnsdóttir, K., Stefánsdóttir, Á. & Stefánsdóttir, G.V. People with Intellectual Disabilities Negotiate Autonomy, Gender and Sexuality. Sex Disabil 35, 295–311 (2017). https://doi.org/10.1007/s11195-017-9492-x

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