Doing the Wild Thing: Supporting an Ordinary Sexual Life for People with Intellectual Disabilities

Abstract

For many people who are called disabled, having this label means to be excluded from the experience of 'an ordinary sexual life'. For those who are called intellectually disabled exclusion from experiences of any kind of positive sexual life is almost universal. This article explores how some people with intellectual disabilities have sought to open up pathways towards accessing experiences of sexual expression as a way to move forward towards being able to integrate a concept of sexuality into their lives. Two support workers are interviewed. Both are employed by a Human Services organization in Aotearoa, New Zealand, which provides long term support for people with intellectual disabilities. Their comments reveal that access to successful instances of sexual expression for people in this group are currently only available those who are articulate enough and persistent enough to keep trying until they succeed. Barriers to success are isolated and some wider issues surrounding what changes might positively affect this group are discussed.

Disabilities and sexual expression: A review of the literature

“…Block et al () offer sexual facilitation as another example of how disabled sexuality can challenge conventional ideas regarding sex, pleasure, and intimacy. Defined by Block et al as “assistance with a sexual activity provided to a disabled client by a personal assistant or other provider,” sexual facilitation can include assistance with a variety of sexual or romantic acts including, “positioning the disabled person for masturbation or for sex with a partner, helping her or him undress, assisting with stimulation, transferring them to a bed or couch, transporting them to a partner's residence, purchasing condoms, or providing reminders about using birth control” (Block et al, , p. 166; see also Earle, ; Hamilton, ; Kulick & Rydström, ; Mona, ; Shapiro, ; Tepper, ; Willock, ). Several scholars detail how forms of facilitated sex “transgress the cultural view of sex as private and as an autonomous project of the self,” and note that depending on the socio‐legal context, people who assist disabled people with sexual activities may be at risk of legal and social ramifications (Block et al, , p. 166; see also Fritsch, Heynen, Ross, & van der Meulen, ; Kulick & Rydström, ; Mona, ; Shildrick, ).…”

“…Additional research involving people with “significant” impairments is important, because as Kulick and Rydström note that these individuals are often “the ones who need the most help in exploring their sexuality” (Kulick & Rydström, , p. 3). Although research involving people with intellectual disabilities and people with no mobility and/or little verbal speech is increasing (see Fish, ; Hamilton, ; Kulick & Rydström, ; Löfgren‐Mårtenson, , ; Shuttleworth, ; Turner & Crane, ), this tendency has left people with these types of impairments relatively under‐studied when compared to people with other impairments (Block et al, ; Martino, ; Noonan & Gomez, ). Unfortunately, this gap within the literature obfuscates the complexity of intersectional experiences of discrimination that people with disabilities face when exploring and expressing their sexuality, as well as their positive and pleasurable experiences.…”

“…Block et al (2012) offer sexual facilitation as another example of how disabled sexuality can challenge conventional ideas regarding sex, pleasure, and intimacy. Defined by Block et al as "assistance with a sexual activity provided to a disabled client by a personal assistant or other provider," sexual facilitation can include assistance with a variety of sexual or romantic acts including, "positioning the disabled person for masturbation or for sex with a partner, helping her or him undress, assisting with stimulation, transferring them to a bed or couch, transporting them to a partner 0 s residence, purchasing condoms, or providing reminders about using birth control" (Block et al, 2012, p. 166; see also Earle, 2001;Hamilton, 2002;Kulick & Rydström, 2015;Mona, 2003;Shapiro, 2002;Tepper, 2000;Willock, 2013).…”

“…A significant portion of recent literature regarding sexual activity and expression explores how to uphold the sexual rights of people with disabilities and how to enhance disabled people 0 s opportunities for sexual access (Bahner, 2012;Fritsch et al, 2016;Hamilton, 2002;Kangaude, 2007;Kulick & Rydström, 2015;Sanders, 2007;Shakespeare, 2014;Shuttleworth & Mona, 2002;Shuttleworth & Sanders, 2010). In doing so, this literature has identified a variety of campaigns, policy contexts, spaces, and groups dedicated to supporting the sexual rights and expression of disabled people (see Fritsch et al, 2016;Liddiard, 2014;Shakespeare, 2014;Shakespeare et al, 1996).…”

“…Some of the most challenging and persistent barriers to the sexual expression of people with disabilities are the attitudes that non-disabled people often hold regarding the sexual experiences of disabled people (Kulick & Rydström, 2015;Shakespeare, 2014;Shuttleworth & Sanders, 2010). A significant portion of literature concerning disability and sexuality has examined attitudes towards disability and sexuality, particularly attitudes held by those who work with and care for people with disabilities (e.g., personal attendants, medical professionals, and parents of disabled children; see Addlakha, 2007;Cuskelly & Bryde, 2004;Deal, 2003;DeLoach, 1994;Desjardins, 2012;Esmail, Darry, Walter, & Knupp, 2010;Gilmore & Chambers, 2010;Hamilton, 2002;Kaufman et al, 2007;Kulick & Rydström, 2015;Lewiecki-Wilson, 2011;Pebdani, 2016). Inquiry into this topic has led to the identification of a range of stereotypes that label disabled people as infantilized asexual innocents in need of protection, as undesirable partners, as unfit or unable to have sex or children, and as deviant if they do engage in sexual relations (Abu-Habib, 1995;Brodwin & Frederic, 2010;Esmail et al, 2010;Malacrida, 2007;McRuer & Mollow, 2012;Olkin, 1999;Parchomiuk, 2014;Prillentsky, 2003;Shakespeare et al, 1996;Shuttleworth & Dune, 2009).…”