(S)Exploring Disability, PhD Research, University of Warwick (ESRC, 2008-2011)
Bringing together critical disability studies (CDS), sociology, and critical sexuality studies with a range of feminist, queer, post-structural, and postcolonial approaches, my doctoral research explored the complex ways in which disabled people manage and negotiate their sexual and intimate lives, selves, and bodies in the context of dis/ableist cultures where they are, as Brown (1994: 125) states, assigned the paradoxical social categories of ‘asexual, oversexed, innocents, or perverts’. Quite simply, the research traced the intricate ways in which dis/ableism contours sexual and intimate life for disabled people; what these systems of power mean in the context of disabled (hetero)sexual lives; and – most importantly of all – how these “play out” in the material lived lives of disabled people.
Embedded in narrative theory and echoing initiatives found in feminist, anti-racist and, of course, disability research methodologies, the impetus was to facilitate a platform from which disabled people could tell their own sexual stories. Thus, the intention was to situate disabled people’s own voices and lived experiences amongst the myriad of stories already told about their lives by “experts” in order to disrupt the paternalistic, professional, patriarchal, and dis/ableist discourses which routinely pathologise, medicalise and psychologise disabled people’s (sexual) lives and bodies (Shakespeare et al 1996; Siebers 2008). Due to the ways in which “collecting” disabled people’s stories for the purposes of research couldn’t be detached from the ways in which their lives and bodies are routinely objectified, harmed and denied privacy through oppressive social and cultural practices (Sandahl 2003), it was imperative that the research process – how to collect stories, how to treat them and what to do with them – be decided, developed and designed with disabled people. Therefore, the research process was co-managed by a Research Advisory Group (“The Rag”…) made up of local disabled people, and forged relationships with various local and national community-based stakeholders.
The ethics of narrative – of asking (disabled) people to tell intimate and sensitive stories – required an intricate multi-method and multi-format methodology (co-designed with The Rag) which enabled informants to tell their sexual stories through a variety of research methods and alternative formats (in person; writing a journal; via email), including via new social technologies (e.g. MSN; Skype). Coincidentally, it was the materiality of my own impaired body – a body which routinely experiences restricted mobility, fatigue and pain – combined with my deep frustrations of living in an ableist social world which projects and thus perpetuates ‘a corporeal standard’ when it comes to bodies (Campbell 2009: 44), which informed the decision to facilitate data collection methods which were not only accessible, but sensitive to informants’ own bodily experiences and interactions with disabling environments.
To read more about the process of this research, download my article Reflections on the Process of Researching Disabled People’s Sexual Lives from here. Alternatively, to read publications written from the findings from the research, see here. You can watch a short film about the research here.
Update (2018)! My monograph, The Intimate Lives of Disabled People (Routledge), written from this research, is out now! See here for more information.