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Society for the Social Studies of Science 2019 Annual Meeting

September 4-7, 2019, New Orleans, USA.

Panel: Creative Misfits II – Creating Categories: Disability, Agency, and Identity

Date: Thursday, September 5, 9:45-11:15, Sheraton New Orleans Hotel

Presentation Title: Account/Ability: Disability and Agency in Deep Brain Stimulation

Abstract: Interrogation of the social and material contexts in which biomedical technologies are embedded exposes tensions between personal and social responsibilities, contrasting constructions of disability, and competing models of healthcare. The confluence of the biomedicalization of health care and increasing reliance on emergent biomedical technologies (Clarke et al, 2010), neoliberal individual responsibility (especially as it relates to non-normative, ‘non-productive’ bodies) (Goodley, 2014), and the forceful rhetoric of progress and innovation (Franklin, 1997) produces socio-techno-political environment(s) driven by a curative imaginary (Kafer, 2013) in which bodily and cognitive differences are perceived as deviance and demand intervention. Experiential and embodied expertise can disrupt this imaginary, but are often unacknowledged in healthcare settings and research. Blending critical disability theory and feminist science studies, this presentation will summarize the preliminary findings of an on-going case study into the lived experience of receiving and using deep brain stimulation technologies for Parkinson’s disease. Leveraging qualitative interviews, content analysis of user-directed guidance documents, and digital ethnography of user communities, this study explores how biomedical technologies mediate the meaning of dis/ability, how agency and accountability are distributed across the socio-technical apparatus, and how autonomy and personal responsibility are articulated. Early findings gesture toward the importance of knowledge production in online communities, frustration with epistemic invalidation of embodied and experiential expertise, and perpetuation of conceptions of dis/ability tied to individual failure. This paper contributes to a generative and growing literature at the intersection of dis/ability studies and science and technology studies.