Account/ability: Disability and Agency in the Age of Biomedicalization

Over the last half century, global healthcare practices have increasingly relied on technological interventions for the detection, prevention, and treatment of disability and disease. As these technologies become routinized and normalized into medicine, the social and political dimensions require substantial consideration. Such consideration is particularly critical in the context of ableism, in which bodily and cognitive differences such as disabilities are perceived as deviance and demand intervention. Further, neoliberalism, with its overwhelming tendency to privatize and individualize, creates conditions under which social systems abdicate responsibility for social issues such as ableism, shifting accountability onto individuals to prevent or mitigate difference through individualized means.

It is in this context that this dissertation, informed by critical disability studies and feminist science and technology studies, examines the understanding and enactment of disability and responsibility in relation to biomedical technologies. I draw from qualitative empirical data from three distinct case studies, each focused on a different biomedical technology: prenatal genetic screening and diagnosis, deep brain stimulation, and do-it-yourself artificial pancreas systems. Analyzing semi-structured interviews and primary documents through an inductive framework that takes up elements of Grounded Theory and hermeneutic phenomenology, this research demonstrates a series of tensions. As disability becomes increasingly associated with discrete biological characteristics and medical professionals claim a growing authority over disabled bodyminds, users of these technologies are caught in a double bind of personal responsibility and epistemic invalidation. Technologies, however, do not occupy either exclusively oppressive or liberatory roles. Rather, they are used with full acknowledgement of their role in perpetuating medical authority and neoliberal paradigms as well as their individual benefit. Experiential and embodied knowledge, particular when in tension with clinical knowledge, is invalidated as a transgression of expert authority. To reject these invalidations, communities cohering around subaltern knowledges emerge in resistance to the mismatched priorities and expectations of medical authority, creating space for alternative disabled imaginaries.