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Ethics and Politics of Caring and Curing: The Case of Down Syndrome and Alzheimer Disease

  • Author(s): Pohlman, Elizabeth Grace
  • Advisor(s): Fox, Patrick J
  • et al.
Abstract

This anthropological project investigates the confluence of social advocacy, science, and medicine as it relates to cognitive difference or disability for two conditions: Down Syndrome and Alzheimer's Disease. Grounded in multi-sited ethnographic methods, this research includes observation and interview in laboratory and clinic, conference, workshop, residential, advocacy, fundraising, and legislative sites.

This dissertation tells two stories. The first details the emergence of cognitive enhancement for individuals with Down Syndrome. This is a relatively new endeavor for scientific study that is growing from within research on Alzheimer's Disease and its genetic risk factors. As advocates contemplate the possibility of cognitive enhancement through pharmaceutical means, their encounter with ethical concerns poses novel predicaments, potentially altering an advocacy politics previously devoted to care and change in cultural attitudes towards Down Syndrome. Drawn into this narrative is the unique pressure that prenatal testing and abortion represent in the lives of those living under the description of Down Syndrome.

The second narrative tracks new representations of Alzheimer's Disease, made possible through the activities of science and medicine and resulting from diagnosing Alzheimer's Disease at its earlier stages. This shift has led not only to the creation of more patients, and more subjects for research, but also the possibility that individuals diagnosed with Alzheimer's Disease might represent themselves publicly. This is a sea change in the advocacy movement associated with the disease, and also carries the potential to alter advocacy politics and its commitments to curing disease.

This dissertation details the paths advocates are arguing and practicing in their pursuit of recognition and justice in these two scenes of advocacy. I explore their interactions with science and medicine, and with scientists and medical doctors. This work is important because it illuminates the continuing power of normality and competence in everyday life, and the pressures it brings to bear on those caught in its crosshairs, individuals living under descriptions associated with abnormality and incompetence.

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