Biosociality Without Biomarkers: Impairment, Fatigue, and the Making of a Contested Diagnosis

• In Event: Bad Queers, Bold Crips, and Black Femmes - I: Disability Politics and Cripping Biomedicine

Abstract

This paper examines the incomplete medicalization of chronic fatigue syndrome (CFS) by considering how biosocialities form around contested diagnoses and among disabled bodies. Medicalization has been an important paradigm in both disability studies and STS, foundational to medical sociological critiques of medical “social control” and to the “social model” of disability (Zola 1978; Shakespeare 1998). A “strong social model” has meant the sidelining of the phenomenon of impairment, or an emphasis on social determinants of what can count as a medical problem. Recently scholars have turned toward the “new realism of the body” (Siebers 2001) or the concept of “debility” (Livingston 2005) to bridge together the constructedness of disability with the reality of bodily impairment. This paper presents preliminary results from a three-year ethnographic study of U.S. CFS patient-activists and theorizes the potential of impairment not only as “bodily reality,” but also as an embodied resource for generating lay socialities and activism; fatigue becomes both the basis and the obstacle for making claims to governmental and medical authorities that bestow legitimacy and gatekeep care. I consider the significance of biosociality among the “unhealthily disabled” and chronically ill (Wendell 2001), particularly among those living with diagnoses for which there are no agreed upon biomarkers. Here, impairment and “symptom talk,” even if discussed in highly biomedicalized terms, become central to patient mobilization and advocacy rather than the after-effects of therapeutic normalization. This paper bridges STS and disability studies by theorizing debility as central to the emergence of a contested scientific object.

Author

• Emily Rogers, New York University