“We don't wear it on our sleeve”: Sickle cell disease and the (in)visibile body in parts

Rebekah M. Ciribassi and Crystal L. Patil

Social Science & Medicine, 2016, vol. 148, issue C, 131-138

Abstract: This paper approaches the lived experiences of patients with a genetically inherited chronic disease, sickle cell disease (SCD), through the lens of (in)visibility. SCD has been referred to as an “invisible” disease for a variety of interrelated reasons, including the difficulty of objectively measuring its characteristic symptoms, the lack of popular or specialist attention, and its characterization as a “black” disease. By mobilizing “invisibility” as a way of probing the day-to-day reinforcements of marginality, this article delves into how structural forces are experienced, interpreted, and negotiated by individual actors. To this end, we present ethnographic data collected from November 2009 until November 2013 with SCD patients and healthcare workers in Chicago. These data emphasize that rendering (in)visible is not a totalizing act, but rather meaningfully breaks the body into differentially visible and ideology-laden parts. More broadly, this indicates the need to rigorously question sources and effects of authority in biomedicine.

Keywords: United States; (In)visibility; Sickle cell disease; Chronic illness; Health care; Medical authority; Race (search for similar items in EconPapers)
Date: 2016
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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DOI: 10.1016/j.socscimed.2015.11.033

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