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

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  • Ciribassi, Rebekah M.
  • Patil, Crystal L.

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.

Suggested Citation

  • Ciribassi, Rebekah M. & Patil, Crystal L., 2016. "“We don't wear it on our sleeve”: Sickle cell disease and the (in)visibile body in parts," Social Science & Medicine, Elsevier, vol. 148(C), pages 131-138.
    • Handle: RePEc:eee:socmed:v:148:y:2016:i:c:p:131-138
    DOI: 10.1016/j.socscimed.2015.11.033
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    References listed on IDEAS

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    1. Baer, Hans A., 1989. "The American dominative medical system as a reflection of social relations in the larger society," Social Science & Medicine, Elsevier, vol. 28(11), pages 1103-1112, January.
    2. Elander, James & Lusher, Joanne & Bevan, David & Telfer, Paul, 2003. "Pain management and symptoms of substance dependence among patients with sickle cell disease," Social Science & Medicine, Elsevier, vol. 57(9), pages 1683-1696, November.
    3. Atkin, Karl & Ahmad, Waqar I. U., 2001. "Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder," Social Science & Medicine, Elsevier, vol. 53(5), pages 615-626, September.
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    Cited by:

    1. Smith-Morris, Carolyn, 2017. "Epidemiological placism in public health emergencies: Ebola in two Dallas neighborhoods," Social Science & Medicine, Elsevier, vol. 179(C), pages 106-114.

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