We don't wear it on our sleeve.pdf (126.97 kB)
0/0

"We don't wear it on our sleeve": Sickle cell disease and the (in)visible body in parts.

Download (126.97 kB)
journal contribution
posted on 11.08.2017 by RM Ciribassi, CL Patil
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.

Funding

This research was supported by the University of Illinois at Chicago (UIC) Sarah Madonna Kabbes Research Award, the UIC Liberal Arts and Sciences Undergraduate Research Initiative, The UIC Provost's Faculty Scholarships Program, and the UIC Office of Social Science Research Seed Grant.

History

Publisher Statement

This is the author’s version of a work that was accepted for publication in Social Science and Medicine. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Social Science and Medicine, 2016. 148: 131-138. DOI: 10.1016/j.socscimed.2015.11.033.

Publisher

Elsevier Inc.

issn

0277-9536

Issue date

01/01/2016

Exports

Categories

Exports