The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis

Alexandra C.H. Nowakowski
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Alexandra C.H. Nowakowski: College of Medicine, Florida State University, Tallahassee, FL 32306, USA

Social Sciences, 2019, vol. 8, issue 3, 1-18

Abstract: In this manuscript, I build and expand on prior work by myself (Nowakowski, 2016) and others exploring the dynamics of embodiment among people with chronic health conditions. Specifically, I critically investigate the intersecting social and medical elements of responses to bodies perceived as too thin and otherwise lacking in physical ability, using my own experiences of living and aging with cystic fibrosis (CF) as a case example. In these explorations, I center gendered identity and its intersection with disabling physical illness. I do so by using my own lived experiences as autoethnographic anchor points to guide critical review of key concepts from the nexus of these two content areas. I focus throughout on exploring how others’ reactions to a frail-looking body often constitute a form of forced gendering via the narratives people attempt to construct for why a person’s body appears that way. The title of the manuscript supports this framework by referencing three cornerstones of patient experience in the CF community: the general trend of patients having salty skin due to the pathology of the disease, a prior embodiment project called Salty Girls (Pettigrew, 2012) that engages this idea, and the more abstract concept of “saltiness” in describing the grit marginalized people display in responding to microaggressions.

Keywords: gender; nonbinary; cystic fibrosis; embodiment; agender identities; identity negotiation (search for similar items in EconPapers)
JEL-codes: A B N P Y80 Z00 (search for similar items in EconPapers)
Date: 2019
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