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

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  • Alexandra C.H. Nowakowski

    (College of Medicine, Florida State University, Tallahassee, FL 32306, USA)

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.

Suggested Citation

  • Alexandra C.H. Nowakowski, 2019. "The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis," Social Sciences, MDPI, vol. 8(3), pages 1-18, March.
    • Handle: RePEc:gam:jscscx:v:8:y:2019:i:3:p:78-:d:210593
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    References listed on IDEAS

    as
    1. Willis, Evan & Miller, Rosemary & Wyn, Johanna, 2001. "Gendered embodiment and survival for young people with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 53(9), pages 1163-1174, November.
    2. Jordon D Bosse & Lisa Chiodo, 2016. "It is complicated: gender and sexual orientation identity in LGBTQ youth," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(23-24), pages 3665-3675, December.
    3. Lowton, Karen, 2003. "'Double or quits': perceptions and management of organ transplantation by adults with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 56(6), pages 1355-1367, March.
    4. Petersen, Alan, 2006. "The best experts: The narratives of those who have a genetic condition," Social Science & Medicine, Elsevier, vol. 63(1), pages 32-42, July.
    5. Williams, Brian & Mukhopadhyay, Somnath & Dowell, Jon & Coyle, Joanne, 2007. "From child to adult: An exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis," Social Science & Medicine, Elsevier, vol. 65(10), pages 2135-2146, November.
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