Abstract
In “Self-Exceptionism and its Counternarrative: An Autonetnography of Shifting Diabetes Identity,” Heather R. Walker contemplates diabetes identity formation in a social environment that makes assumptions about what being diabetic must mean. Walker argues that bringing diabetes into her self-concept was a political act requiring unlearning and deconditioning. She describes moments of reckoning with internalized ableism, where she tried to locate herself within and apart from stereotypical formulations of diabetes. First, Walker deconstructs a representational strategy she calls self-exceptionism. Then, she offers an alternative framework for looking at diabetes identity which Walker terms radical trust.
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Notes
- 1.
As a young child, I interpreted the healthcare provider’s comment as a signal of my end. I thought they were telling me I would die at the age of 35. Now, having processed that memory with my parents, who were also there at the time, I realize I was told that if I kept my blood sugars in range, I could expect to reach at least age 35 before seeing complications (like kidney disease, blindness, or amputations).
- 2.
These messages are likely type-specific. I was not blamed, shamed, or belittled for my diagnosis—an experience many with type 2 diabetes have described (Liu et al. 2017), especially those with fat embodiment (Rogge et al. 2004; Teixeira and Budd 2010). On the contrary; I recall hearing many times that I was “innocent”. These welcome to type 1diabetes narratives set the groundwork of a diabetes identity built upon self-exceptionism. And my self-exceptionism was taught by my medical team, authenticated by comments I heard first-hand, and affirmed by popular media. By the age of 20, then 9 years post diagnosis, I had firmly internalized the idea that the diabetes stereotype (the rule) did not apply to me, nor to most others with type 1 diabetes (the exception).
- 3.
Racism and classism are two factors impacting the way mainstream media portrays diabetes as well. While it is not within the scope of this paper to fully unpack these factors, they will be mentioned herein.
- 4.
In U.S. culture, self-exceptionism can also be interpreted as a function of whiteness because it centers the ideals of individualism and subscribes to a belief in meritocracy (see: Sumerau and Grollman 2018; Nakayama and Krizek 1995; Meeuf 2014; Jin and Ball 2018; Lardier et al. 2019; Ellis 2017). Hiding behind these ideals can stall social justice and policy reform that would make for a more just and equitable society. Similarly, hiding behind self-exceptionism or using it to form identity in diabetes works to maintain the splintering of diabetic groups by type, race, and class.
- 5.
This argument may not apply to people who were diagnosed so early in life that they do not remember what life without diabetes was like. With that said, I would argue that even those diabetic people who do not remember non-diabetic life go through periods of asking “why me?”.
- 6.
I make this observation noting that my research in this area primes me to attend to such ideological shifts in community narrative. Skeptics might argue that such a statement is a sign of confirmation bias. However, I argue that it is more attributable to priming and insider knowledges of where to look than bias.
- 7.
This cultural tendency can likely be found elsewhere. However, it is not within the scope of this chapter to explore global perspectives. Future research from countries outside of United States where the particularities of diabetes experience differ is warranted.
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Walker, H.R. (2021). Self-Exceptionism and its Counternarrative: An Autonetnography of Shifting Diabetes Identity. In: Frazer, B.C., Walker, H.R. (eds) (Un)doing Diabetes: Representation, Disability, Culture. Palgrave Studies in Science and Popular Culture. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-83110-3_18
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