{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T12:18:14Z","timestamp":1784117894459,"version":"3.55.0"},"reference-count":32,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2019,12,20]],"date-time":"2019-12-20T00:00:00Z","timestamp":1576800000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2019,12,20]],"date-time":"2019-12-20T00:00:00Z","timestamp":1576800000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000269","name":"Economic and Social Research Council","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Med Humanit"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>In this article I consider the role of passing and performance in the everyday lives of alkaptonuria (AKU) and vitiligo patients. Race, LGBTQ, gender and disability scholars have long used the term passing to describe sub-groups of people within marginal populations who intentionally manipulate their bodies or alter their behaviour in order to claim identities that are not socially assigned to them at birth. In this paper I demonstrate the effectiveness of the passing strategies that patients use in order to mitigate their disease symptoms and render them invisible, thus enabling them to pass as \u201chealthy\u201d or unaffected by their condition. I further consider how patients who choose not to pass utilise resistance strategies in order to generate awareness of their disease and encourage funding for it. I conclude by assessing the effectiveness of these strategies in determining whether or not patients can pass, and the ways in which this is aided or hindered by their social and economic status.<\/jats:p>","DOI":"10.1007\/s10912-019-09600-x","type":"journal-article","created":{"date-parts":[[2019,12,20]],"date-time":"2019-12-20T03:02:41Z","timestamp":1576810961000},"page":"73-88","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Passing Strategies and Performative Identities: Coping with (In)Visible Chronic Diseases"],"prefix":"10.1007","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5229-6435","authenticated-orcid":false,"given":"Tanisha Jemma Rose","family":"Spratt","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2019,12,20]]},"reference":[{"issue":"2","key":"9600_CR1","doi-asserted-by":"publisher","first-page":"87","DOI":"10.1177\/02632769922050566","volume":"16","author":"S Ahmed","year":"1999","unstructured":"Ahmed, S. 1999. \u201c\u2018She\u2019ll Wake Up One of These Days and Find She\u2019s Turned into a Nigger:\u2019 Passing Through Hybridity.\u201d Theory, Culture and Society 16 (2): 87-106.","journal-title":"Theory, Culture and Society"},{"key":"9600_CR2","doi-asserted-by":"publisher","DOI":"10.1057\/9781137265302","volume-title":"Women and Fluid Identities: Strategic and Practical Pathways Selected by Women","author":"H Afshar","year":"2012","unstructured":"Afshar, Haleh. 2012. 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Siegel. 2011. Sick Societies: Responding to the Global Challenge of Chronic Disease. Oxford: Oxford University Press."},{"key":"9600_CR31","doi-asserted-by":"crossref","unstructured":"Wald, G. 2000. Crossing the Line: Racial Passing in Twentieth Century U.S Literature and Culture. Durham: Duke University Press.","DOI":"10.2307\/j.ctv11smxsg"},{"key":"9600_CR32","doi-asserted-by":"publisher","DOI":"10.1057\/9781137319302","volume-title":"The Politics of In\/Visibility: Being There","author":"K Woodward","year":"2015","unstructured":"Woodward, K. 2015. The Politics of In\/Visibility: Being There. 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For further information see: Porter et al. 1979,<sup>6<\/sup> These symptoms typically occur after patients reach the age of 30.<sup>7<\/sup> Whilst these symptoms are largely invisible to unsuspecting onlookers, it is possible for medical professionals who have heard of AKU to recognise these symptoms as signs of the condition.<sup>8<\/sup> In relation to chronic pain and fatigue.<sup>9<\/sup> Note that I interviewed one US patient in the UK and spoke with two other UK-based patients about their experiences using the National Health Service (NHS) in order to consider any interesting and\/or relevant connections between the two countries.<sup>10<\/sup> Note that participants are limited in their ability to control the amount of attention that their disease symptoms attract because they cannot control the individual subjectivities of the onlookers who criticize them.<sup>11<\/sup> Participants reported feeling particularly self-conscious when their vitiligo spread to these areas because they are immediately visible to onlookers.<sup>12<\/sup> There is a common misconception that vitiligo is directly linked to albinism as both result in a loss of skin pigmentation.<sup>13<\/sup> This is, of course, largely dependent on the clothing that she wears.<sup>14<\/sup> During her interview Claire described at length how she was often required to prove that she had a medical condition to others who, because they had not heard of AKU, did not believe her.<sup>15<\/sup> Note that joint pain derives from a build up of homogentisic acid, which causes ochronotic pigment to form on the patient\u2019s bones and joint cartilage, eventually leading to joint and bone deterioration and, often, chronic pain.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Endnotes"}}]}}