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Legitimate suffering: a case of belonging and sickle cell trait in Brazil

Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on...

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Detalles Bibliográficos
Autor principal: Creary, Melissa
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Palgrave Macmillan UK 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8548145/
https://www.ncbi.nlm.nih.gov/pubmed/34721651
http://dx.doi.org/10.1057/s41292-021-00250-8
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author Creary, Melissa
author_facet Creary, Melissa
author_sort Creary, Melissa
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description Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress.
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spelling pubmed-85481452021-10-27 Legitimate suffering: a case of belonging and sickle cell trait in Brazil Creary, Melissa Biosocieties Original Article Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress. Palgrave Macmillan UK 2021-10-27 2021 /pmc/articles/PMC8548145/ /pubmed/34721651 http://dx.doi.org/10.1057/s41292-021-00250-8 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Original Article
Creary, Melissa
Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title_full Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title_fullStr Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title_full_unstemmed Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title_short Legitimate suffering: a case of belonging and sickle cell trait in Brazil
title_sort legitimate suffering: a case of belonging and sickle cell trait in brazil
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8548145/
https://www.ncbi.nlm.nih.gov/pubmed/34721651
http://dx.doi.org/10.1057/s41292-021-00250-8
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