Identity, citizenship and sickle cell anaemia in the postcolonial National Health Service

后殖民国家卫生服务中的身份、公民身份和镰状细胞性贫血

• 批准号: ES/V011944/1
• 负责人: Grace Redhead
• 金额: $ 11.64万
• 依托单位: University of Warwick
• 依托单位国家: 英国
• 项目类别: Fellowship
• 财政年份: 2020
• 资助国家: 英国
• 起止时间: 2020 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FV011944%2F1
• 关键词: Identity; citizenship; sickle; cell; anaemia

The Windrush scandal of 2018 saw Black British people who had migrated from former British colonies from 1948 to 1970 denied British citizenship and sometimes deported back to their countries of origin. Sylvester Marshall, who had lived in Britain for 44 years after his arrival in 1973, was denied cancer treatment until he could prove he was eligible for NHS care. While Marshall's citizenship was being openly challenged, his case also reveals a more insidious reality of the postcolonial British welfare state: that the citizenship of Black British people could be questioned and undermined by a selective state interest in migrant health focused primarily upon communicable disease and mental illness, and ignoring long-term chronic illness.My doctoral research explored how the body became a key site of experience and resistance in the struggles over citizenship and belonging for Black British people, through examining what Stuart Hall called the 'emblematically black' hereditary blood disorder sickle cell disease (SCD). The SCD mutation, with its devastating and sometimes unpredictable effects, is both the site where these postcolonial encounters occur and a non-human agent which has forced a confrontation between two contradictory foundation myths of post-war British national identity - that of a 'tolerant' nation, and that of a 'white' nation. Ethnographic research in the US has explored tense encounters between medical staff and SCD patients experiencing the painful 'crises' typical of the illness in the context of racial health disparities and the American healthcare system (Rouse, 2009). Other anthropological work has explored how a fusion of local knowledge in Senegal with Western biomedicine produced a sense of a distinct, national 'type' of SCD (Fullwiley, 2011). Using archival sources and oral history interviewing, my doctoral research found that in Britain, a combination of poor medical awareness of SCD and its symptoms, embedded 'emotional regimes' disregarding pain, and the role of senior doctors and nurses on the ward created a dynamic in which patients in pain could not articulate how they felt without drawing accusations of drug-seeking. This charged interplay between pain and relief became central in relationships between SCD patients and the state. If awarded this fellowship, I will incorporate interdisciplinary approaches of ethnography and sociology to deepen my analysis of these encounters over pain relief.As a hereditary illness, a diagnosis of SCD had a particular meaning in post-war Britain, where most SCD patients are first-, second- or third-generation migrants from the Caribbean or West Africa. This diagnosis disrupted or became incorporated into their conceptions of family history and memories of migration, as patients recalled family members 'back home' who had experienced the same symptoms, endowed with different cultural meanings. The moment of diagnosis became a 'moment of truth' (Lindee, 2005) or 'epiphany' (Hunsaker Hawkins, 1997) in which patients began to reconcile their new identity as NHS patients in a biomedical frame with older cultural notions of family and health, such as Nigerian ideas of reincarnation. My work will therefore unpick what the medicalization of family and kinship (Finkler, 2001) meant in the context of post-Windrush Britain and its African diaspora, exploring the transformative effect of migration on individuals' sense of health, illness and identity. My main aim for this fellowship is to disseminate my research findings to audiences in academia and beyond, by developing a book proposal, one scholarly article, presenting at three conferences, and writing a blog aimed at HCPs. Secondarily, I will conduct workshops (in person or online) with sickle cell support groups in Croydon, Cardiff and Birmingham sharing both this research and my heritage work with the Sickle Cell Society.

2018年的温德鲁什丑闻中，1948年至1970年从前英国殖民地移民的英国黑人被剥夺了英国公民身份，有时被驱逐回原籍国。西尔维斯特马歇尔在1973年抵达英国后已经在英国生活了44年，在他能够证明自己有资格获得国民保健服务之前，他被拒绝接受癌症治疗。虽然马歇尔的公民身份受到公开挑战，但他的案件也揭示了后殖民时代英国福利国家更阴险的现实：英国黑人的公民身份可能会受到质疑，并被主要集中在传染病和精神疾病的移民健康方面的选择性国家利益所破坏，我的博士研究探索了身体如何成为英国黑人在公民身份和归属感斗争中的关键体验和阻力，通过检查斯图尔特·霍尔所说的“象征性的黑色”遗传性血液疾病镰状细胞病（SCD）。SCD突变具有毁灭性的、有时是不可预测的影响，它既是这些后殖民遭遇发生的场所，也是一种非人类的媒介，迫使战后英国民族认同的两个相互矛盾的基础神话--一个“宽容”的民族和一个“白色”的民族--发生对抗。美国的人种学研究探讨了在种族健康差异和美国医疗保健系统的背景下，医务人员与经历这种疾病典型的痛苦“危机”的SCD患者之间的紧张接触（Rouse，2009）。其他人类学工作探索了塞内加尔当地知识与西方生物医学的融合如何产生一种独特的民族“类型”SCD的感觉（Fullwiley，2011）。利用档案资料和口述历史采访，我的博士研究发现，在英国，对SCD及其症状的医学认识不足，忽视疼痛的嵌入式“情感制度”，以及病房中高级医生和护士的角色，这些因素的结合创造了一种动态，在这种动态中，疼痛患者无法表达他们的感受，而不会引起寻求药物的指控。疼痛和缓解之间的这种相互作用成为SCD患者与国家之间关系的核心。如果获得该奖学金，我将结合人种学和社会学的跨学科方法，深化我对这些遭遇的分析，而不是缓解疼痛。作为一种遗传性疾病，SCD的诊断在战后的英国具有特殊意义，大多数SCD患者是来自加勒比海或西非的第一代、第二代或第三代移民。这一诊断扰乱或融入了他们对家族史和移民记忆的概念，因为患者回忆起“回家”的家庭成员，他们经历了相同的症状，被赋予了不同的文化含义。诊断的那一刻变成了“真理的时刻”（Lindee，2005）或“顿悟”（Hunsaker Hawkins，1997），患者开始在生物医学框架中调和他们作为NHS患者的新身份与家庭和健康的旧文化观念，如尼日利亚的转世观念。因此，我的工作将揭示家庭和亲属关系的医学化（Finkler，2001）在后Windrush英国及其非洲侨民的背景下意味着什么，探索移民对个人健康，疾病和身份感的变革性影响。我这次奖学金的主要目的是传播我的研究成果，在学术界和超越观众，通过制定一本书的建议，一篇学术文章，在三个会议上提出，并写一个博客，针对HCP。其次，我将与克罗伊登，卡迪夫和伯明翰的镰状细胞支持团体举办研讨会（亲自或在线），分享这项研究和我与镰状细胞协会的遗产工作。