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

2018年的“疾风”丑闻导致1948年至1970年从英国前殖民地移民的英国黑人被剥夺英国公民身份，有时被驱逐回原籍国。西尔维斯特·马歇尔1973年来到英国后，在英国生活了44年，直到他能证明自己有资格享受英国国民健康保险制度的护理，他才被拒绝接受癌症治疗。当马歇尔的公民身份受到公开质疑时，他的案例也揭示了后殖民时期英国福利国家的一个更阴险的现实：英国黑人的公民身份可能受到质疑和破坏，因为国家对移民健康的选择性关注主要集中在传染病和精神疾病上，而忽视了长期慢性疾病。我的博士研究通过研究斯图尔特·霍尔（Stuart Hall）所说的“象征黑人的”遗传性血液疾病镰状细胞病（SCD），探讨了身体如何成为英国黑人在争取公民身份和归属感的斗争中经历和抵抗的关键场所。SCD突变，其破坏性和有时不可预测的影响，既是这些后殖民遭遇发生的地点，也是一个非人类的代理人，它迫使战后英国国家认同的两个相互矛盾的基础神话——一个“宽容”的国家，一个“白人”的国家——发生冲突。美国的人种学研究探索了在种族健康差异和美国医疗体系的背景下，医务人员和SCD患者之间的紧张接触，这些患者经历了这种疾病典型的痛苦“危机”（Rouse, 2009）。其他人类学工作探讨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、国家“类型”的SCD （Fullwiley, 2011）。通过档案资料和口述历史访谈，我的博士研究发现，在英国，对SCD及其症状的医学认识不足，对疼痛的忽视，以及病房中资深医生和护士的角色，造成了一种动态，在这种动态中，疼痛的患者无法说出他们的感受，否则会被指控寻求药物治疗。这种疼痛和缓解之间的相互作用成为SCD患者和国家之间关系的核心。如果获得这项奖学金，我将结合民族志和社会学的跨学科方法，加深我对这些疼痛缓解遭遇的分析。作为一种遗传性疾病，SCD的诊断在战后的英国具有特殊的意义，因为大多数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。这一诊断破坏或融入了他们的家族史和移民记忆，因为患者回忆起“回家”的家庭成员，他们经历过同样的症状，被赋予了不同的文化含义。诊断的那一刻变成了“真相时刻”（Lindee, 2005）或“顿悟时刻”（Hunsaker Hawkins, 1997），患者开始在生物医学框架中调和他们作为NHS患者的新身份与旧的家庭和健康文化观念，如尼日利亚人的转世观念。因此，我的工作将解开家庭和亲属关系的医疗化（Finkler, 2001）在后风时代的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影响。我获得这项奖学金的主要目的是通过撰写一份图书提案、一篇学术文章、在三次会议上发表演讲和撰写一篇针对医护人员的博客，向学术界内外的受众传播我的研究成果。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进行研讨会（亲自或在线），分享这项研究和我与镰状细胞协会的传统工作。

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.