Identity, inheritance, and emotion: Oral histories of sickle cell anaemia in Britain, 1962 to 2018
Bio: Grace Redhead is a final year PhD student at University College London, where she held a Wellcome Doctoral Award. Her research examines the interactions between post-war immigration, the Welfare State and ideas of belonging and citizenship in Britain. She is the 2018/19 Royal Historical Society Centenary Fellow, based at the Institute of Historical Research.
Abstract: This paper will explore the experiences of Black British individuals with the hereditary blood disorder sickle cell disease (SCD) in London between 1962 and 2018. Through patient surveys conducted in the 1980s and oral history interviews conducted by the author, this paper will explore the emotionally charged encounters between people with this condition and the National Health Service over the past four decades. Families negotiated life with SCD at the same time as navigating the racism and discrimination rife in post-war Britain, and as these interviews reveal, these navigations could often be deeply emotional.
Doctors and nurses sometimes perceived sickle cell pain as drug-seeking behaviour, and administered pain relief on the basis of the patient’s expression and performance of their pain. At the same time, sickle cell crises can be induced by feelings of stress or excitement. Consequently, many people with sickle cell disease adopted strategies of emotional self-regulation, both to avoid the onset of pain and to advocate for their care in hospital. Within Black British communities, SCD has been subject to both stigma and political action. Some affected families kept their child’s illness, or their trait status, secret even from close relatives. Meanwhile, support groups created spaces for patients, parents and sympathetic healthcare professionals to share their experiences, hopes and fears, from which they generated political action.
Oral histories of sickle cell provide a unique lens onto the post-war British welfare state, and how its provision for (or lack thereof) its Black citizens required intense emotional work of them. It also opens up the experiences of Windrush citizens and their descendants, as they articulated their entitlement to care from the state and staked a claim to British citizenship.K
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