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

Lead Research Organisation: University of Warwick
Department Name: History


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.


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Description So far for this award, I have put together an exhibition about the history and memory of sickle cell anaemia in post-war Britain. This used oral history recordings made by the Sickle Cell Society to present patient-centred experiences of SCD, alongside historical archives and the use of creative expression. This was done in consultation with the sickle cell community members.
Exploitation Route We have also been collecting archives to be stored at the Wellcome Library, for use by future researchers.
Sectors Culture, Heritage, Museums and Collections

Description Online exhibition at Black Cultural Archives 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact In collaboration with the Sickle Cell Society, we have put on an online exhibition at the Black Cultural Archives, entitled: 'Our journey, our story: History and memory of sickle cell anaemia in Britain, 1950-2020'.
Year(s) Of Engagement Activity 2021