Sickle cell: a signifier for the New Europe.
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Abstract
Sickle cell and thalassaemia are health issues affecting many established and migrant minority ethnic groups across Europe. This book chapter seeks to demonstrate that sickle cell as an issue signifies both the challenges, and the possible policy initiatives needed, across mnay social policy themes.
Asylum seekers and refugees sometimes discover that they or their children have sickle cell only once they come to Europe and are screened as part of ante-natal or neonatal care. Health and social welfare services, though, may be ill-informed, unresponsive and struggle to provide appropriate services, as support groups in Eire and Holland will attest to. A number of challenges to deportation by the immigration authorities have mobilised their sickle cell or the sickle cell of their child, as a resource to resist deportation. Among right-wing extremist groups both anti-immigration groups and the BNP have mobilised sickle cell as an emotive signifier of difference or contagion. In the education system, children with sickle cell face disabling barriers in the form of lack of school policies on sickle cell covering such issues as absences; preventive measures; medical conditions in school; relevance of the curriculum, and any cohesive challenge to racialising and disabling discourses. In criminal justice, sickle cell trait has been invoked to distract attention away from black deaths in custody; yet those with the illness sickle cell anaemia are not well cared for. Youth and community work is associated with interventions around young people’s rights and perspectives; mediating with bureaucracies, providing innovative frames for youth activity, and certain specific initiatives around, for example, drugs education. These concerns come together around the contested site of treatment for severe painful sickle cell crises with opiate-based drugs. The housing needs of those with sickle cell – to be warm, free from infection-inducing damp; free of stress in terms of residential location; and not high-rise for those with mobility needs – are inversely related to the likely allocation of housing to minority ethnic groups. The fragility of community cohesion is revealed by the reaction of self-defined White English carriers of genes associated with sickle cell who describe themselves as ‘tainted’ by genes they associate with ‘being black’, suggesting a persistence of scientific racism in popular discourse. This belief in distinct biological ‘race’ informs the work of some health professionals, who think they can intuitively identify visually those at risk of sickle cell. Similar misplaced beliefs can have deadly effects in terms of security/terrorism. Jean Charles de Menezes, of Brazilian descent, was described by an eye witness as “Asian”, and was visually confused by detectives with Hussein Osman, who is Ethiopian by birth. ‘Race’ thus remains a key resource in popular discourse both in relation to health screening and security policing.
Stuart Hall once famously described ‘race’ as a ‘floating signifier’. Perhaps sickle cell is a floating signifier of a second order. For some it signifies ‘race’ and can thereby be mobilised as negative signifier across all the domains mentioned previously discussed. But, properly understood, sickle cell disrupts prevailing notions of ‘race’, could signify both diversity and connectedness, and could be a key cultural resource in framing a New Europe.