Sickle cell, habitual dys‐positions and fragile dispositions: young people with sickle cell at school

Abstract

The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu’s notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual demands for active and passive pupil behaviour. The tactics or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell.

Critical realism, agency and sickle cell: case studies of young people with sickle cell disorder at school

“…The interviewees were drawn from 200 volunteering for interview from the 569 questionnaires. The forty were chosen for diversity in reported level of school success (Dyson et al, 2011).…”

“…For example, Caribbean nurses coming to the UK in the 1950s developed resistances that depended on distinguishing between racism and discriminatory outcomes based on gender, age, or relative occupational status (Culley et al, 1999). This is not to deny that stereotypes may be co-constructed through the intersection of, say, gendered relations and racism (Ladson-Billings, 2009), but it does suggest that discriminating between different forms of oppression helps people retain a coherent sense of identity, something young people living with SCD struggle with at school in the face of multiple oppressions (Dyson et al, 2011). Secondly, schools find it challenging to be inclusive of young people with chronic illnesses (Mukherjee et al, 2000), and teacher/pupil response to illness is a key mediator of pupil accounts of racism (Stevens, 2009).…”

“…The interviewees were drawn from 200 volunteering for interview from the 569 questionnaires. The forty were chosen for diversity in reported level of school success (Dyson et al, 2011).Interviewees recounted a lack of appropriate support and care. However, it was not possible from the accounts to attribute teachers' reported (in)actions 8 concerning students with SCD as necessarily deriving from stereotypical views of black students which then intersected with SCD symptoms to further disadvantage students with SCD.…”

“…However, it was not possible from the accounts to attribute teachers' reported (in)actions 8 concerning students with SCD as necessarily deriving from stereotypical views of black students which then intersected with SCD symptoms to further disadvantage students with SCD. Indeed, across the forty interviews there was only one explicit reference to racism, and this instance was put aside from the main analysis (Dyson et al, 2011) for follow up in the case study phase of the research that forms the basis for this paper.Young people with SCD were selected for the case studies on the basis of dimensional sampling (Cohen et al, 2007). We approached fourteen respondents, ensuring we had male and female respondents of Black African and Black Caribbean descent.…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…In exploring the fields in which people conduct their social relations, essential elements need to be considered including active negotiation and the sense of self (Dyson, Atkin, Culley, Dyson, & Evans, 2011). Defining the self involves, not only how people see themselves, but also how the self is defined by others ).…”