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

Abstract

of societal inoculation against accusations of racism), naming racism as an emergent strategy (when communal discussions enable multiple negative experiences to be framed and named as racism), and "passing" (not ostensibly experiencing racism if one is sufficiently light-skinned). Critical realism suggests how racism may be structuring the experiences of students with SCD at school even in the absence of specific accounts by young people.Keywords: sickle cell; racism, agency, critical realism, case study, schools.3 IntroductionSickle cell disorder (SCD) is a complex chronic illness, which in England is more common in those of Black African/Caribbean descent. Young people with SCD report extensive negative experiences in their school lives (Dyson et al, 2010) and it is important to ascertain the extent to which disability discrimination or racism contribute to these experiences. In this article the authors suggest a theoretical position for understanding the subtlety of racism in structuring the lives of young black students with SCD even in the absence of any reported racism. Racism is conceived of as an ideational phenomenon deriving its power through specific socio-political interactions (such as slavery)which leave historical-material and cultural-ideational structures that constrain subsequent interactions (Carter, 2000). This conception of racism derives from the broader theoretical position of critical realism. We first outline this theory of critical realism. We next describe our research programme of the experiences in school of young people living with SCD, within which the ten case studies we consider are situated. We suggest racism cannot be assumed to be absent on the basis of the lack of explicit references to the phenomenon, and consider the subtle ways racism structures school experiences. Critical Realism and RacismCritical realism is a philosophy underlying social research. The social world is conceived as having ontological depth, with three realms: the observable, the actual (hidden from immediate interaction but observable in principle), and the 4 realm of the real, comprising structures, unobservable, even in principle (Bhaskar, 1979). Such structures might include capitalist relations of production or post-colonial relations. Following Layder (1990), social relations (structures) of discriminatory practice are not directly observable (and so may be opaque to individual actors), though social relationships between black students and white teachers potentially are. There is a distinction between experiential common sense language (race) and social scientific analysis of racism (Carter, 2000).Critical realism involves "a plausible case for the existence of unobservable entities […] by reference to observable effects which can only be explained as the products of such entities" (Sayer, 2000, p. 12). There is an analytic distinction between studying structure and studying agency, avoiding reducing one to the other (Archer, 1995). Thus practices that have discriminatory effects are to be analysed...

Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study

“…Working on young people's wider social contexts, including educational contexts (e.g. schools 80,154 and universities), is essential to create enabling spaces for young people to use their patient expertise and have it recognised to protect their health while still consolidating self-actualising adult identities that help them achieve their life goals. Substantial work is needed in this wider social context to raise awareness about the condition, educate the public and address stigma and stereotyping associated with SCD-related fatigue and use of opioids for pain relief.…”

Tabulating experiences of racism and racial discrimination across the life course.

“…Critical attention to these accounts enables researchers to focus attention on transforming these structures, rather than addressing the states of affairs that these structures produce (Bhaskar, 2011). The structures still exist in the absence of observable events that can be storied as racism (Dyson et al, 2014). The reduction in observable events experienced as racism does not alter the structures that make racism and racial discrimination possible.…”

“…Addressing racism requires strategic collective action to transform the social relations that make racism possible rather than to merely eliminate acts of racial discrimination within social relationships. These collective actions will not produce structural change unproblematically, as all actions bring about both intended and unintended consequences (Dyson et al, 2014). Mechanisms and powers operate as tendencies, and alternative mechanisms acting concurrently may prevent tendencies from being realized in observable events (Fleetwood, 2017).…”

Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

“…Any work to support young people's healthcare transitions should also involve working with their wider social contexts, including schools (Dyson et al . ), to create enabling spaces for young people to protect their health while still developing adult identities that maximise their potential to achieve their life goals.…”

“…This participatory work is crucial if we are to support young people's agency to cultivate self-specified and fulfilling identities rather than simply pushing them to conform to hegemonic forms of adulthood. Any work to support young people's healthcare transitions should also involve working with their wider social contexts, including schools (Dyson et al 2014), to create enabling spaces for young people to protect their health while still developing adult identities that maximise their potential to achieve their life goals.…”