Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school

Dyson, Simon; Atkin, Karl; Culley, Lorraine; Dyson, Sue; Evans, Hala; Rowley, Dave

doi:10.1016/j.socscimed.2010.03.010

Cited by 44 publications

(56 citation statements)

References 24 publications

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“…Even within the UK census category "White British", 1 in every 450 children born in England carries a gene relevant to sickle cell. But in England most (97 per cent) young people living with the chronic illness SCD described their ethnicity, when given a choice of UK Census categories, as Black African/Caribbean/Other (Dyson et al, 2010). The challenge is not just that SCD is seen as a "black disease" (Anthony's mother), but that in a racist society this association evokes a series of negative connotations of being black that also then attach to SCD (see Bediako and Moffitt, 2011).…”

Section: Conscious Strategies For Disabling Racismmentioning

confidence: 99%

“…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.…”

Section: Introductionmentioning

confidence: 99%

“…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 Archer (1995Archer ( , 2003 suggests an important distinction needs to be drawn between considering people as social actors and people as agents.…”

Section: Introductionmentioning

confidence: 99%

“…Thirdly, we feel our approach lessens the potential for the testimony of black community activists to be used against them. In presenting findings to an audience of fifty activists at the 2010 Sickle Cell Disease Association of America Annual Conference, the audience consensus was that the negative experiences of young people with SCD at school in England (Dyson et al, 2010) were also present in the USA in predominantly black schools with predominantly black teachers. Whilst we do not take this as evidence that racism is not there in the experience of young people with SCD at school, we feel there is a danger that this is precisely the message that could be inferred were one not able to make the case for racism being apparently absent but really underlying events.…”

mentioning

confidence: 99%

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

Dyson¹,

Atkin²,

Culley³

et al. 2013

Ethnic and Racial Studies

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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...

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Section: Conscious Strategies For Disabling Racismmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…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 Archer (1995Archer ( , 2003 suggests an important distinction needs to be drawn between considering people as social actors and people as agents.…”

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

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

Dyson¹,

Atkin²,

Culley³

et al. 2013

Ethnic and Racial Studies

Self Cite

View full text Add to dashboard Cite

show abstract

“…Such rules can create stigma and stereotyping around illness. This reinforces SCD as a concealable condition because individuals are most likely to obscure the disease to avoid social implications (Dyson et al, 2010). Indeed, those with sickle cell in Saudi Arabia are often perceived to be disabled, or in the process of becoming disabled, because disability and sickle cell are linked.…”

Section: 1mentioning

confidence: 87%