The educational experiences of young people with sickle cell disorder: a commentary on the existing literature

Sickle cell disease (SCD) is a chronic illness that in England disproportionately affects marginalized ethnic groups, but has yet to feature extensively within educational or disability research. This review of existing literature makes the case for a sustained developmental research programme around SCD, disability and education. There are potentially life-saving decisions that could be made by teachers in caring for a child with SCD. The place of the school as a venue for health screening with respect to vision, hearing and dental care is also complicated by SCD. The lack of a formal school policy to address the combined episodic and longer term school absences correlated with SCD clearly disadvantages a group of pupils whose academic potential may already have been curtailed by teacher expectations based on their ethnicity. Both the physical and social milieu of the school could be adapted so that the environmental triggers of severe painful episodes associated with SCD are greatly reduced. Systems of pastoral care and health education elements of the school curriculum need to be attuned to the challenges and opportunities for learning that SCD raises. SCD may be considered as a resource for education across a range of national curriculum subjects, could bring an anti-racist dimension to subjects such as maths, biology, history and geography, and could challenge a number of prevailing disabling and racist discourses in wider society. In short, sickle cell could be one bridge to more inclusive education for pupils of marginalized ethnic groups.Economic and Social Research Council Grant RES-000-23-148