What is it about?

Young people with SCD 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 the young people living with SCD can then employ are therefore fragile: they work only contingently, transiently, or have unintended consequences of displacing other valued social relations. The tactics of the young people are framed by other social struggles: innovations in school procedures address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers negotiate and advocate in support of their child, 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.

Featured Image

Why is it important?

Young people with SCD are found to be routinely awkwardly positioned between the demands of their doctors, who advised on how they could remain well through self-care and taking appropriate precautions, and the practices of the school with its emphases on routines and consistent attendance. Even where good practice is in evidence in schools, the school concerned tends to address just one aspect of sickle cell in isolation and this is not consolidated into comprehensive school policies. A model school policy has therefore been produced by the project

Perspectives

A personal concern of mine is the lack of attention to social policies that could support people living with sickle cell disorders (SCD) compared to the extensive attention given to basic and clinical research and initiatives. Sickle cell in schools is a case in point. Unless young people with SCD are supported in schools through strong enabling policies then they reduce their chances of achieving their potential as adults both in employment/work and in their health status. The Guide to School Policy on Sickle Cell, which was written as a result of this research, has been released as an open education resource (CC-BY-SA) and adapted and translated for use in Nigeria and Brazil. Sickle Cell: A Guide to School Policy (Nigerian English Language version) http://www.sicklecellanaemia.org/open-education-resources/sickle-cell-guide-for-schools-nigerian-english-translation Sickle Cell: A Guide to School Policy (Nigerian Yoruba Language version) http://www.sicklecellanaemia.org/open-education-resources/sickle-cell-guide-for-schools-yoruba-translation Sickle Cell: A Guide to School Policy (Nigerian Igbo Language version) http://www.sicklecellanaemia.org/open-education-resources/sickle-cell-guide-for-schools-igbo-translation Sickle Cell: A Guide to School Policy (Nigerian Hausa Language version) http://www.sicklecellanaemia.org/open-education-resources/sickle-cell-guide-for-schools-nigerian-hausa-translation Sickle Cell: A Guide to School Policy (Brazilian Portuguese Language version) http://www.sicklecellanaemia.org/open-education-resources/sickle-guide-for-schools-portuguese-translation

Professor Simon M Dyson
De Montfort University

Read the Original

This page is a summary of: Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school, Sociology of Health & Illness, March 2011, Wiley,
DOI: 10.1111/j.1467-9566.2010.01301.x.
You can read the full text:

Read

Resources

Contributors

The following have contributed to this page