Simon Dyson

Beyond normalization and impairment: theorizing subjectivity in learning difficulties – theory and practice

Normalization and social role valorization continue to play a central role in shaping debates and practice relating to learning difficulties. In the context of recent arguments this paper draws on the work of Foucault to deconstruct these theories. Foucault’s work alerts us to a conceptual confusion at their heart which reproduces a common but problematic individual–society dualism. There is an implicit, and problematic, presence in the theories of a pre‐social individual conceived as having essential impairments and who is passive in the face of negative socialization. We propose that Foucault’s ‘ethical’ domain of inquiry, with its concern for how people actively understand themselves and govern their conduct in relation to specific values and a ‘truth’ that they are obliged to recognize in themselves, provides the basis for returning the individual‐as‐subject to theories in an active, critical manner.

Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] in England: A Randomised Controlled Trial of Two Questionnaires

Concepts allied to ethnicity are increasingly coming under question as legitimate variables for use in health research. A randomised controlled trial of two ethnicity screening questions for ascertaining risk of carrying genes associated with sickle cell and thalassaemia illustrates the challenges and limitations of assessing an association of social constructs and genetic statuses. Objectives . To evaluate two candidate ethnicity screening questions in antenatal screening programmes in low, mixed and high sickle cell prevalence areas, and to identify time taken in administration of the questions by use of the following measures: 1. Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview. 2. Numbers of carriers of clinically significant haemoglobin disorders missed by ethnicity screening questions. 3. Time taken to explain screening question for sickle cell disease (SCD)/thalassaemia and obtain ethnic/family origins. 4. Proportion of clients providing usable ethnic/family origins data. 5. Reported ethnic/family origins in pregnant women at first booking with midwife. Design . Ten-month (September 2002–June 2003) questionnaire study with random allocation to two self-administered ethnicity questions, comparison with laboratory results and results from re-interview. The settings were antenatal booking clinics in four geographical areas of England of varying expected foetal prevalence of SCD: very high (29.75 per 10,000 pregnancies); high (8.2); mixed high and low (1.29); and low (0.18). The subjects were 4,559 pregnant women at first booking with midwife. Results . Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview were 4.33% (CI 2.63–6.68%) for a category-based question and 9.45% (CI 6.86–12.61%) for a binary plus open-ended question. Proportions of carriers missed were 5.74% (CI 2.34–11.46%) and 9.71% (CI 4.75–17.13%) by category-based and binary plus open-ended questions, respectively. Average time taken to ascertain ethnic/family origins for screening was between 2.17 and 5.12 minutes in different areas, and up to 15 minutes at the 95th centile. Usable ethnicity screening data was missing in 2.94% of instances. Errors in interpretation or missing data were 3.2% for a category-based question and 4.71% for a binary plus open-ended ethnicity question. Ethnicity Question A produces fewer cases of missing or misinterpreted data (p < 0.001). Conclusions . A category-based ethnicity screening question was more effective than a binary plus open-ended question. Using the more effective question, 5.74% (CI 2.34–11.46%) of significant haemoglobinopathies will be missed in a selective screening programme, and 4.33% (CI 2.63–6.68%) of replies to an ethnicity screening question will be unreliable when compared to information given upon re-interview. In specific carefully circumscribed situations, namely, in antenatal screening for sickle cell and thalassaemia, it is possible to measure the degree of association between social constructs of ethnicity and health status in a manner that may help in effecting policy decisions.

‘I can die today, I can die tomorrow’: lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition

Objective. To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana. Design. Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD. Results. Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence. Conclusion. Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.

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

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.

Territory, Ancestry and Descent: The Politics of Sickle Cell Disease

Sociologists have long questioned the naturalness and stability of ‘ethnic groups’, suggesting that a concern with how they are socially constituted is more appropriate. However, the example of genetically based medical conditions appears to challenge this by suggesting that, in certain cases, ancestry, territorial affiliation and identity may be linked objectively by genetics. The article uses the example of sickle cell disease (SCD) to examine this claim. After reviewing the difficulties associated with notions of ethnicity, the article develops an account of how SCD came to be seen as an ‘ethnic disease’, and how it came to play a major role in the stabilization of particular forms of group identity. It concludes by emphasizing the need for a critical view of popular notions of territory and group identification.

Reported school experiences of young people living with sickle cell disorder in England.

A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One in eight has school absences equating to government-defined ‘persistent absence’. Students with SCD report that they are not helped to catch up after these school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill health would also support children with other chronic illnesses at school.

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

Sickle cell disorder (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 mathematics, biology, history and geography and could challenge a number of prevailing disabling and racist discourses in wider society. In short, SCD could be one bridge to more inclusive education for pupils of marginalized ethnic groups.

Genetic screening and ethnic minorities.

No theory of ‘race’ and ethnicity is without serious practical drawbacks for effecting selective screening for haemoglobin disorders. Universal screening raises issues about consent, resources and eugenicist representation of impairment. The latter requires that people living with haemoglobin disorders and their counsellors should be central to education of practitioners in this area. Practitioners should link explanations of the haemoglobin disorders to explorations with the client of their perception of their ethnic identity. This should address the dangers of not informing clients of the tests; of not explaining to clients the nature and inheritance of haemoglobin disorders; and of not testing those who wish not to be tested. It should enable a record of ethnicity to be made which is tailored to the specific health purpose for which the information is sought.

Sickle cell and thalassaemia: global public health issues come of age

Editorial for a special themed edition of the international journal ETHNICITY & HEALTH on sickle cell and thalassaemia

Children and young people in hospitals: doing youth work in medical settings

Young people in hospitals face a range of challenging issues. Many have chronic conditions and experience stigmatisation, anxiety and family conflict. They may also experience social isolation in hospitals, separation from local peer groups and sources of support, and separation from trusted carers during transition to adult care. These issues can require careful handling. However, there is evidence that clinical staff often do not communicate effectively with young patients, that relationships can become contested, especially around ‘adherence’ to treatment regimens, and that important underlying difficulties that young people face are not addressed, leading to resistance and disengagement from care. This paper explores this range of challenges, and presents some research evidence to argue that youth work is particularly well placed to engage with such issues. Although youth work in UK hospitals is currently very rare and under-researched, we contend that what evidence is available suggests that it can be effective in addressing the challenges of young peoples experience, and may have important health and wider-ranging general benefits for young people, health staff and hospitals.