Disability Equality and Research Network London School of Economics Cutting the Gordian Knot: Epidemiologist And Activist Perspectives on Ethnic Disparities in Schizophrenia Rampaul Chamba ESRC Centre for Social and Economic Research The Open University

ETHNIC DISPARITIES 4 decades of research Ethnic disparities in admissions and diagnoses of psychoses especially schizophrenia and mania among Black African-Caribbeans in adult in-patient and low to medium secure mental health facilities Hospital admissions data - hospitals Academic/university studies Government research data – e.g. Count Me in Census Psychiatric epidemiology – Institute of Psychiatry

DATASET 40 interviews with epidemiologists (most but not all from Institute of Psychiatry) Activists (mainly Black African Caribbeans; researchers; clinical psychiatrists/researchers; academic commentators; policy; charities; voluntary organisations; clergy) Critical psychiatrists & therapists Civil servants (mental health policy) Participant observation in conferences, symposia and debates to obtain perspectives which might otherwise have remained unclear or hidden Focus of talk on epidemiologists (clinical psychiatric researchers) and anti-racist mental health activists

AESOP RESEARCH (1) AESOP (Aetiology and Ethnicity in Schizophrenia and Psychoses); funded by Medical Research Council –Nottingham, Bristol, South East London –All subjects who made contact with mental health services because of a 1 st episode of any probable psychosis, non-psychotic mania, or bi-polar disorder –16-64 years of age –Ethnicity: presentation of clinical information, blind to ethnicity of subject, to panel of psychiatrists, with variety of ethnic groups represented

AESOP RESEARCH (2) Very high IRR (Incidence Rate Ratios) in both African Caribbeans (for both schizophrenia 9.1, manic psychosis 8.0) and Black Africans (schizophrenia 5.8, manic psychosis 6.2) in men and women IRRs modestly increased in other ethnic minority groups including rates for depressive psychosis and other psychoses in all minority ethnic groups. Raised rates evident in all age groups

AESOP’s CLAIMS Ethnic disparities are indications of real ‘mental illnesses’ not methodological artefact of research or misdiagnosis All minority ethnic groups at increased risk for all psychotic illnesses but African Caribbeans and Black Africans appear to be at especially high risk for both schizophrenia and mania High rates linked to high levels of social adversity and disadvantage (unemployment; lone parent status; lower social class; low perceived social support; poverty (e.g. car ownership); limited primary social support; urbanicity Either (a) Additional risk factors are operating in African-Caribbeans and Black Africans or these factors are particularly prevalent in these groups, and (b) such factors increase risk for schizophrenia and mania in these groups Related but distinct effects of social deprivation –Control for SES reduces, but does not explain ethnic disparities; residual race/ethnic effect independent of SES Ethnic disparities are not synonymous with inequality About illness not about misdiagnosis and institutional racism

AESOP’s CLAIMS TO AUTHORITY/CREDIBILITY Hypothesis driven scientific methodology: rooted in clinical expertise and latest statistical research techniques Replication, replication, replication... Studies blind to ethnicity, so there was no misdiagnosis Vindication of previous research about Black African-Caribbeans and schizophrenia. –Activists increasingly accept high rates are real –Suggests activists were ideologically driven because of protracted resistance, claiming attribution of greater susceptibility of Black people is/was a form of racialization Institutional racism cannot explain enduring nature of ethnic disparities; ethnic disparities do not = institutional racism Address as public health matter not institutional racism & and race/ethnic inequality De-couple: matter of high rates is separate from delivery of psychiatric services

ACTIVIST RESPONSES TO AESOP (1) Social factors: so what’s new? What about 2 nd generation Black African Caribbeans? Why Black African Caribbeans and not South Asians with similar/greater levels of social disadvantage/adversity AESOPs fixation with using ethnicity as an explanatory variable –creates discourse of difference and risk –creates narrative of susceptibility which stigmatises emotional distress and racializes Black people AESOPs construct of race/ethnicity problematic: really about processes of misdiagnosis & racialization AESOPs construct of psychoses/schizophrenia problematic: what is ‘schizophrenia’? What is ‘mental illness’?; critical psychiatry Race/ethnic equality: what about race/ethnic disparities in access to services, use of services, and outcomes of services; that is experience

ACTIVIST RESPONSES TO AESOP (2) AESOPs idea of public health problem: ignores race/ethnic inequality; Delivering Race Equality (DRE) government programme De-coupling so-called facts about high rates from experiences of services creates an enforced division –It obscures the complex cause and effect relationship between incidence in the community and admission, diagnosis, and treatment within services –It implies that what goes on in the ‘community’ (perceptions of Black people; stop and search etc) has nothing to do with what goes on inside services –It insulates the production of psychiatric research from criticism and de-politicises matters of race/ethnic equality

POST-AESOP RESPONSES TO ACTIVISTS YES BUT! Clear distinction between science and politics/ideology; activists are in wrong camp AESOP = science; Activists = politics/ideology “Science is about how the world is; politics is about how the world should be” “It is a MIGRANT issue. All migrant groups have high rates of psychosis” It is not a minority ethnic issue “There is nothing to explain: higher incidence explains higher detention” ‘Don’t shoot the messenger’: AESOP driven by the scientific method

KNOWLEDGE/POLICY BROKERS Psychiatrists: mediating btw epidemiologists and activists in favour of activists OR psychiatry Psychiatrists: mediating between psychiatry and ‘critical psychiatry’ Alliances between critical psychiatrists and activists to critique epidemiology Epidemiologists: little involvement with policy professionals Activist alliances with policy professionals in favour of race/ethnic equality

TRANSLATING RESEARCH INTO POLICY AND PRACTICE (1) Possibilities for Consensus, Alliances and Change Delivering Race Equality (DRE): –epidemiologists – ‘waste of time’ –activists – well intentioned, ‘tinkering’ with systemic problems Brokers between epidemiologists and activists: Stop ‘race blame game’! Let’s agree that there is a problem – high levels of emotional distress - and do something about it Is the antagonism between epidemiologists and activists misplaced?; do they both have little power to change anything? Looking in the wrong place? - the political economy of mental health and illness

TRANSLATING RESEARCH INTO POLICY AND PRACTICE (2) Limitations How ethnic disparities should be described, explained, or ‘known’ through research What ‘race/ethnicity’ and ‘schizophrenia’ are, or mean What constitutes permissible evidence about ethnic disparities What constitutes evidential criteria and how it should be interpreted Nature and constitution of objectivity Relationship between science and politics How to reconcile empirical robustness, objectivity, equality, morality, justice, redemption, professional interests, human rights Getting from descriptive ‘is’ to the prescriptive ‘ought’

AESOP’S FABLE: THE SCORPION AND THE FROG The Scorpion and the Frog A scorpion and a frog meet on the bank of a stream and the scorpion asks the frog to carry him across on its back. The frog asks, "How do I know you won't sting me?" The scorpion says, "Because if I do, I will die too." The frog is satisfied, and they set out, but in midstream, the scorpion stings the frog. The frog feels the onset of paralysis and starts to sink, knowing they both will drown, but has just enough time to gasp "Why?" Replies the scorpion: "Its my nature...“