The classic children’s story ‘The Emperor’s New Clothes’, catches the imagination with its allegory of logical fallacies and fear of and failure to criticise. Still, it is the way it classically embodies society’s seditious reticence, a state where everyone refuses to accept the obvious truth that is equally confronting. In this post I want to explore this in the context of health inequalities and racism. Reports of health inequalities and racism are not folktales, told by those seeking to cause trouble or complain; their consequences are matters of life and death. This is particularly the case for ethnic minority communities in the UK. In recent weeks, three events have brought home this point: In March 2023 The Evening Standard reported on research that found the burden of and increased exposure to COVID-19 led ethnic minorities experiencing ‘higher rates of severe illness and death from COVID-19 because of their greater risk of becoming infected’. Two months later BBC News reported that the retiring Chief Constable of Police Scotland, Sir Iain Livingstone, admitted the force is institutionally racist and discriminatory. This has been followed by report in The Guardian of research that found racial disparities in every single police force in England in issuing covid rules breaches, with people from minority ethnic backgrounds being more likely to be subject to fines.
These three separate reports, from different institutional contexts share at their core, ways in which the question of racism, inequalities, and the welfare of ethnic minorities, have been for a long time “the emperor’s new clothes”- everyone knows racism exists and impacts minorities, but no one feels able or wants to name it and do anything about it.
Recently as part of a wider research project examining the care experiences of older people living with dementia in acute hospital settings, I have been reflecting on how health inequalities relate to the experiences of ethnic minority communities in the UK. This has involved examining the ways in which research has historically attempted to make sense of and understand health inequalities experienced by ethnic minority communities.
Perhaps unsurprising, in the UK older people from ethnic minority communities are more likely to have poor access to health services and are also more likely than their white peers to experience poor health and wellbeing. Older people from minority ethnic groups are under-represented populations identified by health and social care services and are often diagnosed at a later stage of their illness, or not at all, compared to their white counterparts. Elders from African and African-Caribbean communities are thought to be more likely to access services late, when their condition has reached a point of ‘crisis’. Often described by research as ‘delayed support seeking’ however, ‘lack of recognition’ of their needs may be the issue. The consequences of their perceived delayed support seeking means they are at high risk of hospitalisation, deterioration, being referred to long term care, which are all also associated with high mortality rates.
For over 3 decades research attempting to make sense of health inequalities experienced by people living with dementia within ethnic minority communities has highlighted several issues. These conclude that health inequalities persist in these communities due to lack of knowledge about dementia, lack of engagement and awareness of dementia from within these communities and health issues in general, with the remedy for these deficits always being more ‘education’. Others have pointed to cultural attitudes and beliefs as responsible, within this body of research cultures and beliefs, including religious belief and their influence on perceptions of ill health and how it should be treated, including seeking alternative explanations instead of medical support, are thought to lead to delayed support seeking and ill health. In response researchers again call for ‘education’ within these communities to enlighten the communities about dementia and other health issues. Others still have pointed to language barriers. Pointing to ways in which racism may implicitly be embedded in these research conclusions.
However, these findings are not new, having been so well reported and repeated, that they have become embedded in academic and policy parlance for over 30 years. Despite these findings, discourse, and ‘education’ programs nothing has changed. Among the limitations of explanations has been the lack of focus on how institutions that provide care could equally be ignorant of how best to engage with ethnic minority communities. There has also been a tendency to negate how the history of these institutions enmeshed in racism impact perceptions of and willingness by ethnic minority communities to engage with them. Or indeed how this research history has itself informed racist cultures of practice that deter or even exclude minorities from policy focus. However, this truth, is difficult to confront. Instead, it is comfortable to lay the burden for change on ethnic minority communities themselves, rather than on government or wider public structures which, in Sir Ian Livingstone’s words, must acknowledge that issues of racism and bigotry exist in public institutions – including academic research institutions – as vital for bringing about real change.
There is another issue with the established field of research. the current evidence on health inequalities also provides generalised understanding of the experiences of these communities, of what causes, and brings about health inequalities. This brings to mind what Bhopal called “a Blackbox epidemiological approach.” By which he referred to a tendency to aggregate ethnic groups as homogenous, with explanations for ill health presented as purely embedded in the communities themselves. Blackbox epidemiology is a metaphor for approaches to research that locates the individual in a box and then ignores rather than examines the inside of the box. This approach leads to a deficit model, negating the complex socio-political context in which health is experienced and defined. The tendence to focus on cultures, ignorance, beliefs, and attitudes to health within ethnic minority communities has only increased the risk of stereotyping ethnic minority communities while masking failures by services to ensure provision of appropriate services to ethnic minority communities. There is also the preoccupation with re-producing comparative analysis in which ethnic minorities are constantly compared with white populations to highlight differences. While this may be useful for policy purposes, it only risks reinforcing racial stereotypes as inequalities are loosely framed as inert in these communities, negating the complexities surrounding experiences of health and illness.
In conclusion, to bring about change and address inequalities there is need to confront the truth; that racism is real it permeates the very public institutions meant to serve and protect marginalised communities. Health inequalities equally are real, with significant implications for racialised communities. Rather than continue holding on to the convenient views that reinforce stereotypes and lays the burden for change on ethnic minority communities. We need approaches to research and methodologies that seek to focus the sociological gaze on institutions while also examining the complexities and nuances of health issues as they relate to individual communities rather than “Blackbox” all ethnic minorities as a homogenous group. In doing so, we can challenge results that deliver collusions and research findings that focus on locating inequalities as within individuals and communities.