Knowing what we know
Despite decades of research on ethnic inequalities and severe mental illnesses, it is surprising how few of the findings are well known by the public and many specialists. It is as if evidence of injustice or intractable and painful lived experiences is forgotten, lost from conscious awareness, and deprioritised for more immediate and operationally easier business objectives.
Within the health and social care sectors serving people with severe mental illnesses (including NGOs, health departments, health and social care providers) knowledge about ethnic inequalities and severe mental illness exists in silos, and the role of multiple disadvantage is often scattered across different agencies each tackling a different problem like homelessness, or poverty, or nutrition, or racism, or immigration etc. There is little shared explanation of the causes or agreement on solutions to ethnic inequalities, and this lack of consensus is -in part- driven by each institution developing its own position or description of issues and solutions.
This is done through unique sanctioned and taboo vocabularies and narratives through which the problems are constructed. These representations incorporate analysis and solutions configured often by those in positions of power and influence about those feeling disempowered and disadvantaged. These representations are also themselves influenced by societal and institutional sources of inequality, and do not always connect with the fullest range of lived experiences of people with severe mental illnesses or those facing multiple disadvantages.
What blocks knowledge flows?
Knowledge is gathered through many processes, either surveys, interviews, academic and lay research, or groups of people –usually those considered experts-coming together to share their views. These are then synthesised into reports. These products are not sufficiently well shared with those who can use them. Knowledge can be attacked and dismissed on the basis of disputed facts or disputed interpretations or of varying forms of bias and uncertainty. The way knowledge about ethnic inequalities is presented includes implicit assumptions about what is illness, what are the sources of inequality, and what political and social processes are invoked, sometimes impinging on and triggering core ideologies: that mental illnesses are all social, or more genetic than social; or that racism and prejudice underlie inequality and equally popular a view that racism as nothing to do with ethnic inequalities in mental illness.
That is, the knowledge is not accepted or received if it disrupts preconceived notions or core values; and it is not always trusted perhaps as the source represents those in authority or in positions of power, or the proposed solutions exclude or negate the lived experience of intended beneficiaries. How can we increase the trust in knowledge? This involves re-thinking ways of producing knowledge, but also ways of understanding knowledge as a source of power and at the same time as a public good or resource for all.
Epistemic trust is essential to social learning and transmission of culture, yet is often most absent among those who have experienced multiple disadvantages or traumatic lives. The process through which knowledge is produced and shared has to nurture and recognise the need for epistemic trust across different stakeholders and between them, related to their life experiences and their ability and willingness to work together.
Marginalised group, the homeless, some ethnic minority groups, those living in poverty are unlikely to trust knowledge that does not speak to their lived experience, and where the vocabulary is not one of their choosing. Just as professionals and government bodies might dismiss their opinions, they may well dismiss and feel alienated from official bodies, and so all experience disempowerment that is overcome through judgement and other political and resourcing influences.
The receptivity to knowledge about ethnic inequalities relies on the perspective of the reader, the recipient, or beneficiary of knowledge; it relies on their own views about culture, race, ethnicity and models of mind and illness; his or her ideological starting point may not be open to re-thinking their ostensibly rational information. This dynamic itself reinforces the institutionalised and structural sources of disadvantage, if we are only able to hear and acknowledge evidence that fits preconceived ideas. Topics, like ethnic inequalities and mental illness, and severe and multiple disadvantage provoke deeply hidden and powerful emotive sentiments; like views on torture, or global conflicts, or terrorism, or race relations; or histories of inter-group violence, unjust treatment of one group over another, race riots, homicide, slavery for example; all seem to trigger latent ideological positions that block new knowledge. In such instances, new knowledge is experienced as a threat to all that we hold sacred and a threat to our personal and group identities. Knowledge comes to represent truth and survival, and in itself becomes the vector of powerful forces of oppression or remedy-conflicts are then displaced into negotiations around knowledge and narratives of causal explanation and solutions.
Marginalised communities and those facing multiple disadvantages do not wish to be victims, yet they are also often not able to access precious resources, including knowledge. Amartya Sen’s work is refreshing in this regard. He takes the specific instance of extreme levels of poverty and inequality in India, and in this context, proposes that poverty is deprivation in the capability to live a good life. Then, development is understood as an expansion of capabilities. This approach has been adopted by the United Nations, and its value is in promoting capabilities and strengths of those in positions of poverty and disempowerment. However, the lifting of institutional and societal sources of structural disadvantage, in my view, are still necessary conditions of building capability. Capability is also invoked in theories of change, alongside opportunities and motivation. Collaborative leadership is a skill that supports appropriate systems behaviours.
So, how can we characterise progressive processes?
- Doubt and uncertainty are essential in the scientific endeavour, especially when facing with intractable problems in society, for example, the ‘wicked’ problem of inequalities.
- New forms of science are needed that link evidence generation closely to in-depth narratives and stories of beneficiaries, using multiple forms to both explore and present the evidence; for example, through performance, theatre, visual and creative arts alongside conventional research endeavours.
- Knowledge flows have to be trusted, in terms of the reputations, values, integrity, and methodological expertise of those producing it.
- Knowledge is a form of power, but it is also a commodity that should be available and known to all, in a form that is usable. Reducing complex types of knowledge to simpler implications for practice or policy is a priority for most research organisations.
- Knowledge will not be acted upon unless it is trusted, in terms of the vocabulary, grasping the insider or emic perspective of the recipient, and then bridging across several groups of interest if it is to galvanise consensus on which action might be taken. This inability to trust is also a product of multiple traumatic experiences and chronic adversity, and so the very people who should have a say in their care and destiny are unable to make use of knowledge resources.
- Collaborative leadership is needed to be cognisant of historical and collective influences, powerful underlying identities and ideologies that shape the production, interpretation and representation of knowledge.
- Only through a willingness of all parties to adopt collaborative leadership styles including accepting uncertainty, willingness to revise ones position and to tackle polarised and fixed ideologies, and then promote epistemic trust across systems, will we create more effective methods and processes to tackle inequalities.
- We will need to systematically tackle institutional and societal sources of structural disadvantage and build capabilities in individuals, families, places, cultures and society.
Professor Kamaldeep Bhui CBE MD FRCPsych
Synergi Collaborative Centre
Centre for Psychiatry at the Wolfson Institute of Preventive, Barts & The London School of Medicine of Medicine and Dentistry, Queen Mary University of London. East London NHS Foundation Trust.
 See the work of Peter Fonagy: http://societyforpsychotherapy.org/epistemic-trust-psychopathology-and-the-great-psychotherapy-debate/.
 See the work of Amartya Sen: http://www.iep.utm.edu/sen-cap/