Conversations on Care and/in the Community: Part II

43 Gordon Square, Birkbeck, University of London

6th June 2019

‘Conversations on Care and/in the Community’ invited researchers and writers from a number of disciplines to engage in a series of conversations surrounding these new social and spatial conditions of care in the twenty-first century. In the second and third conversations of the day, we discussed the practicalities of accessing care, and the importance of telling a different story.

Conversation 2: Gatekeepers, Institutions and the Importance of Storytelling

Diversity of Thought, Neneh Patel
(Cover Illustration of The Colour of Madness)

What is good healthcare and social care? How is it constructed? And what happens in the gaps in provision between health and social care providers?

These questions are key to understanding the contemporary ‘mental health and social care crisis’ and have been at the centre of historian Dr Louse Hide’s research. Hide looks across the whole of the institutional system, suggesting that the split between workhouses and asylums in the 19th Century continues to shape the division between healthcare and social care today. Key to this connection is the problematic transfer of resources from healthcare to social care pots, and the differentiation between what constitutes a problem of health and what constitutes a problem of poverty, for example in relation to adults with severe learning difficulties.

This transfer has been further complicated since 1947, when small private care homes began to be advocated for as an alternative to publicly run facilities. Since then, the private sector for care homes and prisons have expanded massively, with the current ‘care home market’ being worth at £16 billion.

Hide encourages us to view the current health and social care landscape from this historical perspective. And from this perspective she poses an important question: are we starting to experience ‘institutional creep’?

In other words, as we face serious shortages of resources, how far are we going to see a return to largescale institutions to solve the crisis of under-resourced, fragmented health and social care. The question is a disturbing one given first the histories of abuse associated with institutionalisation, and second that we don’t have a firm understanding of how institutional arrangements facilitate abusive behaviours. Hide’s research focusses on this issue, asking what kind of behavioural patterns count as institutionalising, in systems still tarnished by the workhouse system – i.e. by an outlook that significantly de-values means-tested social care in comparison to healthcare. Institutional care spaces have emotional geographies that operate beyond systematic and bureaucratic controls. Is in these fraught emotional spaces that humans are depersonalised and can find themselves victims to abuse.

The emotional geographies of care provision are also at stake in questions of who has access to care and support, which was the focus of writer-contributors Dr Louise Powell, Dr Samara Linton and Rianna Walcott. Powell’s new play Fit for Work demonstrates the experience of gate-keeping during work-capability assessments, and Linton and Walcott’s edited collection The Colour of Madness: exploring BAME mental health in the UK brings together BAME people’s experiences of the mental health system through personal accounts, short stories, essays and poetry.

Both works encourage us to think seriously about what happens when bodies, accents and behaviours don’t conform to the stereotype of the ‘mental health patient’. To enter into the mental health system and to access resources often requires following a script which is predicated on a white, middle class model of affective communication. In other words, it requires a specific performance of distress.

Linton and Walcott for example note expectations around crying during clinical encounters. In some communities, Linton says, people simply will not cry in public no matter how deep their pain or suffering. A lack of tears can then read as a sign of malingering in clinical encounters, as though without the presence of crying a patient, often a Black female patient, could not possibly be experiencing acute distress. These expectations can also become built into therapeutic work. Walcott describes this problem in relation to getting therapy following traumatic experiences of racism. The traditional understanding of trauma as being provoked by a single event (found for example in the PTSD framework) fails account for the ongoing traumatic experience of growing up BAME in a racist culture. As Walcott notes, the therapeutic demand that a patient describe a single original traumatic encounter isn’t possible in this context. How does one reduce the experience of being immersed in a racist environment into a single moment?

When failure to perform distress in a certain way results in failure or lack of treatment, patients end up with the burden of educating their own clinicians and researching and gaming the system in order the receive care. Powell’s play Fit for Work also reveals the imperative for performing distress, by focusing on a particular situation: the Work Capability Assessment interview.

Fit for Work is a duologue, which hones in on the difficulty – perhaps the impossibility –  of adequately performing mental distress in order to receive necessary disability benefits. Writing from a working-class background, Powell emphasises the classist assumptions on which these assessments are conducted. Claimants are required to advocate for themselves in a certain kind of language and have enough confidence and entitlement to contradict the clinical professionals assessing them. At the same time, assessors make ‘informed observations’ in order to disprove the claimants’ accounts, based for example on their language, eloquence and clothing.

Fit for Work holds its audience in the interview space, requiring them to sit through the twists and turns of the assessment in order to understand how markers of class become weaponised against claimants. For Powell theatre is a particularly good means for communicating this – held in the shared space with the performance, audience members are ‘forced’ to engage with what they may usually choose to overlook.

Both Fit for Work and The Colour of Madness crucially articulate stories of mental healthcare that are woefully underrepresented in media and arts. In my own contribution to the conversation, I detailed how major ‘mental health’ plays in the last decade have continued to rest on two major assumptions about mental healthcare: first, that care is readily available in the form of residential institutions, and second that the family home is a fraught but available site for return after healthcare interventions. Mirroring the sanitorium framework of Ibsenite realism, even some of the most experimental approaches to ‘mental health theatre’ remain structured around a binary between mental institution and available bourgeois home. (I focused on Alice Birch’s Anatomy of a Suicide, Ridiculusmus’ The Eradication of Schizophrenia in Western Lapland, and Duncan Mcmillan’s People Places Things. The full argument will be in a future post!)

In this cultural landscape, publications and plays that tell alternative stories are even more important. Story-telling become a means not only of revealing the realities of gate-keeping, but of building new forms of community support, in which service-users can build networks of solidarity with others whose experiences they may share. Walcott and Linton have worked with Project Neon and Kindred Minds to ensure that The Colour of Madness is shared with BME-led service users, and through Project Neon service users can be matched up with stories that may be relevant to their own experience. Powell similarly notes that through touring, Fit for Work has reached beyond traditional and London-centric theatre audiences and programmers. These stories are more than messages to the establishment. They are generative of new connections and communities.

The Colour of Madness is available on Amazon and in book shops.

Fit for Work was recently performed at the Chapel Playhouse, as part of Camden Fringe.

Read ‘Conversations on Care in the Community: Part 1‘.

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