“Nothing about us without us” – notes towards a draft manifesto for survivor-led emancipatory research

“The only true commonwealth is that which is as wide as the universe. I am a citizen of the world” – Diogenes of Sinope

“Education either functions as an instrument which is used to facilitate integration of the younger generation into the logic of the present system and bring about conformity or it becomes the practice of freedom, the means by which men and women deal critically and creatively with reality and discover how to participate in the transformation of their world.” – Paulo Freire, Pedagogy of the Oppressed

 

On a damp and foggy Paris day in December 2017, a small group of two survivor researchers, a philosopher, and a mental health practitioner (that last one was me) attended #ConfCap2017 to discuss and debate issues around the civic and legal and human rights of persons living with disability in the face of societal attempts, in certain circumstances, to restrict their liberty and to force treatment upon them.

We were invited to participate in a seminar/symposium in which we were asked to speak to this theme: ‘Exercice des droits et participation: entre contraintes et accompagnement: Recherche émancipatoire’. We began by considering the implications of Clause (o) from the Preamble to the UN Convention on the Rights of Persons with Disabilities:

“(o) Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them,” …

Some of the philosophical territory was set out and then we spoke about different ways in which our paths as users and/or as providers of mental health services and as activists, writers, researchers and consultants had intersected – how our ‘given’ roles had been creatively blurred in practices of equality in the field of mental health – how ’emancipatory research’ might be an organising idea for some of those practices and what the UNCRPD preamble’s ‘actively involved’ might mean in practice.

It’s these ideas of ’emancipatory research’, which I must confess I only first came across when I received this invitation, and the possible meanings of ‘active involvement’, that I wanted to write about here.

It’s in the very nature of the term ’emancipatory research’ that it would be a very bad idea to attempt to claim or define the term or to appropriate, colonise or enclose the open spaces the term evokes and signposts. Here I just want to see if there’s part of the map that’s not yet been fully charted…

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I didn’t know a lot about the terrain and so I poked around a little and had a couple of pointers from survivor researcher colleagues. I probably missed a whole chunk but here is some of what I found …

In a book published in 2000 called ‘Research and Inequality’, co-editors Humphries, Merten and Truman reviewed arguments for an emancipatory research paradigm and traced some of the theories and discourses interwoven under this heading. They began with the Enlightenment as a movement located in optimism about emancipation (from scholasticism and the tyranny of superstition and religious dogma). They noted the importance and influence of Marxism, feminism, post-structuralism and other similar discourses and they identified research models such as ‘participatory action research’ (whose lineage goes back to Paolo Freire), ’empowerment research’ and ‘collaborative enquiry’ as examples of emancipatory research practice.

For Humphries et al., following Freire, emancipatory research is ‘research which has an explicit concern with ending inequality and taking the side of oppressed and marginalised groups…Knowledge is not just about finding out about the world but about changing it’ (Humphries et al, 2000: p.4.) And Humphries asks an important follow-up question (p. 186): “What does emancipatory research mean if researchers are inevitably implicated in power, so that our efforts to liberate perpetuate the very relations of dominance?”

‘Co-production’ was not so much of a buzzword at the turn of the century but that ethos also carries ’emancipatory’ connotations, at least in theory (instead of ‘us’ the experts by training producing knowledge for ‘them’ the experts by lived experience, let’s ‘we’ join to produce the knowledge ‘together’). Some other time I’ll share our co-produced critique of ‘co-production’ but for now let’s peg it as ’emancipatory lite’.

Jerry Tew (2003) shows how the conventional established discourses around the gold standard (an interestingly outdated term, this) in scientific/medical research paradigms are located in an excluding and objectifying value base and suggests emancipatory research would have as its task:

“To produce evidence and theory (concepts and frameworks) that can enable users and carers to:

  • have a greater awareness of their situation so that they can make informed decisions and choices;
  • have more control over their lives in areas where this may have been taken from them;
  • participate in areas of social, economic, and political life from which they may have been excluded;

and can enable communities and practitioners to:

  • challenge stigma, injustice, social exclusion…” (p. 24)

Emancipation, in any domain, is not a process of continuous progressive trajectory or a question of the quickest route from A to B. There are an increasing number of survivor researchers and experts by both training and lived experience who are making significant contributions in the field. The concept of ‘survivor researcher’ was news to the audience at Paris ConfCap, however, and as Diana Rose, Sarah Carr and Peter Beresford (2018) note: “service users, survivors and their organisations are pre-defined as consultants in research and knowledge-making and not positioned as leaders, knowledge-makers or researchers themselves. We do not appear to be permitted to enter the same terrain or space as ‘real’ researchers.”

There is some ‘active involvement’, in other words, within the possible meaning of the UNCRPD, but it’s the kind of involvement that mostly comes from being ‘included’ in someone else’s project…

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Here is possibly where the United Nations again comes in handy. Bear with me while I reproduce what they say a bit.

The ‘Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’ (2017) proclaims (p. 6) that

“21. The promotion and protection of human rights in mental health is reliant upon a redistribution of power in the clinical, research and public policy settings.”

and goes on to recommend (p. 20):

“92. To address the imbalance of the biomedical approach in mental health services, the Special Rapporteur recommends that:

(a) States take immediate measures to establish inclusive and meaningful participatory frameworks in the design of and decision-making around public policy, to include, inter alia, psychologists, social workers, nurses, users of services, civil society and those living in poverty and in the most vulnerable situations;

(b) States and other relevant stakeholders, including academic institutions, recalibrate mental health research priorities to promote independent, qualitative and participatory social science research and research platforms, exploring alternative service models that are non-coercive;

(c) States partner with academic institutions to address the knowledge gap in rights-based and evidence-based mental health within medical education.”

So that’s a fairly clear rights-based mandate and indeed instruction to break up established monopolistic discourses determining research and knowledge production in the field of psychosocial disability (which term is broadly defined under the UNCRPD in a way that includes mental health issues and the contested domains of ‘personality disorder’, ‘eating disorder’, post-traumatic syndromes of various other kinds, etc).

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At ConfCap 2017 my colleagues and I looked back to the inspirational emancipatory pedagogy of Joseph Jacotot, concerning whom the contemporary French philosopher Jacques Rancière has written so eloquently. Jacotot, exiled to Flanders after the restoration of the French monarchy in 1815, discovered that he could teach French when speaking no Flemish even though his pupils spoke Flemish but knew no French.

Jacotot concluded from this experience that the role of the ‘master’ in relation to the ‘pupil’ needed to be entirely rethought and that “we are all equal in our intellect and common humanity”. Rancière critiques processes of social inclusion in which equality is constructed as a goal to be worked towards, arguing instead that we might simply assume equality from the outset and see how that changes our practice.

We also thought about the Democratic Therapeutic Community tradition in the UK since World War Two, beginning with a famous experiment in which Wilfred Bion, then an army psychiatrist in charge of the rehab wing of a military psychiatric hospital full of shell-shocked ‘soldiers who happen to be patients’, decided that his unit was in disarray and that the rehab task was hopeless unless the ailment could be displayed to the group as a group problem.

Bion formed an experimental therapeutic community centred around a daily parade ground meeting and invited the men to investigate their problems of discipline in wartime themselves, declining to exercise in any predictable way the medical or military authority vested in his role. The direct descendant of this approach was the Henderson Hospital Democratic Therapeutic Community, founded in 1947, which was the treatment centre in and around which, much later on, the paths of my colleagues and I converged.

At ConfCap 2017 we put the question whether this tradition of emancipatory practices of equality could be maintained and developed and we listed some of the ways in which we might be understood in different ways to have succeeded in producing knowledge together under this rubric and how this process has arguably become more emancipatory over time, at least in certain dimensions.

By this I particularly mean, that I was fairly clearly self-defining as project leader in my own early forays into research alongside survivors, whereas the roles have become gradually more ‘blurred’ (in therapeutic community terminology) to the point that recent and planned future ‘productions’ are either located in a practice of equality or may be understood as survivor-led.

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What then do I think I am doing, writing this blog and (for example) not even naming my colleagues? Well let me say first of all that I have not mentioned names because I am not assuming agreement with the train of thought I have set out here although I am very conscious of how strongly influenced it is by the collaborative work and I am not at all claiming thoughts as ‘mine’.

I also began by saying I was not going to make the mistake of staking out territory for myself or for my definitions of anything. Emancipatory research is a broad field and there might be something about this blog that justifies inclusion under that broad head, even if I am writing as expert by training.

What I want to do by way of conclusion is to jot down a few notes towards a manifesto or charter of some kind that might help to identify and mark ‘Survivor-led emancipatory research’ as an important and valued and differentiated subset of ’emancipatory research’ generally … and then see where it goes …

So – in that spirit – survivor-led emancipatory research is or might be understood:

(1) to be survivor led in design, implementation and publication
(2) to be embedded in flattened hierarchies and practices of equality that value expertise by lived experience
(3) to be concerned with, and to uphold a free and open and fearless culture of enquiry into, inequalities and dynamics of force within the system of care
(4) to renounce diagnostic models and categorisations that objectify the person in distress and not to objectify its own research subjects
(5) to place a value on deploying the self of the researcher
(6) to value communities of learning and to enlist experts by training in various fields as and when this may be helpful
(7) to value and privilege rainbow literature over grey literature

(8) to be understood as an anti-colonial practice and to resist and oppose discourses that would seek to ‘include’ it

(9) to be and to be recognised to be a form of knowledge production on equal terms with other such forms

(10)…..?

 

References

Paolo Freire ([1970] 1996) Pedagogy of the Oppressed. London: Penguin.

Jacques Rancière ([1987] 1991) The Ignorant Schoolmaster: Five Lessons in Intellectual Emancipation. Stanford, CA: Stanford University Press.

Diana Rose, Sarah Carr & Peter Beresford (2018): ‘Widening cross-disciplinary research for mental health’: what is missing from the Research Councils UK mental health agenda?, Disability & Society. DOI: 10.1080/09687599.2018.1423907

Jerry Tew (2003) Emancipatory research in mental health, in “Where you stand affects your point of view. Emancipatory approaches to mental health research. Notes from Social Perspectives Network Study Day 12 June 2003” pp. 24-28

Carole Truman, Donna Mertens, Beth Humphries (eds) (2000). Research and Inequality. London: UCL.

Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health (2017) UN General Assembly – A/HRC/35/21 https://documents-dds-ny.un.org/doc/UNDOC/GEN/G17/076/04/PDF/G1707604.pdf?OpenElement

UN Convention on the Rights of Persons with Disabilities (2006) https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

 

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