Janeway’s dilemma: coercive treatment and human rights in ‘eating disorders’ inpatient units

In 2017 the UN Human Rights Council published the “Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”. The secretariat prefaces the report by observing the Rapporteur’s call “for a shift in the paradigm, based on the recurrence of human rights violations in mental health settings, all too often affecting persons with intellectual, cognitive and psychosocial disabilities” (p.1).

The report goes on to say that “Informed consent is a core element of the right to health, both as a freedom and an integral safeguard to its enjoyment” (p.14). The right to consent to treatment includes the right to refuse treatment but “the proliferation of paternalistic mental health legislation and lack of alternatives has made medical coercion commonplace” (p.14). Justifications for using coercion based on risk and dangerousness and medical necessity are subjective and “exclusive to psychiatrists, who work in systems that lack the clinical tools to try non-coercive options” (p.14).

The report continues:

“Coercion in psychiatry perpetuates power imbalances in care relationships, causes mistrust, exacerbates stigma and discrimination and has made many turn away, fearful of seeking help within mainstream mental health services. Considering that the right to health is now understood within the framework of the Convention on the Rights of Persons with Disabilities [CRPD], immediate action is required to radically reduce medical coercion and facilitate the move towards an end to all forced psychiatric treatment and confinement. In that connection, States must not permit substitute decision-makers to provide consent on behalf of persons with disabilities on decisions that concern their physical or mental integrity; instead, support should be provided at all times for them to make decisions, including in emergency and crisis situations.” (p.15)

The report acknowledges the radical nature of these proposals and the concerns of stakeholders including medical practitioners and proceeds nonetheless to invite States to move towards an “absolute ban on all forms of non-consensual measures … Instead of using legal or ethical arguments to justify the status quo, concerted efforts are needed to abandon it. Failure to take immediate measures towards such a change is no longer acceptable” (p.15)

The implications of this report have been seized upon by service user and survivor groups (see for example Point 7 of the Executive Summary of the Kindred Minds BME Manifesto at https://www.nsun.org.uk/news/bme-mental-health-service-users-launch-manifesto) but mental health services are not perhaps falling over themselves in their haste to catch up.

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The reference to ‘psychosocial disabilities’ includes the contested diagnostic fields of ‘personality disorder’ and ‘eating disorder’ and my business in this blog is with the latter category. For more than fifteen years now I have been working as a psychotherapist on an inpatient ‘adult eating disorders’ unit and for the last seven or so of these years I’ve been leading the psychological therapies team there.

The ‘symptom’ being treated is starvation and the treatment being enforced is refeeding. Psychological therapies are understood to play a central role in supporting this process and/or in supporting the sufferer to undergo the intervention. In my role I am therefore unambiguously party to and implicated in this enforced treatment. This treatment is possibly often life-saving and life-restoring and yet is experienced as a terrifying intrusion, one to be resisted at times by any means possible, by many of the individuals who receive it – and now it has been proclaimed to be part of a widespread and endemic abuse of the human rights of those same individuals.

When I first arrived on that ward, more than fifteen years ago, coercive treatments under the Mental Health Act were very rare (I emphasise here that it is adults I am thinking of and the particular dynamics of adolescent units, although of course also covered by the Rapporteur’s findings, are outside my authority to comment upon). Adult patients in those days were on some psychological level ‘volunteering’ to undergo the intervention, in the hope of making a full medical recovery from malnutrition and from the distress that drove the troubled or troublesome food practices to begin with.

Nowadays 30-60% of patients at any one time are detained under MHA s.3 for compulsory treatment for their ‘disorder’ (specifically, anorexia nervosa, for other manifestations of eating distress are very rarely funded for this kind of unit). Coercion is therefore more explicitly medico-legal than it used to be, even though refeeding was always carried out across a power differential. And according to the Special Rapporteur, the coercive aspect of ‘eating disorder’ treatment is therefore more explicitly in contravention of international law.

In this blog I do not propose to argue for or against the findings and recommendations of the Special Rapporteur. I propose to treat them as a given and to look at the treatments I have been party to and the ethical issues they have always raised in this particular new light. Historic moments like the publication of the report to the Human Rights Council do and must give pause for thought and one question in particular has been niggling away at the back of my mind:

What can the fourth season of Star Trek: Voyager teach us about the ethical limits and excesses and the psychosocial dynamics of coercive treatment for ‘eating disorders’ on inpatient units?

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Well, I know you’ve been asking this very same question … and I don’t mean at all to be flippant about so deadly and deathly serious a subject. But sometimes material from literature and popular culture may serve as useful analogy or parable and I don’t want to blog about a ‘real life’ case study – for reasons I hope are self-evident.

So I hope you’ll bear with me, Trekkies and non-Trekkies alike, while we journey into the 24th century and the Delta Quadrant, 70,000 light years away from Earth, where we find the crew of the starship Voyager, under the command of the intrepid Captain Janeway, stranded far from home, making their way through unknown swathes of space and hostile predators, of whom the most significant for our purposes is The Borg, a hive of drone organisms who anthropophagically assimilate the technologies of alien species via enforced assimilation, turning enslaved individuals into cybernetically and surgically transformed fellow-drones within the Collective in pursuit of an idealised technological and socio-political perfection.

Now when I describe them thus, they don’t sound like a very sympathetic bunch, but you have to remember that the Borg drones have been subjected to coerced medical procedures in order to become Borg. They are already traumatised, colonised, subjected: made abject. They are victims-turned-predators, like a conscripted child army brainwashed into the massacre of alien villagers.

In their predatory and compassionless nature, they are very different indeed from the sufferers and survivors who pass through the door of the ward on which I work. But nonetheless I crave the reader’s indulgence not to be offended if I ask you (why? well, please bear with me a moment) to understand them not as the super-bad guys of the Star Trek mythology but as traumatised subjects with complex post-traumatic stress disorders; to imagine them as life forms with inalienable (although not conceptually individual) rights of their own – to see that they are fearfully perceived as ‘other’ in the sense of ‘belonging to an out-group’ – to see them as fiercely loyal to their sisterhood – in general to note that ‘their’ groupishness is different to ‘ours’ but that groupish they certainly are, chasing mirages of perfection together as one …

I ask you to allow, in short, for purposes of relating my parable, that this image might serve, in translation, as playful but respectful representation of the out-group in the Delta Quadrant of ‘severe and enduring’ eating distress …

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As our story begins, a drone has become isolated from the Borg Hive and taken into inpatient treatment in the Voyager Sickbay. The drone’s appellation is ‘Seven of Nine’. In our story there are no junior psychiatrists – but there is an Emergency Medical Hologram (EMH) (a long story!) and he is presenting a tricky case to the Captain/Consultant Janeway …

EMH: I’m afraid we have a decision to make. A difficult one. Her human immune system has reasserted itself with a vengeance. … Her life is in danger. I have little recourse but to remove the Borg technology.
JANEWAY: Which is the last thing Seven of Nine would want.
EMH: Hence the difficult decision. If a patient told me not to treat them, even if the situation were life-threatening, I would be ethically obligated to honour that request.
JANEWAY: This is no ordinary patient. She may have been raised by Borg, raised to think like a Borg, but she’s with us now. And underneath all that technology she is a human being, whether she’s ready to accept that or not. And until she is ready, someone has to make the decisions for her. Proceed with the surgery.

Here then is the central ethical dilemma. Seven of Nine is being held to ‘lack capacity’. Janeway is acting paternalistically, on behalf of the Federation, in what she feels is a construction of Seven of Nine’s best interests – even though the Voyager MDT is clear that Seven of Nine would not want this. Her junior doctor evokes the CRPD – ‘we must respect the wishes of the patient’ – but Janeway feels she has to ‘hold the hope’ of a full recovery for her captive/patient. Seven of Nine cannot be allowed to remain (cybernetically) disordered – she is at risk of organ failure – a radical intervention is mandated, whether or not in compliance with Intergalactic Law … [I hope by now it’s clearer why I pleaded with the reader to bear with me]

In post-operative recovery, Janeway does a bedside visit …

JANEWAY: I’ve met Borg who were freed from the Collective. It wasn’t easy for them to accept their individuality, but in time they did. You’re no different. Granted, you were assimilated at a very young age, and your transition may be more difficult, but it will happen.
SEVEN: If it does happen, we will become fully human?
JANEWAY: Yes, I hope so.
SEVEN: We will be autonomous. Independent.
JANEWAY: That’s what individuality is all about.
SEVEN: If at that time we choose to return to the Collective, will you permit it?
JANEWAY: I don’t think you’ll want to do that.
SEVEN: You would deny us the choice as you deny us now. You have imprisoned us in the name of humanity, yet you will not grant us your most cherished human right. To choose our own fate. You are hypocritical, manipulative. We do not want to be what you are. Return us to the Collective!
JANEWAY: You lost the capacity to make a rational choice the moment you were assimilated. They took that from you, and until I’m convinced you’ve gotten it back, I’m making the choice for you. You’re staying here.
SEVEN: Then you are no different than the Borg.

Janeway here is channeling Creon in Sophocles’ tragedy, seeking to persuade Antigone that she would be making the pro-social choice in choosing life and conformity over autonomy in death (I write about this a lot in other places). She tries to soothe Seven of Nine with the wisdom of her experience – she has seen others recover. Seven of Nine, from this particular perspective, is a serious case – the disorder took her over at a very young age – but in time she will learn that it’s worth coming in from the cold on Federation terms, even though she doesn’t see it that way right now.

But Seven of Nine, still using ‘we’ in her Borg identification with the Hive, has a perceptive question: if you get me better, so that I am then able to exercise my free will, will you allow me to return to the disordered out-group? Janeway is boxed in by the logic of her own position: she upholds the full recovery model and reasserts Seven of Nine’s lack of capacity. No change to the care plan, sorry, it’s all in your best interests, says Janeway … and Seven of Nine sees it clearly in the moment: I recognise you – you are my abuser.

A little later on, it’s time for Seven of Nine to start therapy – her body is restored somewhat towards a standard of normal functioning – her sense of panic has subsided – she is more compliant, although still held in seclusion – she has entered cautiously into a relationship with her treating team …

SEVEN: … I cannot function this way. Alone.
JANEWAY: You’re not alone. I’m willing to help you.
SEVEN: If that’s true, you won’t do this to me. Take me back to my own kind.
JANEWAY: You are with your own kind. Humans.
SEVEN: I don’t remember being human. I don’t know what it is to be human.
(Janeway picks up a [tablet] and lowers the forcefield.)
SEVEN: What are you doing?
JANEWAY: I’m coming in.
SEVEN: I’ll kill you.
JANEWAY: I don’t think you will.
(Janeway enters the cell, staying out of arm’s reach. She shows Seven the picture from the Personnel File [of Seven of Nine as a human girl] on the [tablet].)
JANEWAY:  Do you remember her? Her name was Annika Hansen … There’s still a lot we don’t know about her. Did she have any siblings? Who were her friends? Where did she go to school? What was her favourite colour?
(Seven looks at the picture for a while, then slaps it out of Janeway’s hand.)
SEVEN: Irrelevant! Take me back to the Borg.
JANEWAY: I can’t do that.
SEVEN: So quiet. One voice.
JANEWAY: One voice can be stronger than a thousand voices. Your mind is independent now, with its own unique identity.
SEVEN: You are forcing that identity upon me. It’s not mine.
JANEWAY: Oh yes, it is. I’m just giving you back what was stolen from you. The existence you were denied, the child who never had a chance. That life is yours to live now.

In a scene that seems to me to evoke forensic psychotherapy settings and seclusion facilities across many pathways, Janeway seeks, within a custodial frame, to engage Seven of Nine’s ambivalence and her repressed memories of her ‘pre-morbid’ condition before the trauma of assimilation by the Borg. Janeway is offering recovery but Seven of Nine not only can’t imagine what that might be like but is not at all sure there’s anything wrong with her that she needs to recover from. The emotional temperature goes up: Seven of Nine is aroused and agitated and distressed and confused but she can still clearly discern Janeway’s agenda, pressing upon her an identity that once was hers but with which she does not and cannot at present identify.

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There’s lots more where this comes from, as Seven of Nine’s ‘recovery journey’ continues and Janeway and her crew gradually increase her privileges and reward her progress with initially fearful and reluctant but gradually more trusting processes and mechanisms of social inclusion. As time goes on, Seven of Nine’s expertise by lived experience will come in handy, when Voyager comes across the Borg again …

But for now, it’s time to leave them to their travels and to come back to the Special Rapporteur and his recommendations. Where does this report leave the coercive framework for inpatient eating disorders treatment? The Rapporteur acknowledges the intense ‘stakeholder’ anxieties stirred by the prospect of radical change. Where would these units be, after all, without their medico-legal technologies?

I have seen people in Seven of Nine’s situation (by allegory and analogy) who, like her, came to feel grateful that their lives were saved by coercive interventions. I have seen others whose lives were saved in the strict (and short term) sense of the word but blighted at the emotional and existential level by the horror of the treatment they received ‘in their best interests’.

Obviously, I have no authority to make an ethical ruling here. The Rapporteur says that “instead of using legal or ethical arguments to justify the status quo, concerted efforts are needed to abandon it”. His position appeals to me and scares me in equal measure. But the point of this blog reduces to one question that inches its way into consciousness, in various different guises:

What if Janeway had wrestled a little deeper with the question of Seven of Nine’s fear of losing everything in treatment? Janeway makes a case for the ‘special patient’ – she pursues a justification for the excess of forced treatment by saying that Seven of Nine is ‘no ordinary patient’. But what if there are never ‘special’ reasons for using force? This is the axiom that we are being required here to accept.

The Rapporteur says we “lack the clinical tools to try non-coercive options”. What if the increasing power and potency and even sophistication of our medico-legal technologies (the Mental Health Act; the Mental Capacity Act; Community Treatment Orders; naso-gastric feeding; PEG feeding; pharmaceuticals and so forth) has deskilled us in some simpler forms of intervention? Suppose our coercive muscles are so well developed, that our engagement skills have become rather flaccid and feeble with disuse?

Suppose we invested in developing those skills in what Judith Herman called ‘existential engagement’, instead of falling back in relief, behind our coercive medico-legal redoubts, away from the stresses and strains of open debate? Suppose as many or even more lives might have been saved in creative ways, as have been lost to mishap or suicide under more coercive regimes?

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I don’t know; but I wonder …

 

References

Adlam, J. (2015) ‘Refusal and coercion in the treatment of severe Anorexia Nervosa: the Antigone paradigm’. Psychodynamic Practice, 21 (1), 19-35.                  https://www.researchgate.net/publication/265685587_Refusal_and_coercion_in_the_treatment_of_severe_Anorexia_Nervosa_The_Antigone_paradigm

Herman, J. (1997) Trauma and Recovery: The Aftermath of Violence – From Domestic Abuse to Political Terror. New York: Basic Books.

‘Star Trek: Voyager’ screenplays from http://www.chakoteya.net/Voyager/401.htm

 

 

“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