Between exclusion and colonisation: seeking a place for mad people’s knowledge in academia

Abstract

The omnipresent psychiatric narrative of mental illness has always had its counter-narrative – the life stories of people labelled mad. The relationship between these two accounts has always been one of domination: mad voices have been – and continue to be – not heard, overwritten, silenced or even erased in the course of psychiatric treatment. As survivor researchers who have had these kinds of experiences, we wish to discuss parallels between this tradition and some contemporary academic efforts that claim to disrupt it.

Keywords:

• psychiatric survivors
• disability/mad studies
• narratives
• epistemic injustice
• equal partnership

Introduction

Disability has been transformed over the last generation by the emergence of new discourses to challenge longstanding dominant medicalised individual discourse. What has distinguished these emerging discourses is that the impetus for them has come from disabled people themselves. They have been based on experiential knowledge – people knowing about disability directly through experiencing impairment and being on the receiving end of disabling attitudes and barriers. Similarly, we write from the perspective of a movement that can be seen as part of the wider disabled people’s movement, or a separate movement of its own – the psychiatric system survivors’ movement.

The work of mad-identified scholars and activists can be seen as pursuing a broad aim summarised by Jayasree Kalathil and David Crepaz-Keay (2013; emphasis added) as ‘balancing the overwhelming majority of material written about those who are labelled mad by those who do the labelling and those who study them’. They accurately describe the psychiatric encounter: ‘You give your story, you receive a diagnosis.’ This unequal, often non-transparent and also dishonest exchange goes beyond individual treatment situations and persists in most academic research work about us and our narratives. We often find ourselves giving not just our story but also the knowledge that has emerged from our experiences only to have it re-framed, serving various purposes and different agendas, and ultimately alienated from us (Costa et al. 2012). The fact that these encounters with interested academics happen outside treatment, and that the new interpretation usually makes more sense than the psychiatric one, hardly prevents us from feeling like somebody’s case again. When Sue Estroff (2004) uses her correspondence with a man with a psychiatric history as data, she only provides us with his letters and her interpretation of them as though she was not writing back in between. Most of Gail Hornstein’s (2002, 2009) career and what counts as her scholarly contribution is based on the consumption and recycling of mad people’s stories (Russo 2012). At the same time, we are aware of the valuable accomplishments of non-survivor academics whose work with us – and not on us – is rooted in very different premises and motives (Church 1996, 1997; LeFrancois, Reaume, and Menzies 2013).

Emerging academic interest

The expansion of academic interest in the individual voices of mad people makes us want to reflect on this trend and its implications. We ask ourselves why approaches that at first seem inviting and like they might even help to disrupt psychiatric control over our voices, ultimately resort to marginalising mad people’s own knowledge, and how this happens. This consistent marginalisation particularly applies to our collective knowledge, which rarely gets a place at the ready laid academic table.

Two conferences held in the United Kingdom in 2014 offer good working examples of these kinds of processes. Entitled Alternative Psychiatric Narratives (Birkbeck, University of London, UK)1 and Understanding Epistemic Injustice (University of Bristol, UK),2 these events each appealed, based on their calls for papers, as spaces that would surely welcome and engage with survivor perspectives in the form of our own research and conceptual work. Their programmes made clear, however, that this was not really the case. Despite featuring valuable presentations and interesting discussions, both events reflected a somewhat disappointing trend: the prompt detachment of concepts with considerable emancipatory potential from the realities they claim to illuminate and their reframing as new scholarly disciplines, which soon become ends in themselves. These new fields of inquiry maintain the longstanding academic habit of avoiding a dialogue with subjects of their interest outside traditionally divided research roles. We therefore doubt their overall capability to foster substantive changes within or outside academia.

In his opening lecture at the Birkbeck conference, historian Mathew Thomson introduced the work of anthropologist Geoffrey Gorer as an example of an alternative psychiatric narrative. Having analysed the transcripts of more than 400 psychoanalytic sessions between a therapist and his client, Gorer came up with an account rather different from the psychoanalytic one.3 Although the presentation of this work touched on some fundamental issues such as professional power to shape psychiatric narratives and the relationship between psychiatric accounts and life histories, the complete absence of the client’s perspective could not be overlooked. Certainly any perspective that questions the dominance of psychiatric interpretation can be perceived and promoted as an alternative narrative. This event included several such perspectives, but despite the impressive work behind some of them, they rarely provided due recognition or room for first-person voices – steps we would expect to be fundamental to the notion of an alternative psychiatric narrative.4

The conference on epistemic injustice went even further in its exclusion of not only mad-identified scholars, but also any other voices of direct experience. While including many thought-provoking presentations, this event was prevented – by its very design – from opening up any new answers to the core questions it posed: who is the knower and whose knowledge counts?

Helpful concepts, inconsistent structures?

We think the philosophical concepts of testimonial and hermeneutic injustice (Fricker 2010) are well worth exploring in the context of oppressive psychiatric structures and treatment. These concepts offer good tools for re-assessing and changing knowledge production about madness and distress; they also overlap significantly with survivor researchers’ efforts to challenge the value of distance and neutrality in psychiatric research and expose their epistemic implications (Beresford 2003). Epistemic injustice could thus be a very helpful framework for those faced with the uphill task of making the case for first-person knowledge of madness and distress. This is particularly suggested by the sub-title of Fricker’s book, Power and the Ethics of Knowing. Our overall experience of this conference, however, tells us that this is unlikely to happen. Of the two presentations that tried to apply these concepts to the psychiatric system, neither one was grounded in the work of people who had been on its receiving end – that is, the ones whose knowledge usually does not count. On the contrary, one of these talks by a psychiatrist even highlighted the stigmatising of his whole profession.5

In their presentation on ‘strategies of silencing’, the main organisers of the event (Havi Carel and Ian Kidd) explored epistemic injustice in the healthcare context, asking how to work towards recognition of patient voices. In outlining different ways of doing this, these scholars did acknowledge the work of patients’ organisations. It was clear, however, that they saw this work as categorically separate and different from their own efforts to develop philosophical tools to ‘help people structure their experiences’. The view that there are folks (‘them out there’) who need ‘our’ tools that we should develop for ‘them’ (but without them) underpinned the entire conference. This was particularly evident in the closing plenary, which comprised a brief discussion of the question ‘How can we, as an academic community, help those who need our concepts in their political struggles?’ This is, of course, a legitimate and sensible inquiry. The very way it was posed, however, implied a rather problematic division of two worlds seemingly never meant to come together: the one ‘out there’ where experiences take place; and the closed, insider realm of academics where those experiences become subjects of reflection.

Challenging the past, improving the future

Social science has a long history of surveying the subjects of public policy and offering its own ‘expert’ interpretations of their accounts that it has collected as ‘data’. With emerging state interest in consumerist user involvement resulting from a shift to the right in political ideology (Beresford 2002), service users’ narratives of their experience, as ‘misery (or sometimes ‘heroic’) stories’, began to be added to policy and professional discourses. However with the emergence of their movements, service users rapidly challenged the shortcomings of this approach and sought to offer instead their own analyses of their experience and of the services and systems they encountered and which were imposed upon them.

A key issue for such groups has been gaining equality for their experiential knowledge, research approaches and knowledge claims, and this has so far certainly not been achieved. Conferences like the two described here can be seen to indicate a kind of coming of age of such first-hand experiences. But they also point to new complexities. If the first problem was getting any kind of recognition for such narratives, then now this has begun to be achieved it appears we may have moved on to a further stage when an additional issue emerges. This is how to ensure that they are not just colonised or reduced to a new area for academic activity – taken from the control of their own authors.

It may not be the intention of the scholars without such first-hand ‘outsider’ experience who undertake research on narratives, to take them over, but there do seem to be serious risks of this happening. Then what might have been intended as a challenge to traditional epistemic inequalities and exclusions could actually act to reinforce them. How do we avoid this happening and creating new kinds of exploitation and inequality? What might ethical principles and methodologies for such work look like?

In our view, the first key issue is to raise the problem, as we have sought to here. Second, such academic activity must look more carefully and inclusively at what role those experiencing epistemic injustice can and should play in this development and discourse. How can academia be opened up to the contribution of ‘outsider’ perspectives and ensure that the work towards epistemic justice is undertaken in equal partnership? We now know much about what helps to ensure the inclusion and also what leads to the exclusion of disabled people and other marginalised groups (Beresford 2013; Kalathil 2013; Faulkner 2014).

Those who have been ‘experts’ here traditionally, as researchers, academics, social and political commentators, need to think through their role. Rather than making devalued groups’ narratives merely another subject of their enquiries, or a new field under their direction, they have a chance to ‘authenticate’ service users’ experience through adding their ‘authority’, helping give it credence and legitimacy. The former represents an extension of the devaluing of outsider narratives; the latter offers the prospect of supporting their growth and empowerment.

Mike Oliver’s words in relation to research more generally have a particular resonance here:

We do not investigate something out there, we do not merely deconstruct and reconstruct discourses about our world. Research as production requires us to engage with the world, not distance ourselves from it …Thus the research is not an attempt to change the world through the process of investigation but an attempt to change the world by producing ourselves and others in differing ways from those we have produced before. (Oliver 2009, 116)

This is the issue that future events and activities of this kind must ensure researchers and academics reflect on more and more.

Notes

1 See http://altpsychiatricnarratives.wordpress.com/programme/

2 See http://www.bristol.ac.uk/philosophy/events/2014/260614

3 See the Geoffrey Gorer archive: http://www.sussex.ac.uk/library/speccoll/collection_catalogues/gorer.html

4 The exception in this regard were the contributions of Ali Hutchinson, Aude Fauvel, Anna Sexton and Dolly Sen. The abstracts can be found in the conference programme: http://altpsychiatricnarratives.files.wordpress.com/2014/05/more-detailed-programme2.pdf

5 See Paul Crichton’s handout: http://www.bristol.ac.uk/philosophy/research/epistemic-injustice-2014/paul-crichton-handout.pdf