Mad Knowledges and User-Led Research (The Politics of Mental Health and Illness) 3031075501, 9783031075506

Table of contents :
Prologue
A Note on Terminology
Who Are ‘the Mad’?
Who Am I?
References
Acknowledgements
Praise for Mad Knowledges and User-Led Research
Contents
Abbreviations
Part I: Setting the Scene
1: What Does Madness Articulate?
Background
When Madness Begins to Speak What Does ‘It’ Say?
Mobilising as Speaking Back?
Non-uniformity
Who Speaks?
The Underground
The Field
The ‘Mainstreams’ of Survivor Voices—Psychiatry
The Academy and ‘Psy’ Research
Speaking Back to Austerity
Conclusion
References
Unclassified References
2: Mental Challenges as Constitutive of Marginalisation?
Background
Collectives
The Clinical Encounter
Out of the Hospital
Can Communities be Developed?
Psychiatric Facilities and Policies as Obstacles to Forming Groups
Survivors as a ‘Marginalised Community’
Counter-Narratives from the Mainstream
Activism
What Is to be Done?
Conclusion
References
Part II: User Involvement in Research—England as a Case Study
3: History of Patient and Public Involvement in England
Background and Summary
Language and Representation
Who Is the Public?
Can I Apply?
What Is ‘Meaningful’ Involvement?
Power
Changes in Structures
Research by ‘Lay’ People Outside Official Structures
Hidden from PPI—Lay Research
Conclusion
References
4: Research and Practice or What About the Wild?
The Problems
Scope
Impact: The Beginning
The Question of ‘Impact’ in Involvement Activities
What Is Meant by the Term ‘Impact’? Two Approaches
Evidence-Based Medicine (EbM)
Science and Technology Studies
Survivor Research and Change
The Fundamental Difference
Where Does Madness Sit in the PPI Terrain?
Back to ‘Impact’
What Happens When PPI Happens?
The Secret of Process
Process Evaluations
Going Beyond PPI
Conclusion
References
5: Working with Others and ‘Coproduction’
Background
Does Everybody Agree?
Addressing the Field
Relevant Themes
Settings, Partners and Mental Health
Historical Aspects of Coproduction
Examples of Coproduction?
The Costs of Coproduction?
Partners and Allies
Power Again
Conclusion
References
Part III: Foundational Categories and User-Led Research
6: Experience as a Foundation of Knowledge-Making: What’s in a Name?
Background
Process
Naming
Terminology, Identity and ‘Who Counts’
Lived Experience
Disability Under Erasure
From Soft to Strong and Back Again
Survivordom
A Third Way?
Implications of Names
Experts and How Should We Talk to Them?
The Move to Lived Experience
Activism and Knowledge-Making
Conclusion
References
7: Experience: What’s in a Foundational Category?
Background
Examples from the Literature
Whose Experiences Does Research Need?
Mental Health Specifically
Diversity
Lived Experience: What Is It?
Liminal Identities in Liminal Spaces
Individual and Collective Experience
Conclusion: Experience in Context
References
8: Specific Projects Led by Service Users
Background
Being a User/Survivor Researcher
Example 1: Consumer/Patient-Centred Systematic Reviews
Analysis from the Present
Example 2: Participatory Research
User-Generated Outcome Measures
Outcome Measures
VOICE
Delving into the Conversations
Participatory Research and Power
Ethics
Community Validation
Modifying the Model
Is There a ‘Community’ of Mental Health Service Users/Survivors?
Conclusion
References
Part IV: Guiding Principles
9: Intersectionality and Mental Life Disturbed
Background
Approach
Women and Madness
Practice
Mad Politics
Feminist Therapy and Structural Violence
Racialisation and Madness in the West
The Sharp End of Psychiatry
A White Survivor Movement
Problems
Conclusion
References
10: Conclusion
Theory
Conditions for Silencing Madness
Mental Health and Meaning in the West
War
Trauma
Not All Meaning Is Therapeutic
If Madness Is Meaningful What Are Its Conditions?
The Routledge International Handbook of Mad Studies
The Social Model of Disability
Psychosocial Disability
Reasonable Accommodations
What Is Madness?
Activism and Last Words
Joining up Conditions
Implications for Research
Activism as Knowledge—A Provocation
Conclusion
References
Correction to: Conclusion
Correction to:
Index

Citation preview

THE POLITICS OF MENTAL HEALTH AND ILLNESS

Mad Knowledges and User-Led Research

Diana Rose

The Politics of Mental Health and Illness

Series Editor Bruce Cohen Sociology University of Auckland Auckland, New Zealand

The Politics of Mental Health and Illness conceptualises the western mental health system as a social, economic, political, and cultural project which cannot be adequately theorised without considering wider societal and structural issues such as professional power, labelling and deviance, ideological and social control, consumption, capital, and self-governance. Engaging with both social theory and empirical evidence, and situated at the intersections of critical psychiatry, sociology, anthropology, social psychology, social work, history, media studies, and the health and education sciences, the series offers academics, researchers, postgraduate students, and practitioners new and innovative monographs and edited collections with which to contest and challenge the taken-for-granted understandings of psychiatry and the mental health system currently progressed in western society. Research topics for the collection may include: aspects of the medicalisation and/or pharmaceuticalisation of everyday life; psy-professional power and knowledge production; psychopolitics and the expansion of talk therapies; the biomedical model and the future of psychiatric nosology; the marketisation of mental health discourse; social media and self-diagnosing behaviour; capitalism and psychiatric violence; and specific analyses of psy-professionals and their practices from a variety of locations (including prisons, workplaces, addiction clinics, the military, schools, the home, and general hospitals). As the first book series to explicitly encourage critical contributions in the area of mental health and illness, we welcome scholarship from a wide range of different theoretical and empirical perspectives. If you would like to discuss a book idea prior to submitting a proposal please contact the Series Editor, Dr Bruce M.  Z. Cohen, via the Commissioning Editor, Beth Farrow ([email protected]).

Diana Susan Rose

Mad Knowledges and User-Led Research

Diana Susan Rose Australian National University Canberra, ACT, Australia

ISSN 2731-5266     ISSN 2731-5274 (electronic) The Politics of Mental Health and Illness ISBN 978-3-031-07550-6    ISBN 978-3-031-07551-3 (eBook) https://doi.org/10.1007/978-3-031-07551-3 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Switzerland AG 2022, corrected publication 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover illustration: Malte Mueller / Getty Images This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

I dedicate this book to the memory of Peter Campbell Activist, Poet, Historian and Dear Friend 1949–2022

Prologue

The previous section comprised a Table of Contents. It, hopefully, orients the reader. But already this sketch contains implicit arguments which will be more evident to those familiar with the field than to those for whom it is new. There is nothing unusual about this. Although usually implicit, and sometimes denied, all such descriptive accounts are selective in topics covered, methods preferred, underlying epistemologies and usually a set of values as well. In this Prologue, I would like to be very explicit about this multi-layered selectivity, at the levels of both groups and individuals, largely to be clear about my standpoint. This book could make a ‘weak’ claim, although even 20 years ago it would have been difficult to defend. That is, that the world of mental health can never be fully grasped unless the perspectives and voices of those who receive ministrations (by doctors, by priests, by counsellors, by healers); that these voices should be present in any depiction of what madness is and how it is responded to (Bowl, 1996; Burns et al., 2009). This claim implies that we could ‘add’ in these perspectives, that they would make the picture more ‘complete’, but not disturb any other components of the whole. This, I contend, is not possible as a whole literature on ‘interdisciplinarity’ testifies (P. Jones et al., 2010; Stember, 1991). So I propose the more radical, but also more transparent, approach. The central and organising claim of this book is that mental health knowledges and practices would be turned on their head if they were vii

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controlled by service users/survivors such that including these voices would reconfigure everything else. And changes in knowledge and practice are intimately related to how power functions, including within mental health where ‘patients’ have historically been without power, with silencing a basic strategy (Foucault, 1967). How we think about madness would change radically; the hidden assumptions of mainstream psychiatry would be surfaced and seen to be wanting; the universalist nature of psychiatry’s claims would be replaced by attention to how local ecologies shape experience and knowledge of mental distress according to where persons are in time and space (Grech & Soldatic, 2016; Haraway, 1988). We would understand that there is no ‘typical’ mad individual, exemplifying a diagnostic category, but people positioned in complex spaces of intersectional differences. Importantly, this entails that the supports associated with this new knowledge, indeed which sometimes give rise to it, would radically transform practice from the level of inter-individual interactions to group knowledge (Faulkner & Kalathil, 2012). In fact, I shall argue that any new knowledge here needs to step out of health. Ultimately, we want to know the extent to which the phenomena which makes someone a ‘suitable case for treatment’ is primarily a question of ‘health’ (Joseph, 2019). This book is possible because the task has already begun; begun by many differently and yet with congruity. For centuries now the mad have been spoken and written about. The assumption has been that they have nothing to say for themselves; their talk is incoherent; their thinking disordered; their behaviour unpredictable and their knowledge of themselves completely absent (Still & Velody, 2012). They have no reason; no insight; they are just crazies. All these assumed attributes position the mad as the antithesis of the characteristics required for rigorous knowledge-making, or science, as well as incapable of the construction of systems of supports. But in this book, I will show why and how all these assumptions are flawed and their relentless negativity will be questioned too by showing what we can do by and for ourselves (D Rose, 2017, 2018). So, this book is not neutral and I will be completely transparent about this. I am arguing for the consolidation of an emerging discipline that exists both inside and outside the academy. Contrary to the opinions of

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some, this approach can be rigorous methodologically and conceptually, just in a different way. This will be demonstrated.

A Note on Terminology I have been liberal about terminology but sometimes used the term ‘mad’, thinking it the most generic to be found and also with an association with politics. Until someone from East Africa told me it was one of the biggest insults to be found in their language and had very little to do with mental states. Although terms abound in this field, none is free of connotations either in terms of meaning or policy: consumer; client; service user; person with psychosocial disabilities; survivor; loony; mad. We will come across them all, compare, contrast and unpick the semantic and political ramifications of each. But as is obvious from the first sentence, none is universally applicable. That is significant and will be discussed in Chap. 6.

Who Are ‘the Mad’? I write as if the mad are an homogenous group; all madness and the responses to it are the same. Even using this term frequently, as I have, misses the point just highlighted above with respect to terminology. Equally, the assumption of homogeneity misses a critical issue both for change and power dynamics and for the arguments of this book. This issue is intersectionality: not a double jeopardy that adds together madness and Blackness, or madness and gender, but the generation of new positionalities that are not additive but synergistic. One is not simply mad and a woman, or mad and black, a mad black man is a new positionality (Crenshaw, 1991). These intersectional positions and identities affect different aspects of psychiatric discourse in the West, or Global North. Those designated mad have grappled with how to conceptualise this and its often damaging consequences, including within survivor spaces (N.  Jones & Kelly, 2015). And of course there are differences between us—from well-known activists to those who people long-stay

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hostels, who constitute the ‘revolving door’, who spend their lives in forensic units. These people have their own forms of knowledge. The critique of the ‘medical model’ is well known but I think it needs to be taken in a different direction and focus on what the ‘psy’ disciplines do not do. In focusing on aspects of a person’s derangement at an individual level, all references to ‘life’ are ignored or read through a psychopathological lens. The person is ripped from their material and social settings and treated as an isolate, a pathological one. But the world does not stop and start with the Global North. And this is my first limitation. I have never received treatment in the Global South and no matter how much I read I cannot remedy that situation. So rather than draw on a partial explanation I decided I am not equipped to write about mental distress and responses to it in the Global South. Another gap follows from this. The growth of a movement which sees remedy in law means I had to be brief in consideration of the United Nations Convention of Persons with disabilities (CRPD). People deemed mad in these different parts of the globe have reacted very differently to the CRPD and although I ‘know’ something I don’t know enough. The Global South and CRPD will be invoked when necessary. I may not know enough about the Global South but I do know about the psychiatric model that some are seeking to disseminate across the world. But the key point is this: history and geography are crucial in shaping experiences of madness and of responses to it as well as research. As Western psychiatry and its knowledges and treatments once again seek to unify the world of the mad, claiming that all suffer from the same disorders and can be effectively treated in the same way, we see the tendency to universality embodied in the very terminology used: ‘generalisability’, ‘scaling up’ and ‘Implementation Science’. Knowledge and power are intertwined and represented linguistically. The book will challenge this (systematised) approach at multiple levels. It will do so using knowledge generated by people positioned as mad themselves and so unsettle established power relations (Beresford & Wallcraft, 1997; Campbell, 1997; Costa et  al., 2012; Davar, 2013). But it must be noted that when it comes to involvement with other bodies, more has been written about those bodies than about survivors. And more non-survivors have written about the group

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deemed mad than has that group itself. We have a lot of second-­hand knowledge. Lost in translation. On the other hand, long before this present instance, there are theories and methods developed in the Global South that, suitably altered, have been used in the terrain under consideration, most notably that of Paulo Freire (Freire, 1996). The impact of Freire on methodologies preferred by user researchers and educators cannot be underestimated although sometimes the difference between the ‘oppressed’ he sought to liberate and ours is elided. It should not, then, come as a surprise that various forms of new knowledge-making and practice change are happening now in the Global South. They receive little exposure for the simple reason that they are not promulgated by self-styled experts. Except that those deemed mad are experts and in so doing disrupt the definition of expertise itself.

Who Am I? This book is partly a work of history, although it is true that the history is short—less than half a century. But there is more to history than this as it involves memory—the memory of the author, and this is not straightforward (King, 2000). This book will be shaped by my selections and my history together with the people who have impacted it. This last part is critical: everything I think, everything I write has been shaped very fundamentally by other survivors, other discourses and the institutions this ‘I’ has encountered. However, this is neither a memoir nor is it autoethnography. To begin with, memory is not stable, neither is it linear. It loops, it has tangents, some things become fundamental but even they can be discarded in light of new knowledge and practice. And in light of changes in power. Further, and this could be true of autoethnography, it is a story which is infused by not just my knowledge and intellect but by my passions and by my suffering as well as access to new narratives and new people that are not just what ‘changed my mind’ but also recast the past in the process. I will be transparent about how personal/collective/intellectual events impacted me strongly to shape, revise and criticise arguments, at several points (Viney et al., 2015). I will try to show how this impacts knowledge and

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activism and use the examples of user-led research in Chap. 8 to illustrate these points. Most chapters have one or two ‘anecdotes’. That is things done to or witnessed by me that align with the particular argument I am making. I submit that as such they are a form of evidence. On the personal dimension itself, I have been mad and utterly powerless because of it—held down and injected with tranquilising drugs that keep you asleep for a day, been subject to insulin coma treatment and ECT, spent days in seclusion with no other soul to talk to and, yes, been cruel to those close to me because I either did not recognise them or believed they wished harm upon me. But neither am I alone in those experiences. What is called ‘peer support’ hinges on the sharing of experiences and that has been much more important as a constant than anything medical. There is also the utterly boring side: watching the clock as the minutes pass; lying all day in front of my gas fire and talking to no one for weeks as I had no words, hiding from others in every institutional space. It then takes a bit of a nerve to write about how people are coming out of such situations and creating knowledge that works for them; knowledge that is finding its way around the world in immense variety and not always congruently (TCI Asia Pacific, 2015). But it is always at the same time collective and situated in a particular time and space. Speaking about these experiences, finding a voice, belonging to a collective—these are the conditions for re-framing what has happened. It was foundational for one of the first and long-lasting survivor texts—Judi Chamberlin’s On Our Own (Chamberlin, 1978). Time, like memory, is neither linear nor has it a telos: it is a serial process of (re) iteration. But in keeping with the distance from homogeneity and universality, it is clear that within this marginalised group people such as myself hold privilege: a white woman and Western educated to a high degree (Diana Rose & Kalathil, 2019). I have to be mindful that other experiences are very different without in any way resorting to pity— including of myself. There are fractures and power differences within the survivor movement and amongst knowledge-makers in the West. Most significantly, it is evidently a White user movement and this background needs surfacing and unpicking (Bell, 2010). Add the very particular history and current conditions for people with psychosocial disabilities in the Global South and the privilege is even more apparent and has

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consequences (Drew et  al., 2011). Yet, to go back, I have been there, indeed sometimes am still there, and hope never have lost that grounding in certain practices as well as the support of others who are not by any means all in academic or clinical spaces. In sum, this is a story of how service users/survivors or people with psychosocial disabilities began to understand their experiences differently and collectively, to make new knowledge that was mostly met with great resistance, varying according to local conditions. But there was a drive, a persistence, and now levels of creation have been attained that might just be unassailable, not amenable to silencing or invisibility any more but beginning to be established discourses and practices. ‘Experience’, then, figures in this book not individually nor phenomenologically but as a term that has become foundational for the forms of knowledge and practice generated by the mad. An organising concept but also a controversial one. The other limitation of this book is that it is focused to a degree on England. There are intellectual reasons for this in that for about 25 years England was held as a ‘model’ for public involvement in research. This is coming to a ragged close so another reason for including it is as lessons to be learned from. And there are many such lessons. The initiative was not a success in my view, it had implicit and explicit opposition, but knowing why might prevent repetition of mistakes. And, to be blunt, I ‘know’ the underside of Mad Knowledge in England because I have been part of it. So I can surface aspects that might be closed to others. Of course, I make reference to work from other countries but it would be wrong to say their place is as central. And I should conclude by recognising my own fault lines. I am not an easy ‘peer’ to support, something that is never said so I might as well own up. Every word I have written is written in truth but it is another matter to enact it. And I have written only a little on survivor leadership because when things get sticky, they really do, I for one cannot heal the rifts and this impacts on the work that is done. There are details—I am disabled and have a habit of staring death in the face. It is just too much. For some people anyway. Together with the experience of humiliation at the hands of psychiatry, this makes the leap from ‘patient’ to ‘Professor’ almost impossible. Some can do it but that person is not me. From

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‘disempowerment’ to ‘empowerment’ is a process with internal and external features. I hope this paragraph is not too personal. Publishers usually ask you to identify a ‘gap in knowledge’. Mad knowledge constitutes such a gap and it is absent for a reason. That reason is that ‘mad science’ is an oxymoron. Let us destabilise this notion. To do so requires drawing on many different theoretical ideas and empirical work. But it is neither the sum nor the replication of all of these. It is something new.

References Bell, C. (2010). Is disability studies actually white disability studies. The disability studies reader, 5, 402–410. Beresford, P., & Wallcraft, J. (1997). Psychiatric system survivors and emancipatory research: issues, overlaps and differences. In C.  Barnes & G.  Mercer (Eds.), Doing disability research (pp.  67–87). Leeds: The Disability Press / University of Leeds. Bowl, R. (1996). Involving service users in mental health services: Social services departments and the National Health Service and Community Care Act 1990. Journal of Mental Health, 5(3), 287–304. Burns, T., Catty, J., White, S., Clement, S., Ellis, G., Jones, I. R., … Wykes, T. (2009). Continuity of care in mental health: Understanding and measuring a complex phenomenon. Psychological Medicine, 39(2), 313–323. https:// doi.org/10.1017/s0033291708003747 Campbell, J. (1997). How consumers/survivors are evaluating the quality of psychiatric care. Evaluation Review, 21(3), 357–363. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. New York: McGraw-Hill. Costa, L., Voronka, J., Landry, D., Reid, J., Mcfarlane, B., Reville, D., & Church, K. (2012). “Recovering our Stories”: A Small Act of Resistance. Studies in Social Justice, 6(1), 85. Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 1241–1299. Davar, B. (2013). From mental illness to disability: Choices for women users/ survivors of psychiatry in self and identity constructions. In R.  Addlakha (Ed.), Disability studies in India: Global discourses, local realities (pp. 333–360). New Dehli, Abingdon: Routledge.

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Drew, N., Funk, M., Tang, S., Lamichhane, J., Chávez, E., Katontoka, S., … Saraceno, B. (2011). Human rights violations of people with mental and psychosocial disabilities: An unresolved global crisis. The Lancet, 378(9803), 1664–1675. Faulkner, A., & Kalathil, J. (2012). The freedom to be, the chance to dream: Preserving user-led peer support in mental health. London: Together for Mental Wellbeing. Foucault, M. (1967). Madness and civilisation: A history of insanity in the age of reason. London: Penguin. Freire, P. (1996). Pedagogy of the oppressed (revised). New York: Continuum. Grech, S., & Soldatic, K. (2016). Disability in the global south. Cham: Springer. Haraway, D. (1988). Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist studies, 14(3), 575–599. Jones, N., & Kelly, T. (Eds.). (2015). Inconvenient complications: On the heterogeneities of madness and their relationship to disability. Bristol: Policy Press. Jones, P., Selby, D., & Sterling, S. (2010). More than the sum of their parts? Interdisciplinarity and sustainability. In Sustainability education (pp. 33–53): Routledge. Joseph, A.  J. (2019). Constituting “Lived Experience” discourses in mental health: The ethics of racialized identification/representation and the erasure of intergeneration colonial violence. Journal of Mental Health Ethics, 10, 1. King, N. (2000). Memory, narrative, identity: Remembering the self. Edinburgh University Press. Rose, D. (2017). Theoretical perspectives on user involvement in mental health research. In A.-M. Stokken & E. Willumsen (Eds.), Brukerstemmer, praksisforskning og innovasjon (pp. 76–88). Norway: Portal. Rose, D. (2018). Renewing epistemologies: Service user knowledge. In P.  Beresford & S.  Carr (Eds.), Social policy first hand: An international Introduction to Participatory Social Welfare (pp. 132–141). Bristol: Policy Press. Rose, D., & Kalathil, J. J. (2019). Power, privilege and knowledge: The untenable promise of co-production in mental ‘Health’. Frontiers in Sociology, 4, 57. Stember, M. (1991). Advancing the social sciences through the interdisciplinary enterprise. The Social Science Journal, 28(1), 1–14. Still, A., & Velody, I. (2012). Rewriting the history of madness: Studies in Foucault’s Histoire de la Folie’. Routledge. TCI Asia Pacific (2015). The Bali declaration. Retrieved from Bangkok. Viney, W., Callard, F., & Woods, A. (2015). Critical medical humanities: Embracing entanglement, taking risks. Journal of Medical Humanities, 41(1), 2–7.

Acknowledgements

I would like to thank Tina Coldham for giving up her time and wisdom for the interview that informed Chap. 3 and Alison Faulkner who read and commented on that chapter. Then there are all the people, too numerous to name, whose thoughts I have drawn on here even if they disagree with the use I have made of them. I’d like to thank LP for keeping me grounded. Most of all I would like to thank my partner Nikolas Rose without whom this book would not have been written and who has unfailingly supported me through some very crazy times. The staff at Palgrave were always encouraging and in particular Isobel Cowper Coles Beth Farrow, and Sarah Hills. And finally, thanks to my two peer reviewers who pushed me further than I was originally prepared to go. The gaps and mistakes are, of course, my responsibility. Declaration of permissions Thanks to Pete Fleischmann and Graham Thornicroft for permission to discuss their work at length in Chaps. 5 and 4, respectively.

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Praise for Mad Knowledges and User-Led Research “In this book, Diana Rose asks ‘what does madness articulate?’ Whose voices are heard or silenced, trusted or relegated to symptoms, what counts as evidence, who is a trusted narrator of madness. In short she digs deeply and widely into how knowledge of madness is produced, by whom, in what ways, and to what ends. Her account is both erudite and infused with her own and others’ experiences. The reader is recognized and in conversation with the author who anticipates questions and other points of view. Rose attends to language, categories, speakers and those who listen, and who tells what to whom. She speaks for and about the rise of studied resistance to and confrontation with medicalized and psychiatrized knowledge and treatment of madness. In the end, the reader has become acquainted with the polyphonous voices and versions of madness, community, advocacy, peer research, and the social and political landscape within which we find ourselves. I will assign this book to psychiatry residents and medical students because it will change the way they understand their patients and how they practice medicine.” —Sue E Estroff, Professor in the Department of Social Medicine, UNC School of Medicine, Chapel Hill, USA

Contents

Part I Setting the Scene   1 1 What  Does Madness Articulate?  3 Background   3 When Madness Begins to Speak What Does ‘It’ Say?    4 Mobilising as Speaking Back?    5 Non-uniformity   7 Who Speaks?   9 The Underground  10 The Field  11 The ‘Mainstreams’ of Survivor Voices—Psychiatry   11 The Academy and ‘Psy’ Research   13 Speaking Back to Austerity   16 Conclusion  23 References  25 2 Mental  Challenges as Constitutive of Marginalisation? 31 Background  31 Collectives  33 The Clinical Encounter   34 Out of the Hospital   40 Can Communities be Developed?   41 xxi

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Psychiatric Facilities and Policies as Obstacles to Forming Groups  42 Survivors as a ‘Marginalised Community’   47 Counter-Narratives from the Mainstream   50 Activism  51 What Is to be Done?   54 Conclusion  56 References  57 Part II User Involvement in Research—England as a Case Study  63 3 History  of Patient and Public Involvement in England 65 Background and Summary   65 Language and Representation   72 Who Is the Public?   73 Can I Apply?   73 What Is ‘Meaningful’ Involvement?   75 Power  77 Changes in Structures   78 Research by ‘Lay’ People Outside Official Structures   82 Hidden from PPI—Lay Research   82 Conclusion  86 References  87 4 Research  and Practice or What About the Wild? 91 The Problems  91 Scope  93 Impact: The Beginning   93 The Question of ‘Impact’ in Involvement Activities   94 What Is Meant by the Term ‘Impact’? Two Approaches   96 Evidence-Based Medicine (EbM)   97 Science and Technology Studies   99 Survivor Research and Change  102 The Fundamental Difference  103

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Where Does Madness Sit in the PPI Terrain?  104 Back to ‘Impact’  106 What Happens When PPI Happens?  110 The Secret of Process  111 Process Evaluations  112 Going Beyond PPI  115 Conclusion 117 References 117 5 Working  with Others and ‘Coproduction’125 Background 125 Does Everybody Agree?  127 Addressing the Field  128 Relevant Themes  129 Settings, Partners and Mental Health  133 Historical Aspects of Coproduction  135 Examples of Coproduction?  137 The Costs of Coproduction?  142 Partners and Allies  143 Power Again  146 Conclusion 147 References 149 Part III Foundational Categories and User-­Led Research 155 6 Experience  as a Foundation of Knowledge-Making: What’s in a Name?157 Background 157 Process 158 Naming 159 Terminology, Identity and ‘Who Counts’  161 Lived Experience  162 Disability Under Erasure  163 From Soft to Strong and Back Again  163 Survivordom 164 A Third Way?  165

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Implications of Names  166 Experts and How Should We Talk to Them?  168 The Move to Lived Experience  169 Activism and Knowledge-Making  172 Conclusion 172 References 173 7 Experience:  What’s in a Foundational Category?177 Background 177 Examples from the Literature  179 Whose Experiences Does Research Need?  187 Mental Health Specifically  188 Diversity 190 Lived Experience: What Is It?  191 Liminal Identities in Liminal Spaces  194 Individual and Collective Experience  197 Conclusion: Experience in Context  200 References 202 8 Specific  Projects Led by Service Users207 Background 207 Being a User/Survivor Researcher  209 Example 1: Consumer/Patient-Centred Systematic Reviews  214 Analysis from the Present  220 Example 2: Participatory Research  224 User-Generated Outcome Measures  226 Outcome Measures  227 VOICE 228 Delving into the Conversations  233 Participatory Research and Power  233 Ethics 235 Community Validation  237 Modifying the Model  237

 Contents 

xxv

Is There a ‘Community’ of Mental Health Service Users/ Survivors? 238 Conclusion 240 References 241 Part IV Guiding Principles 249 9 Intersectionality  and Mental Life Disturbed251 Background 251 Approach 253 Women and Madness  253 Practice 257 Mad Politics  259 Feminist Therapy and Structural Violence  260 Racialisation and Madness in the West  261 The Sharp End of Psychiatry  266 A White Survivor Movement  270 Problems 272 Conclusion 273 References 274 10 C  onclusion281 Theory 281 Conditions for Silencing Madness  283 Mental Health and Meaning in the West  287 War 287 Trauma 289 Not All Meaning Is Therapeutic  291 If Madness Is Meaningful What Are Its Conditions?  294 The Routledge International Handbook of Mad Studies  297 The Social Model of Disability  300 Psychosocial Disability  302 Reasonable Accommodations  303 What Is Madness?  304 Activism and Last Words  307

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Joining up Conditions  308 Implications for Research  309 Activism as Knowledge—A Provocation  310 Conclusion 311 References 312 C  orrection to: ConclusionC1 I ndex319

Abbreviations

DH ENUSP EbE EbM INVOLVE NHS NIHR NIMH NSUN PAR PCORI PG-PROM PPI RCT SR SRN STS SUiA VOICE WNUSP

Department of Health (England) European Network of (ex) Users and Survivors of Psychiatry Expert by Experience Evidence-based Medicine Lay programme for NIHR National Health Service (UK) National Institute for Health Research National Institute for Mental Health (USA) National Survivor and User Network (UK) Participatory Action Research Patient-Centered Outcomes Research Institute (USA) Patient-Generated Patient-Reported Outcome Measure Patient and Public Involvement (England) Randomised Controlled Trial Systematic Review Survivor Research Network (England) Science and Technology Studies Service Users in Academia (Australia) Views of Inpatient CarE (measure) World Network of Users and Survivors of Psychiatry

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Part I Setting the Scene

1 What Does Madness Articulate?

Background This chapter title is impossible because madness is (in)articulate, (in) coherent, (un)imaginable and (un)speakable. How does one articulate the inarticulate? How does one even write such a sentence? Perhaps by flipping the lens and by showing how this inarticulacy is not inherent to ‘madness’, but is created: The constitution of madness as a mental illness thrusts into oblivion all those stammered imperfect words without fixed syntax in which the exchange between madness and reason was made. The language of psychiatry, which is a monologue of reason about madness, has been established only on the basis of that silence (Foucault, 1967, p. ix, emphasis author)

I am invoking Foucault as an important thinker but also because he is being quite specific here. It is psychiatry that has constituted madness as a mental illness, its practice renders the mad person the antithesis of reason, and on that basis the speech of the mad person is cut off. It is this last part that is the most important. This book—Foucault’s Madness and Civilisation (later History of Madness, 2013)—has had many critics, for © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_1

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romanticising madness whilst at the same time being not just Eurocentric but specifically French in content (Porter, 1988, 1990; Still & Velody, 1992). But it is a place to start; a dangerous place no doubt because of what it omits, of where it is situated. It is a place to start but not an origin. Its significance lies in the acknowledgement that there exists mad knowledge, but it has been silenced, rendered illegible for three centuries. And the form it takes now is barely known. We will not end with Foucault though or, if he is present, it will be as one voice amongst many.

When Madness Begins to Speak What Does ‘It’ Say? The ‘mad’ are not homogeneous, and those who speak out or whisper are a distinct group. I will call them ‘activists’, which is not to say others have nothing to do with finding voices. Such mad people have written accounts and analysis almost since this silencing was initiated. But they were isolated, hidden (literally) accounts that were fragmented in time and place. And there were drawings and stitchings and musical scores too. Oral records are largely absent. The writings and other representations by mad men and women have also been re-cast in the service of other discourses and movements, such as feminism, concealing again that it was their ‘treatment’ they were writing about (Allen, 2009). Historically, however, these communications have been brought together and serve as a reminder that there were holes in the long silence that prevailed (Hornstein, 2017). But the process of developing mad speech and knowledge to be opened here definitively does not go back to the Inquisition; it veers from it and a version ‘begins’ in the closing 25 years of the last century. So the timespan of the book starts at a particular time; its historical context has many tributaries, but, in the Global North, it is united by a certain politics, a politics that challenges psychiatry—to reform or to dismantle—and society as well. There exists a different account of the ‘social movement’ that contested psychiatry, but the actors are different, the mad have a subordinate place and the politics is tepid and hidden (Crossley, 2006). Furthermore, Crossley misunderstood how the modern user movement arose. He positions the survivor movement as a development of ‘Anti-­ Psychiatry’ (well-known figures such as Ronald Laing), which it certainly

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was not (The Survivors History Group, 2012). Nevertheless, Crossley’s book can function as the ‘official history’ of challenges to psychiatry, which is also to say that this book will centre the voices of madness and will be transparent about values and politics. There is another discourse too that does not align with psychiatry at all but seeks to develop new supports that survivors themselves have originated (Staddon, 2015). Against psychiatry; at a tangent to it.

Mobilising as Speaking Back? In the USA, the Netherlands, the UK, New Zealand, the Nordic countries and beyond, throughout the 1970s and early 1980s, groups of inmates and ex-inmates began to form, groups where people talked together about their experiences of the asylum and of asylum closure, the harms they had suffered and what might make this right. Seminal works included Judi Chamberlin and Jean Campbell from the USA (Chamberlin, 1978, Chamberlin, 1990, Campbell 2005) who wrote from politically different platforms; Peter Campbell, Colin Gell, Peter Beresford and Jan Wallcraft from the UK (Barnes & Gell, 2011; Beresford & Wallcraft, 1997; Campbell, 1985; Campbell, 1996); Mary O’Hagan from New Zealand (O’Hagan, 1993) and Wouter van der Graaf from the Netherlands (Schene & Faber, 2001). These texts are all authored by what I will now begin to refer to as ‘survivors’ as well as ‘activists’—survivors of the mental health system. The use of the term ‘inmate’, particularly in the USA, is important and terminology will ebb and flow as we proceed and this will be addressed in detail in Chap. 6. This period is important because it was the time of deinstitutionalisation, the emptying of the asylums in many places, those institutions which at their height contained thousands of people in each. Deinstitutionalisation was one condition for ex-­inmates to organise although ‘little acts of resistance’ had always been present (Vinthagen & Johansson, 2013). But organising outside the big institutions was different. The nature of survivor organisations was also inflected by the ‘culture of protest’ that characterised this era: feminism, civil rights, gay liberation, consciousness-raising and solidarity above all. There was a ‘Mad Liberation Front’ in some states in the USA. Some wanted nothing

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to do with psychiatry, such as Judi Chamberlin; some were content with collaborating, such as Colin Gell, and some had a particular project as in the case of Wouter van der Graaf. This range of writings shows that at a minimum survivors are ‘finding a voice’ (Fisher & Spiro, 2010). The name of the central organisation in the UK was stronger: Survivors Speak Out. In a particular place and time and for a particular group, a voice or rather voices have been recovered and refreshed. No longer are we silenced. Poetry, song and painting found their place too. But we will find in the pages to come that silencing is a many-headed hydra. This is a particular choice of the way that madness can articulate—in dialogue and protest as the basis for change. There are many other ways and they will figure. The singular most important feature is that this is madness articulating collectively and with the goal of understanding and changing a situation mainly of subjugation. This is ‘On Our Own Terms’ (Wallcraft et al., 2003). And it is situated, situated politically, in time and in place, and these attributes will change as the political changes, locally and globally, as time passes and as geographies are understood as places of contention with or outside of psychiatry. This situatedness is not just discursive, not just about speaking, but also material (Grech & Soldatic, 2016; Haraway, 1988; Haraway & Goodeve, 2013; Nazarea, 1999). Such a perspective means that what counts as ‘the mainstream’ or the ‘hegemonic’ also varies. The system you are up against; the possibilities of connections; the very nature of power is not uniform, which makes the journey more or less precarious, and it is precarious still. None of this means that mental distress is a ‘myth’, but the emphasis on collectivities and ecologies evokes a different lens, that of social suffering and structural violence (Farmer, 2009). Structural violence consists in structures such as poverty, racism and homophobia harming individuals and groups such that ‘illness’ is socially determined if embodied as it is lived. However, this body of work rarely refers to the psychic realm (but see Gone, 2016). This is something we will find repeatedly—work that is relevant to us but does not refer to us. Finding a voice is one thing; sustaining it and progressing it are something else. Attempts to silence or to recuperate continue as we shall see, but even when these attempts look to be succeeding, the voices of madness escape, will not be squashed contra Harrison and Mort (1998).

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One very common way that madness is positioned in the West is as not being credible witnesses to our own experiences, not able to give believable accounts of ourselves and being outside the hermeneutic fields, or fields of meaning, prevalent in society. That is, mad people are not credible knowers; at the level of knowledge itself they are disempowered, subject to epistemic injustice (Fricker, 2007). This is silencing on a grand scale. Another strategy is to systematically misunderstand what survivors are saying. What Habermas calls the ‘hermeneutic space’ (the meanings we live by) is, in the ‘psy’ sciences, one of individuation and ripping people from their social settings (Gaines et al., 1991). I will argue that at the extreme, survivors, the ‘mad’, have no hermeneutic space available, and this is a violent silencing. We need to generate a language to speak our distress, one that is publicly available, such as feminism and anti-­racism. The response to these discourses may be positive or negative, but their existence is primary.

Non-uniformity Distress and responses to it, mad people and reactions towards them, are then not homogenous. The phrase ‘mad people’ or ‘survivors’ as generalities hides the different ways in which people are distressed and how they are responded to on the basis of attributes such as racialisation, gender, income and sexuality. Nor is this a matter of being ‘additive’. Identities and positionalities intersect to produce new subjectivities and different knowledge and activisms (Crenshaw, 1991; Fernando & Keating, 2008; Hooks, 1982; Kalathil, 2008; Spivak, 1988). Nev Jones and Tim Kelly talk of ‘inconvenient complications’ as so many attributes and situations come to the fore in a multiplicity of subjectivities and positionalities on this terrain (N Jones & Kelly, 2015). The story I sketched at the beginning is a Western story, a white story, and it must be decentred (Le Grange, 2016; Williams, 2018). The metaphor of ‘finding a voice’ is widespread however, although metaphors of ‘sight’ are present too (de Sousa Santos, 2007). It is not possible to take all these ‘inconvenient complications’ into account at every juncture; choices must be made. But the criteria for making them are what matter; they do not need to be consistent; they do need to be transparent. This will be taken up in Chap. 9.

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‘What does madness articulate?’ turns out to be a complex question. But madness certainly articulates; the question is how to represent this. The above two paragraphs sketch in a basic way the theoretical tools that will be used in this book. The story of ‘Speaking Out’ was referenced solely by survivor texts and other survivor media. The above two paragraphs, sketching theoretical tools, have more non-survivor authors than survivor references. They are not absent and they could be added to. In particular, attention should be paid to discourses of rights, but it will be slight here. To do it justice is to engage with the UN Convention for Persons with Disabilities, and I do not feel equipped to do that (Minkowitz, 2006, Davar, 2008, Drew, Funk et al. 2011, Davar, 2017). The point I am trying to make here is that we are charting new territory and to do that need to draw on discourses and theories that were forged for the most part in other spaces and with different foci. The Global South is a gap, as I said. None of this means there is an absence of survivor writings and I have used as much as I can. But there is a difference between others speaking for us and speech and action by us. Madness is largely absent from these clusters of thought—of feminism, decolonial studies, Queer theory—and Chap. 2 discusses this. To ‘put it in the picture’ we can draw on existing tools but must change them too. To complete this Introduction, we need to look at the ‘mainstream’ in which this book is situated: what is it arguing against; what is it arguing for differently; who are the interlocutors? If madness has its ‘mainstreams’, so does this text. Hopefully, there are the beginnings of an answer. Simply put, the question is how are we represented and how is this enacted in this ‘mainstream’: academically, politically and culturally? Although it may appear that people are listening now, the legacy of that silencing persists and some will go to any lengths to keep this legacy going, sometimes at any cost, which is not to say that nothing has changed. It is to say the change has been a struggle and this will be charted throughout the book. For now, I will examine in detail two elements of this mainstream which are of particular relevance to those deemed mad: academia and political economy. But first some caveats.

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Who Speaks? For people familiar with this terrain, the survivor writers mentioned above are expected. For those who are not familiar, I mention now that these are people who have a ‘public profile’. At the other side are those consigned to oblivion, brutalised in backwards or today’s mini-­institutions (Spivakovsky et  al., 2020). They have immense barriers as knowledge-­ makers because of how they are ‘treated’—medicated, shocked with Electroconvulsive Therapy—a treatment that compromises their capacity to think. But more important than this, they inhabit a space that is so far removed from institutions credited as repositories of knowledge that it is almost its reverse. But what is the relation between those well-known (I include myself ) and people subjugated like this? Sometimes the claim is that we speak on their behalf, but there is a kind of arrogance there. Systemically, a change in mad knowledge might have widespread effects, but we are certainly not there yet. However, it is not as if there is a big zero in these places. Little communities form and people learn from each other things that matter day-­to-­ day: such as what really brings about bodily and mental negative experiences attributed to your ‘illness’? It is medication that is producing this ‘zombie’ state, these restless legs and this is learned from fellow inmates, not staff. Or how not to eat whilst seeming to, how not to swallow the tablets. Little acts of resistance. And kindnesses. Doing someone’s washing when they are not up to it. I spent 1999 in hospital. One woman washed my clothes and ironed my T-shirts. Ironed T-shirts? I don’t expect she ironed her own—it was symbolic of care and a common humanity which we supposedly lack. These little acts are not recorded much. You find out by being there. I have—but sporadically. Some people are there all the time. Time is a big factor in becoming that awful word—a ‘chronic’. Even mainstream psychiatry recognised decades ago that long-term institutionalisation produced some of the feelings and behaviours deemed pathological (Wing, 1962). For what this felt like and feels like, I recommend the website of the Survivors History Group although it stops about 2020 (www.studymore.org). I lay out the dilemma without a solution, but awareness of it is a start and I will return to it. But when we talk of ‘intersectionality’, this difference, or continuum, is the most internally troubling.

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The Underground Again, the people I referenced above are individuals although most were involved in organisations. More high-profile organisations sometimes had recognition, even from government, although it could go badly wrong as I will show. Other organisations or outlets operated more under the radar and still do. Phoenix Rising was a magazine published from Toronto in the 1980s–1990s but with international reach. Because it was produced by a radical collective (two people actually) working from one room, it contained material that broke all the rules of what counts as a ‘publication’ and as ‘writing’. It is worth quoting what it says about itself in retrospect: Over it’s decade of existence, the resolutely political publication focused a critical eye on a shifting spectrum of mad issues: homelessness, pharmacology, policy, sexuality, electroshock, prisons, poverty, medical experimentation, the place of children and the elderly in the mental health system. Phoenix Rising also celebrated the agency and talents of mad Canadians. Indeed, its very name symbolized the potential of psychiatric survivors coming together in support, acknowledgement, and action. The pages of Phoenix Rising are full of mad voices—in personal stories, book reviews, cartoons and, perhaps most powerfully, in published letters sent in from across the country and beyond. (https://madnesscanada.com/resources/voices/phoenix-­r ising-­1 980­1990/)

Although this book is an ‘academic’ one, it is important for my argument to show that knowledge about madness by mad people took and takes many forms. This is an example which I can’t replicate but wish to represent. But soon we shall see that it does not count as knowledge at all by those who set epistemic criteria: but this book is part of the destabilisation of these criteria. Organisations and outlets like Pheonix Rising exist today, and there is a reason why they are often invisible. I will explain these reasons when discussing the second of the ‘mainstreams’ below—political economy.

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The Field Sometimes this book will read as if its subject were fixed, that there is agreement on its contours and its content. We know what ‘user-led research’ is. We know what ‘activism’ is. This is the ‘pull of the rational’. Because there is a great deal of instability in what we are actually talking about—what counts, who counts and why they count vary almost from author to author. To some this means the ‘field’ is not in a state to be written about and this book is bound to fail. But that is to privilege a kind of consistency that, I shall attempt to argue, Mad Knowledge cannot and will not aspire to. At the least, it is plural, fluid, ambiguous and heterogenous. It is also passionate and not afraid of a commitment to social justice. It certainly can be problematic, but partly those problems are in the eyes of others, others who have a fixed idea of what knowledge is, which is not to say that it is an easy space to occupy. The unsettling is unsettling after all. And there are those with very strongly held positions and others with equally strongly held but opposite ones. This in itself is not unusual, but I do recognise that this is difficult territory and will tread carefully. I propose the development of Mad Knowledge and research because I believe we have been denied that possibility. I don’t propose Maddening Knowledge—that is familiar enough!

 he ‘Mainstreams’ of Survivor T Voices—Psychiatry This book is intended to be a challenge although a constructive one. What we are challenging, who is an acceptable or unacceptable interlocutor, what determines the conditions of existence of knowledge-making by persons or groups can be painted in many ways. As I have just said, ultimately, this is an academic text, but its conception of knowledge is elastic and it aims to unsettle ‘hierarchies of knowledge’ both inside and outside the academy. The mainstream or the hegemonic academy is not elastic; it has tight rules which will be important for Chaps. 3, 4 and 8. The academy is pretty consistent internally, but nonetheless I must be specific

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about which elements are relevant here. The first is the ‘psy’ sciences— psychiatry, psychology, psychiatric nursing and so on (N. S. Rose, 1985). Their focus on the individual and rational cognition is vital, for it both determines treatment and defines what is lacking in the ‘abnormal’, in psychopathology—completeness in personhood, rational thought and coherent speech. However, the ‘business’ of psy academics is empirical research. And so this must be addressed—both what it does and what it does not do. Despite its claims to neutrality and reliance on the ‘null hypothesis’, even this has an underlying epistemology, perhaps especially this. The humanities, anthropology, sociology and (English) literature maintain the thread of madness as a rupture in the person and questionable credibility in thinking. I am no polymath, but there are important elements here too. And some of these disciplines have been the source of critiques of dominant ways of thinking about madness, but they often set us to one side or write that we will be taken care of by the state, just in passing (Fraser, 2013). There is also, sometimes stemming from these disciplines, the body of work associated with ‘critical theories’1 in terms of marginalised groups: feminism (S Harding, 2004; Sandra Harding, 2008); Black feminism (Collins, 1990; Gines, 2011); post-colonialism (Hall & Du Gay, 1996; Spivak, 1988); LGBT+ analysis (Butler, 2011; Nadal et  al., 2016) and intersectionality (Crenshaw, 1991; McCall, 2005). All these texts are academic, even though they are critical texts. And often people straddle more than one identity—indeed the ‘mad scholar’ is an intersectional identity and may be layered with others such as racialised groups of people who are LGBTQ+. But the ‘mad scholar’ is also an oxymoron, given that scholarship is associated with reason which we supposedly lack.

 The term Critical Theory is associated with the work of the Frankfurt School (Horkheimer, Adorno, Habermas) (Geuss, 1981). This work looked at the cultural and symbolic structures of society as a whole and how it reproduced certain structures, especially those of inequality, focussing on those with power. I shall, in fact, refer to Habermas’ work. But I do not wish to cause confusion by using the same term to discuss the bodies of work associated with marginalised groups, even though this is done. I shall therefore refer to ‘critical theories’ for these domains. Please see Rose (2021) for a discussion of the relation between the Frankfurt School and the present arguments. 1

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The Academy and ‘Psy’ Research ‘Psy’ research of the empirical sort tends to rely on the methods of medicine. Today there is a commitment that medicine should be evidence-­ based, and in the early 1990s, the phenomenon of Evidence-based Medicine (EbM) was born in Canada (Sackett et al., 1996). It quickly migrated both internationally and in specialisms and is now the foundation of research in Psychiatry, Psychology, Social Work and Psychiatric Nursing. Associated with this is the idea that there is a hierarchy or pyramid of ‘evidence’. Figure 1.1 illustrates this hierarchy. It is not necessary to explicate each level—although the authors assume everyone knows what the initials ‘RCT’ stand for. Assumptions are everywhere (including here!) we shall see, but in this case the initials stand for Randomised Controlled Trial. This is the ‘gold standard’ in ‘psy’ research because it is proclaimed as the most free from bias, the most ‘neutral’, ‘objective’ and, above all, ‘generalisable’. It is only trumped by a

Metaanalysis RCT

Eperimental Design Quasi-experimental Design Case Control Study Cohort Study Observational Study Expert Opinion Fig. 1.1  The hierarchy of evidence [adapted from The hierarchy of evidence (Ho et al., 2008)]

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‘meta-analysis’ which takes all RCTs on a particular subject and synthesises the results for a more ‘accurate’ estimate of a difference, an average, an incidence and so on. All these claims have been critiqued, including by service user researchers (Faulkner, 2015). I shall return to them in discussing user-led research as they embody power at a specific level. Another look at the pyramid reveals something else. It is called a ‘hierarchy of evidence’. This is misleading because it is actually a ‘hierarchy of methods for producing evidence’. The full significance of this will become evident when we look at Public Engagement in Research (Chaps. 3 and 4). But the elision when unpacked shows that everything hangs on method—method is the Royal Road to Truth. The content, the emotions, the ethical issues, relational processes as well as the effort expended by the participants (subjects) are thought to be either irrelevant or resolved again by the method because this method is applicable to a huge range of human problems, it appears. We see again that certain methods are missing. ‘Qualitative research’ generally or ‘participatory research’ is absent, so even the possibility of centring the voices of particular groups, in particular marginalised groups, including people designated mad, is not part of the topography at all because it will not produce reliable ‘evidence’ (Blackwood et al., 2010). There is a huge literature on the problems with RCTs (and the lower levels of ‘evidence’) and on what qualitative research might ‘add’. Indeed, Blackwood et  al. are surfacing problems with an early version of what became a very prominent model for ‘complex interventions’ which includes a modicum of qualitative research (Craig & Petticrew, 2013). I am not going to rehearse these debates, although will return to some of the assumptions. The point here is that the veneration of the RCT, and indeed of epidemiology (’cohort studies’), is privileging certain methods in a very restrictive manner. Because it treats all ‘populations’ and all ‘interventions’ by exactly the same method, it rules out the specificity of certain groups being attended to, their difference from each other, that some are marginalised, that some are mad. They cannot speak for themselves in this methodology, we are ‘spoken for’. At most, particular groups might be ‘variables’ in a model of some sort. (Some groups of people regularly really are excluded from these studies, particularly people with co-morbidities or street drug use. Indeed, it has been demonstrated that

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people with psychiatric disabilities are routinely excluded from much research in physical medicine altogether (Humphreys et al., 2015).) But those who are included are passive, without agency and generally without the chance to represent themselves at all. Except according to the agenda set by the researchers. As soon as research attention is paid to the detail of the lives of those living under the description of a diagnosis, these methods are no longer applicable, must change. If we want to know how poverty affects mental health, official statistics and RCTs will not help because the lives of those who inhabit poor and hostile environments are not reducible to a set of ‘variables’ with one ‘primary outcome’, as mandated for RCTs. A ‘primary outcome’ means that one thing only must be measured at the end. For example, many RCTs use ‘bed occupancy’ as the outcome of an intervention to prevent hospitalisation. This collapses people who have multiple short stays with those who spend a long time on wards and surely their experience is different. This is hidden by statistics. But to step outside the hierarchy is to be ‘unscientific’. The RCT also relies on the centrality of the ‘individual’ as both concept and body, the individual stripped of all social context. This individual has also been positioned clinically, and this means that what are deemed, for example, appropriate therapies are both researched and implemented at the level of the individual. This has been called the ‘clinicisation’ of those with mental distress in research contexts, they are reduced to their diagnosis and their lacks (Nev Jones & Brown, 2012). So a stripped down version of ourselves is evident in ‘psy’ research. The final issue I would like to address is that of ‘generalisability’ and the all-too-frequent finding that clinicians, damn them, do not practice EBM. This is referred to as the ‘efficacy/effectiveness’ dilemma (Falloon, 2003). Simply put, what works in the laboratory (efficacy) does not work in the wild (is not effective). In turn, this has led to the recent development of ‘Implementation Science’ to address and resolve this dilemma (or to give it a new name some would say) (Wensing & Grol, 2019). In fact, this simplifies things by taking the assumption of generalisability to extremes. I will deal with this in detail in Chap. 4, but, in brief, it is argued that solid evidence of an ‘intervention’ (a pill, a community health team) being efficacious means that it can be effective in all contexts, usually with some adaptations but without disturbing the core. It can be

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effective and Implementation Science will show us how to do it (Damschroder et al., 2009). At the last count, there were 70+ models for this. And of course some are sophisticated and nuanced; not all focus on individual behaviour, some address organisational change (Young et al., 2002). But the central tenets are hard to shift especially when the discourse changes to ‘scaling up’, to the idea that evidence-based interventions can be applied worldwide (Betancourt & Chambers, 2016). This we will meet again in Chap. 4. But at an ethical level, it demonstrates a kind of arrogance, an assumption that this work is universal and neutral, what Donna Haraway calls the ‘God Trick’ (Haraway, 1988). It can become entirely disconnected from the reality of people’s lives; it is not concerned with the ‘patient’ but with changing the behaviours of clinicians. People with a diagnosis do not live their lives along with their struggles according to what happened in the doctor’s office. These lives and struggles should be central in research as well as activism but are effectively erased by these prized methods. And of course, workers, schools and employers even if aware of the ‘evidence’ will turn it to their own ends, will make it work for them if it can and if it can’t they will discard it. The ‘context’ then is rich and complex, and marginalised groups do not stand a chance with this kind of science that cannot take account of them. I will, later, address what research can achieve, when it is done not only with survivors but by them too. And there is a second hierarchy of knowledge which is more like a division—the university and the rest. This situatedness in terms of hierarchies and settings will receive much attention in this text.

Speaking Back to Austerity This section addresses a particular kind of political, economic and social arrangement that is prevalent in the industrialised West although instantiated according to particular national governance. This arrangement I will call ‘austerity’; some governments use this word themselves (the UK), others avoid it (Australia). But those on the receiving end of these policies know what they feel like. Let me be clear first that I am writing about pre-COVID-19. As I am writing in the middle of the pandemic, it is

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difficult to make an analysis of it. For instance, at this moment (November 2020/revised 2021) the full economic consequences are as yet unknown, although we do know they will be bad. The impact on welfare is completely unknown; there is a particular concern with education. In terms of marginalisation, it is clear already that the pandemic has laid bare and heightened health inequalities, particularly in relation to Black and Brown people, which have apparent roots in social inequities. Commentators remark that COVID has ‘shone the spotlight’ on health inequities brought about by social configurations that have political and cultural roots. Austerity has impacted marginalised groups partly through the creation of a ‘hostile environment’ and also materially (Bowling & Westenra, 2020). Stereotypes are heightened into hate and hate crime, including for people with mental distress (Carr et al., 2019). Interestingly, this last is a user-led study and there was little previous work. This indicates lack of awareness or avoidance of the subject by researchers which avoidance may be replicated in society more widely. The social injustices perpetrated on marginalised groups, particularly those designated mad and with other intersecting positions, will be explored at length in this book in Chap. 9 entitled ‘Intersectionality’. Austerity has had a major effect on the economy—on work and welfare. The world of work has changed to become ever more precarious with zero-hours contracts and the ‘gig’ economy. The Labour Aristocracy is much reduced in both size and influence. Populism is on the march and not only in the Global North, as is clear in Brazil and India. When we talk about the world of work in relation to madness, though, there is a specific issue. That is, that rates of unemployment amongst people with a mental illness diagnosis are much higher than for any other physical illness or disability, and these have the highest rates in aggregate of any other demographic group. Rates in the USA, the UK, Denmark and Australia range from 65% to 80% and for people diagnosed with psychosis can be as high as 90% and these figures are heightened in those from racialised communities (Lo & Cheng, 2014). Above all, austerity has worsened the employment status of those with mental health problems (Barr et al., 2015).

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There are many ‘intervention’ studies to try to raise the employment chances of people with distress, including severe distress. They are too many to mention and, by and large, they fail in their objective. I once asked someone doing such research what counted as ‘success’ in the work programme they were testing. “One day at the workplace” she responded. I was stunned. Staying in one place for eight hours means you are ‘employed’. Of course, not all research is like this, but it encapsulates what I mean by people’s lives being misrepresented. If such a large proportion of people with a mental health diagnosis are unemployed, what are they doing, how are they living, how are they navigating the landscape of austerity? I will focus on the UK although Australia introduced the National Disability Income Scheme in 2014 and similar arguments could be made of that. The situation in the USA is the worst of all and follows all other deprivation gradients, which is unsurprising. Unemployment means low income, poverty often, and so we start with the system of ‘welfare’ benefits. It must be made clear though that welfare benefits are not confined to unemployed persons: a high proportion of people who receive benefits are also working. There is, however, a taper, and if your income goes up, then benefits go down. It has been calculated that thus amounts to a marginal tax rate of 75% as compared to 47% for highly paid Britons. I should also mention Eastern Europe where deinstitutionalisation has just begun and the social hurdles are ubiquitous. The current situation in the UK has a long history, but suffice to say that from the 1970s to the 2000s, people who could not work long term due to illness or disability were supported by ‘invalidity benefit’. I myself received this benefit for ten years—it was not pleasant but it was not the horror it has become. For a range of political and economic reasons, this benefit became controversial, and in 2005  in the UK (the year the Conservative/Liberal coalition government was elected and David Cameron became Prime Minister) an assessment procedure was introduced for physically or mentally disabled people. This was called the ‘Work Capability Assessment (WCA)’ and graded people according to their ‘fitness to work’. Importantly, the assessment was highly skewed towards physical disabilities and was carried out by a private company who engaged ‘assessors’ with no health background at all. It took place in

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an ideological climate of heightened individualism where people were meant to take responsibility for themselves and to work in ‘open employment’. Getting out of poverty was an individual responsibility (Allan & Scruggs, 2004; Beatty & Fothergill, 2013). It is slightly ironic that up until this point, a general assumption was that people with severe distress could not work. Now, all of a sudden they are competing in the open labour market—usually with disagreeable cvs and long periods of unemployment. The WCA placed people in one of three groups according to their ‘work readiness’. The ‘lowest’ group, but ironically the one many survivors desired because it was potentially the most beneficial, was called Employment Support Allowance (ESA). However, repeated WCAs were necessary to retain this status with the result that many people lived in fear that they would lose this benefit or be forced to engage in work-­ related activities. Of course, they were represented in the Red Top media as ‘scroungers’ not ‘strivers’, as lazy and lying and as prone to fraud. Brown calls this ‘re-moralising vulnerability’ (Brown, 2012). The economic, the ideological climate and the effects on persons and groups are intricately entwined, but the predominant response was fear, intensified when, for instance, gyms were asked for lists of their disabled clients. The WCA ‘decision’ comes in a brown envelope: that is, the decision on which of the three groups one is placed. People live in dread of this (Garthwaite, 2014). The decision of the ‘assessors’ is influenced by documentation and letters—from GPs, from allied health professionals and in our case, above all, by psychiatrists. This puts some survivors in a difficult position, particularly those who have ‘avoided’ formal services and Black and Brown people make up a good proportion of these. The Department of Work and Pensions (DWP) requires people to have a diagnosis and one that is medically certified. If you have avoided psychiatry, even more if you have campaigned against the very idea of diagnosis, you now will get no money unless you comply with these requirements. Some survivors have thus come to see the main part of the ‘mainstream’ that they have to navigate as the Department of Work and Pensions (DWP), not the apparatus of Psychiatry. There is mobilisation and activism, including online, and I have described it elsewhere. Much is underground for obvious reasons (D. Rose, 2018).

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And this is where I will introduce another form of speaking back, indeed acting at a group level. For example, the private Facebook Group, Recovery in the Bin (RiTB) is not just a Facebook Group. They train people in form-filling and what to expect in an interview and engage in a whole panoply of activities to help people navigate this system. The irony is that I cannot go into details because what I know comes from people fearful that they will be found ‘fit for work’ if they show signs of ‘competence’. But RiTB has entered the realm of knowledge-making in a more conventional sense with a website that contains articles articulating new concepts such as ‘Neorecovery’ to encapsulate the idea that the drive that we should all ‘recover’ is tied to neoliberalism. Similarly, Foucault’s idea of the Panopticon was used by the late Nila KK Gupta to describe the surveillance society that the ‘non-recovered’ are subject to. These are publicly available articles: www.recoveryinthebin.org.uk. They would no doubt be described as ‘extreme’, but they are grounded in experience, a repository of experience that the DWP, the government itself, does everything to hide. It includes deaths. John Pringle runs the Disability News Service (on a shoestring), and it is an outlet for much of their campaigning successes, many of which are anonymous. Anonymous because of the fear that publicly demonstrated abilities will lead to being found ‘fit for work’. But the kinds of ‘accommodations’ (measures to make it possible to work) such people would require to do even a part-time job are unthinkable for most employers and for government. They would include working when you can and that might be between midnight and 2 am one day and 11 am and 3 pm the next and not at all for the next two and then 9 am to 9 pm the fifth. That makes a part-time job of 21 hours a week. It shouldn’t be impossible, it’s not ‘normal’ (a term we will meet again), but there are more ways to contribute to society than through the monetised market. I have written about RiTB at some length partly because I have personal knowledge but they are not alone and not alone in being at least partially hidden for reasons of fear. Silenced by the prospect of destitution. Activity revolves around different things but survival is primary. Another example is the Kindred Minds Manifesto. Kindred Minds was a small collective of Black survivors, and the Manifesto is a compendium of the effects of colonialism on Black and Brown people today. It is not

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publicly available because the money was found right to the point of copy editing but not for publication itself. I do not know how many others there are because this is all ‘insider knowledge’. It is part of my task to at least represent it. Of course, there are other groups and organisations, online and not, some of which are much more aligned with the mainstream and which suit some people better. But they are not making new knowledge in the same way and their conditions of existence tend not to be so dire. I think these two things are linked. The reader may be asking whether I am arguing that it is better not to recover? No, the argument is that under current conditions it is not possible to ‘recover’ and the main effect of the ‘recovery approach’ is to make people feel guilty that they cannot measure up. We shall meet this argument again in the next chapter. To continue with the story of welfare benefits in twenty-first-century Britain. In 2014 the amount of money ESA claimants were entitled to was reduced to the same sum as those in receipt of Jobseekers Allowance— largely for short-term unemployment. People with little prospect of work were expected to subsist long term on £73 ($88) per week. About the same time a regime of ‘welfare conditionality’ was introduced. This meant that any violation of the regulations—including missing appointments— could result in ‘sanctions’, for example, benefits being stopped for several weeks. A further part of this tightening up was to place psychologists in Job Centres to help people become ‘work-ready’, using the mechanism of Cognitive Behavioural Therapy (CBT). So did work become a health outcome and unemployment a psychological condition. And this too was subject to conditionality. Missing appointments for CBT meant losing money, sometimes a significant amount. It has always been said that psychological treatment could not be forcibly administered, like medication (Katsakou et al., 2010). However, if the alternative is destitution, there is certainly coercion at play. Friedli and Stearn coined the term ‘psychocompulsion’ to describe and analyse this phenomenon (Friedli & Stearn, 2015). The system of welfare benefits for those with long-term mental distress is actually more complicated than this. But the first point is that it overturns the assumption that has held for centuries that the mad are unable to labour or can only work in ‘sheltered workshops’. At a stroke, one is

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obliged to seek employment in the open labour market. People with a 10- or 20-year gap in their cv are not attractive to employers. But secondly, it is both time-consuming and psychologically exhausting to deal with this system. People must emphasise their deficits, their lacks, what they cannot do in order to claim income. This is not a question of lying because everything from gaps in cvs to the side-effects of medication making it hard to keep awake means full-time or part-time work is not feasible. This is the environment in which small activist groups work. Secondly, though, income itself obviously determines other facets of life: to have stable housing, to have enough food, to engage in leisure activities. Foodbank use—food donated to charitable organisations for those in poverty—has risen dramatically in the UK over the last five years. The combination of poverty and fear of the DWP means people do not go out much, especially those living alone. In short, life is reduced to its essentials by this system and some people die. As I have said, reasonable accommodations in the workplace, at least to start with, would have to be quite dramatic if the persons I am describing were to work. But this does not mean they are making no contribution: such a sentiment is part of our present and not a given. Finally, although the evidence is correlational, it shows that these changes are associated with serious consequences for some people’s lives. In 2017, NHS digital released the results of the 2014 Adult Psychiatric Morbidity Survey for England (https://digital.nhs.uk/catalogue/ PUB21748). The figure that caught the headlines was that almost 25% of 16- to 24-year-old women reported self-harm, mainly self-cutting, in the previous year. Suicidal thoughts and attempted suicide had also increased. But another set of figures stayed under the radar of press and public reaction. The report said that: Benefit status identified people at particularly high risk: two-thirds of Employment and Support Allowance (ESA) recipients had suicidal thoughts (66.4%) and approaching half (43.2%) had made a suicide attempt at some point. (Chapter 12, p. 3)

This figure had doubled since 2007. The calculation was consistent with a quantitative study of local authorities which also showed widening inequalities in the rate of suicide attempts with regard to indices of

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deprivation, including income, health status and ethnicity (Barr et  al., 2015). This was not deemed newsworthy, and, as well as the figures themselves and what they represent, this very fact is relevant to the argument. Hidden from history? Hidden now. Finally, the above may have changed in terms of its detail by the time this is published. I anticipate, though, that the specific arguments about the nature of these aspects of the contemporary ‘mainstream’ are likely to persist. We are not going to return to a system that values voluntary work or peer support, we will see that funding for the latter, especially amongst racialised groups, is diminishing not increasing (Shaping our Lives & NSUN, 2019). The practicalities and logistics of the system are due for change, are changing now, to a system that is meant to simplify the complex network of welfare benefits, called Universal Credit. Flaws and pitfalls have already been anticipated (Brewer et al., 2012). But this was long before COVID-19 led, even in the early stages, to a huge increase in applications for this new welfare benefit. The effects on disabled people have received little attention which by now should come as no surprise. There has emerged a new narrative on ‘mental health’, however, which I shall address in the final chapter.

Conclusion This chapter started with what looked like an impossible question: what does madness articulate? Impossible because the mad are deemed completely inarticulate. A change of lens showed that this situation had been created, that mad people had been silenced at least since the Enlightenment, in the Global North. I sketched some ways in which this silence was and has been broken, in the activism that began in the USA, the UK, New Zealand (Porter, 1988) and other countries in the 1970s and 1980s, although I stress that there has always been (hidden) oppositions. The evidence is rarely formal, but it can be unearthed, sometimes in unexpected places. You will notice I say ‘evidence’. It is one idea I will take on because it supposedly belongs to science alone. This chapter has also provided the beginning of theoretical tools which can accommodate a range of differences—from within the group that

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this book is about and the importance of intersecting identities and from the complex nature of the spaces in which speaking out happens and which shape it, its content and its form. These are material and symbolic in nature. Critical theorising is central to the endeavour of the entire book, but it cannot be used naively and in a straightforward manner as little of this work has addressed madness, although it has addressed other positionalities which can intersect with madness. I have also centred the way in which psy individuates its clientele and strips them of their social settings, including in research. I will link this argument to that of marginalisation next. To illustrate these ideas, two settings were chosen—clinical academic empirical research and contemporary political economy. These constitute a significant part of the ‘mainstream’ or ‘hegemonic’ which survivors have to contend with, and some wish to challenge and change. Empirical research in the ‘psy’ disciplines (Rose, 1985, op. cit.) determines, or seeks to determine, the nature of madness and what might ‘ameliorate’ this disease and under what conditions. I argued that the focus on empirical method made it impossible for mad people’s lives, in their complexity and as a marginalised group, to be represented at all. Any research which might seek to do this, especially user-led research, violates these methodological principles and so risks the epithet of being ‘unscientific’. Thus, clinical academic research in this domain can be a mechanism for squashing the speech of the mad. But user-led and cognate research will not go away, will always try to escape these strictures, will bubble up and evolve. User-led research has its importance here but not just as opposition, as critique: as the development of new ways of being represented in the academy which demands the inclusion of theory. I deal with it in detail in the middle part of the book. Equally, the political, economic and social regime of ‘austerity’ forces individuals to represent themselves as a series of deficits, and as psychiatric patients, all backed up with ‘expert evidence’ in the form of documentation and letters. It is exhausting, confusing and leaves little energy for speaking back. It leads to poverty and to scrutiny to make sure that you really are entitled to any income at all. It seems to lead to suicidal thoughts and attempts by people in the lowest income groups, but one has to dig

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deep to find this evidence as it is not covered by the media, it is not newsworthy except when positioned as ‘fraud’. This aspect of the contemporary ‘mainstream’ really would seem a totalising one. And yet, there are organisations which both help people understand and navigate this complex system and produce campaign materials, write letters about injustice, bring high court cases and protest on the streets. Again, madness will not be totally silenced. But such groups must be careful because too much such activity might lead to people being found ‘fit for work’. This is highly ironic for reasons given. The mainstreams in which madness sits is specific in time and place, and distress and responses to it are not homogenous within this group. And this group does not constitute the limit of narratives about mental health which are growing all the time. But strategies to contest particular configurations of the mainstream and to develop new meanings and new knowledge, a knowledge specific to this non-rational, inarticulate group, are shaped too by different aspects of these mainstreams. The attempt to silence continues in different ways. Sometimes it is an attempt to recuperate emerging discourses and practices into mainstream knowledges under material conditions that assist this recuperation. Sometimes it is the inability to hear how people live, often in adversity. Instead, what is heard is symptoms and pathology and the consequent diagnosis, treatment and social exclusion. But we have come too far now, there is a legacy, we will continue to speak and develop knowledge and new forms of support. The rest of this book develops these ideas in multiple ways. I hope to formulate a pathway for ‘Mad Knowledges’, including but not limited to user engagement in and led research, but there are formidable obstacles which I shall explain.

References Allan, J. P., & Scruggs, L. (2004). Political partisanship and welfare state reform in advanced industrial societies. American Journal of Political Science, 48(3), 496–512. Allen, J.  A. (2009). The Feminism of Charlotte Perkins Gilman: Sexualities, Histories, Progressivism. University of Chicago Press.

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Barr, B., Kinderman, P., & Whitehead, M. (2015). Trends in mental health inequalities in England during a period of recession, austerity and welfare reform 2004 to 2013. Social Science & Medicine, 147, 324–331. Beatty, C., & Fothergill, S. (2013). Hitting the poorest places hardest: The local and regional impact of welfare reform. Sheffield. Betancourt, T. S., & Chambers, D. A. (2016). Optimizing an era of global mental health implementation science. JAMA Psychiatry, 73(2), 99–100. Blackwood, B., O’Halloran, P., & Porter, S. (2010). On the problems of mixing RCTs with qualitative research: the case of the MRC framework for the evaluation of complex healthcare interventions. Journal of Research in Nursing, 15(6), 511–521. Bowling, B., & Westenra, S. (2020). ‘A really hostile environment’: Adiaphorization, global policing and the crimmigration control system. Theoretical Criminology, 24(2), 163–183. Brewer, M., Browne, J., & Jin, W. (2012). Universal Credit: A preliminary analysis of its impact on incomes and work incentives. Fiscal Studies, 33(1), 39–71. Brown, K. (2012). Re-moralising ‘vulnerability’. People, Place & Policy Online, 6(1), 1. Butler, J. (2011). Gender trouble: Feminism and the subversion of identity. Routledge. Carr, S., Hafford-Letchfield, T., Faulkner, A., Megele, C., Gould, D., Khisa, C., … Holley, J. (2019). “Keeping Control”: A user-led exploratory study of mental health service user experiences of targeted violence and abuse in the context of adult safeguarding in England. Health & Social Care in the Community, 27(5), e781–e792. Collins, P. H. (1990). Black feminist thought: Knowledge, consciousness, and the politics of empowerment. Routledge. Craig, P., & Petticrew, M. (2013). Developing and evaluating complex interventions: Reflections on the 2008 MRC guidance. International Journal of Nursing Studies, 50(5), 585–587. Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 1, 1241–1299. Crossley, N. (2006). Contesting psychiatry: Social movements in mental health. Psychology Press. Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Alexander, J. A., & Lowery, J. C. (2009). Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science, 4(1), 1–15.

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Falloon, I. R. (2003). Family interventions for mental disorders: Efficacy and effectiveness. World Psychiatry, 2(1), 20. Farmer, P. (2009). On suffering and structural violence: A view from below. Race/Ethnicity: Multidisciplinary Global Contexts, 3(1), 11–28. Faulkner, A. (2015). Randomised controlled trials: The straitjacket of mental health research. McPin Talking Point Papers. Available online: http://mcpin. org/resources/talking-­point-­papers/ (accessed on 4 September 2018). Fisher, D., & Spiro, L. (2010). Finding and using our voice: How consumer/ survivor advocacy is transforming mental health care. In Mental health self-­ help (pp. 213–233). Springer. Foucault, M. (1967). Madness and Civilisation: A History of Insanity in the Age of Reason. Penguin. Fraser, N. (2013). Fortunes of feminism: From state-managed capitalism to neoliberal crisis. Verso Books. Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press. Friedli, L., & Stearn, R. (2015). Positive affect as coercive strategy: Conditionality, activation and the role of psychology in UK government workfare programmes. Medical Humanities, 41(1), 40–47. Gaines, J., Jones, D. L., Honneth, A., & Joas, H. (1991). Communicative action: Essays on Jürgen Habermas’s The theory of communicative action. MIT Press. Garthwaite, K. (2014). Fear of the brown envelope: Exploring welfare reform with long-term sickness benefits recipients. Social Policy & Administration, 48(7), 782–798. Geuss, R. (1981). The idea of a critical theory: Habermas and the Frankfurt School. Cambridge University Press. Gines, K. T. (2011). Black feminism and intersectional analyses: A defense of intersectionality. Philosophy Today, 55(Supplement), 275–284. Gone, J. P. (2016). Alternative knowledges and the future of community psychology: Provocations from an American Indian healing tradition. American Journal of Community Psychology, 58(3-4), 314–321. Hall, S., & Du Gay, P. (1996). Questions of cultural identity (Vol. 126). Sage London. Haraway, D. (1988). Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies, 14(3), 575–599. Harding, S. (2004). Introduction: Standpoint Theory as a Site of Political, Philosophic, and Scientific Debate. In S.  Harding (Ed.), The Feminist

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Standpoint Theory Reader: Intellectual and Political Controversies (pp. 1–16). Routledge. Harding, S. (2008). Sciences from below: Feminisms, postcolonialities, and modernities. Duke University Press. Harrison, S., & Mort, M. (1998). Which champions, which people? Public and user involvement in health care as a technology of legitimation. Social Policy & Administration, 32(1), 60–70. Ho, P. M., Peterson, P. N., & Masoudi, F. A. (2008). Evaluating the evidence: Is there a rigid hierarchy? Circulation, 118(16), 1675–1684. Hornstein, G. A. (2017). Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness. Revised and Updated with a New Epilogue by the Author. Routledge. Humphreys, K., Blodgett, J.  C., & Roberts, L.  W. (2015). The exclusion of people with psychiatric disorders from medical research. Journal of Psychiatric Research, 70, 28–32. Jones, N., & Brown, R. (2012). The absence of psychiatric C/S/X perspectives in academic discourse: Consequences and implications. Disability Studies Quarterly, 33(1), 1. Jones, N., & Kelly, T. (Eds.). (2015). Inconvenient complications: On the heterogeneities of madness and their relationship to disability. Policy Press. Le Grange, L. (2016). Decolonising the university curriculum: Leading article. South African Journal of Higher Education, 30(2), 1–12. Lives, S. O., & NSUN. (2019). The Future of User-Led Organsiations. Retrieved from London. Lo, C. C., & Cheng, T. C. (2014). Race, unemployment rate, and chronic mental illness: A 15-year trend analysis. Social Psychiatry and Psychiatric Epidemiology, 49(7), 1119–1128. McCall, L. (2005). The complexity of intersectionality. Signs, 30(3), 1771–1800. Nadal, K. L., Whitman, C. N., Davis, L. S., Erazo, T., & Davidoff, K. C. (2016). Microaggressions toward lesbian, gay, bisexual, transgender, queer, and ­genderqueer people: A review of the literature. The Journal of Sex Research, 53(4-5), 488–508. O’Hagan, M. (1993). Stopovers on my way home from Mars. Survivors Speak Out. Porter, R. (1988). A social history of madness: The world through the eyes of the insane. Porter, R. (1990). Foucault’s great confinement. History of the Human Sciences, 3(1), 47–54. Rose, N. S. (1985). The psychological complex: Psychology, politics and society in England, 1869-1939. Routledge Kegan & Paul.

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Rose, D. (2018). A hidden activism and its changing contemporary forms: Mental health service users/survivors mobilising. Journal of Social and Political Psychology, 6(2), 728–744. Sackett, D. L., Rosenberg, W. M., Gray, J. M., Haynes, R. B., & Richardson, W.  S. (1996). Evidence based medicine: What it is and what it isn’t. British Medical Journal Publishing Group. Schene, A., & Faber, A. (2001). Mental health care reform in the Netherlands. Acta Psychiatrica Scandinavica, 104, 74–81. de Sousa Santos, B. (2007). Another knowledge is possible: Beyond northern epistemologies. Spivak, G. C. (1988). Can the subaltern speak? Chambs: Springer. Spivakovsky, C., Steele, L., & Weller, P. (2020). The Legacies of Institutionalisation: Disability, Law and Policy in the ‘Deinstitutionalised’Community. Bloomsbury Publishing. Staddon, P. (2015). Mental Health Service Users in Research: Critical Sociological Perspectives. Policy Press. Still, A., & Velody, I. (1992). Introduction. In A.  Still & I.  Velody (Eds.), Rewriting the History of Madness: Studies in Foucault’s Histoire de la Folie (pp. 1–16). Routledge. The Survivors History Group. (2012). The survivors history group takes a critical look at historians. In P.  M. Barnes & M.  Cotterell (Eds.), Critical Perspectives on User Involvement. Policy Press. Vinthagen, S., & Johansson, A. (2013). Everyday Resistance; Exploration of a Concept and its Theories. Resistance Studies Magazine, 1(September), 1–46. Wallcraft, J., Read, J., & Sweeney, A. (2003). On Our Own Terms. Sainsbury Centre for Mental Health. Wensing, M., & Grol, R. (2019). Knowledge translation in health: How implementation science could contribute more. BMC Medicine, 17(1), 88. Williams, C.  A. (2018). Decolonising knowledge: Reflections on Colonial Anthropology and a Humanities Seminar at the University of the Free State. J Strategic Review for Southern Africa, 40(1), 82–103. Wing, J. K. (1962). Institutionalism in mental hospitals. British Journal of Social and Clinical Psychology, 1(1), 38–51. Young, K., Ashby, D., Boaz, A., & Grayson, L. (2002). Social science and the evidence-based policy movement. Social Policy and Society, 1(3), 215.

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Unclassified References Barnes, M., & Gell, C. (2011). The Nottingham Advocacy Group: A short history. In M.  Barnes & P.  Cotterell (Eds.), Critical Perspectives on User Involvement (pp. 19–31). Bristol, Policy. Beresford, P., & Wallcraft, J. (1997). Psychiatric system survivors and emancipatory research: Issues, overlaps and differences. In C.  Barnes & G.  Mercer (Eds.), Doing Disability Research (pp. 67–87). The Disability Press / University of Leeds. Campbell, P. (1985). “From little acorns. The mental health service user movement.” Sainsbury Centre for Mental Health (ed.) Beyond the Water Towers. The Unfinished Revolution in Mental Health Services 2005. Campbell, P. (1996). The history of the user movement in the United Kingdom. Mental health matters: A reader (pp. 218–225). Springer. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. McGraw-Hill. Chamberlin, J. (1990). The ex-patients’ movement: Where we’ve been and where we’re going. Journal of Mind and Behavior, 11(3), 323–336. Davar, B. V. (2008). From mental illness to disability: Choices for women users/ survivors of psychiatry in self and identity constructions. Indian Journal of Gender Studies, 15(2), 261–290. Davar, B. V. (2017). “Globalizing psychiatry and the case of ‘vanishing’alternatives in a neocolonial state.” Fernando, S., & Keating, F. (2008). Mental health in a multi-ethnic society: A multidisciplinary handbook. Routledge. Grech, S., & Soldatic, K. (2016). Disability in the global south. Springer. Haraway, D., & Goodeve, T. (2013). How like a leaf: An interview with Donna Haraway. Routledge. Hooks, B. (1982). “Ain’t I a Woman Black Women and Feminism.” Kalathil, J. (2008). Dancing to our own tunes: Reassessing black and minority ethnic mental health service user involvement (p. 5). National Survivor User Network in collaboration with Catch-a-Fiya. Katsakou, C., et  al. (2010). Coercion and treatment satisfaction among involuntary patients. Psychiatric Services, 61(3), 286–292. Minkowitz, T. (2006). The United Nations Convention on the Rights of Persons with Disabilities and the right to be free from nonconsensual psychiatric interventions. Syracuse J. Int’l L. & Com, 34, 405. Nazarea, V. D. (1999). Ethnoecology: Situated knowledge/located lives. University of Arizona Press.

2 Mental Challenges as Constitutive of Marginalisation?

Background I begin this chapter with an honest declaimer. I wrote this piece and Chap. 9 as one entire document when, as someone put it, I “was away with the fairies”. My particular brand are ‘enferies’ (l’enfer means ‘hell’ in French). Someone else read it and said it was “nonsense, all over the place, unreadable”. I did not throw it away but changed it, ‘logicified’ it, made it as appropriate as I could for a book like this. There is a certain irony here. I erased my own madness, its expression, to make what I was saying intelligible. I am the author of my own erasure. What was that about silencing? Whether there are traces of the first copy I do not know. Whether it is intelligible is for the reader to judge. And whether it bears at all on Mad Knowledge, I leave until later because one person’s experience cannot constitute knowledge as I conceive it. So, to proceed. If severely distressed people are going to be seen as a ‘marginalised group’, they first of all must be seen as a group. I am going to argue that psy science and practice specifically militate against this in that the whole endeavour is to individuate at the same time as it pathologises. So first, we can try to pin down what is meant by a ‘group’. Other words are ‘community’ and ‘collective’. To what degree do these apply? © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_2

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Of course, I have touched on this in the first chapter, so the reader will need to bear with a little repetition. To begin with and in a very descriptive sense we can pose the question as to whether distressed individuals constitute a ‘community’? The answer to this question must be ‘no’ in any conventional sense. The vast literature on ‘stigma’ shows that probably the majority of people with a psychiatric diagnosis go to great lengths to hide it most of the time (Isaksson et al., 2017). However, neither is the situation quite that implied in the oft-­ quoted statistic that one in four people will suffer from a mental illness in any one year (https://www.time-­to-­change.org.uk/mental-­health-­statistics­facts). Currently (2021) there is an explosion of mental health ‘talk’ and it would be much more than one in four. I deal with this later. However, the implication is that these individuals are randomly distributed across the population; it is said that ‘mental illness can happen to anyone’. But it has been known for three quarters of a century that inequalities are critically associated with who this ‘anyone’ might be (Hollingshead & Redlich, 1958). And sometimes attributes of marginalised groups are written into the very diagnostic categories themselves, as with racialised groups diagnosed with ‘protest psychosis’ in the late 1960s (Metzl, 2010). Borderline Personality Disorder is another example, matching as it does the extreme stereotype of the feminine. And yet anti-­stigma campaigns often proceed as if such arguments about determinants/associations and categories were irrelevant. Nonetheless, despite social isolation being a growing issue, mental health service users do often seek out each other for support, advocacy or campaigning activities. This was discussed in the opening chapter. In England and other countries, day centres and services used to be facilities where service users could get together in ‘safe’ places, regarded as a refuge from a hostile society (Sweeney, Gillard, Wykes, & Rose, 2015). Such spaces are now deemed a repository of ‘dependency’, and despite talk of social capital (Webber et al., 2014) and the importance of social networks for ‘recovery’ to be emphasised in ‘Recovery Colleges’ (Perkins, Repper, Rinaldi, & Brown, 2012), the idea that these networks might be composed of other service users is today frowned upon. Even peer support has lost its original meaning as we shall see (Faulkner & Kalathil, 2012). Indeed, recent initiatives seem designed to isolate and

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individualise by dismantling previously collective spaces. And yet, it would seem that service users resist this and find in associating with each other not only a real sense of support but one that can also take the form of campaigning and knowledge-making to reimagine a different future where they become, sometimes for the first time in centuries, agents of collective change rather than suitable cases for treatment or something worse. This does not entail a ‘community’ or an homogenous or universal engagement with all designated mentally disordered. To claim such would indeed be absurd given the distinctions between us. But it does mean that in unexpected places new resistances and resiliencies are formed that do not take normative shapes. That these are fluid and often local is evident but even in the small research projects to be described later, we at least partially engaged with them. And engagement of communities more generally broadens this (see Chap. 5). But we need to go beyond the descriptive and engage with what I called critical theorising in the last chapter. I argued that madness figures only weakly in the arguments of critical theories. So, if we are concerned with marginalised groups, then what kind of marginalised group are we; what marks us out as outside the mainstream? How, if at all, do the mad differ from other such subjugated groups? Up until now, I have deliberately given no ‘definition’ of madness or distress. Ultimately, I want an argument that is produced by us as to what mad knowledge constitutes and that entails engaging with the phenomenon (unless it is taken to be a myth, such as by Thomas Szasz and those survivors who follow him such as the World Network of Users and Survivors of Psychiatry (Szasz, 1976)). But I want to start by claiming that our status as a ‘marginalised group’ is masked by what psychiatry and society do not pay attention to, do not see or hear.

Collectives Talk of ‘collectives’ may seem outmoded, so I want to be quite precise about why collectivity is important for service users and survivors in the Global North. There are several factors at play but one of these is crucial. Experts—be they doctors, ‘psy’ professionals, priests or educators—

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position us as pathological at a fundamentally individual level. Mad people are unable to think rationally, incapable of coherent speech, are anomalous; they are positioned as isolated beings (and do become so often), unable to labour, as disordered in body as well as mind. The pathologisation that takes place in psychology and cognate spaces is, then, simultaneously an indvidualisation of a special kind. Treatment, be it medical or psychological, acts on individual bodies, strips people of their social settings or takes these to be, at most, marginally relevant ‘context’ (Jones & Brown, 2012; Sampson, 1989). We hear a lot about what such experts do, not so much about what they do not do. So it is perhaps not surprising that many people who have been pathologised in this way think they are the only person in the world who hears voices or cuts themselves or becomes energised to the point of explosion. When such individuals meet others like themselves, even inside a hospital or other facility, there can be a huge sense of relief that you are ‘not alone’. I have described this in detail and in a semi-autobiographical way as I have experienced it myself (Diana Rose, 2020). So, collectives or groups hold a special place for those designated mad because that designation positions us as having some deficit or disorder at a fundamentally individual level. The reverse— the group—then is both an unfamiliar space and a space of promise. What I want to argue is that there are processes and factors that work against this and they start when you walk through the door of the doctor’s office.

The Clinical Encounter There will be those who say I am devoting far too much time to psychiatry—we need to leave it behind. I agree but my reasons are different because they bear on what is absent in psychiatry. It is common for people to come out of an interview, especially an initial interview, with a mental health professional and say something to the effect of “I didn’t get to say what I wanted”. Kasper Pallesen and colleagues found this in a study of people being given a diagnosis of bipolar disorder (Pallesen et al., 2020). They taped the consultations and found that references to aspects of the person’s life were deflected back to matters of individual mood and

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cognition. Faulkner and colleagues interviewed people about their assessment for psychotherapy. They found a fear of judgement and of ‘not being listened to’, silenced in other words. Many said the experience was re-traumatising (Faulkner et al., 2021). These are two small studies, both with substantial service user contributions. However, the mainstream literature tends not to use ‘real people’ to find out about professionals’ views about what ails a person. Typically, they use vignettes (pictures with stories) and these vignettes again are light on ‘non-psychiatric’ detail (Meyer & Valença, 2021; Rundle et al., 2021). Often the objective is to look for ‘accuracy’ or ‘bias’ in how participants label or diagnose the person in the vignette. This is certainly not about the experience of being diagnosed and all that follows from it. However, the vignettes tell us something about the discursive systems of psychology and psychiatry. They are focused almost entirely on the pathological attributes of individuals. If daily life appears, it appears cast as abnormal. This is so even if the context is different—a vignette about a work interview, for example (Sugrim, 2021). Psychiatry is no monolith and an exception to this approach comes in the work of Rose McCabe who, sometimes using videos of psychiatric consultations, studies the communication patterns that characterise them. However, she focuses mainly on two things. First, people with communication impairments and the mental health consequences of these (Werle et al., 2021). More importantly, her preferred setting recently has been the Emergency Room where she has a particular focus on self-­ harm and suicide (Ford et al., 2021; Xanthopoulou et al., 2021). She is interested in how people are ‘understood’—both in terms of communication and conceptually—and how misunderstandings can lead to repeated self-injury. McCabe’s work does propose ‘social’ supports such as self-­ help groups and charities but as to why the self-injury is happening the focus is on ‘coping’ and ‘control’ by the person. Self-harm is almost invariably associated with a diagnosis of Borderline Personality Disorder whose ambiguity I stressed. There is again a private Facebook group about this diagnosis—PD in the bin1—PD standing for Personality Disorder.  There is a reason why ‘the Bin’ figures in the names of these groups. Yes, it means the trash. But ‘Bin’ is also slang for ‘psychiatric hospital’ and the names are playing on these double meanings. 1

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There is a service user literature that emphasises peer support and takes a ‘harm minimisation’ approach (Pembroke, 2005). This tends to elicit outcry at conferences; even conferences about harm minimisation as such in substance use. The difference between clean needles and clean blades is obviously symbolic (and turns stomachs) but harm minimisation is an example of a practical and local concept. Self-harm has also been addressed in terms of racialised groups, inevitably women again (Bhardwaj, 2001). One can sense in the bulk of this work a kind of ‘education’ to be a psychiatric patient, particularly the focus on (mis)communication. Let’s look at the initial interview again (Farmer et al., 1987). Some of the questions are bizarre to the person: Doctor: Did you reach your developmental milestones on time? Service user: Pardon? Doctor: Could you crawl when you were six months old? Service user: Don’t remember OR Count backwards from 100 in 7 s. I once got to −200 before the doctor put a stop to it. This last is supposed to test your ‘cognition’ and other questions are more clinical. People get used to this. It is a species of ‘induction’, which of course some resist and some never come back to the setting. But what is the source of the statement with which I started: “I didn’t get to say what I wanted”. What is the focus and what is missing in these diagnostic interviews and the routine check-ups that often follow? Because these encounters are underpinned by texts, courses, training, institutions and governing professional bodies, they are not discrete interpersonal events, much as it might be convenient to portray them as such. What is missing can be put simply. It is the person’s ‘life’, their social connections and communities, their housing and finances, their children and the hostile environment which many inhabit, the poverty, as we have seen. When someone tries to talk to the doctor about their coercive landlord, it is unlikely the doctor will approach the landlord. It may be seen as an ‘exaggeration’ or a ‘symptom of depression’ but not as within the doctor’s remit. Ultimately the problem may itself be seen as a symptom, following the idea that illness itself leads to terrible life circumstances, the ‘social drift’ hypothesis. This direction of causation is the reverse of what

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I propose (Hudson, 2005). To be concrete: I led a study into domestic abuse amongst mental health service users, interviewing both survivors and professionals. More than half the professionals said they ‘were not equipped’ and so would avoid the subject of intimate partner violence and even not reply if it came up. Survivors said mention of abuse was sometimes treated as a ‘symptom’ (D. Rose et al., 2011). This can go to extremes when it comes to ‘treatment’ as recounted by a participant in an interview study. Working in very run-down, ‘half-way house’ accommodation where people were living on virtually nothing, this participant witnessed three psychologists approach the residents and offer them a ‘new therapy’, quite a sophisticated one. The disconnect between the lives of the people in that residence and the idea of a structured, group and ‘radical’ therapy was lost on the psychologists but not on the residents. So social structures are avoided, and ‘new’ therapies introduced regardless of where and to whom because they are supposed to be universally applicable (i.e. context-free). Even where a professional apparently responds to reactions like this, their interest is in whether what the person in front of them is saying is reasonable; in whether the event, feeling or process is ‘credible’. Of course, there are exceptions and this situation comes in degrees. To recount single instances of the discrepancy between the register of ‘psy’ and the lives of most of their clients is not enough. Individuals and groups who have one such problem usually have many others and they are interconnected. But the mental health professional filters this complexity of life through the concepts and language of ‘psy’, hears it as largely symptoms to be treated, does not hear the life. There has been much work on the ‘medical model’ which tells us what it does and the consequences of this. I am simply adding that there are critical issues to do with what it omits, silences, what it does not do and a consequence of this is the prevention of group knowledge-making. Sometimes writers use the word ‘context’ to describe these aspects of a person’s life. In fact, this word comes up a lot in the mental health literature. But it is a cipher, it is not articulated. It is both over-used and underspecified. It has been elaborated by Ahonen and colleagues like this:

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Context … is not, then, a ‘variable’ or ‘background’, but a complex of power relations, discursive practices and forms of knowledge that need to be analysed. (Ahonen et al., 2014) epub

This ‘context’ is almost entirely absent, suppressed in psy theory and practice and leads to people on the receiving end of such ministrations being ripped from their life worlds, symbolically and actually. So, in practice, for example, if a client complains about their income, the psychiatrist or nurse is not going to speak to the DWP. They are looking for signs and symptoms in how the complaint is framed: they are looking for pathology within the individual. I do not say no professional takes it at face value: I am talking about patterns as instantiated in textbooks and training and so in practice. And as the above quotation makes clear, this is a matter of power. So, for those engaged with services you have to “tell your story”—to a doctor, sometimes multiple times to different ones. It may be seen as a ‘case history’. But the interlocuter is important—however upset and distressed the person is, what the doctor gets is crafted, selected, emphasising some things and minimising others. It is a performative in a very particular context (Butler, 2011). It can be contrasted with what I said in the last chapter—everyday talk amongst survivors in mental health spaces and outside. Ultimately, a patient may offer the doctor what that doctor takes to be a ‘history’, but it is shaped by rules that you gradually learn, mostly informally. What is important is the difference between this site of talk, what is talked about and how and what happens when the professionals are absent. It is fragmented, emotional, often focused on trauma but with a lot of dark humour too. What is absent in one space is present in another. This happens because the clinical interview is mandatory and because of the levels of power at work. I am interested in the ‘other side’, but it must be said that informal talk amongst patients is discouraged and this has increased with time as we shall see. So here, at the very heart of the ‘patient experience’, we have a process that militates against being a group at all. This links to my argument that if mad people are a marginalised group, this is masked by very basic processes, processes which are accepted as ‘scientific’. The picture is not confined to the academy or the clinic—experience, magazines, fiction,

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pictures. When do you see madness represented in the same way as other groups who are, in some way, recognised as marginalised, as having a contorted relation to power, however this is interpreted (Gilman, 1996)? There are classic films of the post-war years like The Snake Pit and One Flew Over the Cuckoo’s Nest, there are more recent TV documentaries about footballers and actors and geniuses struggling with their madness. There are biographies and autobiographies which are mostly either exposés of bad treatment in therapy or in hospital or ‘recovery narratives’ (see below) some of which are so scripted and hyperbolic they have been called ‘disability porn’ (Costa et al., 2012). There are some news stories in the UK today about austerity leading to mental health difficulties—suicide or death through malnutrition. Some take this seriously in the media and campaign for better access to treatment, especially for children and young people. But only very rarely is austerity itself held responsible, that it was lack of money, prospects or the possibilities of making a life that led to a person taking the route of suicide. Perhaps the cause of their suicide was madness itself? Not impossible but not necessarily. Decontextualising and individuating again. Isn’t suicide the most personal thing a person can do? Well. Seventy per cent of completed suicides seem to be ambivalent—they call for help but it is too late, which says nothing about the why they had no access to the help, support, financial security that they needed, though these forms of suffering can often be discerned as social despite the neutrality of coroners’ accounts. There is no link in the literature between Rose McCabe’s work cited above and the NHS digital survey quoted in the last chapter even though both deal with self-injury and suicide. So my argument is that these issues must be taken seriously before madness can be understood through the lens of critical theorising, before those deemed mad can be seen as a group marginalised on account of their madness, so that we are not just seen as sick individuals and weird at that. The social and collective conditions which led them to the point of being labelled—either professionally or socially—are hidden, they are hidden by the nature of the wide dissemination of the discourse of psychiatry and psychology in the West as well as in the specific clinical encounter. This also shapes how ‘suffering’ is understood (Rylko-Bauer & Farmer, 2016). I shall argue that this configuration masks, and masks

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thoroughly, our position as a marginalised group, indeed militates against us being understood as a group or community at all. I will address some of the implications for activism. I will mostly defer to the last chapter a discission of the forms of counter-narrative that exist, might exist and their concomitant practices and how to surface and implement them, drawing upon user-led research, theory and experiences of involvement in order to do this.

Out of the Hospital In the last chapter, I talked about how little communities may form in certain spaces; they may give rise to formalised activist groups too (Barnes & Bowl, 2001; Spandler, 2006). But now we are supposedly ‘living in the community’, do we have a better picture of the lives of severely distressed people? Are they indeed ‘living in the community’ because before we can address whether mad people constitute a marginalised group or a community, we need to revisit what I said at the start of this chapter. A single community certainly not. What I want to argue here is that there are practices that prevent the formation of communities or actually make matters worse on top of what happens in the clinical interview. They do not stamp out practices of solidarity, and I will come to this, but they try. First is that communities are not ‘romantic refuges’ but generally contain hierarchies and practices of exclusion. Patricia McGuire has examined patriarchy with respect to this in great detail and in relation to participatory research starting 40 years ago (Maguire, 1987) A lot of blame is laid on communities themselves in participatory research—I do it myself later with respect to ‘elders’ as gatekeepers who keep their mad folks out of reach of researchers. It may not be a bad thing, of course, rather than a matter of ‘blame’. Henkel and colleagues retort that participation has become a “spiritual duty” (Henkel & Stirrat, 2001). At another level, there is work which shows the huge discrepancy between how ‘community’ is used in official documents and what, if anything, it means to people ‘living in the community’ whom the study interviewed (Frederick et al., 2018). If the participants in Frederick and colleagues’ study interacted with anybody, it would be mental health

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professionals. Or they say ‘Good morning’ to the newspaper seller and that is it. Or take two buses to make a 200 metre journey to a mental health facility so that the neighbours would not know where they are going. This I found in my very first piece of commissioned research in this field (Rose, 1996). ‘Stigma’ hardly captures this kind of exclusion and its effects.

Can Communities be Developed? Relevant here is the community development literature. Community development and associated forms of participatory and action research seek to ‘develop communities’ and are said to be ‘asset-based’, that is, they build on a community’s assets rather than dwell on their deficits. Hence the importance of ‘social capital’ which in the mental health field has led to the production of a toolkit called the ‘resource generator’ (Webber et al., 2014). This is basically a list of who can do what for whom and I find it to be very instrumental with no attention to community ties and bonds. Perhaps this is because people are perceived as bearers of skills only. The community development literature and its use of participatory research (see Chap. 8) has been critiqued as to its methods and I will take one example of such a critique, authored by Rachel Aldred (Aldred, 2011). Focusing on the newest participatory methods, she demonstrates how they are based on social psychology and ‘positive psychology’ (I was not on the hunt for psychology articles, they just kept appearing). Positive psychology is mocked in many survivor circles for being ‘happy clappy’ when life is anything but. Nevertheless, the researchers believed that focusing on the positive aspects of a community would strengthen it if they engaged participants in a variety of interactions to emphasise community assets. Critical talk or photographs were discouraged. The ‘outcomes’ were favourable (although a little unclear). Aldred has three main criticisms. She argues that the work focussed on the inter-individual level and so occluded structural determinations of how the community existed and acted. Second, that the research ‘imposes’ an elite view of ‘empowerment’ as an individual achievement giving people a false sense of control. Finally, Aldred points to the suppression of ‘critical voices’. People who

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said negative things were quietly ignored, silenced. I would go further and stress that, although it may be denied, there are hierarchies in most communities, so those at the top often decide what to implement and this may be to the detriment of other sections. What of people in touch with psychiatric services? They are apparently often alone and have no reason to be ‘positive’ about their situation which likely really is a bad one. ‘Empowerment’ evokes some kind of fantasy state. The hunt for the positive makes terrible conditions unspeakable, and this is a brutal form of silencing. The loneliness often expressed by users of psychiatric services is put down to ‘negative symptoms’. So, if they ever were part of their own community, community development experts make things worse for their lives by silencing once again. A whole chapter could be written on ‘expertise’ and although experts are not an homogeneous group, I will argue that sometimes ‘experts’ do more harm than good.

 sychiatric Facilities and Policies as Obstacles P to Forming Groups As I said earlier, service users often do get together and find validation in each other’s company as well as having other goals. This, however, is often thought of by experts as an unacceptable form of ‘social network’ because it is not outward looking to the ‘normal world’, it is not ‘inclusive’. One place people used to gather together, as I said earlier, was at Day Centres. To an outsider, these seem pretty grim places. People seem to ‘do nothing’ except smoke. But it can also be framed as an embryonic form of peer support where just ‘being with’ others like yourself is settling. In 2009, one of the localities covered by my then place of work closed all its Day Centres. It was not alone, it became a widespread practice, and there were often campaigns. The reason for these closures? They fostered ‘dependency’ (Bonavigo et al., 2016; Chow & Priebe, 2013). We need social ties and we are interdependent people but the networks of the mentally distressed and their forms of dependency are not healthy, that is to say, not normal. The consequence of Day Centre closure was not that everyone was happily reintegrated into ‘the community’. More often they became

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distressed again or lived lives isolated on estates where they were at risk of abuse. This is not a subject mainstream researchers like to tackle but I have pointed already to a recent survivor-led study that demonstrates the frequency of hate crime against those with a psychiatric diagnosis living ‘in the community’ (Carr et al., 2017). Bad networks or no networks it seems and the wrong kind of dependency. Is there more to this attempt to ‘normalise’ those who do not ‘fit in’ socially or psychically? There is an interesting example of how such an approach can be made to work politically and personally, precisely when ‘therapy’ is politicised (Haggett, 2000). Haggett’s is a very local example but that is consistent with my original tenets. Let me briefly point to two practices that involved group settings that started with survivors but did not end with them—an issue that I develop further in a forthcoming paper. They are recovery and peer support and they have come to function as barriers to survivor knowledge and action (Clay, 2005; Deegan, 1988). This is because they have been changed at the hands of policy makers and professionals. These have not, however, quite succeeded. Although begun by survivors, they were then picked up (co-opted) by psychologists in the main and turned into a form of psychological treatment (Harper & Speed, 2012). In the case of ‘recovery’, Mike Slade entitled his book Personal Recovery (Slade, 2009). Larry Davidson is his counterpart in the USA (Davidson et al., 2005). In this ‘treatment’, mainly targeted at people with psychosis, ‘clients’ are supposed to choose their own goals and work towards them, with a meeting to monitor progress weekly. But the idea that people choose their own goals is disingenuous because certain goals are prioritised (work, family, education) and others off limits (stay in bed for a week because it improves my mental health; stay away from a damaging family). The goals in other words frame the person as if they were necessarily striving towards being a normal individual with a strong emphasis on autonomy and choice (Davidson et al., 2005). The ‘groupness’ of the original process was lost. And, of course, some people were unable to meet their goals and so ‘recovery’ became one more thing at which survivors could fail. There are other approaches to recovery, and some groups at the intersections of mental distress and race frame recovery differently and this was also a finding of the interview project (Kalathil et al., 2011).

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By turning recovery into a psychological treatment and mandating who you can mix with, we see again how the psy sciences individuate distressed people and actively deter them from mixing with one another. This is another reason why activist groups may go ‘underground’ because they see quite plainly what is going on. Recovery in the Bin coined the term ‘Neorecovery’ to show how the approach fit with a ‘neoliberal’ focus on individualism, autonomy and choice. There is no hint that choices may be severely limited by the settings people inhabit, that ‘autonomy’ is impossible with ‘multi-disciplinary treatment’. Because once again, the approach is positioned as universally applicable, a characteristic of mainstream science as I have said. What do survivors think of this? Danielle Landry discusses recovery in the context of a discourse analytic investigation of user-led research (Landry, 2017). She notes that the value accorded the approach by survivor projects varies from very strong endorsement to complete deconstruction. There is no agreement. She interrogates in depth the methodologies used showing, for example, that modes of data collection put very strong constraints on what the ‘results’ can be; that the epistemological underpinnings of a study determine quite tightly what can be concluded. These are not new observations but as an example of user-led research it is compelling. In this she is joined by Jan Wallcraft who wonders whether recovery, in the sense originally meant by recipients of services, can “survive operationalisation” (usually a questionnaire) (Jan Wallcraft, 2012). But Landry also argues that ‘recovery’, for some, has become a new and unquestioned taken for granted: this definition (of recovery) reproduces the common metaphor of recovery as a journey or path, which individualizes the experiences of madness. (p15)

This paper is consistent with the conclusion I proposed at the start of this section: that the ‘Recovery’ approach is an individuating and normalising endeavour. This is an example of counter-knowledge and Landry is not alone in putting the survivor perspective here. There are personal accounts and reference to social justice principles (Bassman, 1997; Howell & Voronka, 2012). The approach has been taken up by many governments now, but the survivor voice, academic and activist, is growing, not being

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silenced. I go into much more detail here in a forthcoming paper. I am not arguing that nobody seeks ‘normality’—of course they do given their conditions of existence (Lofthus et al., 2018). I am arguing that there is a body of knowledge that problematises the very idea when it comes to madness. And it is survivors, collectively, who are producing this knowledge. Many clinical academics make a nod to the beginnings of Recovery in the survivor movement. However, the following shows that, for them, this is not enough, that science triumphs: Although recovery has emerged from the lived experience of people experiencing what professionals understand as mental illness, scientific research is catching up in its ability to validate the assertions of service users and their families. (Slade et al., 2012) (p.2)

So at the end of the day, service users make ‘assertions’ and science ‘validates’ them—or not, as the case may be. The battles are multiple but the ‘science’ is unsettled. I have spent some time on the ‘Recovery Approach’ and will now briefly allude to what has happened in the case of peer support. Here, we are seeing the development of what is termed the ‘peer workforce’ and this is spreading throughout the industrialised West. Typically, these are individual service users who become part of voluntary or statutory services. Oftentimes they are the only peer in a team. They are supposed to use their ‘lived experience’ to help people who are not as far along in their ‘recovery journey’; help such people to progress. So Recovery and the Peer Workforce are linked. A systematic review argued that the presence of such peers was helpful (Lloyd-Evans et al., 2014). However, participants in the interview study detailed the impossible position these peers occupied. On the one hand to disclose personal details that could be helpful, on the other not to go ‘too far’. But knowing where the boundary is constitutes a major dilemma for peers working like this. It is a fine line between being helpful and ‘going too far’; where is that line? They are like what implementation science calls “boundary spanners”—but without a boundary. They are also the lowest paid members of the team and typically do not have access to notes and records about the very people they

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are helping. That is, they are denied knowledge crucial to their work. So instead of a peer support group—which will be discussed in Chap. 7—we now have individuals supposedly supporting others but also sometimes to the detriment of their own mental health. This is often reported in the blogs written by such workers (e.g. Tamara and Holly on wordpress). User researchers are sometimes included as part of the Peer Workforce and I shall develop this in the next part of the book. In recent times, Peer Support Specialists (PSPs) have become even more distanced from the original meaning of the role, especially in the USA and Australia. They are handmaidens to clinicians and in demand because they are cheap. They have become the ‘go-to’ solution for over-­ stretched services and monetised because they are ‘cost-effective’. They have lost the original commitment to social justice and social transformation and function to complement, but in a subsidiary role, the clinical team with its medical approach. This has been intensified with the development of digital apps with ‘start-ups’ popping up everywhere, always aimed at individuals. Again, the COVID situation encourages this. And once again, when it comes to research, the first authors on papers, the leads of the research, have no grounding in peer support themselves, its history, its collective nature or its practice. The link between social transformation and peer support has been broken (Jones, 2022). But, as always, there is a backlash, people striving to mend that link and we will meet it again in Chap. 7. The purpose of the above arguments is to show that ‘experts’ often work against any form of solidarity amongst service users. We are treated as individuals—pathological ones—and not part of any group or community. This, as said, has been linked directly to austerity—cuts in welfare services and funding that have ensured that there are very few alternative supports available and a blanket of individuation covers us (McWade, 2016). This was the argument about ‘austerity’ in Chap. 1. So, if it is hard today to conceive of mentally distressed people as belonging to groups and communities, this does pose problems for the adjective ‘marginalised’. We are marginalised as individuals: the adjective doesn’t seem to have a common noun. Still, let us proceed.

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Survivors as a ‘Marginalised Community’ Mainstream writers will contest the above—they will say that they do work with and on marginalised groups. So let me briefly show the distinction between the word ‘marginalisation’ or ‘marginalised group’ in respect to mental health in mainstream literature and what I am arguing here. That is, I will argue that the concept found there is different from the way that I have been articulating it in this chapter, which is to say social marginalisation of a social group. To begin with, the context is nearly always a health one and sometimes education at school. ‘Marginalisation’ in this literature is closely linked to the ideas of some groups being ‘hard to reach’ and ‘hard to engage’ in services (Dowrick et al., 2009). As Bucci and colleagues argue, this lays the blame on the group while in fact what is ‘hard to reach’ is ‘services’, not the groups themselves (Bucci et  al., 2019). Their answer, therefore, is to change services, not other aspects of the social that might be contributing to the ‘need’ for services, if such there is. Ideas of inequity and social justice barely figure here—the marginalised, and this includes the mad, are a demographic not a devalued group or one with a different perspective. So what they are marginalised from is specific, it is health services. At least, that is the setting in the papers I am about to discuss. If this seems obvious, I shall unpack the status of the ‘obvious’ presently. With this in mind, I would like to give three examples of how this idea of ‘marginalisation’ figures in the mainstream literature. First, Priebe and colleagues conducted an ‘expert group’ to determine ‘good practice’ for marginalised groups within mental health populations (Priebe et  al., 2012). It is important to note that in some of the literature, it is those deemed mentally ill in total who count as ‘marginalised’, whereas in others it is specific groups especially marginalised within that totality. Priebe’s work is an example of the second. The main thing for our purposes about this work is that characteristics of a ‘good’ service for marginalised groups in mental health were decided by ‘experts’, predominantly psychiatrists. There was no attempt to engage with those who might be recipients of these services. This runs contrary to what I will argue throughout this book, where survivors should be the knowledge-makers. As to the

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meaning of ‘marginalised’ in this paper, it does appear to equate with ‘hard to engage’ with the goal of the exercise being to ‘engage’ more people, to bring those on the margins to the clinic. It does not occur to the researchers that there might be valid reasons why such groups find services not just unwelcoming but sometimes damaging. And one reason for this is the nature of the psychiatric encounter which I have described. A second example comes from a collection of papers edited by Bhopal and this time the setting is education and the focus is gender: Gender, identity and experience: Researching marginalised groups (Bhopal, 2010). There are 23 chapters in this book with only one coming within the realm of mental health. It is a study of girls with autism in a mainstream school and the different and sometimes subtle ways they are excluded by their peers. Aside from being the only chapter on our topic, it is no accident that the setting here is educational. ‘Autism’ as a diagnosis is often characterised as including ‘learning difficulties’. The authors themselves call it a ‘hinterland diagnosis’ and this is telling. There are many diagnoses in psychiatry which are so vague or so mixed that they are difficult to comprehend. Borderline Personality Disorder started out being defined as ‘on the border between neurosis and psychosis’ but that is not its meaning now. Many diagnostic categories include a kind of dustbin classification known as ‘not otherwise specified’ (NOS)—psychosis NOS; anxiety NOS; eating disorder NOS and so on. This ambiguity, the fuzzy boundaries do not make for a coherent representation of a group, which may be a condition for seeing it as marginalised. A final example comes from a paper by Buhagiar and colleagues (Buhagiar et al., 2011). Their ‘marginalised group’ is people with SMI (Serious Mental Illness), a category invented in 1999 at the time of the National Service Framework for Mental Health which I will mention again. The SMI are deemed to need the most ‘input’. This paper looks at the physical health behaviours of people labelled SMI. It discovers that they feel they do not have much control over their physical health. This the authors explain in terms of the social psychological theory of ‘locus of control’. The participants, argue the authors, have an ‘external locus of control’, seeing themselves as lacking agency and controlled by others. Clearly, to me at least, articulating ‘marginalisation’ in this way has nothing to do with the ways that critical theorising conceives of

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marginalisation. We could say the participants were breaking norms of a quotidian sort—diet and exercise—but they were not doing this as a group and, a point which will become important, the researchers do not treat them as a group, they were engaged with individually. Equally, one could say the participants were right—they were deprived of agency and control in their everyday lives—this is one meaning of ‘disempowerment’. And the silent point in many discussions about this is that medication makes you put on weight and sedates you, complexifying the emphasis on diet and exercise. I can vouch for the fact that psy professionals rarely mention this. I have been at dozens of presentations on the physical ill-health of this group and medication side-effects are never mentioned. Until I raise them: which elicits a sheepish nod. So, I would argue that somatic ill-health amongst some designated mad is iatrogenic. These are people part of whose marginalisation is a result of ‘treatment’, although the researchers in this study certainly do not see it this way. I do not argue that no ‘mainstream’ work makes use of concepts like the social model of disability (which sees disability as socially determined) or intersectionality. Cheraghi-Sohi et al. are an example (Cheraghi-Sohi et  al., 2020) in their work on patient safety for marginalised groups. However, their conclusion about the social model is that the social determinants of disability are intractable and all we can change is services. This seems exceptionally weak and pessimistic as well as impractical. To return to the study, although people with mental health problems are included, they figure in the discussion section only once regarding trust between professional and patients and are grouped together with people with cognitive impairments and communication difficulties. This paper was published in 2021 and as I write in June 2021, it has had 98 citations. This either says something about the quality of the paper or it tells us where contemporary interest is concentrated. Patient safety is a major policy concern but some harms are silenced, a position especially taken by carers (Ocloo, 2010). I conclude that although the mainstream literature uses the term ‘marginalisation’ in respect of mental health, its use is sparse and the term does not equate to the concepts of marginalisation and subjugation as I have interpreted them in critical theorising. There is no reference to social justice nor to inequity other than ‘inequalities in heath access’. In other

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words, these papers are about people who are ‘marginalised’ from health services; not socially Othered. As I said, the centrality of health may be ‘obvious’, but the obvious often hides significant absences. I shall return to this throughout the book.

Counter-Narratives from the Mainstream Over the last 20  years, there has been something of a backlash. Bruce Link and Jo Phelan have rejected mainstream work on ‘stigma’ with its focus on individual attitudes and drawn attention to social conditions as the fundamental causes of illness (Phelan et al., 2010). Laurence Kirmayer, writing in the context of Global Mental Health, argues that psychiatric nosology and the instruments it uses to assess individuals have been formulated for Western modes of distress, if they even capture this (Kirmayer, 2006). Paul Farmer and colleagues have argued for the need for physicians to think beyond individualised biomedicine and to recognise that suffering from poor health and disease is an outcome of social inequity and a result of structural violence, a result that is embodied (P. Farmer et al., 2004; Rylko-Bauer & Farmer, 2016). Killings in the criminal justice system in the USA and deaths whilst waiting for assessment in the UK can now be understood as a result of coercive practices. Structural violence can manifest frankly or it can be more subtle and complex as I have tried to show in my examples above. A proper engagement with this work would take a whole book. More can be found on this perspective in the last chapter. As well as an analysis it offers some strategies for change. I have emphasised the importance of structures, norms and boundaries—a way in which people are designated ‘Abnormal’. Indeed, most psychology undergraduate curricula contain a module called ‘abnormal psychology’, although there were some recent attempts to change this. We are a subject—an academic one this time—a subject ‘taught’ to the professionals and leaders of the future. The designation ‘abnormal’ is also classed—and, of course, intersects with other subjugations. But ultimately abnormal psychology courses teach students about individual pathology. It is often used in the sense of ‘immoral’. Feckless, weak, violent, one-parent families who could easily get a job but

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leech off the benefits system instead and are often pictured as immigrant. And they ‘clog up’ mental health services. My analysis is just too ‘rational’ for many, who find the Red Tops a better source for their opinions, which argues for some media campaigns that have happened from time to time.

Activism None of the above means that user or survivor groups are absent, historically or today as I showed in the opening chapter. There I concentrated on those less visible who tend to have less ties with formal structures. Other groups do engage with authorities but they walk a fine line. First, groups may be ‘networks of networks’ nationally in the UK (the National Survivor and User Network (NSUN)) or internationally (the European Network of (ex) Users and Survivors of Psychiatry (ENUSP)). NSUN’s network includes grassroots organisations, but a recent survey showed that these were closing at a very fast rate (NSUN, 2019). The importance of small local spaces is lost on or discouraged by the mainstream and there is a huge problem of funding which of course links to the closure of other collective spaces. A more historical ‘snapshot’ can be found in Jan Wallcraft’s study of the user movement in England in the early years of the twenty-first century (Wallcraft et al., 2003). Sometimes more formal groups are ‘invited’ as when authorities seek to consult with those with other expertise to increase reach and grounding. An organisation, including government national or regional, will organise a range of ‘stakeholders’ to assist their work, but the organisation sets the agenda both in terms of who will be invited and what their role should be. In other words, they pull the strings and very often stakeholders come away disappointed, feeling they have been used to rubber stamp decisions taken elsewhere. This can happen with very large consortiums or at a much smaller scale. Often, it is because the knowledge and value sought is understood differently by the two constituencies. It is an example of unaligned knowledge and discursive meanings and practices and, especially community groups, can feel misunderstood, even exploited. Writings on these questions are replete with the word ‘complex’ (Reeve et al., 2013).

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When it comes to building knowledge and practice by marginalised groups, there is often no option but to work with the establishment. But marginalised groups want a ‘seat at the table’ not just because they seek representation there but because they are critical of established knowledge and policies and seek change. So the question of power is never far away although people often write about such situations as if it was absent. A good example is the notion that people with mental health difficulties can enrich knowledge and policy by supplying the ‘experience’ of living with such difficulties and that the academic and experiential discourses will work relatively smoothly together (Noorani, 2013; Sunkel et  al., 2021). But for many the mainstream knowledge base does not speak to their experience at all. This can be dealt with by dismissing people as ‘complainers’ or ‘angry’ rather than see that it is a question of a knowledge clash and a clash of ways of working. By not acknowledging this, survivors are downgraded as knowledge-makers and contributors to policy which is a form of Fricker’s ‘epistemic injustice’ (Fricker, 2007), rejecting an argument on the grounds the speakers are not credible knowers. Collaboration, partnership and coproduction are not possible when knowledge is not recognised as knowledge, when expertise is not recognised as expertise. And expertise is understood as a property of individuals even if they are interchangeable. Another way this can work is where groups are especially convened around a particular piece of policy. This happened with the National Service Framework for Mental Health in 1997 which aimed to rationalise services in England. As with nearly all such endeavours every ‘stakeholder’ had to be represented—doctors, nurses, lawyers, administrators and bodies representing them. Cleaners were absent even though survivors may say you can have ‘real conversations’ with cleaners. And eight service users were invited. There was no rationale for these eight, they did not represent organisations, they were apparently randomly selected individuals and they complained about this. They were separated and allocated to different ‘work groups’ and no attempt was made to align this with interests and expertise. These persons were not encouraged to form a group themselves, structurally this was discouraged. So once again we see the blocking of collective work. I interviewed all but one of these representatives for a study which examined the state of play in the user

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movement in England in the early twenty-first century, referred to above (J Wallcraft et al., 2003). Five of them did not last the course and all said they would never do it again. Two were Black people and the experience seemed like torture. They faced racism from some of the white service users and were ignored by the Black professionals. One broke down in tears speaking to me and disclosed having therapy afterwards to deal with the trauma. These were people with decades of experience and developed arguments. But the environment was so alien and fragmented that they were unable to contribute as they should have and could have done. They were silenced: experts silenced. And I am quite sure this will come as a complete surprise to any of the professionals at those meetings should they read this. They did not understand the position they were putting the survivors in. And they are mental health experts. There are many examples like this but I prefer to deal with a few in detail to give a full sense of what goes on. It is an object lesson in how not to incorporate the survivor voice. Preferably it is ‘forgotten’ because it failed. But if it is unearthed just maybe people will learn from their mistakes. And of course there are more successful examples, but they tend to engage people who ‘know the rules’. I shall give some examples later in Chap. 5 on ‘Coproduction’. Finally, some things are very basic. People will be consulted if they can get to places easily, if the building is accessible, if there are sign language interpreters, if they can organise child or other care. Payment is a thorny issue I will raise again. Another basic issue—surprising maybe—is that it is not just a question of being invited to the table, the spaces where ‘involvement takes place’ have a set of rules of how to ‘be’ round that table: the hierarchies to be respected, the time-limited, structured agenda, behavioural norms such as politeness, the turn taking that must refer in some way to the contribution that went before meant discussions had a certain form, however apparently innovative the content. This kind of ‘meeting’ is congruent with certain ways of thinking: a closed way of thinking where contradictions are there to be resolved not opened out, where ‘arguments’ are there to be won or lost, not to be generative. Food and drink are banned, symbols of sociality for some. Such places are not so easy for those who occupy spaces of madness and indeed that thinking is

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banished should it ever erupt. Which begs the question of whether there is anything intrinsically valuable in other ways of thinking, mad ways of thinking, or at least in ways of organising and reflecting that give rise to ideas that are not closed, do not obey syllogistic rules? One Maori informant in an interview project put this with clarity and cynicism: ‘meetings’ for them were alien events. Which again raises questions of power as their group were not the organisers: they would never be in the context of colonisation.

What Is to be Done? The next part of the book is concentrated on user engagement in and user-led research, research that represents our lives differently to that of the mainstream. This spans work done by small independent groups to the work of survivor academics, so-called. It is important to stress that user research, at the start, grew out of activism and my references to Recovery in the Bin show it still does. However, this is no longer consistently the case and this poses problems. To make social transformation and the place of survivor research in it successful would take money—a lot of money. But mental health services are costing billions already. At the same time, user research has had some success in working, researching, evaluating small-scale initiatives either in geographical or identity communities (Faulkner & Layzell, 2000; Piat et al., 2015; Diana Rose et al., 2016; Voronka et al., 2014). Again, the focus on the local is consistent with the position in this book. But I have no recipe book to offer here; topics and methods should emerge with substantial input from local communities. I will link this to the question of Mad Knowledges in the Conclusion. At the other end, there is now a tendency to think of user research as primarily qualitative. But there are survivors with formidable statistical skills. Radical researchers who are service users can interpret statistics in a way that runs counter to negative conclusions about new approaches to minimising distress and maximising well-being, if the data warrant it. Slasberg et al. have done this with complex statistics on personal budgets, demonstrating how they maintain people in poverty

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instead of the reverse which mainstream researchers claim (Slasberg et al., 2012). Would Mad Knowledge be different in any other way—more able to hold contradictions, seeing the different meanings in words and connecting things up in ways that others don’t. For myself, the omens are not good here but maybe there is an opening. As I said, I wrote at first a version of this chapter and one other through madness—my own. It was gently damned. Yet I didn’t reject it—I changed it in the version you have just read—whether or not successfully is for the reader to judge. Maybe it was unintelligible because there is as yet no public discourse on these experiences apart from the ‘psy’ ones. I will argue in the last chapter that there is a ‘hermeneutic gap’ around experiences currently unintelligible to others. And remedying this gap could be a step forward. Changes in knowledge and any associated activism have been and will be resisted by the mainstream. Sometimes directly but often by ‘co-­ option’ as in the case of recovery and the peer workforce. By which I mean that researchers and policy makers will take an idea that arose with survivors and claim that they invented it themselves. In the process they change it and it is almost always a change from a collective practice to an individuated one. A good example is ‘recovery’. This is now enshrined in Government Policy in the UK and New Zealand. It has been heavily criticised as I showed above. Briefly, summarising the research for our purposes here, it has been argued to be not just individuating but normalising and normalised to a particular image of the autonomous, well-­ networked, stably employed individual with choices that many survivors simply cannot live up to (Harper & Speed, 2012; Diana Rose, 2014). We also must contend with peer workers, Recovery Colleges and general phenomena such as ‘empowerment’. The point here is that all started life as in some sense collective endeavours standing against the mainstream but each ended up as roles or organisations based around the idea of a normally functioning individual. And this happened largely because psy professionals, and particularly psychologists, claimed ownership of peer support, recovery and empowerment and transformed a discourse or practice that had started life quite differently. And in that transformation the original idea is silenced.

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The argument that psy individuates and obscures systematic and interpersonal determinants of disability is put very strongly by Dirth and Anderson who speak of the ‘hegemonic psychology science’ (Dirth & Adams, 2019). However, their focus is on ‘disability’, and although they do include ‘mental disability’, they are no more specific than that. Other approaches that I have discussed are so ambiguous that it is hard to tell if they include a focus on mental troubles or not. This has implications for activism: there exists a ‘neurodiversity’ movement with which people with autism can align, and while some suggest that this can be seen as part of the survivor movement, this view is controversial and needs more discussion than I can give here (McWade et al., 2015).

Conclusion In conclusion, I would argue that there are specific difficulties in seeing people deemed mad as a ‘marginalised group’. This stems from the intense individuation and stripping of the context of their lives I have described from practice to policy to research. Although this individuation is general, it has specific features for those deemed mad. These are captured in Fricker’s concept of ‘epistemic injustice’. One important part of such injustice is that you are not believed when you bear witness to your own experience. Being treated this way is demeaning and horrible, sowing self-doubt in some. The other part of Fricker’s argument refers to ‘hermeneutic injustice’, that is, the absence of a narrative, a discourse, a social communicative structure through which you can articulate and begin to re-think your experiences in however small steps. The available hermeneutic narrative is mostly medical and psychological and subject to the problems I have sketched above. Survivor research and activism is trying to clear this space and substitute other narratives, other frames of meaning, but it is a hard task, not just because this work lacks funding but for many other reasons (Rose et al., 2018). The question is whether we can go further, beyond critique and oppositional alternatives to create genuine Mad Knowledges, including research. In the concluding chapter I will sketch a pathway, the conditions for this. But one of them is that there is a community or communities. From Popper to Bachelard, from

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logic to imagination, it is argued that a body of knowledge only has validity if there is a community which holds some basic consensus on it (Popper, 2005; Smith, 2016). And so we need to address the question of community again. My peer reviewers wanted a ‘mad epistemology’. I hope they will only be slightly disappointed. We are in a paradoxical position—supposedly lacking reason and yet imagined as responsible for our own situations so that change is equally our responsibility. But demonstrating that narratives and practices in this field are occluding the social settings which people occupy, masking their lives and their consequences, including consequences for knowledge, would be an important brick to take out of the wall. We have to start somewhere—or pluralise that.

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Farmer, P., Bourgois, P., Fassin, D., Green, L., Heggenhougen, H., Kirmayer, L., … Farmer, P. (2004). An anthropology of structural violence. Current Anthropology, 45(3), 305–325. Faulkner, A., Kelly, K., Gibson, S., Gillard, S., Samuels, L., & Sweeney, A. (2021). Respect for the journey: A survivor-led investigation of undergoing psychotherapy assessment. Social Psychiatry and Psychiatric Epidemiology, 1–9. Faulkner, A., & Layzell, S. (2000). Strategies for living: A report of user-led research into people’s strategies for living with mental distress. Mental Health Foundation. Ford, J., Thomas, F., Byng, R., & McCabe, R. (2021). Asking about self-harm and suicide in primary care: Moral and practical dimensions. Patient Education and Counseling, 104(4), 826–835. Frederick, T., Tarasoff, L. A., Voronka, J., Costa, L., & Kidd, S. (2018). The problem with “community” in the mental health field. Canadian Journal of Community Mental Health, 36(Special Issue), 3–32. Gilman, S. L. (1996). Seeing the insane. University of Nebraska Press. Haggett, P. (2000). Hatred of dependency. In Emotional life and the politics of welfare (pp. 159–180). Springer. Harper, D., & Speed, E. (2012). Uncovering recovery: The resistible rise of recovery and resilience. Studies in Social Justice, 6(1), 9–26. Henkel, H., & Stirrat, R. (2001). Participation as spiritual duty; empowerment as secular subjection. Participation: The New Tyranny? 168–184. Howell, A., & Voronka, J. (2012). Introduction: The politics of resilience and recovery in mental health care. Studies in Social Justice, 6(1), 1–7. Hudson, C. G. (2005). Socioeconomic status and mental illness: Tests of the social causation and selection hypotheses. American Journal of Orthopsychiatry, 75(1), 3–18. Jones, N. (2022). Lived experience Leadershil in peer support research as teh new Normnal. Psychiatric Services, 73(2), 125. Jones, N., & Brown, R. (2012). The absence of psychiatric C/S/X perspectives in academic discourse: Consequences and implications. Disability Studies Quarterly, 33(1), 1. Kalathil, J., Bhakta, R., Daniel, O., Joseph, D., & Trivedi, P. (2011). Recovery and resilience: African, African-Caribbean and south Asian women’s narratives of recovering from mental distress. Mental Health Foundation. Kirmayer, L.  J. (2006). Beyond the ‘new cross-cultural psychiatry’: Cultural biology, discursive psychology and the ironies of globalization. Transcultural Psychiatry, 43(1), 126–144.

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Landry, D. (2017). Survivor research in Canada:‘Talking’recovery, resisting psychiatry, and reclaiming madness. Disability & Society, 32(9), 1437–1457. Lloyd-Evans, B., Mayo-Wilson, E., Harrison, B., Istead, H., Brown, E., Pilling, S., … Kendall, T. (2014). A systematic review and meta-analysis of randomised controlled trials of peer support for people with severe mental illness. BMC Psychiatry, 14(1), 39. Lofthus, A.-M., Weimand, B. M., Ruud, T., Rose, D., & Heiervang, K. S. (2018). “This is not a life anyone would want”—A qualitative study of Norwegian ACT Service users' experience with mental health treatment. Issues in Mental Health Nursing, 39(6), 519–526. Maguire, P. (1987). Doing participatory research: A feminist approach. Paper presented at the Participatory Research and Practice, Amherst. McWade, B. (2016). Recovery-as-policy as a form of neoliberal state making. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, 5(3), 62–81. McWade, B., Milton, D., & Beresford, P. (2015). Mad studies and neurodiversity: A dialogue. Disability & Society, 30(2), 305–309. Meyer, L. F., & Valença, A. M. (2021). Factors related to bias in forensic psychiatric assessments in criminal matters: A systematic review. International Journal of Law and Psychiatry, 1, 101681. Noorani, T. (2013). Service user involvement, authority and the ‘expert-by-­ experience’in mental health. Journal of Political Power, 6(1), 49–68. Ocloo, J. E. (2010). Harmed patients gaining voice: Challenging dominant perspectives in the construction of medical harm and patient safety reforms. Social Science & Medicine, 71(3), 510–516. Pallesen, K., Brown, J., Rose, D., & Lawrence, V. (2020). An interpretative phenomenological analysis of the experience of receiving a diagnosis of bi-­ polar disorder. Journal of Mental Health, 29(3), 358–363. Pembroke, L. R. (2005). Self harm. Chipmunkapublishing ltd. Phelan, J. C., Link, B. G., & Tehranifar, P. (2010). Social conditions as fundamental causes of health inequalities: Theory, evidence, and policy implications. Journal of Health and Social Behavior, 51(1_suppl), S28–S40. Piat, M., Polvere, L., Kirst, M., Voronka, J., Zabkiewicz, D., Plante, M.-C., … Goering, P. (2015). Pathways into homelessness: Understanding how both individual and structural factors contribute to and sustain homelessness in Canada. Urban Studies, 52(13), 2366–2382. Popper, K. (2005). The logic of scientific discovery. Routledge.

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Priebe, S., Matanov, A., Schor, R., Straßmayr, C., Barros, H., Barry, M. M., … Holcnerová, P. (2012). Good practice in mental health care for socially marginalised groups in Europe: A qualitative study of expert views in 14 countries. BMC Public Health, 12(1), 1–12. Reeve, J., Blakeman, T., Freeman, G. K., Green, L. A., James, P. A., Lucassen, P., … Van Weel, C. (2013). Generalist solutions to complex problems: Generating practice-based evidence-the example of managing multi-­ morbidity. BMC Family Practice, 14(1), 1–8. Rose, D. (2014). The mainstreaming of recovery. Journal of Mental Health, 23(5), 217–218. Rose, D. (2020). On personal epiphanies and collective knowledge in survivor research and action. Social Theory & Health, 18(2), 110–122. Rose, D., Carr, S., & Beresford, P. (2018). ‘Widening cross-disciplinary research for mental health’: What is missing from the Research Councils UK mental health agenda? Disability & Society, 33(3), 476–481. Rose, D., MacDonald, D., Wilson, A., Crawford, M., Barnes, M., & Omeni, E. (2016). Service user led organisations in mental health today. Journal of Mental Health, 1, 1–6. Rose, D., Trevillion, K., Woodall, A., Morgan, C., Feder, G., & Howard, L. (2011). Barriers and facilitators of disclosures of domestic violence by mental health service users: Qualitative study. British Journal of Psychiatry, 198(3), 189–194. https://doi.org/10.1192/bjp.bp.109.072389 Rundle, S. M., Cunningham, J. A., & Hendershot, C. S. (2021). Implications of addiction diagnosis and addiction beliefs for public stigma: A cross-­ national experimental study. Drug and Alcohol Review. Rylko-Bauer, B., & Farmer, P. (2016). Structural violence, poverty, and social suffering. The Oxford Handbook of the Social Science of Poverty, 1, 47–74. Sampson, E.  E. (1989). The challenge of social change for psychology: Globalization and psychology's theory of the person. American Psychologist, 44(6), 914. Slade, M. (2009). Personal recovery and mental illness: A guide for mental health professionals (Vol. 34). Cambridge University Press Cambridge. Slade, M., Adams, N., & O'Hagan, M. (2012). Recovery: Past progress and future challenges. International Review of Psychiatry, 24(1), 1–4. https://doi. org/10.3109/09540261.2011.644847 Slasberg, C., Beresford, P., & Schofield, P. (2012). How self directed support is failing to deliver personal budgets and personalisation. Research, Policy and Planning, 29(3), 161–177.

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Smith, R. C. (2016). Gaston Bachelard, revised and updated: Philosopher of science and imagination. Suny Press. Spandler, H. (2006). Asylum to action: Paddington day hospital, therapeutic communities and beyond (Vol. 16). Jessica Kingsley Publishers. Sugrim, G. (2021). Hiring Candidates with Autism Spectrum Disorder (ASD): Effects of Diagnostic Disclosure and Presence of ASD Behaviors on Employability Ratings. Sunkel, C., Turtle, A., Gravel, S. A., Mwenja, I., & Abanga, M. A. (2021). Lived experience perspectives from Australia, Canada, Kenya, Cameroon and South Africa–conceptualising the realities. Mental Health, Legal Capacity, and Human Rights, 1, 316. Szasz, T. (1976). The myth of mental illness. In Biomedical ethics and the law (pp. 113–122). Springer. Voronka, J., Wise Harris, D., Grant, J., Komaroff, J., Boyle, D., & Kennedy, A. (2014). Un/helpful help and its discontents: Peer researchers paying attention to street life narratives to inform social work policy and practice. Social Work in Mental Health, 12(3), 249–279. Wallcraft, J. (2012). Consumer models of recovery: Can they survive operationalism? World Psychiatry, 11, 3–4. Wallcraft, J., Read, J., & Sweeney, A. (2003). On our own terms. Sainsbury Centre for Mental Health. Webber, M., Corker, E., Hamilton, S., Weeks, C., Pinfold, V., Rose, D., … Henderson, C. (2014). Discrimination against people with severe mental illness and their access to social capital: Findings from the viewpoint survey. Epidemiology and Psychiatric Sciences, 23(02), 155–165. Werle, D., Winters, K.  L., & Byrd, C.  T. (2021). Preliminary study of self-­ perceived communication competence amongst adults who do and do not stutter. Journal of Fluency Disorders, 70, 105848. Xanthopoulou, P., Ryan, M., Lomas, M., & McCabe, R. (2021). Psychosocial assessment in the emergency department: The experiences of people presenting with self-harm and suicidality. Crisis: The Journal of Crisis Intervention and Suicide Prevention.

Part II User Involvement in Research— England as a Case Study

3 History of Patient and Public Involvement in England

Background and Summary It may seem parochial to focus on the country I live in. But aside from giving me ‘insider knowledge’, England has a reputation of being a world leader in ‘user involvement in research’ and this is meant to reflect recognition that patients and the public can bring something to research that is otherwise missing but will lead to improvement if embraced. (Note that I will be using the word ‘involvement’ generically although there are many others.) It is not exclusive to mental health at all—it covers all medical, social care and public health research in the National Health Service (NHS). It is usually referred to as Patient and Public Involvement (PPI) in research. This is a bit of a mouthful but the language is important so I shall stick with it. Here I will give the ‘official history’ and then bring in some other perspectives which problematise this official account. The year 1996 stands for the date of origin, or Year Zero, as PPI then became government policy. That it became government policy is a signifier for ‘when it all began’, with the emphasis on ALL, which I will question. The rationale was that research by and with patients, rather than on patients (i.e. as subjects or participants), would make studies more © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_3

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relevant: regarding topics chosen, research conducted and means of dissemination. As a result, clinicians and patients would find interventions more amenable and they would be more readily implemented (Department of Health, 2012; Staley, 2009). Importantly, the UK government invested a great deal of money in PPI in research. It became a requirement that proposals for research should include an account of how patients and the public were to be included in the work. Hence, there was a financial incentive to do this and peer review committees could find these proposals unsatisfactory and send them back for amendment. Hence, authentically or cynically, did new proposals blossom. However, between my writing of the proposal for this book and the actual writing of this chapter, there is at least partially an ‘end date’. The major infrastructure body designed to ensure involvement in research which I shall describe—INVOLVE—has been dissolved, or, as official texts would have it, ‘merged’ with the NIHR Centre for Dissemination under the management of LGC, a private company in the chemical industry. The new name is NIHR Centre for Engagement and Dissemination. Involvement has disappeared. I have sight of a copy of the tender document but cannot cite it as it is not in the public domain. This merger was sealed in April 2020 amid much disquiet from members of the public, including an article in the British Medical Journal (BMJ) by one activist/academic mental health service user and one prominent person in the field of PPI (Carr & Boote, 2019). On the other hand, if one looks at the latest website of the main funder (National Institute for Health Research—NIHR), published in August 2020 (https://www.nihr. ac.uk/), there is a tab named ‘Patients and the Public’ with a six-line reference to the merger and many pages of activity that indicate nothing has really changed and that progress continues apace. Most recently on Twitter, I have seen mention (and have had email confirmation from Eleni Chambers whom I thank) about the proposal to dismantle the INVOLVE website with an invitation for people to prioritise what resources they kept, thus, potentially erasing some of this history in what is not kept. This is particularly so as one has to choose from a list of priorities already decided by the authorities so some things are removed by fiat.

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Additionally, INVOLVE, and its predecessor, Consumers in NHS Research, had an Advisory Group (originally ‘Support Group’) made up of patients, service users, members of the public and some professionals with an interest in patient and public involvement. The balance between these constituencies changed over the years, which we shall come to presently. The role of the Advisory Group was to embed and develop PPI in research and assist the small team of people who administered and co-­ ordinated the work of INVOLVE. But the tender document, recently won by LGC, proposed abolishing the Advisory Group and this did indeed happen. There was much consternation at the proposal and in the eventuality of this dissolution, voiced by existing and former members of the Advisory Group who felt deeply betrayed. I was, in fact, a member of this group between 2005 and 2011 so received numerous private emails as these changes unfolded and have had an interview conversation with the last Chair of the Advisory Group (20/09/2020—interview with Tina Coldham/confirmed 08/01/22). Later I will argue that NIHR, partly by dint of financial resources, ‘took over’ user involvement in research in England, shaping it as PPI, and therefore rendering almost invisible other work that was happening and this had implications elsewhere precisely because this work was seen as a ‘model’. But, for now, the last paragraphs perhaps demonstrate that writing the ‘official history’ of PPI in England’s National Health Service is currently more complex: first, because some of the fractures are publicly apparent; but second because there is always a tendency to (re)write history in light of the present—a kind of reverse Whig history in this case (Still & Velody, 1992). I cannot claim to avoid this, but I will begin by laying out a brief timeline—as ‘neutral’ as I can approximate, although there are some comments (see Table 3.1). I should warn the reader that some of what follows is quite technical and some may not want to read it in detail. The reason for its inclusion is primarily because it was held up as a ‘model’ of public involvement in research and some countries, such as Norway, emulated it. To involve ‘patients and the public’ as part of the research community could have made the boundaries of academia more porous. That it ultimately failed, in this and other things, means that there are lessons to be learned.

2006

2004

2003 2004

2001

2000

Department of Health establishes Consumers in NHS Research

1996

Comment

Author: I cannot ascertain why formally the DH did this but it was the start of an era of ‘involvement’ eg Griffiths Report 1989 Involving Consumers in Research and Author: Consumers in NHS Support Unit—individual authors list Development in the NHS: Briefing Note include just one ‘patient’: for Researchers Jan Wallcraft—a prominent survivor activist and writer Consumers in NHS Research expanded to cover public health and social care research Group is renamed INVOLVE Involving the Public in NHS, Public Uses terms ‘public’ and ‘service users’ interchangeably. Health and Social Care Research: Terminology will be significant Briefing Note for Researchers. Roger Steel/INVOLVE Support Unit Steel (2004) above also introduced http://www.invo.org.uk/wp-­content/uploads/2012/04/ continuum to map ‘degrees’ of INVOLVEBriefingNotesApr2012.pdf involvement: Consultation—Collaboration—User-­ Controlled By 2012 these were no longer a hierarchy or degree of involvement but ‘approaches’ National Institute of Health Research NIHR now main funder of research in English NHS. Sally Davies (NIHR) comes into being and INVOLVE head of Research and Development (and Chief Medical re-positioned as its ‘PPI Programme’ Officer). Supporter. Money available for PPI in research. Current head of R&D is Chris Whitty. Issue of ‘impact’ of PPI becomes central

Event, Publication, Meeting and so on

Date

Table 3.1  Timeline of Patient and Public Involvement in The National Institute for Health Research in England

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Nick Partridge stands down as Chair of the INVOLVE Advisory Group Simon Denegri succeeds as Chair Simon Denegri also becomes NIHR ‘National Director for Patients, Carers and the Public’ The multiplicity of roles in this organisation I appreciate is hard to follow. For this one, Denegri has two roles—Chair of the INVOLVE Advisory Group and the one above INVOLVE ten-year strategy document– Going the Extra Mile

2011

Simon Denegri’s Directorship renamed: NIHR National Director for Public Participation and Engagement in Research

Tender for INVOLVE goes to Wessex (SW England). Co-ordinating group has to move from Leeds (NE England—about 500 miles)

2015

2016

2015

2012

Event, Publication, Meeting and so on

Date

(continued)

https://www.nihr.ac.uk/documents/about-­us/our-­contribution-­ to-­research/how-­we-­involve-­patients-­carers-­and-­the-­public/ Going-­the-­Extra-­Mile.pdf In both Going the Extra Mile and the new title there is confusion around the terms ‘involvement’, ‘engagement’ and ‘participation’. Participation means increasing numbers in research trials and so on. These are tensions internal to INVOLVE.

This role revolved largely around increasing numbers as participants in research especially trials, that is, research on the public, the reverse of the original by the public (Author: My sense at time these 2 roles in conflict)

Comment

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Event, Publication, Meeting and so on

Comment

There is of course a raft of legislation associated with these developments. It would be too complicated to include them. A summary—not restricted to research—can be found in Diana Rose et al. (2014))

2017

Oxford Group : A Researcher’s Guide to This is the third ‘Researchers’ Guide’ but no equivalent for patients and the public who are directed to a website. This Patient and Public Involvement: A guide uses the term ‘PPI’ guide based on the experiences of health and medical researchers, patients and members of the public Tina Coldham had no governance role which Chair of the 2017, Simon Denegri ‘stands down’. December Tina Coldham becomes Chair of INVOLVE Advisory Group had previously. Weakening of role. Advisory Group 2019 INVOLVE: Coproduction in Action: 1 2020 Katherine Cowan/INVOLVE: Practical D&I This is part of the current ‘menu’ viz Coproduction, Diversity and Inclusion, Communities and Standards. https://www.nihr.ac.uk/ 2020 Very complex website under heading Very brief reference to new Centre ‘Department of Health: NIHR’ “The new centre brings together NIHR’s activities in patient Tab: ‘Patients and the Public’ and public involvement, engagement and participation with its strengths in research dissemination.” Includes last two references above (Coproduction and Diversity and Inclusion) INVOLVE Advisory Group abolished and Simon Denegri’s role as 2020 LGC wins tender for new NIHR Centre NIHR Director for Public Participation also goes. for Engagement and Dissemination The term ‘Involvement’ slides under the radar having once Jeremy Taylor: NIHR Director for Public been central Voice

Date

Table 3.1 (continued)

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I appreciate the above is a skeleton. I will try now to flesh it out through the lens of its own representation of itself and my analysis. As I say, this is in the spirit of learning from an endeavour that drew admiration from certain sections of mental health groups (though not just mental health as I have said and not all sections). To refer specifically to mental health, there are other structures that are important here—in particular the Mental Health Research Network (which was one of several networks established as part of NHS funding bodies to promote research in the NHS). I could write about this but I am not going to. Or at least will defer it to the next chapter. It was successful in its own terms (Patterson et al., 2014). But others were braver about the difficulties (Wallcraft, 2013). I am not going to write about it for reasons of anonymity and also because I was seduced and then turned critic. This was not the first time that I broke with my principles. Such is the power of academia for some. And not for others. INVOLVE also held bi-annual conferences that were very well attended and devoted quite a lot of space to mental health. These contributions tended to be amongst the most radical. The last conference was in 2018 and the place of mental health was diminished to a degree. We were a ‘feather in their cap and a thorn in their side’ as Tessa Parkes entitled her PhD. Disabled people held a similar position. There are three issues deriving from Table 3.1 that deserve quick attention here before moving on. All will be developed later. The first is language and what it represents in terms of what PPI is and does; the second is whether we can establish what is meaningful involvement and the third concerns changes in structures and what they meant for the nature of PPI.  A later but primary question pertains to what were the concrete changes that PPI made in the field of research and particularly clinical practice and what were the constraints on change? This includes the major issue of what is commonly called ‘Impact’ and is the subject of the next chapter, which will take mental health as its focus and be broader than the case of INVOLVE.

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Language and Representation At the start, user involvement in health research was clearly defined as research with and by the public not on the public. That is, patients and the public were positioned as part of the research community rather than as ‘subjects’ or ‘participants’ in the kind of research that characterises the health field. This did not preclude ‘engagement’, which was conceived as a kind of dissemination activity, but by 2012 these terms had slid together such that involvement and engagement were used almost interchangeably, and their distinct meanings blurred. Next came ‘participation’. In fact, the initial title for Denegri’s second role at NIHR was ‘Director of Patient and Public Participation’. This term itself was open to two interpretations: ‘participatory research’, in the tradition of Paulo Freire (Freire, 1996), developed for health research notably by Jocelyn Cornwall (Cornwall & Coelho, 2007; Cornwall & Jewkes, 1995), or ‘participation’ as subjects in research studies—the exact opposite of what ‘involvement’ originally meant. Unbelievably, some people used the two interchangeably (or were not familiar with participatory research). The focus on increasing recruitment to trials was symbolised by an annual ‘It’s Okay to Ask Day’ when INVOLVE worked with health providers to increase the numbers of people taking part as subjects in clinical trials. The ten-year strategy document of 2015 referred to in Table 3.1 has six main recommendations. The words involvement, engagement and participation are all used, and unless there is a better forensic semiotician than the current author, it is impossible to distinguish them in terms of their meaning. The point of these remarks is that it becomes very difficult to judge the nature, meaning and impact of ‘PPI’ when the term ‘involvement’ has become so loose as to what it stands for. Not only is it now ambiguous, but its value in this landscape has also been steadily demoted in that the term no longer appears in the New Centre title. When referring to the new iteration of what INVOLVE did previously, the acronym ‘PPIE’ is used: Public Participation, Involvement, Engagement. Involvement is squeezed between recruitment to research studies and engagement, whereas in this world ‘involvement’ started out as improving research by having patients and the public act as researchers. No longer.

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Further, in terms of language, there is the ‘PP’ part of the equation. Various documents referenced above use the term ‘public’ alone, ‘patients’ alone, both together and sometimes ‘service user’. At a presentation to the Advisory Group in 2013, it was firmly stated that INVOLVE only ever talked about ‘Public Involvement’. This is simply not borne out by the literature written by the group themselves. The statement represents a move away from the special expertise that people who live with a health condition, including mental health, hold to a generic ‘public’. There are areas where this is warranted—public health, primary care—but mostly research is undertaken into specific conditions and it is here that those who live with these conditions have most to offer, as will be argued later, largely in terms of mental health.

Who Is the Public? However, there is another issue at stake. With the move to a generic involved ‘public’, there arises the question of ‘who counts’ here as eligible to be involved in NIHR’s activities? Here are the criteria stipulated by one branch of NIHR (https://www.nihr.ac.uk/documents/applying-­for-­ public-­committee-­member-­roles-­with-­the-­nihr/23735) in 2020 in terms of ‘lay’ reviewers on grants we have an answer to the inferred reader’s question ‘Can I apply?’.

Can I Apply? We are looking for patients, carers, service users and members of the public who are interested in a broad range of health and social care issues and research, beyond their own personal experience. To ensure we do not have an overlap of skills, knowledge and experience with our professional committee members, we exclude applications to public committee roles from people who have, or have had, a professional role in health or social care services or research, for example:

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• Health and social care professionals such as social workers, health research managers, nurses, health or social science researchers, public health specialists, medical doctors, health economists, opticians, clinical research officers, pharmacists, etc. • Professional positions within a research management setting such as a Finance Manager, Patient & Public Involvement Coordinator for an academic and/or grant funded organisation. • Health, clinical and social care graduates at PhD level or equivalent. We do, however, welcome applications from user/survivor researchers. The current criteria above is under review for 2021. The review has not materialised yet. On the one hand, this could be understandable as an attempt to include people who are not professional or professionalised: to try to ensure that public involvement reaches outside of the research and professional establishments, the ‘elite’ mad I talked about in the opening chapter. However, there are many constraints: both practical and in terms of structures and discourses. Issues of class, gender, race, sexuality and so forth are critical and I shall revisit these questions recurrently. However, are we to assume that the ‘public’ is regarded as the non-educated masses? This does raise issues of class and gender, which further run through PPI requirements to be able to do work for free and during the day and so on, not to mention ways of thinking you need access to in order to work with the research establishment. For this is what it is: the public as ‘invited in’ to a massive machine, the academy. This point will be developed throughout the book but especially in Chap. 5. So the ‘public’ is quite narrowly defined. Eligible people must have interests beyond their own personal experience of ill-health, and academics or persons studying for PhDs are ineligible. The last sentence about user researchers was a late addition after some provocation by user researchers themselves in May 2019 (private email exchange). There are many issues here, one being that there is a lack of representation of marginalised groups in this space; however, that is no reason to disbar those familiar with research, it is rather a reason for expansion and diversity. It also seems not to occur to these writers that some sections of the public, as well as having practical constraints, simply are not interested in these

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activities or not interested in the way the invitation is offered. Some quite high-profile people said this explicitly. There is also an implicit assumption that somewhere lies the ‘authentic’ public contributor to INVOLVE and by extension any lay contributor to research. This is addressed in the academic literature when Ives et al. argue that there is a ‘paradox’ at the heart of PPI—the more you learn about research, the less ‘lay’ you are (Ives et al., 2012). This piece provoked a rebuttal too with the argument that those with direct experience of a health condition, even when highly educated, had a valuable part to play in Patient and Public Involvement in research (Staley, 2013). So we have a tension between a generic ‘public’ and people who have lived with specific conditions. There is also a sociological literature aiming to conceptualise and often critique PPI and arguing that the status and nature of concepts and organising such as ‘involvement’ and ‘PPI’ have a bearing on the nature of knowledge produced, a subject close to the heart of this book (Maguire & Britten, 2018). However, this focus on the ‘authentic lay’ begs another question: who speaks for the marginalised and disenfranchised communities who are unlikely to have the material resources to be ‘involved’ in research in the way desired? Indeed, is that the right question—“who speaks for them?”. Where does their own knowledge sit? The issue of who is a knowledge-­ maker and what kind of knowledge they produce is an arena of contention that will be developed at length in the next chapter.

What Is ‘Meaningful’ Involvement? The above is intimately tied to the next question. The call for ‘meaningful involvement’ is ubiquitous, but there is scant guidance on what this amounts to. I shall develop this in Chap. 5 but for now point out that in the INVOLVE literature the concept of ‘power’ is absent. Surely, this is relevant to ‘meaningful’ involvement and in many ways. Being listened to and heard is also essential and again I shall propose a theory that includes ‘misunderstanding’ in Chap. 5. As can be seen from Table 3.1, in 2004 Roger Steel’s ‘Briefing Notes for Researchers’ established a triumvirate that was indicative of the degree or strength of involvement. So, it was pictured as a continuum:

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consultation -> collaboration -> user control. ‘Consultation’ represented the weakest form of involvement and always ran the risk that the consultees would be used to rubber-stamp what had already been decided in research or policy (Peck, 1998). Collaboration referenced a partnership in research between users and professional researchers, but avoiding power differences was an ever-complex question (Barnes & Cotterell, 2011; Peter Beresford, 2002; D. Rose, 2003). The term collaboration was even sometimes used informally and as an insult in the sense of ‘collaborators’ in Vichy France! Terminology changed and the category was broken down in terms of which party initiated it but it was never satisfactory. The ‘term of the moment’ as I write is ‘coproduction’ with the sense that each party has something distinctive to offer but they are equally valuable (Faulkner et al., 2019; Williams et al., 2020). Indeed, as can be seen from the last few entries in Table 3.1, INVOLVE has its own working group on coproduction. This we shall revisit. In other words, having started with involvement I will end this section with it too but it will be a very different discussion inflected by what goes before and anticipating what is to come. That the ‘strongest’ degree of involvement in the original INVOLVE continuum was called ‘user control’ speaks to something significant. Whilst the assumption was that most PPI would take place in academic settings, ‘user control’ was reserved for the Voluntary Sector or NGOs. Peter Beresford was a strong proponent of this approach with his user-­ controlled organisation ‘Shaping our Lives’ (Peter Beresford, 2020; Turner & Beresford, 2005). The first of these pieces was published by INVOLVE. And mental health service users in particular were funded by INVOLVE doing this kind of work. Alison Faulkner studied research done by six user-controlled organisations and wrote Best Practice Guidelines with a Deaf organisation as exemplar (Faulkner, 2010). The budget here was small, but its very existence demonstrated that INVOLVE gave credence to this work. What we don’t know, but can guess, is the continuation or not of the funding of such user-controlled research by the new Centre. By 2012 (see Table 3.1) these three forms of research were no longer conceptualised as lying on a ‘continuum’ but as distinct ‘approaches’ to involvement. Making them discrete may better align with the forms of

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research that were happening but calling them all ‘involvement’ again makes the term very elastic and begs the question: if ‘involvement’ is what they have in common, what exactly is this thread that holds them? To be clear, I have no issue with fuzzy boundaries, non-binary thinking and even ambiguity. The problem arises when these are used to occlude, when terms like ‘involvement’ (and ‘engagement’ and ‘participation’) are presented as having singular meanings in order to preserve a veneer of scientificity. But perhaps most important is that to ask the question “What is meaningful involvement?” is posed at a general level. This hides difference. Involvement in research is more meaningful to some than others, more meaningful to those who already have some acquaintance with research. INVOLVE was trying to change its constituency, the new Centre still is. But until it finds a way of making research meaningful to a wider constituency, then the fragmentation and fractures we have seen will continue. So, for our purposes, we need to ask deep questions about what research is and what it is for if it is to be amenable to survivors who very often did not even finish their education. What is their knowledge and how can it contribute or how can those of us who inhabit this world see that this is a matter of social justice and this knowledge is valuable. It entails a change in what counts as knowledge, that is for sure. And it involves power. These are questions for all of us.

Power Power is a buried term in this discourse and there is a particular instance of it that requires attention in a new way. Power in research is multiple— from status to methods of research (see Chap. 1). The relationship between ‘professional researcher’ and patient or public contributor is one where the public or, in our case, survivors are basically handmaidens to the institution of research and those who populate it. In the contexts of various settings and in diverse ways, it is without doubt that the researchers hold power. They ‘set the agenda’ in Steven Lukes’ sense (Lukes, 2004). This I have explicated a little and will return to repeatedly. But an important instance is ‘whiteness’. The call for Diversity and Inclusion

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masks the fact that PPI in all its forms is marked by Whiteness. Indeed, the mainstream of involvement is composed of people with white skins and the structures and institutions, the very ways of thinking that are prized, derive from a Eurocentric positioning and structural advantage, possessed by white people within the education system, the criminal justice system, the health system and beyond. This is not noticed because it is the ’unmarked category’—the hidden norm against which everything else is measured (Brekhus, 1998; Frankenberg, 2001). Chris Bell has argued that Disability Studies should be called white Disability Studies (Bell, 2010) and the same could be said of PPI generally, including user-­ controlled research. So, returning to the discussion of intersectionality in Chap. 1, the call for increased ‘Diversity and Inclusion’ is starting in the wrong place. It locates the ‘problem’ in racialised (and other) groups rather than in the ‘unmarked’ but highly problematic background of Whiteness. Racialised groups are excluded from activities like PPI, and beyond as I shall argue, because the structures, the talk and the people in the room are marked, by Whiteness (Collins & Bilge, 2020; Kalathil, 2008). Basically, it is not ‘meaningful’ not in the sense that it is not understood but that it does not speak to what is meaningful in people’s lives. INVOLVE is not alone in this move, it is quite general across social institutions, including universities. I hope this is another instance where we can raise questions for how this might be done better and thrive rather than disintegrate.

Changes in Structures Changes in structures almost always entail changes in structures of power and changes, or stasis, in knowledge. The power we are concerned with here is that of the possibility of patients and particularly ‘mental patients’ becoming a meaningful part of the research community, in INVOLVE’s original language of being ‘involved’. Revisiting the arguments of Chap. 1 in respect of mad people being positioned as lacking reason or the basic capacity to think, hurdles might be anticipated here. I have argued elsewhere that the idea of the ‘mental patient scientist’ is an oxymoron, one cannot be simultaneously incoherent and logical, the latter being a

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requirement for science (D Rose, 2004). However, with INVOLVE, mental health service users are just one component of the panoply of the ‘lay’ persons who might accrue some power in the research field through involvement with Health Research. Above I have briefly shown how changes in language use have rendered the term ‘involvement’ loose or polysemic, and by this turn, the significance attached to the original articulation has been diluted. What counts as ‘meaningful’ involvement has a hidden complexity but also vagueness. Diluting language and meaning, and making the latter general, is a way of exercising power by reducing the once clear and novel into something banal and unimportant, a matter of tinkering at the edges, and thereby removing power from new actors in the field (Wandel, 2001). This movability of language in the history of INVOLVE was linked with structural changes. In Table3.1, I have focused on the history of the Advisory Group (formerly the ‘Support Unit’). However, INVOLVE’s work was underpinned also by a team of salaried staff, the Co-ordinating Centre. The two came together at Advisory Group meetings but most intensely around the bi-­ annual conferences of which there were four. The Co-ordinating Centre was a support to the Advisory Group but times of organisational significance involved them both. It would be breaking rules of anonymity to go into detail here as a small number of individuals made up the Co-ordinating Centre and so people might be identifiable. In addition to INVOLVE, there are large NIHR infrastructural collaborations which have ‘PPI leads’ and their work is summarised each year publicly on the NIHR website based on the relevant sections in Annual Reports. There were Patient and Public representatives on NIHR Central Bodies and also on all the Committees responsible for selecting which grant applications would be funded. So, PPI structures throughout the NIHR are complex and each reciprocally affects the others. But INVOLVE is the thread that binds them all. Or rather, it was, and so the future of these other structures, individuals and groups is unlikely to remain unaffected. One key organisational moment happened in 2016 although discussions began in the last half of 2015. The INVOLVE Co-ordinating Centre’s contract was up for renewal and this was put out to tender. At this point the Co-ordinating Centre was housed at the University of Leeds, in North East England. There was a sense in the Advisory Group

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that although there had been many successful initiatives, INVOLVE was losing its central mission to promote and increase involvement in research, to allocate the lay public the status and skills of a researcher. This I have touched on already but here we have the organisational counterpart. The tender was won by the Wessex Institute at the University of Southampton 500 miles away in the South West and so entailed a geographical move of substance for the members of the Co-ordinating Centre. There was a sense also that the tendering process and especially the transition process had been opaque to the members of the Advisory Group. I have written about this and so it is in the public domain, particularly the link between knowledge changes, power differences and organisational change. I did argue that we had reached a point where user-led research would develop better outside the remit of INVOLVE and so I do have a particular position and analysis and must be transparent about this (Diana Rose, 2015). It must be emphasised that views were diverse, as represented in an evaluation by the RAND organisation (Corbett et al., 2017). Pride in achievements was almost universal but so too was a sense that INVOLVE was very distant from Central NIHR and communication poor. There was also concern about the overall direction being taken by Higher Education which often entailed less value being accorded to PPI because it did not ‘count’ in academic metrics. The general context is significant and drives home that that context, the power dynamics, are academia with its hierarchy of persons and of methods. If you cannot change the methods you can change little (Diana Rose, 2017). In the event, three senior members of the Co-ordinating Group, including the Director, did not make the move to Southampton. It is not my place to speculate on why. A new Director was appointed and in post on 14 April 2016 and the Co-ordinating Centre team changed completely. Of course, this team was not homogenous in terms of approach or background, but the organisational change did align quite closely with the changes of direction described above. This is my analysis, but I hope it is evidenced. It would not be everybody’s as such changes are open to many different interpretations. And, indeed, work did begin and then continue on Diversity and Inclusion and Coproduction as we have seen. I have indicated some problems.

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But it seems organisational change then became endemic for INVOLVE and eventually led to its demise. The tender awarded to Southampton in 2016 should have been due for renewal five years later, in 2021. In the event the tender was announced in October 2018, amidst changes in the Advisory Group membership, a national internal survey and work on a set of ‘National Standards on Involvement’ as promised in Going the Extra Mile (INVOLVE, 2015). That is, the tender that was won by LGC Ltd in 2019 and the merger concluded in July 2020. I have said enough about this already but just to emphasise that these successive organisational changes were extremely difficult for INVOLVE—Advisory Group and Co-ordinating Group—to deal with. They entailed a definite shift in the balance of power regarding ‘involvement’ and its constituencies and the ‘merger’ changes the profile of ‘involvement’ considerably, including what it actually amounts to. The new Implementation Science language of knowledge mobilisation and publication expertise is certainly present in the Aims. However, as I write, the new entity is only one year old and so prediction is not tenable. One does wonder, though, if Central NIHR was finding INVOLVE and its tensions too difficult to accommodate. Or, even more laced with paranoia, that the ‘mainstream’ was quite happy for INVOLVE to tie itself in knots because the whole endeavour was just too challenging. In sum, there is an ‘official history’ of involvement of patients and the public in Health and Social Care Research in England. This history publicly represents itself in terms of positive evolution and growth. But there is ‘another history’, there always is, and what I have written above is my version of this, conceptually, linguistically, and in terms of who is included and who is not as well as organisational change. It shows that organisational and academic factors both impact and constrain knowledge production. But it is not ‘my’ version alone, it is not idiosyncratic, because as we shall see in Chap. 7 experience never is an individual matter. And even when dilution of significance and values occurs, there is always ‘overspill’, there is always a search for the legacy and someone working hard to revive the original principles. And develop them in a different direction. All this we shall revisit and develop in the next two chapters with more of an emphasis on mental health.

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Before this, I wish to address the way in which INVOLVE, and Consumers in NHS before it, made service user and patient involvement in research ‘their own’, as if these were the most important spaces where public involvement in research was happening. So, let’s look first at involvement in research or user-led research both before and outside the purview of the Department of Health in England. Let’s depart from the parochial, model though it was. One stream of work where this was certainly happening was in respect of mental health. So, following some other brief examples, I ask: what is different about psychiatry and its recipients, even on this small stage?

 esearch by ‘Lay’ People Outside R Official Structures The texts and the talk of PPI in research funded by the Department of Health all read as if this was the centre of gravity, if not the only space, where non-academics were involved in research. NGOs were sometimes grudgingly included but only insofar as they did the kind of research eligible for NIHR funding. That is, empirical research ordered first by the hierarchy of knowledge explicated in Chap. 1 and exclusive of any research outside this. According to this story, which I have already discussed, patient involvement in research began in 1996. But is this the case? Is there yet another underside to this history, in terms of ‘origins’ and associated events?

Hidden from PPI—Lay Research Indeed, in four domains of ‘health’ at least there was much research activity outside the confines of INVOLVE. First, was women’s activism to demedicalise childbirth. The wider endeavour to take women’s bodies out of the hands of medicine was first articulated in 1973 by the Boston Women’s Collective and has been much commented on because of its influence (Davis, 2007; Norsigian et al., 1999). In terms of research on childbirth, this has been summarised by Brubaker and Dillaway (Brubaker

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& Dillaway, 2009). A prominent example is Wendy Moyzakitis (Moyzakitis, 2004) who collected stories of women’s experiences of pregnancy and delivery. Two things are notable about this literature. First, the methods used are not the traditional health ones; they deploy a form of story-telling, or participatory, methodology with the focus on women’s own experiences (O’Brien et al., 2017). Second, they are quite explicitly political, coming from a feminist perspective or explicitly using feminist standpoint epistemology (Harding, 2004; Yuill, 2012). These two aspects are telling because they represent a completely different form of inquiry to the sort of research prized by INVOLVE. They prize theory and political positions as prior to empirical work which itself takes a different form. A second domain is that of disability. Mike Oliver generated a ‘social model’ of disability which de-centres impairments such as sight loss or spina bifida and locates ‘disability’ in the social and built environment (Michael Oliver & Sapey, 1983). Again, in terms of research, new steps were taken. Not only should empirical research amplify the voice of the disabled person, and usually be conducted by disabled people themselves, but research should aim to be empowering, both of specific participants and more widely. This idea was discussed in respect to mental health research by Peter Beresford and Jan Wallcraft early on (P Beresford & Wallcraft, 1997). Oliver’s first publication on the Social Model of Disability was prompted by a meeting with the famous sociologist Peter Townsend and his colleagues concerning independent living and desegregation generally for disabled people (Disability Alliance and UPIAS, 1975). The two organisations present—Townsend’s Disability Alliance and the campaign group Union of the Physically Impaired against Segregation—could not agree because the disabled people at the meeting found Townsend and the Disability Alliance unwilling to concede that desegregation should be a general principle for them. Townsend’s group thought disabled people could not cope with independent living. The Social Model of Disability went through many iterations and critiques, including with respect to methodologies (Shakespeare & Watson, 2001) and I have already referenced Chris Bell’s critique of the Whiteness of Disability Studies. Oliver himself revisited the concept and the debate 30 years after the first edition (Mike Oliver, 2013). He is quite disenchanted with the progress made, but independent living is now policy and

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disabled people have their own office at the UN Office for Citizen and Human Rights (UNOCHR). The model changed theoretical and empirical work, again towards more participatory research and introduced the idea of emancipatory research in this field. And again it had policy drivers and political roots. Like the first example of childbirth, research on disability preceded INVOLVE and saw empirical inquiry very differently. I am going to return to the comparison between mad knowledge and Disability Studies in the concluding chapter of the book. The third example is quite different in terms of research interventions and it concerns mostly young men living with AIDS in the USA at the beginning of the epidemic when there were no cures or procedures to slow progression and the disease was effectively a death sentence. Life expectancy after diagnosis in the early 1980s was one year. When the first potentially effective drug, AZT, was discovered in the year 1987, the process of trials and approvals, especially by the FDA, was set to take several years during which many would die. The way in which AIDS activists intervened to speed this up is described on the NIAID website (https:// www.niaid.nih.gov/diseases-­c onditions/antiretroviral-­d rug-­ development). The role of patients is acknowledged but, when compared to Epstein’s account, it is downplayed officially (Epstein, 2000). AZT became available in the early 1990s and antiretrovirals quickly followed. Conditions of exclusivity resulted in the impossibility of access in the Global South or for people in poverty, including racialised groups, and this has led to widespread political and medical campaigns. Indeed, class and race figured in who were the activists in these campaigns, led by middle-class white gay men and some celebrities. For our purposes, though, this is a different example of a marginalised group, intervening in the research process not to change or become ‘involved’ in the research itself but to hasten the process of research and approvals. And at the same time this was a campaign against discrimination of gay men and homophobia centred first on health care professionals then more widely (O’Hare et al., 1996). The existence of a movement—Gay Pride—made possible the campaign to bring effective medicines to market—that is, the market of rich countries in the Global North. Interestingly, the original Chair of the Consumers in NHS Support Group was Nick Partridge

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who was simultaneously CEO of the Terrence Higgins Trust, an organisation concerned with living with HIV. Finally, recipients of psychiatric services, our topic of interest which will be the main focus of the rest of the book and for which this chapter is background. Psychiatry has always been contentious for its recipients because doctors have the power to take away liberty and administer treatment without consent. That is, they can detain and treat involuntarily and this is enshrined in Mental Health Law in most countries although there are now nods to the protection of ‘rights’ (Freeman & Pathare, 2005). There have been Mental Health Acts in England since the eighteenth century and there have been protests too as well as the hidden stories referred to in Chap. 1. Hervey documents the rise of the Friends of the Alleged Lunatics Society in the late 1890s but asks the question: advocacy or folly (Hervey, 1986)? In other words, as they were mad, they are not to be quite believed. Epistemic Injustice is everywhere when it comes to mental patients apparently. Recent activity re-emerged in the early 1970s and now there is action in terms not only of psychiatrists but all the little ‘psys’ that surround them. But in terms of research and thinking, we see again a rise of user-controlled and collaborative research well before 1996 and the emergence of ‘official’ involvement. Some examples will serve to illustrate. A local activist group I belonged to in a part of London—Camden Mental Health Consortium—interviewed people who had experience both of the old asylums and new community provision and published a report in 1988 (Camden Consortium for Mental Health & Good Practices in Mental Health, 1988). In the days of counting murders, homelessness and jailed people as a supposed result of asylum closures this was novel (Muijen et  al., 1992). I am told it caused something of an outcry amongst those doing Randomised Controlled Trials on ‘community care’. “They talked to these people?”. This shows what we were up against at that point in time. How far has it changed? Viv Lindow, an activist researcher from the West of England, laid out her vision for the future in terms of psychiatric system survivors in 1993 (Lindow, 1993). Writing from personal experience of a group of people diagnosed with Eating Disorders, Louise Pembroke offered a different analysis in 1994 (Pembroke, 1994). In the USA, evaluation of the President’s decree that each state should have a consumer-controlled

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service took place in the 1980s (Clay, 2005). And in 1996, the very year Consumers in NHS Research was founded, two pieces of research were initiated by groups of service users working in NGOs (Faulkner & Layzell, 2000; Diana Rose, 2001). All this we shall return to but the pattern remains: these are situationally specific interventions in debates to do with the power of psychiatry and all the authors just referred to were activists. None of these pieces of work took place in a university but this was to change. And changing settings changes thought. Excluding certain groups does the same. The link with activism no longer works in the same way and this poses problems which I will address in the concluding chapter.

Conclusion This chapter has attempted to describe the ‘official history’ of public involvement in health research in England. It may be parochial but England is often held to be a model of involvement in research internationally. I have argued that this history can be interpreted differently when viewed from the perspective of researchers and others who have experience of certain health and social care services. The way language changed, the people included and excluded and the organisational changes that took place show that the picture of smooth evolution and growth is reductionist and too simple; it is not transparent about the ‘other sides’ of what was happening. In other words, INVOLVE became an object lesson in how not to do it. Which does not mean nothing good happened. In addition to these internal factors, there is an antidote to the idea that Consumers in NHS, INVOLVE and other spaces of user involvement and user-led research in England and beyond. It belies the claim that INVOLVE had a near-monopoly here, which is how it represents itself. That antidote lies in examples of thinking and research that pre-­ dated and/or stayed outside the remit of officialdom in England. And of course, there was such activity in places that I don’t know about, that remain invisible even to someone who has been around all this for 40 years. I suspect they shake up thinking more than their invisibility would indicate.

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Three examples of such thinking and research in addition to the work of psychiatric survivors, the topic of the present volume, show that there was a great deal of activity in England itself and beyond. Although diverse, the groups and collectives doing this work had one thing in common: they recognised, even actively promulgated, that theirs was a political struggle, a social justice struggle; that they were fighting action or inaction on the part of those who had an enormous degree of control over their lives and extremely negative representations of them as Other. Research was part of the struggle and it was no neutral endeavour, it was a form of activism. It is no neutral endeavour for any party but that is denied.

References Barnes, M., & Cotterell, P. (2011). Critical perspectives on user involvement. Bristol Policy Press. Bell, C. (2010). Is disability studies actually white disability studies? The Disability Studies Reader, 1, 374–382. Beresford, P. (2002). User involvement in research and evaluation: Liberation or regulation? Social Policy and Society, 1(2), 95–106. Beresford, P. (2020). PPI Or User Involvement: Taking stock from a service user perspective in the twenty first century. Research Involvement and Engagement, 6(1), 1–5. Beresford, P., & Wallcraft, J. (1997). Psychiatric system survivors and emancipatory research: Issues, overlaps and differences. In C.  Barnes & G.  Mercer (Eds.), Doing Disability Research (pp.  67–87). The Disability Press / University of Leeds. Brekhus, W. (1998). A sociology of the unmarked: Redirecting our focus. Sociological Theory, 16(1), 34–51. Brubaker, S. J., & Dillaway, H. E. (2009). Medicalization, natural childbirth and birthing experiences. Sociology Compass, 3(1), 31–48. Camden Consortium for Mental Health, & Good Practices in Mental Health. (1988). Treated Well?……. Good Practices in Mental Health. Carr, S., & Boote, J. (2019). Is patient and public involvement being privatised? BMJ, 366, l4520.

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Clay, S. (2005). On our own, together: Peer programs for people with mental illness. Vanderbilt University Press. Collins, P. H., & Bilge, S. (2020). Intersectionality. John Wiley & Sons. Corbett, J., d’Angelo, C., Gangitano, L., & Freeman, J. (2017). Future of Health. Retrieved from web only. Cornwall, A., & Coelho, V. S. (2007). Spaces for change?: The politics of citizen participation in new democratic arenas (Vol. 4). Zed Books. Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science & Medicine, 41(12), 1667–1676. Davis, K. (2007). The making of our bodies, ourselves: How feminism travels across borders. Duke University Press. Department of Health. (2012). No Health without Mental Health: Implementation Framework. HM Government. Disability Alliance & UPIAS, D. (1975). Fundamental Principles of Disability. Retrieved from London. Epstein, S. (2000). Democracy, Expertise, and AIDS Treatment Activism. Science, Technology and Democracy, 1, 3–32. Faulkner, A. (2010). Best Practice in User-Controlled Research (INVOLVE Case Study). Eastleigh. Faulkner, A., & Layzell, S. (2000). Strategies for living: A report of user-led research into people’s strategies for living with mental distress. Mental Health Foundation. Faulkner, A., Carr, S., Gould, D., Khisa, C., Hafford-Letchfield, T., Cohen, R., … Holley, J. (2019). ‘Dignity and respect’: An example of service user leadership and co-production in mental health research. Health Expectations. Frankenberg, R. (2001). The mirage of an unmarked whiteness. The making and unmaking of whiteness, 1, 75. Freeman, M., & Pathare, S. (2005). WHO resource book on mental health, human rights and legislation. World Health Organization. Freire, P. (1996). Pedagogy of the oppressed (revised). Continuum. Harding, S. (2004). Introduction: Standpoint Theory as a Site of Political, Philosophic, and Scientific Debate. In S.  Harding (Ed.), The Feminist Standpoint Theory Reader: Intellectual and Political Controversies (pp. 1–16). Routledge. Hervey, N. (1986). Advocacy or folly: The alleged Lunatics’ Friend Society, 1845–63. Medical History, 30(3), 245–275. INVOLVE. (2015). Going the Extra Mile. INVOLVE / NIHR. Ives, J., Damery, S., & Redwod, S. (2012). PPI, paradoxes and Plato: who’s sailing the ship? Journal of medical ethics, medethics-2011-100150.

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Kalathil, J. (2008). Dancing to our own tunes: Reassessing black and minority ethnic mental health service user involvement. London, UK: National Survivor User Network in collaboration with Catch-a-Fiya, 5, 2009. Lindow, V. (1993). A vision for the future. In P. Beresford & T. Harding (Eds.), A Challenge to Change: Practical experiences of building user-led services (pp. 182–191). National Institute for Social Work. Lukes, S. (2004). Power: A radical view. Macmillan International Higher Education. Maguire, K., & Britten, N. (2018). ‘You’re there because you are unprofessional’: Patient and public involvement as liminal knowledge spaces. Sociology of Health & Illness, 40(3), 463–477. Moyzakitis, W. (2004). Exploring women’s descriptions of distress and/or trauma in childbirth from a feminist perspective. Evidence-Based Midwifery, 2(1), 8–15. Muijen, M., Marks, I., Connolly, J., & Audini, B. (1992). Home based care and standard hospital care for patients with severe mental illness: A randomised controlled trial. BMJ, 304(6829), 749–754. Norsigian, J., Diskin, V., Doress-Worters, P., Pincus, J., Sanford, W., & Swenson, N. (1999). The Boston women’s health book collective and Our Bodies, Ourselves: A brief history and reflection. Journal-American Medical Womens Association, 54, 35–36. O’Brien, D., Butler, M. M., & Casey, M. (2017). A participatory action research study exploring women’s understandings of the concept of informed choice during pregnancy and childbirth in Ireland. Midwifery, 46, 1–7. O’Hare, T., Williams, C. L., & Ezoviski, A. (1996). Fear of AIDS and homophobia: Implications for direct practice and advocacy. Social Work, 41(1), 51–58. Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. Oliver, M., & Sapey, B. (1983). The Social Model of Disability. Patterson, S., Trite, J., & Weaver, T. (2014). Activity and views of service users involved in mental health research: UK survey. The British Journal of Psychiatry, 205(1), 68–75. Peck, E. (1998). Integrity, ambiguity or duplicity? NHS consultation with the public. Health Services Management Research, 11(4), 201–210. Pembroke, L.  R. (1994). Eating Distress: Perspectives from personal experience. Survivors Speak Out London. Rose, D. (2001). Users’ voices: The perspectives of mental health service users on community and hospital care. Sainsbury Centre for Mental Health.

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Rose, D. (2003). Collaborative research between users and professionals: Peaks and pitfalls. Psychiatric Bulletin, 27(11), 404–406. https://doi.org/10.1192/ pb.27.11.404 Rose, D. (2004). Telling Different Stories: User invovlement in mental health research. Research and Policy Planning, 22(2), 23–30. Rose, D. (2015). The contemporary state of service-user-led research. The lancet. Psychiatry, 2(11), 959–960. Rose, D. (2017). Service user/survivor-led research in mental health: epistemological possibilities. Disability & Society, 32(6), 773–789. https://doi.org/10. 1080/09687599.2017.1320270 Rose, D., Barnes, M., Crawford, M., Omeni, E., MacDonald, D., & Wilson, A. (2014). How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms? The ENSUE study. Health Services and Delivery Research, 2(10), 1. Shakespeare, T., & Watson, N. (2001). The social model of disability: An outdated ideology? Exploring theories and expanding methodologies: Where we are and where we need to go, 2, 9–28. Staley, K. (2009). Exploring impact: Public involvement in NHS, public health and social care research. Retrieved from London: Staley, K. (2013). There is no paradox with PPI in NIHR research. Journal of Medical Ethics, 39(3), 186–187. Still, A., & Velody, I. (1992). Introduction. In A.  Still & I.  Velody (Eds.), Rewriting the History of Madness: Studies in Foucault’s Histoire de la Folie (pp. 1–16). Routledge. Turner, M., & Beresford, P. (2005). User Controlled Research: Its Meanings and Potential: Report Summary. Retrieved from Eastleigh. Wallcraft, J. (2013). Comment. Mental Health Today. INVOLVE Wandel, T. (2001). The power of discourse: Michel Foucault and critical theory. Journal for Cultural Research, 5(3), 368–382. Williams, O., Sarre, S., Papoulias, S.  C., Knowles, S., Robert, G., Beresford, P., … Palmer, V. J. (2020). Lost in the shadows: Reflections on the dark side of co-production. Health Research Policy and Systems, 18, 1–10. Yuill, O. (2012). Feminism as a theoretical perspective for research in midwifery. British Journal of Midwifery, 20(1), 36–40.

4 Research and Practice or What About the Wild?

The Problems Starting this chapter, the question seemed obvious and straightforward. Impact. If PPI is meaningfully included in a project, then will the outcomes of this project be more beneficial to the persons concerned than if PPI had not been introduced? There is a distinction to be made between studies that look ‘inward’—what difference did PPI make to the research team—and those that look ‘outward’—did PPI make a difference in the ‘real world’ once the study was disseminated. These are frequently muddled. But even such a bland statement about the impact of PPI contains numerous thorns. For example, from the last chapter we saw that what ‘PPI’, particularly ‘meaningful PPI’, consisted of was neither stable nor uncontentious. Mental health service user involvement in research had the added factor of contention rooted in but not defined by legal authorisation for detention and compulsory treatment in practice. To ask about ‘outcomes’ being beneficial raises the question of ‘what is an outcome’ and ‘who benefits’ as well as how benefit is assessed. We shall see that these are difficult issues and yet in health service research they are © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_4

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presented as simple. And this is important and goes far beyond PPI.  Literature and informal discussions repeat that ‘Evidence-based Medicine (EbM)’ is what we should aim for. The start of the Summary that opens this chapter is a test of whether practice based on evidence improves health and care when the public have a role (Sackett & Rosenberg, 1995)? There is the added factor that there has always been conceptual and practical work by survivors that lies way outside the parameters of PPI, however conceived (Beresford & Wallcraft, 1997; McWade et al., 2015). So when I ask whether PPI did what it is/was supposed to do in relation to impact, there are major differences in what counts as PPI. Sometimes undefined altogether, PPI certainly has no singular definition. This is a profound problem as I shall explain at a superficial level there should be no difficulty. These points are relevant to most research in health services and I will pick them up again in the next chapter. The second issue is that looking for ‘impact’ in the world of PPI appears to be disconnected from any other enquiry about how knowledge is shaped by ‘the public’ or contributed to by them. There is a body of work concerned with the relation between knowledge and society—ostensibly the same terrain as PPI—but its formulation, dissemination and development are conceptualised completely differently (Filipe et  al., 2017; Madden & Speed, 2017). That these two discourses are apparently making arguments in the same arena yet they never refer to one another is disturbing (Rabeharisoa & Callon, 1998). This work comes under the umbrella of ‘Science and Technology Studies’ (STS). Thus, although this chapter ‘hangs on’ PPI, the arguments are much broader because it is not only in the field of user engagement in research or user-led research that these two discourses fly past each other. In addition, the STS literature is primarily French so we are going beyond England although the arguments are generally applicable, insofar as arguments can be (Latour, 1987, 1998). They are applicable to survivor research too but in a different way. Still, for reasons given in the Preface, there will still be a UK focus to what I write. Importantly, bringing in more conceptual questions opens the chapter out to an analysis of the constraints that mainstream research puts on knowledge and its generation—constraints important to be aware of so that we learn from them (Diana Rose, 2017).

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Scope To include all possible elements and configurations of this debate would be an impossible task. I shall therefore proceed by addressing the original question on Impact and then compare user involvement in research and where it sits in configurations of knowledge with another approach also concerned with public involvement in knowledge-making. Evidence-­ based Medicine is the research context where PPI generally sits more comfortably but as an add-on; the second is Science and Technology Studies (STS) which stems from critiques of early formulations of ‘Public Understanding of Science’ where the ‘lay’ person is pictured as an empty vessel waiting to be filled with scientific facts. Some specific research projects and models will be described but for their novelty rather than as representative studies.

Impact: The Beginning So, what does this central reference to ‘Impact’ mean for PPI and other research for survivors? Simply put: what has been the ‘impact’ of user involvement in research and in practice? This term has many meanings in the academic world, most notably in respect to publications—‘high impact’ journals, and ‘impact’ measured by the number of times an academic paper is cited by another academic paper. But the specific meaning here was established by the Head of Research and Development in the NHS, Dame Sally Davies, in 2008. It was consistent with her belief that lay involvement would make research more relevant because persons with a specific health condition would have special knowledge of what is significant in living with it. At the same time, that special knowledge would be of great help in implementing the findings of research to the benefit of patients. Telling a success story instils hope, it is said. Her concern, then, was with ‘impact’ in the real world of health care and the likelihood that there would be improvement when user involvement was a meaningful element (Staley, 2009). However, even at this stage there was an ambivalence. Was the role of experience to be ‘transformed’ into the language of

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research, or was it present as a distinct non-conventional research discourse? These two questions, again, were muddled. The second issue, which has been dealt with at some length already will continue to be woven throughout this chapter and then discussed separately, is where do psychiatric system survivors sit in this world of PPI in research and beyond—both beyond PPI and beyond research? I will also develop the question: what kinds of people are involved in research both contemporarily and historically?

 he Question of ‘Impact’ T in Involvement Activities Consequent on Dame Sally’s intervention, there were a flurry of systematic reviews centred on this question of ‘impact’ (Brett et al., 2014; Evans et al., 2014; Marshall et al., 2006; Staniszewska et al., 2011). The conclusions were very ambivalent although various ‘models’ were proposed. Inevitably, there were papers which asked the question of whether the impact of PPI could be evaluated at all, centring around the argument that it was not an ‘intervention’ such as a medicine or psychological treatment (Barber et al., 2012) as well as those which called for detail rather than vague statements (Staley et al., 2014). As can be seen, these reviews span a range of dates but multiply after Dame Sally’s intervention in 2008. There is much more to be said but let us pause here. I read the bibliographies of the first set of papers referenced above looking at author names, asking the question: how does mental health figure here? And the answer is that it was absent—1% of the papers cited were written by mental health service user researchers as far as I could tell. Numbers are proxies but it is not helpful to ignore them. The main exemplar categories were cancer, various long-term conditions and maternity. And most of the authors were clinicians or researchers. One study did have a good proportion of mental health authors, where the influence of collaboration between clinicians and users on deciding research questions was reviewed (Stewart et al., 2011). But when examining these studies more closely it was found that over 70% of the topics in mental health chosen as

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priorities for research had been decided by clinicians not survivors or members of NGOs. Topic choice has emerged as significant in this field, but here we find that ‘collaboration’ swings predominantly to clinicians when these choices are made. Numbers hardly tell a story but an absence is worth pondering. This is especially the case because mental health research in the NHS had its own infrastructure—the Mental Health Research Network (MHRN) which, on the face of it, promoted PPI in this field. The studies looked at by Stewart et al. (op cit) also aligned with the MHRN ethos. Other medical conditions had similar ‘Networks’, but none made PPI a condition of being under their remit. The importance of these infrastructural bodies was in large part financial because a project accepted onto their portfolio would get a great deal of help with ‘recruitment’, with getting subjects/ participants to take part in the study. The MHRN existed between 2006 and 2014 when it was finally closed despite an intensive struggle led by its Director, Dame Til Wykes. It was not without its own form of power and the first central service user team had a difficult time, well documented by one of the members (Wallcraft, 2008). First-hand accounts of being a service user researcher in such non-user-controlled space are sparse but I will try to include this here. Mirroring INVOLVE but even more tightly, the MHRN comprised a hierarchical structure which clashed with the democratic tendencies of many mental health users generally. It might even be said that ‘user involvement’ functioned as a badge of being welcoming to users but only to maintain its own structures and processes—what Harrison and Mort called a ‘technology of legitimation’ prior to the advent of INVOLVE (Harrison & Mort, 1998). That madness is missing from the peer-reviewed systematic and narrative syntheses of the ‘impact’ of PPI does not mean there was no activity and no research. I am not at all implying that this was a deliberate silencing, but it was a silencing nonetheless, routine. Recipients of psychiatry were not alone here—physical disability was rarely mentioned and the literature engaged with is almost unremittingly white. It is of note, I think, that mental health, physical disability and research by Black and Brown people are accompanied by, or even arose from, political movements that were opposed to some parts of the mainstream, psychiatric and beyond. In terms of mental health, I traced the history of activism

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and its relation to research in Chap. 1. There the issue of silencing was prominent so this (non)-figuration of mental health in the academic and non-academic review literature is not surprising. This does not, however, reflect of an absence of work. In mental health, specifically relating to impact, there were incisive writings but they were criticised on ‘quality’ (Barber et al., 2011; Walsh & Boyle, 2009). The criteria by which a study or programme comes to be deemed ‘high quality’ has already been touched on in terms of method and will be again (Wykes et al., 2015). Dealing with the incursion of survivor knowledge in mental health, an easy strategy is to resort to diagnostic categories, informal medical slang or to some version of deficits, in this case cognitive (Carver et al., 2017). By ‘easy’ I am not referring to the content of a particular project. I mean it as so deeply embedded in the culture of some organisations that the work is done routinely and when someone breaks the rules the reflex is to understand the individual rule-breather as at fault, not the organisation. Tate refers to this as ‘epistemic marginalisation’ (Tate, 2019). This is not a favourable set of circumstances in which to examine the ‘impact’ of user involvement in research. Indeed, is it the right question?

 hat Is Meant by the Term ‘Impact’? W Two Approaches Before addressing further where madness is in relation to this terrain, it is worth revisiting what is meant by ‘impact’ here. The reviews on impact referenced above do not engage with any other literature in this field apart from showing a tendency towards ‘realist evaluation’ (Evans et al., 2014; Pawson & Tilley, 1997). This is often described as a process for research and the three basic terms and phases are context-mechanism-­ outcome. The difficulty here is that the ‘context’ is nearly always underspecified. This repeats what I said in Chap. 2 about the clinical encounter. I will argue later that this is a real drawback because an intervention/ mechanism does not happen in a vacuum and without a clear specification of the ‘context’ the mechanism or intervention is completely ungrounded. As I said, it is a common word in the literature but is almost an ‘empty signifier’.

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There are other approaches concerned with lay and scientific knowledge but they are framed in such a radically different way, that at first sight they appear to have nothing to do with each other. The other literature I will draw on here is Science and Technology Studies (or STS for short). This literature does not use the language of user involvement in research, but it does pay a great deal of attention to what I am calling ‘context’—the context in which the study takes place as well as the context in which it is received.

Evidence-Based Medicine (EbM) The first model I shall query stems from fields of argument such as the ‘effectiveness/effectivity’ debate; ‘translational science’; ‘bench to bedside’ and associated specific models such as the ‘translational pipeline’ (Brown et al., 2017). Recent times have seen the rise of ‘implementation science’ to try to refine the problem (Collins, 2011; E. K. Proctor et al., 2009; Spencer et al., 2005). In one respect these approaches are all grappling with the same thing, although it is rarely named: that is, how to make interventions that are ‘significant’ under research conditions ‘work’ in the real? What are the barriers and what the facilitators to identify and ameliorate or augment new ideas so that work gets taken up or else disappears, is co-opted or is assimilated to another discourse, sometimes completely inappropriately? How, in other words, do we make the leap from the lab to the wild? What needs emphasis here is that this problem has not been solved. It has not been solved and yet evidence-based medicine, which is what many clinicians aspire to, requires such a solution. Evidence-based medicine requires a pathway from evidence into practice but currently this is like looking for the end of the rainbow. At least, it has been estimated that it will take at least 17 years for a piece of research to be ‘translated into practice’ (Morris et al., 2011). Morris and colleagues derived this figure by looking at 12 papers but they are very critical of the literature they examine. Many studies relied on statistical analysis and

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bibliometrics (number of times a paper is cited by other authors)1 and this conceals a great deal. For instance, Morris et al. state that this 17-year estimate is an average and so hides a great deal of variation even within the set of studies they reviewed which was based on small samples and were mostly of poor quality. There is not even a consistent definition of ‘impact’ across the papers. They reviewed a kind of potpourri from high citations of articles to changing urban architecture. So, when Dame Sally Davies asks the PPI field to show evidence of ‘impact’, she is asking for a form of evidence that barely exists in any field related to health research, or if it does it will take 17 years at least for that impact to show. PPI has existed in earnest for about 13 years so even if this is a sensible question, it would seem very premature to expect an answer. And yet, the reviews cited above seem unaware of this controversy around the ‘translational gaps’, unaware that they have effectively been given an impossible task. There is consensus that there are ‘gaps’, ‘obstacles’ and facilitators of course but this consensus does not extend to questioning the research framework itself. Why this meta-knowledge is missing is developed in Chap. 8. In this model, PPI is generally situated as a possible way of improving the leap from the lab to the wild (this is my language, not theirs). If the public, or service users, had more say in topic-identification or data collection and analysis, then the translational problem would be ameliorated. PPI as handmaiden to Evidence-based Medicine. Positioning it this way is a form of power by which PPI, user research generally, is always in second place. This is not a new idea but emerged in a different context many years ago (Arnstein, 1969).

 To a non-academic this may seem very odd. Why should the number of times an article is cited by others tell you anything about its importance? The ‘missing link’ is that number of citations is taken as a marker of ‘quality’. Given that groups get together to cite each other’s articles, this is questionable on those grounds alone. But careers do hang on this. 1

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Science and Technology Studies Yet there is another literature which tackles this question of ‘research— into—practice’ but frames it completely differently. This is the field of Science and Technology Studies (STS) which partially came into being as an antidote to the traditional notion of ‘Public Understanding of Science’ which envisions the public as an ‘empty vessel’ waiting to be filled with the truths of science, a veritable pedagogic task (Stilgoe et al., 2014). It is the ‘emptiness’ of the public mind that needs rectifying conceptually here. A landmark study was Latour and Woolgar’s book, Laboratory Life, first published in 1976 and going through several editions since (Latour & Woolgar, 2013). Also important is Shapin’s work on the history of the physical sciences, precisely because these supposedly deal with ‘hard facts’ (Shapin & Fuller, 2015). Latour and Woolgar’s study demonstrated that the way biological knowledge was created in the lab did not follow the routine protocols of research but rather incorporated human, relational and mundane tasks such that ‘the science question’ itself changed. This informal, messy and routinely present arrangement was part of ‘everyday life’ in the lab. It did not happen ‘outside of ’ or ‘in addition to’ the scientific procedures; it was part and parcel of the generation of knowledge. Interactions between people or between groups were found to be highly influential on the actual arguments produced. These interactions could be validating or divisive, short or protracted and often situated apart from the formal Team Meeting where ‘decisions’ were made, yet they bore on those decisions. These could not be explained in wholly logical terms and the ‘excess’ could radically alter the nature of the work that was done. People did not talk about work all the time; the effects of hierarchy and power were evident in many ways; the competition to prove something ‘first’ or be the first to publish a particular finding was an unremarkable aspect of lab life and it shaped knowledge itself. In other words, lab culture nested within the wider culture was responsible for what counted as a ‘fact’ and how it was articulated. This is not a description of ‘time out’ for informal chats or the addition of comfy sofas and mindfulness. These activities and representations were part of biological science itself, often tacit.

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For our purposes, there are two important findings of this ethnography. First, is that ‘facts’ in science cannot be assumed to be replications of reality, far from it. They are constructed in many ways. Without touching the realist/constructivist dilemma, I made use of this approach to show how ‘facts’ in the form of statistically significant results in health research arise from many tributaries which at every stage deviate from the ‘ideal method’ which science is meant to follow. This was research in which I myself was involved (Diana Rose, 2019). Being positioned as both ‘insider’ (a researcher) and ‘outsider’ (having a psychiatric diagnosis), I was able to use this double identity to both understand and participate in the research but also to stand back and see the discrepancy between the research process itself, messy, contingent, argumentative and yet oddly sociable, and the smooth, logical unfolding that the resultant academic papers both supposed and proposed. (The exemplar here has a twist. I refer not to one single piece of work or even a programme of such. The ‘example’ is not singular. It is in effect in fact a composite of what I have witnessed over the years.) Social relations, including power relations, impact knowledge. This is something that user researchers know in detail and I will return to. Impact is not a one-way street. So, the question of impact is much more complex once one begins to problematise the findings of research themselves—the evidence. In addition, various institutional and structural factors are at play: peer review, university rankings, societies of whatever discipline, the fact that we have disciplines at all, the divide between academia and work outside it, such institutional structures all impact what counts as valid knowledge. This is not an accusation that scientists are lying or making things up, but it does explode linchpin ideas such as neutrality, naive empiricism, universality, generalisability and validity as hallmarks of science instantiated in the ‘universal scientist’, a set of processes labelled by Donna Haraway as the ‘God Trick’ (Haraway, 1988). The second pertinent point is that Science and Technology Studies uses none of the terminology of ‘translation’, ‘scaling up’ or ‘implementation’. It further recognises that science is fundamentally social and that knowledge is both replete with values and not exclusive to the academy, that it is situation specific. This is a controversial reading and the terrain is not homogenous. For instance, Latour now holds fast to a strong

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concept of ‘expertise’ as central to the newer brands of STS (Caudill, 2020). He also makes bold claims about connections with activism (Sismondo, 2008). But there is another tendency commonly called ‘science in action’. Michel Callon’s work looks at the how and why of citizen participation in questions such as the citing of nuclear energy plants or the politics of genetically modified crops, and argues that in these fields science is only one player amongst many when issues are up for debate (Callon, 2009). Callon has looked at health as well, doing a lot of work with the NGO Association Francais Dystrophies (AFD) looking at the links between ‘pure science’ and the contribution of AFD to knowledge and practices in the field of muscular dystrophy and associated patient and carer organisations. This long piece of work led Callon and associate Rabehaisoa to the conclusion that there were two types of research— ‘research in the lab’ and ‘research in the wild’—and accorded these two fields equal epistemic value (Rabeharisoa & Callon, 1998). They argue that knowledge cannot be monolithic and many different tributaries are needed to develop (or regress) knowledge in the Muscular Dystrophy field. Equally, they proceeded to apply this thinking to other aspects of ‘research in the wild’ (Rabeharisoa & Callon, 1998). Maybe we should be using methods which start with ‘the wild’; some forms of ethnography and participatory action research, for example. The strict line between ‘research’ and ‘impact’ dissolves to be replaced with a different kind of rigour, a grounded one. An interesting example in terms of a community living in poverty, on the margins, is Brian Wynne’s study of fell sheep farmers in Cumbria when the Chernobyl spill happened (Wynne, 1992). He shows in detail how the farmers ‘received’ the knowledge of scientists in terms of their own knowledge of the land, the soil, the movement of sheep as well as making political connections between Chernobyl and a possible ‘cover­up’ at nearby Sellafield Nuclear Plant. The detail is interesting but the point is that Wynne shows how the famers’ understanding of the situation was far from based on ignorance and that they re-framed scientific knowledge in terms of their own local knowledge and values. And some of it they just ignored. So, the idea of ‘translation’ is just far too simple when the question is how scientific knowledge is ‘understood’ or represented by ‘lay’ people. Or even by clinicians who after all have their own

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culture and local knowledge, even though they are the primary targets for the ‘implementation’ of health research. The more general observation made by Wynne is that health researchers and others try to impose their version of how ‘the public’ thinks upon that very public and finds them always wanting and science always authoritative. Science is not just Haraway’s ‘tricky God’ but an ‘arrogant’ one too. That mentally distressed people are not supposed to be able to think at once raises interesting questions and gives a reason for the absence in the field I have noted so frequently. On the whole, when STS refers to activism and civic epistemologies, it is largely high-level stakeholders they have in mind. The framing of how to democratise and spread knowledge as well as shape it is there, but mostly engaging powerful actors. That said, even with its obeisance to the elite, STS is completely different to the ideas of translation and implementation that the field of evidence-based medicine relies on and where PPI, specifically, has found a home.

Survivor Research and Change We can see some of this working in the field of survivor and collaborative research and how it limits what can be said and what can change. Constraints imposed by editorial decisions about acceptable methods are part of the story generally, but in our field research by service users is an especially contentious terrain. First, for many, it is unashamedly political in many ways but especially in its links to survivor movements. This may be less so today but the political here belongs also to normative cultural representations of service users themselves as unpredictable and incapable of rational thought. This imposed inability to speak credibly about yourself or a group is an overarching theme for this analysis—sometimes weak and sometimes strong. And it is in this field that ‘epistemic injustice’ most acutely finds its place. Because any analysis advanced by service users can be dismissed as ‘ignorant’, ‘uninformed’ and essentially not capable of occupying the position of people creating knowledge (Tyrer, 2002). Indeed, the title of this book is a potential oxymoron. The circle

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is a vicious one—deemed individually as pathological, the new understanding and reasonings produced by survivors are reflected back as pathological too. Patients don’t say what they mean because everything they say is doubted and written off as verging on nonsense. Only professionals can decipher the code (which survivors cannot have access to), and so arises epistemic injustice as foundational (Kurs & Grinshpoon, 2018) (Fricker, 2007). I do not mean that this complex form of power is ubiquitous or that every service user researcher is subject to it. However, the further you go from the ‘mainstream’, the more likely are these reactions to occur. It is structural as innovation is stifled and change minimal. At the same time, we saw in Chap. 2 how knowledge developed collectively by survivors changed radically when appropriated by academic structures. The examples were ‘recovery’ and ‘peer workers’ (Deegan, 1988; Lloyd-Evans et al., 2014; Mead et al., 2013; Slade, 2009).

The Fundamental Difference The differences between these two approaches lie partly in the belief by ‘evidence into practice’ advocates that one day the riddle of the pipeline will be cracked and evidence will find itself, unsullied at the bedside. But for STS thinkers the notion of ‘pure evidence or science’ is a flawed idea at best. Evidence does not exist in a vacuum. The public are not empty vessels waiting to be filled with the facts of science. Science disseminated will be received in myriad ways, some will fade away and some will gain but not for purely scientific reasons. They will be taken up and developed or disappear completely not because of ontological veridicality but because groups of various specialisms and powers will interpret the scientific ‘evidence’ according to their own material and symbolic framings which are closely tied to the social relations that cement them. So, perhaps looking for the ‘impact’ of PPI is both an impossible question, because evidence of impact is rare in the health field altogether, and one that is wrongly framed in the first place if it relies on a naïve idea of how science is ‘received’. A pipeline of production and a pipeline of consumption. But there are few bridges. Science in society sits in two discourses—Evidence-based Medicine and Science and Technology Studies.

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There appear to be no cross-overs which is a sad reflection of the notion of ‘interdisciplinarity’ (Kotter et al., 1999) The last few paragraphs may seem both a distraction and a counsel of despair. But if there is something wrong with the question and also where and how scientists are looking for the answer, this needs to be said constructively, so change can happen. It can be said more easily, I would argue, by a user researcher whose focus is always on the ground both in terms of their own research, the range of literatures that they find helpful as well as the activist and policy debates they engage with, founded on experience. We start ‘in the wild’ to understand people’s life positions and what constrains these to bring about a different kind of change. With this in mind, let’s return to the place of madness in the field of PPI, remain with the problematic idea of ‘impact’ to begin with and then go beyond this to the proposal that ‘user-led research and knowledge-­ making’ may be distinct from mainstream PPI. The reader may be wondering why I am still sometimes using this acronym—PPI. It is simply to engage with the literature whilst taking a distance from it. We will move soon to user engagement in research and user-led research.

Where Does Madness Sit in the PPI Terrain? There were systematic reviews of user involvement in mental health policy and research prior to the start of NIHR and INVOLVE’s repositioning as its ‘PPI Programme’ (see Chap. 3). The actual review questions were vague, for instance, whether user involvement in mental health was a ‘success’ but without specifying criteria for this. They rarely mentioned ‘impact’. Simpson and House reviewed five Randomised Controlled Trials and concluded that involvement did not not work. The disadvantages of involvement in this field, as ever, were eruptions of pathology, of ‘symptoms’. What counted as pathology was interesting as it included ‘anger’ as if, in the case of mental patients, anger was never, ever justified (Simpson & House, 2002). A further systematic review in the same year gave equally ambiguous results, although attitudes of managers were included in the ‘obstacles’ to meaningful involvement (Crawford et al.,

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2002). This was followed up by case study research by the same team and so gave much more detail. The analysis focused on user groups rather than individual authors and was more inclined to position policy makers or research leads as potential barriers to successful involvement and so departed from the mantra that user involvement is always difficult in mental health because the population at stake is itself difficult. The blame lies always with the ‘others’ and not with the robust and logical thinking and practice of those at the helm (Rutter et al., 2006). Interestingly one of the leads in this team was a service user researcher, so the research itself constituted a piece of ‘involvement’ in research—but this was not mentioned. A further obstacle commonly arose in these systematic reviews and this was ‘lack of research training’. As a ‘lack’ on the part of the public. That is, lack of training in research skills by ‘lay’ people who were then being asked to do things that were ‘difficult’. I shall return to this as the implication is that service users involved in research need only to learn the knowledge of the researchers they are working with and not that they have some distinct knowledge of their own or that researchers need to adapt their own methodologies, to at least accept that of survivors as valid. This is another way of putting the point of the distinction between learning traditional medical research skills and a wholly different way of representing what it is like to receive, or refuse, mental health services. A final, user-led review, again published in 2002, included many more studies, with an international slant, and examined the question of how service users themselves judged the success of their involvement in ‘change management’. This was a common phrase at the time and clearly touches on, but is not equivalent to, ‘impact’. This time the assessment of success was made by users/survivors themselves. One conclusion was that service users or survivors involved in policy decisions or in research were fundamentally in a Catch-22 trap. Although there were exceptions and some models of good practice, a recurring theme was that service users involved in research or policy were said to be too ‘articulate’ (or sometimes too ‘angry’) and therefore not ‘representative’ of ordinary service users, but at the same time ‘ordinary’ service users were ‘quiet’, did not speak out but were nonetheless content. Consequently, no one can speak and silencing appears in a new guise (Diana Rose et al., 2002).

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Back to ‘Impact’ We have seen that ‘impact’ is a slippery term, but there is one overriding concern, not specific to PPI or even mental health research in the ‘Health Sciences’. This concern is that an ‘intervention’ should confer greater benefit than ‘placebo’ or ‘treatment as usual’. That just about makes sense in terms of anaesthesia for surgery (though not ethically). The ‘intervention’—medication, CBT—counts as ‘better’ usually in a statistical sense, as a rise or drop in score in a rating scale. That is, there is only one primary outcome allowed, as said before. So, the question becomes, does PPI affect the statistical results in the main trial and then does it assist in the ‘translation’ into real-life improvements in health and social functioning for people living with certain health conditions and much more besides. PPI then becomes an ‘intervention’ subject to assessment in the laboratory in both form and across topics and whether this translates to better health and care for patients. This conceptualisation of PPI as intervention has been strongly put (Harris et al., 2016) Rather than pick apart all the things that are wrong with the above paragraph, let us think about what is missing. Even an RCT is more than the ‘intervention’ as many other things change when one of them singly does. I have even heard it said that people enrolled in trials get better treatment in general than those who are not part of a research programme. You can’t partial out social relations. And the ‘trial’ has to be ‘controlled’— that is, the samples (people) subject to the experiment must be as ‘pure’ as possible with only a single diagnosis and no multimorbidities; of working age, evenly distributed in terms of income, the right proportion of Black and Brown people, and so on. This does not take place by ‘matching’ the subject and placebo groups because that would introduce ‘bias’. The pure and neutral design is accomplished by random sampling. But it is not pure and neutral because there are so many exclusion clauses. We could get very bound up with minutia here and on occasion will. But one aspect deserves its own gaze. If my arguments are valid, then there appears to be a yawning gap between these ‘controlled’ conditions and people’s everyday lives. The social conditions that produce or alleviate health (and many more) conditions have been very thoroughly

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studied (Marmot, 2020). An ‘intervention’ has to fit with financial hardship, poor housing, terrible transport and inadequate schooling. These conditions, in recognition they may have some bearing, are often referred to as the ‘context’ as I detailed in Chap. 2. My argument will be the reverse, they are the driving force for good or poor health, (and life) not some black-boxed ‘context’ (De Souza, 2013). Stuck as we are in the individualist ontology of Western thinking, only the individual is the site of knowledge and of interventions. That they may be poor or wealthy, Black or white, in poor housing or living in a mansion, urban or rural, from a diasporic community or bearers of other parts of the neo-colonial legacies. These are assumed to be taken care of by random sampling and if they have a place, they are ‘corollaries’ of the central figure, the illness. You might just fit it them as secondary variables in a regression equation but only once the ‘primary outcome’ has taken centre stage and has had its ‘R’ value calculated. Thus do the arguments about individuation covered in Chap. 2 find their parallel in research. In plain terms, the ‘context’ can only be secondary because of the statistical requirements of the trial. But social life is not structured like a regression equation! The second thing obliterated by the focus on ‘hard outcomes’ is that they negate any attention to process, that is, to any interest in what is actually happening when research happens. If something is difficult to define, like PPI, is it not better to establish what happens rather than debate endless criteria for multiple proposed models? But the secondary status accorded to ‘process evaluations’ is a deeply embedded principle in research and evaluation—outcomes are more important than process, outcomes are what really count (E. Proctor et al., 2011; Sharma et al., 2014). And even when more ‘participatory’ research processes are used, the ultimate figure may remain the same—the ‘p’ value, the number (Sandoval et al., 2012). The ‘p’ value is almost a fetish. Many of the above arguments apply to any domain of health, social care, education, institutionalisation of any kind as well as home care. People do not live one-dimensional lives nor process information like computers. Schon (Kinsella, 2010) often used the metaphor of the ‘swamp’ to convey what happens to research findings should they reach the level of the wild. Modify some cells in a petri-dish (neurotransmitters will do), develop a medicine to recalibrate the offending molecule and

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prescribe it for some section of the population. But the population inhabits ‘swamps’—good and bad—spilling over with the realities of everyday life, the choice between food and medicines, the obstreperous child who refuses to do what they are told whilst witnessing adults doing the very same thing but more violently, the abusive partner, the hierarchy of access that mirrors many other hierarchies, an environment so hostile to refugees and others that they would not go near a doctor. And all of this is imbued with meanings and invitations and mostly promises that cannot be kept because, for example, structural violence is not subject to random sampling. Studies which take such factors seriously are rare because the focus is on the intervention and ‘context’ is relegated to the margins, as indicated earlier. At a more practical and medical level, studies have been conducted into the proportion of patients that fill the prescription they have been given by doctors. The results might be a cause for joy or it might be a testament to failure. Because the proportion of prescriptions written by doctors but not filled by the patient is astonishingly high. The high-level biochemical research is lacking in impact. The lowest rate of ‘adherence’ is for diabetes—only 38% of the prescriptions written by doctors related to insulin are filled by a pharmacist (Rolnick et al., 2013). The reasons are innumerable, but it is not the case that psychiatric patients are the worst culprits here, much as mythology would like it. I would propose that all this ‘context’ becomes the focus of research in many disciplines displacing the light shining on the ‘context-free’ individual. Contrary to the above, however, one might expect psychiatric patients to be less compliant just for the reasons mentioned—adverse social conditions, diagnostic terms that are always in dispute, shortage of psychiatrists, side effects of medication and, perhaps most important, that you can be treated against your will with a hospital order sometimes longer than a jail sentence. At the same time, psychiatric survivors sometimes ‘learn to play the rules’ and conceal their non-compliance in order to be free of these interventions (Katsakou et al., 2010). But we are talking about ‘tablets’. Most people with long-term psychiatric conditions do not just get medicine (some get nothing and are thankful but the reverse can happen too). They may have welfare advisers,

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visits from a professional, somewhere to go during the day (lunch is a bonus) and so on. And even these supports have eligibility ‘criteria’ you must meet to receive the service. And this brings us to the major issue here about ‘impact’ and ‘knowledge’. How can one score on a scale tell us anything about the ‘intervention’ that is being trialled, even in ‘pure’ conditions? These ‘interventions’ may control a person’s life or survivors may do everything they can to avoid any of it. They have priorities different to the doctors—threat of having children taken away, the leak from the boiler upstairs, the Team Manager you can’t stand, ‘living’ on £73 per week, scrutinised (Thomas, 2016). That cameo is an invention, of course. But, I submit, it is more like ‘real life’ than the ‘controlled conditions’ under which interventions are tested and then ‘rolled out’. In some cases, Schon’s metaphoric swamp is too close for comfort. The controlled conditions are controlled, and real life is, well, out of control. Who will measure their insulin levels at the correct time each day when there is all this ‘context’ to deal with? And because people with mental distress live under more such adverse conditions than most people do, they have more of these ‘extraneous variables’ to handle in the first place. The ‘intervention’ is often not a person’s first priority. And this is compounded when all the ‘therapeutic’ focus is on the individual and these correlates just get in the way. It is not surprising that the trial of ‘Recovery Practice’ found no difference between those who received the ‘treatment’ and those who did not, nobody asked the participants what they thought of it, they were reduced to filling in a questionnaire (Slade et al., 2015). Methodologically speaking, we need ethnographies, video diaries not RCTs to see when people thrive. I lapse for a moment into rhetoric I am aware. It is because this way of thinking and testing seems miniscule when we could be doing something about poverty, overworked social workers and supporting communities to be resilient, which most are should they be even seen. For the moment though, we do not really have a ‘definition’ of PPI in research, which is slightly problematic at one-third way through a book. But maybe there is no definition because the consensus is that it is not important, or it is too important, and so the mainstream is content for it to disintegrate.

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What Happens When PPI Happens? I hope I have been persuasive when I say that we do not know what PPI really amounts to nor how to evaluate its strengths and weaknesses, especially that part which hopes to assist the translation of evidence into practice. Who would be the intervention and control groups—PPI and no PPI? What would we measure—differences in local policy? The effects on the ‘lay’ person or on potential beneficiaries? Maybe PPI is so elastic that it cannot be defined? A better question might be to ask: what happens when PPI happens? And why? Since PPI comes in so many versions, it might be better to run several case studies and see what is going on—through the lenses of different actors. This ambiguity has been articulated: The coproduction of what? Asks Filipe and colleagues (Filipe et al., 2017); Beware Zombies and Unicorns counsels Madden and Speed (Madden & Speed, 2017), postulating that PPI is an ‘empty signifier’ that can mean practically anything; Moral imperative or radical standpoint? I asked myself (Diana Rose, 2014). And finally from the sociological literature there’s a potential answer: You’re there because you are unprofessional (Maguire & Britten, 2018). These last authors use the term ‘liminal’ to describe an identity for patient involved in such work. All these references could apply well beyond mental health and I shall give some examples. But I will argue that they have the most traction in the field of ‘mental health’, that it is a kind of sticking point with a fork in the road. First, and most basically, English empiricism does not explicitly deal with conceptual issues at all. Of course, they exist but this very fact of invisibility serves a purpose. The examples above are unusual in that they do deal in theory and concepts as well as in practice. Second, the uncertainty and double-takes in the titles of the papers selected signal the complexity and ambiguity of an unknown quantity—what is ‘mental health’ at all? Third, how many times have I heard the word ‘liminal’ in referring to service user researchers—the double identity; the outsider, within (West, 2020). The Borderliners. A liminal identity exists in or in between two spaces which do not align. It violates boundaries, it is not one thing or the other either, perpetual oscillations. Occupying a liminal

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space is both troubling and troublesome (Smith & Dowse, 2019). Fourth, the above references and allied writings have a strong relational quality in that they raise questions of dissent and consent between doctors and patients at the level of what the relationship is doing. With most medical conditions, at least in the West, patients and doctors more or less concur on what is a ‘good outcome’: survival and quality of life are the two priorities. There is less of a gulf between expertise and power in most medical practice—or there is a gulf but it is seen as justifiable and acceptable and there is some level of trust that the goal is the same for both researcher and patient. The examples I have just used do a disservice to the level of structural violence that goes on, that is in some sense the root of it (Rylko-­ Bauer & Farmer, 2016). Structural violence that is mostly hidden and especially if the patient is not a credible witness to their own experiences or those of others (Hookway, 2010). I do not hold somatic medicine up as a gold standard—there are many mistakes and patients are harmed as can be seen in work on ‘patient safety’. The current discourse around mental health is also bland when delving into such structures and experiences. We’re Not Mad We’re Angry was a film made for Channel Four in the early 1980s and is a self-conscious parody of the ‘typical’ and arrogant psychiatrist in his dealings with patients, individually and as groups. The point is that there is a tacit acceptance in most PPI work that ‘we are on the same side’, that we share values (in a value-free space!). This is not so for mental health, and it is not just a matter of the ‘angry patient’. It bears on the bodies of individuals, but it flows from structural violence. I do not, of course, mean that everyone in touch with mental health services shares these experiences or sees it this way but they live to a degree under their shadow. This was articulated in Chap. 1.

The Secret of Process Research and evaluations that look at process—what happens during a piece of research—are not valued highly. Statistics can be used for beneficial purposes although that initial purpose may become diluted. Not that statistics are always useless, far from it, but the overwhelming model of

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context-mechanism-outcome has become embedded nearly completely in elite spaces such that it is ‘obvious’ that ‘outcome’ is the primary concern. Public health specialists are better at this than clinicians (Plsek & Greenhalgh, 2001). It is the privileging of numbers that seems strange, given the little they can tell us. What does that mean? It means numbers are only as good as the categories they represent. It may not be obvious what the difference is between an ‘outcome’ and a ‘process’ study or whether they can be mixed or there are more models that don’t fit. Simply put, an ‘outcomes’ study (should) tell you what works, while a process study tells you why and how it works, if indeed it does.

Process Evaluations Many researchers have tried to measure and address the question of whether an intervention ameliorates a specified problem and I will try to clarify the difference between outcome and process studies with an example. It is important for the reproduction of knowledge because outcome studies have far greater status than process ones. English empiricism is the foundation of this. The study was called CRiMSON and the question was whether having a particular meeting reduced the incidence of involuntary treatment. The ‘intervention’ or meeting in this case revolved around a document called a ‘Joint Crisis Plan’ (JCP) (G.  Thornicroft et al., 2010). The JCP specifies what a person would like to happen or not to happen should they be in crisis. The primary outcome was a statistical comparison of rates of detention in the ensuing year between those who had and those who had not gone through the JCP process. The primary outcome is a digit although much more information was elicited than could be reduced to this. Half the patients were randomly allocated to draw up a JCP and the other half received some informational material, presumably seen as ‘neutral’. For the group allocated to have a JCP, a multi-disciplinary team was present at the meeting and the ‘client’ prepared a draft JCP in conjunction with an advocate/researcher beforehand. This study included 800 participants and the JCP meeting itself was chaired by a consultant

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psychiatrist. The study took place in four sites and there was user involvement, mostly doing qualitative work and training. I was part of it. The final analysis showed no difference in detention rates as between those who did and those who did not have a crisis plan (Graham Thornicroft et al., 2013). End of story. Except it was not the end of the story because the design had included focus groups with service users who had crisis plans and with their care co-ordinators (nurses or social workers). A few interviews were conducted with psychiatrists. What we found, in summary, was that the JCP meeting was not a separate space where service users could have their say, as it was supposed to be, but usually tacked on at the end of a routine clinical meeting. As a result, the majority of service users did not recognise the ‘meeting’ we referred to and many did not know they had a JCP. This held to a lesser extent for the keyworkers too (Farrelly et al., 2016). The formal way of putting this is that the ‘intervention’ was not properly ‘implemented’. Not properly implemented at the level of the trial. The focus groups and interviews and some patient notes were material for a ‘process evaluation’—what actually went on in the study. Perhaps this ‘process’ data could tell us why the intervention did not ‘work’. Some of this was administrative—the JCP meeting was supposed to be a separate exercise controlled by the service user. But most often, it was not, as I have said. The ‘manualised’ intervention was not followed, and in some ward offices, the relevant documents appeared unopened. Importantly, the psychiatrists were not willing to make time for a separate meeting where the service users, it was hoped, would have some say over their futures. Not much happens on a psychiatric ward and so in the focus groups people talked about other aspects of their lives too. For example, realising that people talked about you behind your back, separate toilets for staff and even separate coffee mugs. We wondered what these boundaries were supposed to signify. I had wondered that for a long time. There were long conversations conducted about a person with that person within earshot, other examples of lack of respect, brutal administration of sedative injections, lack of conversation, boredom and the absence of nurses to have a conversation with. None of this is new and I would argue that user researchers who have had an admission themselves add something very valuable to the work (Katsakou et al., 2012; D Rose et al., 2013).

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But in the CRiMSON study, this process evaluation was finally allocated a specific goal and that goal was to explain why the JCPs were ineffective. To explain why the intervention did not ‘work’ returns us to ‘context’—again. To be fair, there were participants who praised staff members and there are often, again, ‘little communities’ which bring some levity to the unremitting routines. Mobile phones are gold dust (this was 2007). But this exercise was called a ‘process evaluation’ because it told us what actually happened during the trial. It told us, in effect, that extraneous factors impinged on how the trial was supposed to run. However, positively, the process evaluation showed the conditions for the trial to be much better, especially the autonomy required for the service user and their assistant, the provision of a separate meeting that really was separate at all levels. Am I surprised these conditions were not met? Hardly, given the other arguments I have made. Process evaluations are not easy to do and even when the Medical Research Council (MRC) ‘allowed’ some qualitative work in evaluations they funded, this was always secondary to the RCT (Craig et al., 2008). Process evaluations are not encouraged as they may fall prey to ‘anecdote’ or ‘exaggeration’, values may creep in, people might have ‘emotional investments’ and the work lacks a systematic approach. And yet in the case of CRiMSON, it was the process evaluation that shed new light. It shed new light, one could argue, because it represented a specific solution to a problematic result. It ‘completed the narrative’ for a study on patients’ views of Advanced Directives in involuntary treatment. But its actual content was negative—the trial criteria were not met in the research sites. At most, the implication of such research invites researchers and clinicians to collect this kind of information and analyse it accordingly. But it is an offer, it is not mandated and the cynic would say that process evaluations will only see the light of day when they offer a solution to a question that was not anticipated. User involvement is a handmaiden to the central RCT. Very few projects have been funded where PPI itself was being evaluated or otherwise interrogated in the research. Five projects were funded under a specific initiative but none of them included mental health and all but one used the context-mechanism-outcome formula. The privileging of numbers is ubiquitous and it might be argued that such ‘hard data’ is essential to ensure that associations are established.

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This itself is risky but the whole analysis hangs on the validity of the categories through which information is collected in the first place. Some researchers in the field of mental health are extremely uncomfortable using, for example, diagnostic categories to collect information when these categories are constantly changing. And, conversely, society varies and changes such that now there are new problems of how to ‘place’ people in categories deriving, for example, from Socio-Economic Status (SES). The traditional SES categories based on capital and labour do not have a questionnaire (never mind a language) to assess the kinds of work that characterises the gig economy, those who earn goods and money under the radar of the State or who are neither in a category of ‘employed’ or ‘unemployed’, when so many are on in-work benefits. Those who cannot work for health reasons, and especially mental health reasons, represent their lives as an endless process of form-filling, face-to-face interviews and fear of means tested benefits such as PIP (Personal Independence Payments). Although these exercises often result in ‘numbers’, these cannot be a touchstone because nobody is asking what they ‘stand for’, or what they mean in a person’s life. These are standard critiques but valid nonetheless. They also take on a new dimension when discussed with people who live such lives. All of this is ‘context’ that explains something about a study, but it is most often overlooked when we start to discuss why a new treatment may not have the impact expected. And yet, the process evaluation discussed above enlightened why the trial did not have ‘Impact’—internal and external.

Going Beyond PPI There are process evaluations which use different concepts and approaches. They use advisory groups, ‘knowledge brokers’, interviews and observations to study what happens when PPI happens. They drill down to the level of everyday actions involving actors both individual and societal in order to ‘study up’ how user involvement can enhance or derail a study. Drawing on the skills of ethnography, they wish to know first what ‘PPI’ means when enacted, what proportion of time and whose time dominates the conversation, which voices get most time and on which topics

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and so on. This is superficially descriptive, but the underlying meanings and relations are laid bare. In one project, the ‘goal’ was to assess PPI but nested in a social and political context which could be geographical, could be identity-based or could reveal deeper signifiers of power (Barber et  al., 2011). This is a small example but the change in orientation is clear. A further study used one survivor researcher to assess a whole project team by attending all meetings and acting as a participant observer. This researcher kept a detailed diary (Gillard et al., 2010). The work of Barber and colleagues looked ‘prospectively’ at the embedding of user researchers in research teams (Barber et al., 2011). It deliberately set up a mixed team and asked participants to note their perceptions at each phase of the work. The team were able to see themes unfolding and then disappear again, the voices who spoke the loudest and with authority. They could see where dialogue figured or did not and how or whether embryonic mentions developed further. The important point is that they did not set out with a pre-formed structure or definition of user involvement/PPI but observed it in situ as it developed. Participants worked on the analysis too and had a role in dissemination, in how the work was represented. This kind of work has a much richer notion of context than, for example, asking participants to fill out a demographics form which allocates you to certain categories—age, gender, ethnicity and so on. This point is made not to advocate for dozens of small studies but to use such a project as a pointer about how things could be done differently. But the work inevitably examined the relationships between different participants, the power dynamics which took place, the very language that was used for and from different roles. And this is the final point. We cannot offer a singular definition of PPI but we can question who and which groups take part in these kind of activities. And we know something about the activities. For mental health there is the complex notion of identity—who does what and how in this field of involvement in research? Once they have met the eligibility criteria, of course. An alternative possibility, which I will return to, is that the ‘field’ diversifies and there is a definite space and discourse for ‘User-Led Research’. Quite how the narrative of everyday life can be integrated into a piece of research will be addressed in Chap. 7.

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Conclusion A simple question—that of impact—turns out to be very complex. What we used to call the ‘environment’ needs refiguring and re-centring. We cannot translate research findings into practice without a developed theory of settings and social influences rather than stripping a person or a group from the set of material and symbolic resources they live with and by. This is the case for both the research itself and attempts to change realities, the psychiatric encounter for one. These are some questions I will now delve into for the next few chapters. The next continues the relation between organisations and knowledge focusing on what I have called today’s ‘buzzword’: ‘coproduction’, specifically as it relates to work in mental distress. After that I deal with a concept that has been central to mental health survivor research and knowledge-making: ‘experience’. I have tried to show that work without conceptual principles, articulated from the perspective of marginalised groups, is meagre in what it can tell us. This brings me back to the points about critical theories made at the beginning. I will therefore devote time to that central concept—experience— its benefits and pitfalls. But it does not align with Sally Davies’ question which would be how the incorporation of experience in a study affects any ‘Impact’ it might have. The two discourses—experience and impact— do not partake of the same underlying principles, theoretical or methodological. The situation is not unlike that between Evidence-based Medicine and Science and Technology Studies. Two discourses ostensibly on the same terrain but actually miles apart and separated by power.

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Thomas, P. (2016). Psycho politics, neoliberal governmentality and austerity. Self & Society, 44(4), 382–393. Thornicroft, G., Farrelly, S., Birchwood, M., Marshall, M., Szmukler, G., Waheed, W., … Sutherby, K. (2010). CRIMSON [CRisis plan IMpact: Subjective and Objective coercion and eNgagement] Protocol: A randomised controlled trial of joint crisis plans to reduce compulsory treatment of people with psychosis. Trials, 11. https://doi.org/10.1186/1745-­6215-­11-­102 Thornicroft, G., Farrelly, S., Szmukler, G., Birchwood, M., Waheed, W., Flach, C., … Sutherby, K. (2013). Clinical outcomes of Joint Crisis Plans to reduce compulsory treatment for people with psychosis: A randomised controlled trial. The Lancet, 381(9878), 1634–1641. Tyrer, P. (2002). Commentary: Research into health services needs a new approach. The Psychiatrist, 26(11), 406–407. Wallcraft, J. (2008). Viewpoint. Mental Health Today. Walsh, J., & Boyle, J. (2009). Improving acute psychiatric hospital services according to inpatient experiences. A user-led piece of research as a means to empowerment. Issues in Mental Health Nursing, 30(1), 31–38. West, N. M. (2020). Another lesson from the outsider within: The transcendent relevance of black feminist thought. Journal of Student Affairs Research and Practice, 57(4), 371–385. Wykes, T., Haro, J. M., Belli, S. R., Obradors-Tarragó, C., Arango, C., Ayuso-­ Mateos, J. L., … Demotes-Mainard, J. (2015). Mental health research priorities for Europe. The Lancet Psychiatry, 2(11), 1036–1042. Wynne, B. (1992). Misunderstood misunderstanding: Social identities and public uptake of science. Public Understanding of Science, 1(3), 281–304.

5 Working with Others and ‘Coproduction’

Background Having spent time so far advocating for research that reflects what can loosely be called ‘the survivor perspective’, why not make a call to arms for the rapid development of such work? I do make such a call and develop this in the Conclusion. But realistically, everything from the overall political environment to those parts of it that are concerned with knowledge generation and practice to the embattled small groups outside the academy, all of these things are not conducive to such a ‘rapid’ development. Unless a philanthropist were to give ‘us’ billions of dollars, and we had a survivor super-accountant, we have to do our best to shift the current research paradigms around madness/mental illness and shift them to different degrees and in different ways. And this means working with other groups. Hence, this chapter explores this issue. I am emphatically not the first to do this, and will discuss the existing literature, but hope I have something to add. I shall begin by looking at some terms around ‘involvement’ which are currently circulating. These are not ‘definitions’ but approximations of types of work. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_5

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‘Involvement’ seems to act as an (ill-defined) umbrella term for some others that is or have been in use. We have covered much of this terrain already. Understanding (of science)—This is a historic term important for placing different forms of ‘involvement’. This was almost another word for ‘dissemination’ as in ‘public understanding of science’. The central idea was that the ‘public’ knew nothing about science and had to be educated like some kind of tabula rasa. Engagement—This notion of the public as an empty vessel was critiqued by the emergence of Science and Technology Studies (STS). In a word, they showed that all ‘science’ had social roots, and to understand the thinking, one needed to understand the organisation of those roots (Latour, 1999). So we can expect the demise of INVOLVE to impact knowledge involving service users—diminish it or free it up, who can tell? Focus groups, citizens’ juries and so forth were part of this movement (see https://sciencewise.org.uk). Partnership—today this is strongly associated with the James Lind Alliance and research topic priority setting in the UK.  The ‘Priority Partnership Groups’ comprise clinicians, NGOs and users (Hollis et al., 2018); I have already noted the review by Stewart and colleagues which showed that in the actual decisions about priority research topics, clinicians defined the topics 75% of the time. The Partnerships vary and there is a large literature discussing them, often specific examples (Stewart et al., 2011). There is also a programme of work called ‘PARTNERS2’ looking at people with diagnoses of psychosis in Primary Care which has several user advisory groups or ‘LEAPS’ (Lived Experience Advisory Groups) (Allen et al., 2020). They call ‘coproduction’ a form of ‘PPI’ and also use the term ‘involvement’. In fact, they manage to use all the terms I am exploring and more in one article without clearly defining or differentiating them. The chief organisation working on mental health in this way is called McPin. It is an NGO, and its strapline is ‘putting lived experience at the heart of research’. My first understanding of their approach was that they would be conducting a lot of user research. But in effect the strapline is also about participants and, although there is involvement of service users, their main purpose is to provide ‘partners’ for large projects, mostly those funded by the NIHR. This shows how

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‘partnership’ may be imbalanced and that imbalance glossed over. Power in other words. Collaboration—There are dozens of papers and reports that use this word. Some are general, for example, critical analyses of PPI, often using the idea without definition or just assuming that collaboration will follow the traditional cycle of research and the benefits and disadvantages at each stage (Jennings et al., 2018). Another example is a discussion from a group of nurses and service users on collaboration and its difficulties (Happell, Gordon, et al., 2019). Yet another paper is about how PPI can increase recruitment to trials (Ennis & Wykes, 2013). This paper is a review of submissions to the Mental Health Research Network (MHRN) which I have mentioned before. Already we can see the multiplicity of activities and ideas within specific terms as much as between them. Coproduction—this is the currently popular term and it will be explored in this chapter. It would be tempting to make a timeline that went from engagement to partnership to collaboration to coproduction with involvement figuring in all. But that would not be accurate, the terms co-existed and still do to a degree. One way of thinking about this is that each term was attempting to deal with the disparities in power between survivors and professionals where professionals should cede power but did not (Telford & Faulkner, 2004). Since each critiqued the others along these lines, we can assume that the question of ‘power’ however conceived is unresolved. It will not go away, however. Peter Beresford has looked at the socio-­ political context of this question, most recently in 2020 (Beresford, 2020). He distinguishes ‘technocratic’ and ‘democratic’ forms of involvement impacted by the more general political context, proximal and overarching. However, the distinction is vague as to power relations and seems to apply best to a comparison of ‘academic’ and ‘non-academic’ spaces and the power asymmetry I described right at the start of the book.

Does Everybody Agree? Chapter 3 tried to assemble an ‘unofficial’ history of ‘involvement’ in the UK, which functioned as a ‘model’ for other countries. I have argued that putting involvement into practice is not a technical matter although it is

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often seen as such. It relates to sense-making and meaning, to power and privilege and to who sets the agenda of what all this entails (Lukes, 2004). It is not self-evident that all players in the terrain have the same understanding of what ‘involvement’ is, what its purpose is and what the consequences should be. Williams et  al. have recently argued that it is self-evident that they don’t all agree, such that whose perspective dominates basically controls not just individual endeavours but the overall, be it variable, field of—involvement, engagement, collaboration, partnership and coproduction (O. Williams, Robert, et al., 2020). The multiple terms are my addition because the article by Williams et al. seeks simply to distinguish PPI and Coproduction. My addition of the multiplicity of terms is not a joke. Ambiguity can be productive; equally it can reinforce the status quo. It is in the interests of some for this to be so, I shall argue. Consensus in this field does not exist in the survivor community either and there have been calls for a diversity of thinking and opinion as well as identities/positions to increase ‘authentic engagement’ (Daya et  al., 2020). This has implications for what is meant by ‘experience’ as I will discuss in the next two chapters. It is central to survivor knowledge-­ making but has some problems because similar ‘experiences’ can be understood through different lenses or discourses. The relation between experience and its enactment in practice is not a one-way street.

Addressing the Field There are various ways to address this field, bearing in mind my emphasis in Chap. 1 that this ‘field’ is not stable. That much should be clear by now. However, we could approach it historically or in terms of dominant concerns. These are linked as the concerns have changed with time although the correlation is far from perfect. After explicating the links with the arguments so far, I propose to focus on the concept of ‘coproduction’. This is risky as the popularity of this term may just be a passing fad and the astonishing number of papers published in both the peer reviewed and ‘grey’ literature in the last few years may reduce to a trickle. However, the themes are of interest regardless of the name which, like all the others, can mean many things. I will focus on five articles or special

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issues of journals or reports which contain material on the history and principles of coproduction as concept and practice (Needham & Carr, 2009; Gordon & O’Brien, 2018; Roper et  al., 2018; New Economics Foundation, 2019; Miller & Wyborn, 2020). This is not to side-line other forms of, or terms for, ‘involvement’ but to use coproduction as a kind of reference point. I will then broaden out and discuss the ‘empirical’ coproduction literature and the body of sociological work that is emerging, some of which is consistent with critical theories but by no means all. This is more of a continuum than a binary. I will look at power from various angles. This entails acknowledging the gaps in the book, which I identified right at the start.

Relevant Themes This section recapitulates and introduces some dominant arguments in this space. First, what is the current terminology used by NIHR? It varies! Commonly we see ‘PPI/E’. One wonders what the ‘slash’ represents: involvement AND engagement; involvement OR engagement; they are the same thing? Also I have seen ‘PPICE’—Public and Patient Involvement and Community Engagement. There are other acronyms but they seem short-lived. The emphasis on community engagement is interesting and it could bring in work on participatory community research. But I see no movement in this direction from NIHR and perhaps the participatory researchers prefer their own company (Wallerstein & Duran, 2006). Interestingly, the literature here on community engagement and mental health is concentrated on the involvement or engagement of minoritised groups (King & Gillard, 2019). But the point is that not everyone, including those not among minoritised groups, wants NIHR’s version of involvement, loose though that is. I do not have to repeat the points already made about the multiplicity of terms that circulate in all these spaces making it impossible to distinguish between them or know what means what. Ambiguity is intrinsic and can be generative but I would argue that sometimes such fluidity is sustained in the interests of those who want to maintain the status quo (Diana Rose, 2017). Maintaining the status quo by building on

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ambiguity and so going round in circles that can’t be broken. Williams et al. (2020) put it like this: Often PPI networks, comprising patient and public contributors and healthcare professionals and/or researchers, lead to the latter holding sway over what kinds of contributions are considered legitimate and, ultimately, what constitutes ‘involvement’. (epub)

Another issue concerns the way knowledge is inseparable from the social and institutional relations in which it was generated. The way the academy reproduces itself and stifles innovation is an example. I described some of this in the last chapter. In addition, peer review, of papers and grant proposals, is central to individual and institutional reputation and much has been written about this, including from a racialised, feminist perspective (Todd, 2016). This includes pointing to the ways this maintains a particular, exclusionary, intellectual culture. The point has implications at an institutional level, most obviously it shapes the organisational forms of user involvement in research. This speaks also to ‘how’ survivor contributions to research can be validated and incorporated as well as being critical. We have met this dilemma already. At the start of the involvement era, there was often a move to have ‘lay persons’ on Steering Groups—from grant awarding bodies to specific projects. I have a lot of direct and indirect experience here and two service users, who only attend the meetings and do not have the advantage of ‘informal networks’ which others do, were nearly always drowned out. Unsurprisingly and for other reasons too. Another approach was to ‘teach’ service users research skills, effectively turning them into proto-researchers. They could contribute their experience but only in terms of traditional research methods and language. Sometimes people in this situation provided a ‘reality check’ on provisional research conclusions! But as we shall see in the next chapters, teaching research skills is not the only option. Contributions could take place quite differently. It could be narrative, photos, diaries, apps that capture the person or group’s experience of the issue at stake and feed this as critical knowledge into research and knowledge production. And the kinds of misalignments that can emerge can be startling in the case of what happens when ‘experts’ enter naïve territory as we saw in the last chapter. I want to develop this point later but one more thing first.

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There are a lot of practical matters that need to be taken care of for people to turn up to a meeting or event, especially regularly. It costs them their time and it costs them money. This is maybe one reason why ‘PPI’ is dominated by white, middle-class people who are retired. It sounds banal but it is critical. You need time and money to do this activity. Ever since I started this work I have insisted that survivors be paid for their contributions. The payments were pitiful amounts because otherwise people’s welfare benefits would be in jeopardy (most people were in receipt of these). Current circumstances are not helping here. Many university Payroll systems use an algorithm designed by the UK tax authorities, HMRC, to validate the claim. If a person submits a claim, it is run through this algorithm and is very likely to be rejected. On top of this, money has to be paid into a bank account and the most disenfranchised people do not have one. They have nothing to put in it. In our own work, we also used to be able to pay expenses including child or other care but this too is being closed off. So even if a grant proposal fully budgets for ‘user involvement’, which is rare, actually getting the money to people is a minefield. Interestingly, the papers above on coproduction written by service users are much more likely to attend to such matters and draw out the implications for who, then, will find it easy or even possible to get involved in research and policy development in mental health particularly. It is the case that the new NIHR Centre that incorporates the old INVOLVE has a ‘Payments Policy’ which is welcome. But it has little to say about the Department of Work and Pensions’ constraints on earnings for people in receipt of state benefits. It would be too negative as was clear in Chap. 1. The papers I have discussed show that there may be explicit forms of power and this is important. But also implicit ones such as inhere in method, the setting and form of ‘meetings’, with a fixed agenda so everybody just leaves the room at an appointed time, whatever there is left to say. A Maori participant in the interview study recounted how alien they found this, together with the lack of food—for ‘breaking bread’ together was a symbol of mutual respect and community. All of this will affect the ‘type’ of person that is drawn to involvement. But there is another dimension in that those drawn to involvement must feel they are comfortable with the discourse of research so that they can align with

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it—and often they are the same people—the ones with time and money and who are used to those strange events we term ‘meetings’. Finally, I’d like to reiterate that involvement with those designated mad is different. There is a scepticism about cognitive competence and even truthfulness, even the ability to accurately represent one’s own experience—encapsulated as ‘epistemic injustice’ both testimonial and hermeneutic (Fricker, 2007). I do not mean that this is ubiquitous, but I do believe it is still at work especially for some groups (see Chap. 7). The term ‘hermeneutic’ refers to systems of meanings—the ways that things, ideas, values and so forth are organised into some kind of symbolic and meaningful system, notably of language but also other symbols. I have been using the term ‘discourse’ in a very similar way. The theory around the term ‘hermeneutics’, used in the last chapter, comes originally from Habermas (Gaines et  al., 1991) and ‘discourse’ or ‘discursive practice’ from Foucault (Hook, 2007). However it is precisely defined, communication is important to ‘involvement’. It is not out with my own experience to come away from a meeting with only the vaguest idea what it was about. And I have a PhD—but not in informatics! So I will just set out three possibilities, ‘ideal types’ really, of how these exchanges can proceed in involvement spaces, always remembering that the organisation of these spaces themselves influence the conversation: 1. Aligned: speakers all understand what the others are saying—received, more or less, as intended by the speaker. This is not an inter-individual matter primarily, it depends on common access to the overall discourse in use at the time. 2. Unaligned where people do not understand what others are saying in the terms that those others intended. They understand something else. This arises from a clash or disconnect between discourses and it depends on different social positionalities and conditions of life. I will give an unusual example. 3. Absent for one group—there is no set of collective meanings that the group has available to express itself or articulate its experience. This is a form of silencing because you literally have nothing to say. It can also be, and is, pathologized. This is relevant to mental health (and more so if intersecting with other attributes). And it is not just a matter of

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‘content’ or ‘information’, it is form, tone and style too that convey meaning or inhibit dialogue. We don’t have the ‘words to say it’, or only embryonically. We are prevented from having them. This is going to be important later on. My conclusion here is that it is researchers, not survivors, that have to change. They have to learn how to make a space comfortable including everything from flexibility about the agenda, payment and the ways that issues are explained and formulated. Only then can survivors make a real contribution to knowledge. One of the best ways of not doing this is to call everything from personal experience to qualitative research ‘anecdote’. Some survivors prefer to go it alone but that does not obviate the need to collaborate, it changes it.

Settings, Partners and Mental Health So to ‘coproduction’. Not all the five publications that I have chosen to discuss focus on mental health—Miller and Wyborn and Williams et al. are about coproduction more generally, but they give some important context. Again, the texts come largely from two countries—England and Australia, although Miller and Wyborn are closely connected to the French school of Science and Technology Studies which was discussed in Chap. 4. The organisations with which service users are ‘coproducing’ in the five texts chosen are three universities and one NGO (the New Economics Foundation (NEF) in England). The paper by Gordon and others is the Editorial to a special issue of the International Journal of Mental Health Nursing which has papers internationally but focused on Australia and New Zealand (this reprints the Needham and Carr (2009) article which predates the others by a decade). It is important to ask who are the partners? They are, in an academic context especially, mostly mental health nurses and sometimes social workers, usually with an academic affiliation. Of significance, there is a large literature by a group in Australia and New Zealand and they use the term ‘allyship’ to indicate the kind of relation they are aiming for. The NEF report was commissioned by MIND, which is a UK NGO, and is aimed at people who work for

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MIND, paid or unpaid. Finally, three of these texts are led by service users themselves: the Special Issue, Roper et al. and Needham and Carr. Perhaps I should not say ‘led’ but at least 50% of the authors are service users or survivors. This is a very high figure because usually public contributors, in this case survivors, are not authors which is a very telling matter. It may be by choice but generally is not even considered, effectively dividing them from the ‘real’ researchers. Sometimes they are ‘thanked’ in the Acknowledgements section which says something about power. Personally speaking, this puts me in a slightly strange position which I have tried not to let influence what I write but doubtless without success. What I called for many years ‘collaboration’ has nearly always, for me, been in projects headed by psychiatrists and sometimes psychologists. The CRIMSON study discussed in Chap. 3 had no less than eight psychiatrists in the Investigating Team. Eight psychiatrists in one study was unusual but there were frequently three or four in large studies. One thing I experienced is worth recording as it does not come through in the literature discussed in this chapter. (It may be my paranoia, of course.) I often had the sense that psychiatric ‘colleagues’ unthinkingly saw me as a patient as well as a researcher. There would be evident unspoken curiosity about what was ‘wrong’ with me, especially around the ECT review (see Chap. 8) when I was explicit about having shock treatment myself. The context of research did not override what was almost a ‘master status’ as a psychiatric patient (Goffman, 2009). This extended to other service user researchers in these kinds of studies. This is not a personal gripe; rather it speaks to the lack of trust that senior mental health professionals have in the skills and judgement of ‘patients’, in other words a form of epistemic injustice (Hookway, 2010; Leblanc & Kinsella, 2016). It would seem that a ‘mad scientist’ is not just a rhetorical figure of fun but an oxymoron because science rests on rationality which we supposedly lack. But I do not know how general this lack of trust in ‘patients’ is and if it is more pronounced amongst certain disciplines. It does make for difficult ‘collaboration’ but did not, in all honesty, bother me too much when I first wrote about this (D. Rose, 2003). I was too grateful to be back in work. Now it does preoccupy me in a far more general manner as must be apparent. This can happen with experiences that stick.

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Historical Aspects of Coproduction The general context for ‘coproduction’ is important to these arguments because this concept has come late to mental health. The idea is attributed to the work of Elinor Ostrom (1990). She was concerned with citizen governance and did a lot of work with the police, but under the general umbrella of ‘public administration’ which would include health. An important follower was Edgar Cahn who introduced a system of time ‘dollars’, what we would now call ‘time banks ‘(Cahn, 2000). Cahn’s writing is very passionate. Miller and Wyborn (2020) discuss the application of these ideas to environmental sustainability practices where different stakeholders negotiate decisions. So the general context for the emergence of the idea of coproduction is very broad and global. One thing to note about Ostrom’s work is that she did not seek to level power relations—she expected conflict. Obviously the ‘criminal community’ are not co-constructing with the police (?). But she also did not think relations between police forces and members of the public, for example, organised to reduce crime in their neighbourhood, would be straightforward and she accorded the officers ultimate control. This is interesting because the argument exposes the contrary to what is usually written in the involvement literature in health and social care. Yet a position not unlike Ostrom’s does appear in the coproduction literature regarding health and I shall come to it (K. Oliver et al., 2019). At the same time, some represent the process as almost entirely smooth and uncontentious, building a model of involvement on this principle (S. R. Oliver et al., 2008). But Roper et  al and Needham and Carr (Needham & Carr, 2009; Roper et al., 2018) as well as the Nursing Journal Special Issue all make power central to their analysis and the first of these say coproduction must happen at each stage of research or evaluation although other involvement methods may be used too. They additionally emphasise what this means for research and evaluation practically and this is so for Needham and Carr too (Needham & Carr, 2009). The other strand in Miller and Wyborn’s argument about coproduction concerns the way in which this has been taken up in Science and Technology Studies (STS) (Miller & Wyborn, 2020). As I discussed in

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relation to knowledge and society in the last chapter, it is clear that in this approach many researchers were working with other organisations to produce knowledge. And, indeed, Callon and Rabeharison explicitly use the term ‘coproduction’ to describe these relations between researchers and ‘lay people’ (Callon & Rabeharisoa, 2003). I admit to being quite surprised upon reading this, as before starting the book I thought myopically that this was a concept that ‘belonged’ to involvement in health. I had bought the INVOLVE message, somewhere in my head. I argued also in Chap. 4 that the STS researchers mostly engaged with ‘high-level’ stakeholders so although there was potential in this work for involvement of marginalised groups in knowledge production, it had not been realised. Brian Wynne’s approach is an exception within STS (Wynne, 1996). Jeanette Pols uses Canguilhem’s distinction between medical and clinical knowledge—or the academy and practice. To this dichotomy she adds ‘patient knowledge’ as equally important (Pols, 2013). However, it is ‘important’ for taking medicines. People with many conditions have complex medication regimes and she describes the strategies and tricks they use to make sure they take the right pills at the right times. It is, in my view, quite demeaning and exceptionally simple as a view of living with multiple conditions but the STS way has lessons, I would argue. Pols’ paper does not concern mental health. Indeed, It should be clear by now that mental health constitutes a very small part of the entire literature base I have been working with and so this does not speak to the knowledge of those with severe distress and the way that knowledge is responded to. So not only am I drawing on other disciplines to make arguments, the authors of papers, the authorities, are largely professionals. This is important for qualitative research with service users. Most of this is done by professional researchers and so we get the survivor voice ‘second-hand’, maybe lost in translation. I have tried to include as much service user authored material as I can in the book but the fact remains that the literature is not dominated by us. In this context, ‘coproduction’ seems undercut before it starts. Finally, the five texts that I chose vary in other ways including, unsurprisingly, how they define ‘coproduction’. This should be clear already. But it is worth noting the report from the New Economics Foundation. This was commissioned by MIND and, to be honest, I do not see what it

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has to do with coproduction except in the domain of ‘treatment’. It advocates a strengths-based, asset-centred clinical relation based on reciprocity and trust. There is nothing wrong with this. There is also nothing new about it. But it leads to the absurd conclusion that if you are nice to your patients that is ‘coproduction’; if you are not nice to them it is not. I hate to end this section negatively, but some things need saying and this banal conclusion is not divorced from the general economic context where organisations like MIND are contracted out by the Government to the tune of billions of pounds to do social care work and small organisations which actually are survivor led or work very closely in collaboration with service users are simultaneously being closed, as I have said already (NSUN, 2019).

Examples of Coproduction? Williams et al. (2020) argue that PPI and coproduction are distinct; that coproduction is not ‘just good PPI’. What I will do now is take two studies one of which calls itself ‘coproduction’ and the other ‘PPI’ (Gault, Pelle, & Chambers; Renedo et al., 2015). I want to show that the ‘labels’ are almost the wrong way round in order to shed some light on some of the concerns raised. That is, Gault et al. is an example of PPI and Renedo et al. approximate coproduction although the authors themselves reverse these labels. This way of arguing has implications for who is involved and whose voice is attended to. (I wrote a blog on the Gault paper https:// www.nationalelfservice.net/populations-­a nd-­s ettings/black-­a nd-­ minority-­e thnic/will-­i ncreased-­m edication-­a dherence-­e ven-­i f-­ coproduced-­solve-­the-­problem-­of-­ethnic-­inequalities-­and-­injustices-­in-­ bame-­communities/ posted September 2019 and still available.) The content of the Gault et  al. paper is medication adherence by ‘BAME’ (Black and Minority Ethnic) communities—the lack of ‘adherence’ (soft word for compliance) is often used as a way of explaining the poor outcomes of Black and Brown people by services. The coproduction consists of three people from a local Recovery College, which I will come back to. Methodologically the paper is very weak and it is important to say this as the method used is ‘qualitative’. In involvement circles, qualitative

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research is often thought of as ‘better’ and often it is. But not here; the advantages are not intrinsic to such approaches as I will argue in Chap. 8. I would just like to pick up two issues—the ‘results’ given and quotations used and the ‘co-­ production’. The overarching explanation of why ‘BAME’ service users resist medication was held to lie in ‘BAME family culture’. But if you look at the quotations (which are in the Discussion oddly) several service user participants talk about racism, its history, run down housing estates and poverty. In other words, the participants were giving an explanation for their distress that was comprehensively based on social conditions—that ‘context’ that is so often stripped away in conventional papers on these issues. This stripping is actually replicated in the paper by Gault et  al. (2019). Effectively, the researchers could not ‘hear’ the social analysis; they interpreted everything through the lens of ‘cultural’, indeed ‘familial’, barriers to medication use. I am no pill shamer but would argue that this is a clear case of how misalignment between discourses, in a research context, leads to the Black participants not being heard, being silenced and published as saying something they are not. This is a formidable form of power. The ‘coproduction’ consisted of the involvement in the research team of three persons from the local Recovery College. We are not told their ethnicity. They appeared to have very little input at most stages of the research, except the interpretation with which they seemed to agree. Recovery Colleges vary internationally but most align with a medical or psychological model of distress and so the ‘research question’ would have made sense to them. The researchers controlled the entire endeavour so it is perhaps not surprising that they too missed the participants’ ideas of where their distress came from. They had one suggestion. The initial plan was that the study would be used in professional development for practicing mental health nurses. The people involved suggested trainees instead. It’s a good idea. But in no way is this ‘coproduction’. Ambiguity has limits. Power lay firmly with the researchers (they were the only authors), the involved group occupied the same hermeneutic space as the researchers and this meant that they did not query the interpretations of the researchers so apparently endorsing them. This study is PPI but an example of tokenism, in my opinion. And it understands its participants narrative in a very different way than I, also sometimes heavily medicated but a white

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person, interpret them. No doubt there are nuances, even frank arguments, that I cannot pick up as a white service user, but I hope this is enough to make the point. The second study calls itself ‘PPI’ but is quite unlike the above—except in one respect, which I shall come to. It concerns a Patient Group (diabetes not mental health although there is an overlap in that psychiatric medication can precipitate diabetes). The group works with one of England’s applied biomedical research centres (CLAHRCS). CLAHRC stands for Collaboration for Leadership in Applied Health Research and Care and is one of the less meaningful acronyms in NHS research. This particular one used a continuous quality improvement approach for small but incremental changes in practice. The paper considers the role of a standing Patient Group in this improvement process (Renedo et  al., 2015). It uses the sociological idea that a ‘rupture’ in a person’s life leads them to alter the ‘symbolic resources’ they use to make sense of it and to accommodate to it (Zittoun, 2004). The ‘rupture’ here was the diagnosis of serious illness. The focus of the study is the inner workings of organisational culture and the research was a four-year ethnography. The patient participants are almost wholly positive about their experiences. The observations and interviews, according to the authors, showed that the Patient Group used elements of the organisational culture to enable increasing participation: a non-hierarchical culture; staff ability to ‘model’ respect; commitment to rapid action and constant data collection and reflections. The quotations and field notes show that the Patient Group members did indeed incorporate these principles (but remember what I said about the ‘filtering’ of the patient voice). As they include power and respect, this would seem a positive contribution. But there is one serious problem. The members of the Patient Group were all professionals, some in health, and all had been involved in ‘PPI’ activities before (which they compared unfavourably with the experience studied). So they would, I would argue, find it relatively easy to ‘make use of ’ these symbolic resources because they were not far from what they were doing routinely in their work lives (often voluntary). Their everyday discourse and their involvement activity were easy to align. They made some changes. But not a change in the overall discourse or hermeneutic space. And they had

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time on their hands and did not need money. The authors are aware that a different group might have reacted differently. This is at minimum ‘good PPI’ but is beset with a problem that has preoccupied us throughout—the type of person that usually ‘does involvement’. This is not just a question of exclusion and power, or it is but such that it affects the process and outcomes of studies. It is unlikely that such groups will challenge work fundamentally, for instance, how and what data are collected, whether it is ‘PPI’ or ‘coproduced’; good work or bad. Interestingly, a staff member said they thought this kind of group actually squeezed out other forms of community engagement, maybe because this group was easy and comfortable to work with. I would like to enter another personal example here. It refers to a meeting I had with someone setting up a Coproduction unit in a university with a focus on mental health. They told me of the resistance they had met from some academics, some of it explicit and some more hidden but thereby more powerful—that is, someone is criticising you whilst being very respectful and interspersing the critique with positive terms. I subsequently saw some of the public group give a presentation and they were not the white, retirees or dutiful mental patients of the above studies. But I came away feeling very despondent. Because what this person told me mirrored so much my own experiences in setting up a Service User Research unit in a university nearly 20 years before. Nothing seems to have changed. Maybe everyone has to learn for themselves. I hope that learning will be quicker as a result of what has been done already. I hope that by calling it ‘Coproduction’ the issues of power and strategies to challenge it will be more evident. But I might have wasted 30 years. Finally, all this work has been in the sphere of health, which I think is unfortunate because I will ultimately argue that mental distress, in its severest forms too, is not a matter of ‘health’ primarily. There is, however, a model of coproduction in the social care field, developed by the Social Care Institute for Excellence (SCIE) (2013). The coproduction team at SCIE was headed up by Pete Fleischmann and I have benefited from discussions with him and reading an unpublished essay in which argues for a central role for the user movement in coproduction, although ‘social care’ goes beyond mental health of course. Pete now has his own company ‘Coproduction Works’. SCIE’s approach to coproduction is not a

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‘health’ one and in some senses brings together and updates existing practices and concepts, producing something that is more than the sum of its parts. There are four ‘principles’: Equality, Diversity, Accessibility and Reciprocity. Coproduction here works at both individual and collective levels and the culture and structure of an organisation are central. It is important to note that coproduction in social care involves the workforce as well as service users. The social care workforce in England is not treated well. It is made up, in some regions, largely of people from racialised groups who are on unstable zero-hours contracts. These staff work for private companies, which are increasing as money is withdrawn from regional government. They are exploited and they know it. It is not the easiest set of groups to bring together under the four principles: management, public or private, front line workers and a variety of client groups. There is a policy context to take into account. The term ‘coproduction’ appeared first in law in the UK in the Care Act 2014 (England and Wales) and has appeared in other legal and policy documents since. But using a word does not guarantee practice as we have seen repeatedly. SCIE has worked very hard in challenging circumstances to develop a coproductive way of working. They make the interesting point that expertise need not involve power inequalities, an argument also made by Quinn and colleagues to be discussed later (Quinn et  al., 2020). We are so used to expertise being imbricated in power differences that it is quite difficult to think what this would look like. In terms of practice, which is really the whole point of the approach, two points may be noted. One I have already made. Their definition of ‘equality’ is based on the assumption that everybody has assets. I do agree with this but it can go wrong. So if a care worker takes a ‘you can do it’ approach, this could feel like the exercise of power in the sense of not understanding that there are real limitations. There is also a tension between the coproduction approach advocated by SCIE and the policy of ‘personalisation’. At an individual level, this can work. But coproduction is also meant to be about communities. When resources are scarce, there will be competition for money and this is likely to fragment communities rather than draw them together. ‘Personal budgets’, as an example— where the client is given a sum to ‘buy their own services’—has even been pointed to as an instance of ‘individualism’ (Adeponle et al., 2012). And

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so, this does not help Pete Fleischmann’s advocacy of a greater role for the user movement in coproduction. And the language used overlaps with an emphasis on citizenship and rights. In other words, we are no longer in the closed off space of ‘health’, which has been a theme throughout this book so far and will be developed further. I move on now to some other critiques.

The Costs of Coproduction? There have been many criticisms of involvement and especially coproduction. Henkel and Stirrat speak of participation generally as a ‘spiritual duty’ or ‘new tyranny’ (Henkel & Stirrat, 2001). Their argument is mostly at a global level but includes health although little, once more, on mental health as a context for involvement. More specifically, Oliver et al. have argued that coproduction is counter-productive or, rather, that it has a ‘dark’ side (K. Oliver et al., 2019). They say this on several grounds including practical ones such as that it is expensive. It is not expensive in terms of what involved people get paid although staff time and resources are a different matter. However, in many places, especially academic ones, responsibility for this kind of work is devolved down to the most junior research assistant who is over-worked already. The most telling ‘dark side’ for me though is the authors assertion that ‘coproduction’ will lower academic standards and damage their reputation. I do not think that changing knowledge and changing who produces knowledge will ‘lower standards’. I think it will improve them. But as must be clear by now, I am not using the standard criteria. A group of us, all academics but some also service users, responded to this article with the lead author coining the term ‘cobiquity’ (O. Williams, Sarre, et al., 2020). Much of our response was about the university context as hostile and ‘technocratic’ (rather than ‘democratic’) as well as discussion of the inclusion of marginalised groups. It is important to analyse the university context, but involvement and coproduction do not just take place in universities and this is important, as we have seen. Outside the academy, people are working as consultants and in small groups and are able to address questions of more pressing interest to service users

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than most. All the papers I have just discussed were written by academics, and whilst it is the case that some of these were ‘outsiders within’, it is almost inevitable that your work will be sanitised—if for no other reason than securing funding. The consultants and grassroots organisations find it much more difficult to get funding. This is the overall political context and survivors internationally are becoming disenchanted with the situation in the UK. Yet we keep pushing, don’t give up. The disenchantment is valid in my view and other voices are needed.

Partners and Allies Allies, in mental health activism, have always been a contentious issue. As long ago as the mid-1980s the organisation Survivors Speak Out in England spent two years debating the role of allies in its evolving constitution. First, they were given the status of non-voting members and gradually they disappeared. The main concern was that they may be well-meaning but would ‘treat us like patients’. Power, again. But too much of this book has been about the UK so I would like to quickly look at the literature from Australia and New Zealand where involvement includes the idea of ’allyship’. There are service users active in research and policy-making in Melbourne, Queensland, Sydney and Canberra in Australia and at Otego in New Zealand. The special issue on Coproduction that I discussed at the beginning of this chapter was based in Melbourne which was probably the first Centre of activity and it still conducts path-breaking work. Some of it’s ‘partners’ or ‘allies’ are in Canberra, however, at both the University of Canberra and the Australian National University (ANU). One of the Centres at ANU works with partners from the voluntary centre in Canberra and these representatives are authors on papers, one of which is in the Special Issue of the Journal of Mental Health Nursing I discussed earlier (Banfield et al., 2018). The partners are nearly all survivors or carers. Headed by Michelle Banfield, the Group has been heavily influenced by England which, let us say, is a mixed blessing! However, they have also discussed survivor research in the specifically Australian context which is quite different to England in the sense that lived experience representation is mandated at all levels of

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governance (Gee et al., 2016). I visited Australia to give presentations, seminars and a day-long Master Class for three weeks in 2019. It’s hardly ‘insider knowledge’ but I did meet many key people face-to-face for long conversations. This group of people have also addressed the terminological question of ‘consumer’ which I will discuss in the next chapter. The term ‘consumer researcher’ seems last to have been used in 2018 (Happell, Scholz, et al., 2018) and the move to the term ‘lived experience researcher’ started around 2013 with an internal Queensland University paper by Louise Byrne (2013). The chief ‘allies’ here include Brenda Happel and Brett Scholz. Brenda Happell, who has now retired, was a Professor of Mental Health Nursing and most of her work is on Nursing and especially nurse education. But she has consistently worked with ‘lived experience researchers’ for over a decade. Work from this group, especially from Cath Roper and Sarah Gordon, has covered the principles and practice of involvement and coproduction and has also addressed the question of ‘leadership’ (Happell & Roper, 2006). There are also a number of consumer educators in Australia and the difficulties they have encountered have been documented (Happell, Waks, et al., 2019). However, the group has considered the position of allies and they seem to see this approach as a work in progress (Happell & Scholz, 2018). The benefits of lived experience researchers being able to ‘see’ things that conventional researchers cannot have been discussed (Happell, Gordon, et  al., 2018). But in a coproduced paper published in 2019, the allies still describe themselves as ‘chipping away’ (Happell, Gordon, et al., 2019). So, the aim of those who work in this way is to be ‘allies’ but the path seems slow and the lived experience researchers do their own work just as the ‘allies’ do. It seems that allies are trying to learn the lived experience researchers’ way of thinking, working and speaking but the equivalent ways of thinking in nursing or in social psychology get in the way. Again, we have a non-­ alignment of discourses struggling to connect. The ‘allies’ are upfront about this and they are excellent fund-raisers but, when I visited, my impression was that their approach was really one of ‘facilitation’ rather than active intervention. Nonetheless, this can be quite tenable. To provide non-conditional funding and make publication possible is no small

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thing. Problems arise when there are conditions, which I have seen and been subject to, but cannot cite for reasons of anonymity. Sarah Gordon, who is part of this group, works in New Zealand and has a Maori Advisory Group. For the interview project she helped find Maori for us to interview. They did not speak much of partnership or involvement. One person was doing research on the large numbers of Maori subject to seclusion. But the whole narrative was different. He told us that Maori did ‘stigmatise’ mental illness not for reason of the so-called illness, but because it was an alien Western idea. It was not the person who was stigmatised, it was the way of thinking that was rejected. And he made clear what seclusion meant for Maori. Bad enough for anyone, but if your normal life is a more collective one to be locked you up by yourself for days is literally torture. That is a little about Australia and New Zealand except for one thing that sticks in my memory. One PhD student said to me: “I will never give up my principles”. Rather taken aback, I replied: “Well, I did. I’m not proud of it”. And sometimes you are not even aware. This speaks generally though to different degrees. All ‘survivor researchers’, or nearly all, do collaborate and I have given good and bad examples throughout. Collaboration can and often does mean that survivor researchers give something up, something important. I believe we can only approximate ‘coproduction’ in mental health, that there are intrinsic inequalities and the situation is worse where other intersections are at play, especially racialisation (Diana Rose & Kalathil, 2019). Talk of ‘shared decision-­ making’, for example, is to me fictional because, of course, the professional has the ultimate say. The options are set by the professional and any disagreement is resolved in their favour. Even in articles where it is promoted, this is obvious to anyone who has used mental health services (Perestelo-Perez et al., 2011). I want to end by talking about power within the loose group of people who identify, wholly or partly, as survivors or user researchers. But first, a few more remarks about power.

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Power Again Indigo Daya and colleagues have argued that power is becoming more flexible including in mental health (Daya et al., 2020). I would rather say that it is multiplying. First, there has long been a user literature on coercion and on practices such as control and restraint. This focus on ‘power as domination’ is and remains valid. It leads me to ask: what does it feel like to have power exercised on yourself, on your body? To be held down and injected with ‘tranquillising’ drugs so you sleep for up to 12 hours or more? What does it feel like to go under the anaesthetic for an electroconvulsive shock and wake up with a brain-splitting headache? And how does it feel to hear that this subjugation was in your ‘best interests’ and know that the public know nothing because ‘the doctors will take care of it’. I can tell you—you do not feel human. Your experience is discounted. And so we analyse. Does it change such to reframe them—does it change the experience, or ‘only our interpretation of it’? And there is a difference between ECT and being shaped to ‘recover’ as a person. Never mind five IAPT (short Cognitive Behavioural Interventions) sessions. Though some would say the goal is the same. There are many differences in forms of power specific to time and space, to a history of colonialism, to gender patterning, many differences. But in many places, the person is bad or mad or both, not a situated human being occupying certain positions. To say “So-and-so treated me really badly” is expected of us, we are thought to be the kinds of people who complain. But rephrase it and it becomes different: “the institutional set up and rules of relating made this bad treatment seem something helpful in their eyes, not in mine”. This is partly recognised by some, but not from a social justice perspective. Coercive measures will be framed as beneficent at least—“for your own good”—the “best interests” position or defence (Lidz et al., 1995). Or else, it is regarded as the fault of the person at issue; their behaviour was to blame, they were “asking for it”. That second approach is the one that staff ‘normally’ take and we have seen this is disproportionately visited on Black people. It is also common for those with a diagnosis of ‘Personality Disorder’ (Bonnington & Rose, 2014). Doctors write the ‘prescriptions’ for these practices but it is largely nurses who deliver them. Yet nurses

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want to be our ‘allies’. Individuals nurses can be brilliant. But as a professional body (Cotterell et al., 2012; Cusack et al., 2018)? So there is direct coercion but we have seen also in Chap. 2 that power can operate by co-option. Recovery and peer workers were ideas that originated with service users and somehow parts of the mainstream have ‘taken ownership’ of these practices, this knowledge and mutated it. Presciently, in 1997 Harrison and colleagues argued that such co-option and other aspects of ‘involvement’ were ‘technologies of legitimation’ (Harrison et al., 1997). In other words, the status quo was the beneficiary. And I have argued that in academia power inheres in hierarchies of knowledge, methods and peer review. This is not at all visible because it is part of the bedrock of ‘science’ which is still held in high esteem by many, especially high-level power holders. Being invisible, it is extremely difficult to challenge although there have been critiques from survivor researchers and other knowledge-makers as we have seen (Keating et al., 2002). Yet we will not go away, there is a legacy described already and I will go into more detail in the next three chapters.

Conclusion This chapter has addressed the reality that most of us most of the time have to work with other groups in the process of knowledge-making and in activism. Primarily we have to work with academia or some NGOs although we may try to include non-academic groups or individuals on conditions acceptable to them. This reality is not propitious but neither is this chapter a counsel of despair. I hope by laying out the dilemmas we can begin to tackle them. There is too much self-flagellation amongst some mainstream researchers and it would help if they talked to survivors rather than each other. Of course people need jobs, and of course some people do talk intensively with survivors. But we do not stop here. Whilst collaboration will continue, I think we need to mark out a path for a specific form of mad knowledge and user research. The rest of this book tries to do this. And I mean ‘mark out a path’ not produce a finished product because no one person has any

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business doing this by themselves. There are also formidable obstacles which revolve around the silencing and reasons for it with which I began this book. And as I have argued throughout, responses to mental distress go beyond any clinical encounter. The most obvious overlap in the USA and UK is with the criminal justice system. Prisons and mental hospitals are two forms of incarceration with much in common including the character of the inmates. There is a special ‘discipline’—in both senses—of forensic psychiatry and it partakes in the structural violence of which I have been speaking, intersecting with racialisation (Farmer, 1996). But psy spreads its tentacles everywhere, wrapping them most tightly around the marginalised—education, employment, family, welfare. Psy is an ‘apparatus’ where power is not a zero-sum game but productive and adaptive to changing situations. Power is also not always negative, it can be used to steer change (N.  Rose, 2018). So ‘empowerment’ again is not individual, or not only individual, it (should) operate at a structural level to facilitate resistance and resilience. These last few sentences show again, I hope, that this book is not a work of despondency. In research and activism I see new ideas bubbling up, and despite attempts to squash them, we have come far enough that the blanket silencing is lifting, slightly. But only for some. Not for homeless people, those in poverty and food poverty, those incarcerated short or long term. Any new approach must accommodate different groups and in multiple ways and recognise that the most marginalised do have knowledge but the blanket of silence has not lifted. New approaches must also accommodate the non-homogeneity and the instability of the field I have been writing about: accommodate it, not abolish it. Time to move on. We are and are not alone. In the academy, there are attempts to ‘decolonise the curriculum’ (Smith, 2021; C.  A. Williams, 2018). In activism, new campaigns and supports are emerging. Unsurprisingly, when it comes to cuts, such endeavours are the first to go. This has to do with knowledge. So the kind of thinking that is prized is logical, neutral, objective and empirical. And the more educated you are the more Eurocentric you are liable to become. It is exceedingly difficult to break this. Learning from non-Eurocentric thinkers is possible but slow and I am not yet equipped to write about this nor to adjudicate its

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relevance. Which is an enormous gap in my argument, I acknowledge. But flipping the lens on Eurocentric psychiatry is different and that is what I am going to try to do.

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Part III Foundational Categories and User-­Led Research

6 Experience as a Foundation of Knowledge-Making: What’s in a Name?

Background In this and the next chapter I would like to pull together some threads that have appeared already, elaborate on more and engage in some conceptual arguments that might shed light on the landscape of survivor contributions to knowledge-making and the place of experiential knowledge within it. Of course experiential knowledge is not tied to involvement or any other specific activities: it can stand alone and has been a mainstay of survivor thinking for half a century (Chamberlin, 1978; Faulkner, 2017). It has developed and changed and now there are many versions. A starting point for me is the role of language and whether the changes I have described in the last few chapters will thrive, complexify and grow or whether they will dissipate in the face of stronger stuff. The ‘medical model’ with its 1000s of ‘new beginnings’ has been critiqued roundly (for many). Other elements have received less attention, particularly ‘decontextualisation’, but need to if we are to capture key thinking and its problems. And perspectives from mental health street life to movement intellectuals (they are not exclusive and I don’t like the word) tell us something new about mental health. This ‘something’ is the © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_6

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activity of user groups, knowledge-makers, advocacy and service user campaigns claiming their place as rightful knowers and actors. In other words, about breaking the silence again. I will start with languages and other forms of communication. We only know people’s experience in how they express it and we interpret it in terms of our own tacit knowledge. In most cases there is a discourse and practice that people draw on in speaking about their experience. This is a vast topic but one important aspect is that these organising discourses must be shared for people to be able to communicate at all, as I described in the last chapter. In other words, it is too simple to say ‘I experienced X’ and then describe it because the description is already an interpretation and can be variously received. To narrow this right down, I will consider the names individuals and groups adopt and then report on answers to the question “What do we call ourselves?”. This was the first question in the knowledge-making interview project. Without any detail I can just say that terminology has a central role in academic and policy circles. But it is just the entry point because these ‘names’ carry history and politics, multiple connotations and discourses, associated with well-­ rehearsed discussion topics. The names are a kind of condensed symbol for all this. I shall start with the question of terminology/meanings that surrounds different kinds of activism, involvement and knowledge-­ making. Firstly, what do individuals or groups call themselves and what connotations and relations are evoked by these names? In particular, what is ‘lived experience’ in relation to individuals and user groups? The current qualifier for ‘experience’ is ‘lived’—lived experience—so I will look at this because it is both topical and recent but it is one of a number of terms in circulation, so I am not privileging it in any other way. The choice is more practical.

Process As said already, I will be making use of analyses of language, not because it is a ‘reflection’ or ‘representation’ of experience or anything else but because it shapes the way we think and act and is both structural and dialogic. Whilst much ‘Othering’ takes place symbolically, this is

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particularly the case for those with mental distress. We break cultural and linguistic norms to the point of being unintelligible, to some. This is taken to mean that a person’s experience is unintelligible. At another level, coercive measures are embedded in a discourse designed to justify them and are often represented as benign. Two poles of power. This is not to deny material forms of constraint and cruelty (Scheper-­ Hughes & Lovell, 1987). It has been argued that deinstitutionalisation failed because of legal and other legacies, some very subtle, that act on bodies in ways ranging from detention and shackles to the negative effects of some anti-depressants (Spivakovsky et al., 2020). This is shown also by Metzl’s analysis of the changing nature and language of the symptoms of schizophrenia such that the ‘protest psychosis’ apparently displayed predominantly by Black men involved in Black Power in the 1960s and 1970s has disappeared as a category in DSM but legacies persist (Metzl, 2010). Poverty, poor housing and lack of ‘inclusion’ are also significant in mapping people’s situations but not really attended to by the psy disciplines. Survivor activists can contribute and there is a growing number of user researchers. But, to be reductionist about it, they are low on the hierarchy of concerns for psy researchers, even though the opposite is often said. We saw this in the last chapter and I will have more to say in the next.

Naming So this chapter is about names and namings—of groups and activities in the field of madness. Even the simple act of naming an identity, activity or group brings with it a whole array of history, politics and other multiple connotations and these affect how particular settings are experienced. This is not to say that single words are the fundamental units in language—the reverse is the case. But in terms of user or survivor groups in the field of madness, ‘naming’ yourself or a group is not a neutral act. Usually, a single word tells little, it is the discourse in which it is embedded that makes meaning and changes practice. Yet a single word can draw on legacies and consolidate meaning, serving to solidify the discourse it sits in, often implicitly. I will give some examples from the field of mental

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health activism and knowledge-making. By ‘consolidating’, I mean that a single word or phrase can encapsulate a myriad of arguments into one novel term that takes for granted the legacies and tacit assumptions that it emerged from. For example, consider the arguments at play in this short statement: Mental health policies and services are in crisis—not a crisis of chemical imbalances, but of power imbalances. (Puras, 2017)

So, understanding the meaning of ‘experience’ and in this case ‘names’, will be approached this way. So to the interview study of survivor knowledge-­makers and activists. The first question was: “what do you call yourself or your organisation?”. This linked to debates over legitimate forms of knowing and how they are situated. I believe we need theoretical work because otherwise names of groups are reduced to ‘descriptions’. Or even labels with little content. I seek to explore what counts as knowledge and examine its relations to ‘experience’ in this field specifically. Anything wider would be unwieldy although the focus on health is extremely limiting. Chapters 3 and 4 were mainly organisational accounts, although underlying conceptual debates were present by default. Here, I will begin to try to synthesise and set the terms for the second part of the book. Finally, an observation. Writings on user ‘experience’ come more often from professionals than survivors but there is growth in the fields of survivor research and knowledge-making. Growth that is often pushed away. This imbalance must be stressed in all areas of user activity. When and if it reaches the level of publication, writings by non-users far outweigh writings by survivors. This is a dilemma, we hear the voice of survivors filtered through the concerns of the mainstream and mainstream research. I have tried to include as many survivor writings as possible to balance this. Clearly, not everybody is involved in the same way or in the same terms on the ground that we are covering. Not everybody has the same ‘experience’ even in similar situations. What people understand by a word, phrase or discourse, even how they interpret an action, will vary depending on the people who are listening or watching and although we cannot

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homogenise, intersectional positions are likely to provoke different responses to the ‘same’ talk. I will pick up these points in the concluding chapter which tries to sketch a pathway for Mad Epistemologies, plural.

Terminology, Identity and ‘Who Counts’ There has long been a question amongst survivor groups: what should we call ourselves/myself? This chapter is partially concerned with how language use shapes and mediates experience, identity and activism in the Global North as well as reciprocally affecting what we mean by ‘experience’. Throughout the book so far I have been fairly liberal, even loose, about words and discourses to use as well as associated supports. This was deliberate but I did not say why nor develop it. The principal reason is that many different terms are used, all have associated attributes and carry connotations that are both political and seek, or seek to prevent, change (Christmas & Sweeney, 2016; Croft & Beresford, 1995; Lyon & Mortimer-Jones, 2020). Here are some of the terms in use: patient, consumer, peer, survivor, service user, lived experience, persons with a psychosocial disability, expert by experience, loony, mad, barking. Here we also meet the question of what the terminology is doing and how key words are embedded in and take their meanings from the settings in which they develop (Cooke, 1997). Those settings include wider public ones although this is seldom referred to. The predominant setting for this work is ‘health research’ as I keep saying and will develop later. There are significant debates about naming within this field which shows that, for many, it is a field where divisions exist. But it is also one of growth. And here I will focus on the way the terms for user groups and their members develop and change and why. Terminology has a place because names of groups can encapsulate their activities—Survivors Speak Out, Recovery Colleges, User-Led Organisations, Hearts and Minds, Persons with Psychosocial Disabilities. Disputes often arise over names; they are struggles to grasp challenges and to find resolutions in a field crossed by power (Guenther, 2009). But when we asked people individually “which term would you apply to yourself?” we entered the domain of experienced identities and identity politics and the answers

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were extremely complex (Lanehart, 1996). This applies in other aspects of critical theories. For instance, in critical race theory both Gilroy and LaCapra approach this topic historically as well as politically (Gilroy, 1988; LaCapra, 2004). In relation to madness, people do not find naming a simple question to talk about and there are heated arguments both within groups and for people individually. Here we find the beginnings of the relation between identity and experience, that your ‘experience’ will have a bearing on your identity as well as vice versa. The ramifications of this have best been explicated by LaCapra (2004). The link with identity politics is made clear by Paul Gilroy’s There Aint no Black in the Union Jack although Gilroy himself is critical of identity politics. The closest we get in the present field is the collection Mad Matters (LeFrançois et al., 2013). A later collection is analysed in the Conclusion (Beresford & Russo, 2022). The fact that there are so many names calls for a comparative inquiry. It also speaks to the instability in the field highlighted in the first chapter.

Lived Experience As I write, ‘experience’ has a qualifier—it is lived experience. A rapid review showed that nearly all texts on ‘lived experience’ as well as comedy cartoonists such as Dolly Sen concentrate in part or entirely on the concept of ‘identity’ (Sexton & Sen, 2018). But the reverse is not the case. The question of identity is the topic of a huge literature but very few of those same papers reference ‘lived experience’. In fact ‘experience’ alone sometimes does not figure. The absence of the phrase ‘lived experience’ may just be that it is a relatively new idea and we can examine its meaning and its use quite straightforwardly. But simple ‘experience’ can be missing too, within or without research and policy spaces. That it is present in survivor knowledge emphasises its importance. Experience is a foundational category (Scott, 1991). With these remarks in mind, I will adopt the strategy of comparing names of knowledge-making and activist groups with each other to see if this clarifies what people mean and do with reference to ‘(lived)

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experience’. I shall also draw a provisional distinction between the use of safe and strong language to illustrate similarities and differences. It is not a common distinction, but the meanings should become clear as I proceed.

Disability Under Erasure To start with an example from the field of disability studies, Andrews and colleagues (Andrews et al., 2019) write about naming and terminology in relation to physical disability. They argue that ‘safe terms’ such as ‘differently abled’ or ‘bodily challenged’ function to erase the reality that is disability as lived, that disability is grounded in culture and norms as well as materiality. Having no direct references to the reality of disability is a way of hiding it or ‘putting it under erasure’ and skimming over this aspect linguistically is part of covering up more contentious issues such as poverty and a hostile environment (McWade et  al., 2015). By calling moves such as this ‘safe language’, I am also saying that it is an approach that is apparently more descriptive and neutral to many—some survivors as well as professionals. On the other hand, this ‘safe’ terminology can jar at first.

From Soft to Strong and Back Again A term that has resonances with the idea of names that cover up other realities is that of ‘consumer’. This originated in Australia as a counter-­ reaction to ‘patient’. Whilst the term ‘consumer’ had quite a life span, there was a fundamental problem at its heart. ‘Consumer’ comes with many connotations. It implies a person in a marketplace, free to choose what products to buy and with the ability to change suppliers if they are not satisfied with the one they first chose. It thus resonates with ideas of freedom but in a market. Mental patients are not in this position. They are not ‘consumers’ in this sense. People behaving and speaking in unfamiliar ways can be forced to stay in an institution, and they can be given ‘treatment’ against their will, outside institutions too. In some countries

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health and welfare services are organised such that you have no choice of practitioner: even with voluntary treatment as you are allocated the doctor responsible for the area where you live. In other countries, the organisation of health and public services can be such that you need a ‘diagnosis’ to claim welfare benefits at all, an argument nicely put by UK activist Group ‘recovery in the Bin’ (www.recoveryinthebin.org; last accessed 17/01/2022). The balance been public/private/no services is also an issue of course. Again, transgender people are forced to accept a psychiatric diagnosis (‘gender dysphoria’) if they are to progress their transition. This applies even if they are highly critical of psychiatry as a whole which is a paradox for many (Winter et al., 2016). So on many counts, service users do not meet the criteria for being a consumer; the very term can mask coercion. One UK survivor in the 1980s used to say “psychiatric patients are consumers of psychiatry like rats are consumers of Rentokill” (Rentokill is a rat poison) (Mike Lawson, pers. Comm). Less flamboyantly, Peter Beresford has written about the organisation of health and welfare services and the constraints that are put on practice and research when linked to wider aspects of socio-­ economic structures and practices (Beresford, 2018, 2020; Croft & Beresford, 1995). So it is not a ‘pernickety’ point to focus on names as they do not stand alone, they ‘stand for’ and carry many attributes in relation to what they mean and, for some, how you are positioned as a subject including in the popular media (Thornicroft et al., 2013). We shall come presently to ‘lived experience’. Settler Australians were protective of the term ‘consumer’ but latterly have embraced the term ‘lived experience’ as shown in the last chapter.

Survivordom A strong use of language would likely include words like ‘survivor’, ‘ex-­ inmate’ and ‘force’. This also is set in a space where there are protests and demonstrations and explicit descriptions of violent treatment. In the 1980s a British Television channel screened a film with the title We’re Not Mad We’re Angry and some years later a Black user group’s contribution to an Executive Meeting of a provider organisation was to dance around the

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Boardroom Table with a tiger skin draped over them. Symbols do not have to be words (sign language counts of course). The name of the group is the name of a proud tiger in the original language (SIMBA) and so we have another, though opaque to non-native speakers, linguistic connection. There were also demonstrations at the same time about a poster focused on community care that portrayed a ‘mental patient’ as violent and without ‘insight’. And a danger to you, with a finger pointed at the looker. Strong statements call for strong responses. We had statistics and loud voices. This kind of language use (shouting, in a word) and associated action is frowned on by the authorities, which is exactly what the protagonists wanted. Whilst ‘consumer’ seems almost emotion-free, the term survivor evokes anger in the name and also in professional responses to it (Russo, 2012). These issues are complex though. Whilst ‘survivor’ is often used on its own, in some spaces they are put together in this form: consumer/survivor… (Frese & Davis, 1997; Ochocka et  al., 2002). It may be a tactic to avoid contradiction, or it may be an attempt to homogenise. Or be inclusive. In fact, I have done it myself (in the form of ‘user/ survivor’) and I am not exactly sure why—it is not that I think these are two names for the same thing, that is for sure (Rose, 2017). In the UK we had Survivors Speak Out and in California in the 1970s and 1980s The Mad People’s Liberation Front. Again there were, as said before, publications such as Pheonix Rising magazine from Toronto, which is a radical but also optimistic title.

A Third Way? Another example from the USA is more nuanced and complex. Here, until recently ‘consumer’ was incorporated in the phrase c/s/x (consumer, survivor, ex-patient). Whilst integrative, this was also quite confusing as these terms can function as opposites at some levels (e.g. consumer vs survivor) and additionally the acronym homogenises self-descriptions at a stroke. By contrast, I have been at pains to look at specificity as well as commonalities. But for some the terminological shift is squarely political, deliberately to elide differences. This strategy has been called ‘strategic essentialism’ as explicated by Spivak in relation to post-colonial regimes

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(Spivak, 1988). A common name and language are developed but for strategic reasons to justify actions (Danius et al., 1993). But, at the same time, consumer, survivor and ex-patient as terms carry their own specific connotations and these are deleted by the melding into one. Inevitably terms like ‘survivor’ or ‘ex-inmate’ stand in opposition to ‘patient’ in a completely different way than ‘consumer’ does. But perhaps we should not be too hard on contradiction in this space. So, at least in terms of names, I have identified three broad types in the Global North particularly, which created knowledge as part of their history and still do. The fourth discourse concerns alternative supports such as Sherry Meads’ “Intentional Peer Support” (Mead et al., 2013). Where does the language and practice of ‘(lived) experience’ fit in relation to this plethora of terms? Does it capture what is going on in these activist spaces—some or all of them? What is it experience of? Before addressing these questions let us look at some more implications of our three sets of names. I will leave Mead until later. Importantly, I do not want to be emphatic here because within-group differences also exist and some names are compromises.

Implications of Names First there are strategies for change associated with group names and the experiences they signify. They may be apparently nominal or may be aspirational. Activist groups generally seek change but it ranges from choosing the colour of the paint on the corridor walls to abolishing psychiatry itself (Devaney et al., 2017). I would argue that professionals prefer safe language which they then equate with ‘professionalism’: that is, language that keeps them safe, which probably means biomedical language in part, because it causes less trouble and the hierarchical relation is taken for granted, being based on ‘expertise’. ‘Expertise by experience’ has been used to counter this. To cause less trouble is controversial in mental health and is one axis on which it is different from most other groups’ involvement in research and policy. Much work is required to sustain user groups of most kinds. Pressure is put on users and survivors to seek only small changes, just exit the space or else suffer withdrawal of funding. The

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pressure to keep demands minor, including in research, is associated with the use of safer language as well as other things, like method. Terms such as ‘engagement’ and ‘collaboration’ enter the picture, and these can masquerade as a diminution of power differences whilst only minor accommodations need to be made or even none at all. Language can occlude and it can be embedded in violence. I do not say that these differences only exist at a linguistic level nor that the ‘language/discourse’ is reducible to words and grammar. But forms of language use can make asymmetrical power relations seem less entrenched and apolitical and this impacts experience because of how it is framed. It is here that ‘consumer’ led the way by indicating a market relation between equals. The linguistic approach I am drawing on here is that of John Searle (Searle, 1985). Of course, some persons would welcome this hierarchy and its effects if it is represented as a route to inclusion and alignment with cultural norms. People may also want to distance themselves from strong terminological naming because their ‘identity’ is subject to discrimination at many levels already. They do not want to be ‘out’ (Stuart, 2008). Neither do they want to be stigmatised. And so a yearning for normality develops (Lofthus et al., 2018). And in Chap. 2 I looked at how the term and the discourse of ‘recovery’ promotes this. Indeed, Lyon and colleagues found that the preferred term by people with a psychiatric diagnosis was ‘individual’, followed by ‘person with lived experience’. ‘Survivor’ was the least liked term. The authors explicitly place their work in a ‘recovery framework’, illustrating the point that names stand in for complex ideas (Lyon & Mortimer-Jones, 2020). The preference for ‘individual’ is the reverse of what Andrews and colleagues advocate. These authors propose being very explicit about challenges as only by making present what is involved in living in a subjugated position can one change the representation and hopefully the material and symbolic reality too. ‘Individual’ simply overrides this. I believe these arguments about how to name oneself or one’s group and what flows from this can apply here, on the terrain of madness. I choose that term—madness—because of its political resonance but am not committed to it and in the final chapter I will ask ‘who counts as mad?’ In sum ‘naming’ yourself or a group is a political act as it triggers certain other associations, oppositions, situations and connotations but in a fluid way. ‘Individual’ is not set in a mental health space at

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all or any particular space. It is the ultimate norm in modern times. Safe language is typical of user groups who wish to collaborate with professionals and strong language voices a desire for radical change in the politics of mental health, itself an unacceptable statement for something that is supposed to be ‘apolitical’. Strong language highlights, does not cover over, the harms and the hurts experienced by so many. To avoid it is to avoid that aspect of people’s lives. It is dismissed as ‘political’. As if being political is not in play in mainstream knowledge itself.

Experts and How Should We Talk to Them? In the industrialised West the ‘experts’ in mental health are largely the doctors, other ‘psy’ professions. educators and faith leaders. Outside psychiatry it is usually a matter of ‘us’ and them’ variously positioned in everyday life and in the media. People with intersectional identities have a more complex path to navigate and, indeed, mental health may not be their primary form of identity. In psychiatry, doctors often sustain their position and thus their boundary by not listening to what people say. Omission is a tactic of power. If a service user is trying to explain the circumstances of their lives including adversities such as poverty or racism, the fear that their child will be removed by social services or that their partner is hurting them, this is all grist to the mill of the diagnostic category, formalised by being recorded in the notes. The person’s life is bounded by the system of diagnosis and their experience is not heard or is heard through the discourse of psy. This is no secret, not being listened to is ubiquitous and some people just put up with it. Others cease to say very much at all. But there are other strategies you learn. For example, ‘PsychSpeak’ is an ironic and hidden form of distancing which looks like it is talking the same language as professionals but is subtly undermining that position. Or people may try to frame their life story, their experience, in safe terms because they believe that then they will be listened to, will be included in the world of the normal or nearly so. Service users (some of them) learn to speak in a way that is suitably reverent in the doctor/patient relation. On the other hand, a response may be to get angry—which has its pitfalls such as an increase in your medication dose

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or having a service withdrawn. Another way to cross back from being abnormal to being nearly normal lies in trying to frame a life story in safer terms to achieve something you do want. For example, in one study people who had been involuntarily detained and treated spoke of ‘playing by the rules’ during focus group discussions. What this meant was that their real objective was to be discharged and so they gave an account of themselves, edited and diluted, that corresponded with being a person ready for this (Katsakou et  al., 2012). Experience can be variously inflected depending on settings and relationships. Multiple boundaries are involved in such strategies, and they are by no means confined to treatment spaces. And when this is coupled with other marginalised groups, such as racialised or non-heteronormative ones, the boundaries are both different and stronger. Nonetheless new knowledge and supports, it seems, will spill over these divisions as resistance may be generative (Glass, 2003). There are examples in the project focussing on knowledge-makers of people making analyses of their situation completely outside formal education or formal services, on the streets, practical analyses that entail forms of support. There are various ways of talking to mental health professionals or, in this case, at a complete tangent to them. Rarely are they a direct expression of ‘experience’, whatever that would be. Sometimes it is an explicit strategy, other times it is drawing on tacit knowledge. What you call yourself is central here. You may call yourself a ‘patient’ or simply avoid referents if the objective is to get something from the doctor or represent yourself as ‘compliant’.

The Move to Lived Experience Just recently, the terms ‘person with lived experience’ or ‘lived experience researcher’ or ‘experts by experience’ have gained traction in the industrialised West. The origins of these terms seem lost in the mist of time although ‘experts by experience’ seems to have come first. One driver for it to expand in the UK lies at least in part in an NGO there called ‘McPin’. This is a non-user-controlled space supposedly putting ‘lived experience at the heart of research’. I have mentioned this before and that the most significant meaning in this strapline refers to participants in trials. In

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Australia, it seems this was a deliberate choice because of problems with the term ‘consumer’. From a personal point of view, I did not make myself popular when I was appointed to a Government Committee and we were told there would be a ‘lived experience Deputy Chair’ for each sub-group. I did blurt out: “what would a person without lived experience be? Dead or in a coma”. They changed the title at that meeting but the phrase had caught on (Roennfeldt & Byrne, 2020). Neutral terms are usually easier—primarily for non-survivors. They become neutral and normal through repetitive use. But they are also easy because they do not disturb the status quo too much. If one takes the leap from ‘lived experience’ to ‘survivor’ you are changing the field of contention, knowingly or not. A related issue is that superficially ‘safe’ terms related to experience imply that psy and user researchers make natural bedfellows; there is no dissension and we can proceed in a collaborative way, always remembering the professionals are professionals (‘experts by profession’ some say). These terms, and ‘lived experience researcher’ is one, signify that the bearer is happy to do ‘collaborative’ work and sees few obstacles. I put ‘collaborative’ in scare quotes because this is incredibly difficult to achieve as argued in the last chapter (Williams et  al., 2020). This is not to argue which position is ‘right’ but to demonstrate that language bears legacies and connotations that affect practice— research or otherwise. Power figures here centrally—the different terms and their historical and spatial placements are all in one way or another trying to alter power relations—or at least that is what is said. For example, a current popular term clinically is ‘shared decision-making’ which I have mentioned already (Coulter & Collins, 2011). To put it more strongly, this is clearly nonsensical as long as we have a Mental Health Act. This use of the word ‘shared’ is obfuscating; the two parties certainly do not ‘share’ experience—this is power embedded in language. Note that I am not claiming that professionals are self-consciously undermining of survivors. It is the structure of the relation—patient and doctor— embedded in psychiatric discourse that nearly always trumps that of survivors, quite apart from the fact that the range of ‘options’ available are decided by the professionals in advance (Adams & Drake, 2006). ‘Supported decision-making’ may sound similar but is almost the opposite and sits in the discourse of the CRPD (Roper, 2018). This is an

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instance where the names or phrases contradicts what I have been saying because the distinction between ‘shared’ and ‘supported’ is only available with a lot of background knowledge. Otherwise they seem quite close semantically. It doesn’t always work and discrepancies are important. As to the other terms I listed earlier, the last three are attempts to reclaim some older and apparently demeaning terms for mental illness by using a touch of dark humour: but ‘loony’ and ‘barking’ are reserved for an in-group (Landry, 2017). Used by others, they remain insults. I will sometimes use the term ‘mad’ in this sense of reclamation. Why so much space for the little matter of naming? In addressing, briefly, the changing cartography I am drawing again on the interview study. Practically no one replied to the question about naming with just one word or phrase. A majority of the answers were long and sophisticated—participants knew this was an important question, often talked about tailoring words to settings, using language that is not too unsettling where collaboration is wanted, for example, but much stronger language in the planning of an event. Or citing a piece of legislation which had a dramatic effect on language and on practice. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) fixed the term ‘Rights’ and a discourse of rights with people in distress renamed as ‘persons with psychosocial disabilities’. And consolidating or fixing this language is part of consolidating concepts and institutions. Or attempts to do this. Another aspect of this focus on context can be gathered from written descriptions. There are instances where people have a title—‘user researcher’, ‘consumer academic’, ‘CEO of (user organisation)’—but their biographies speak to something far more radical. This is the kind of ‘instability’ I referred to at the start but there are reasons for it that are strategic. The distinction between title and biography opens a space where advocacy and activism as well as very different thinking can be present even if their ‘title’ is apparently descriptive and approaching the ‘acceptable’. I would suggest that the different mainstreams actually do not know what to make of us at the moment, so this instability is conveying the complexity both to achieve things and to represent ourselves as, collectively, how we want to, which is diverse. It certainly cannot be reduced to raw ‘experience’ although of course this has a place. From here we should bear these issues in mind but also realise that there is no ‘perfect’ term, no universally applicable term.

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Activism and Knowledge-Making It may have been noticed that some names for research or researchers are prefaced by names for activist groups—user researcher and survivor researcher in particular. These tie research to activism and a drive for change. However, other names etiolate that link—lived experience researcher and researcher by experience are examples. This overlaps with what I have been calling ‘strong’ and ‘soft’ language and the argument that ‘softer’ terms indicate less challenge and more of an association with a willingness to ‘collaborate’ in a way that is seen as unproblematic. Another term in increasing use is ‘peer’ researcher but it is unclear what ‘peer’ refers to. Sherry Mead’s Intentional Peer Support is prized amongst some as a form of support that challenges those of the mainstream (Mead et al., 2013). But I have already indicated that ‘peer’ has many meanings and the original idea of supporting each other outside of services has slid into the notion of the ‘peer workforce’ which I have argued is a form of co-option. I shall have more to say about ‘peers’ in the next chapter. This means it is time to pay more attention to the idea of ‘experience’ itself, its benefits and drawbacks, so that we can understand how such researchers are positioning themselves and the ideas and projects they are generating. As I have said, this is not cut and dried because words have multiple meanings and what is ‘done’ through these positions cannot be assumed in advance. So we must flesh it out some more.

Conclusion Linguistic analysis is not everyone’s favoured approach but I have tried to argue that ‘what’s in a name’ is important for understanding what is going on in this field, however unstable. Certainly participants in the interview study and in other studies I have done talk at length about what and how we should call ourselves. They know this matters and also that it is not a matter of ‘description’ but of arguments about our history, our actions and how we make new knowledge and enact it. Since ‘experience’ figures here so strongly, and also has in survivor writings for half a century, it is time now to turn to an analysis of that term.

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References Adams, J. R., & Drake, R. E. (2006). Shared decision-making and evidence-­ based practice. Community Mental Health Journal, 42(1), 87–105. Andrews, E. E., Forber-Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C. R., & Balter, R. (2019). # SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64(2), 111. Beresford, P. (2018). Service user involvement in social work and beyond. Exploring its origins and destinations. Zeszyty Pracy Socjalnej, 23(1), 5–20. Beresford, P. (2020). PPI or user involvement: Taking stock from a service user perspective in the twenty first century. Research Involvement and Engagement, 6(1), 1–5. Beresford, P., & Russo, J. (2022). The Routledge international handbook of Mad Studies. Routledge. Byrne, L., Roennfeldt, H., Wolf, J., Linfoot, A., Foglesong, D., Davidson, L. and Bellamy, C. (2022). Effective Peer Employment Within Multidisciplinary Organizations: Model for Best Practice. Administration and Policy in Mental Health and Mental Health Services Research, 49(2), 283–297. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. McGraw-Hill. Christmas, D. M., & Sweeney, A. (2016). Service user, patient, survivor or client… has the time come to return to ‘patient’? The British Journal of Psychiatry, 209(1), 9–13. Cooke, M. (1997). Language and reason: A study of Habermas’s pragmatics. MIT Press. Coulter, A., & Collins, A. (2011). Making shared decision-making a reality. King’s Fund. Croft, S., & Beresford, P. (1995). Whose empowerment? Equalizing the competing discourses in community care. In Empowerment in community care (pp. 59–73). Springer. Danius, S., Jonsson, S., & Spivak, G.  C. (1993). An interview with Gayatri Chakravorty Spivak. boundary 2, 20(2), 24–50. Devaney, J., Costa, L., & Raju, P. (2017). More than paint colours: Dialogue about power and process in patient engagement. Toronto: Empowerment Council. Faulkner, A. (2017). Survivor research and Mad Studies: The role and value of experiential knowledge in mental health research. Disability & Society, 32(4), 500–520.

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Frese, F. J., & Davis, W. W. (1997). The consumer–survivor movement, recovery, and consumer professionals. Professional Psychology: Research and Practice, 28(3), 243. Gilroy, P. (1988). There aint no black in the Union Jack. Routledge. Glass, L.  L. (2003). The gray areas of boundary crossings and violations. American Journal of Psychotherapy, 57(4), 429–444. Guenther, K. M. (2009). The politics of names: Rethinking the methodological and ethical significance of naming people, organizations, and places. Qualitative Research, 9(4), 411–421. Katsakou, C., Rose, D., Amos, T., Bowers, L., McCabe, R., Oliver, D., Wykes, T., & Priebe, S. (2012). Psychiatric patients’ views on why their involuntary hospitalisation was right or wrong: A qualitative study. Social Psychiatry and Psychiatric Epidemiology, 47(7), 1169–1179. LaCapra, D. (2004). History in transit: Experience, identity, critical theory. Cornell University Press. Landry, D. (2017). Survivor research in Canada: ‘Talking’recovery, resisting psychiatry, and reclaiming madness. Disability & Society, 32(9), 1437–1457. Lanehart, S. L. (1996). The language of identity. Journal of English Linguistics, 24(4), 322–331. LeFrançois, B. A., Menzies, R., & Reaume, G. (2013). Mad matters: A critical reader in Canadian mad studies. Canadian Scholars’ Press. Lofthus, A.-M., Weimand, B. M., Ruud, T., Rose, D., & Heiervang, K. S. (2018). “This is not a life anyone would want”—A qualitative study of Norwegian ACT Service users’ experience with mental health treatment. Issues in Mental Health Nursing, 39(6), 519–526. Lyon, A. S., & Mortimer-Jones, S. M. (2020). Terminology preferences in mental health. Issues in Mental Health Nursing, 41(6), 515–524. McWade, B., Milton, D., & Beresford, P. (2015). Mad studies and neurodiversity: A dialogue. Disability & Society, 30(2), 305–309. Mead, S., Kuno, E., & Knutson, S. (2013). Intentional peer support. Vertex (Buenos Aires, Argentina), 24(112), 426–433. Metzl, J. M. (2010). The protest psychosis: How schizophrenia became a black disease. Beacon Press. Ochocka, J., Janzen, R., & Nelson, G. (2002). Sharing power and knowledge: Professional and mental health consumer/survivor researchers working together in a participatory action research project. Psychiatric Rehabilitation Journal, 25(4), 379. Puras, D. (2017). Statement by Dainius Puras, Special Rapporteur on the Right to Health. Geneva: UNOCHR.

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Roennfeldt, H., & Byrne, L. (2020). Lived experience researchers. In Social research and disability: Developing inclusive research spaces for disabled researchers, 52. Roper, C. (2018). Capacity does not reside in me. In A. Carter (Ed.), Critical perspectives on coercive interventions (pp. 85–96). Routledge. Rose, D. (2017). Service user/survivor-led research in mental health: Epistemological possibilities. Disability & Society, 32(6), 773–789. https:// doi.org/10.1080/09687599.2017.1320270 Russo, J. (2012). Survivor-controlled research: A new foundation for thinking about psychiatry and mental health. Paper presented at the Forum Qualitative Sozialforschung/Forum: Qualitative Social Research. Scheper-Hughes, N., & Lovell, A. (1987). Psychiatry inside out: Selected writings of Franco Basaglia. Columbia University Press. Scott, J. W. (1991). The evidence of experience. Critical Inquiry, 17(4), 773–797. Searle, J. R. (1985). Expression and meaning: Studies in the theory of speech acts. Cambridge University Press. Sexton, A., & Sen, D. (2018). More voice, less ventriloquism—Exploring the relational dynamics in a participatory archive of mental health recovery. International Journal of Heritage Studies, 24(8), 874–888. Spivak, G. C. (1988). Can the subaltern speak? Springer. Spivakovsky, C., Steele, L., & Weller, P. (2020). The legacies of institutionalisation: Disability, law and policy in the ‘Deinstitutionalised’ community. Hart Publishing. Stuart, H. (2008). Fighting the stigma caused by mental disorders: Past perspectives, present activities, and future directions. World Psychiatry, 7(3), 185. Thornicroft, A., Goulden, R., Shefer, G., Rhydderch, D., Rose, D., Williams, P., Thornicroft, G., & Henderson, C. (2013). Newspaper coverage of mental illness in England 2008–2011. British Journal of Psychiatry, 202(Suppl. 55), s64–s69. https://doi.org/10.1192/bjp.bp.112.112920 Williams, O., Sarre, S., Papoulias, S. C., Knowles, S., Robert, G., Beresford, P., Rose, D., Carr, S., Kaur, M., & Palmer, V. J. (2020). Lost in the shadows: Reflections on the dark side of co-production. Health Research Policy and Systems, 18, 1–10. Winter, S., Diamond, M., Green, J., Karasic, D., Reed, T., Whittle, S., & Wylie, K. (2016). Transgender people: Health at the margins of society. The Lancet, 388(10042), 390–400.

7 Experience: What’s in a Foundational Category?

Background The term ‘experience’ as such is everywhere from philosophy, phenomenology, linguistics to psychology, not to mention everyday life. Indeed, experience is one of those words which ‘everybody knows what it means’—until it becomes a foundational category for understanding. This is an important distinction. Here, at a conceptual level, ‘experience’ is deeply connected with empiricism and post-positivism (Magee, 1974; Popper, 2013). I guess most anti-positivists would not welcome this statement. That is partly because, again, the term has changed in meaning. In empiricism, dating from the nineteenth century, it stands for ontological realism and a method to discover (or falsify) new knowledges. But it stands in an epistemological debate which is entirely outside the scope of this book—does sense data (empiricism) provide all grounds for knowledge or are there pre-given categories which function as the conditions for any knowledge at all (rationalism). Here ‘sense data’ can stand for ‘experience’ but that would be to say that our experience is a direct reflection of sensory information. Is this what is meant? I have suggested that service users are asked to ‘bring their © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_7

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experience’ into research so the term is obviously more than sense data when used like this. A further factor is that questions of truth are focused on the individual; knowledge-making is an individual pursuit. I can perhaps illuminate this with a personal story. I was part of an interview panel for the post of Research Assistant in a psychology project. One candidate spoke at length about epistemology which both surprised me and made my ears prick up. But as the interview developed, I realised that for this candidate ‘epistemology’ meant enquiries about how individual people think, especially with respect to truth. Having spent some years reading critical theories, I was actually unaware that the correct agent for epistemology in the Western Academy was the individual. I had been used to reading about marginalised groups creating knowledge in group settings and I had no idea the word usually referred to individual cognition. So right at the heart of the defence of dominant ideas, I had missed it—the bit that told us that epistemology is a field populated by individual thinkers. And not groups. ‘Standpoint theory’, post-colonial movements, from gay to queer: these make ‘experience’ central to knowledge-making but it is a collective experience that is produced by discussion, sometimes art and reflection. I will now examine some papers which have tried to theorise ‘lived experience’ in health spaces and we shall see a big difference between professionally authored papers and those written by survivors including in terms of what kinds of people participate in involvement activities in research and beyond. As explicated in Chaps. 3 and 5, the criteria for ‘who’ is involved in knowledge-making have changed over the years and particularly for mental health service users. The question arises of who is a legitimate knowledge maker? The changes, which seem superficially simple, actually implicate how ‘experience’ is positioned in these movements, what the objectives and reasons are for making it a central category. Relations are vital not just theoretically but practically so I will finally look at people in groups—the advantages and disadvantages of collective work but also at links between different survivor strategies particularly in terms of identity and subjectivity. The title of the chapter is meant to indicate that for many it is their ‘personal experience’ or ‘lived experience’ that is the root of their analyses of their own and others’

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predicaments. There is an enormous literature on ‘experience’ and it is diverse in use. This will be less a polished chapter than an excavation. But just to emphasise, ‘experience’ is a term in common use—we all know what it means or think we do. But in this chapter I will look at situations when the term ‘experience’ is used as a central organising category in the field we are looking at. The fact that it is the ‘same word’ does make for confusion.

Examples from the Literature Along with the general rise of references to ‘lived experience’, some researchers have offered theoretical bases for its importance in the world of activism and knowledge-making by people with psychiatric labels. I will describe three that I find problematic then a fourth that is a clearer and more challenging argument. However, it is here that we must be careful. I refer to the distinction between ‘experience’ as an everyday word that everybody understands, or thinks they do, and the use of a concept of ‘experience’ as a foundational category of understanding a field such as madness from a critical perspective. Many writings do not make this distinction but swivel between the two meanings. This may be deliberate to emphasise that ‘experience’ is a grounded concept unlike many research ideas. But this is not made explicit. Conversely, that ‘experience’ is a term in everyday use may protect it from interrogation at a conceptual level. But first let us see what these ‘theorisations’ look like. First, arguments around experience may include ideas about the depth and generation of knowledge (Noorani, 2013). As well as saying that shared survivor experience is the basis of shared and new knowledge, Noorani proposes a special category of experience: Deep Experiential Knowledge (DEK). For Noorani, ‘experience’ is first used in its everyday sense but then some special forms of experiential knowledge are marked off as central concepts. Noorani suggests that self-help groups are the starting point for the development of DEK. Claiming this as a robust and collective form of knowledge, generated over time as more experiences accumulate in a group and long-term members (‘old-timers’) become the

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custodians of this. DEK is brought about through group discussion and reflection and sharing individual stories until a form of knowledge distinct from the mainstream develops. This takes time as the phrase ‘old-­ timers’ implies. He argues that DEK is layered as it develops from different individual stories. However, Noorani also argues that DEK is the central epistemological fulcrum for theorising lived experience. Despite the attention to layers this does seem to fall into tautology: coming from a perspective of experience is itself what legitimates and confers authority on experiential knowledge. Which sounds like: lived experience legitimates lived experience! The difference is in attending to different layers of knowledge and the epistemological argument hangs on the assertion that DEK is the most sophisticated knowledge that can be positioned as an organising concept in change making in mental health. For mental health is his domain. Often references to ‘experience’ are without content but other arguments tell you what the content is. And in this literature it is almost all health, narrowly defined. Noorani pits experiential knowledge against Evidence-based Practice (EBP) and he envisages a triumvirate of ‘research, EBP and experience’ to successfully tackle problems in practice or policy. He is aware that experiential knowledge has less influence than the others and argues that elevating DEK would lead to better services. “Attending to DEK helps untangle some of the challenges posed by evidence-based practice for and to successful service user involvement” (Noorani, 2013, p. 3). Apart from an observation that user groups sometimes split, there is no reference to power or even disagreement in the analysis. Jijian Voronka, by contrast, argues that foregrounding experiential knowledge risks the development of a negative form of Strategic Essentialism. This takes place where differences are elided and it looks as if people are talking with one voice. It is ‘strategic’ because claiming unity may help a cause. On the other hand, important political and individual differences are erased (Voronka, 2016). There is also not a single reference to power in Noorani’s article or even to debate and dissent, although participants themselves in the empirical part of his argument often describe a journey where their experiential knowledge is deepened and rendered more complex at each stage.

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The tension between individual and group and the function of each is discussed too and illustrated. In brief, it reads as a positive and linear development moving from individual experience to collective experiential knowledge to DEK—a process described as having few problems and amenable to collaborative working with professionals as well as between peers (Storm & Edwards, 2013). Again, this position clashes with arguments about epistemic injustice where oppression is based on dominant knowledges that are unlikely to compromise in such a smooth fashion with a focus on experience, especially questionable experience (Laitila et al., 2018). Voronka is treating ‘experience’ as an organising concept, whereas Laitila and colleagues’ work on trauma is more closely tied to everyday understandings of the idea. Bluntly put, I do not think the transition from ‘experience’ to codified knowledge is simple at all. There is, within survivor writings, a disjuncture between writings based on everyday experience and more theoretically oriented literature (compare qualitative research on trauma with Voronka’s work on strategic essentialism referenced above; Campodonico et  al., 2021). I do not mean there is anything wrong with qualitative work on issues such as trauma. But we are limited to a list of descriptive studies with no way of tying them together and synthesising them unless there is a deeper interrogation of what is meant by ‘experience’ rather than just repeating the word. Noorani tries to make the transition from individual story to DEK a smooth one but at the expense of absenting references to power and epistemic injustice. There is also a problem with the direction and linearity—individual comes first temporally and then collective knowledge results. I shall pick up this point at the end of this chapter. The second paper, by Näslund, supplies a more sophisticated theorisation by acknowledging the power inherent in any group and advocating the development of a ‘Standpoint’ position (Sandra Harding, 1992; Näslund, 2020). Despite a thrilling title, her theorisation seems to be that knowledge is more valid if it has a wide base and she believes this is being approached. The ability to disseminate this knowledge is important too. She points to ‘ambiguities’ which is interesting but not developed. The paper includes a literature review and interviews with members of user groups and survivors who work for themselves to argue that experiential knowledge can be individual or collective including at the level of

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articulation or expression. She also argues for ‘complementarity’ of experiential knowledge with mainstream practice. In this she concurs with Noorani. The development of a cadre of ‘Service User Entrepreneurs’ (‘SUEs’) she sees as fairly recent and is aware of the individualisation at many levels brought about by neoliberal policies. In the interviews, the participants make strong cases for collective knowledge but in terms of research or policy making, people feel that they are relegated to the ‘this is my story’ slot at conferences and workshops and are angry that they are positioned only to tell individual stories and not as knowledge-makers as such. The stories also have a kind of ‘template’ and are usually stories of recovery (Costa et al., 2012). They often elicit a kind of patronising applause. The participants, particularly the SUEs, say that telling individual stories does bring forth emotion or sympathy from an audience, but this story-telling is both ‘required’ in the Global North today and required in a particular form. Again, such a template risks that such a discourse will be divested of references to different identities and powers. Noorani believes that integration of DEK is possible and positive. However, is it not equally likely that it will be rejected or co-opted (Hansen et al., 2004; Lundberg et al., 2013)? DEK itself aims for consensus in knowledge in the group and also invites collaboration. I do not think either can be taken as givens. It may be that a common goal gives rise only to small changes in the direction users want because epistemic injustice will dilute the power of DEK when interacting with authorities whom you may be trying to influence. The two papers, especially Noorani, are both coming from a perspective of changes in health care and this is represented as fairly easy when all stakeholders have equally valued knowledge. The point of critical theories is that these knowledges are not equally valued as I have repeatedly claimed. Exactly how do we ‘bring experience’ into mainstream knowledge-making and practice when it is often called ‘subjective’, ‘anecdotal’ or ‘mere opinion’? This question is not raised but it is central and it calls for the ownership of power. Judi Chamberlin, after a lifetime of work centring survivors acting ‘On our Own’, made this the condition for collaboration. It is very complex and includes power asymmetries between knowledges and how they are generated, not just persons or groups (Chamberlin, 2005).

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In the third example, Castro and colleagues offer what they call a ‘concept analysis’ of experiential knowledge arguing that such analyses are lacking in the literature (Castro et al., 2019). A temporal dimension is introduced to the analysis: Antecedents/Attributes/Consequences. They argue that important antecedents of meaningful knowledge-making and practice start at the level of an individual confronting a health issue and all the social circumstances around it. The individual then becomes an expert in their own condition; they must also have or acquire some specific ‘competences’ including being able to transfer their insights to others. An ‘open attitude’ is asked of all. When such people meet together, they realise that their predicament is shared by others, or elements of it are. They have formulated their own story about their health conditions but meeting with others and hearing stories from others who either concur or have differences broadens the knowledge base. To hear from the experiences of others as their stories are recounted means that the totality of these stories is what constitutes collective knowledge. But they write as if collective knowledge is the ‘sum’ of individual experiences rather than exceeding the experience of any individuals who are participating or dealing with any differences especially those that involve power. Once again, using ‘experience’ in an everyday sense can be used to avoid interrogating it as a foundational category in an argument. The consequences in this model are all to do with interactions with professional groups, particularly psychiatrists and policy makers. The development of experiential expertise and its inclusion in services and policy making means that the work to develop such experiential expertise can and should act as ‘quality assurance’ for a project or programme and lead to better services at both an individual and a policy level. Although the article shows awareness that experiential knowledge is currently undervalued, the belief is that this will change and it will have the same status as that of clinicians and researchers. So once again we have a picture of smooth and easy progression of this type of expertise into the mainstream. And I would argue again that this is made possible by treating ‘experience’ as an unproblematic and everyday concept and in this case downplaying that experiences may conflict, not just in terms of content but epistemically, and the question of whose supervenes.

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Castro and colleagues’ analysis is not specifically a mental health paper but it includes mental health. The concept analysis is rather thin—not really going beyond the duality of individual and collective knowledge and how the former is the basis for the latter. But, as I have said, in a simplistic fashion. It is also unclear to me that ‘individual experience’ does come first (temporally or even ontologically) and I shall return to this. The paper does, however, attend to some aspects of power and stigma. This is relevant because it is totally confined to the medical field from mutual support to knowledge-making at a policy level. Grounded in questions of involvement and dissemination, they further model collective knowledge on the clinical encounter as if organisational knowledge and practice can be treated in exactly the same way as an individual clinical relationships. I have already argued that mental health is a specific case here because collaboration can be fraught with difficulties. In all three papers just described, integration of collective survivor knowledge into clinical and research knowledge is situated in the field of health with no attention to context which always includes factors seen as ‘external’ to health. This ‘stripping of context’ has been emphasised at length already and will be a strong theme in the chapters to follow. It is a condition of the individuation of those in contact with mental health services and beyond. It certainly poses questions for what concept of ‘experience’ is being used here and how. For it is often not just the everyday but the everyday of individual illness. Noorani, Näslund and Castro are just three authors who have attempted a conceptual analysis of ‘lived experience’. I selected them partly because they are recent. In my view, these are not particularly compelling papers; they are not the first to trace the journey from individual to collective knowledge via shared experience. The importance of these arguments to this book then is that ‘experience’ as an organising discourse, especially in psychology, may come into conflict with a commitment to change, a focus on marginalised peoples and a set of collective values; a collective ‘standpoint’. We have standpoint epistemology, for example, from a feminist perspective (Sandra Harding, 2004). The context in which the term sits can tell us more. In particular, for these authors, the context is health and health only. The majority of Näslund’s interviewees see their relation to mainstream health practices as

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‘complementary’. This disavows that the form of the knowledge as such is different, epistemically different, to mainstream empirical research. This difference can be elided when the status of the concept of ‘experience’ swivels between two meanings, the everyday and the foundational. It also avoids addressing the exact mechanisms by which ‘experiential knowledge’ is supposed to enter the space of research. A common approach is advisory groups as noted in the last chapter and I turn to these soon. As far as I know, none of these authors is a service user or survivor. The fourth example comes from someone who is a survivor and I would argue that, in this space, she attempts to supply a ‘missing link’ (Faulkner, 2017). The move from individual to collective knowledge and analysis is weakly specified in the other papers but Faulkner spells out a means by which this can happen. That ‘means’ is peer support. Noorani and Castro both talk about ‘mutual support’ but although there is an overlap they are not the same and are positioned differently in the arguments. In peer support, people who share experiences can talk about them supportively but also analytically and reflexively and so generate new knowledge. It does not have to be for ‘involvement’ purposes—it stands by itself. And it does not need to be about health, anything that touches users’ lives is relevant including topics mainstream writers shy away from such as domestic violence and hate crime (Lambert & Carr, 2018; Rose et al., 2011). However, the temporal and ontological primacy of the individual remains. Faulkner’s ideas do have implications for involvement activities though. In many contexts if there is ‘involvement’ the knowledge generated by peer support will be challenging partly because it challenges the idea that all survivors can do is ‘tell their story’. Stories are important but can’t just be a collection of individual ones; something new arises when people come together and swap ‘experiences’ such that a rich analysis can develop. Collective knowledge is thus a step change because of how it is generated. Experiential knowledge is complex and layered and takes time to acquire and then to transform into experiential expertise. But this is a descriptive statement, even compatible with Noorani, and it is not articulated together with other central categories, such as peer support. Faulkner also does not underestimate the emotional labour involved in peer support, a point again made by Voronka (Voronka, 2017). But survivor knowledge

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has never been value-free. It has always involved passions. At least survivors are explicit about this because all research involves investments and values, but they are kept firmly under ground. They abound in the actual doing of mainstream research though as I have argued elsewhere (Rose, 2019). I do not think it is an accident that the most robust and challenging analyses come from survivors. It is partly a rebuttal of the idea that we cannot think. But it also shows what matters to survivors, what they wish to change and how to organise this. In the analytical domain, Faulkner herself believes that Mad Studies, mentioned before, is the new discipline for this kind of work. She is not alone (Jasna Russo & Beresford, 2015). I am more cautious because proponents of Mad Studies argue that it goes beyond critiquing psychiatry, and I am yet to be convinced. But Faulkner’s analysis is an example of going beyond critique and proposing innovation. At the same time, it has implications for research. Various studies have ‘Lived Experience Advisory Groups or Panels (LEAGs and LEAPs)’ which I touched on in the last chapter. Their role is often not clear (Slade et al., 2010) or the two are misaligned. Inevitably, the main project that the group is ‘advising’ will select what suits it and disregard or ‘not hear’ what does not. Faulkner’s ideas might provide some principles of who should be in such a group for a particular study, the importance of relational work and practical issues such as time and money. But how experiential knowledge is supposed to become part of research is left unexplained. And this is possible when it is treated as an ‘ordinary’ category. It is also possible because such groups tend to meet very infrequently and they are presented with a summary of the research so far and invited to comment. There is little space for them to present anything completely fresh and thus anything radically critical. And often they carry the entire responsibility for the ‘experiential’ part of a study—it is not integrated into the main research and its methods. And we have seen that these methods and the underlying epistemology are deeply problematic for the kinds of work we might want to do. The agenda is set in multiple ways–by the research team (as well as it being one of those ‘meetings’). I think it is vital that there are networks of people involved, however strongly or loosely, in research that can inhabit their own space completely and have frank and broad discussions about topics under

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investigation and how they are being investigated. Because we are not the ones making the choices here. These do exist: The Survivor Research Network attached to NSUN in England; the international ‘User/Survivor Listserve’ organised from the USA; the bi-annual ‘Service Users in Academia’ conference in Australia. As ever, they are underfunded, depend on a lot of free labour and yet are more innovative than groups attached to particular studies—these are not mutually exclusive of course. Mainstream research is a tie that binds and we need to break free. I return to this in the concluding chapter without denying the reality, explained in Chap. 5, that we will have to work with others much of the time. For now.

Whose Experiences Does Research Need? This brings me to another point, linked to the arguments above. We saw in Chap. 4 that many systematic reviews and other papers suggest ‘training’ as a necessity for service users who wish to be involved in research. But it must be emphasised that it is the lay members that need to be trained for it is they that are lacking. What are they lacking? Research skills and the culture of research. This leaves the academic or NGO researchers unperturbed in their status and skills, it is just a question of transmission of methodological techniques delivered by an ‘expert’. This kind of activity has also been written about in terms of its benefits but more importantly its disbenefits for researchers such as money, time and reputation (Oliver et al., 2019). These are disbenefits for the researchers who are supposedly the experts here. But what if a collaborative piece of research centres something else? That ‘something else’ is the collective knowledge patients and the public have of their own lives as living with certain conditions and supports across the board—their ‘experience’, we could call it although certainly not in a descriptive sense and also not privileging individual experience. This would enter enquiry at a completely different level. And not just to ‘add to the jigsaw’ but to put in question the way research is conducted. At least to say that mainstream research is only one way of making knowledge. In this account, people’s experience would be the unique contribution to research and of as much value (or not) as

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RCTs. The public would of course need an understanding of research in order to question it. But so would researchers need familiarisation with the world of survivor knowledge-making and action and its limitations, including the limitations set by the mainstream research establishment. This rarely happens, as the two worlds are sailing past each other, and the agenda is set by researchers. Ironically, this means that ‘the lay public’ are actually doing more work than the professionals who are comfortable with their world. There is also caution that too much training will loosen grassroot groups’ informality and turn them into pseudo professionals. But the problem, as I see it, is not those who know about research but replacing them with people who then are going to be taught about research and how this is done. Usually it will be through a short training course, whereas the mainstream researchers have often been educated about this for seven years or so. It is likely to be a ‘how-to-do-it’ course lacking any critical thought. In fact, those survivors who know about research need to think about what to stand back from, about the implicit assumptions in what they know. Otherwise even user-led research will repeat some of these assumptions as well as take mainstream research as a model of some sort. But again no counsel of despair because we can see that this is happening, at least I am trying to surface that it is happening, to draw the attention of a wider group to the activities that are going on. The temptation, for professionals, is to co-opt or ignore or ‘misunderstand’. Or frankly block. Of course this is not written down and my own experience of it might be particularly bad. But reading between the lines, I don’t think so (Dickinson & Glasby, 2010; Rutter et al., 2006). I am going to end this book with some ideas for a vision that I promised in the Preface—turning the mainstream on its head and some of these points will be developed.

Mental Health Specifically But we need to be clear too about other kinds of obstacle and challenge them. When it comes to research in mental health, and even more in practice, there is an inordinate hurdle. For the most part, as we have seen, the ‘experience’ of those deemed mad is not to be trusted and is largely

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approached as a set of symptoms. The language of experience, collaboration, involvement and coproduction cannot work if one party to the research is flawed in the very thing that brought them to the research space. The ‘experience’ of the mentally ill is ‘out of touch with reality’. This poses serious problems for ‘experience’ as a foundational category and must be tackled. We can see this at work in the readiness to dismiss contributions that are judged ‘inappropriate’ and to attribute pathology as well. This was clear in an ethnography of user groups I conducted with others (Rose et al., 2016). So, whilst the idea of service users bringing something unique to a project is appealing, we have to be careful about what that ‘unique’ attribute is. It is the knowledge gained through living with a condition or set of conditions, all that goes with it, talking with peers about it and sometimes codifying it. But such is not common at all. I would argue that the term ‘lived experience’ in mental health research and practice, whilst inclusive at best, can be self-defeating. In medicine generally there is a hierarchy and the ultimate goal is to benefit the patient. But if the person’s ‘lived experience’ cannot be relied on or is seen as untrustworthy, anecdotal and subjective, then it is not going to be accorded much influence until and unless they become ‘normal’. This is a real tension for people occupying such positions. If ‘lived experience’ is pictured this way, by others, then it is going to be extremely difficult to make progress. ‘Research’ and ‘mental patients’, as researchers, are formulated in different registers, different languages, which collide. So, if this term is becoming frequent, it is bringing baggage with it. If we enter it into the lexicon of cooperation, collaboration, engagement and shared decision-making, it simply does not fit the goals of empowerment or equity or social justice in research. Power can inhere in method, but it is assumed that training survivors up in research skills or research ‘etiquette’ will fix the problem. There is very little literature on training professionals in experiential knowledge and that is an enormous gap. So the concept must be doing other work. By situating it in the world of co-everything, by pointing out its strengths in terms that fit the safe narrative, by pursuing goals that entail very little change and by populating it with articulate, well turned out members of the public, the word ‘experience’ starts to take on the connotations of the other terms in the

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safer narrative. This raises certain other questions but my conclusion thus far is that the term ‘lived experience’ is consistent with a non-combative and sanitised definition of mental distress. This is not to deny that people want to be normal (whatever that is at the time) or do normal things but in order to participate in the world of ‘involvement’ they must, ironically, shed much of their ‘experience’. Because it seems that only certain types of experience are admissible, or only certain stories will do (Landry, 2017). So there is a structural problem—how is ‘experience’ going to be incorporated in research—and an ideological one—how is ‘experience’ going to be equivalent status to mainstream research? And both hinge on what is meant by ‘experience’. I should say that some people use this term perfectly aware of these connotations and legacies and use it as a matter of convenience—strategically.

Diversity In the light of this, we can return to the ‘who’—who is involved in research? It is no secret that people who are involved in research in mental health are drawn from narrow groups in society. I have spelt it out already. They are almost exclusively white, most are women, many middle aged and retirees with time on their hands. I described this at length in the Chap. 5 but it is now an issue that many institutions are preoccupied with, including research organisations (Healy, 2015; Prussing & Newbury, 2016; Staniszewska et al., 2018). The optics speak for themselves (though some don’t speak at all). One common answer to this issue is to try to ensure that different groups are all represented at meetings, including meetings about projects. Whilst this maybe a laudable aim, indeed a critical aim, it is prone to the ‘metricising’ of diversity. It assumes that if you get the numbers right you have solved the problem. A new form of homogenisation takes place. There may be the right number of Black and Brown people, of women, of disabled people but the assumption is that each person ‘stands in’ for their whole community. This is not the usual problem of representation—it is the belief that demographics enable you to read off people’s positions on research or policy by virtue of their membership in a

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demographic group or groups. That their characteristics and life circumstances will inflect their position is very likely—but they have little opportunity to explain their lives in terms comprehensible to researchers. Users involved in research of any kind might rightly be reluctant to give this personal information. And it is critical because important matters will not be captured, there will be little reference to adversity, resilience and social suffering (Farmer et al., 2004; Rylko-Bauer & Farmer, 2016). Even apparently trivial things can make the telling of your story or your analysis of it difficult. Not everybody is familiar with what a ‘meeting’ is as I have already said. And the siting of the meeting on university premises is itself an act of power. Let’s dig a bit deeper and tease apart the idea of ‘authenticity’ for lived experience is often judged on how ‘authentic’ contributions by the public are. Indeed, it has been argued that lived experience contributions are more ‘authentic’ if they come from a research-free environment or person as we have seen.

Lived Experience: What Is It? In this section I shall be concerned with experience viewed as the apex of authenticity. Involvement in research requires that research includes the authentic voice of the survivor/(lay person). The criteria for eligibility to be a lay member of INVOLVE or other organisations were discussed in Chap. 3. There are questions of diversity and level of education central at the moment. If you are studying for a higher degree, you are ineligible to be a representative. Of course, there is a question of ‘diversity’ here too. But there is more besides. Many commentators believe that ‘lived experience’ is an important contribution to research and policy. It supposedly gives a direct representation of the person’s life world. But its value is the contribution of the authentic, ‘authentic’ because it has not been contaminated by the skills and arguments held by researchers. The lay public involved in research must be ‘authentic’ in the way they represent their experiences. This is the value they add. And ‘authentic’ is defined here as not sullied by research experience or culture.

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It must be first noted that there is something odd about this argument. Researchers are writing about what they lack—lived experience. Or if they do have it, they must leave it at the office door, it must be secondary in any research endeavour because that would introduce ‘bias’. Why experiential knowledge might not itself include ‘bias’ is not explained, the category of ‘bias’ itself is not interrogated, but Advisory Groups are now routinely set up to supply the authentic experience needed in a rounded piece of research. Where are these bearers of authentic experience to be found? This is an interesting question because it bears on the debate around groups who are ‘hard to reach’ or ‘seldom heard’ (Cortis et al., 2009; Sheldon et al., 2007). This was addressed differently in Chap. 2. The language changes so as not to ‘blame’ potential participants but the problem at the heart of most papers is still the problem of recruitment (Pinfold et al., 2019). Not just an aimed for number but particular groups to be represented who at the moment are ‘underrepresented’. In other words, researchers are less interested in the particular ‘lived experience’ of these groups than in getting them to participate in research in the first place. There are exceptions of course and they tend to be methodologically distinct, using ethnographic methods (Kirmayer et  al., 2010). Kirmayer and colleagues are concerned with conflict and trauma and these are very carefully theorised and ethically sound in conduct. But the recruitment problem always reappears—the reason is obvious. Some people and groups do not want to be involved in research. Why should they be? They may be leading really rough lives, in poverty, conflict and hostile environments so why on earth would they be interested in research? Importantly, they know, too, that the frame of reference of the researchers and that of their community are so separate that the researchers will never grasp the meanings of their lives. Sometimes this is framed as due to ‘cleverness’, sometimes as ‘out of touch’. They know that they are using a different language to the researchers (Snow & Uccelli, 2009) and this quite apart from the fact that most studies are conducted in English (Williams, 2018). This is a major issue because there is a sense in which the more marginalised from research you are the more ‘authentic’ your experience. The more privileged you are the less ‘authentic’ you can be. And you don’t need to be because of the prize put on ‘neutrality’. These

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last three sentences probably read as nonsense and in a sense they are. But the conclusion is logical if not palatable. To take the issue of ‘diversity’ seriously calls for new conceptualisations not just metrics. An alternative conceptualisation is ‘intersectionality’ to which I devote Chap. 9. The importance of history is important here. As Paul Farmer puts it: Erasure or distortion of history is part of the process of desocialization necessary for the emergence of hegemonic accounts of what happened and why. (Farmer, 2004)

‘Diversity’ as an approach does not bring new knowledges into the frame so that we understand where racism came from, homophobia, sexism and the prejudice that confronts members of the group. This is not on the timetable of most institutions. And this also highlights that people from marginalised groups will have very different ‘lived experience’ to others. Joseph (Joseph, 2019) has argued that the idea of ‘lived experience’ has been reduced to interactions in the health field. The ‘lived experience’ of black groups, for example, can include exclusion from school, being subject to ‘stop and search’ procedures, experiences of discrimination in employment and a general culture where you are constantly told that you don’t fit in. Amiel’s point is not just that all these structures have been determinants in his life and those of others. It is that these sorts of formative experiences are ignored: because they do not fit. What they do not fit is psychiatric discourse, research and practice. In other words, the lived experience of racism in the health field is squashed out, numericised, because ‘lived experience’ itself has been reduced to questions of health and statistics. Whether deliberately or not this monopoly is itself a form of social exclusion and it is enacted by both researchers and survivors. The radical groups, the critical theorists, have queried their own exclusion from institutional sites and social practice, but the idea that mad people are a marginalised group, rather than a crazy group, is only just surfacing as I argued in Chap. 2. Scholars in the disability movement have observed that this movement and its academics are white and reflect white ways of thinking and topics of preoccupation (Bell, 2010). The ramifications of this means that we have to examine our institutions and

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ourselves to see how this came about and can be changed. A further point that I have made already is that, for many, ‘lived experience’ goes way beyond health. If this is so, the idea of ‘lived experience’ as the ultimately authentic voice of marginalisation, especially in mental health, requires serious attention and will need to be reconfigured to ensure whiteness and class are not the norm. These are theoretical statements about the concept of ‘experience’ but they are often answered with respect to peoples everyday experience. Of course there are links between the two but they have not been systematically articulated to any great degree.

Liminal Identities in Liminal Spaces People who straddle more than one identity space, people who are caught between two or more sets of expectations, people who have to force others to see them at all and people in transitions (e.g. youth) have all been addressed in the literature as examples of liminal identities. Consequences of this include exclusion, tension, confusion and lack of order in the world. Most of the literature sees such liminal identities as negative but not wholly so (Piazza, 2019). If not negative then certainly ambiguous, and in some papers the terms ‘liminal’ and ‘ambiguous’ are interchangeable. It is interesting that nearly all work on ‘liminality’ is concerned with identity. So what kinds of identities or subjectivities are required by user involvement in research? Once again, we ask the question of the types of and struggles over identities that survivors in the worlds of research and activism have to navigate if their representation is going to grow. And again, we find that most published work is interested in the subject positions of the researchers in relation to this, not the ‘public’ themselves. Just the balance of the literature instantiates a ‘them’ (lay contributors) and ‘us’ (researchers) situation (Piazza, 2019; Simpson et al., 2018). We have seen how people with certain attributes—middle class, educated and white—have been preferred as public contributors in research at a certain level but recently this has changed and can disqualify some people in certain settings. Again, there is a belief that contributions from (one section of ) the lay public bring more authentic experiences. This was analysed in Chap. 3 and again

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above and there is a focus on researchers’ responsibilities to ‘do’ involvement properly. Simpson et al. position user researchers as having a ‘liminal identity’ in relation to peer support (Simpson et al., 2018). There is also a literature on migrants and homeless people and those from ethnic minorities as embodying liminality, but madness has barely entered this yet (Barrett, 1998; Sargent & Larchanché-Kim, 2006). At least it has barely reached the literature but is in common circulation amongst user researchers. I have argued that ‘survivor researcher’ is a liminal identity itself but this time productive (Rose, 2003). ‘Survivor researcher’ is not an additive position: it is synergistic. You use your experiences of distress and services (or avoiding them) to inform the work you do. But you do not do this alone and the experiences are selected and worked up reflexively and analytically. As I said, most of the literature on this, as with other aspects of user involvement, is about how researchers define their role. Papers on public perceptions and identities are hard to find despite their presence being the whole point of involvement. This is not a book about activism but it is central that activism is represented here. Activism is not wanted by mainstream research for all the reasons I have said—bias, politics, anger you name it. But activism relies on a kind of knowledge and I am going to address this in the Conclusion. Activism is also not wanted by some survivor researchers, especially younger ones, which poses a big problem for me as this is where we started. Move on? We’ll see. Back to liminality and again you could say that the user movement(s) are liminal spaces. Not only are we positioned as unable to know, we are also positioned as unable to organise—disorganised in thought and action. I hope I am countering this. One paper interviewed 19 ‘contributors’ to uncover what identity they held (Maguire & Britten, 2018). It is quite hard to know whether these 19 are being positioned as ‘lay’ or ‘academic’ for the simple reason that they all held jobs in the health care system. Maguire and Britten go a bit further in analysing what liminal identities are. They use Habermas distinction between the ‘system’ and the ‘life world’ to argue that lay contributors to research have to bring aspects of their life world into the research world but are vague on exactly how this is to be accomplished (Baxter, 1987). How to draw the boundaries is not clear, perhaps precisely because liminality entails the breaking

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of boundaries and instability. It means the private world has to figure in research and so that fundamental boundary between professionalism and privacy is breached. Maguire and Britten see this in the title of their paper: You are here because you are unprofessional. Humorous as this may be, it again implies that the researchers leave their life world at the door of their office. They make members of the public those who supply lived experience from an untrammelled position. Maguire and Britten also make use of Habermas ‘ideal speech situation’ or ‘system of communication’. So we come back to language and the implication here is that all power and context can be shed if the communication system goes as it should (Habermas et  al., 1984). In addition, Habermas’ ‘ideal speech situation’ is interpersonal. To me, this will remain a dream and actually get in the way of productive conversation. Not a mention of power in this paper although Habermas has been critiqued on just these grounds (Tewdwr-Jones & Allmendinger, 1998). I have discussed Habermas already in Chap. 5. The ideal speech situation is devoid of conflict, whereas I am representing a world riven with it even though it is not ‘polite’ to say so. I shall come back to this. But the main point is that the question of how to enter experience into research is not just a technical one, it is an epistemic one. Lived experience, then, crops up in many different situations. But when one looks at what has been written about this apparently empowering concept it has many constraints. People have to have the ‘right’ experience and be able to articulate it transparently. There are no structural barriers implicated that might disrupt a conversation and a complete lack of references to power, except in survivor writings. Essentially a theory of the perfect dialogue. Or an account of the conditions which would make the ideal speech situation possible. I do not think it is possible, one cannot delete fear, misunderstanding, lying, violence, robust debate and argument. To rule these out of bounds is to deny a significant part of some survivors’ experiences! There are critics of course—who claim Habermas’ theory is an impossibility, a speech situation in a vacuum (Thompson, 1983). A concept like ‘lived experience’ in the field of madness may seek to destigmatise but it can also ghettoise. And what is the implication when mad people’s account cannot be believed anyway because they cannot credibly account for their own experience? I think

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this is the crunch point: how can a perfect dialogue be enacted when one party’s views cannot be given credence? It is not just that the knowledge of survivors is devalued, it does not count as knowledge at all. And that starts with the supposed first step—‘individual experience’. Subject to testimonial injustice, subject to an absence of credibility. These are challenges that must be faced, in my view. Names, nouns and discourses all are imbricated in inequitable cultures and lead to, or might lead to, various forms of action including protest and counter-narratives. Further, lived experience as an attribute does the work needed for professionals to claim they are working with survivors. My epistemological position is that we do not need general theories that cover everything and it is more helpful to see what kinds of supports, inclusions and exclusions make up the jigsaw puzzle that is the survivor movement and survivor research although not all survivor researchers are part of the movement. The survivor research community is small and not homogenous. Forces are at work to keep it this way or to incorporate it. Make no mistake, there are positive reasons for this not least that people need to keep their jobs if they are in a position to have one and keep their welfare benefits if they are not. I write in this respect from a position of immense privilege. At the end of a (chequered) career, no longer working, I can say what I like as long as it meets certain credentials. And these are not the credentials of psy which will not even admit the ‘grey’ literature never mind count as ‘evidence’ my selected pieces of autobiography which of course are not chosen randomly but to add to the argument.

Individual and Collective Experience I would like to end at the beginning, at the way experiences of distress and protest emerged in the last decades of the twentieth century. To do so, I will draw on Joan Scott’s analysis of the place of the concept of ‘experience’ in critical work (Scott, 1991). Scott positions her arguments about ‘experience’ as squarely theoretical. She argues that ‘experience’ is a foundational category in critical work. Without it, the whole edifice of how it represents the social world would crumble. She argues that experience is understood as an individual attribute and as what makes human life

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possible. All interactions are inter-individual, even organisational relations may be reduced to the sum of inter-individual interactions or even monologues. Against this, she argues that what we ‘are’ is fundamentally a social question. We are shaped by institutional structures, communities, norms, conflict all of which have histories which are essential to understanding the present and geographies which are socially structured too. The paper when it came out created an outcry: “but that is not my experience”; “everybody’s experience is unique”. Scott had ruptured the liberal consensus that we are all different; that our experience is unique to each one of us. The paper is long and complex, coming from a feminist standpoint and taking oral history as exemplifying the idea that each person has a unique story to tell, if only they are allowed to tell it authentically. It subsequently appeared in the book Scott edited with Judith Butler: Feminists Theorize the Political (Butler & Scott, 2013). For them, individual political action is not just pretty much irrelevant—it is impossible. Of course, there were critiques, not least of a universalism that homogenises different subjectivities that arise from the institutions missing from the piece: institutions of racism and heteronormativity, for example (Schor, 1995). Sandra Harding contributed by arguing that feminism was an ‘achievement’ not the expression of essential attributes (S. Harding, 1991) and Donna Haraway took the debate in the direction of ‘situated knowledges’ which I have referred to already. Intersectionality had been written about earlier and outwith the sphere of health with bell hooks Aint I a woman (Hooks, 1982) but gathered pace in the 1990s (Crenshaw, 1991; Nash, 2008). Scott had also positioned herself as a constructivist and her lack of attention to the material and corporeal was part of that debate. This leads me to think that if experience is understood at a conceptual, level then it is systematically patterned. But this did not lie behind the outcries against Scott. These were about the uniqueness of personal experience as commonly understood in everyday interactions. To cut to the chase, I do not believe there is such a thing as unmediated experience: as soon as we express ourselves there is a level of interpretation at play. ‘Raw feels’ are interpreted too (Kirk, 1994). In other words, we are back with radical empiricism unless we accept that any interaction is a double hermeneutic—the speaker interprets their experience for the listener who

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interprets this in turn. This is not an interpersonal phenomenon nor a random, unstructured one. It comes from embeddedness of all interaction in collective discourses and practices. This, of course, has implications for what was said earlier about ‘experience’ as a foundational category for survivors. It is an issue that involves power but it can go both ways. It can be used to disseminate and grow or it can lead to oppression. It also means people are flexible and their ideas and the embodiment of those thoughts and feelings can change. Often people say they have had an ‘epiphany’ in first coming across the survivor movement. I have written about mine which involved someone at a user group meeting talking about her experience in the Emergency Room. She rejected their representations and attitudes and said her rights were being violated (Rose, 2020). I had accepted that representation of myself as manipulative and attention-seeking but the woman’s words ‘changed my mind’. So which was my ‘authentic’ experience? The acceptance of psychiatry’s knowledge and its enactments or engagement with a discourse of harms and rights? Both and neither. Because I was formed already to be receptive to the idea of rights and harms—through activism in feminism and anti-racist struggles in particular. The person I saw in a user group ‘speaking out’ about bad treatment in the ER was using a discourse, occupying a hermeneutic space, with which I was familiar already. So transferring it to madness was not easy, but it was much more possible than for someone without that history. In other words, that collective formation preceded the turn in my ‘individual experience’. That is another reason for privileging the collective or social. I do not say my own formation was necessary to understand what was going on in the ER but it allowed me a formulation that was quite elaborated. Which was ‘authentic’—the image of the manipulative, attention-seeking patient or the person whose rights were being violated? There are many reasons for preferring the latter and I am no relativist. But we cannot judge in terms of ‘authenticity’ because, I submit, such exists only in the imaginary of radical empiricism. Otherwise we would have to say that the people languishing in back wards are ‘cultural dopes’—a phrase attributed to Jaques Donzelot (Donzelot, 1988). Such are simplistic readings of oppression but we should not deny the ‘experience’ of those who are captured nor try to understand it.

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These last paragraphs resonate with Chap. 1 of this book and such work has been formative for me. But, aside from the growth of Mad Studies (Menzies et al., 2013), there is no similar body of work for madness although certainly the literature is growing (Bell, 2010; J. Russo & Sweeney, 2016; Voronka, 2017). This virtual absence needs an explanation or at least the start of one and I began it in Chap. 2 with the analysis of the applicability of the idea of ‘marginalisation’ to the people this book is about. I want to (try to) conclude the book by providing a framework for Mad Epistemologies. It has to be plural as should be obvious by now.

Conclusion: Experience in Context I hope this chapter illuminates the discussion of ‘Terminology’ which constituted the last one. For all its faults I am convinced by Scott’s arguments. Change in policy and politics can only happen collectively and the centrality of ‘experience’, not to mention ‘lived experience’, is for me an ambiguous step, at least, when it is defined routinely and individually, and it is held that only ‘authentic’ individuals that can properly contribute to research and activism. The definition of ‘authentic’ here is explicated only in terms of research experience but I have tried to address this by considering what happens when we broaden it more generally. But there are formidable obstacles and there is a need for more enquiry into ‘epistemic injustice’ because Fricker’s book has been reduced to psychological prejudice in some writings often counterposed against ‘trust’ (Origgi, 2012). Even in the original book it is not clear whether the injustice is individual or collective, especially in respect of hermeneutic injustice. Fricker has revisited her work but these questions remain unresolved, and in the hands of ‘psy’ experts, injustice is not a dominant concept and so they reduce the situation to ‘prejudice’ (Fricker, 2008). Finally, my analysis of the concept ‘lived experience’ and cognate terms is not to function as the lexical police and recommend it be banned! The point of the chapter is to illustrate those moments when such terms exceed their usefulness and are deployed in a way that gives them more reach and more centrality than is warranted. This is easy to do when taking an everyday term and positioning it as the fulcrum that makes

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knowledge possible from the perspective of marginalised people. If ‘experience’ is to be used as a foundational category in survivor work, then there needs to be a discussion about continuities and discontinuities with its meanings in everyday interaction. Otherwise, it is ripe for recuperation and a status consistent with that accorded by Noorani, Näslund and Castro (Castro et  al., 2016; Näslund, 2020; Noorani et  al., 2019). Tentatively, I would say the idea that ‘individual experience’ comes first and then is worked up to collective experience is much too simple. It is much more of a looping effect. At least, the person is situated and not decontextualised and this impacts how they think and act in new situations. We are dialogic beings and subject to structural violence as well as forms of support. The next chapter considers some of the points I have been making here when we turn to research as such. They concern methods and examples from user-led and collaborative research, but they should definitively not be seen as ‘just methods’ as I would argue that theory and method are inseparable, they are not distinct ‘phases’ in any piece of research. In this chapter I have referred to lay researchers as disappointed when always relegated to the ‘tell your story’ part of a workshop or conference and shown that only certain stories are allowed. And yet, the idea of ‘storying’, freed from current constraints, seems to me to bear more promise than that of ‘lived experience’. In this next chapter, dealing with examples of user-led research, I will make use of the term ‘storying’, coined in Sheffield by a team coordinated by Brendan Stone (http://www.storyingsheffield.com/about/). Storying is a collective endeavour made up of elements of different people’s memories at and of different points in time. It is likened to weaving with many threads, some left dangling from the cloth. It is fragmentary and it is open-ended and thus leads to a particular form of knowledge. That is not the syllogistic outcome-focused mainstream knowledge which I have been analysing. What about ‘narrative’ will be the question. ‘Narrative theory’ takes the Western narrative genre as its model: beginning, middle and end. In particular, it entails ‘closure’ and we are nowhere near that yet. There is a question of whether it is needed at all, of whether we need to wrap everything up, have a ‘finished product’.

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Magee, B. (1974). Popper. Psychology Press. Maguire, K., & Britten, N. (2018). ‘You’re there because you are unprofessional’: Patient and public involvement as liminal knowledge spaces. Sociology of Health & Illness, 40(3), 463–477. Menzies, R. J., LeFrançois, B. A., & Reaume, G. (2013). Mad matters: A critical reader in Canadian mad studies. Canadian Scholars Press. Nash, J. C. (2008). Re-thinking intersectionality. Feminist Review, 89(1), 1–15. Näslund, H. (2020). Collective deliberations and hearts on fire: Experiential knowledge among entrepreneurs and organisations in the mental health service user movement. VOLUNTAS-International Journal of Voluntary and Nonprofit Organizations. Noorani, T. (2013). Service user involvement, authority and the ‘expert-by-­ experience’ in mental health. Journal of Political Power, 6(1), 49–68. Noorani, T., Karlsson, M., & Borkman, T. (2019). Deep experiential knowledge: Reflections from mutual aid groups for evidence-based practice. Evidence & Policy: A Journal of Research, Debate and Practice, 15(2), 217–234. Oliver, K., Kothari, A., & Mays, N. (2019). The dark side of coproduction: Do the costs outweigh the benefits for health research? Health Research Policy and Systems, 17(1), 1–10. Origgi, G. (2012). Epistemic injustice and epistemic trust. Social Epistemology, 26(2), 221–235. Piazza, R. (2019). Discourses of identity in liminal places and spaces. Routledge. Pinfold, V., Cotney, J., Hamilton, S., Weeks, C., Corker, E., Evans-Lacko, S., … Thornicroft, G. (2019). Improving recruitment to healthcare research studies: Clinician judgements explored for opting mental health service users out of the time to change viewpoint survey. Journal of Mental Health, 28(1), 42–48. Popper, K. (2013). Realism and the aim of science: From the postscript to the logic of scientific discovery. Routledge. Prussing, E., & Newbury, E. (2016). Neoliberalism and indigenous knowledge: Māori health research and the cultural politics of New Zealand’s “National Science Challenges”. Social Science & Medicine, 150, 57–66. Rose, D. (2003). Having a diagnosis is a qualification for the job. British Medical Journal, 326(7402), 1331. Rose, D. (2019). Navigating an insider/outsider identity in exclusive academic spaces: How far can boundaries be pushed? Journal of Ethics in Mental Health, 10, 1–18. Rose, D. (2020). On personal epiphanies and collective knowledge in survivor research and action. Social Theory & Health, 18(2), 110–122.

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Rose, D., MacDonald, D., Wilson, A., Crawford, M., Barnes, M., & Omeni, E. (2016). Service user led organisations in mental health today. Journal of Mental Health, 1–6. Rose, D., Trevillion, K., Woodall, A., Morgan, C., Feder, G., & Howard, L. (2011). Barriers and facilitators of disclosures of domestic violence by mental health service users: Qualitative study. British Journal of Psychiatry, 198(3), 189–194. https://doi.org/10.1192/bjp.bp.109.072389 Russo, J., & Beresford, P. (2015). Between exclusion and colonisation: Seeking a place for mad people’s knowledge in academia. Disability & Society, 30(1), 153–157. Russo, J., & Sweeney, A. (Eds.). (2016). Searching for a Rose Garden: Challenging psychiatry, fostering mad studies. PCCS Books. Rutter, D., Manley, C., Weaver, T., Crawford, M.  J., & Fulop, N. (2006). Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London. Social Science & Medicine, 58(10), 1973–1984. Rylko-Bauer, B., & Farmer, P. (2016). Structural violence, poverty, and social suffering. The Oxford Handbook of the Social Science of Poverty, 47–74. Sargent, C. F., & Larchanché-Kim, S. (2006). Liminal lives: Immigration status, gender, and the construction of identities among Malian migrants in Paris. American Behavioral Scientist, 50(1), 9–26. Schor, N. (1995). French feminism is a universalism. Differences: A Journal of Feminist. Cultural Studies, 7(1), 15–48. Scott, J. W. (1991). The evidence of experience. Critical Inquiry, 17(4), 773–797. Sheldon, H., Graham, C., Pothecary, N., & Rasul, F. (2007). Increasing response rates amongst black and minority ethnic and seldom heard groups. Europe: Picker Institute. Simpson, A., Oster, C., & Muir-Cochrane, E. (2018). Liminality in the occupational identity of mental health peer support workers: A qualitative study. International Journal of Mental Health Nursing, 27(2), 662–671. Slade, M., Bird, V., Chandler, R., Fox, J., Larsen, J., Tew, J., & Leamy, M. (2010). The contribution of advisory committees and public involvement to large studies: Case study. BMC Health Services Research, 10(1), 323. Snow, C.  E., & Uccelli, P. (2009). The challenge of academic language. The Cambridge Handbook of Literacy, 112, 133. Staniszewska, S., Denegri, S., Matthews, R., & Minogue, V. (2018). Reviewing progress in public involvement in NIHR research: Developing and implementing a new vision for the future. BMJ Open, 8(7), e017124.

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Storm, M., & Edwards, A. (2013). Models of user involvement in the mental health context: Intentions and implementation challenges. Psychiatric Quarterly, 84(3), 313–327. Tewdwr-Jones, M., & Allmendinger, P. (1998). Deconstructing communicative rationality: A critique of Habermasian collaborative planning. Environment and Planning A, 30(11), 1975–1989. Thompson, J. B. (1983). Rationality and social rationalization: An assessment of Habermas’s theory of communicative action. Sociology, 17(2), 278–294. Voronka, J. (2016). The politics of ‘people with lived experience’ experiential authority and the risks of strategic essentialism. Philosophy, Psychiatry, & Psychology, 23(3), 189–201. Voronka, J. (2017). Turning mad knowledge into affective labor: The case of the peer support worker. American Quarterly, 69(2), 333–338. Williams, C.  A. (2018). Decolonising knowledge: Reflections on colonial anthropology and a humanities seminar at the University of the Free State. Journal of Strategic Review for Southern Africa, 40(1), 82–103.

8 Specific Projects Led by Service Users

Background When I was planning this book I decided one part of it should be about specific projects or programmes with which I had been involved and that I would discuss them in depth. Hopefully such an in-depth look could illuminate the bulk of the argument so far. The topics I chose were stigma; service users’ views on Electroconvulsive Therapy (ECT) and user-­ generated outcome measures. The idea was to identify the strong points in relation to the topic of the book, and indeed, also weak points. I also want to demonstrate that how you think about what you have done can change retrospectively and documenting this can be quite illuminating. It means you ‘experienced’ the same project differently at different points in time, and these changes might develop into more powerful arguments. However, when it came to stigma, I hit an ethical dilemma. As one programme on this topic and on which I worked is both vast and internationally known, it would be impossible to retain the anonymity of the main players. It is also the case that I joined this Programme of work on stigma as someone fairly new to the College, so their approach was a learning curve for me. In the end I learned the only ethical thing I could do was to pull out. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_8

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It is, however, a loss in that the subject is very topical and the research is explicitly tied to strategies for change. They are strategies that I do not think are effective practically and with a weak theoretical base. A 5% drop on negative statements about service users counts as a success. It is a success because it is above the threshold for statistical significance but that does not mean it is of practical significance. This is a dilemma we have seen before—effective in the lab but not in the wild (Callon & Rabeharisoa, 2003). Further, an oft-repeated phrase is “stigma is a second illness” thus even borrowing tropes from mainstream clinical discourse. There are counter-arguments when some saw gaps leading them to work on the vital role that social configurations play, when stigma emerges and changes (Link & Phelan, 2001). There are also counter-arguments put by user researchers, in all their variety, concerning how stigma impacts people with mental health challenges—the Programme I am addressing is heavily cognitive (Faulkner, 2017). There was some user involvement but of a light-weight PPI nature and it ended badly. It has also been argued that the real beneficiaries are the budgets of the NGOs that organise these campaigns, not the targets of hostility who are supposed to gain (Grey, 2016). And that is about as much as I can say in a publicly available text. I was new to this kind of research and so pretty silent when it came to service users being silenced. Later it became easier although the ‘pivot on madness’ did not disappear along with concomitant responses. This chapter itself seems dominated by ‘Methods’, but this is a very partial description of user-led changes to the research process because methods and concepts are intimately linked (D. Rose, 2021). An example of some pitfalls may clarify. In a project in Brazil to investigate the nature of empowerment in mental health, the research team decided to use focus groups as their main methodology (Ochocka et al., 2002). The participants were all diagnosed with psychosis. The problem for the researchers was that the participants in the group did not discuss the issues that in a way that made sense to the researchers. The team explained this silence with reference to pathology—psychosis is meaningless rambling. The solution for the researchers was to admit clinicians and managers to the groups because these ‘experts’ could play the role almost of ‘translator’ between patients and researchers. It did not occur to the

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researchers that the unintelligible talk of the participants was a function of the setting in which the groups were conducted or that the ‘topic guide’ contained many questions that were irrelevant at best and meaningless at worst to the lives these persons were leading. The fault always lies with the participants; ‘rationality/science’ is a property of researchers. It follows that there is no need to question themselves or indeed for them to engage in self-reflexivity with respect to the work. The projects I am about to describe could be done perfectly well without the ‘mediators’. Still, I am aware that the book so far has been quite critical of conventional research in mental health so to correct this seems important. Both the examples are dependent on methodological innovations although in retrospect these methodological shifts were dependent on a conceptual shift as to what user involvement in research should be doing. This links of course to previous chapters as more and more of us became aware that in PPI work the role of the public is limited and predefined, oftentimes tacitly. This is especially the case in mental health and some of the reflections in this chapter may shed light on this. In sum, my three examples have been reduced to two and these two are pushing boundaries which the stigma programme was not. I say this to be clear about what a book like this can and cannot do. A main constraint is anonymity for reasons of protection and ethics. But, the two examples to be discussed were in addition conducted in the Service User Research Enterprise (SURE) which on the one hand could be seen as a limitation but on the other meant that we had access to the way conventional research thinks and proceeds as SURE was involved in many collaborations (not all research-based). We also conducted user-led research and this is the case for the two examples here.

Being a User/Survivor Researcher This chapter is specifically concerned with ‘new methodologies’ developed by the Service User Research Enterprise (SURE) which I used to direct. Although there are other teams both inside and outside universities and there are independent researchers doing important work (see last chapter), SURE has a significant place because it was the first team of its

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kind established in universities and is the only one where the lead is a service user researcher. Subsequently, other groups entered the space of user-led research. There were also independent researchers or single user researchers in mainstream spaces. I will describe two of our own novel methodologies and note others that might develop. But I would just highlight now that to the extent that our work is part of the ‘English tradition’, it is not epistemologically sophisticated. Until we re-positioned it, that is. In the last chapter I addressed theoretical issues in user involvement, including in research, and so this chapter will not be linear as new concepts made us see the work in a different way to conventional ones and these differences changed over time but in a wavy rather than straight line and one with loops in it. A story in other words. Almost all the researchers who have worked in SURE over the last 20 years have experience of using or refusing mental health services. They are encouraged to use their experiences of distress and responses to it as explicit tools in their work. This kind of ‘double identity’ is neither additive nor neutral—it is not a question of being a mental health service user AND a researcher. No doubt plenty of researchers fit this description. The difference is to use these experiences synergistically to inform the research that is done. Further, the team is usually big enough to constitute a critical mass such that sharing both personal and research perspectives is a collective endeavour, one that is more than the sum of its parts. Questions of equity and power arise as well and I will address them later. The kind of ‘double identity’ referred to above is not easy for everyone (Faulkner & Thompson, 2021). For some people it is an immediate ‘perfect fit’. But others find it emotionally taxing to ‘use’ their experience of distress and service receipt in their work. In Faulkner and Thompson’s study some were very ambivalent about the identity and how they were supposed to enact it without revisiting traumatic experiences. The demands of academic positions—to get grants and produce papers—left little room to reflect on and deal with these dilemmas. Black service users found these aspects especially oppressive. We have seen this before with peer support (Voronka, 2017). But little attention is paid to the ‘emotional labour’ of being a survivor researcher either analytically or in terms of academic structures.

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At the beginning (SURE was formed in 2001), nearly all team members had been involved, and were still involved, with the user/survivor movement, with the emphasis here on ‘survivor’. This meant two things. First, they were politicised and of course there were criticisms of this. How could we be unbiased? Is this not just anecdote? Are you not over involved? These actual questions were put to me when I was asked by the editor of the British Medical Journal (BMJ) to write a short piece on being a user researcher (D. Rose, 2003). My response included arguments that we do not pretend to be neutral and unbiased partially because that is impossible to achieve (S. Harding, 1991) and that all research, much as it is denied, is socially and politically shaped (Shapin & Fuller, 2015). The difference is that we are transparent about it. We argue that all research involves a ‘standpoint’ in the sense articulated by feminist researcher Sandra Harding (Sandra Harding, 1992; S.  G. Harding, 2004). In addition, Harding argues that feminist positions have to be achieved, they are not part of the ‘essence’ of women. This has clear implications for change and it also complexifies notions of experience. But it is cut through with a variety of tacit assumptions—conceptual and coloured with personal interest (D. Rose, 2003; D. Rose, 2014). Equally, being grounded in the user movement meant that the early researchers were explicit about their user status and not afraid of stigma and discrimination which was still very strong in the early days and has not disappeared now. It has changed though, with the work of authors such as Flick Grey and Alison Faulkner, who make some more critical arguments about anti-­ discrimination efforts, as not dealing with structural injustice and omitting the hurt that is caused when inequity shows itself (Faulkner & Thomas, 2002; Grey, 2016). Nonetheless, as the years have gone by, arguments about stigma have come to the fore and more people are prepared to disclose their service user status. However, they have tended not to have such strong roots in the user movement or no roots at all. So the emphasis shifts to ‘user’. As a result, it was less feasible for them to own the ‘double identity’ which came easily to the early team members. Patricia Hill Collins, the black feminist academic, talks of the ‘outsider within’ and the consequent liminal status of people like her (Collins, 2002). This form of identity—intersectional identity—has been discussed in the last chapter and is followed through in the next. Later

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researchers in SURE wanted to be ‘insiders’, to be what they saw as equal to other researchers in the institution. They were less ready to adopt the perspective or at least the identity, of service user researcher. On one occasion, this created a great deal of tension. A researcher said they thought SURE was a ‘ghetto’ and an embodiment of discrimination because we collected together all the service user researchers in one department. In the end, this was resolved but the point was understandable. However, when I asked the person why she had applied to work in SURE, the answer was simply “I needed the money”. People do. Equally, the user movement has changed and to many it has become weak or irrelevant although still vibrant in some places and there is the internet too. For some it is dominated by complaints. But current structures and recent legislation have reinvigorated debates. The role of the National User Survivor Network (NSUN) in recent revisions to the Mental Health Act (England) is a case in point. Social media have become vibrant places for discussion about service user/survivor research and much of this is pushing boundaries which I will address in the last chapter. And, as I said in Chap. 1 and now NSUN, knowledge is not only generated by those who call themselves ‘researchers’. There is a commitment to social justice which is becoming more developed (Gillan & Pickerill, 2012). And it makes some mainstream researchers nervous. Further, although the debate is sometimes tense and not collegiate, the existence of the UN Convention for the Rights of Persons with Disabilities (CRPD) has intensified the importance of social justice. People with ‘psychosocial disabilities’ have rights for the first time in international law and this is having reach across the globe (see chapters by Plumb and Minkowitz in Spandler et al., 2015). Mainstream psychiatry is not happy and so we have the 1980s in modern guise as charges of ‘unrepresentativeness’ are yet again laid (Freeman et al., 2015). To return specifically to SURE, currently new methodologies, such as ethnography, are being used in a variety of contexts but these are not yet consolidated (Joanne Evans & Papoulias, 2020; D. Rose et al., 2016). I therefore propose to describe two new ways of doing research developed to date and to reflect critically upon them. The first is an adaptation of

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the standard method of systematic review and meta-analysis to produce ‘Consumer-Centred Systematic Reviews’. The example I will use is a systematic review of electroconvulsive therapy: from the perspective of those who have received it and with the addition that the two main researchers had received it. The second makes use of participatory methods to develop outcome measures wholly generated by service users. These methodologies do not completely reject mainstream models and techniques but they do radically alter them. One of the ways in which they do this is to have service user researchers who have first-hand experience of what is being researched conduct the work. In the case of ‘participatory research’ the work takes place on a very small stage compared with the global reach of some participatory projects, although surprisingly there are resonances (Bhatnagar & Williams, 1992). My two examples are enactments of the positive changes that can be made but they are shot through with hurdles and obstacles. The research practice entailed by this double identity— user and researcher—I will address in some detail. Again, retrospective theorising as well as reflective practice has shown that we need theory to fully appreciate the changes being made and that this can take a long time. I end the chapter by inquiring whether the theoretical/methodological arguments put forward in Chap. 7 are in alignment with these two examples? More forcefully, do empirical papers fill out the conceptual arguments made or are we just whistling in the wind? Will the substance of the examples in this chapter flow smoothly from the arguments spelled out in the previous chapter? On the part of those who centre ‘experience’? Conversely, is there a literature or set of arguments that we have completely missed in trying to map user involvement and user-led research? There are certainly things missing but what I mean is whether there are tacit assumptions which, if surfaced, would cause huge problems for not only user research but research in general. Is there a new pattern in the theory of paradigm shifts? If so, are we in Khunian ‘normal science’ but ready for the paradigm shift (Popper, 1970)? Interestingly, Kuhn wrote that paradigm shifts were replete with dangers.

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 xample 1: Consumer/Patient-Centred E Systematic Reviews The work I shall discuss in this section has been prominent if subject to rejection, dismissal, ‘not how you do it’ and ‘not conforming’ to the model way of doing things. Published papers give a certain provisional meaning to a paper through their title. In this case we had wanted to call the paper ‘Service Users Views on Electroconvulsive Therapy (ECT)’ (D. Rose et al., 2004; D. Rose et al., 2003; D. S. Rose et al., 2005). The authorities at the time did not like this title—particularly the use of the term ‘service user’. They wanted to change the title of the paper to include the word ‘patient’, for example, ‘Patients perceptions on ECT’. We argued, they argued back, but they got their way. Once again we see that how survivors are named opens up some doors and closes others. The production of these reviews is clearly viewed by professionals in an ambivalent and contentious way, endorsing what I wrote in the last chapter. The ECT project was commissioned by the Department of Health in England and was controversial from the start. There was also a systematic review of effectivity and safety of ECT taking place and both projects reported to an Advisory Group made up of psychiatrists and (mainly quantitative) methodologists. There were people who did not want the ‘consumer’ review done at all but it went ahead. As well as the overarching Advisory Group, our specific work had a Reference Group with a majority of members who had received ECT themselves. The two main researchers had also received ECT and these two factors multiplied the ‘double identity’ of the service users involved in the work. Our project-­ specific Reference Group also had a psychologist with expertise in qualitative research and a psychiatrist whose special interest was compulsion. These were insisted on by the funders. It did not matter that my PhD was qualitative research—we needed a ‘real’ expert. To recap Chap. 1, systematic reviews and meta-analyses are the ‘gold standard’ in medical research, argued to be more robust than a single Randomised Controlled Trial, although a single RCT also is sometimes called the ‘gold standard’. This hierarchy is articulated in work by the Cochrane Collaboration and the Royal College of Psychiatrists in the UK

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and National Institute for Mental Health (NIMH) in the USA. And as pointed out earlier, there is an additional and deep hierarchy between academic methods and research in other spaces. In terms of psychiatry itself, the ground has not shifted, the RCT is prized, although there are alternatives being proposed, especially that which attends to complexity systems, including health systems and the importance of narrative (T. Greenhalgh & Hurwitz, 1999; Plsek & Greenhalgh, 2001; Woods, 2011). However, the RCT remains the star when it comes to psychiatry as explained in Chap. 1 (Gray & Pinson, 2003). But it has not gone unquestioned with particular arguments about the role of patients, although the approach rarely goes beyond consultation (T. Greenhalgh et al., 2015). The particular role of outcome measures in RCTs and other types of projects will be addressed in the second example. Nonetheless, the work we carried out did not consist of a systematic review or meta-analysis of RCTs. Our data were ‘satisfaction surveys’ administered to people who had received ECT and although such observational studies come rather low down on the hierarchy of evidence, it is still possible to conduct systematic reviews and meta-analyses. However, the mainstream approach had to be changed in two respects. First, such work is meant to include only ‘high-quality’ papers, and these are usually equated with the peer-reviewed literature. In this case, the peer-reviewed studies were conducted by clinicians and conventional researchers and they certainly were not neutral. To be more inclusive, in order to evoke the survivor voice, we included the ‘grey literature’ which in this case were surveys carried out by service user groups and one collaborative of conventional researchers and a service user group (Philpot et al., 2004). This is in contravention of established procedures because this work does not meet ‘quality criteria’. Second, we included ‘testimonies’, that is, first-­ hand accounts of receiving ECT which were mostly sourced from the internet which in the early 2000s was more basic and much smaller than it is today. These testimonies were qualitative data which are conventionally excluded from traditional systematic reviews although recently methods for systematic reviews of qualitative data have been established (Carroll & Booth, 2015) as well as methods for incorporating qualitative data into more traditional systematic reviews (Dixon-Woods et al., 2006).

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The Reference Group decided on the domains to be highlighted and they were perceived benefit, memory loss, information and consent and emotional trauma. Memory loss was important as it is frequently reported as a ‘side-effect’ of ECT and this had been the experience of many in the group. At the time, this was denied in the conventional literature. In England, the person receiving ECT must sign a consent form unless the treatment is to be given under compulsion. Members of the Reference Group said they often thought that there was pressure to consent and that there was insufficient information. A conventional professional member of our Reference Group suggested emotional trauma. Following on from the remarks above, we searched the peer-reviewed literature in the usual way and identified 26 studies assessing service users’ attitudes to ECT. Nearly all referenced the film ‘One Flew over the Cuckoo’s Nest’ as damaging the reputation of ECT which is why I said above that they were not neutral. The film functioned as a kind of ‘black box’—essential for the argument but not explicated, indeed deliberately kept opaque to outsiders (MacKenzie, 2005). Although this concept of ‘black boxing’ is usually deployed in financial and economic research, it helped our analysis of the literature. It stood as proxy for ‘all criticism of ECT is nonsense’. Despite these being research articles, the ‘black box’ is making a quite substantial contribution to the argument about ECT. I would say it is an important driver masquerading as science. The service user reports did not ‘black box’ ECT. We identified nine papers authored by service users, always in a group, and one collaborative project. These were sourced from our previous own knowledge supplemented by snowballing. To assess perceived benefit, we constructed, as is customary, a Forest Plot. This is a quantitative technique which graphs comparatively some statistics for each study—in our case, it was the average percent of people reporting benefit from ECT. Thus, we used a conventional technique but we did not have a conventional result. Normally, studies overlap considerably in their findings for a particular question, but in this case there was complete separation between the studies carried out by clinicians and conventional researchers and those carried out collaboratively or by user groups alone. Visually, the difference was stark. Some conventional studies found reported benefit of the order of 95%, whilst one user group survey reported benefit of 18%. The usual purpose of a

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meta-analysis is to make a more robust estimate—called a ‘point estimate’—of the true average by taking all data into account. But this was a nonsense here because of the complete separation of results according to source. We looked further for the reasons for this result and examined the data statistically again. There seemed to be a pattern which the two sets of findings may have embodied. The conventional research tended to question people as soon as their course of ECT ended, on the ward where they had been staying, with an interviewer not wholly independent of the treating team and with a simple questionnaire. Having been in this situation ourselves, we considered that patients might say that they had benefited from the treatment because they were afraid of repercussions if they did not, to get rid of the person who was asking yet more questions (questions being frequent and routine and not always welcome on psychiatric wards) or even to avoid more treatments. This last came up twice in the testimonies. The user group surveys on the other hand were clearly independent of the treating team, considerable time had elapsed since the treatment, people were not in the hospital and the surveys were more detailed. The response of the overarching Advisory Group to this finding was that the user group surveys were biased because only people unhappy with their treatment would complete them. We were unclear why this should be but also pointed out our more detailed findings and our interpretation of these. Our next finding was even more contentious. We looked at memory loss and this time graphed it without a Forest Plot. Far fewer studies asked about memory loss than about perceived benefit but the findings were clear. Regardless of the source of the information, between one-­ third and 60% of people reported suffering memory loss as a result of ECT. The clinical and user research were at one this time. Memory loss was also a prominent theme in the testimonies. The peer review of safety and efficacy found that a majority of people reported memory loss and there was again no difference with the consumer reviews. Equally, this held for questions on consent. The testimonies were analysed using Framework Analysis which is a simple way of looking at qualitative data (Ritchie & Spencer, 2002). To be clear, ‘testimony’ was defined as a first-hand account of receiving ECT,

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it did not include the opinions of others on the procedure. The analysis of the testimonies supported the results of the user group surveys more than it did the conventional research. In particular, there were multiple references to memory loss of very profound sorts. People said that their memories were their identities, constitutive of their selves and thus they were diminished as people. For these three attributes—memory loss, information and consent— the data were consistent across both categories of review—conventional and survivor—but the interpretations differed. In fact, very few of the peer-reviewed papers asked about information and consent in the first place and the results they had were omitted from the discussion. That is, the finding was reported but it was not discussed as to what it meant. Memory loss was different and the peer-reviewed papers concluded that the memory loss was probably a symptom of depression rather than a consequence of the ECT. One member of the Reference Group had insisted that she had significant memory loss and would they please test her memory. She passed with flying colours but the test was one of anterograde memory not retrograde memory, that is, memory for past events. And it is memory for past events that are central for service users: that is nearly always what is highlighted. To make this a clinical matter avoids many contentious issues. Over the years there has been greater attention to ‘cognitive side-effects’ of ECT but papers argue that it is very difficult to measure retrograde memory loss—it is an evanescent phenomenon—so all studies should be treated with caution. Typically then, papers slide into an argument that if you can’t measure something, its validity in research is in doubt (Semkovska & McLoughlin, 2014). Other papers suggest that placement of the electrodes can have a mitigating effect if the shock is delivered unilaterally rather than bilaterally (Squire et al., 1981). Our own BMJ paper has had over 300 citations in subsequent literature, but they do not make for a coherent picture. We submitted the work thus far to the British Medical Journal (BMJ). They were prepared to accept the inclusion of the grey literature—the service user surveys—but not the qualitative analysis. We argued, they were adamant and so we went ahead, mindful of the pitfalls. Similarly, they insisted that we use the term ‘Patient’ in the title of the article. So does the imperative to publish definitely compromise work. But we were

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not prepared for the controversy which followed. The Royal College of Psychiatrists issued a press release (on a paper?) which said that we had misquoted them on the subject of memory loss when we reported that their patient information leaflet said “as far as we know, it (ECT) has no effect on intelligence or memory”. In fact, the leaflet did say this but when quoted by the College, they omitted this last sentence. As argued earlier, silence, or omission, can be a form of power. The leaflet was later quietly removed. At the same time, the BMJ has a feature called ‘rapid responses’ which means anyone can write in about a recently published paper. So whilst the psychiatrists were unhappy, more than 20 people wrote in with their own stories showing how they aligned with our findings. We can invoke Science and Technology Studies again because there is more going on here than ‘neutral’ academic work. The peer-reviewed papers, with their references to the film One Flew Over the Cuckoo Nest, are committed to the defence of ECT and will use non-academic methods to do this—such as a misleading press report, masquerading as rigour. The quote about memory loss is not an abstract observation—it is part of the context for the defence of ECT. And the typical reference to One Flew Over the Cuckoo’s Nest explicitly says that this gives a complete misrepresentation and they are going to correct it with science. The final part of our analysis considered information and consent. Again, fewer studies looked at this than looked at perceived benefit. But we found again agreement between the clinical and user surveys on the subject of information with a high proportion of people saying that they did not receive enough information prior to treatment and, in countries where consent was required, enough information to give informed consent. In the testimonies, there were examples of people saying they did not freely consent either because of threats of some kind or because they were given the consent form late at night when under the effects of heavy medication. Specific mentions of lack of free consent were confined to the UK, probably because consent from the participant is formally documented in that country, whereas elsewhere proxies can consent. This last finding had policy ramifications. The body which regulates, or at least produces guidelines for, medicines and treatments—NIHCE (National Institute for Health and Clinical Excellence)—in the UK was

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revising its guidelines on ECT whilst we were conducting our review. Indeed, ours and the other review referred to above were specifically set up to inform these guidelines. The new guidelines stipulate that full information must be given, especially about the risk of memory loss. This was the first time that an official body had recognised the frequency of memory loss in ECT recipients. Freely given consent could not be assumed without this information. No user-led study had had this kind of effect on national policy before although there have been some since. The Royal College of Psychiatry, or at least its Research Unit, finally relented. It decided to set up an ECT Accreditation System (ECTAS) which would include a service user questionnaire from the collaborative study that was part of our systematic review. The two empirical researchers from our work were invited to sit on the Steering Group. We declined. We had striven to include things we profoundly disagreed with—to be ‘objective’—throughout the work but neither of us would have ECT again (given the choice) and, the work complete, we had to be able to voice our own opinions.

Analysis from the Present This work challenged received wisdom with some unanticipated results. I think it is no accident that the user researchers were still thoroughly grounded in the user/survivor movement and that they had been recipients of ECT. The research recapitulated the relations that existed in the medical policy arena more generally—doctors know best and people’s opinions are not to be regarded simply as that: opinion. Epistemic injustice again. If this be bias I hope also to have shown that conventional work was far from neutral. So, with this study, I begin the argument that there is no such thing as scientific neutrality. However, the work also impacted policy and this suggests that some at least were beginning to be receptive to such undertakings. Nonetheless, the representation of our work on the Royal College of Psychiatrists website (www.rcpsych.ac.uk ) shows that the battle continues. The pages on the College’s website are generally positive about ECT. When it comes to memory loss, they say the following (web pages accessed 23/03/2021):

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Some patients do say that they have suffered brain damage and that they do have long-term side effects that have changed their lives. Testimony from user groups and observational studies have suggested that, after ECT, some people also experience a change in their personality, a loss of creativity, energy and/or drive, or lack of emotions.

The arguments about negative effects are attributed to “user groups and observational studies” only. The underlying message is that these are not trustworthy sources. The pages do not mention our work but it is unlikely that those who wrote them were unaware of it. Not only do they not acknowledge it, they do not acknowledge that it was research. This is intensified by the reference to ‘user groups’ who are assumed incapable of such activity. As I said, the BMJ article has been cited hundreds of times. Many try to take it apart, re-analysing the data to prove our results false. Others have suggested our findings do not apply with new methods of administering ECT (Semkovska et  al., 2011). Such arguments can always be made and are a drawback of using conventional methods however adapted and different they are in the hands of service user researchers. However, we stormed the citadel of the Cochrane hierarchy, and I would stand by the method and what we discovered. It may seem surprising that I flag a project that included quantitative methods. But it is too simplistic to conclude that qualitative research is always to be preferred in user-led research. We saw this with the study by Gault and colleagues in Chap. 5 (Gault, Pelle, & Chambers). So I have described a new method and its results in a study. We have written about this as a methodological innovation and it is. But different methods can lead beyond method to a conceptual shift including whose voice is represented and amplified and including policy changes. Indeed, an implicit primary goal was to centre the user voice and the methodological innovations were to accomplish this. I have presented it as I remember it supplemented by evidence, and in the ensuing years and for some time the methods remained the important thing. By including the grey literature and testimonies we were carving a space that centred the voice of users in our work. But looking back I can see that the conceptual shift, the centring and not silencing of the user voice, was fundamental.

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In effect, the data told the analytic story of ECT from the perspective of recipients. What was implicit (to me, because it was ‘obvious’) became the headline of the work. Of course, this is explicitly obvious now. But we worked in an institution that was so tied up with methodology that this is how we had to represent it. And, to be honest, I did think of it this way until becoming familiar with critical theories and work on marginalised groups so that I eventually was able to articulate what we had actually done. In relation to the last chapter, the work did hang on people’s experience but that experience was not ‘raw’—it was formulated through processes of both persuasion and research conducted and supported by recipients of ECT and experience outside the research space too. For example, ECT is discussed on many internet chat sites and twitter hashtags. The digital information we used has been replaced by many more of these than were available in 2002. All these fragments of memory and opinion synthesise a story of ECT from the perspective of the people who had received it. The shocked. A question running through this whole book concerns the relation between service users and different ‘mainstreams’. I tried in Chap. 7, but previously too, to analyse the different ways in which service user groups and researchers can ‘collaborate’ or what the term ‘involvement’ can cover when ‘experience’ is at stake. I discussed some papers who themselves address the place of ‘experiential knowledge’ in relation to knowledge-­ making—research and policy (Castro et  al., 2019; Näslund, 2020; Noorani, 2013). These authors represent the contribution of experiential knowledge to research and policy as a smooth, uncontentious relationship between experiential experts and professionals. The ECT work was not like this at all. The area was contentious anyway but the overall ‘Advisory Group’, whilst not openly endorsing ECT, went to great lengths to undermine our work. In the end there was a grudging consensus that the user review was helpful and the Royal College of Psychiatrists set up a quality assurance policy for all hospitals that used ECT. But there was a strong element of surprise that ‘mental patients’ could produce such work and this chimes with what I have said about epistemic injustice. They did not think we had the cognitive capacities. Fortunately, recipients and allies understood and, from feedback, felt understood.

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The other point follows on from the fact this was a mixed-methods study and one part of the ‘mix’, the preferred part, was statistical. Why did we use quantitative methods some user researchers will be asking? First, we wanted to make a comparison and all the conventional papers were statistical. The user group papers also contained numerical information supplemented by written testimony. The desire to compare information from within and outside the mainstream almost mandated a statistical element. But second, numbers are only as good (or bad) as the categories they represent. Our Reference Group decided what we would look at. I will have more to say about this later. Unlike the conventional researchers, we declined to look at how people felt about the need to fast, for example. But that the quantitative and qualitative information had to be published separately was a real drawback as the testimonies, for the most part, supported the user groups rather than the conventional papers. Further, that the quantitative results alone were published in a very high-­ profile journal whilst a success, is one way in which knowledge hierarchies, methodological hierarchies and associated values reproduce themselves in the academy and thus stifle innovation at the level of knowledge and practice. We tried not to, to retain integrity, but there is no getting away from the fact that we were complicit in some part in the reproduction of knowledge hierarchies whilst at the same time disrupting them. I challenge anybody to describe this scenario purely in terms of ‘experience’. In sum, for the survivor-oriented review of ECT, the voice of survivors (ourselves and the Reference Group in this case) had to shout to be heard as the relation between ourselves and the Department of Health Advisory group was full of blocks and hurdles. We had to persuade them that we were credible knowers in the first place, we had to persuade them that our methodological changes were robust, we had to unpick the ‘black boxing’ represented in the ubiquitous references to One Flew Over the Cuckoo’s Nest and we did compromise ourselves by agreeing to omit the qualitative data and accept the term ‘patient’ in the title of the BMJ article. On the positive side, it was our decision what areas to look at and this sparked a controversy as the Advisory Group disagreed; but we held on; we overturned the hierarchy of methods and analysed the results of the Forest Plot by drawing on our own experiences—that of the two researchers and

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also the reference group. We unearthed ‘meanings’ that are usually unspoken (or that those in authority don’t want to hear) and we did this using both numerical and testimonial information. Fundamentally we made public, did not silence or undermine, the different knowledge that arises when research teams and policy makers are made up largely of survivors. In Chap. 1, I argued that people with mental distress are not listened to, are not included, are envisaged as not ‘proper’ researchers. This account of the ECT project shows that it is possible to speak back to that silencing, whatever form it takes. But regression creep takes place too.

Example 2: Participatory Research Whilst the ECT work was ‘desk research’ in that it reviewed a body of literature and did not have participants directly involved, the next example comes from the field of ‘participatory research’ which, of course, does involve people. Participatory research and community engagement are gaining traction academically in the social sciences and with a social justice slant. The concepts themselves have been interrogated as to their relevance to health for marginalised communities (C. Campbell & Jovchelovitch, 2000) as well as in respect of specific groups such as people with disabilities (Radermacher, Sonn, Keys, & Duckett, 2010) and African American men living with HIV/AIDS (Houston, Osborn, Lyons, Masvawure, & Raja, 2015). This example casts its net both wider and more narrowly than the largely social psychological perspective that prevails in this literature (but see Chap. 9), as well as taking as its subject a group who may not have been thought of as a ‘community’—people diagnosed with severe mental illness. It is well known that participatory research began in low-resource settings and has increasingly been applied in high-income countries including in relation to health (Cornwall & Jewkes, 1995). It’s origins go back to Freire although invoking Freire is a bit disingenuous as his means of ‘conscientisation’ was through imparting literary skills (Freire, 2018 (1968) originally 1968). Nonetheless his means were participatory not didactic. So, one of the founding principles of participatory research is

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that it should level the power relations between researchers and the community in respect of, for example, who sets the research agenda, who drives the research process and governs it and who interprets information. In all these aspects of research the community are no longer ‘subjects’ but equal partners. This at least is the mission but achieving it has often proven difficult (Mason & Boutilier, 1996) and some commentators argue it has had paradoxical effects, such as issuing in a ‘tyranny of participation’ (Henkel, Stirrat, Cooke, & Kothari, 2001). Even those who largely promote participatory research note that there may be power relations within a community that prevent full participation of all members. Power distributed according to gender is an example and patriarchy may be hidden if researchers do not reflect on their own gendered positions, Maguire powerfully argues (Maguire, 2006). This goes beyond the recognition that researchers are unlikely to engage all sections of a community equally because there will always be gatekeepers, such as elders in low-resource settings (Mosavel, Simon, Van Stade, & Buchbinder, 2005). (I did flag this complex statement earlier!) Multiple identities may be at stake that intersect in a complex web of power relations which are very hard to reconcile with the principles of participatory research. Mason and Boutilier (Mason & Boutilier, 2009) describe a project in Canada where academic researchers worked with nurses and it became evident only when reflective workshops were held at the end of the programme that institutional factors had operated to prevent a levelling of power relations which the researchers thought had been accomplished. It has also been argued that such complexities can be hidden when large organisations start to promote what their version of ‘participation’ looks like. This criticism was levelled internationally when the World Bank began a programme to ensure that ‘communities’ should always participate in certain policy decisions, for example, regarding agriculture (Henkel et al., 2001). Aside from this being the imposition of an organisational and Western view of participation and ignoring the power relations within communities, Henkel et  al. argued that the very concept ‘community’ was then rendered unexamined. This critique has been pushed even further by some to encompass NGOs who claim to represent impoverished or marginalised groups (Choudry & Kapoor, 2010).

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Most of these arguments are not about participatory research as such (but see J. R. Campbell (2001)) but the concerns with a somewhat messianic view of participation combined with an unexamined concept of the ‘community’ regarded as whole and authentic just waiting for expression given the ‘right’ conditions are relevant to the very discrete issue I will address now (Walsh & High, 1999). In mental health, the discrepancy between how ‘community’ is articulated in policy papers and what it means to people who are ostensibly ‘living in the community’ is vast (Frederick et al., 2018). When interviewed, people with severe distress living in community settings had difficulty in even understanding the questions and answers were revealing—“I talk to the newspaper seller sometimes”. I used this example in Chap. 2 but it bears repeating. Repeating it also shows there is very little work examining such discrepancies in the context of mental health.

User-Generated Outcome Measures The set of projects I am now going to discuss is not at the level of the World Bank. They concern something that seems mundane—outcome measures that are used both clinically and in research. Although this may be seen as technical, boring and bland, the use of questionnaires to assess a person or to assess a situation is ubiquitous. They are essentially a reductive proxy for how people are feeling. But just because they are ubiquitous and taken for granted by clinicians and researchers, they are instruments of power. A ‘score’ on one of these scales can make the difference between whether one is positioned as mentally ill or not and that in turn determines treatment. The form of participatory research we used will be described, followed by some critical reflections. This work has been extensively published although mostly in medical rather than methodological journals (J.  Evans et  al., 2012; Greenwood et  al., 2009; D. Rose et al., 2011; D. Rose et al., 2009). The model was developed at a medical/psychiatric institution and it is worth noting that the first of these articles took over five years to be published and then only appeared as a brief report. Less than radical it may be, but the inherent conservatism of the peer-review process ensured extreme difficulty of publication

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in conventional outlets. Again, hierarchies of knowledge are reproduced through such processes, in this case of peer review. More frankly, when I submitted this work as a conference paper to the USA-based organisation PCORI, I was told “our work is patient-centred, not patient-led”. The ‘participatory’ model at stake here has a rather different claim to reducing power relations than pertains in the ‘industry’ of participatory research but it may not overcome all the difficulties that have been identified in the previous work referenced above. I will return to this but for the moment argue that this claim of novelty rests on the fact that the researchers are in some sense at least members of the same ‘community’ as participants. The participants are chosen because they use (or refuse) mental health services and the researchers likewise have used mental health services themselves and so have experience of what the measure is about— direct or indirect. This is in contrast to most participatory research projects where researchers are external to the community they work with and have a single ‘professional’ identity though this is constantly put in question. Our double position as both service users and researchers pertained to the ECT work as well. This was part of the reason why our conclusions diverged markedly from the conventional literature. However, the main focus of this part of the chapter is on a method for using this ‘double identity’ as service user/survivor and researcher to develop something which at first sight looks very conventional: outcome measures. This work has been done mostly in the arena of mental health and the distinctiveness of this is something I shall return to.

Outcome Measures Outcome measures in health are generally derived by taking existing scales and attempting to improve on them or by identifying potential scale items through the literature, including the literature on existing measures. Researchers, who often also have a clinical position, take the decisions on what are ‘good’ items guided by conventional psychometric and other statistical techniques. In social science focus groups of ‘lay’ individuals are often convened but they do not have any special stake in the content of the scales that are being devised and are selected using

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demographic and market research principles (Oppenheim, 2000). Again, psychometrics plays a key role. Patient-Reported Outcome Measures (PROMs) are enjoying a high profile in health research currently in both the UK and the USA (Marshall et al., 2006), although it has been argued that this work is atheoretical and that this is responsible for its limited impact (J. Greenhalgh et al., 2005). Our critique develops this and rests on the argument that PROMs are limited in impact because they embody a clinical view and ignore the experiences of patients and service users. In effect, the questions are decided by clinicians and researchers and patients simply fill them out. In this sense they are indeed ‘patient reported’ but they are not ‘patient devised’. We have therefore developed a method for Patient-Generated Patient-Reported Outcome Measures (PG-PROMs). The method is described in detail elsewhere (Rose et al., 2011). Again, the use of ‘patient’ was not our choice so it is always shortened.

VOICE We have generated eight such measures to date, but in order to explain the work I will take just one. It is a measure developed to discover service users’ perceptions of acute mental health wards (Evans et al., 2012). It is called Views Of Inpatient CarE (VOICE). This domain is topical as there is much disquiet about this provision with many seeing such wards as hostile, untherapeutic and unsafe and this has intensified since we did the work nine years ago. The measure development started with focus groups but unlike the social science work referenced above, the participants in these groups had been patients in  local inpatient wards very recently, within the previous two years. They therefore had a direct stake in the work undertaken and the significance of their expertise was emphasised by the research team at the start. The facilitators were one person with experience of inpatient provision, including under legal compulsion, and the other also a mental health service user although without inpatient experience. The project also had a reference group mostly made up of people with inpatient experience and this group helped in the construction of the topic guide for the focus groups. And focus groups begin the

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process. There were four groups and the aim was originally for one of these to be composed of people with experience of involuntary admission and very likely coercive practices. This aim was achieved but unsurprisingly in practice all the groups included participants who had been detained and subject to coercive interventions. Each group met twice, and at the first meeting the facilitators disclosed their mental health experience with the objective of making the groups a non-hierarchical and non-medical space. The groups met in community venues, not hospital premises, and food and drink were provided. Participants were paid for their contributions at both groups although the amount was paltry due to welfare benefits restrictions. To this extent we relaxed the conditions that usually pertain for focus groups. For the first wave of groups, the topic guide was introduced, but in the event participants spoke freely and at length, covering the whole of the topic guide and beyond in their own way. Many difficult subjects were discussed, and although these were often painful there was also a good degree of black humour especially in the group where all had been detained as some knew one another and reminisced about their shared experiences in very lively exchanges. The first facilitator, with experience of hospitalisations, led the discussion, whilst the second had a double role. First, they took notes of any non-verbal exchanges such as nods indicating agreement with others or shakes of the head indicating the reverse. Two or three participants spent some of the time walking around and the meaning of this was revealed in how the conversation developed. For example, on one occasion it was to emphasise the points the participant was making; on another it was to preserve distance for a difficult topic. Second, should anyone require time out the second facilitator was there to be with them. In effect, this never arose. The group discussions were digitally recorded and transcribed, and the researchers analysed the recordings thematically aided by software. The aim was to identify main themes in order to begin to construct items for the measure. This analysis was brought back to the second meeting of each group to check with them that we had adequately captured what they said (Schwandt et al., 2007). Only one person (out of 42) did not return for the second meeting. The second meetings also provided an opportunity for participants to add anything they had forgotten or

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anything new that came to mind. In general, the groups agreed with our analysis of the first meetings and did add a number of things provoked by the initial analysis. At the end of the second meetings, we asked each group for a couple of volunteers to participate in the next stage of the research and told them they would all receive feedback when the work was complete. A leaflet summarising the work was prepared and sent to all participants when the work was finished. The second group transcriptions were analysed in the same way as the first. Then, from the two sets of analyses, the researchers constructed a draft questionnaire. This was done reflexively, drawing on their own experience to help the process as data never speak for themselves, a point that links to Chap. 7 given that these data were discussions of ‘experience’. Themes do not ‘emerge’ from transcripts as if they are immanent but require an active process of meaning-making, and in this case this included reflexive engagement of our own experience as well as the experience of being in the focus groups themselves. This point has been made in the literature (Braun & Clarke, 2006) but we took it further for a double grounding in the way inpatient wards are perceived by those who use them. The draft questionnaire was itself mixed methods. It contained questions and Likert-type responses. But the questions were grouped and each group was followed by a large box where people could expand on their responses. The next stage of the research consisted of ‘expert panels’ looking at our draft measure and amending it. We did this through role play—one person asking the questions and another responding to them. The first expert panel was made up of the volunteers referred to above, that is, members of the original focus groups. The purpose of this was to check again that the draft measure complied with what the focus groups had intended. The second expert panel was also made up of people who had been inpatients in the local provider hospital in the previous two years but this time they were new participants. The aim here was to give an opportunity for fresh eyes to look at the measure. As well as the chance to amend the measure, we also asked the panels to look at the language and layout as previous work had shown some commonly used measures to be either difficult or unattractive to the point of shabbiness (Crawford et al., 2011). As a result of this exercise, some changes were made to items and language but these did not contest the basic descriptions highlighted by

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the original focus groups. There was therefore some consensus across participants at least in respect of this particular local provider. The final stage of constructing the measure was undertaken not with former service users but with current ones, people who were in psychiatric hospital. We called this the ‘feasibility’ stage and the aim was to ensure that the measure was easy to complete. We gave it to people in groups of ten. For each group, we examined how they filled it in to identify any ambiguities or difficulties they had. Each time, we tried to resolve these ambiguities, gave it to another group of ten and so on until we had what appeared to be an unambiguous measure that was easy to complete. This point was reached with the fifth group and this essentially was the end of development of VOICE (Views Of Inpatient CarE), our PG-PROM for service users’ perceptions of inpatient wards. Over 100 people took part in this developmental phase. The aim of this process was to develop a measure grounded entirely in the experiences of mental health service users in contrast to how such measures are usually derived. Presently, I will discuss some of the difficulties faced and the extent to which this work counts as participatory research, albeit at this very discrete level. But before this, PG-PROMs go through another stage which may seem contradictory to the principles of participatory research. That is, we do indeed psychometrically test our PG-PROMs. The arguments for this are that a measure is of no use if it is not stable—results could not be relied on if they were subject to whims of context (as opposed to stable effects of context)—and if it is not measuring what it intended to measure. The latter is most unlikely in this case, and from the process of expert panels and the feasibility study we can say that it has good ‘face validity’—that is, it appears to be measuring what it is meant to measure. But we double check. Unlike much psychometric work, ours uses both qualitative and quantitative assessments as described by Fitzpatrick et al. (1998) (www.journalslibrary.nihr.ac.uk/hta/volume-­2/issue-­14). In order to check on stability, a test-retest reliability exercise was conducted. There were 50 participants and all were current inpatients who completed the measure twice with a one-week interval between. The test-retest reliability was very high, much higher than is often the case. To standard psychometricians this is curious. Kline (Kline, 2015), in his revised textbook, argues

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that psychometric testing can only be done where ‘subjects’ are ‘cognitively intact’. Our participants mostly had a diagnosis of active psychosis but they were perfectly able to understand and complete VOICE. I would contend that this was because the measure was user-generated and so made sense to them in their current situation. The second psychometric technique we used was that of factor analysis. Although this seems like a complex numerical process, it does in fact require a high measure of intuition (Thompson, 2004). The quantitative output requires interpretation as well as conceptualisation so that factors can be adequately ‘named’. The factor analysis of VOICE resulted in two factors which we called ‘interaction’ and ‘security’. A factor of interaction is not surprising as descriptions of interaction between service users and staff—or, more commonly, the complete lack of this—are legion in the user literature and often dominated the narrative in the focus groups (MIND, 2004). Security is a different matter, although it had been raised elsewhere, often by carers. The factor indicated that feeling safe on wards or not feeling safe was paramount in the perceptions of people who used them. On the other hand, we found no factor of the ward environment and this is in contradistinction to most scales. This would seem to be because clinical monitors believe this to be important. Our participants did talk about the state of the physical environment, the food and so on but items on these questions did not appear in the final measure as the focus groups and expert panels were not inclined to include them. But psychometrics sometimes throw up idiosyncrasies. To test whether the measure is stable, we do an item-by-item comparison to look for change over time because that would indicate lack of stability. One item did not show stability over time. It was: “I can go outside if I want to”. I pointed out that a change over time here makes sense because someone might be confined to the ward one week, but the next week they would have the ‘privilege’ of going out if they wanted to, sometimes escorted. I also said this was important to service users as otherwise they were confined to the ward environment. However, I lost! What I saw as common sense was seen as a statistical anomaly by the statistician and the item was removed from the scale. Statistics win out over actual examples, linking with what I said about the devaluing of experience in the last chapter. These are small examples; it is their accretion that is the point.

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Delving into the Conversations After the measure generation process was complete, we then conducted a secondary analysis of the entire set of focus group recordings (D Rose, Evans, Laker, & Wykes, 2015). We thought this important as a full picture cannot be given by a score on a scale, even one containing text boxes for further comment as ours did. Again, the relationship between staff and service users was a dominant topic but this time coercion stood out as the most talked about aspect of security and safety. Coercive practices such as control and restraint were often regarded as violence on the part of staff and mostly unnecessary. Such an analysis of course allowed for a more nuanced picture to emerge and it was also possible to provide a counterpoint to staff views. There was a measure being generated at the same time for staff and the secondary qualitative analysis was undertaken for this as well. This in particular demonstrated dramatic differences in how staff and patients perceived the ‘same’ situation. So an outburst of anger was justified by the service users as a result of being ‘caged like animals’. In other words, they had an explanation for the anger. However, the nurses perceived the same occurrence as a symptom of the illness that indicated danger and needed to be medicated away, by force if necessary. This misalignment of perceptions and discourses I explicated at length in Chap. 5. In sum, the measure development and analysis of the focus groups started a story about what it is like to be on an acute ward in psychiatry. It was sifted through memories, agreements and prior relations such that we had a picture of this particular ‘experience’. And it was not complete as people voiced hopes and fears individually and as a group.

Participatory Research and Power Does the process just described count as participatory research? In particular, did we succeed in levelling the power relations between ourselves as user researchers and the participants in the study? At this point, I need to revert to anecdote. We started the focus groups by emphasising how much their experience was sought in order to provide a picture of the inpatient experience that had accuracy and depth. On the whole, this

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together with our own disclosure seemed to make for free and uninhibited discussion. However, one issue arose which suggested that this levelling was not complete. At the end of one focus group a participant said “oh, I forgot you are not psychiatrists”. For this participant at least, something about the very fact that we ran the groups made it like any other research encounter, and what these participants are used to is research run by clinicians. The provider is very research-heavy and some complain about ‘research fatigue’. In some way, and it is perfectly reasonable, we were not ‘like them’. The issues raised by authors such as Mason and Boutelier (Mason & Boutilier, 2009) arose in our work as well but differently. Their participants were nurses but like them, we are not working with a mostly self-­ contained community but within a distributed structured system—that of psychiatric services in England and in this case a metropolitan area ranking high on every index of deprivation and marginalisation that exists. We do not have gatekeepers to a prescribed community but we also do not have unfettered access to potential participants. So, in order to find people who would like to participate, our gatekeepers are the mental health professionals that have primary responsibility for them. These are mainly nurses and social workers and they are selective in whom they put forward. They routinely filter out potential participants who they deem too vulnerable or ‘chaotic’. They may make reference to ‘lack of capacity’ but this does not mean they have made an assessment under the Mental Capacity Act 2005 (www.legislation.gov.uk/ukpga/2005/9/ contents)—an issue in itself (Series, 2015). Or it may be far more lackadaisical in that they choose people they like, who have certain normative characteristics. They may also, for reasons of beneficence, exclude people with ambiguous or no residence rights. Demographically our groups were reflective of the local community in terms of gender, ethnicity, age and sexual orientation, but the exclusion of those deemed vulnerable or chaotic or ‘lacking in capacity’ is serious as the experience of inpatient care is likely different for these groups and yet that is not represented in our measure. This of course is an issue for all research involving humans but mostly it figures as a ‘taken for granted’ and not interrogated as to its implications. This is reinforced by its status in formal ethical procedures,

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a question currently being examined by Lucy Series (pers. comm. July, 2019). Ethics Committees work with documentation that explicitly mentions ‘capacity’. The other way in which power creeps in here is if we are in fact complacent about demographic ‘representativeness’ and take metrics to represent perspectives, a point already made. The researchers in this study were two white, straight women. Research into acute care in psychiatry, such as the study I am discussing, is sometimes conducted with involvement of service user researchers. People from Black and Ethnic Minority communities are vastly overrepresented in this provision, more likely to be detained and compelled, more likely to receive a diagnosis of psychosis, more likely to enter mental health services via the police and less likely to receive psychological services in both the UK (Fernando & Keating, 2008) and the USA (Jackson et al., 2004). Including Black and Brown survivors in such research is vital but at the same time they cannot be expected to carry the weight of the history that has led to this situation. In addition, the Anglophone scientific paradigm of generating knowledge through empirical research may not be adequate to capturing the systemic injustices at stake. In one consultation with such Black service users we repeated a forum for gathering community priorities for research (Robotham et al., 2016). One of the priorities for this group was turning the tables in research. “Stop treating us as guinea pigs, as the problem. Research yourselves and the systems you create and inhabit”. Making sure samples are ‘representative’ will never touch and certainly will never solve this issue. Whether in practice the colour and sexuality of the researchers made a difference is difficult to know. VOICE is the only scale in the field that has questions on ethnicity which means at least the participants felt able to discuss it with us there. How they discussed it might have been influenced by our presence and role.

Ethics It used to be the case that Research Ethics Committees (RECs) were suspicious of user involvement in research for much the same reason as clinicians which is hardly a surprise as clinical views are listened to in RECs.

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This issue is not as difficult now but the drive for ethical research goes beyond Ethics Committees (Faulkner, 2004). We encountered two ethical dilemmas, one serious and organisational and one at first sight personal but with implications for research integrity. The first concerned treatment on a particular ward that amounted almost to abuse. As we had been told about this in the confidential setting of a research group, we at first thought that formal ethical criteria precluded us from taking it further. However, the situation seemed sufficiently serious to do something about it. We therefore reformulated what the participants had told us in the language of harms, as harm is a condition for breaking confidentiality in terms of Ethics Committees. We asked our informants for their permission to take it to the Chief Executive of the Trust and they readily agreed. And so the Chief Executive was informed about the ward and the behaviour of the staff. He was asked if he could intervene whilst retaining the anonymity of the former patients as this was a condition they had stipulated, not wanting to risk a backlash should they be admitted again. This he agreed to do and things seemed to change at least temporarily. This was, however, a very delicate matter because the future treatment of service users might have been at stake. And the research team might still have been deemed to have breached ethical procedures had there been an audit. Ethics is not a simple matter in research. The second ethical dilemma was not nearly as serious but it was personally difficult and does have research implications. At the end of one focus group, a participant asked me if my experience had been the same as that described during the group. I had not anticipated this question although in hindsight it was eminently predictable given what we had disclosed. I did not give an adequate answer and mumbled something about it being more or less the same. That was a lesson for future research. We emphasised a principle of reciprocity at the start of the meeting, and at the end, violated it. Participatory research as practised in work such as this requires a balance between disclosure and not contaminating the work. As the question came at the end of a first wave group, a detailed account of my own experience may have affected the nature of the second meeting of the group. I now offer a little of my experience in such groups but, if possible, at the end. Certainly, there are more open ways of handling this in participatory research (Kalathil, Bhakta, Daniel, Joseph, & Trivedi, 2011).

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Power had yet anther guise in this project. We showed some of our data to the Principal Investigator of the project. In one quote, the participant, a Kenyan, described nurses talking about him in a non-Kenyan language. The nurses thought he would not understand the language and so felt able to talk about him in a very demeaning way. But he just scoffed and said “I speak 10 languages”. The PI said that we could not use the quote as it could not be true. This is not the case—many East Africans speak several languages, some of which are quite close in terms of semantics and syntax. The PI did not believe what the participant said because they thought a mentally ill person could not have that capacity. Epistemic injustice in yet another guise. We were furious because the example was telling but we were not ultimately in charge.

Community Validation In terms of going outside the academy, we often work with a local user group to present and disseminate our work in order to find out what the local service user community reactions to it are. We took VOICE to the space where this group meet and held a workshop. Most liked the measure and one said that they wished it had been around when they were in in-patient settings. There were, however, two other reactions and they were very different. One person said they could never have completed the measure when in hospital because they had been so unwell. But a second described it as ‘simplistic’ and entailing a conception of service users as stupid. This gave us pause as we had always prized our measures as ‘easy to complete’. For the first time, a service user complained of our apparent perception of that community’s capacities, and we have stopped being unwittingly patronising.

Modifying the Model Latterly, the model described above has been changed and the views of professionals included (Neale et al., 2014; Wykes et al., 2017). Indeed, they are included at the start and therefore in some sense frame the

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research. This is balanced by a consideration of service users’ views but not always by service user researchers (Neale et al., 2015). Such a move departs from a wholly service user developed model and it is an open question whether it is an improvement. The focus groups in Wykes et al. were run by service user researchers but this was preceded by a Delphi exercise with professionals and followed by a very complex exercise borrowed from health economics and involving multiple statistical tests. Such additions are intended to make the model more ‘scientific’, but one might also argue that it makes it less ‘pure’, certainly less user-centred. The issue came up again, this time on a measure of side effects of medication. At the paper-writing stage, the psychopharmacologist wanted to frame the paper narrowly as to what counted formally as a ‘side-effect’, that is, one that had been documented. And that this should be decided by specialists in the medical field. I disputed this and the writing was softened to a degree. So certainly there is the potential for disagreement between user and conventional researchers and the criteria for which view is in the ascendant are not clear. The criteria are not clear, but the evidence and knowledge hierarchies are.

Is There a ‘Community’ of Mental Health Service Users/Survivors? I have dealt with this question in Chap. 2 and the answer must be negative. The vast literature on ‘stigma’ shows that probably the majority of people with a psychiatric diagnosis go to great lengths to hide it most of the time (Isaksson et al., 2017). However, I also quoted the statistic that one in four people will suffer from a mental illness in any one year (https://www.time-­t o-­c hange.org.uk/mental-­h ealth-­s tatistics-­f acts). Currently (2021) there is an explosion of mental health ‘talk’ and it would be much more than one in four. I deal with this in the last chapter. However, the implication is that these individuals are randomly distributed across the population; that ‘mental illness can happen to anyone’. But it has been known for half a century that inequalities are critical in determining who this ‘anyone’ might be (Hollingshead & Redlich, 1958).

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Attributes of marginalised groups can be written into the very diagnostic categories themselves as I said of the ‘protest psychosis’ (Metzl, 2010). Borderline Personality Disorder is another example where an ‘excess of femininity’ lies behind the diagnostic criteria. And yet anti-stigma campaigns often proceed as if such arguments were irrelevant. Further, we saw in Chaps. 1 and 2 that mental health service users do often seek out each other for support, advocacy or campaigning activities. It did not surprise me that people in the focus groups knew each other well and that those who did had experienced the most coercive practices and were friends. And this in a small way shows that collective knowledge is more than the sum of the experiences in the group. In many countries, day facilities and services used to be places where service users could get together in ‘safe’ places, regarded as a refuge from a hostile society (Sweeney, Gillard, Wykes, & Rose, 2015). Such spaces are now deemed a repository of ‘dependency’ and despite talk of social capital (Webber et al., 2014) and the importance of social networks for ‘recovery’ to be emphasised in ‘Recovery Colleges’ (Perkins, Repper, Rinaldi, & Brown, 2012), the idea that these networks might be composed of other service users is frowned upon. As we saw in Chaps. 2 and 7, even peer support has lost its original meaning (Faulkner & Kalathil, 2012). Indeed, recent initiatives seem designed to isolate and individualise by dismantling previously collective spaces. And yet, it is clear that service users resist this and find in associating with each other not only a real sense of support but one that can also take the form of campaigning and knowledge making to reimagine a different future where they become, sometimes for the first time in centuries, agents of collective change rather than suitable cases for treatment or something worse. This does not entail a ‘community’ or an homogenous or universal engagement with all designated mentally disordered. To claim such would indeed be absurd. But it does mean that in unexpected places, new resistances and resiliencies are formed that do not take normative shapes. That these are fluid, argumentative and often local is evident but in the small projects described here, we at least partially engaged with them. And research such as this is itself becoming more widespread and we witness a beginning, a very difficult beginning, of breaking the silence (Reville & Church, 2012; Staddon, 2015), which brings us back to the concept of ‘experience’ but in a

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roundabout way. So, I just note that the development in the project of aspects of ‘experience’ takes a non-linear form. This applies to the researchers as much as participants, who if reflexivity means anything will reformulate interpretations as we go along—on both small and large scales. So, once again, we have a ‘story’ of the experience of inpatient psychiatric wards, a collectively generated story. It is not an unmediated collection of individual experiences. It is context-specific belonging to both in-patient wards and research. Power was described at length by participants. But try as we might, power was also held by us.

Conclusion The conceptual and methodological changes described here led to a different kind of knowledge. Perhaps not a paradigm shift but a fracturing of some of the taken-for-granted assumptions of mainstream knowledge. In particular ‘mental patients’ are speaking and drawing and photographing publicly. Is anybody listening? Some, probably. But is anybody hearing? This is more challenging and will be a theme in the final chapter. The participatory research described here is on a miniscule scale compared to the extension of the idea to international programmes. And yet, I have tried to show that some of the same problems pertain, perhaps surprisingly. Our models retain some principles of participatory research but they retain some principles of conventional science too. It varies from both in the drive to turn conventional wisdom on its head and to foreground the voice of those usually positioned as merely subjects (read objects) of research. And again going back to the previous chapter, this grounding is in experience but more specifically it is in memories and in fragments, hopes and fears which collectively formulated become stories but not completely coherent ones nor ones with a beginning and end. In both examples, it was possible to conceptualise the work as giving rise to or storying certain experiences of people at the sharp end of psychiatry. I do this provisionally, however, as it requires more work. The difficulties identified here are not proposed as tensions to be ‘solved’, although they can be learned from. They are dilemmas that can be articulated so as better to facilitate clear thinking and good practice, not promises of an unattainable perfect state.

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mental health. International journal of methods in psychiatric research, 13(4), 196–207. Kalathil, J., Bhakta, R., Daniel, O., Joseph, D., & Trivedi, P. (2011). Recovery and resilience: African, African-Caribbean and South Asian women’s narratives of recovering from mental distress. London: Mental Health Foundation. Kline, P. (2015). A Handbook of Test Construction (Psychology Revivals): Introduction to Psychometric Design. Routledge: London and New York. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 363–385. MacKenzie, D. (2005). Opening the black boxes of global finance. Review of International Political Economy, 12(4), 555–576. Maguire, P. (2006). Uneven ground: Feminisms and action research. In H. Bradbury & P. Reason (Eds.), Handbook of action research (pp. 60–70). Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient‐reported outcome measures on routine practice: A structured review. Journal of evaluation in clinical practice, 12, 559–568. Mason, R., & Boutilier, M. (1996). The challenge of genuine power sharing in participatory research: the gap between theory and practice. Can J Commun Ment Health, 15(2), 145–152. Retrieved from http://www.ncbi.nlm.nih.gov/ pubmed/10166891 Mason, R., & Boutilier, M. (2009). The challenge of genuine power sharing in participatory research: The gap between theory and practice. Canadian Journal of Community Mental Health, 15(2), 145–152. Metzl, J. M. (2010). The protest psychosis: How schizophrenia became a black disease: Beacon Press. MIND. (2004). WardWatch. London: MIND. Mosavel, M., Simon, C., Van Stade, D., & Buchbinder, M. (2005). Communitybased participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Social science & medicine, 61(12), 2577–2587. Näslund, H. (2020). Collective deliberations and hearts on fire: Experiential knowledge among entrepreneurs and organisations in the mental health ­service user movement. VOLUNTAS: International Journal of Voluntary and Nonprofit Organizations, 33, 1–12. Neale, J., Finch, E., Marsden, J., Mitcheson, L., Rose, D., Strang, J., . . . Wykes, T. (2014). How should we measure addiction recovery? Analysis of service provider perspectives using online Delphi groups. Drugs: education, prevention and policy, 21(4), 310–323.

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Neale, J., Tompkins, C., Wheeler, C., Finch, E., Marsden, J., Mitcheson, L., . . . Strang, J. (2015). “You’re all going to hate the word ‘recovery’by the end of this”: Service users’ views of measuring addiction recovery. Drugs: education, prevention and policy, 22(1), 26–34. Noorani, T. (2013). Service user involvement, authority and the ‘expert-by-­ experience’in mental health. Journal of Political Power, 6(1), 49–68. Ochocka, J., Janzen, R., & Nelson, G. (2002). Sharing power and knowledge: Professional and mental health consumer/survivor researchers working together in a participatory action research project. Psychiatric Rehabilitation Journal, 25(4), 379. Oppenheim, A. N. (2000). Questionnaire design, interviewing and attitude measurement. Bloomsbury Publishing. Perkins, R., Repper, J., Rinaldi, M., & Brown, H. (2012). 1. Recovery Colleges. London: IMRoC. Philpot, M., Collins, C., Trivedi, P., Treloar, A., Gallacher, S., & Rose, D. (2004). Eliciting users’ views of ECT in two mental health trusts with a user-designed questionnaire. Journal of Menta`l Health, 13(4), 403–413. https://doi.org/1 0.1080/09638230410001729843 Plsek, P.  E., & Greenhalgh, T. (2001). Complexity science: The challenge of complexity in health care. BMJ: British Medical Journal, 323(7313), 625. Popper, K. R. (1970). Normal science and its dangers. Cambridge University Press. Radermacher, H., Sonn, C., Keys, C., & Duckett, P. (2010). Disability and participation: It’s about us but still without us! Journal of Community & Applied Social Psychology, 20(5), 333–346. Reville, D., & Church, K. (2012). Mad Activism Enters Its Fifth Decade: Psychiatric Survivor Organizing in Toronto. In A. Choudry, E. Shragge, & J. Hanley (Eds.). Organize!: Building from the Local for Global Justice (pp. 189–201). Toronto: PM Press. Ritchie, J., & Spencer, L. (2002). Qualitative data analysis for applied policy research. The Qualitative Researcher’s Companion, 573, 305–329. Robotham, D., Wykes, T., Rose, D., Doughty, L., Strange, S., Neale, J., & Hotopf, M. (2016). Service user and carer priorities in a Biomedical Research Centre for mental health. In: Taylor & Francis. Rose, D. (2003). Having a diagnosis is a qualification for the job. British Medical Journal, 326(7402), 1331. Rose, D. (2014). Patient and public involvement in health research: Ethical imperative and/or radical challenge? Journal of Health Psychology, 19(1), 149–158.

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Part IV Guiding Principles

9 Intersectionality and Mental Life Disturbed

Background To use the term ‘intersectionality’ is to go beyond notions of ‘diversity’ or ‘difference’ to a specific proposition. That is, if a person or group has more than one devalued attribute—say they are Black and a woman— these two attributes are not ‘added together’ but constitute a new and different positionality to either a white woman or a Black man. The initial steps in formulating thinking around multiple identities or positionalities were indeed taken by women of colour, especially early on bell hooks, and the classic by Kimberly Crenshaw where she explicitly talks about ‘the margins’, marginalised groups. Now it is being questioned not in the main theoretically but pragmatically for research (Crenshaw, 1991; Hooks, 1982; Nash, 2008). Interestingly, it is also feminist scholars who are using this idea in the Global South (Midgley, 2007). So, this chapter will look at the intersections between madness and other attributes. Consistent with critical theories, these will be instances of subjugation but this does not need to be so to use the concept. People with power may occupy intersecting powerful positions—white, male, CEO, for example (Brekhus, 1998). They too are positioned socially but here I am © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_9

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concerned with those who are positioned in socially devalued ways in this case involving madness, to flesh out the point about non-homogeneity and power. One way to specify the concept of intersectionality is to compare it with other ways of accounting for variation, for example, epidemiological analysis. Suppose one wanted to know about the rate of successful prosecutions for domestic violence in a particular jurisdiction. Preliminary data or thought experiments suggest poverty, poor housing and contact with mental health services would affect the rate of success (negatively). So, the epidemiologist builds a model with rate of success of conviction as the ‘outcome’ and the other attributes as possible ‘causes’. And they find that a certain quantity of the rate of success is accounted for by poverty, but independently it is impacted by housing status. This would be called a ‘regression equation’. But it takes the attributes one at a time, perhaps adds them up, but has no way of configuring them into specific positionalities, for instance, ‘women in poor housing and in touch with mental health services’ have two important attributes that might contribute to their chances of success, or lack of it, in court. Epidemiologists quantify the contribution of various attributes to the domain of interest. They are not conceived as a specific socially constructed and subjugated position. Indeed, to do this quantitatively would not be possible as it requires concepts specific to critical theory and absent from epidemiology. This particular example is one I made up. But to see how these sorts of analyses play out very differently to one based on intersectionality, see Paraschiv (2017). Paraschiv’s paper is concerned with poverty, education and well-being and uses OECD categories as they are judged the best available. But life is not structured like a regression equation and the search for ‘key ingredients’ is futile if the context as a whole is what is making the difference. I have two main arguments in this chapter. First, to say that as a ‘way of thinking’ intersectional perspectives are very valuable. That they can usefully function as an overarching perspective in a range of settings. But second to say that in respect of specific research projects, it has limitations. In brief, there are usually too many relevant attributes to make research feasible unless you are conducting a case study of a specific community.

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Approach The bulk of the chapter will look at how madness intersects with two other subjugated groups—women and racialised peoples. My data are confined to the Global North so it is diasporic or settler-dominated communities I shall be concerned with. I have deliberately chosen distinct but complex groupings. But, of course, even this contains another intersecting position—women of colour. I will return to this after taking the two domains separately. In both cases, historical material will figure centrally and it will be focused on how mental life is and has been imagined and lived. One purpose is always to ask the question: is the past still active, in some way, in the present? And we can ask this in terms of academic work or in terms of popular representations and actions and within a specific time frame or culture. And we can also enquire if this ‘activeness’ of the past in the present is hidden or buried. I shall conclude with some points about relations with user-led research and, indeed, research more generally. And in Chap. 10 I will try to draw everything together to sketch the foundations of a ‘Mad Epistemology’ although this will in fact be plural.

Women and Madness In the academy, books on women and madness began to appear in the early 1970s and they were strongly linked to second-wave feminism. The first and probably her most celebrated was Phyllis Chesler’s Women and Madness (Chesler, 2018 [1972]). She argued two significant things. First, that women were driven mad by patriarchy, as represented by psychoanalysis mostly which was still dominant at the time. And, second, that women’s ‘madness’ was intelligible. Chesler was a psychologist and a lawyer by training and in 1969 founded the Association of Women in Psychology. Activist and feminist, she collected stories of women who had been incarcerated since the eighteenth century and secretly committed their thoughts to paper or even

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stitched them into garments (Hornstein, 2017). Elizabeth Packard’s account of her incarceration is horrific. The reason for it? She wished to become educated and this was against her husband’s wishes. Specifically, she wanted to teach the children at her Sunday School that people were born good, not evil. This was such an abnormal wish, she was deemed mad and incarcerated. Chesler also dissected psychoanalysis, including the ‘anti-psychiatric’ idea of the ‘schizophrenogenic mother’, as well as the Diagnostic and Statistical Manual (DSM), 2nd version, which had yet to eject Freud. She made trauma central to her analysis and argued that most women’s ‘madness’ was a reasonable reaction to trauma as well as an extension of ‘what counted as femininity’ (anxiety, tears, screaming). In this analysis then, women’s madness is a reasonable reaction to unreasonable, but normative, circumstances. Whilst hurting themselves, they are rebelling. In terms of intersectionality, there is no step-change or radical difference between women who are labelled mad and those who are not. It is a question first of degree and second of circumstance. The resulting experience, internal and external, is a departure from ‘normality’ though. The title of Hornstein’s text (2017 originally 2009) is Agnes Jacket. It concerned a jacket woven by a female patient and is one in her collection of women’s narratives of madness. The author literally wove a jacket to represent her encounters with psychiatry. To do this Hornstein used a social constructionist approach. She argues that what is seen as ‘women’s madness’ is the natural state of femininity under patriarchy, some are just unlucky enough to be labelled and incarcerated. So again, it is proposed that women are made mad by patriarchy. It is interesting that in the 1970s and 1980s, there were strong debates amongst different branches of feminism theoretically—socialist feminism, capitalist patriarchy, patriarchy, feminists of colour. But when it comes to madness it is Patriarchy in the guise of a system (psychiatry, psychoanalysis) or relationship (usually marriage) that is the dominant conceptual framework. There were other collections of memoirs, and confinement was not only for the poor—Zelda Fitzgerald, Virginia Woolf—but these are exceptions, and their familial and psychiatric experiences were exceptionally torrid. One point that has been made in the field of user research about these collections is worth noting. That is, that the editors of the memoirs are

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academics, they have not themselves been confined or diagnosed and this is a flaw, the ‘experiential’ element is missing (Russo, 2016). This takes us back to Chap. 7 and the question: how and by whom is madness to be represented? There are ‘allies’ who write about madness but I already said in Chap. 5 that the issue of ‘allies’ is controversial and there is a possibility that they will be more aligned with mainstream thinking and ‘take over’ mad knowledge. Cresswell and Spandler, for example, write about the ‘engaged academic’. But they are writing about people like themselves and what they can ‘do’ for the movement. Actual survivor researchers, two of them only, are relegated to a footnote (Cresswell & Spandler, 2013). Despite the recency of Cresswell and Spandler’s argument, the role of the non-mad academic changed in the ensuing years with the publication of autobiographical accounts such as by Kate Millett and Kay Redfield Jameison (Jamison, 1995; Millet, 1990). Interestingly, Millett and Jameison take completely different views of madness. For Millett the Loony Bin Trip is a wild epitome of patriarchy and barbarity. But Jameison subscribes to a biomedical model of ‘bipolar’ disorder—so for her there is a radical difference between those women diagnosed mad and those not and it lies in neural circuitry. So, if patriarchy is the dominant concept in these narratives, it does not go uncontested and this has implications for action. Jameison, for example, campaigns for better access to medication, whereas most feminist writing on medication takes a negative view in arguing that medication should be banned or used in the very short term (Slater, 2011). I will come to supports presently. But the intersection between women and madness thus far is represented as causal—women’s social position under patriarchy drives them to states labelled ‘mentally ill’. But this is not the only position and there is the whole ‘mainstream’ literature which does posit biochemical differences between men and women as responsible for the differential distribution of symptomatology and diagnosis. The feminist writing is on the margins of this. On this point, we may look at a diagnosis that is overwhelmingly attributed to women—Borderline Personality Disorder (BPD) (sometimes called Emotionally Unstable Personality Disorder). This is highly controversial as it positions women as unable to form stable relationships, impulsive, hypersexual and characterised by acts of self-harm. Organisations such as PD in the BIN (see Chap. 2) simply say it is

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‘insulting’, insulting to say that their very personality is disordered. Looking at ‘stigma’, Bonnington and Rose found that health services were the dominant setting where this group was discriminated against (Bonnington & Rose, 2014). Psychiatrists themselves are divided, but most defend it (Fonagy & Bateman, 2006). And if we think that torture is a thing of the past, women in Bonnington and Rose’s study recounted being stitched up without an anaesthetic when they had cut themselves. The question here is what does this diagnosis say about women? That they crave attention, are unreliable, manipulative and emotionally unsound. It is not much of a stretch to hear echoes of Freud’s description of the ‘hysteric’ here and Fonagy has actually attempted to map Freudian concepts onto brain areas in children (Fonagy & Target, 2000). Does this notion of the ‘past in the present’ stand up? If Elizabeth Packard rejected femininity by seeking intellectual independence, people with this diagnosis are both extending and rejecting femininity at the same time and being mistreated or punished for it. And it would appear that today, this very stereotypical picture is a threat. Settings are important. In 2018, a very well-known British psychiatrist wrote a book purportedly to ‘destigmatise’ the diagnosis of BPD. It’s title was: Taming the Beast Within (Tyrer, 2018). I appreciate this seems very extreme. And the diagnosis of BPD seems to pack every stereotype that is held about women into one ‘disorder’. And this is the group who are never believed when they tell their story—women make things up. So they are positioned as not credible witnesses and we are back again with epistemic injustice (Fricker, 2007). But none of this is surfaced in the mainstream—such women have a ‘disorder’. There is much more to say, other diagnoses and therapies to dissect, particularly today, eating distress. There are other histories, including visual histories, again starting from Freud (Gilman et  al., 1993). And there are dilemmas. If woman’s madness (any madness indeed) is ‘socially constructed’, one response is to say that this implies they do not suffer. It is rarely written down but it is always amongst the first question at meetings: ‘you are saying it is constructed so they don’t have real illnesses, real suffering’. Jane Ussher has grappled with this in detail pitting her later work against the earlier which argued mental illness was a ‘myth’. She explains and revises this and strongly rejects the criticism in her later

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work where she explores the nature of this suffering (J. Ussher & Ussher, 2011; J.  M. Ussher, 1991). As to BPD, the current counter-narrative takes us back to Chesler, in arguing that what is called ‘Borderline Personality Disorder’ should be redefined as a form of Complex Post-­ Traumatic Stress Disorder—a confusing response to a violent and confusing world (Kulkarni, 2017). In sum, the intersection between women and madness would seem, in critical analysis, to involve responses to expectations of femininity which can be very extreme and which are played out at both systemic (disciplines, therapies, institutions) and interpersonal levels. I hope to have shown that the concept of intersectionality here is useful as it tells us much more than an analysis would that just added together aspects of being a woman with aspects of madness that overlap in some way. It does not appear, from the critical literature, that ‘mad women’ are categorically different from women to whom that label has not been attributed but that their journey through a social structure premised on ‘what a woman should be’ has led to responses of heart break and break down or a punishment for violating these norms.

Practice Life does not begin and end in academia although there are complex relations between them. Whilst academics were beginning to write, some of them also became involved in collectives designed to help women with problems understood as consequences of power. And of course, not all involved were academics. One of the longest-standing, the Women’s Mental Health Collective in Cambridge, Mass, opens its website with this statement: We are aware that we have been shaped and constrained by a society in which some groups have more power than others. At the same time, we believe that people have the capacity for growth and connectedness, and that therapy can help people find more effective and satisfying ways of living.

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https://www.idealist.org/en/nonprofit/992cd2dc453845a7bd8e05e2 bef68f03-­womens-­mental-­health-­collective-­cambridge (last accessed 18/06/21)

This group concentrates on distress associated with women’s relationships with, mostly, violent men such that alcohol use is a salve; domestic violence leads to extreme anxiety coming from living in a frightening relationship. But these are underpinned by the power of a ‘group’—they are not random individual events but socially structured. The collectives were also run along democratic and non-judgemental lines and another group, the SKILL collective, has a service user charter which guides the organisation. Again, they focus on ‘conditions’ which we could call ‘struggling with positions of subjugated femininity’—eating distress, self-harm, depression and anxiety, and alcohol and street drug use. They put it like this: The weight of expectations—whether they are social, cultural, externallyor self-imposed … trying to live up to these expectations can often lead to significant stress and poorer mental health https://theskillcollective.com/womens-­health (last accessed 18/06/21)

These two organisations are in the USA and there are many more. In Berlin there is the ‘Runaway House’ where people can go for time out but it is not widely publicised for reasons of secrecy. In Bristol currently there is a ‘Women’s Crisis House’ which has charitable funding and offers an array of services. They seem, to my eyes, to be less influenced by feminist analysis than the others. However, they do take a social justice approach in that its User Charter begins: We are aware that domestic and sexual violence and mental ill health occur in all cultures and communities. We will actively promote equality, fairness and respect. We will ensure that all people engaging with our services are treated with courtesy, empathy and dignity. www.missinglinkhousing.uk (last accessed 18/06/210)

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This crisis house was preceded in the 1970s–2000s by the Bristol Women’s Crisis Line which offered telephone support for those who self-­ harmed. It was a much-valued service and took a ‘harm minimisation’ approach. This is common and accepted for those who use substances but, as I said, tends to evoke outcries when you say the goal is that self-­ harm should be safe, not stopped. In mental health it has been advocated by Pembroke (Pembroke, 2005). But as with the survivor groups discussed in Chaps. 1 and 2, these services are precarious and funding an ever-present problem. They are creating embedded knowledge but, to put it bluntly, it is not wanted and they are not wanted because they violate the mainstream narrative.

Mad Politics As described in Chap. 1, in the last decades of the twentieth century there was also the emergence of numerous groups with names like ‘the Mad People’s Liberation Front’ or ‘Mad Organising in California’. They took an anti-psychiatry view influenced by Thomas Szasz, believing mental illness was a myth and a creation of the pharmaceutical industry for profit (Szasz, 1976). They followed Szasz in conceiving distress as ‘problems of living’ and his proposed solution was private counselling. That last, rather neoliberal quest, is not spoken about so much. I once met Szasz and he asked me what I did for a job. I explained that I was not working because of a psychiatric diagnosis. His one-word response was: ‘malingerer’. These groups also ‘performed’ their madness, dressing in elaborate costumes, dancing and hugging each other publicly. There was a good streak of humour too (Chamberlin, 1990). In Canada, there was a magazine printed in Ontario called Pheonix Rising, a hopeful title. I have said more about this in the introduction to the book and this form of organising could be seen as the precursor to the now world-wide Mad Pride movement (Curtis et al., 2011). What I cannot discern, however, is any sustained attention to the position of women in this counter-culture of madness. However, the literature is scattered and much of it lost if we include pamphlets, booklets, essays and so on, so there may have been some work and activism at the time. On the other hand, there may have been stigma within feminist circles.

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Feminist Therapy and Structural Violence Trying to understand the intersection between being female and being emotionally distressed brings us straight to the relation between individual and social. Women are the harbingers of society’s emotional life (whether they like it or not). On the other hand, women are killed by their partners—two a week in the UK at the moment. There is a massive friction between the requirement to be a loving mother and partner and the real risk of abuse. And society and the legal system have been criticised for their minimal responses ever since Erin Pizzey opened her women’s shelter in the 1970s. These criticisms extend internationally (Chinkin, 2017). A slogan in the early days of the women’s movement was ‘the personal is political’. In this section, I have tried to show the multiple modes in which being a woman mean madness is represented, experienced and dealt with in specific ways, ways that differ to those of men although I have not spelled that out at length. The ‘mad woman’ is a rhetorical figure; it is also helpful to see this position and identity as an intersectional one. There is one issue with which I would like to conclude. Susie Orbach’s book Fat is a Feminist Issue is an incisive analysis of how the political gets inside your head and body; that the personal is political (Orbach, 1998). But some feminists at the time took the view that the ‘obsession’ with the ‘personal’ had gone too far and that for some ‘the political is the personal’. This may signal a risk in the focus on ‘the psyche’ with its individualistic overtones and a place for concepts of structurally produced ‘social suffering’ (Farmer, 1996; Farmer et al., 2004). The references to power and images of women I have described mean that the person in distress has context, they are not de-contextualised as is the case with most mental treatment, especially psychological (Holmes et  al., 2018; Richardson & Zeddies, 2001). The situation is complex, however, when one gender group is charged with the care and nurturing of other individuals in a way that enables those individuals to thrive, even though this is underpinned by a system that privileges masculinity and can be violent in the extreme. In terms of the intersection between women and

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madness, here we have an obvious difference with men at least as imagined. (Men’s madness has classic associations with danger and violence, which I will come to.) Put this way, there is a clash, a knowledge clash, with how women’s madness is represented in the mainstream. For much of mainstream research is neurological or hormonal—looking for structural and functional differences in the brains of men and women to account for diagnostic differences; seeing social suffering such as domestic violence as a ‘symptom’ in the abused woman as I found in research on this question; pathologising the menstrual cycle as source of anxiety and depression (Lande & Karamchandani, 2002; D.  Rose et  al., 2011). The forms of knowledge are completely different but the mainstream supervenes, which is not to say there is no crack in the wall. And it is the cracks we must open up. So now I turn to the intersection between madness and racialised communities, diasporic or settler-dominated communities as I explained. This functions as a second example of how useful the concept of ‘intersectionality’ might be—how, when and where.

Racialisation and Madness in the West I am a woman. I am sometimes mad. I am disabled. And I am white. This last means I cannot write from the experience of being a Black person, knowledge-maker or activist. Some may argue I should have found a co-­ author for this section but finding a co-author at all is difficult, for reasons that cannot be made public. So I have decided to include this white rendition of the place of Black users and madness in the West because not to would commit the opposite sin of absenting—absenting Black survivors from the book and absenting myself of the responsibility of writing about a group who are subjugated by the colour of their skin. Clearly, not only in respect of mental health but systematically throughout all our social systems and structures. If it is true that white service users are silenced sometimes on epistemic and semiotic grounds, for Black people the silencing is more often direct. And it can be fatal, which is not to say there is no problem

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of language and meaning, but there is another layer of subjugation and that is institutional violence. And yet, in my reading of it, Critical Race Studies, Post-Colonial Theory and Black activism are much more in tune with the central tenets of critical theories than are mental health system survivors who are white. I emphatically do not mean that they are the ‘same’ as feminism or LGBTQ+ people; I mean in the approach to the work, conceptual and in terms of activism. And I will address the argument that the mental health user movement is a white mental health user movement. This, however, does not remove psy from the lives of Black communities and individuals. Academia and particularly anthropology have a long history in engagement with other ‘races’ and there is an abundant literature from every perspective dating from the seventeenth century. I cannot do this justice but the whole corpus has been analysed and critiqued by Critical Race Theory (see Delgado and Stefancic for an Introductory text (Delgado & Stefancic, 2017)). A telling example is the work of people like Sir Francis Galton who was to be enormously influential in the eugenics movement in the early twentieth century. I do not mean that Galton was in some way exceptional, the work he conducted did not begin with him or any one person, it was replicated, added to and critiqued. I choose to write about Galton as he is emblematic of a type of person and type of reasoning that was hegemonic in Europe for 300 years. So I will again ask, in this case with respect to ‘race’, whether these approaches belong to history or whether the past still exists somehow in the present. And whether this past is represented now in academia and beyond or is buried. And if it is buried, what forces prevent academia from surfacing it? As well as there being contemporary specific issues, clearly. Galton invented the ‘normal’ curve which gave technical and statistical shape to the idea of ‘progress’ of people or of cultures—from the very lowest to the very highest forms, the latter always the European. He and others set out to show that the minds of non-Europeans were incapable of reason because of the physical characteristics of their heads and brains. It is important to note there was no tight distinction between what we know as ‘learning difficulties’ and ‘mental illness’ at that time. In New Zealand, Galton measured the skulls of Maori peoples—naming this sub-discipline ‘craniometry’. He and others of the same bent wanted to

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show that their skulls, and therefore brains, were smaller and of a different shape than those of Europeans and that the ‘frontal cortex’, seat of logic and thinking, was smaller. Difference meant deviance intellectually and in terms of moral capacities, both sited in the physical characteristics of the nervous system (Challis, 2013; Cupples & Grosfoguel, 2018; Smith, 2021). It is not so far from the ‘race and IQ debate’ which has recently been revived with the physical determinants being genes and differences revealed in brain imaging (Plomin & von Stumm, 2018). From New Zealand, such teams of proto-anthropologists travelled through Africa measuring and measuring people’s bodies and especially their heads. This crystallised the emerging idea of eugenics—the need to preserve the (white) stock by controlling breeding. The end point of ‘degeneracy’—an important concept at the time—are those whose mental capacities are so limited they are worth nothing. The mad (most prominently the ‘syphilitic’) and the ‘feeble-minded’ occupied this position as the end point of multiple abnormalities passed through families. But Galton, in fact, coined the term ‘eugenics’. As I said, it must not be thought that Galton was some kind of Victorian eccentric. Many people, including on the Left, subscribed to eugenic doctrines. Marie Stopes was a eugenicist but that is not mentioned as the basis of her reform of women’s reproductive rights. But it was the basis. The Webbs—who founded the London School of Economics—equally were of that persuasion. The sociologist Richard Titmus deemed eugenics the only ‘real’ social science. And one of the participants in the interview study had unearthed a text, from the USA, where a doctor likened slaves to monkeys. This is not to exonerate Galton but show how widespread the idea was. It took the holocaust to make the field unacceptable. And the mentally disabled went to the Gas Chambers first. And Sweden did not repeal its eugenics laws until 1976. Many Victorian anthropologists were travellers and brought back ghastly and ghostly stories about the lives and beliefs of ‘primitive’ peoples. The more statistically inclined had a field day, measuring human kind from every conceivable angle: but actually from one angle: the belief in a ladder of progression from the most barbaric to the most civilised (white Europeans). The anthropologist credited with the beginnings of critiquing these tales was Franz Boas who wrote on the differences in

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‘Race, Language and Culture’ between different societies (Boas, 1982). No one would defend him today, but we find in his writings a requirement that anthropology study ‘its own White culture’ and a chastisement of himself for using the word ‘primitive’—and then continuing to use it. He is as committed as the rest to measurement but at least applies it to rocks and mountains in an effort at an archaeology, a history and physical context for humans. To neutralise the ‘from barbarism to civilisation’ ladder he proffers some generalities although they have not completely shed the idea of progress itself. But Boas has no theory of the ‘disturbed’ mind. At the same time, he reserves some of his strongest diatribes for those ‘travellers’ that claim that barbarians have no logic, no reason, no social order, are violent and devoid of moral sense. I sense a connection between those ‘travelling gentlemen’ and some contemporary thought in ‘psy’— science and public. Philosophers today equate lack of reason with lack of moral sense. But does this have any bearing on the intersection between ‘race’ and mental life including madness? I will demonstrate some of these continuities, and also changes, in respect to children excluded from school. Amiel Joseph mentions this as highly significant in the ‘lived experience’ of racialised groups, and I have referred to this paper already (Joseph, 2019). So the intersection here is the Black child (boy) and the educational system. There were two kinds of institutions for excluded children in the 1970s—those for the ‘educationally subnormal’ and those for the ‘maladjusted’. In 1971, Bernard Coard wrote a book called How the West Indian Child Is Made Educationally Sub-normal in the British School System: The Scandal of the Black Child in Schools in Britain (Coard, 1971). Note that the word sub-normal appears in the title. Coard detailed how any achievement on the part of pupils was downplayed and any below-average work was multiplied in its significance and used to validate the exclusion. These were the children of the Windrush Generation and the teachers, mainly white, did not hold back in their racist appraisals of the children’s work. They were mostly boys (this is still the case) and enrolment in such schools was supposedly via the child’s score on an IQ test. This again harks back to the idea that intelligence can be ranked—via the ‘normal’ curve—and so the idea of the ‘educationally sub-normal’ fits within this discourse. It

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has been suggested that the word ‘normal’ has three meanings—statistical, typical and moral (N. Rose, 2007). Although Coard focused on boys, recently Victoria Bulley has written of similar behaviour and denigration of her work in school as a West Indian girl today. She entitles her paper “Is this yours? Did you write this?” (Bulley, 2019). Her work was of a high standard and the result was that the teachers did not believe she had done it herself. She was disbelieved as to her authorship of her own work, because it was deemed impossible that ‘clever girls’ could be ‘black girls’. Bulley goes on to say that although she attained two degrees, she is still disadvantaged in the labour market through racism, she is still living at home. Coard’s work is much cited and in 2020 was the subject of the last in a film anthology directed by Steve McQueen. The anthology was one of resilience and resistance entitled: Small Axe. Love letters to black resilience and triumph in London’s West Indian community, The last film in the collection is a dramatization of Coard’s book. But Bulley’s account shows that these ideas are alive today, if altered. Up to now I have certainly addressed the question of racialisation and mental life. I have found a more robust political argument around intellectual capacity than around mental health, which may be my limitation. Recently Samara Linton and Rianna Walcott edited ‘The colour of madness’ which is an anthology of encounters between women of colour and ‘mental health services’ (Linton & Walcott, 2020). Much of it is about psychotherapy and speaks to how white therapists systematically mis-­ read the distress of women of colour. Walcott has also given an interview in which she said: I’m thinking about some of the experiences I’ve had with different counsellors where I’ve definitely felt a need to perform my mental health in a specific way in order to get the help I needed. (Hysterical Women n.d.)

‘Performativity’ is a concept with a high currency in critical theory but here Walcott seems to be saying that she has to ‘translate, bodily as well as in words’ her distress for the benefit of the therapist, to get the help she wants. The intersection between race and distress evokes almost a disavowal of the self.

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There are interviews like this scattered across the internet which may relate to the documented lack of access to ‘talking therapies’ for people of colour, in addition to eligibility being racialised. Which speaks again to the limitations in the concept of ‘experience’ because Western therapy is based in an alien register, to use a linguistic term.

The Sharp End of Psychiatry Continuing with the present, it is well known in the field that those racialised minorities who come in contact with the psy system have a consistently and systematically worse time than their White counterparts. More diagnosis of psychosis, the police as a main pathway to care, more sectioning and greater use of control and restraint, physical or chemical tranquilisation and ECT.  Suman Fernando says he has used the same slide for 20 years with the same statistics as nothing has changed in that time (Marecek, 2021). In the last couple of years he has had to update as things had got worse. The UN Convention for the Rights of Disabled People Implementation Committee visited England (which has ratified the Convention) in 2018. They found the country had not implemented or had thwarted every single article in the Convention and singled out the treatment of Black People by psychiatry as of particular concern. Indeed, this was the only reference to people with psychosocial disabilities in the entire report (Equality et al., 2018). I have witnessed these statistics, in the flesh, whilst hospitalised. I lived in a part of London with a high West African population and there wasn’t any doubt about who was jumped on the most (by staff in order to restrain). A man from Ghana gave me a very detailed account of colonialism in his country of origin. We had quite a lengthy conversation which I remember well. Then he told me he had just been given a diagnosis of paranoid schizophrenia. Because of what he said about Ghana. I was shocked thinking such things belonged to ‘the past’. I should not have been. The past is in the present here as elsewhere. I also concluded that men had a worse deal than women in in-patient wards and this was particularly so for Black men. This appears to be connected to beliefs about dangerousness and violence being associated with Black men and so it is

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figured as a ‘risk’. In the sectioning process, it has been argued that ‘risk’, particularly ‘risk to others’, is the chief criterion for involuntary detention, not diagnosis (Szmukler & Rose, 2013). My memory counts only as another anecdote, to be sure. But, oddly enough, an anecdote at least consistent with the statistics. Although, recent data are indicating that this patterning is happening to women too. The stereotype of violence can also be found in Metzl’s The Protest Psychosis (Metzl, 2010). Using hospital records, he compares the kinds of people who received a diagnosis of schizophrenia in the early 1950s and in the late 1960s. In the earlier period the typical person was a woman who was failing in her duties as wife and mother. But by the late 1960s there was almost a complete reversal; the typical recipient of the label was a Black man given to expressions of anger. Emblematic of this was the Black Power salutes given by winners at the Olympic Games in Mexico in 1968. There was actually a diagnosis: ‘protest psychosis’. It exists no longer but its legacy lingers. Of course, there has been opposition at the level of theory, of practice and of the arts. Errol Francis is a community Black activist and creative producer. In the 1980s and 1990s he worked with Asian psychiatrist Sashi Sashidharan and other activists, community workers and professionals to undertake a critique of psychiatric practice and offer alternatives with respect to people of colour who had come into contact with psy (Francis et  al., 1989). This paper emphasises practice but also situates its arguments in terms of Eurocentrism and racism which the 1989 paper says it does not have time to deal with. But then, spurred by the McPherson Report into the murder of Stephen Lawrence, a Black man, the authors did undertake a short but focused piece on how Eurocentric ideas permeated the treatment of Black service users in the UK and beyond (Sashidharan & Francis, 1999). One of the outcomes of this work was the development of Home Treatment Teams—the idea that people could stay at home (rather than be hospitalised) supported by mental health staff visiting as often as necessary. These were not specific to people of colour and, for many, soon became just a ‘medication drop’ although there are multiple Randomised Controlled Trials which apparently show good ‘outcomes’, including when ‘peers’ are involved (Lloyd-Evans et al., 2014; Wheeler et  al., 2015). So this was an initiative of activists and

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professionals of colour to make something possible in place of the institution that would also tackle the racism and individualism endemic in services. It was semi-­successful in the first aim, the second was drowned out by unmet promises of ‘equal treatment’, impossible promises given structural racism. However, for a short while there was money available. In terms again of research, a team at the then Sainsbury Centre for Mental Health (SCMH) conducted a project called ‘Circles of Fear’ (Keating et  al., 2002). Keating and colleagues argued that there was a vicious spiral whereby users from the Caribbean and Africa (Black users is their preferred term) got services from mental health which they did not want and not the services they might want. There was considerable fear by staff of Black communities, consistent with the focus groups we conducted for VOICE (Chap. 8). Staff said they feared violence and their anticipation of this resulted in coercive measures—exactly what prompted fear in the in-patients when it came to hospital but in the community as well. This was concentrated on young Black men. The authors called this not just a vicious ‘circle’ of fear but a spiral because it inevitably escalated. They made some recommendations designed to break the circle, at the level of awareness raising, activities and layout of facilities. Two years later, Frank Keating and David Robertson summarised the project, concentrating on the nature of these fears, and the targets being Black service users, the latter because of epidemiological as well as qualitative evidence (Keating & Robertson, 2004). Amassing other studies which support their concentration on fear, they say: The situation is fuelled by prejudice, misunderstanding, misconceptions and sometimes racism. (p. 439)

Different fears are examined—stigma, the link with other agencies such as police and prisons and fear of ‘mental illness’ itself. For Keating and Robertson these fears are the basis of the ‘Othering of black people’ and so are fundamental to racism. Consequently, they are extremely hard to dislodge. Stigma, incidentally, is a tricky term as witness the example of a Maori informant in Chap. 7. Maori do stigmatise mental illness but not because of the condition. It is stigmatised because it is a Western idea alien to Maori culture.

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The fate of racialised groups in English higher-level politics is long, complicated and, obviously, colonial (Sooben, 1990). There was, however, a little documented period when a scheme operated to make funds available to ‘improve race relations’ in England. The legal details are complicated but the Hansard record is illuminating (Local Government Grants, Ethnic Groups Bill, 30 April 1980, commence 6.47 pm). The debate concerned the distribution of monies by local ‘Councils’ (local government) to alleviate racial discrimination. It was argued that some monies should go to the Black voluntary sector, including small groups. The scheme was subsumed (disappeared) with the passing of the Equalities Act 2010 but during this time, some small Black voluntary organisations, including ones devoted to mental health, were funded. Being supported by Councils meant that the groups were local, accessible and some at least operated on grassroots principles. Many were successful despite the bureaucracy but with the end of the scheme many of the groups, mental health ones included, were forced to close. It shows, however, the importance of small, grassroots, community organising for this group and, presumably, beyond. And that it needs money to survive. This is, frankly, obvious but it met with resistance from white policy makers fearful of ‘re-ghettoization’. A final discourse that needs to be invoked is that of ‘transcultural psychiatry’ (Lipsedge & Littlewood, 2005). The argument was that Black Caribbean people especially inhabited a culture which mainstream psychiatry did not understand. They did not have the ‘cultural competence’ to understand their patients. The solution was to train up psychiatry students so that they would acquire this cultural competence and there would be greater ‘understanding’ of such service users and their backgrounds. However, this position was criticised for ignoring political and economic factors. Kobena Mercer queries this emphasis on ‘culture’ and ‘attitudes’ and calls on transcultural psychiatry to take on an explicitly anti-racist stance (Mercer, 1984). He makes the point that only Black communities can see this difference. However, latterly this has been taken on board and Jonathan Metzl in the USA makes a call for ‘structural competency’ to be included in the medical curriculum (Metzl & Hansen, 2018). But he is as yet a lone voice. Nevertheless, his call is backed by the work of indigenous scholar

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Joseph Gone who works on ‘intergenerational trauma’ in Canadian First Nation societies and calls on transcultural psychiatry and community psychology to shift its individualism (Gone, 2013, 2016). Trauma again, but socially understood.

A White Survivor Movement Finally, we need to face the fact that the user movement in the Global North is a White user movement, men and women, and that the field of user research likewise is White. As I have said in respect of Disability Studies, this has been argued in detail by Chris Bell (Bell, 2010). In a large survey plus ethnographic study of the user movement in England, I myself interviewed eight survivors who were deeply involved in some work for the government (Wallcraft et al., 2003). I have already recounted the experience of the Black representatives on this group. Racism from white survivors and querying their mental capacities by Black professionals, all the eight people I interviewed left the Committee before the end of the work but for the two Black participants it was because of this intersecting discrimination on grounds of both skin colour and mental distress. Why is the survivor movement white? This is not peculiar to the UK, practically the whole of the European Network is white, but the reasons I give are from experience in that country. From the 1970s onwards the most common reason white people gave for the movement’s inability to include service users from racialised groups was that “they wanted to organise on their own”. Some did, for safety’s sake. But, in effect, it was an act of exclusion and silencing at the level of racialised groups as a whole (Kalathil, 2010). An act of exclusion based on the misrecognition of a double discrimination and one that was not additive. The mainstream research establishment and some mad activists like to ask whether ‘activists/members of user groups are representative of ordinary users?’ (Crawford & Rutter, 2004). They conclude that Black users are not part of the white user movement and struggle to develop one of their own or have it rejected. But they do not address ‘why’ there is this struggle, indeed if there is a struggle because there was a Black survivor movement

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at that time but it was not visible to the mainstream one. Some turn to history. Barnes and Shardlow propose that it is because black groups have an ‘identity crisis’ that makes it difficult to interact with other survivors (Barnes & Shardlow, 1996). They give no reason why white people with mental distress should not themselves have such a crisis but of different contours. This can return us to ‘whiteness’ as the unmarked category in the Survivor Movements. There are commonalities which I alluded to earlier, such as the proposed lack of reason on the part of Foucault and others. “Can non-Europeans think?” asks Dabashi (Dabashi, 2015). But despite the similarities this has not led to a common politics. One way to surface that this is a form of racism on the part of the mainstream user movement is to replace every reference to ‘racism’, ‘racial discrimination’ and so on in this book with ‘white’ and ‘whiteness’. And see how that reads. But language cannot give us all the answers and goals; it is down to basics of being starved of resources and excluded from meetings, conferences and workshops. Publishing is also difficult and mostly restricted to the NGO sector at best, even where the work is innovative (Kalathil et al., 2011). Indeed, the entire system of research is not a welcoming space for researchers from racialised groups and this is, again, partly because of the focus on health which drags the argument away from other aspects of this subjugation, as Amiel argues (Joseph, 2019). In sum, there are elements in modern racism that hark back many centuries and they include killings. In times of slavery we had Drapetomania and in terms of civil rights we had the Protest Psychosis. When football fans throw bananas on the pitch and make monkey noises, they are consistent with the idea of a ‘ladder’ of civilisation whether they know it or not. The UK has been damned by the United Nations for its treatment of young Black people in mental health services and its response was to commission a report that nearly everyone found deeply disappointing because it focused solely on individual attitudes and interpersonal relations (Commission on Race and Ethnic Disparities, 2021). There was no mention of structural racism and the section on mental health was partial in the extreme. The intersection between race and madness is also a gendered one and its contours are different for men than for women. The ‘mad black person’ can be seen as an intersecting position in my view and conceiving it so has implications. For example,

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should this group have specific dedicated services? In respect of research, we should understand that Black groups are not ‘hard to reach’ or ‘difficult to engage’. They are very often leading difficult lives characterised by multiple adversities. And communities are doing most of the supporting. These ways of living mostly do not connect with the world of research. And yet it is vital that these voices are heard. And this means that research structures and personnel need to change, not the people of interest. The very place of research has to change. That we can describe an intersection between race and madness at one level is helpful (Costa et al., 2012).

Problems But there are some problems. Considering what I have just said about people’s conditions of life, I would argue that the concept of intersectionality will not be amenable to understanding such complexity. There are questions about which oppressions to include in a piece of work but it quickly gets out of hand. Suppose Bernard Coard’s ‘sub-normal’ Black boys also had mental health challenges, suppose some of them were trans? This is just an example but reveals that the concept of ‘intersectionality’ probably best deals with simple and quite general connections. This is important as I have used terms like ‘multiple adversities’ quite frequently and am not sure that the concept can drill down to the necessary level of detail and complexity in practice. It functions best as an orienting principle. The second problem is more general and I will devote the next chapter to it. It starts with an absence, or almost absence—the absence of a body of work that utilises critical theories to analyse the experience, the openings, the exclusions and the pathologisation of those labelled ‘mentally ill’, including with intersecting identities. Although the literature is growing, and conferences are happening, there is nothing like the focus and quality that characterises, say, Post-Colonial Studies or Feminist Standpoint Epistemology. The closest we have is Mad Studies (Burstow, 2015; Menzies et  al., 2013). The aim is to ‘go beyond critique of the medical model’ to explore the positive things that mad people do for themselves. I touched on this in Chap. 4. But the flurry of texts published

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in the late 2010s has slowed down and the evidence is ambivalent in terms of research being a vehicle of empowerment, which is not to say there is an absence of important work, for example, by Lucy Costa (Costa et al., 2012), Jijian Voronka (Voronka et al., 2014) or Brenda le Francois (Menzies et  al., 2013). There are writers in Europe too (Beresford & Russo, 2016; Russo, 2012). These are all published authors and of course there are others. But does this add up to the ‘embryonic discipline’ it claims? I shall deal with this in the next chapter but if it does not, the question becomes: why is madness all but missing from critical theories? I started addressing this in Chap. 2. This chapter on intersectionality does not explain this but it is part of the picture. There is also the issue of disciplinary structures as such, adding to the question of where such work sits. My own work has largely been published in psychiatry or psychology journals which is very unsettling. So in the next chapter I will be exploring this lacuna using concepts like normalisation, individuation, contextualisation, Othering, social suffering and epistemic injustice and some data from empirical research. And I shall try to sketch a pathway to an underpinning set of epistemologies or principles to tie together the work that has been done so that progress can be made. One reason for this closure around madness is that the academy itself never reflects on the more abhorrent aspects of its own history. As I say, there are cracks in the wall but the cracks for us, for the mad, are like fine lines on plaster. The task is to open them up.

Conclusion I have documented the work above largely because it is absent from the academy although known about in some activist circles. The academy, it seems, does not like to reflect on its own past and presents us with a Whig interpretation of history—uninterrupted progress towards an excellent present (Butterfield, 1965; Wilson & Ashplant, 1988). It represents itself as benign and moving always towards progress. And so it ‘forgets’ how it has represented and acted upon the very groups it now subjugates but, on the whole, in less brutal language. ‘The liberal academy’ is no such thing;

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it has an underside that has to be suppressed for its official history to hold. To do this they have to bury the past, knowingly or not, and part of this chapter has been to excavate that past. For example, students learn about the ‘normal curve’ in statistics classes as if it was a ‘fact’. They learn nothing about its history and where this ubiquitous ‘fact’ came from. And from this follows literally hundreds of thousands of studies, some more tainted than others. Even the critical debate about IQ did not mention this history (Lewontin et al., 1993). Hidden from history to make the present respectable (and neutral). I end with one more piece of autobiography. I once wrote in a draft paper that Henry Maudsley, founding father of British Psychiatry, was a eugenicist. The sentence was struck out by the senior author. “But it’s true” says I. “That doesn’t matter” came the response. An anecdote, yes, yet it says a lot. But we are culpable too although I hope we do not condone self-conscious lying by omission.

References Barnes, M., & Shardlow, P. (1996). Identity crisis: Mental health user groups and the ‘problem’ of identity. Leeds. Bell, C. (2010). Is disability studies actually white disability studies. In The disability studies reader (pp. 374–382). Taylor & Francis. Beresford, P., & Russo, J. (2016). Supporting the sustainability of Mad Studies and preventing its co-option. Disability & Society, 31, 1–5. Boas, F. (1982). Race, language, and culture. University of Chicago Press. Bonnington, O., & Rose, D. (2014). Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: A critical realist analysis. Social Science & Medicine, 123, 7–17. Brekhus, W. (1998). A sociology of the unmarked: Redirecting our focus. Sociological Theory, 16(1), 34–51. Bulley, V.  A. (2019). Is this yours?… Did you write this? In Clever Girls (pp. 285–289). Springer. Burstow, B. (2015). Psychiatry and the business of madness: An ethical and epistemological accounting. Palgrave Macmillan. Butterfield, H. (1965). The Whig interpretation of history. WW Norton & Company.

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Challis, D. (2013). The archaeology of race: The eugenic ideas of Francis Galton and Flinders Petrie. A&C Black. Chamberlin, J. (1990). The ex-patients’ movement: Where we’ve been and where we’re going. Journal of Mind and Behavior, 11(3), 323–336. Chesler, P. (2018 [1972]). Women and madness. Chicago University Press. Chinkin, C. (2017). Rape and sexual abuse of women in international law. Routledge. Coard, B. (1971). How the West Indian Child is made educationally sub-normal in the British school system: The scandal of the black child in schools in Britain. Beacon Press. Commission on Race and Ethnic Disparities. (2021). Report of the Commission on Race and Ethnic Disparities. London: Commision on Race and Ethnic Disparities (UK). Costa, L., Voronka, J., Landry, D., Reid, J., Mcfarlane, B., Reville, D., & Church, K. (2012). “Recovering our stories”: A small act of resistance. Studies in Social Justice, 6(1), 85. Crawford, M., & Rutter, D. (2004). Are the views of members of mental health user groups representative of those of ’ordinary’patients? A cross-sectional survey of service users and providers. Journal of Mental Health, 13(6), 561–568. Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43, 1241–1299. Cresswell, M., & Spandler, H. (2013). The engaged academic: Academic intellectuals and the psychiatric survivor movement. Social Movement Studies, 12(2), 138–154. Cupples, J., & Grosfoguel, R. (2018). Unsettling Eurocentrism in the Westernized University. Routledge. Curtis, T., Curtis, T., Dellar, R., & Esther, L. (2011). Mad pride. Chipmunka Publishing Ltd. Dabashi, H. (2015). Can non-Europeans think? Blackwell. Delgado, R., & Stefancic, J. (2017). Critical race theory: An introduction (Vol. 20). NyU Press. Equality, Commission, H.  R., Commission, S.  H. R., & Commission, N. I. H. R. (2018). Progress on disability rights in the United Kingdom. Geneva. Farmer, P. (1996). On suffering and structural violence: A view from below. Daedalus, 125(1), 261–283. Farmer, P., Bourgois, P., Fassin, D., Green, L., Heggenhougen, H., Kirmayer, L., … Farmer, P. (2004). An anthropology of structural violence. Current Anthropology, 45(3), 305–325.

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Fonagy, P., & Bateman, A. (2006). Progress in the treatment of borderline personality disorder. The British Journal of Psychiatry, 188(1), 1–3. Fonagy, P., & Target, M. (2000). Mentalization and personality disorder in children: A current perspective from the Anna Freud Centre. Paper presented at the Annual Meeting of the Association for Child Psychoanalysis Inc., March 1997, Cancun, Mexico; A shortened version of this chapter was presented, Mexico. Francis, E., David, J., Johnson, N., & Sashidharan, S. (1989). Black people and psychiatry in the UK: An alternative to institutional care. Psychiatric Bulletin, 13(9), 482–485. Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press. Gilman, S. L., Gilman, S. L., King, H., Porter, R., Rousseau, G., & Showalter, E. (1993). Hysteria beyond Freud. University of California Press. Gone, J. P. (2013). Redressing First Nations historical trauma: Theorizing mechanisms for indigenous culture as mental health treatment. Transcultural Psychiatry, 50(5), 683–706. Gone, J. P. (2016). Alternative knowledges and the future of community psychology: Provocations from an American Indian healing tradition. American Journal of Community Psychology, 58(3–4), 314–321. Holmes, E. A., Ghaderi, A., Harmer, C. J., Ramchandani, P. G., Cuijpers, P., Morrison, A. P., … Shafran, R. (2018). The Lancet Psychiatry Commission on psychological treatments research in tomorrow’s science. The Lancet Psychiatry, 5(3), 237–286. Hooks, B. (1982). Ain’t I a woman Black women and feminism. Pluto Press. Hornstein, G. A. (2017). Agnes’s jacket: A psychologist’s search for the meanings of madness. Revised and updated with a new epilogue by the author. Routledge. Jamison, K. R. (1995). An unquiet mind: A memoir of moods and madness. Knopf. Joseph, A.  J. (2019). Constituting “lived experience” discourses in mental health: The ethics of racialized identification/representation and the erasure of intergeneration colonial violence. Journal of Ethics in Mental Health, 10, 1–23. Kalathil, J. (2010). Beyond tokenism: Participation of mental health service users from racialised groups in mainstream user involvement initiatives. Agenda, (34), 16–18. Kalathil, J., Bhakta, R., Daniel, O., Joseph, D., & Trivedi, P. (2011). Recovery and resilience: African, African-Caribbean and South Asian women’s narratives of recovering from mental distress. London: Mental Health Foundation.

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Keating, F., & Robertson, D. (2004). Fear, black people and mental illness: A vicious circle? Health & Social Care in the Community, 12(5), 439–447. Keating, F., Robertson, D., McCulloch, A., & Francis, E. (2002). Breaking the circles of fear: A review of the relationship between mental health services and African and Caribbean communities. London. Kulkarni, J. (2017). Complex PTSD—A better description for borderline personality disorder? Australasian Psychiatry, 25(4), 333–335. Lande, R.  G., & Karamchandani, V. (2002). Chronic mental illness and the menstrual cycle. Journal of Osteopathic Medicine, 102(12), 655–659. Lewontin, R. C., Rose, S., & Kamin, L. J. (1993). IQ: The rank ordering of the world. In The racial economy of science (pp. 142–160). Penguin. Linton, S., & Walcott, R. (2020). The colour of madness: Exploring BAME mental health in the UK (S. Linton & R. Walcott, Eds.). Stirling Publishing. 2018.£ 7.19 (pb). 250 pp. ISBN 9780992651442 (Vol. 44). Lipsedge, M., & Littlewood, R. (2005). Aliens and alienists: Ethnic minorities and psychiatry. Routledge. Lloyd-Evans, B., Mayo-Wilson, E., Harrison, B., Istead, H., Brown, E., Pilling, S., … Kendall, T. (2014). A systematic review and meta-analysis of randomised controlled trials of peer support for people with severe mental illness. BMC Psychiatry, 14(1), 39. Marecek, J. (2021). Suman Fernando, Institutional racism in psychiatry and clinical psychology: Race matters in mental health. SAGE Publications and Sage UK. Menzies, R. J., LeFrançois, B. A., & Reaume, G. (2013). Mad matters: A critical reader in Canadian mad studies. Canadian Scholars Press. Mercer, K. (1984). Black communities’ experience of psychiatric services. International Journal of Social Psychiatry, 30, 22–27. Metzl, J. M. (2010). The protest psychosis: How schizophrenia became a black disease. Beacon Press. Metzl, J.  M., & Hansen, H. (2018). Structural competency and psychiatry. JAMA Psychiatry, 75(2), 115–116. Midgley, C. (2007). Feminism and empire: Women activists in imperial Britain, 1790–1865. Routledge. Millet, K. (1990). The loony bin trip. University of Illinois Press. Nash, J. C. (2008). Re-thinking intersectionality. Feminist Review, 89(1), 1–15. Orbach, S. (1998). Fat is a feminist issue: The anti-diet guide for women+ Fat is a feminist issue II. Random House.

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Paraschiv, C. I. (2017). The role of education in poverty alleviation. Theoretical & Applied Economics, 24, 116–134. Pembroke, L. R. (2005). Self harm. London: Chipmunka Publishing Ltd. Plomin, R., & von Stumm, S. (2018). The new genetics of intelligence. Nature Reviews Genetics, 19(3), 148. Richardson, F. C., & Zeddies, T. J. (2001). Individualism and modern psychotherapy. In B. D. Slife, R. N. Williams, & S. H. Barlow (Eds.), Critical issues in psychotherapy: Translating new ideas into practice (pp. 147–164). Sage Publications, Inc Rose, D., Trevillion, K., Woodall, A., Morgan, C., Feder, G., & Howard, L. (2011). Barriers and facilitators of disclosures of domestic violence by mental health service users: Qualitative study. British Journal of Psychiatry, 198(3), 189–194. https://doi.org/10.1192/bjp.bp.109.072389 Rose, N. (2007). The psychlogical complex. Routledge. Russo, J. (2012). Survivor-controlled research: A new foundation for thinking about psychiatry and mental health. Paper presented at the Forum Qualitative Sozialforschung/Forum: Qualitative Social Research. Russo, J. (2016). In dialogue with conventional narrative research in psychiatry and mental health. Philosophy, Psychiatry, & Psychology, 23(3), 215–228. Sashidharan, S., & Francis, E. (1999). Racism in psychiatry necessitates reappraisal of general procedures and Eurocentric theories. BMJ, 319(7204), 254. Slater, L. (2011). Prozac diary. Random House. Smith, L. T. (2021). Decolonizing methodologies: Research and indigenous peoples. Zed Books Ltd. Sooben, P. N. (1990). The origins of the Race Relations Act. University of Warwick. Szasz, T. (1976). The myth of mental illness. In Biomedical ethics and the law (pp. 113–122). Springer. Szmukler, G., & Rose, N. (2013). Risk assessment in mental health care: Values and costs. Behavioral Sciences & the Law, 31(1), 125–140. Tyrer, P. (2018). Taming the beast within: Shredding the stereotypes of personality disorder. Hachette UK. Ussher, J., & Ussher, J. M. (2011). The madness of women: Myth and experience. Routledge. Ussher, J.  M. (1991). Women’s madness: Misogyny or mental illness? Harvester Wheatsheaf. Voronka, J., Wise Harris, D., Grant, J., Komaroff, J., Boyle, D., & Kennedy, A. (2014). Un/helpful help and its discontents: Peer researchers paying

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10 Conclusion

Theory I have argued elsewhere, picking up from Donna Haraway, that the days of general epistemologies are coming to a close (Haraway, 1988; Rose, 2017a, 2017b, 2018). Truth statements cannot be separated from values and perspectives are always partial. So the task is not one of a single epistemology, but epistemologies, plural. However, emphasising the local does not reduce to a series of descriptive arguments or discrete empirical works. Higher-level concepts are needed to see how different positions hold together in a configuration which will be neither homogenous nor without dissent. What I will propose tries to make good on the arguments made in the Preface—to turn mainstream thought and practice on its head. It is not an easy task, I am well aware. I propose to structure the argument by first summarising the hurdles we face in doing this, elaborating on epistemic injustice and other forms of silencing such as co-option, coercion in the form of involuntary detention and treatment and ‘technologies of legitimation’ where what looks to be giving power to survivors actually benefits the mainstream and even The original version of the chapter has been revised. Three text corrections have been to clarify statements in the section “Mental Health and Meaning in the West”. The chapter has now been corrected. A correction to this chapter can be found at https://doi.org/10.1007/ 978-3-031-07551-3_11 © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022, corrected publication 2023 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_10

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madness as contagion. In other words, I see power as multiple and some readers will detect a Foucauldian slant (Howarth et al., 2000; Miller & Rose, 2008; Turkel, 1990). But for Foucault power was also generative and this speaks to breaking the silence. Any new knowledge system will be formed from counter-narratives: against psy and at a tangent to it. And will entail new forms of social relations. Second, we have seen that partly by dint of decontextualisation the thoughts and actions of those deemed mad have usually been seen as just ‘meaningless ramble’. The famous psychiatrist and philosopher Karl Jaspers, in his 1913 book General Psychopathology, defined delusions simply as that which cannot be understood (Berrios, 1991). But there have been attempts to accord meanings to madness and I shall briefly summarise these. A pressing question is who is engaged in this activity—making madness meaningful. Because it has not been the mad themselves, as we shall see, and I shall argue that it must be. Third, if madness is meaningful, what are the conditions that give rise to these experiences? The mainstream these days usually answers in terms of genes and neural circuitry. And some say that stigma intensifies the effects of these dysfunctions, playing the role of a ‘second illness’ (Thornicroft, 2006). I have emphasised instead structural violence and interpersonal strife. That these are for the most part hidden is linked to the way in which mad people when viewed by experts in the clinic or hospital are classified in terms of symptoms ripped from their social settings which then do not appear in the picture of the ’illness’. This will take us on a brief journey into societies which do not individuate in the same way (Gone, 2016; Gone & Kirmayer, 2010). After this I am going to deal with a recent text on madness and a ‘model’ that some believe to be relevant to the social situation of those deemed mad. The recent text is an edited collection entitled The Routledge International Handbook of Mad Studies (Beresford & Russo, 2022). This collection was published when I was half way through the final revision of this book. There are similarities and there are differences with the position I set out in this book, and I will comment briefly on these. The references will necessarily be partial but I will aim to make the links with my own arguments. The ‘model’ I refer to is ‘the social model of disability’. In many ways, the CRPD makes use of this model. Some have called for a ‘social model

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of distress’ which now has more traction given the appearance in the CRPD of the concept of ‘persons with psychosocial disabilities’. So I want to discuss the extent to which the social model of disability can be useful to those of us positioned as mad. I will discuss it experientially and also practically—in terms of what would count as ‘accommodations’ for those with distress. In my view, and as said in Chap. 1, I will conclude that this question has not been adequately addressed. After this I will revisit the idea of higher-level concepts which might tie together different counter-narratives and also research to furnish a richer picture of the (contentious) terrain of madness. Consistent with the idea of situated knowledges, I expect local studies to continue and hopefully grow. But some general principles seem required to lift these to something like ‘epistemologies’; principles which join up different discrete elements. I put the word in scare quotes for the reasons given above. Finally, I will address the implications for research. This will take us back to the dominance of the academy and its multiple ways of reproducing itself, of enacting intellectual power. To return to Science and Technology Studies, I propose that we start ‘in the wild’ when researching the field(s). It is here we will find our ‘topics’, our ‘methods’ and our underlying concepts and values. Here the mainstream really will be turned on its head. I will also tentatively propose that activism is itself a form of knowledge-making—not a product of knowledge-making but knowledge-making in itself. So do not expect a full-fledged epistemology, plural or otherwise. These arguments function as conditions for this. I lay them on the table as they are. It will be for readers to judge whether they will be useful or not.

Conditions for Silencing Madness One way to begin understanding the silencing of madness is to start from Miranda Fricker’s argument about epistemic injustice (Fricker, 2007). She divides this into testimonial injustice—where what you say is not regarded as credible knowledge—and hermeneutic injustice, which refers to the absence of a public field of meanings and enactments through which a person can articulate their concerns. Fricker’s analysis is about

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women and it is a feminist one. There is a small literature on epistemic injustice and mental health, but it concentrates almost exclusively on the first, testimonial injustice, and within that on the process of diagnosis. Alex Tate, who is a philosopher, sees this as an error in a process that is otherwise satisfactory, that is the diagnostic interview (Tate, 2019). On the other hand, Kurs and Grinshpoon argue that those described as mentally ill have a particular vulnerability to testimonial injustice by virtue of being labelled (Kurs & Grinshpoon, 2018). In my view, Tate misunderstands the systematic nature of the concept and Kurs and Grinshpoon may be right but it is something of a tautology. Karen Newbigging argues that advocacy can make a difference to this injustice and I shall have more to say about the potential of advocacy later (Newbigging & Ridley, 2018). Only one article seems to address the question of hermeneutic injustice (Leblanc & Kinsella, 2016). It is worth pointing out that this small literature makes heavy use of the concept of stigma, almost equating it with testimonial injustice. It is the case that Fricker uses this term but the concept of epistemic injustice is much deeper than ‘stigma’ or ‘prejudice’ and is also more specific in that it is focused on who is and who is not credible as a knower. There are some obvious parallels with Foucault’s stress on the mad as those considered to lack reason, an idea that manifests today in ideas such as ‘lack of capacity’, ‘lack of insight’ and ‘cognitive deficits’ (Foucault, 2013). I began with Foucault, but as anticipated in the end he is one amongst many. I would argue that Fricker’s second aspect of injustice—‘hermeneutic injustice’—is more significant for those positioned as not making sense. What we have here is the absence of a field of meaning or public discourse through which madness can be articulated, analysed and within which the multiple and varied experiences of madness can simply be talked about. In many ways it is this that marks the person deemed mad off from the rest of society. It is this that makes their talk and actions seem meaningless, it is meaningless because there is no current way of explaining or talking about it aside from using the languages of the psy disciplines. Sometimes people say things like “I can’t explain it” or “there are no words” or they draw or photograph, sketchily. This absence of a social and communicative structure means you cannot even begin to re-think your experience and enactments in however small steps. It means that

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this aspect of your life is erased, co-opted, pathologised or all three. It means too that certain conversations are literally confusing because there is no language that aligns with living as mad and when experts speak about their patients in their own language, the ones who are the objects of this talk cannot recognise themselves in that. This is a structural matter, that is to say a matter of power, because discourses and meanings are hierarchised in Western society with a privilege given to academic discourse, the words and organisations of the experts. Yet this expert discourse is probably the most alien of all to people experiencing extreme states. Some can perhaps reconstruct a story for themselves despite this alien talk. But mostly, my argument is that for madness to have its voice, this space has to be cleared of labelling, categorisation, diagnosis and worse. What will fill it? I don’t have a recipe here, but any way forward will have connections to what I said about recontextualisation. Of course, drawing other threads into an individuated and pathologised space such as the expert discourse on madness is no easy matter. Expert language is at the core of the available resources of meaning, of the hermeneutic space that covers madness and beyond. Other matters that so often shape the experience of madness, for instance, those of finance and housing and children and hostility are siphoned off to the allocated social worker. Disciplines exist in more than the academy. And so, to create an alternative hermeneutic space we have to find the very social and symbolic bearings that have been removed. This will require changes in the language of values and in the balance between individual and social in discourse and practice. And, as I said in the Chap. 5, we may need to make heavy use of figures of speech and contradictions may need to be held open rather than erased in a rush to resolve them. All of this applies to knowledge in different spaces in which madness appears, not just the academy as we shall see. There are other forms of silencing such as the co-option that was discussed in Chap. 2 with respect to the Recovery Approach and, as I discussed more briefly, the peer workforce. This silencing takes the form of pushing aside survivor knowledge and claiming it for the mainstream, a rewriting of history (P. Farmer, 2004b). Coercion in the form of involuntary detention and treatment silences brutally, on the body. Yet analogous processes can take place where what looks to be a welcoming space, one

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which benefits survivors, actually works in favour of the mainstream. We saw this with respect to user involvement in research in England. Harrison and Mort, speaking of health services more generally, call it a ‘technology of legitimation’ (Harrison & Mort, 1998). In other words, it legitimates the mainstream in the guise of giving power to users. The normal and pathological can be separated at very quotidian levels. Anyone who has spent time in mental health facilitates will notice that there are coffee mugs for patients and different ones for staff and toilets are similarly separated. What does this mean? An example makes it clearer, so let me give another anecdote. One Christmas Eve a young man was admitted to the ward I was in and he was in a very bad way. It took the staff over four hours to subdue him, and during this time the rest of us were herded into a small sitting room. Well, nature takes its course. But not until more than three and a half hours went past, were patients given the key to the staff toilet (the patients toilets were on the other side of the young man). In fact, we were not ‘given’ the key. The staff unlocked the staff toilet door for the patients—one by one and supervised. What divisions, what meanings, inhered in that little scenario? What power did it speak and enact? Is it justifiable? To change it would not just be changing habits, it would be changing something more fundamental to do with social relations and structures. The social psychologist Denise Jodelet wrote about this at length, having conducted an ethnography of a small village in France where there was a tradition of villagers taking ‘guests’ from the local Mental Hospital into their homes to live (Jodelet, 1991). At first, Jodelet was impressed by the way the guests were treated as normal. But gradually, embodied in day-to-day practices, she concluded that the villagers thought that mental illness was contagious. So, dishes, cutlery and clothes were washed separately for the ‘guest’ from other household members, guests were confined to their room should other people be visiting. And a special toilet existed for guests’ use only. Jodelet concluded that in this village, mental illness was seen as a form of communicable disease. This may seem ridiculous to most of the readers of this book. Nobody mentioned it explicitly in Jodelet’s interviews, but she was observing as well as interviewing. However, she did not interview any guests. I once asked her why and the

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response was a look of surprise. They were not overlooked, just not deemed of value to the study. In other words, as is so often the case, those deemed mad are not heard. Their voices are absent. And this is a major point. We are back with silencing, back with dividing practices that separate the normal from the pathological; that give the authority to speak about madness to experts. And a primary task for us is to claim that authority for ourselves from structural violence to toilets. This strategy of reclaiming authority for the words of those who are oppressed goes back a long way (Hornstein, 2017). Silencing, then, power, then, comes in multiple forms. I give most space to epistemic injustice because it intensifies the others. But power is also generative, and I shall return to this later in this chapter.

Mental Health and Meaning in the West It is not as if there is total agreement that madness is meaningless, there have been numerous attempts to find alternative meanings and practices. These mostly come with an associated ‘therapy’ but there are other narratives too. I will start with the therapeutic.

War While psychoanalytic therapies began to develop in the early twentieth century, mostly available to the wealthy, after the end of the Second World War, particularly in the UK and the USA, psychoanalytic ways of thinking expanded and claimed to interpret what out of kilter thought processes really meant. At least, they offered some kind of acceptable representation of the meaning of the language of madness. Therapeutic Communities for ‘shell-shocked’ soldiers were established, notably by Thomas Main and Maxwell Jones in the UK. But historical research has shown that these therapeutic communities were largely for the officer classes; psychoanalysis—individual or group—was out of the question for the majority of those returning from the war (Barham, 2004).

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Nonetheless, even if much of this ‘treatment’ was individual, a discourse and practice was established in these therapeutic communities that, although unevenly, escaped these enclosed psychiatric spaces and their experts. The most important point about these developments relates to user-led research and knowledge. To be explicit for a moment, experts developed the therapeutic spaces—including the later ones arising from the work of the Tavistock Institute of Human Relations, such as Leicester conferences and Balint Groups (Miller & Rose, 2008). You might say ‘well, of course’. But from Maxwell Jones to Ronald Laing, it did not occur to these experts that the people themselves might have something, even a lot, to say about how their problems should be addressed (Jones, 1956; Laing, 2010). Of course, patients could bring forth words but these were mainly offerings for the professionals to interpret and only the therapists had the whole picture or thought they did. Indeed, in the 1960s and 1970s, while there were some therapeutic communities such as those established in the UK by the Richmond Fellowship, there were no ‘autonomous user groups’ in what became known as the ‘anti-psychiatry’ movement. Even Franco Basaglia’s famous work of de-institutionalisation in Italy did not entail working in tandem with such groups (Scheper-Hughes & Lovell, 1987). And Kingsley Hall, set up by R. D. Laing, was emphatically not run by the patients although some boundaries were elastic in the extreme (Chapman, 2020). Therapeutic Communities were supposedly run on lines of equity and democracy but therapists were always the ones with authority. Maybe outside expertise is important. I would defend expertise or rather I would not rule it out as helpful for some. It depends, though. In Therapeutic Communities, community members took care of all the practical tasks and committed themselves to the programme. They were residents. The therapists were not. That might seem obvious, even too obvious to say. Which is exactly the point. Because for people who have been on psychiatric wards for the last 30 or so years, it is something that strikes patients—the staff go home at night. They may even go down the pub. Which brings us back to coffee mugs and toilets, establishing an ‘us’ and ‘them’ in what seem trivial details. But they are not trivial because they divide the normal from the pathological at a quotidian level. So madness might have meaning but the pathological is never very far away.

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Trauma The idea that trauma can lead to severe distress—sometimes many years later—has prominence currently (Campodonico et  al., 2021; Rosen et al., 2018). We have met it already. There is a concern with all kinds of adversity but a particular focus on Child Sexual Abuse. This is certainly the case with the largest endeavour in the field to create an alternative ‘theory’ of mental distress—the Power, Threat, Meaning, Framework or PTM (L. Johnstone & Boyle, 2018; L. B. Johnstone et al., 2018). The full title is: The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. As the title suggests, PTM is presented as an alternative to the American Psychiatric Association’s Diagnostic and Statistical Manuals (DSMs). The basic argument is that people experience power of many varieties, this can be felt as a threat and the person ‘makes meaning’ from it, and they explicitly use the word ‘surviving’ at the start of every ‘pattern’ of distress. Sometimes these ‘meanings’ are troubling or troublesome for the person themselves or others. The text, which is 95,000 words long, is said to provide an ‘evidence base’ for the arguments. The authors contrast the DSM focus on what a person is to their own on what a person does. They identify seven ‘patterns’ or ‘regularities’ which are cast often in evolutionary terms: As discussed, we believe that there is sufficient evidence to suggest a broad, provisional set of response patterns, described as verbs not nouns: for example, “surviving social exclusion, shame, and coercive power,” “surviving defeat, entrapment, disconnection, and loss,” and “surviving rejection, entrapment, and invalidation.” (Johnstone & Boyle, 2018)

These patterns are said to come from universal needs although they will be ‘expressed’ according to local cultures. Many things could be said about this text. It has a social justice slant and the authors have done their utmost to spread their message globally. It makes strange use of ‘evidence’. Liberal reference is made to Seligman’s theory of ‘learned helplessness’ which he developed in 1972 largely on

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the basis of animal work and then extended it by some highly artificial experiments with American college students (Seligman, 1972). The age of a text has, of course, no bearing on its quality, but there are many problems with its unquestioned adoption for the understanding of mental distress. The authors of the PTM Framework write as if this is the only way people come to feel helpless and become helpless, but this is surely a questionable assumption. Indeed it is not only questionable but frankly false and insulting to assert that we are helpless. However, the main issue I have with the PTM framework is the universalism and, ironically, the resulting imposition of a ‘pattern’ on every distressed person. The use of evolutionary psychology is very contentious, but it is presented as fact. The kind of evolutionary psychology that the PTM draws upon has been extensively criticised especially by Buss on grounds of its mis-use of Darwin’s concept of ‘fitness’ which, for Darwin, was not a universal characteristic but always referred to competitive advantage within specific ecological niches (Duntley & Buss, 2008). Equally, the seven ‘patterns’, posited as universal, are not so different from diagnostic categories. More fundamentally, the authors of the PTM posit ‘meaning-making’ as a human universal, whereas I have been emphasising what happens when it becomes impossible to make meaning. There is a sense that the authors of the PTM framework have the words for everything. Three things about the PTM have upset service users the most. The first is that despite, or perhaps because of, the talk of ‘universals’, issues like structural racism are not meaningfully accounted for. But second, the emblematic ‘trauma’—the ‘power, threat’ part—is child sexual abuse. While this has become a common explanation of mental distress, survivors often contest such a narrative of their own situation and will tell of many other traumas that can be just as disorienting and damaging. Finally, despite the rhetoric of social justice, the authors of the PTM have been recalcitrant in the face of survivors who have pointed out that many ‘need’ a diagnosis to live today, for example, to gain access to treatment or to benefits, as explained in Chap. 1. There was some survivor involvement in the formation of the framework but they were not the report’s lead authors and the majority of the author group were white. So yet again, it could be argued that in the

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PTM framework, white professionals are setting the agenda. Finally, the authors call their approach ‘formulation’. I would argue that the original use of that term, by the American psychiatrist Adolf Meyer, though still problematic, is more flexible and not constrained to fit that formulation into a pregiven set of categories (Meyer, 1922). Meyer thought madness had meaning in the context of an individual’s personal history and current circumstances but did not seek to categorise and classify it in the way the PTM framework does.

Not All Meaning Is Therapeutic There is a completely different discourse about what madness means that seems mainly to be concentrated in the disciplines of geography and law. This is the argument that ‘psychiatric patients’ are denied citizenship because basic citizenship rights do not apply to those deemed mad. One of the earliest to articulate this view was Liz Sayce, an English academic and policy maker who wrote From Psychiatric Patient to Citizen in 1999 (Sayce, 1999) and updated it in 2015 (Sayce, 2015). She wrote it on a scholarship to Harvard and I think that is significant because ‘rights’—as legally enforceable—are at the heart of the American Constitution. However, rights in this sense, at least until recently, have not been a core political category in the UK. Larry Gostin, then Legal Advisor to MIND and himself from the USA, tried to introduce the idea of ‘rights’ into the UK Mental Health Act 1983, and although this Act was not entirely rights-based, the UK does have quasi-legal tribunals where arguments about detention under the Mental Health Act can be adjudicated. Sayce herself believes the UK to be well placed to combine a rights approach with a welfare one, however I do not think this is the case today, if it ever was the case. To fully engage with this would require me to take on the UN Convention for the Rights of People with Disabilities (CRPD) which raises distinct issues in different jurisdictions, and in particular for survivors in the Global South which are outside my scope in this book. However, I will presently discuss the applicability of the ‘social model of disability’ to mental distress.

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But the literature on citizenship does warrant some attention. The ‘citizen’ can be regarded as a ‘norm’ but it is quite different to the therapeutic narratives we have been considering so far. It differs in how it figures what having ‘citizenship’ would mean for those severely distressed and what it is about citizenship that is being denied. For Sayce the basic problems are discrimination and social exclusion, framed legally. She has detailed her view of the difference between this and the concept of ‘stigma’ (Sayce, 1998). This argument is definitely an advance but it is weakened because she talks about ‘patterns of discrimination’ rather than structures of inequality. Her solutions are legal and policy ones and she quotes approvingly both USA and UK anti-discrimination law. However, the discrepancy between legal change and culture change has been compellingly discussed by Lani Guinier and to me this is absolutely critical (Guinier, 2009). Those in the legal field sometimes appear to think that legal change will automatically lead to culture change which, as Guinier shows, emphatically it will not. This does not mean there is nothing to be said for a rights-based approach to this field. As Sayce says, we are talking about ‘life’ here (Sayce, 1999). Nonetheless, in much discussion of rights, there is a tendency for ‘rights’ to be seen as held by individuals. However collective rights appear in the CRPD, and I will now turn to the way that these have been addressed and what we can gain from this different way of considering citizenship. Quinn and colleagues (Quinn et al., 2020) begin their argument by discussing what they term the ‘creative tension’ between individual and collective conceptions of citizenship. They do infrequently use the term ‘marginalisation’ and the term ‘rights’ but these are not unpacked conceptually. They give the following example of what it is like not to be part of the ‘community’; not to be a full ‘citizen’: Outreach workers found that placing clients in housing involved, for many, isolation and loneliness in their apartments, ostracism by neighbours, lack of knowledge of how to manage apartment living, and consideration of “moving back” into homelessness. Although these outreach workers helped individuals access services and support, what they could not do was to help their clients become neighbours, community members, and citizens. (p. 6)

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The rest of the paper is an ethnography of a community building initiative led by the team which included a social worker and peer support specialist. It is quite different to the one observed by Aldred (2011). They wished to break with the model of a ‘lead’ managing a service and to let the group find its own centre collectively. The professionals ‘facilitated’ the process and, crucially, it was not a ‘mental health’ project but a ‘community building’ one. Mental health figured but in terms of daily life and having distress was not a criterion for membership. The group had some difficulty finding its feet, and the quotations speak of chaos and lack of cohesion, but by four years on they were part of a much broader anti-­ poverty initiative and successfully integrated in the local annual festival. This appears to me as a form of peer support plus plus, without a mental health focus. But to say this is perhaps unwittingly to drag the work back to a mental health perspective. The level of collectivism attained led the authors to write that individual decisions are based in collective ones, quite the reverse of the service model (the study site was Connecticut, USA). This does not efface individuality but grounds it. It concurs with my observation in Chap. 7 that it is too simple to assume ‘the individual comes first’ and collective experience arises from this. The word ‘solidarity’ appears in the title, but oddly not in the text and yet the sense one gets from the account in the paper is just that. It is not clear if the issues of chaos and confusion mentioned in some of the quotes were resolved or the group learned to live with it—this is an issue that is very important for mad knowledge and activism. Finally in this discussion of rights and citizenship in the UK, we can find similar terminology in the Social Care Institute for Excellence (SCIE) (Warwick, 2011). They describe a culture of ‘excellence’ as grounded in human rights and in the committed application of this in all that social care workers enact. They also describe themselves as ‘evidence-based’ which in my view is slightly problematic as the evidence base for social care does not focus on principles of rights (Fisher, 2016). However, their concept of ‘knowledge’ is broad and includes practitioner and, crucially, user knowledge. Indeed, in a report for SCIE, Sarah Carr and Esther Coren made a synthesis of user-driven systematic reviews including the one in Chap. 8, the review of survivors’ perspectives on ECT (Carr & Coren, 2007). So here, survivors do have a voice, are breaking the silence

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with their own meanings and knowledge. This is rare, as we have seen, but it is growing. So there is no absence of meaning-making in mental health and not all of it is focused on ‘health’ or even health and social care. Some is focused on ‘life’, a complex concept if ever there was one, but this does resonate with the arguments I have been making throughout this book. The idea that survivors are not suffering from a ‘health condition’ is not prominent, but it is not absent either, particularly in the latter set of discourses on rights that I have been concerned with here. But if madness can be seen as meaningful, what are these psychic troubles? What are the conditions experienced according to people themselves?

If Madness Is Meaningful What Are Its Conditions? According to most mainstream psychiatry and allied schools of thought, madness is meaningless because of it is a manifestation of chemical imbalances, synapses gone awry, deranged neural circuitry with all of it underpinned by genes. Never mind that Tom Insel, Director of NIMH in the USA for 20 years, said that $20b had been spent on research to substantiate the neural basis of mental distress, and some ‘really cool’ papers had been produced but not a single patient had been helped by this approach (Rogers, 2017). Yet despite so many years of failure, the research funding, and the papers, continue, as does the training of professionals grounded in this approach to mental distress. It is quite amazing really. But there is another body of literature that is important in a ‘framing’ sense, framing for Mad Knowledge. This is the idea of ‘social suffering and structural violence’. Paul Farmer, whose empirical work has largely focussed on epidemics in Haiti, defines structural violence like this: The arrangements are structural because they are embedded in the political and economic organization of our social world; they are violent because they cause injury to people (typically, not those responsible for perpetuating such inequalities). (P. Farmer, 2004a) epub

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He argues that molecular biology has made significant advances but in no way can account for the embodiment of these as patterned according to social structures which cause suffering and injury. For this, a radical combination of epidemiology, participatory research and ideas from the humanities are vital. Interestingly, he singles out psychology for criticism on the grounds that it focusses on the individual and ‘desocialises’ health: The relations of anthropology and psychology are not easy to deal with. Psychologists began by taking their own culture for granted, as if it were uniform and universal, and then studying psychic behavior within it. (P. E. Farmer et al., 2019)

‘Desocialising’ is close to what I have been calling ‘decontextualising’, so Farmer and his colleagues have produced a body of work that aligns with that analysis, however there are some significant differences between their approach and those I have been advocating. Farmer and those who think like him have respect for clinical medicine—it is just that they believe a full understanding of health and health inequity requires going beyond the clinical encounter. Or clinical research. One participant in my interview study talked about this at length. Unfortunately the discussion of mental health in this literature is sparse. Farmer has written on the history of the asylum in Haiti in a book entitled The Birth of the Klinifka (P. Farmer, 1992). There is a literature on intimate partner violence and depression, both for men and women (Coker et al., 2002). Otherwise, the few references to mental health are for very specific groups, which is consistent with my focus on situatedness in this book. But this is quite a glaring gap especially since psychiatry is one of the areas where the ‘molecular’ evidence base in actual human patients is small. However, it may be that the respect for doctors makes the field circumvent psychiatry. In any event, in my view the overall conceptual approach to structural violence has applicability but needs transformation. Other writers, psychiatrists, have made similar arguments, one being Arthur Kleinman, who has been an advocate of a radical transcultural psychiatry for many years (A.  Kleinman et  al., 1997; A.  Kleinman & Good, 1985; A. M. Kleinman, 1977). And in Chap. 2, I discussed the

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work of Joseph Gone and Laurence Kirmayer who argue for a shift from the ‘egocentric’ nature of current psychology and anthropology towards an appreciation of the social world (Gone, 2007; Gone & Kirmayer, 2010). Indeed, Gone has written a ‘provocation’ to community psychology arguing for an upturn in epistemology that de-centres the individual (Gone, 2016). Both Kirmayer and Gone have written on ‘intergenerational trauma’ as I discussed in Chap. 2 which is a completely different analytic framework to that proposed by Lucy Johnstone and colleagues and calls for different supports. The other point to make is about ‘cultural competency’, mentioned in Chap. 9 is that. Jonathan Metzl has argued for a shift in medical education in a multiracial society such as the USA, from its current emphasis on ‘cultural competency’—basically that physicians should understand the ways in which those from different cultural groups express their symptoms of disease—to ‘structural competency’ (Metzl & Hansen, 2014). He has also and unusually applied this to psychiatry (Metzl & Hansen, 2018). Similarly, this approach has been advocated for nurses (Choiniere et al., 2014). There are many small studies which show that changing social structures can reduce health inequity, and many of these are focused on the idea of ‘peace’ at a community level (Vorobej, 2008). The details of Metzl’s recommendations are impressive—they would produce a very different kind of ‘medicine man’. Nonetheless, his focus in on professional education and despite the importance of this emphasis on the structures that underpin ill health and create the gross inequities in illness and death, there is no place for the patient or psychiatric survivor to actively contribute to the development of these ideas. Even sympathetic ‘experts’ often eschew us. One reason why ‘structural violence’ is radically missing from mainstream psy is that the very structures and practice render it invisible, either generally or in specific instances, in the ‘case history’ that the doctor produces. Instead everything important in the development of the condition is its manifestation in the individual and everything in that manifestation is pathological. This is what calls for a radical shift of lens. And a radical politics where those positioned as mad would have a unique contribution to make.

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I will come back to these ideas later in this chapter when I discuss the social model of disability. But first I want to turn to the recent edited collection, mentioned at the start of this chapter, many of whose arguments intersect with mine in interesting ways.

 he Routledge International Handbook T of Mad Studies This text appeared as I was rewriting Chap. 5 and it certainly gave me pause (Beresford & Russo, 2022). I was invited to contribute, but my own views on Mad Studies had already been published elsewhere. I would like to think that the arguments in this present book and those in the Handbook are complementary but I am not sure the authors of the Handbook would agree. In any event, at this point I cannot give a comprehensive review that does it justice and so will have to be selective. There are certainly common uses of concepts between the Handbook and the present text, particularly in relation to epistemic injustice and an occasional reference to individualisation. There are differences too. The Handbook takes it for granted that the mad are a marginalised group and I have queried this. I am actually quoted as saying that Mad Studies is in danger of being confined to an elite group in the academy, and this may be true of this book too! Nonetheless, the Handbook contains many different types of contribution, certainly not all academic and a number from contributors from outside the Global North. Mad Studies originated at Ryerson University in Canada and I remember a conference in 1987 where two ‘founders’ of Mad Studies, David Reville and Kathryn Church, presented a paper on ‘user involvement’ (Church & Reville, 1988). But the embryonic discipline finally hit the press in the early 2010s with the publication of three key texts (Burstow et al., 2014; LeFrancois et al., 2013; Menzies et al., 2013). That the same people figure as editors hides the breadth of this endeavour. Mad Studies arrived in England and Germany pretty soon after (Beresford & Russo, 2016; McWade et al., 2015; Russo & Sweeney, 2016).

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The central tenet of the approach taken by Mad Studies is that we should be focussing on the positive things that survivors are doing and not content ourselves with critique. I agree but I am not sure they have managed it. There is still an emphasis on critiquing psychiatry, rather different to mine (Burstow, 2015; Diana Rose, 2019). But the book certainly contains innovative work including chapters on activism and peer support, and many personal stories of the ‘epiphany’ of finding like-minded people, a movement, which drives home the importance of collectives including in the Global South. But I am going to concentrate on one chapter as its theme has been important to this book. It is by Danny Taggart and entitled “Are you experienced?” with the sub-title “The use of experiential knowledge in mental health and its contribution to Mad Studies”. Taggart identifies as a clinical psychologist, an academic and a survivor of institutional abuse and he has a lot to say about identity politics which he ties to experience. Unfortunately for me, this is one of the most ‘academic’ chapters in the whole book. I found it a struggle. But it speaks to a concept that has figured strongly in this text. Taggart argues that ‘experiential knowledge’ normally finds its place instrumentally—, in Chap 17 of the Handbook, to achieve better services, for example. That certainly concurs with what I said in Chap. 7. But he believes it can do more than this: The value of experiential knowledge forms seems to reach beyond the merely instrumental and to have space, in theory at least, for the telling and hearing of experience to have value in and of itself. (Taggart, 2022, p. 157)

What is this value? First, he stresses that empirical research and experiential knowledge are different epistemically (does he mean empiricist research?) and believes that once this is acknowledged many tensions will disappear. To my mind, this has been recognised for a long time and the tensions are still there. Second, though, he picks up on Fricker’s emphasis on ethics and brings in the role of the listener. The listener has a responsibility to be open to the speaker. The trouble with this is that it is redolent of Habermas’ ideal speech situation and this is because Taggart concentrates wholly on testimonial injustice—a dialogue. I argued in Chap. 5 that dialogues can align or misalign but this is because of the overarching discourses people are deploying. In other words, a ‘dialogue’

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is socially structured and these structures affect what counts as ethical responsibility too. So there is plenty of room for misunderstanding each other’s ‘experiences’ despite good intentions and a commitment to respect each other. This is doubly odd because Taggart speaks a great deal of the pain of representing one’s experiences, especially trauma, and how disagreements can lead to splits which ‘have bedevilled survivor movements’. More positively he argues that metaphors of ‘wandering’, ‘searching’ and ‘discovering’ are more apt to the form of knowledge that is experiential. This brings in the dimension of time but not in a linear way. He counterposes empirical science to the ‘quality’ of experience, best rendered through poetry and art despite that we are not all James Joyce. He speaks of the beauty of everyday survival. Is it? Everyday survival, I mean. Certainly, though, renditions of experience tell us something different to science—different in nature. Something? What exactly? Taggart is trying, from centuries of philosophy and literature, to reach for an account of ‘experiential knowledge’ that will function as an organising category for Mad Studies. Whilst there are elements to savour, his account fails for me primarily because he says nothing about hermeneutic injustice or collective knowledge. Jasna Russo emphasises collectivity in both her contributions. Taggart says little about reflecting on experience but that, I would argue, is a major condition for ‘experiential knowledge’ to be a founding category at all. It is what happened in the original peer groups. And people did not come there with pre-formed experience that was then somehow synthesised to a collective level. Individual and collective: the first does not come before the second. They are intimately intertwined from the start. Taggart gives space to the work of Joan Scott but ultimately dismisses her as ‘post-structuralist’. I made my own critiques of Scott in Chap. 7 but the strengths and weaknesses of her account cannot be summarised in one adjective, whose meaning is unclear and is now largely used only as a derogatory term by those who fail to engage with the arguments themselves. Taggart’s argument is sophisticated but does not seem to me to give an adequate account of ‘experiential knowledge’ as an organising principle or category. This is because of what he omits. That experience is collective or, rather, pluralising, that experiences are formed through and by collectives. That experience is not homogenous nor ever ‘raw’. That experience

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is reflected upon again and again and changes with time, for better or worse. That experiences for Mad Knowledge are infused with social justice (or without it). That experiences are specific to time and place and reflect the meanings, indeed are in part the meanings, produced by the structural violence I discussed in the last section. And that the experiences of the mad are at once policed (including by us) and dismissed. To enter experiential knowledge into Mad Knowledge has to take all of this into account and more. Only then will we create, discover and generate our own hermeneutic space produced by us and for us. We have seen that counter-narratives are beginning and for all that the mainstream will try to change them and claim them for its own, the threshold has, I believe, been crossed. Which is not to say it has been crossed for all, by any means, or that there are not struggles ahead. The Handbook is a rich source and in this discussion I have had to be selective. There are commonalities with my own arguments but also sufficient differences to at least start a potentially productive debate.

The Social Model of Disability I touched on the social model of disability in Chap. 3 as an example of thinking and research outside the ‘officialdom’ of user involvement in research in England. I commented that one of the founders, Mike Oliver, had become disenchanted with the lack of progress (M. Oliver, 2013). But there are calls to utilise this model to produce a ‘social model of madness and distress’. The appearance of the phrase ‘persons with psychosocial disabilities’ in the CRPD intensifies this. And it at least implies that there is an experiential similarity between somatic troubles and psychic ones at the level of both ‘impairment’ and ‘disability’. It is this I would like to address as it will probably have been noticed that I have not ‘defined’ madness. For obvious reasons, I will not use diagnostic terminology although I have used other terms, mostly situated politically. So this section is as close as we are going to get to a description of madness as an experience. It is patchy, it is a meander, because I have already argued that such a discourse does not exist yet although fragments do. Perhaps the Handbook discussed in the last section is another beginning.

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I also need to enter a personal note. I have physical disabilities myself although I didn’t call them that until about five years ago. And in terms of ‘experience’, it’s not as if I am unfamiliar with impairments. Several members of my family are deaf and I grew up around deaf people. I was a fluent sign language user for a long time. The town I lived in had a school for ‘the deaf ’ and its pupils came from all over the Highlands and Islands of Scotland. Half my friends were deaf. But even there we have a question. Because politicised Deaf people do not see themselves as disabled, they consider themselves to be a linguistic minority and Deaf with a capital D (Lane, 2005). My mother certainly saw her own father and her son as ‘handicapped’ by their deafness. I also worked for five years in a local disability NGO as an administrator and disabled people were in and out of the office all the time. In other words, this question of ‘disability’ both is and isn’t abstract for me. But I will try to foreground the analytic side. So, there are those who argue strongly for ‘madness’ as a disability, exploring the links in particular between the two activist movements (Beresford, 2000). I shall come back to activism. But it is necessary at the outset to say, at the level of experience, the claim that both physical and sensory disabilities and madness are socially constructed, with which I agree, does not mean the experience is the same. The term ‘disability’ emerged after a long and dispiriting series of terms that have been used to those who are physically and mentally different, and to legitimate a multitude of forms of harsh treatment, including death and internment. Then in the 1970s disability became articulated through the ‘social model’ (Shakespeare, 2013). It was born of a dispute with Peter Townsend, the famous sociologist that he was and the Union of the Physically Impaired Against Segregation (UPIAS), Vic Finkelstein being a main protagonist (Disability Alliance and UPIAS, 1975). This initial dispute at the London School of Economics with Townsend was actually about independent living. Townsend didn’t think disabled people could manage. Equally those of us in asylums. But the dispute and later discussion gave rise to the distinction between an ‘impairment’ (physical or sensory conditions) and ‘disability’, this latter being brought about by material and symbolic social barriers. So disability, in the way the term was subsequently used, is inherently social.

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Psychosocial Disability Recently, and connected with the CRPD, there has arisen a language of ‘psychosocial disability’. In Australia, they have a welfare benefits system called the National Disability Income Scheme (NDIS) and it is not unlike the British system in respect of disabled people. In other words, it is unjust, it is cruel. People with mental distress have to prove they have, in the words of NDIS, a ‘psychosocial disability’, by showing how their illness negatively impacts their daily lives—which is calculated on a points system. So here ‘psychosocial disability’ is just a new word for ‘function’, part and parcel of the psychiatric narrative. But by using the word ‘disability’ at the same moment as the CRPD is ratified, it carries the pretence of rights. Power again, this time in elision. This is not the meaning of ‘psychosocial disability’ when it really is set in a discourse of rights: as with the social model of disability or the UN CRPD. This way of thinking hangs, as we have seen, on the distinction between the ‘impairment’ and the ‘disability’. And so the question arises (multiple times): what is the impairment in the case of psychosocial disability? I know I am not the first to pose it. The World Network of Users and Survivors of Psychiatry (WNUSP) simply says there is no impairment when it comes to those subject to psychiatry, all is oppression and subjugation. No room for suffering then, social suffering. When the discourse of rights is set against psychiatry in this way, the impairment cannot be a diagnosis—you can’t reject a discourse and then retain one of its central categories in your analysis. Of course, you might need a diagnosis for practical reasons as described in Chap. 1, but that is not the point at stake here. In terms of ‘impairments’, some academics talk of ‘cognitive deficits’ but apart from the Foucauldian ring—that is to say the link with a deficit of reason—and the historical link with the idea of the ‘feeble-minded’, the experience of madness is not just cognitive, it is so much more than that. Or the ‘impairment’ can be re-valued as with Mad Pride (Curtis et al., 2011). Or explained with a century of social psychiatry and now the rebirth of ‘formulation’(L. Johnstone & Boyle, 2018). But this is in a different register to a diagnosis of paralysis arising from C1/C2 spinal

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fracture or visual impairment. Because it means that not just the disability, but also the psychological ‘impairment’ itself is socially shaped. BUT… then a fall or a shot is a social event too. The Royal National Institute for the Blind is so rich because soldiers were blinded in the world wars and returned home as heroes. Peter Beresford, whose contribution is mentioned above, has dealt with the impairment/disability couple in an interview study with mental health service users (Beresford et  al., 2010). One topic the group discussed was the social model of disability, the meaning of ‘impairment and disability’ and its applicability to madness and distress. The quotations given are quite confusing, often ‘conflating’ impairment and disability and showing some negative perceptions of disabled people. Some mental health service users said they had no impairment and others that theirs wasn’t ‘permanent’. But surely the severity of symptoms experienced by those diagnosed with Multiple Sclerosis fluctuates. The authors comment that perhaps not all participants understood the social model of disability. An alternative interpretation is there are some real problems with the applicability of the model. But in any event, that model has evolved and changed. In the study, and in other papers, Beresford argues for a ‘social model of distress’. I agree with this reframing. But we need an articulated model of the ‘social’, based on social justice principles, and references to negative attitudes, domestic violence and racism should be developed into what it is that is relevant for us: groups within the survivor community including those in institutions or ‘living in the community’. Because, as the authors rightly say, the individualisation to which we are subject is fundamental. We are individualised, stripped of our social settings, at the same moment as we are pathologised. But to reverse this requires a developed and transformational social analysis, such as I outlined above. And, surprisingly, this is not developed in this work.

Reasonable Accommodations One attraction of the social model of disability is the spotlight on change—reasonable accommodations, as they are termed in UK legislation, are part of this. They include changes to the built environment,

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ramps, bubbles at road crossings, adaptations in communication, increasingly highly technical. They are not perfect but compare them with what we have for people with distress? Changes in attitudes. And academics are thrilled when their research shows that with this or that ‘intervention’ negative attitudes decrease at a significance level of p > 0.05 (Evans-Lacko et al., 2013). The nearest I ever got to reasonable adjustments at my own workplace was being ‘allowed’ to adjust my working hours to avoid the rush hour. This is something that deserves sustained attention but this is difficult, partly because of the very nature of the phenomenon. I gave the example in Chap. 1 of what kind of accommodations to working hours might be necessary for someone with severe distress to work, assuming this call to work is valid at all? But these proposed accommodations are definitely not ‘normal’, a concept that has figured several times in this book.

What Is Madness? I cannot answer this question but I can discuss it. The authors of the Diagnostic and Statistical Manuals (DSMs) of the American Psychiatric Association have a much harder time than their physical counterparts as there are no ‘biomarkers’ for their syndromes. And so many have asked if they really ‘exist’? WNUSP takes the view that psychic impairments don’t exist but I disagree. Have they spent time in the back and acute wards of today’s psychiatric hospitals? Services may be iatrogenic but what about ‘first break’ as pointed out by Anne Plumb (Spandler et al., 2015). That is, the first time someone breaks down without having any prior contact with services. Of course ‘time’ is an important dimension. We do have the term ‘chronic’ still, but what brings this ‘chronicity’ about? Services may be part of it if much is seen as iatrogenic as I suggest. In any event, those who have sustained contact with services seem to me to have a different experience than that associated with today’s narrative that holds “we all have mental ‘elf ’”. That narrative may look inclusive but really stands in for a language of the emotions, we talk about ‘mental health’ instead of emotions. But what is the emotional experience of madness? It can be

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awful. It can be ecstatic. It is the connotation of extreme, I think which is the important marker. Think about how language about madness functions as metaphor—to mark something as excessive: madly in love; crazy for money, the schizophrenic government. Ultimately, what do I mean by somatic and psychic troubles being experientially different? Excessiveness plays its part, but is almost too general—there are many forms of excess that are not equivalent to the experience of madness. But we cannot really talk about the phenomenological dimension of madness on its own and I am certainly not advocating it as the best approach. We can look at the ideas that circulate about distress as a kind of equivalent to somatic troubles. As argued already, a lot of survivors find that the narratives of psychiatry and psychology that speak of distress do not in any way capture life with, let’s say, psychosis. Sometimes people who attend Hearing Voices Groups say this experience of being with others who hear voices is the only place they feel validated and not judged. The talk of patients in a hospital ward or a Community Mental Health Team deserves attention but the research that has been done on this is usually rather normative and dominated by concerns about the extent of ‘mental health literacy’—there is a ‘literate’ way of understanding mental health and it is to be promoted (Kutcher et  al., 2016). But I know what I do about survivors thoughts about their predicaments as much from talking to fellow-patients than from reading books—and usually the most insightful books are ones written a long time ago (Estroff, 1985). And, like others who share my experience, I know not just through talking but learning important things such as that your legs are ‘restless’ because of the ‘side effects’ of haloperidol (a psychoactive drug)—learned from fellow survivors, not staff. And the little acts of resistance such as how not to eat whilst looking as if you are, should this be your dilemma. We know what is going on is not right but often the reaction is just to ‘play by the rules’, seem nearly normal and get out (Katsakou et al., 2012). The drive to escape services has its reasons, for the longer you are there the more you risk becoming ‘chronic’. This is largely defined psychiatrically as ‘negative symptoms’—apathy, blunted affect. But such feelings can be a reasonable reaction to a lifetime of rejection, isolation and worse. And what is often unrecognised is that part of being mad is sheer boredom, whether stuck at home or in an institution.

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A diary I have from an in-patient stay has hardly any reference to psychiatry as such—in fact one rarely sees a psychiatrist on the ward itself. It is about the minutiae of people’s lives on that ward, their experiences there and their memories. And that itself is a kind of collective knowledge, a knowledge of how to survive. Memory is central. Phenomenology is supposed to be about individual consciousness, experience from a ‘first-person’ point of view. But our ‘experience’ is constructed from many actors and objects. We do not have direct access to others’ minds, so ‘talk’ is all important. For those engaged with services you have to “tell your story”—to a doctor, sometimes multiple times to different ones (D. Rose et al., 2009). The interlocuter is important—however upset and distressed the person is, what the doctor gets is crafted, selected, emphasising some things and minimising others. What is important is the difference between the site of talk with professionals, what is talked about and how and what happens when the professionals are absent. It is fragmented, emotional, often focused on the deeply troubling, but with a lot of dark humour too. What is absent in one space is present in another. Having a child adopted is represented as a world peopled with social workers and laws when the addressee is a clinician; amongst others with the same experience it is grief, fury and profound regret. Or there is a photograph of a child: no words. The professional may consider something they see as having to do with health, but survivors may not inhabit that realm. This set of experiences, for those engaged heavily with services in the West, are all part of the phenomenology or experience of distress. Woven through them may be voices heard, improbable beliefs and legitimate or illegitimate paranoia. But to extract these ‘symptoms’ is to do an injustice to the experiences which may stretch reality but are deeply meaningful. Laing said so but he was a doctor: he was the expert who interpreted what the experiences meant, it was not up to the person (Laing, 2010). It never is. These are some aspects of the distress of madness that I can identify as different from the experience of medical conditions/physical impairments but I admit it is not very much. Why? I come back to Fricker. It is a contentious idea, we (or it might just be me) don’t have a public discourse, a field of meaning in which to articulate our experiences, similar ones felt by others and all that surrounds and flows from this. It is

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complexified by intersectionality and also by the power of different settings and relations. The talk-amongst-ourselves, however, is still constrained by psy even as we criticise its ways of thinking and acting on our bodies. This hegemony touches our talk profoundly so that struggling to find a place free of it, just free enough, is very hard. It is the underground of psychiatry; the underground of exclusion. It may seem like a cop out but I seek “the words to say it”: not the words to criticise psychiatry and society but the words to describe what is in excess of that, what exists on the other side. To say, what is the difference between breast cancer and mood swings? We have a medical discourse for both but, blurred as it is for the physical, it just does not work for the psychic. The ‘experience’ of your mind coming apart is not like your body coming apart, madness is not like a broken hip. Maybe that is it. There is little interest in the phenomenology of distress, what it is like to be mad, from the standpoint of the mad. Hence the points I have made about marginalisation. There is some literature, novels, poetry—only a language that doesn’t belong to the realm of the real. There is a gap, one that people themselves are not allowed to fill because the experts do it for them. They are the knowledge-makers; everything about me without me. The counter-narratives and counter-­ actions come in fragments as we have seen. And come they do but not in a way I can yet join up except to the extent that I have tried here.

Activism and Last Words Not very satisfactory but one thing needs to be said. There is a whole other element that should not be confused with my stress on the specificity of the experience of madness. Part of the reason for bringing physical and social disability together is different to this meandering above. It has to do with activism and alliances. I don’t see a problem there. Both have been medicalised and both have been Othered. The ‘treatment’ received is often iatrogenic—it causes additional problems, physical and mental, for the people so positioned. These problems are often worse than the impairment itself (of course, treatment can save lives too). User-led Organisations are at risk for both groups of people and the benefits

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system, based on medical criteria, wreaks havoc equally or is even more stacked against those with a psychiatric diagnosis (which you are obliged to have). In this I agree completely with Peter Beresford. Alliances seem called for, no doubt about it. It just does not mean they are advocating about the same thing.

Joining up Conditions I propose the above as some of the conditions for higher-level concepts that might function as Mad Epistemologies—transformative epistemologies, ethical epistemologies. I propose, first, that we stop decontextualising the mad in all spaces from the clinical encounter to policies to research and to knowledge generally. We put in its place an elaborated theory of the social conditions that attend and shape the different ways that people can ‘go mad’. We pay attention to intersectionality and to the divisions between us in terms of forms of life and service responses. Indeed, the power of these responses so heavily concentrated in services sustains subjugation and argues that we should take ‘mental health’ out of the realm of ‘health’ altogether. Alternative conceptualisations such as citizen or community member are a start but only that because they bring their own problems when it comes to dividing the ‘normal’ from the ‘pathological’. The same applies to the idea of distressed people as bearers of rights. Although I have critiqued the idea of ‘experience’ at length, it has a place as an epistemic counterpoint to what we get from ‘science’. But only if it is seen as not raw but continuously reflected upon, collectively reflected upon and subject to changes both small and huge. And that we draw back from the linearity of the assumption that first comes individual experience and from that the collective arises. They are intimately interlinked. Without these there can be no transformation. Wendy Brown cautions against the stasis of constantly repeating the ‘wound’, the damage that brought you to your fate (Brown, 1995). Experiences stick but they are not a place to get stuck and we must not be afraid of dissent. Most of all, these changes must be led by mad people themselves, those who know that place, that position, from the elites in the academy and

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activist groups to those who populate the back wards, forensic units and long-stay hostels. All have knowledge. It is not the same. I have spent many words critiquing the various mainstreams with which such endeavours must contend. I have tried to demonstrate the multiple ways in which power operates to keep us in our place, even to engage in the theft of our knowledge. It can be blatant, it can be subtle but it cannot be ignored. We are not supposed to know, not supposed to be capable of knowing. And yet we are supposed to thrive as individuals—at once irresponsible and responsible for our fates. There is a massive clearing job to be done, a dismantling of the apparatus of psy and the tentacles it has spread throughout society. But I have always argued against totalising theory, surprising though that may seem. There is no omnipotent totality, there are cracks, there are fractures, there are missing bricks and they should be addressed strategically if change is to come. It will not happen in my lifetime but I do believe it will happen.

Implications for Research I have said that science occupies different epistemic territory to the knowledge held by mad people. This does not mean I eschew empirical research. But it needs to be of a different kind. Coming back to Science and Technology Studies, I would argue that empirical work should start ‘in the wild’ (Callon & Rabeharisoa, 2003). We should forge our topics of research from the concerns of communities and that means that we, academics but mad, need to speak the language of the wild. The dissonance that I have described between academic language and understandings and that of citizens—ordinary and extraordinary—will take a massive effort to overcome. The very way the academy reproduces itself stands in the way of this so, to repeat, researchers have to change and academic priorities need to be re-set. Funding has to change (at which point the reader is probably wondering about my contact with reality). But Tom Insel was right in apologising for the way that funds flowed to a certain flawed way of thinking, and I can see some steps in the right direction even if they need radical development.

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There are research ‘methods’ that can be built on, but methods do not stand alone and they need underlying conceptual principles if they are not to be derailed. I am thinking of some forms of participatory research, ethnographies and ways of collecting ‘experiences’ that are not questionnaires or experiments but make use of new technologies such as video diaries and collage-making. I think again of Storying Sheffield. Experiences and their interpretation could be coproduced but it is the academics that need to cede power. The idea, expressed by Oliver and colleagues, that such will damage academic reputations says more about what counts as a ‘reputation’ than academics usually wish to think about (K.  Oliver et al., 2019). A question is left open. Who is responsible? Democratisation of knowledge can easily turn into exploitation of communities especially when it comes to the ethics of researching a movement you yourself are part of (Gillan & Pickerill, 2012). I do think the system of Principal Investigators in research that involves service users is part of the conservatism of academic knowledge but some kind of ‘centre’ is needed. We need to think about what a contract for survivor-led research would look like if it was both democratic and responsible. Not just a contract of employment but a contract between survivor researchers and the communities they seek to understand. In their own terms. The way academia reproduces itself needs to change so that it can hold itself open to the different knowledges and practices and persons that have featured in this book.

Activism as Knowledge—A Provocation I close the book with a tentative idea, which seems appropriate. This book has been about knowledge and I have said that this idea needs to be broadened. We think of activism as based on knowledge; but what would it mean to say that activism is a form of knowledge as such? And that it has some things in common with what I said in the last section. How can activism be knowledge, some will ask? All methodologists are familiar with Randomised Controlled Trials and also with the efficacy/ effectiveness debate. We know that what ‘works’ in the lab does not work

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in the wild although we are loathe to give it up. The whole of evidence-­ based medicine, in the field of psychiatry especially, knows that we know this but there is a massive ‘forgetting’, as much work in Science and Technology Studies shows (Callon, 2009; Callon & Rabeharisoa, 2003). We could argue that activism is the converse of the RCT. We start in the wild and try out (trial) ways of changing things that are not controlled but seem feasible. The goal is change and provisional ideas are the knowledge that is trialled—experiments, if you will, as in experimental drawing as well as design—to see if it brings about desired changes or even has effects that were not expected but are useful after all. The actions that bring about change that is wanted are adopted and others quietly disappear, for a range of reasons, not all good. The ‘effective’ enactment of a protest, a play, education, a photograph will be specific to time and place and in this way a legacy will develop that has some notion of its limits as well as its power. Limits because what works at one time and in one place will be ineffective in another and this is part of the development of knowledge. It is a kind of pragmatism from the margins and it needs principles and values of justice, ethics and avoidance of harm. This does not seem much like what we think of as ‘knowledge’, especially ‘scientific’ knowledge. But there is an argument and we know what counts as evidence. Activism is knowledge enacted so that new things surface and become evident. It is collective and it is, I would argue, crucial for change in the field of madness. It is ‘from below’ and developed from experience, plural and contested experience at that, and blended with reflection. We learn from our mistakes as several participants said, although we also need to be aware that the idea of a ‘mistake’ needs unpacking.

Conclusion There is no conclusion. Mad Knowledge can do without closure. There are just some ideas in this book that may be useful to changing the lives of those positioned as mad—an opening amongst many.

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Correction to: Conclusion

Correction to: Chapter 10 in: D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_10 Three text corrections have been to clarify statements in the section Mental Health and Meaning in the West. The chapter has now been ­corrected.

The updated version of this chapter can be found at https://doi.org/10.1007/978-­3-­031-­07551-­3_10 © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3_11

C1

Index1

Academics can’t be ‘lay,’ 136 Academy constrains user-led research, 209, 221 Academy reproduces itself, 130 Activism, 40, 51–56 Activism as knowledge, 310–311 Advocacy, 32 Allies, 143–145, 147 Ambiguity benefits the mainstream, 35, 48 Ambiguity of involvement, 77 Austerity, 16–24 Authenticity, 191, 199

The clinical encounter, 39 Collectives, 10, 20 Community engagement, 129, 140 Community validation, 237 Conditions for silencing madness, 283–287 Conditions for the meaning of madness, 294–297 Constraint of method, 102 Context, 34, 35, 37, 38, 44, 47, 50, 54, 56 Coproduction, 125–149 Costs of Coproduction, 142–143 Critical theory, 12, 12n1

C

D

A

Campaigning, 32, 33

Definitions, 125, 127, 141

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2022 D. S. Rose, Mad Knowledges and User-Led Research, The Politics of Mental Health and Illness, https://doi.org/10.1007/978-3-031-07551-3

319

320 Index

Diversity, 190–191, 193 Double identities, 210, 211, 213, 214, 227

H

Hermeneutic gaps, 285, 300 Hierarchies in the mainstream, 40, 42, 53 History, 5, 18, 23

E

Electroconvulsive Therapy (ECT), 207, 213–224, 227 England as ‘model,’ 86 Epistemic injustice, 7 Ethics, 209, 235–237 Evidence-based Medicine (EbM), 92, 93, 97–98, 102 Experience and research, 178, 187–188, 190, 191, 196, 200 Experience as everyday word, 179 Experience as foundational, 177–201 Experience as foundational category, 162 Experience as individual cognition, 178 Experience in context, 200–201 Experience shaped by language, 237 Experts, 161, 168–170 F

Feminist practice, 260–261 Focus groups, 208, 227–234, 236, 238, 239

I

Identity, 159, 161–162, 167, 168 Impact, 91–98, 100, 101, 103–109, 115, 117 Individuation, 46, 56 Instability of ‘the Field,’ 11 Instability of titles, 171 Intersectionality, 251–274 Intersectionality, research problems, 251, 252, 254, 257, 261, 271, 273 INVOLVE, 66, 67, 71–73, 75–84, 86 INVOLVE as monopoly, 86 Involvement, 125–132, 135–140, 142–145, 147 L

Language and representation, 72–73 Liminal identities, 110 Lived experience, 158, 161–164, 167, 169–172 M

G

Gatekeepers, 225, 234

Mad Epistemologies, 308 Mad politics, 259

 Index 

Mad Studies, 297–300 Mainstream research, 10, 12, 15, 24 Marginalised groups, 31–33, 38, 40, 47–49, 52, 56 Materiality, 17 Mental health and meaning, 287 Mobilising as speaking back, 5–7 Modifying models, 237–238

321

Peer support, 185, 195 Peer Workforce, 45, 46, 55 Policies, 42–46, 49, 52, 55, 56 Power, 71, 75–81, 85, 86 Practical issues, 131, 135, 142 Process evaluations, 107, 112–115 The ‘psy’ disciplines, 24 R

N

Naming, implications for involvement, 159–161 Non-uniformity, 7–8 Normalisation, 43–45, 55 Numbers and what they represent, 112 O

Official/unofficial histories, 65, 67, 81, 86 Outside officialdom, 86 P

Participatory research, 213, 224–227, 231, 233–236, 240 Patient and Public Involvement (PPI), 65–87 Patient-Generated Patient-Reported Outcome Measures (PG-PROMs), 228, 231

Race, 262–265, 271, 272 Racialisation and madness in the West, 261–266 Reciprocity, 236 Recovery, 32, 39, 43–45, 54, 55 S

Safe places, 32 Science and Technology Studies (STS), 92, 93, 97, 99–103, 117 Self-harm, 255, 258, 259 Settings, 126, 131, 133–134, 140 The sharp end of psychiatry, 266–270 Silencing the mad, 4 Social justice, 189 The social model of disability, 282, 283, 297, 300–303 Soft and strong language, 172 Specificity of psychiatric recipients, 85 Stakeholder engagement–problems, 135, 136

322 Index

Stigma, 256, 259, 268 Stripping of context, 138 Structural violence, 260–261 Survivor research and change, 102–103 Systematic reviews, 213–220 T

Theory and situatedness, 32, 37, 42, 46, 52, 57

U

User groups, 158, 161, 164, 166, 168 User/survivor researcher, 209–213 W

What is a ‘meeting’?, 53, 54 A white survivor movement, 270–272 Who is the ‘public’?, 73 The ‘wild,’ 91–117 Women and madness, 253–257, 260