Mad knowledges and user-led research / Diana Susan Rose.
Rose, Diana Susan.
2022
RC337
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Title Mad knowledges and user-led research / Diana Susan Rose.
Author Rose, Diana Susan.
ISBN 9783031075513 (electronic bk.)
303107551X (electronic bk.)
3031075501
9783031075506
DOI https://doi.org/10.1007/978-3-031-07551-3
Imprint Cham, Switzerland : Palgrave Macmillan, 2022.
Language English
Description 1 online resource
Other Standard Identifiers 10.1007/978-3-031-07551-3 doi
Call Number RC337
Dewey Decimal Classification 616.89/072
Summary This book presents a critical examination of the development of user involvement within research, and investigates the issues currently preventing a productive integration of Mad knowledges within research and practice. Drawing on social, linguistic and critical theories, it proposes the conditions needed to address the development of Mad epistemologies. The authors unique approach deliberately highlights her own positionality and draws on decades of experience as a service recipient, survivor, activist and researcher to illustrate the structural and symbolic barriers faced. Employing concepts including epistemic injustice, individualization, normalization and structural violence, it suggests a radically new way of articulating whats the matter with us? In doing so, the book itself goes some way towards enacting the radical challenge to academic and epistemic hierarchies which, it is argued, will be required to further advance mad knowledges and user-led research. Crucially, it demonstrates how this approach can be both methodologically and conceptually rigorous. This novel work holds important insights for students and scholars across the humanities and social sciences; particularly those working in the areas of critical psychology, disability studies, Mad studies, feminist studies, critical race theory, and Queer theory. Diana Susan Rose retired in 2020 and is now Distinguished Honorary Professor at the Australian National University. She has had two academic careers, interspersed with a period of living in the community having been retired from her first position on mental health grounds. She pioneered user-focused research in a London NGO and subsequently worked at Kings College London where she became Professor of User-Led Research in 2013. Her previous works include This is Survivor Research (2009 co-edited with Peter Beresford, Alison Faulkner, Angela Sweeney, and Mary Nettle).
Bibliography, etc. Note Includes bibliographical references and index.
Access Note Access limited to authorized users.
Source of Description Description based on print version record.
Series Politics of mental health and illness.
Available in Other Form Print version: 9783031075506
Mad knowledges and user-led research
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Intro
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

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