Mad Knowledges and User-Led Research

ISBN-13: 9783031075537 / Angielski / Miękka / 2023

Diana Susan Rose

Opis

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 author’s 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 ‘what’s 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.

Spis treści

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.

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.

Index.

O autorze

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 King’s 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).

Blurb

“Diana Rose 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.”

—Sue E Estroff, Professor in the Department of Social Medicine, UNC School of Medicine, Chapel Hill, USA

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 author’s 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 ‘what’s 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 King’s 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).