Mad Knowledges and User-Led Research

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).

• 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.