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Fulford et al: The Oxford Handbook of Philosophy and Psychiatry

Personal narratives of madness

Editor: Jayasree Kalathil
Introduction: David Crepaz-Keay, Jayasree Kalathil
Annotations: Jayasree Kalathil, Jasna Russo, Debra Shulkes

Jayasree Kalathil, Independent researcher, Survivor Research, London

David Crepaz-Keay, Mental Health Foundation, London

Jasna Russo, Centre for Citizen Participation, Brunel University, London

Debra Shulkes, Survivor activist and editor, Australia/Czech Republic

Introduction

Madness and storytelling are intimately entwined. We start life, we are given the script, our story written for us. If we stray too far from the script we may be called mad.

People take ownership of their lives and their stories for granted, but once you are labelled mad, you can lose control of both and they can easily become the property of others. You give your story, you receive a diagnosis.

Many people who are labelled mad use telling their story as a tool to take control of their lives back, but this is not a straight forward process. People use their stories in a variety of ways: as a form of therapy and self-help, as a campaigning tool, to share ideas, to illustrate complicated arguments, to prove points. It is, for some, an act of asserting self and experience through language, of ‘re-storying’ one’s self. This collection includes examples of all of these.

Most storytelling is mediated in some way: by journalists, editors, clinicians, publishers, researchers. Even with the advent of the Internet it is still challenging to tell your own story in your own words, and even more so to get people to read and understand your meaning. If losing ownership of your own story is part of the madness process, taking control back may be seen as part of your recovery, but this can often turn into substituting clinical control of your madness with clinical control of your wellness.

The collection, as of now, is predominantly Anglo-centric. In the UK, the US and other countries where a survivor movement has developed over the years, it has often been built on the principle of enabling people to tell their own stories.  This collection includes a number of examples of these. However, this collection also includes examples that do not claim to be part of that movement; indeed some go against the grain of the accepted wisdom that survivor narratives are mainly about resistance and radical change, choosing instead simply to tell their stories without a stated purpose.

The purpose of this collection is to offer a range of stories written by, selected and annotated by people labelled mad. It also contains writings – not always by mad people – that raise ethical and methodological questions about ‘studying’ mad people’s narratives.  It does not purport to be representative or balanced, and although these sound like objective terms they have often been used by people in power to criticise or silence voices they would rather not hear.

What it does is to point towards the diversity of perspectives, analyses, conceptual bases, experiences and identities within this field, in dialogue with, and sometimes challenging, the medical, religious, ethical, cultural and academic authorities that have classified and described madness for centuries. It includes narratives that have played a key role in developing critical thinking by presenting experientially defined models of madness, advancing the human rights of the users and survivors of psychiatry, and consolidating the mental health survivor movement.

Much has been written about the notion of representativeness, and some of these narratives illustrate how the concept is used to marginalise voices that do not conform: to societal norms of behaviour and morality and to academic rules about research and objective scholarly enquiry.

Less has been written about balance. We think that the concept of balance is important and with that in mind, this collection seeks to start the significant task of balancing the overwhelming majority of material written about those who are labelled mad by those who do the labelling and those who study them so that we can see a more balanced whole.

It is anticipated that this collection will continue to grow. Given that story telling is not confined to the use of the written word, a future section on personal stories, told through the visual medium is being planned. We are also mindful that personal stories are not always told in the first person singular and are sometimes told in a collective manner and in dialogue with significant others. We hope to include more of these in the future.

A note on the annotations

The field of personal narratives of madness is rich with the diversity of perspectives, identities and experiences as discussed above. While the process of bringing together this collection and annotating them has been a collaborative one, we have also tried to preserve the legitimate differences of perspectives and have not endeavoured to iron out these differences and present an ‘objective’ whole. The annotations are followed by the initials of the annotators: Jayasree Kalathil (JK), Jasna Russo (JR) and Debra Shulkes (DS).

Acknowledgements

We are grateful to the Mental Health Foundation and to the Laces Fund for their generous support.

About the Authors

Jayasree Kalathil is a researcher, writer and editor, with a PhD in Cultural Studies. A former user of mental health services, she leads Survivor Research, a collective of researchers and trainers working to promote user-led perspectives of mental health and madness. She is the author of the black women’s mental distress narratives report, Recovery and Resilience, and the children’s book, The Sackclothman.

David Crepaz-Keay is currently Head of Empowerment and Social Inclusion for the Mental Health Foundation. He has over 35 years’ experience of visions and voices, diagnoses of Schizophrenia and personality disorder, and 25 years as an activist working to change perceptions and roles of people labelled mad. David has advised national governments and the World Health Organisation on involvement and empowerment and is undertaking a doctorate in effective involvement at Middlesex University. 

Jasna Russo is an independent survivor researcher living in Berlin, Germany. She is a long-term activist of the international user/survivor movement, has a master's degree in clinical psychology and has worked on both collaborative and survivor-controlled research projects. Jasna is currently undertaking a PhD at Brunel University in London with the working title ‘Towards a first person-defined model of madness’.

Debra Shulkes is a psychiatric survivor originally from Australia. As an adult, she relocated to the Czech Republic and became active in the European Network of (ex-) Users and Survivors of Psychiatry. Her work includes human rights advocacy, editing publications and organising in the survivor movement. She writes and is interested in survivor poetry.

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