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A Virtual Ethnography of the Madosphere - Exploring a Disrupted Relationship Between Users and Providers of Mental

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A Virtual Ethnography of the Madosphere - Exploring a Disrupted Relationship Between Users and Providers of Mental 1 A virtual ethnography of the madosphere - exploring a disrupted relationship between users and providers of mental health services Victoria Christine Naomi Betton Submitted in accordance with the requirements of a Doctorate of Philosophy The University of Leeds School of Media and Communications March 2016 2 The candidate confirms that the work submitted is her own and that appropriate credit has been given where reference has been made to the work of others. This copy has been supplied on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement © 2016 of The University of Leeds and Victoria Christine Naomi Betton. The right of Victoria Christine Naomi Betton to be identified as Author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. 3 Acknowledgements I would like to thank my family for their support during my PhD study – Alaric, Molly, Ruby and Asa. I would also like to thank my supervisors – Professor Stephen Coleman and Dr Claire Henderson for their wise words and direction. Lastly, I would like to give a massive thank you to everyone who has collaborated with me and had conversations with me from within and without the madosphere – both virtually and in person – I hope this captures a point in time and space for posterity. 4 Abstract My thesis seeks to answer the question: ‘to what extent is the relationship between users and providers of mental health services being disrupted in the madosphere?’ It arises from curiosity about the extent to which online interactions have the potential to interrupt and complicate boundaries between providers and receivers of care. I consider the interplay between mediations of mental health in mainstream media and a space and set of practices I refer to as the madosphere. Through my research I endeavour to answer questions about the intersection of two discourses that are not obviously connected – the treatment of people with mental health problems by institutions and the existence of social networking sites as spaces to share information and develop common cultures. My research endeavours to understand ways in which people accessing and providing mental health services are interacting in particular online spaces; how participants in those spaces are engaging with current social and political issues relating to mental health; how they are encountering and resisting representations of mental ill-health in mainstream media, with a particular focus on stigma and discrimination. I elucidate themes relating to social practices, cultural norms, identity, power formation and impacts on mental health and wellbeing. My research comprises four sub-questions, which are set out below: 1. Disrupted relationships - who is participating in the madosphere, how do participants experience and understand their engagement, and what meanings does it carry for them? 5 2. An account of the madosphere - what are the behaviours, practices and social norms in the madosphere? 3. Re-mediation of representation - how do participants engage with and resist mainstream media reporting of mental health issues? 4. Fractured power and expertise - how do participants engage in themes of identity, power, stigma and discrimination? How are participants resisting and subverting institutional paradigms and discourses relating to mental health? I conclude with a series of recommendations for mental health professionals and institutions in relation to their engagement with social networking sites. 6 Table of Contents Chapters and Sub-Sections Page Chapter 1 – Introduction 1.0 #SamaritansRadar 11 2.0 Research Thesis 13 3.0 The Madosphere Introduced 15 4.0 Stigma and Discrimination 24 5.0 Use of Language 25 6.0 Personal Reflections 27 7.0 Conclusion 28 Chapter 2 A Review of the Literature 1.0 Introduction 29 2.0 Mental Distress - Identity, Power, Stigma and Discrimination 31 2.1 Understanding Mental Distress 31 2.2 The Power of Labels 36 2.3 Patient and Professional Relationships - Boundary 38 Violation, Discourse and Power 2.4 Stigma and its Consequences 42 2.5 Discrimination, Exclusion and Power 47 2.6 Stigma and Discrimination in Mental Health Services 49 2.7 Stigma, Discrimination and Mainstream Media 52 2.8 Symbols and Assets - Effects of Stigma and Strategies 56 to reduce it 3.0 Online Social Networking, Social Capital, Citizen Journalism 60 7 and the Digital Divide 3.1 Affordances of Social Networking Sites 61 3.2 Social Capital and Personal Identity 70 3.3 Citizen Journalism and Communities of Interest 75 3.4 Digital Divide – Limitations to Online Social Networking 79 4.0 Online Social Networking and Mental Health 81 5.0 Conclusions and gaps in the research 92 Chapter 3 Methodology 1.0 Introduction 95 2.0 Online Collaborative Ethnography 96 3.0 The Research Locus 104 4.0 Selection, Sampling and Entry 107 5.0 Research Methods and Tools 113 5.1 Participant Observation 113 5.2 Field Notes 117 5.3 Interviews 121 5.4 Collaboration 126 6.0 Ethical Issues 129 6.1 Information and Consent 130 6.2 Public versus Private 131 7.0 Limitations and Exclusions 135 8.0 Conclusion 138 Chapter 4 Disrupted Relationships: from Silence to Self- Publishing 8 1.0 Introduction 139 2.0 The Madosphere - a New Kind of Madness Network 147 3.0 Talking With my Peers – Consciousness Raising and 152 Shared Identity 4.0 Talking Back to Authority - #DearMentalHealthProfessional 158 5.0 Talking Back to Authority – a Reclamation of Power 165 6.0 Talking with Each Other – People with Lived Experience and 170 Professionals in One Space 7.0 Talking back to Society – Re-Mediating Identity and 176 Challenging Stigma 8.0 Is the Madosphere a Disruptive Space and Set of Practices? 178 9.0 Conclusion 180 Chapter 5 An Account of the Madosphere: the Asylum Disrupted and Reproduced 1.0 Introduction 182 2.0 Why the Madosphere? 184 3.0 Barbed Wires and Madospheres 195 4.0 From Community to Cliques - Shared Rituals and Social 199 Regulation 5.0 Rounding up the Madosphere - Patterned Interactions and 205 Community 6.0 Ceremonies, Privilege and Reward - a Sense of Belonging 208 and Attachment 7.0 Humour, Satire and Collective Action 211 8.0 Finding the Heartbeat of the Madosphere 215 Chapter 6 9 Re-Mediation of Representation 1.0 Introduction 222 2.0 Framing: from mass media to social movements 224 3.0 The Sun ‘1,200 Killed by Mental Patients’ 233 4.0 Asda ‘Mental Patient’ Costume 240 5.0 TWOM and re-mediation of mental distress 251 6.0 The Institution - Retreat or Reassertion? 256 Chapter 7 Fractured Power and Expertise 1.0 Introduction 261 2.0 Purpose and social capital 262 3.0 Star status and mixed blessings 266 4.0 Expertise in the madosphere 269 5.0 Managing identity at a distance 273 6.0 Revealing oneself 278 7.0 Self-presentation of professional identity 285 8.0 Empathy 289 9.0 Conclusion 300 Chapter 8 The Sociable Practitioner and the Sociable Organisation: Conclusion and Recommendations 1.0 Introduction 302 2.0 Relationships and Disruptions 304 3.0 Thematic Insights and characteristics of the sociable 310 professional and institution 10 3.1 The Salience of Agency 311 3.2 To be understood 312 3.3 Who is in Charge? Authority and Power Online 314 3.4 My Tribe - the Power of Peer Support 316 3.5 Learning Beyond the Boundaries of the Institution 319 3.6 Empathy - Relationships Redefined 320 3.7 Resistance! Stigma and Public Attitudes 322 3.8 Being a Bad Patient (and Professional) 325 3.9 Fight Club - Is Disruption a Good Thing? 326 4.0 The Institution Fights Back 328 References 330 11 Chapter 1 Introduction 1.0 #SamaritansRadar On 29 October 2014, the Samaritans, a suicide prevention charity, launched a Twitter application called Samaritans Radar. Its purpose was to monitor the tweets of everyone an individual follows on Twitter and send an alert if keywords were detected that indicate someone may be struggling to cope. Despite the positive intent of the charity, there was an instant outcry from many people who use Twitter to discuss mental health in general and their personal experiences more specifically. Through the ensuing debate on Twitter, and numerous blog posts written on the topic, it became apparent that the mobile application had inadvertently encroached upon an unrevealed ecosystem of people discussing mental health in this space. Firstly, concerns were raised about use of data and the legality of a surveillance application which does not have the consent of people it monitors; secondly, the potential unintended consequence of providing ‘trolls’ an opportunity to more easily seek out and cause distress to vulnerable people was identified; lastly, and most pertinent to my research, many people articulated concerns that the charity had failed to understand how they used Twitter in regard to their mental health. Using the hashtag #SamaritansRadar, people elucidated how they use Twitter to have conversations about mental health with people who are like them and who can relate to their mental distress and suicidal feelings; they shared how their conversations feel 12 safe because they are separate to friends, family and agencies who may not understand them; they described how they feel in control and able to self-mediate their identity. Samaritans Radar was an unwelcome intrusion into an existing ecosystem of cultural norms and mediating practices - it compromised people’s sense of agency; increased emotional distress; changed how people talked about mental health; and some people even removed their accounts or made them private. The Samaritans compounded the dismay of the mental health community on Twitter by at first attempting to defend the mobile application and then ceasing to engage with any conversation about it at all (Samaritans, 2014).
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