School of Public Health Faculty of Health Sciences Out of the Blue Giving and receiving care: Aboriginal experiences of care-giving in the context of mental illness Michael R. Wright THIS THESIS IS PRESENTED FOR THE DEGREE OF Doctor of Philosophy Curtin University of Technology December 2008 Declaration To the best of my knowledge and belief this thesis contains no material previously published by any other person except where due acknowledgment has been made. This thesis contains no material which has been accepted for the award of any other degree or diploma in any university. Signed: Michael Wright Date: Acknowledgements I have been truly blessed to have had so many wonderful people who have journeyed with me on the doctoral adventure. Firstly, to the participants whose belief in me and their generosity enabled this project to be realised. To my Supervisor, Dr Katie Thomas, whose guidance through the doctoral maze was exceptional, I am so grateful for her support, wisdom and friendship. To my Associate Supervisor Dr Pat Dudgeon, both as a friend and Indigenous colleague, many thanks for her guidance, wisdom and humour. My mentor, Dr Brian McCoy, who even with the tyranny of distance was an incredible support, his patience, friendship and earthy wisdom were there in my times of need. To the members of the Study Reference Group who gave generously of their time to this project I am most grateful. I am indebted for their time, generosity and wisdom. A special thank you to all those involved in the Capacity Building Grant research program Not Scholars But Leaders; Indigenous team investigator colleagues, Indigenous support staff and lead applicants. I am very appreciative for the support and guidance from Dr Christine Choo for her critical insights. To my family, my sons, their wives, and my grandchildren, I am most grateful for their support. Finally, I dedicate this thesis to two remarkable women: my daughter whose short life ended prematurely through illness, and who was the motivation for my journey into education; she continues to be loved and remembered; and my beautiful wife, Clarissa, whose intelligence, compassion and humour continue to inspire me. Her calmness and wisdom were a place of refuge when it felt like I was spiralling out of control. i Table of Contents Table of Contents Declaration .............................................................................................................. i Acknowledgements ................................................................................................ i Table of Contents .................................................................................................. ii Abstract .................................................................................................................. v List of Figures and Tables.................................................................................... vi List of Abbreviations ........................................................................................... vii Chapter One: A Nyungar Man’s World View – Introduction ................................ 1 1.0 Introduction 1 1.1 Terminology 3 1.2 Background to the study 4 1.3 Widening the fracture of racial discourse 7 1.4 Positioning the study 22 1.5 The silence is deafening 27 1.6 Overview of the thesis 31 Chapter Two: Challenging Colonisation – Literature Review Part 1 ................ 33 2.0 Introduction 33 2.1 Race and modernity: The realities of racism 33 2.2 Racism in the real world: The many faces of racism 37 2.3 Uncovering and discovering: history yours or mine? 53 2.4. Summary 60 Chapter Three: Writing Across Borders – Literature Review Part 2 ................ 62 3.0 Introduction 62 3.1 Working between the cracks – whose mental health? 62 3.2 The paradoxes of modernity 68 3.3. Summary 79 Chapter Four: Toward a New Beginning – Theoretical Perspectives............... 81 4.0 Introduction 81 4.1 Postmodernism and race: The challenge to critical inquiry 82 4.2 Social theory as praxis 91 4.3 Decolonising theory: Toward a new beginning 94 4.4 On Indigenous theory and critical theory 101 4.5 Summary 104 ii Table of Contents Chapter Five: The Time for Indigenous Speaking – Methods ......................... 106 5.0 Introduction 106 5.1 Positioning the study: Locating the Indigenous voice 107 5.2 Insiders/Outsiders: Conducting research in Indigenous settings 112 5.3 Challenging the processes of the academy: Issues of power 121 5.4 Legitimising the Indigenous voice: Ethical research with Indigenous people: 134 5.5 Summary 139 Chapter Six: Silenced Voices No More! – Findings 1 ..................................... 140 6.0 Introduction 140 6.1 Overview of the participants 141 6.2 Experiences of mental health issues: Mental illness is a dark scary place 142 6.3 Experiences of care-giving: Knowing the role 147 6.4 Staying the distance: The emotional, psychological and spiritual dimensions of care-giving 153 6.5 Summary 158 Chapter Seven: Voices of Resistance – Findings 2......................................... 160 7.0 Introduction 160 7.1 Why are you not listening? Experiences of mental health services 161 7.2 Voices of resistance: Letting the silent speak 165 7.3 The politics of silencing 170 7.4 Summary 176 Chapter Eight: Art as Performance – Findings 3 ............................................. 179 8.0 Introduction 179 8.1 Arts-based inquiry and performance 180 8.2 Summary 190 Chapter Nine: Moral Boundaries – An Indigenous Model of Care .................. 192 9.0 Introduction 192 9.1 Mental illness a dark scary place: Experiences of mental illness 193 9.2 Knowing the role: Experiences of care-giving 199 9.3 Voices of resistance: Awakening critical consciousness 208 9.4 Confronting racism: Awakening voices 213 9.5 Standing tall: The morality of care-giving 227 9.6 Summary 233 Chapter Ten: Reframing the work of care-giving – Conclusions ................... 234 10.0 Introduction 234 10.1 Challenging unreflective research practices: An Indigenous research framework 235 10.2 Connecting the dots: An Indigenous model of care-giving 244 10.3 Summary of Key Findings 252 10.4 Where to from here? 255 Bibliography ....................................................................................................... 261 iii Table of Contents Appendices ........................................................................................................ 283 Appendix 1: Study Reference Group Members 284 Appendix 2a: Human Research Ethics Committee of Curtin University of Technology, Letter of Approval, 27 April 2006 285 Appendix 2b: Derbarl Yerrigan Health Service Inc. Letter of Support and Endorsement, 6 April 2006 286 Appendix 2c: Aboriginal Health Council of Western Australia, Letter of Endorsement, 1 May 2006 287 Appendix 2d: Western Australian Aboriginal Health and Information Ethics Committee (WAAHIEC), Letter of Approval, 13 June 2006 288 Appendix 3a: Flyer inviting Expressions of Interest in participating in study 289 Appendix 3b: Participant Informed Consent Form 290 Appendix 3c: Participant Information Sheet 291 Appendix 3d: Questionnaire & Interview Guide 292 Appendix 3e: Demographic Information Sheet 293 Appendix 4: Newsletters to Participants 294 iv Abstract This thesis is an exploration of the experiences of care-giving for Indigenous people living with a serious mental illness. The research included the experiences of those being cared for and those providing care. Due to past negative research experienced by Indigenous people, the study was conducted as a critical ethnography using multiple culturally appropriate methodologies and under the direction of a Study Reference Group. Participants were recruited through a person known to them, a culturally safe method of introduction. Thirteen in-depth case studies were conducted over 18 months, and participants' stories were constructed through multiple interviews, feedback and workshop sessions. Findings included the identification of a serious disconnection between mental health providers and Indigenous Australian families living with serious mental health issues. This disconnection was due to mental health providers lacking understanding of Indigenous needs and of the complexity and concepts of Indigenous care-giving. One outcome from this study was the proposal of an Indigenous care-giving model. The key elements of an Indigenous model of care-giving are the importance of relationships and reciprocity in holding and sustaining culture, and the significance of cultural responsibility. When mental health providers lack understanding of these attributes it has serious implications for their interactions with Indigenous people. This thesis offers recommendations for future research and for improved standards for mental health care provision. v List of Figures and Tables Figure 1: Cheryl's Artwork 183 Figure 2: Cathy's Artwork 183 Figure 3: Daniel's Artwork 184 Figure 4: Sarah's Artwork 186 Figure 5: Gina's Artwork 186 Figure 6: Paula's Artwork 187 Figure 7: Barbara's Artwork 188 vi List of Abbreviations ABS Australian Bureau of Statistics ACSS Aboriginal Community Support Service AMA Australian Medical Association ATSIC Aborigines and Torres Strait Islander Commission CDEP Community Development Employment Programme DYHS Derbarl Yerrigan Health Service GRAMS Geraldton Regional Aboriginal Medical Service HREOC Human Rights and Equal Opportunity Commission MAE Masters of Applied Epidemiology MCMC Merced Community Medical Centre NATSIHC National Aboriginal and Torres Strait Islander Health Council