‘Between Shadow and Light’: A hermeneutic inquiry of aboriginal families’ meaningful world of caring, ageing and dementia

Rachelle Arkles MA (Social Science), Grad Dip (Media Studies)

Thesis submitted in fulfilment of the requirements for the Degree of Doctor of Philosophy

School of Public Health and Community Medicine University of New South Wales Sydney Australia

August 2014

CONTENTS

LIST OF TABLES ...... vii LIST OF FIGURES ...... vii LIST OF APPENDICES ...... viii ORIGINALITY STATEMENT ...... ix ACKNOWLEDGEMENTS ...... x ETHICS APPROVAL ...... xiii

Chapter One: Introduction to the study ...... 1 How the research begins ...... 2 The dementia experience in studies of Aboriginal and Torres Strait Islander Australians ...... 4 Shifting the interpretive lens ...... 7 The study’s initial research question ...... 8 A study within a study ...... 9 The complexity of the research space ...... 10 The study’s research problem ...... 12 Methodology and approach ...... 12 Methods ...... 13 Researcher motivation ...... 14 My professional life...... 14 Personal and professional values ...... 14 Turning the gaze inwards ...... 15 Significance and contribution ...... 16 Empirical research ...... 16 Existential practice ...... 16 Conceptual contribution ...... 16 Outline of chapters ...... 17

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Chapter Two: Ontology and research: how ‘being-in-question’ changes the shape of the research inquiry ...... 19 Introduction ...... 19 Part A. Ontology and research: the language of “within-ness” in Martin Heidegger ...... 21 Beginnings ...... 21 ‘Being-there’ ...... 22 ‘World and worldliness’ ...... 24 The ‘ordinary everyday’ ...... 25 Disruption ...... 26 Anxiety, angst and care ...... 27 Authentic and inauthentic ‘being’ ...... 28 Presence, absence and ‘unconcealment’ ...... 29 Being-in-question: a stance for research...... 31 Part B. ‘Being-in question’ in the practice of research ...... 31 Introduction ...... 31 Entering into research: from expectation to dwelling in disorientation ...... 32 Entering in: from disorientation to reframing ...... 38 The generative space of ‘being-in’ question ...... 39 Part C. Ontological reflexivity in ‘lived experience’ research: significance and ambiguities ...... 40 Introduction ...... 40 Between the universal and the historical ...... 42 Being, non-being and becoming ...... 44 The times in which we live ...... 46 Summary and conclusion of the chapter ...... 47

Chapter Three: Methodology and research as a ‘lived relation’: self, other, and ‘between’ ...... 48 Introduction ...... 48 Part A. Encountering an(other) in a post-colonial research space ...... 50 Introduction ...... 50 Intersubjectivity in the phenomenological tradition ...... 52 iii

The boundaries of ‘self and other’ ...... 56 The lived relation of research ...... 59 Part B. The colonial legacy and contemporary public health & research practice ...... 60 Introduction ...... 60 The colonial legacy ...... 61 The contemporary research landscape ...... 62 The discomforting space of public health research ...... 64 A workshop ...... 66 Working the space of ‘discomfort’ ...... 68 ‘Fight’, ‘flight’ and ‘facing up’...... 69 Reflexivity between experience, disruption, theory and practice ...... 71 Part C. Dementia as a ‘lived relation’: self, other and ‘between’ ...... 73 Introduction ...... 73 Dementia as brain disease ...... 75 Dementia and personhood ...... 80 Dementia and narrative ...... 83 Summary and conclusion of the chapter ...... 86

Chapter Four: Narrative disclosure: the interview as an encounter in meaning-making ...... 88 Introduction ...... 88 Anticipation ...... 89 Part A. ‘Disclosure research’ as a form of knowledge ...... 91 Towards a feeling of openness in research: experience and meaning as ‘data’ ...... 93 The stance of the researcher ...... 94 The body’s place in knowing ...... 95 The embodied location of the researcher-scientist ...... 97 Embodiment and the lived relation: tensions of difference ...... 99 Modes of reasoning in research: ‘deductive’, ‘inductive’ and ‘abductive’ ...... 100 The philosophical underpinnings of ‘disclosure research’: Heidegger, Gadamer, Ricoeur ...... 103 iv

Part B. Entering into the circle of care: the significance of ontological stories...... 107 Introduction ...... 107 Entering the circle of care: ontological stories as ‘acts of self- disclosure’ ...... 108 Story 1 ...... 109 Story 2 ...... 110 Story 3 ...... 112 Story 4 ...... 113 Story 5 ...... 114 Part C. The ‘inhabited’ space of the research encounter: what lies between? ...... 116 Introduction ...... 116 Ethical questions between private and public worlds ...... 117 The phenomenological questionnaire ...... 121 The encounter with meaning: the nature of inter-relational experience ...... 123 Summary and conclusion of the chapter ...... 128

Chapter Five: Narrative display: disclosing and making ‘worlds’ .. 129 Introduction ...... 129 The concept of ‘world’ ...... 131 The concept of “world disclosure” ...... 133 Part A. World disclosure as a ‘totalising horizon’ ...... 136 Introduction ...... 136 ‘The brain as place’: the totalizing horizon of Aboriginal ‘being-in- the-world’...... 138 ‘Trek of hope for a dementia cure’ ...... 140 Part B. Dwelling in worlds of care: ‘concrete world disclosure’ ...... 155 Introduction ...... 155 The lived relation of caregiving ...... 157 Food is soul ...... 158 ‘Being-with’ in the high care dementia ward ...... 159 The carer as guardian angel ...... 160 v

Tears and confusion in the diagnostic encounter ...... 160 The moods of caregiving ...... 162 Part C. Historical, epochal disclosure: Aboriginal caregivers in twenty-first century ‘dementia’ ...... 166 Introduction ...... 166 The central ideas of historical, epochal disclosure...... 167 The concept of ‘being’ in historical-epochal disclosure ...... 168 A brief history of ‘dementia’ ...... 170 Senility and old age in Aboriginal society ...... 172 Last of His Tribe from My people: a Kath Walker collection, 1970 ...... 173 ‘She sings out … and no-one comes’ ...... 175 ‘You sing out … to let them know you are here’ ...... 176 ‘She sings out’: moving from one mode of caregiving to another ...... 177 Summary and conclusion of the chapter ...... 179

Chapter Six: Concluding discussion: thesis writing as an act of ‘emplotment’ ...... 181 Introduction ...... 181 Enframing the study ...... 183 Facing ‘otherness’ ...... 185 The invisible and the visible ...... 189 Entering-in ...... 192 Circling around ...... 193 Circling back ...... 195 Returning home ...... 195 Concluding reflections ...... 197 In conclusion ...... 198

REFERENCES ...... 200

APPENDICES ...... 224

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LIST OF TABLES

Table 1: Levels of research questioning ...... 9 Table 2: Types of interview questions used in the questionnaire guide ...... 122

LIST OF FIGURES

Figure 1: Field of interdisciplinary research: broad research paradigms...... 11 Figure 2: ‘Trek of hope for a dementia cure’: The Brain and Dementia ...... 142 Figure 3: Circle of disruption and reframing ...... 189 Figure 4: Dual dimensions of caregiving: visible & invisible domains of experience ...... 191

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LIST OF APPENDICES

Appendix 1: Information statement and consent form ...... 224 Appendix 2: Interview guide ...... 229 Appendix 3: Questionnaire guide for yarn-up group discussion...... 232 Appendix 4: Brochure for yarn-up at La Perouse ...... 233 Appendix 5: Brochure for KGOWS yarn-up...... 234

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ORIGINALITY STATEMENT

‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project's design and conception or in style, presentation and linguistic expression is acknowledged.’

Signed ……………………………………………......

Date ……………………………………………......

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ACKNOWLEDGEMENTS

This research has been a journey of questioning, thinking and engaging. For this opportunity I acknowledge and thank the Australian Centre for Population Ageing Research (AIPAR), now known as the ARC Centre of Excellence in Population Ageing Research (CEPAR), for the scholarship I was awarded.

I am grateful to my supervisor, Professor Lisa Jackson Pulver, Director of the Muru Marri Indigenous Health Unit at UNSW, for her support and belief in me and for trusting that the philosophical and methodological journey undertaken in this thesis has many meeting points for engagement in Indigenous health. To Dr Jo Travaglia, my co-supervisor at UNSW, your unwavering support and insightful feedback has been greatly appreciated. To Dr Claire Jankelson, co- supervisor affiliated with Macquarie University, I am indebted to the hermeneutic mentorship you provided me throughout and the quality of engagement you brought to my scholarship.

I would like to acknowledge a number of supportive and helpful conversations I had with scholars in the earliest days of my thesis for which I am grateful including with Dr Lynn Kemp, Dr Dennis McDermott, Dr Jan Ritchie, Dr Lorraine Yap, Hamish Robertson who assisted with the ethics application and who, as did Sally Fitzpatrick, furnished me with useful publications. I sincerely thank Alison Basden for her assistance in formatting this thesis.

I acknowledge four supportive environments that I was privileged to experience during this thesis. I thank Professor Tony Broe and Neuroscience Research Australia as well as the wonderful Koori Growing Old Well Study Team (especially, Holly, Kylie, Cecilia & Auntie Margaret) for providing my PhD with a home base and for opportunities to engage with the ‘parent study’ and its established community networks. In this regard, I acknowledge the guidance and support of the KGOWS La Perouse Guidance Group, the Aboriginal Health Workers (La Perouse), management and staff at the La Perouse Aboriginal Health Centre and the Tharawal Aboriginal Corporation in Campbelltown. Sharon Wall from the Koori Dementia Care Project (KDCP) was very helpful and Dr Simon Chalkley and Professor Brian Draper offered useful perspectives.

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I thank the inspiring team at the Muru Marri Indigenous Health Unit in the School of Public Health and Community Medicine at UNSW with whom I am privileged to collaborate, and acknowledge Marcia Grand Ortega for her assistance in creating a diagram for the thesis.

I am especially grateful to Dr Steven Segal and Dr Claire Jankelson from the Macquarie Graduate School of Business (MGSM) for generously inviting me into their PhD ‘Hermeneutic Circle’. I thank Dr Segal for his part in helping me navigate the complexities of Heideggerian scholarship for real world practice. To the members of the Hermeneutic Circle, especially Dr Amanda Mead for her reading of some chapters, thank you for providing an expansive and supportive space for robust discussion.

At home base, I acknowledge my husband, Phillip, whose unwavering support has enabled completion to occur amidst good humour and forbearance as well as my daughters, Rebecca and Sophie, whose secondary school years have all but flown by as I disappeared ever deeper down the proverbial PhD rabbit hole.

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ETHICS APPROVAL

Ethics Approval for this study was obtained from the Aboriginal Health & Medical Research Council of New South Wales, as approved by their AH & MRC Ethics Committee.

Ethics was Granted for the Project: The Koori Growing Old Well Study: Experience and Meaning of Dementia Sub-Study (745/10).

The Study was granted ethics approval by the UNSW Ethics Committee as KGOWS UNSW HREC8003.

Appendix 1 contains the participant information and consent form.

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Chapter One

Introduction to the study

A Memory

My maternal grandmother’s life ended around a decade short of the 21st Century. She was in her mid-eighties at the time. In the last year of her life, in a residential nursing home in Johannesburg, South Africa, I made one of my weekly visits to see her. In the large room where old people lay in rows of beds, I found her seated on the edge of a bed-side chair. As I came into her line of vision, she lurched towards me. Her eyes were magnified through her large spectacles and her demeanour was agitated. She started speaking in a language I did not understand. It was the vernacular of her upbringing in Eastern Europe. I was startled by this outpouring. She grabbed my arms tightly and urged me in her mother tongue and snatches of English, “Hurry …. Leave … Police…. Police coming… Hurry home”. I tried to reassure her but it was no use. I left feeling unsettled and disoriented.

It is now over twenty years later and I find myself working on a study of ageing and dementia. The study of which I have become a part, and of which my thesis is a sub-study, is a population based study of health and ageing in urban and regional Aboriginal communities1. A major part of the Koori Growing Old Well Study’s focus are the risk and protective factors for cognitive decline and dementia and their prevalence in Aboriginal people sixty years of age and older. This study - the thesis research - is specifically concerned with the question of the experience and meaning of dementia from the perspective of the primary family caregiver of an older person in cognitive decline or dementia.

1 The Koori Growing Old Well Study, Aboriginal Health and Ageing Research Program, Neuroscience Research Australia & University of New South Wales; (NHMRC Project Grant 510347), 2008-2012 1

I reflect on the elders in my own family to search for any personal experience with dementia but I cannot find any. Nor can I articulate any clear assumptions about dementia, as I am not aware that I have ever personally encountered it. This is my belief at the time.

I have instead, a generalised image of ‘senility’ as something that happens to people when they become very old. Until I begin work on this study, I have not thought much about dementia. I have not noticed much publicity around dementia, nor do I have any knowledge of its clinical, managerial, behavioural or social aspects. At this stage of my inquiry, I can neither find nor articulate how dementia is understood in my own experience.

In this sense, I embrace the words of the contemporary human science scholar and practitioner, Max Van Manen, who argues that ‘it is better in phenomenology to know too little of a phenomenon than to know too much’ (1990, p.46). This perspective arises because of the need to ‘bracket’, or at least to make explicit one’s assumptions, presuppositions and prior knowledge about a given phenomenon – in this case dementia - in order to ‘see’ and ‘hear’ in a phenomenological sense, ‘the experience of others’, “as if for the first time” (Van Manen 1990, p. 46-7).

In a more hermeneutic interpretation of researcher reflexivity, Michael Crotty, argues the need for, “calling into question the current meanings we attribute to phenomena” (Crotty 1998, p. 82). With these reflective urgings in mind, I begin with the background to the point of my initial engagement with the thesis.

How the research begins

This study evolves out of my involvement in a literature review addressing ageing, cognition and dementia in Australian Aboriginal and Torres Strait Islander peoples (Arkles, Jackson Pulver & Robertson et al. 2010)2. This

2 The literature review Monograph can be found at the following link: https://www.neura.edu.au/sites/neura.edu.au/files/Full%20Literature%20Review%20Aug201 0.pdf 2 literature review is conducted in light of demographic changes in the Indigenous population toward population ageing and with preliminary knowledge of exposure to multiple risk factors across the life span for cognitive decline and dementia. Initial data on dementia prevalence from the Kimberley region of Western Australia - at the time the literature review is conducted - signals a public health concern with the finding that remote living Indigenous Australians are almost five times more likely to develop dementia than the rest of the Australian population.

From this initial literature review, a number of important insights, findings and gaps become apparent. Firstly, it is evident that dementia, as a disease of the brain, needs to be framed within a socio-political, historical and trans- generational context – as with other chronic diseases - in order to grasp the differential degree of risk between Indigenous Australians and their non- Indigenous counterparts. Secondly, many of the risk factors associated with a greater chance of developing dementia in later life in non-Indigenous populations are present in the health and social profile of Indigenous Australians, making this an ‘at risk’ population from a public health point of view. Thirdly, the literature available indicates that dementia is viewed differently across different cultural environments, including amongst Aboriginal communities. There is also the finding that dementia may not be recognised as an illness. Finally, there is little, if any, information from caregivers themselves on the meaning and experience of caring for a person with dementia in Australia’s Aboriginal and Torres Strait Islander populations.

This study is motivated by these contextual findings and aims in particular, to address the experience of family carers of an older Aboriginal person.

This document contains a fulsome list of references to substantiate the brief overview contained in these paragraphs. These studies are referenced later in the document where they are cited in the text 3

The dementia experience in studies of Aboriginal and Torres Strait Islander Australians

Studies of dementia prevalence and its sub-types for Indigenous populations, both in Australia and other comparable countries, are in their relatively early phases (Zann 1994; Pollitt 1997; LoGiudice, Smith & Thomas et al. 2006; Jervis and Manson 2002). As the Aboriginal and Torres Strait Islander population ages this scenario is changing and in the period since the monograph’s literature review a number of recent studies of dementia prevalence and dementia care and service need have been published (Smith, Flicker & Shadforth et al. 2011; Radford, Mack & Robertson et al. 2014; Radford, Mack & Wall et al. 2014).

Pollitt’s (1997) study was the first to review what was known about dementia in Aboriginal and Torres Strait Islander communities. She identified from a number of localised rural and remote studies distinctions in the way behaviours characteristic of cognitive decline were perceived and spoken about. These included, behaviours described as ‘sickness’, ‘disturbed’, ‘madness’, ‘childlike’ and ‘tiredness’. Pollitt also identified in her review what behaviours associated with cognitive decline could not be tolerated within the community’s normative functioning. These included, “…[W]hen an individual is no longer able to recall ceremony business, identify kinships and skin groups, no longer knows what the taboos are …then the community will seek help” (1997, p. 158). Further, descriptions of people with more severe manifestations of cognitive decline as, “not a person anymore”, or as “a reason for sorrowing” (p.158), point to the grief and bewilderment experienced by family and community members as well as suggest the social ostracism that can occur when confronted with some of the behavioural effects of cognitive decline on the family and wider community.

Indeed, Pollitt described the concept of dementia in her review as ‘intrinsically paradoxical’ given the ‘small numbers of Indigenous people reaching old age’ and her finding that dementia is generally unrecognised as a medical condition. Community based consultation studies have since reported that it is not uncommon in Aboriginal and Torres Strait Islander communities for people to have little knowledge of what dementia is and for it to be viewed as ‘a natural

4 part of the cycle of life and death’ (Alzheimer’s Australia Northern Territory 2002; Alzheimer’s Australia 2006).

This finding is echoed in a Canadian study of First Nations as the ‘traditional view’ of “going through the full circle [of life]” which is held by some in the community, but as the Canadian study found, other elders view dementia as ‘your dementia’ to refer to a phenomenon found in ‘White’ society (Hulko, Camille, Antifeau et al. 2010).

Much has changed, however, in the period since Pollitt’s review was published. It is now recognised that Aboriginal and Torres Strait Islander populations are ageing in a manner consistent with Indigenous populations in comparative countries, such as North America, Canada and New Zealand, as well as with non-Indigenous populations in Australia (Broe 2003; Smith, Flicker & Lautenschlager et al. 2008; Arkles, Jackson Pulver & Robertson et al. 2010).

While the phenomenon of old age decline, memory loss, confusion and behavioural change is not in itself a new phenomenon for Aboriginal and Torres Strait Islander populations (Reid 1985), what is new is its increasing visibility in communities as the population ages; and that it is now being spoken about as a ‘disease of the brain’, a medical condition.

There is much we can learn from understanding more about the way people in community talk about old age dementia. An illuminating perspective comes from the words of Mr Eric Deeral from an Elders Group in Queensland, to a national workshop addressing dementia in the Aboriginal and Torres Strait Islander population. Mr Deeral spoke about ‘dementia’ in the following terms: “a sick spirit; a lost spirit looking for help… It may not need to get fixed as long as the individual is safe and the family and the community are safe… Other causes of a sick spirit are the past history of the stolen generation, dispossession, physical, social and emotional trauma, child abuse, drug and alcohol abuse, poor diet, a lack of traditional healers and herbal medicine being understood and used” (Eric Deeral, quoted in Alzheimer’s Australia 2006, p.2).

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The language of ‘dementia’ in this conceptualisation bears little relationship to the biomedical language of dementia and its aetiology, and yet what is being described is a language around risk to health and wellbeing, its historical and intergenerational aspects. This raises important questions for the ways in which dementia is perceived and experienced in diverse Aboriginal and Torres Strait Islander communities, but importantly, it also raises questions about approaches to dementia research which incorporate the presence of history and context into inquiry as an explicit focus of methodological concern.

Since the earlier dementia studies more information has come to light and several Indigenous communities in regional, remote and urban settings are now part of collaborative studies involving dementia researchers, community representatives, community based care workers and service providers (Smith, Flicker & Shadforth et al. 2011; Radford, Mack & Wall et al. 2014; Radford, Mack & H. Robertson et al. 2014). These initiatives are beginning to have flow on effects in Aboriginal communities as increasing conversations about dementia with Aboriginal Medical Services and other health and social providers occur (KDCP Final Report 2013).

In Smith and colleagues (2011) study in the remote Kimberley region of Western Australia, caregivers and service providers suggest ways to improve dementia care for those in their community. Caregivers talk about their ‘cultural and family responsibilities’; ‘the necessity to keep the older person in the community’; and ‘acknowledging the important role that the older person has in keeping the family together and in passing on cultural knowledge and language’ (p.4). They identify the imperative of community based care ‘to keep the elderly people in Country’ so they can ‘feel connected’ and ‘pass in their Country’ (p.6). They identify the need for dialogue which, in the words of a carer interviewed, “should be a two-way thing: community and the service provider and the carer and the person that’s being cared for and the whole family …’gotta be sit down and worked out together’” (p.6).

Smith and colleagues study provides a compelling glimpse into aspects of the dementia experience and the need for care, services and support for families and communities in this remote part of Australia. Significantly, it draws

6 attention to the importance of effective intercultural and dialogical work in meeting this objective.

I am left with many questions however:

 I wonder how ‘dementia’ is experienced and articulated by Indigenous families in urbanised settings; and how this coheres with the language and perspectives of bio-medical understanding

 I wonder what drives the care decisions and actions taken by family members

 I wonder what ‘sitting down and being worked out together’ means for mainstream environments of dementia research, care and service provision

 I wonder how the experiences and interpretations of researchers and practitioners might themselves shape the ways in which ‘dementia’ in Aboriginal and Torres Strait Islander communities is presented in the public domain

 Finally, I wonder how ‘dementia’ as a contemporary phenomenon of population ageing is ‘held’ by families within the urban living communities that the Koori Growing Old Well Study is collaborating with and in which this study is embedded

This study takes as its starting point for inquiry the occurrences of daily life in a family caring for an older person with cognitive decline or dementia.

Shifting the interpretive lens

There are two significant features of the approach taken in the initial literature review which brings me to the start of this thesis study. Firstly, the literature review begins with an operational definition of dementia as a disease of the brain. While this is an appropriate methodological lens for approaching dementia in a biomedical paradigm, moving into a phenomenological inquiry 7 means I can make no assumptions as to the understandings, relevance or purpose of the diagnostic label ‘dementia’ in its Western bio-medical sense.

From the phenomenological view point it is not the scientific knowledge around dementia or its bio-medical language that is significant. Rather, it is through the everyday occurrences of caring for someone with a ‘dementia’ that its meaning in Indigenous families will be illuminated.

Secondly, the initial literature review begins with reference to Aboriginal and Torres Strait Islander Australians as a population category. This whole of population lens is appropriate to review what studies exist in Australia’s Aboriginal and Torres Strait Islander populations; and is also required for obtaining research funding in a ‘priority target population’.

Yet, in a phenomenological study of ‘dementia’ as a day to day experience a ‘whole of population’ lens is problematic. As the medical anthropologist, James Waldram (2006, p.72), argues, ‘it assumes a notion of ‘culture’ rather than asking what is the culture in question here?’

These shifts in the interpretive lens define how I begin to approach this phenomenological thesis study.

The study’s initial research question

The central question for this study asks:

What is the experience and meaning of ‘dementia’ for family caregivers of an older Aboriginal or Torres Strait Islander person?

 What is it like to be a family carer entrusted with the care of an older person in decline?

 How do I portray the richness and complexity of this experience?

This question gives rise to three levels of researcher questioning which thread through the study’s inquiry. These include layers of empirical, reflective and

8 conceptual questioning each with a different purpose and intention for the researcher. These levels of questioning are shown in Table 1.

Table 1: Levels of research questioning

A study within a study

My position as a doctoral researcher with a phenomenological orientation within a broader population based study affords me a unique vantage point. The location of my study within the larger population study places the two studies in relief, highlighting that which is foregrounded and backgrounded in importance to achieve the objectives of the respective studies. I am able to experience from the inside the differences between researching in the interpretive mode (the 9 thesis study) whilst being a close observer to research in a more positivist mode (the approach of the population study). In both these modes, we as researchers enter into a relationship to our inquiry with a sensitivity to the importance of relationship building and appropriate cultural protocols for ethical practice in the context of community based research with Indigenous communities3.

There is however, a distinguishing feature in these respective modes of research practice. In the population study, there is careful monitoring of the researcher’s place within the researcher-participant encounter with the aim being impartiality of the research methods. Ambiguities, contingencies and uncertainties are placed aside in the interests of the imperatives of standardisation and comparison as a core feature of the epidemiological requirement.

By contrast, in the study I am engaged in, I intentionally enter into the corporeal space of the interview encounter as a resource for knowing. I engage with moods of disruption and disorientation (both my own and those of participants) as a means of questioning the concepts I bring into the study. My existential discomfort – moods, anxieties, disruptions - and ‘felt experience’ (Gendlin 1962; Todres 2007) is a portal for opening up to experience, in other words, opening up to the phenomenon under inquiry. In so doing, it reveals an ambiguity in the research question, namely, whose experience and meaning is relevant in this inquiry?

The complexity of the research space

This study is embedded in a complex and contested research environment which arises from Australia’s colonial history and its ongoing reverberations for research and practice in the contemporary Indigenous non-Indigenous research space. While the study begins with the centrality of the family caregiver in an Aboriginal ‘world’ of ageing and dementia, it is at the heart a study of ‘being-in-

3 See for example, AIATSIS (2011) Guidelines for Ethical Research in Australian Indigenous Studies, http://www.aiatsis.gov.au/research/docs/GERAISjune2011.pdf

10 research’ in this complex space. It grapples with these tensions by drawing on a scholarship, namely, hermeneutic phenomenology that addresses existential disruption as a necessary condition for working with and through the dilemmas and disconcertments that research and practice in a post-colonial world brings forth. This entails a scholarly conversation between research paradigms, as shown in Figure 1.

The question that arises for me in this context is what does it mean to be a researcher in this space?

Figure 1: Field of interdisciplinary research: broad research paradigms

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The study’s research problem

With this burning question, I confront two dilemmas for this study. These become the underlying questioning for the inquiry which I frame as the study’s research problems. These are:

 How do I disclose the ‘world’ of dementia for Aboriginal family caregivers and in so doing disclose my own ‘world’ as a ‘researcher- in- the-world’?

 What does it mean to enter into ‘the shared intersubjective space that is the research encounter’4 in a post-colonial environment?

These questions demonstrate the hermeneutic flow of the study as it transitions from an envisaged descriptive phenomenological inquiry of dementia perception and experience to a realisation that the phenomenology I am engaged in is closest to an existential, hermeneutic practice (Laverty 2003; Glendinning 2007).

These questions shift the focus of the study’s inquiry from the subjective experiences of the participant to the ‘lived experience’ of the research relation. Further, these questions bring the palpable presence of the research space to the forefront of the inquiry, to paraphrase Heidegger, as the ‘context of concerns’.

Methodology and approach

I identify the scholarly framework for this thesis in existential hermeneutic phenomenology. I work with this scholarship in the following ways. Firstly, I approach it as a philosophy and methodology. Secondly, I embrace it as an existential approach to ‘being-in’ the practice of the research. Thirdly, I draw on the notion of temporal historicity, the way time and history are expressed in human experiencing, and which resonates deeply with Indigenous thought (Muecke 2004; Swain 1993).

4 Linda Finlay, 2006, Op cit. 12

As I show through the study the individual story is entangled in the wider historical narrative (Mankowski and Rappaport 2000). In a similar vein, my narrative as researcher and those of participants are entwined in a common history, that of colonisation itself (Jones and Jenkins 2008).

Methods

The study uses the following methods to gather experiential ‘data’:

 In-depth ‘conversational style’ interviews (Appendix 2) with five family carers, two of whom were interviewed three times over the course of a year

 Maintenance of a fieldwork journal to document the ‘data’ of my own experience; my reflections on the research process; and my learning from engagement with communities

 ‘Yarning Circles’ with three groups of ‘stakeholders’

 a carers group, Campbelltown, 28 Oct 2011 (Appendix 3)

 ‘dementia yarn up’, La Perouse Aboriginal Health Centre, 18 November 2011 (Appendix 4)

 ‘dementia yarn up’, Aboriginal Corporation Medical Service Tharawal, 22 June 2012 (Appendix 5).

The fieldwork for this study takes place in two urban areas of Sydney, La Perouse and Campbelltown, both geographic locations with sizeable numbers of Aboriginal families.

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Researcher motivation

My professional life

During my research practice over many decades, there have been times when I experienced emotional, ethical, personal and professional disruption. I negotiated my way, often, through the impartiality of conventional research practice on the one hand, and the impassioned writings of conceptual scholars on the other. What I have not embraced explicitly, has been an approach to scholarship that recognises existential disruption as a necessary condition for working with the dilemmas and discomforts of research in the ‘real world’; which brings together the empirical and the theoretical in an interplay with the experiential; and which holds ‘being’ and ‘knowing’ as indivisible aspects of research learning and practice. By embracing existential hermeneutic phenomenology, I hope to bring an elevated awareness of ‘professional attunement’ into the experience between myself and others in research practice (Benner and Wrubel 1989); to open up to new and expanded areas of meaning, and to connect in the meeting points for engagement with Aboriginal and Torres Strait Islander peoples and perspectives.

Personal and professional values

In August 2009, I attended the launch of the Indigenous Policy and Dialogue Research Unit at the University of New South Wales given by the Aboriginal leader, Patrick Dodson, who was appointed its Director. The impact of Professor Dodson’s talk left an indelible impression on me. It also reawakened a dormant interest of mine in philosophy. Dodson talked about ‘the timeliness of a national dialogue in which our philosophical foundations are revealed in order to redefine who we are; where we have come from and where we are going’. He posed the questions, ‘how do we start to listen; ‘to engage in dialogue’; ‘to hear each other’, in order for new paradigms of relating and knowledge to emerge’. I began to feel a sense of excitement, hope for Indigenous non-Indigenous research endeavours and a renewed energy for my work. I left the meeting contemplating what his words might mean both for where I position myself in 14 this research at a personal level as well as for my practice as a public health practitioner, academic and advocate.

Turning the gaze inwards

As a researcher I face my own crises in navigating the complex landscape of my study. The ontological-existential questions, ‘who am I’ and ‘how am I to go on’ (Kompridis 2006), in this inquiry are fraught within the context and the legacy of my personal history and background: as the grandchild of grandparents fleeing persecution and annihilation in Europe; as a ‘white’ person in the country of my birth, South Africa; and as a migrant who entered into a complex history of colonial race relations in my adopted country, Australia.

I have grappled with ‘otherness’ in relation to three experiential contexts of dislocation: the ‘othering’ of my grandparents and their generation whose lives were caught up in the conflagrations leading up to the second world war and culminating in the extermination of family members during the holocaust. My years growing up in Apartheid South Africa, where what counted as normal in an abnormal society produced inner conflict and turmoil as a constant subterranean presence; and my encounter with Australian society over the last few decades with its ongoing ‘presencing’ of colonization’s history and legacy (Bhabha 1994).

From the experience of my forebears on the receiving end of prejudice and oppression to my own existence on the side of ‘white’ privilege and normativity, matters of race, prejudice and persecution; identity and identification; power, privilege and poverty have been preoccupations of my existence. They play their part in how I approach this inquiry.

In the Aboriginal communities in New South Wales in which I conduct my research, there are ongoing reverberations of Australia’s colonial history with its legacy of racist policies and practices. The existential pain this generates is palpable in the homes I have been into, the interviews I have conducted, the community gatherings I have attended, and the funeral orations that have been

15 delivered. This challenges my methodological stance and practice as it exerts the constant question of how to go on in a highly charged research space. Equally, it is the wellspring from where I draw my motivation for working with others in Indigenous health.

Significance and contribution

This study carves a unique place in the literature on the dementia experience in urban Aboriginal families. It enlarges existing cultural conceptions for framing the dementia experience of Aboriginal and Torres Strait Islander families; and for elucidating the role of the researcher in the meaning making process. Its major contribution is that it extends a hermeneutic interpretation to the domain of an Indigenous non-Indigenous cross cultural health encounter.

The study makes the following contributions to knowledge in the field:

Empirical research

 This study provides original research in an area of growing public health concern, namely, dementia in Aboriginal and Torres Strait Islander populations

 More specifically, it contributes to an emerging literature on the experience of carers in Australia, in particular, the experience of Aboriginal carers in urban communities

Existential practice

 This study contributes to a growing body of scholarship addressing research as practice and thus makes a contribution to experiential learning

Conceptual contribution

 This study extends existential hermeneutic phenomenology to unveil the ‘world’ of caring, ageing and dementia in Aboriginal families

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 Using Brodaty’s (2009) notion of ‘the caregiver as second patient’, it extends Svenaeus’ conception of ‘homelike and ‘unhomelike’ ‘being-in- the body’ from the person with the illness to the experience of ‘being-in- dementia’ for the family carer.

Outline of chapters

This thesis unfolds in a questioning form with each chapter setting out to engage with a dilemma. In the tradition of a hermeneutic inquiry the literature for the study threads throughout the thesis.

In this first chapter, Introduction to the study, I have provided the context and the background for the thesis and indicated my engagement, purpose and motivation for the study. I have identified the aims and objectives of the study as well as the study’s research question and research questioning as a multi- layered process unveiling empirical, reflective and conceptual dimensions. This approach acknowledges the complex, contested and interdisciplinary nature of the scholarship in which this thesis is embedded.

Chapter Two, Ontology and research: how ‘being-in-question’ changes the shape of the research inquiry, explores the relationship of ontology to the discipline and practice of research. The chapter is divided into three parts. In Part A, I introduce the reader to key concepts in Heidegger’s lexicon as this scholarship holds the philosophy, methodology and analytical frame for this study. Part B is an account of how ‘being-in-question’ changes the shape of the research inquiry and provides fertile ground for the experiential learning that takes place. Part C asserts the importance of ontological reflexivity for research inquiry and addresses its possibilities and its ambiguities.

Chapter Three, Methodology and research as a ‘lived relation’: self, other, and ‘between’, addresses the question of how as researchers in our world we reach others in their world in an Indigenous non-Indigenous research space. Part A considers the ways in which intersubjectivity is approached in the phenomenological tradition. Part B considers approaches to ‘tensions of

17 difference’ in light of the legacy of colonization for research and practice in public health and medicine. In part C, I consider the ‘lived relation’ of dementia as a contested area itself.

Chapter Four, Narrative disclosure: the interview as an encounter in meaning making, and Chapter Five, Narrative display: disclosing and making ‘worlds’, set up the framework of meaning for strengthening the analysis of the research. These two chapters dwell explicitly in the ‘data’ of participant experience as well as elucidate my own experience as a ‘situated’ and reflexive researcher. The interview as an encounter in meaning making is an important part of narrative disclosure in Chapter Four. In Chapter Five, I draw on a tradition of research which works with Heideggerian notions of “world disclosure” to address the manner in which ‘a world’ becomes intelligible to us and through which we can display some of its meaningful quality.

In Chapter Six, Concluding discussion: thesis writing as an act of ‘emplotment’, I consolidate the total intelligibility of the study’s research story by framing the writing of this thesis in the notion of narrative ‘emplotment’. I reflect on the way I move through the scholarship backwards and forwards in a manifold dialogue: between my own experiencing and the discourse of scholarly texts; between the ‘data’ of my own experiencing and the ‘data’ of participant experience; and in reaching for the ‘situated’ research story that is unfolding. I reflect on the value of the study in having foreground the ‘context of concern’ in which dementia caring takes place.

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Chapter Two

Ontology and research: how ‘being-in- question’ changes the shape of the research inquiry

“We stand in some relation to the meaning of being in the question” 5

Introduction

In Chapter One I identify the scholarly framework for this thesis in hermeneutic phenomenology. Two aspects of this scholarship can be distinguished. On the one hand, there is hermeneutic phenomenology as a philosophy and methodology for the human sciences. On the other, there is hermeneutic phenomenology as an existential ontology or way of ‘being-in’ research. In this distinction there are two inter-related ideas to grasp. The first is that while there are distinctive aspects to ontology and methodology, in hermeneutic phenomenology these are indivisible in practice. It is this indivisibility that is at the core of the seminal philosophical contribution to Western thought in Martin Heidegger’s philosophy of existence. It is our ‘inseparability’ from the world that is encapsulated in Heidegger’s notion of ‘being-in-the-world’ (Harman 2007, p. 61). This thought challenges the pervasive influence of dualism in Western thinking whereby notions of subject and object and mind versus matter are postulated as separate domains in human knowing6.

The second idea to grasp is that there is an intimate relationship between a study’s research question and the underlying intention of its researcher. The

5 Jonathan Ree (1999). Heidegger,p.8. Routledge, New York, NY 6 This tradition is exemplified in the ideas of Descartes, who became ‘a figurehead’ for scientific realism. See for example, Lisa Bortolotti, An Introduction to the Philosophy of Science, 2008, Polity Press 19 significance of this as Jonathan Ree writes is that, “we stand in some relation to the meaning of being in the question” (Ree 1999, p. 8).

The research question is therefore not merely a starting point or an end point for the outcome of the inquiry but a vehicle for our learning from being within the practice of the research itself. One can therefore reasonably ask the question: what does the idea of ‘being’ have to do with inquiry, and further, what are the exigencies of my ‘being’ for this inquiry?

This chapter explores the relationship of ontology to the discipline and practice of research. It does so in a framework that encompasses existential hermeneutic phenomenology, which Todres and Wheeler (2001), describe as ‘natural bedfellows’ (p.6). In Part A of the chapter I identify key concepts in Martin Heidegger’s philosophy of existence which point to the meaningfulness of ‘being’ as foundational for all inquiry. Part B provides an account of my ‘being- in-research’ as the ground from which my questioning changes the shape of the research inquiry. Part C of the chapter considers the notion of ontological reflexivity in Heidegger’s scholarship and points to the possibilities and ambiguities it presents for contemporary research practice.

The Heideggerian concepts discussed in this chapter provide what has been described as a language of “within-ness” 7and a conceptual framing for making sense of the ‘lived experience’ of this research which is at the heart of this study’s interpretive inquiry of family carers in an Aboriginal world of ageing and dementia. Furthermore, ‘being in question’ is the stance which discloses my world as a ‘researcher-in-the-world’.

7 The language of “within-ness” in Heidegger is used in relation to his notion of ‘world’ and the “within-ness” of Dasein, the experience of ‘being’ that is unique to human beings. See, Michael Wheeler, “Martin Heidegger”, The Stanford Encyclopedia of Philosophy (Spring 2013 Edition), Eward N. Zalta (ed.), URL = . 20

Part A. Ontology and research: the language of “within- ness” in Martin Heidegger

Beginnings

The question of the meaning of ‘being’8 is a question of where and how to begin. I take from the philosopher Simon Glendinning’s (2007) account of ‘beginnings’ in Heidegger’s fundamental ontology something pragmatic for this study. That is, the idea that, “we have a vague average understanding of ‘Being’ although we don’t know conceptually what it signifies” (Glendinning 2007, p. 62). In relation to the underlying questioning for this thesis, namely, what does ‘being’ mean for inquiry, Heidegger’s major work, Being and Time, is as Glendinning writes, ‘a philosophical analysis’ for rendering visible that which is only known to us in a vague sense.

The relevance of the question of ‘being’ for inquiry is found early on in Being and Time (1962). Heidegger’s main argument (and I paraphrase) is that the study of ‘Being’ (the ontological) is foundational to the study of ‘entities’ (the ‘ontical’), yet much of Western thought has ‘forgotten about the meaning of ‘Being’ and has instead focused on inquiry into facts about ‘things’’. In this conception the ontological and the ‘ontical’ are differing planes of inquiry, yet it is the ontological dimension that gives ‘entities’ in the world their meaning.

It is important at the outset to distinguish between two dimensions of ontological thought in Heidegger. One is concerned with the very ‘being of what is’, the ontological basis of ontology itself (Dreyfus 1991). The other dimension of ‘being’ is concerned with the nature of our existence in the world as ‘beings- in-the-world’. Harman frames this distinction as a difference between ‘the meaning of being as opposed to the meaning of being of specific entities’ (Harman 2007, p. 45-6). ‘Being-there’ in the former sense, is ‘being’ in the face of the inescapable anxiety which acknowledges our ‘being-towards-death’ as part of the human condition. In the realisation of this existential certainty there

8 In this thesis I use lower case to denote ‘being’ in its meaning as the ‘being of all human beings’. I use the upper case where it used as such by scholars which I cite, and where it denotes the ‘Being’ of being itself 21 is nothing left to rely upon in the ‘public world’ – no words, no distractions, no way of escaping death’s inevitability.

The other dimension of ontological thinking in Heidegger is the concept of ‘being-there’ which as ‘beings-in-the-world’ refers to a mode of existence in the world. This approach realises that everything in the world has a referential relationship to everything else in its ‘world’, hence Heidegger’s notion of ‘being- in-the-world’ – which incorporates ‘being-with-others’ - as the horizon of intelligibility open to ‘being’.

It is this sense of ‘being-there’ that this study of dementia experience and meaning is about. In other words, what does it mean to be a caregiver in an Aboriginal ‘world’ of ageing and dementia? In reaching for this understanding as a researcher, ‘being-there’ is also about what it means to be a ‘researcher-in- my-world’ in this ‘world’.

Yet it can also be said that in coming face to face with ageing, dementia and end of life one cannot escape the idea of ‘being-towards-death’ which is heightened in the existential state of anxiety and dread as caregivers confront the decline and mortality of the elders they care for. This ontological state exerts a pervasive presence in this study.

‘Being-there’

If there is a single word associated with Heidegger’s philosophical scholarship it is the term ‘Dasein’. The German word literally translates as ‘there’ (da) ‘being’ (sein). It refers to the ‘existence of anything at all’ but as Graham Harman points out, for Heidegger ‘Dasein is a property belonging to human beings in that it is human beings who have the capacity to be philosophical’ (Harman 2007, p. 2-3).

The notion of ‘being’ in Heidegger encapsulates time. Life itself in this conceptualisation is like time, ‘a threefold structure of past, future and present’ (Harman 2007, p. 28). Moreover, there is an inescapable tension in this experiencing of life as time, for as Harman (2007) writes, we must deal with 22

‘what is given to us in the past, we must confront it as our present, and we must actualize its possibilities for the future’ (p. 28-9).

In a scholarly blog for The Guardian, the philosopher, Simon Critchley, points to two dimensions of this notion of temporality. One, is that ‘we exist as ‘beings’ in time’; the second, is that ‘we as human beings embody time, in the sense that we have a past and a personal and cultural history’. As Critchley states, “the complexity of this idea is our projection towards the future but what comes out of the future is my past, my personal and cultural baggage, what Heidegger calls my “having-been-ness” (gewesenheit)”9.

The interplay of temporality and historicity in Heidegger’s thought points to a ‘world’ into which we are all “thrown” and which by its very nature forms the terrain of our ‘everyday’ perceptions. In this historicized notion of ‘being’, we exist in an everyday world of presupposition which is ‘inherited as layers of history, culture and tradition’ (Harman 2007, p.32).

In this conceptualisation of Dasein or ‘being-there’, Heidegger demonstrates his distance as a phenomenological thinker from Edmund Husserl, the latter regarded as ‘the father’ of the phenomenological movement (Glendinning 2007). As Simon Glendinning demonstrates in his book, In the Name of Phenomenology (2007), both Heidegger and Husserl focused on the relationship between philosophy and science and both saw phenomenology as a counter to the domination of ‘scientism’ with its prevailing dualist thinking. However, there are key differences in their approach which Glendinning elucidates and which I paraphrase here.

Husserl’s phenomenology proposes that it possible for human beings to quarantine their perceptions and presuppositions through the process Husserl termed ‘the phenomenological reduction’. This process entails the ‘bracketing’ of our assumptions or presuppositions in order to elucidate the ‘essence’ or the underlying structure of a given phenomenon. By contrast, in Heidegger’s thinking the idea that one can see something largely for what it is by setting

9 Simon Critchley (2009), Guardian Series. Heidegger’s Being and Time, part 8: Temporality. http://www.theguardian.com/commentisfree/belief/2009/jul/27/heidegger-being-time- philosophy. Accessed 5 June 2013 23 aside one’s own presuppositions about it falls into a mistaken belief that a thinking subject can exist in a separate domain in a world which is the object of its intentional thought.

By contrast to Husserl’s idea that we apprehend phenomena as a consciousness about something outside of ourselves Heidegger is concerned to show the indivisibility of ‘being’ and ‘world’. This is Heidegger’s ‘unified structure’ of ‘being-in-the-world’ (Harman 2007, p. 61). Heidegger’s concept of Dasein or ‘being-there’ is therefore an understanding of the nature of ‘being’ as ‘always and already in a world’; hence the language of “within-ness” characteristic of Heidegger’s thinking.

A further difference in their scholarship is elucidated by the philosopher, Charles Guignon, when he writes, “Heidegger shifts the focus of phenomenology from the intuitions in the consciousness of a subject to what emerges into presence in a temporal and historical unfolding” (Guignon 2006, p. 545).

It is this aspect of a ‘temporal historical unfolding’ that hovers as a palpable presence ‘being-in’ this research space. It is this quality that draws me into the existential-ontological dimension of participant experience in this study and which alerts me to the significance of my own existential grappling. This is the essence of the hermeneutic perspective.

‘World and worldliness’

Heidegger’s seminal idea of Dasein or ‘being-there’ is inextricably bound up with another of his core concepts, that of ‘World’ and its ontological-existential structure, ‘Worldliness’. The renowned Heidegger scholar, Hubert Dreyfus, articulates the relationship in the following way: “There is the concept of ‘World’ which precedes any individual private person’s world and which has its way of being in ‘Worldliness’’ (Dreyfus 1991, p.88).

In Dreyfus’s reading of Being and Time, the concept of ‘World’ can be used to denote that which is ‘included’ in a world as well as that which refers to ‘involvement’ in a world. Dreyfus writes, “Heidegger lays out the categorical and 24 existential ways in which the term world is used, distinguishing an ‘ontical’ sense (that which relates to entities) from an ontological sense (that which relates to the way of being of those entities) (p. 89).

The notion of ‘being-in-the-world’ as denoting ‘involvement’ in a ‘world’ is the way in which the concept of ‘world’ is used in this study. This usage of ‘world’ finds its relevance and application to human science inquiry in fields such as intercultural and global politics (Dallmayr 2009) as well as to illuminate the ‘world’ of medicine and health itself (Svenaeus 2000a).

‘Ways of being’, as Dreyfus points out, are also ‘everyday practices’ and therefore the idea of ‘world’ in this conception can apply equally to the ways in which ‘either individuals or cultures or institutions exist in a world of shared social practices’ (Dreyfus 1991, p. 14-15).

The ‘ordinary everyday’

Making sense of the world begins in everyday practical living. Heidegger refers to this mode of living as ‘ordinary everydayness’ or ‘average everydayness’. It is from this concrete realm that a horizon of ‘intelligibility’ or the capacity to ‘make sense of’ is constituted. We make sense of our existence in the concrete practices of daily living. Dreyfus, drawing on the work of Pierre Bourdieu (who himself was influenced by philosophers like Heidegger and Merleau-Ponty), points to the ways in which humans ‘embody the gestures and habits of acculturation in the socialisation process’ (Dreyfus 1991, p.17). These are manifest in ‘everyday’ modes of living.

In the concept of ‘the everyday’ we see again a dividing line between Husserl’s phenomenology and Heidegger’s hermeneutic phenomenology. Husserl’s starting point for inquiry, as Glendinning (2007) writes, ‘is a stepping back from the natural attitude’ (p. 52). As Glendinning goes on to explain, and I paraphrase, in Heidegger’s conception Husserl’s ‘natural attitude’ constitutes a notion of ‘prejudice’ which refers to the assumptions, presuppositions or pre-

25 understandings we carry within. For Heidegger, the ‘everyday attitude’ far from requiring ‘bracketing out’ of our experience is the starting point for inquiry.

Thus, Heidegger’s self-interpreting hermeneutics begins its reflexive impulse from within a referential field of everyday living and comprehension, and it is from within this referential field that there exists the possibility for seeing this mode of understanding as but one of the ways in which we can understand.

Disruption

Our everyday mode of existence is also an everyday mode of understanding. Disturbance or ‘disruption’ in the everyday mode of living provides the catalyst for ontological reflexivity. The existential state of disruption is well described by the hermeneutic management scholar, Steven Segal, in his reading of Heideggerian disturbance. Segal writes, “The human being in its “average everyday” lived experience of the world is not, primarily and for the most part, a questioning being. It is only under certain conditions that it becomes a questioning being. For Heidegger, ‘Dasein’ becomes a questioning being when its being is thrown into question” (Segal 2011, p.39).

The basis of Heidegger’s hermeneutics is that one’s ‘being’ is thrown into question through crisis or disruption. This questioning is the ‘dwelling’ in disruption that triggers ontological reflexivity as the state of ‘turning back on’ one’s own mode of existence. ‘Disruption’ is also closely related to the notion of ‘mood’ which in Heidegger’s ‘language’ refers to an existential ‘structure of existence’ rather than a psychological state. In this argument, ‘mood’ arises from an aspect of ‘being-in-the-world’ which Heidegger calls “throwness”. By this Heidegger means it is part of the human condition to be ‘thrown into’ situations which demand a response. As Heidegger explains in Being and Time (1962), “A mood makes manifest ‘how one is, and how one is faring’. In this ‘how one is’, having a mood brings ‘Being’ to its ‘there’” (p. 173). In lay terms, this denotes ‘state of mind’ as a form of existential attunement to the world and to the manner in which we project our concerns into the world.

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Anxiety, angst and care

It is useful at this point to note the difference between ‘fear’ and ‘angst’ in Heidegger’s thought. While fear refers to ‘fear of something specific’ for example, dementia, ‘angst’ is an all-pervasive anxiety about our ‘being-in-the- world’ and ‘our own potentiality for being’ (Harman 2007, p.70)10.

‘Angst’ as described in Heidegger’s Being and Time is a state of ontological dread. In this kind of anxiety we often don’t know what to do for it refers to the anxiety of choosing how we are to respond. We experience this anxiety or feeling of dread precisely because in Heidegger’s notion of Dasein, ‘Being’ ‘dwells in a set of concerns’ from which there is no escape (Harman 2007, p. 69). This existential state is particularly heightened in the experience of illness and ageing, whereby death and dying, existence itself, is confronted.

This leads to the significance of Heidegger’s notion of ‘Care’ (translated in German as ‘Sorge’) to denote ‘dwelling in a set of concerns’. It describes an ontological state of ‘being’ as a central tenet of Heidegger’s philosophy of existence as we literally live or ‘dwell’ in a set of concerns. Jonathan Ree, in his discussion of Heidegger’s ontological state of ‘Care’, describes our being pulled in two directions: ‘having care’ in which the past bears down on us, and ‘taking care’ in which we project our possibilities for the future (Ree 1999, p.26).

This notion unfolds as a key element in understanding the type of existential concern in which participants ‘dwell’ in this study as subsequent chapters will show.

The ontological state of Care or Sorge as a structure of Dasein’s existence, namely, that as human beings we ‘dwell in concern’, is not to be confused with the notion of care in its ‘everyday’ meaning denoting acts of caregiving. What this does underscore however, are the dual notions of ‘Care and care’ that thread through this study and which illuminate the meaningful interplay of the ontological and the ‘ontical’ dimensions of inquiry in Heideggerian scholarship.

10 See also Heidegger’s discussion, ‘The Temporality of State-of-Mind’ in Being and Time, 1962, p.389-396 27

Moreover, it is through the ontological condition of ‘dwelling in a set of concerns’ (Care) that we make sense of the tangible acts of caregiving itself.

Authentic and inauthentic ‘being’

Heidegger uses terms such as ‘Idle Talk’, ‘The They’ and ‘Everydayness’ to explain the phenomenon of ‘being’ in the ways we understand, interpret and ‘speak’ the world. For Harman, these are terms which denote ‘looseness, laziness and ambiguity’ where we encounter the world in a public sort of way, “for which no individual can be held responsible” (Harman 2007, p. 34).

The widespread perception in the public domain linking increased dementia prevalence in Indigenous populations to alcohol consumption - when the research shows Alzheimer’s disease and vascular dementia as the two most common causes of dementia for Indigenous and non-Indigenous elderly populations alike11 – is an example of this sort of thinking.

In Heidegger’s Being and Time (1962) he explains this phenomenon whereby the ‘subject’ is talked about as the ‘already known’ (p. 210-214). This ‘idle talk’ about ‘the they’ is for Heidegger an expression of ‘inauthentic being’, in the sense that, it conveys a particular way of ‘being-in-the-world’. By that Heidegger means that we operate in the public discourse and don’t question this. It points to the kind of ‘public speak’ Jonathan Ree describes as happening when ‘we do not ‘own’ ourselves – when we overlook the peculiarity of our existence as interpreters of the world” (Ree 1999, p. 21).

For existential scholars of race such as, Lewis Gordon (2000), this phenomenon is described as “Bad Faith” – a point to which I will return later in the thesis when addressing ‘public speak’ as a form of ‘existential othering’.

While we never truly escape this ‘public world’ of human experiencing – indeed it is argued we inherit it – scholars of Heidegger, amongst others, Dreyfus,

11 See for example, Smith, Flicker, Lautenschlager et al 2008; Radford, Mack, Draper et al 2014; Op cit. 28

Harman and Ree point to the potential in Heidegger’s concept of ‘resoluteness’ for rising above this ‘public’ state of experiencing the world.

The potential for this to happen occurs when a crisis disrupts our ‘everyday’ way of existence. As a result of this disruption we are thrown into a questioning of the meaning of our ‘being’. Dreyfus (1991) expresses it in this way, ‘instead of fleeing anxiety we hold onto it’ (p, 315). These disruptions provide the opportunity to move from a state of ‘inauthentic being’ to one of ‘authenticity’ as one of the possibilities for taking action.

However, coming face to face with ‘inauthentic being’ requires the kind of profound anxiety which exposes to Dasein’s ‘being’ that there is nothing left in ‘average everydayness’ on which to rely. This state of existential disruption to ‘everyday’ modes of living is described in Heidegger’s lexicon as the existential condition of ‘estrangement’ where one finds oneself displaced from familiar ways of ‘being-in-the-world’. In a colloquial turn of phrase Heidegger’s concept of ‘estrangement’ is characterised by the state of being ‘outside of one’s comfort zone’ or being ‘not at home’.

Presence, absence and ‘unconcealment’

Scholars of Heidegger are generally in agreement that his idea of ‘Being is not presence’ is his greatest contribution to Western thought (Harman 2007, p.1). This is because of the historical and temporal nature that ‘Being’ is. In Heidegger’s conception it is only humans who are ‘questioning beings’ and who, writes Harman, ‘are immersed in the play of absence and presence that unfolds in the course of history’ (2007, p. 92).

The notion of ‘presence’ with its corollary absence is significant in the conversation between hermeneutic phenomenology and science, the latter referring to inquiry in the scientific mode. It points to both the ‘what’ that is deemed worthy of study and the ‘how’ of the inquiry. The former refers to matters which Glendinning (2007) argues science doesn’t address (p, 89) while the latter refers to the manner of ‘unconcealment’ itself (Harman 2007).

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In the field of medicine these concepts have been explored by the existential phenomenologist, Frederik Svenaeus, to distinguish between ‘the theories and investigations of the empirical science of disease’ and ‘the lived experience of illness itself’ (Svenaeus 2006, p. 413).

In the world of the ‘everyday’ the notion of ‘unconcealment’ finds its methodological expression in a mode of reasoning emanating from Heidegger’s concept of “world disclosure” – a concept to which I will return as an explicit focus for my analytical frame in Chapter Five.

In simple terms, the concept of ‘world disclosure’ denotes the process by which life’s occurrences ‘show up’ in their meaningfulness, which is also the manner in which they become visible to me as a researcher. This process of ‘making sense’ or ‘intelligibility’ in Heidegger’s language is the way a given phenomenon ‘shows itself in itself’ (Dreyfus, quoting Heidegger 1991, p.30). Still, as Dreyfus notes, “… if phenomenology is letting something show itself, then what phenomenology deals with is something that is not already obvious” (p.32). Hence, integral to the process described variously as ‘disclosure’, ‘unveiling’ or ‘unconcealment’ in Heideggerian thought is the interplay between that which is ‘visible’ to us and that which is ‘liminal’ in human experiencing.

The manner in which entities become visible include the manner in which language and culture are constitutive of ‘Being’ in the sense outlined by Heidegger and subsequently by Gadamer in his seminal work, Truth and Method (2004). In Heidegger’s Poetry, Language, Thought (1971), what is displayed is the manner in which language whether in the form of art, poetry or prose is ‘disclosive’ of ‘being’.

The philosopher, Charles Taylor, argues that this way of ‘disclosing’ or ‘unveiling’ a ‘world’ can be contrasted with the type of epistemological argument found in much of scientific discourse (Taylor 1995). The hallmark of ‘unconcealment’ is the way in which a phenomenon discloses itself as it emerges from its ‘ordinary everyday’ understanding, which, as Dreyfus reminds us, ‘is the background upon which all our understanding takes place’ (Dreyfus, 1991, p.32).

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Being-in-question: a stance for research

Heidegger’s ontology draws from the depths of human experiencing and from that which cannot easily be seen. It is best described from within the immersion of a specific situation, bringing to light that which is not readily apparent (Harman 2007). ‘Being-there’, as a concept is therefore descriptive of a quality of immersion as opposed to an account of the nature of ‘entities’ as such. This immersion in the situation is a ‘dwelling in a set of concerns’. At this point, I return to the quotation which opens this chapter, namely that ‘we stand in some relation to the meaning of being in the question’. This asking about ‘being’, as Jonathan Ree points out, has ‘a different quality to the entities we ask about in everyday life’ as it arises from the ontological state of Care (1999, p. 7). That is, our immersion in a set of concerns.

It is this aspect of Heidegger’s scholarship that I take forward in this thesis. In this stance, what begins to show itself is the underlying ‘disruption’ that emerges from the questioning of ‘being-in’ the research. In reaching for the meaning and experience of caregivers in an Aboriginal world of ageing and dementia, I ‘unveil’ the horizon of my own meaningful experience in grappling towards an ‘authentic’ and attuned mode of research practice.

Part B. ‘Being-in question’ in the practice of research

Introduction

This section of the chapter is an account of how ‘being-in question’ in the question itself changes the shape of the research inquiry. Having outlined core philosophical tenets of Heidegger’s hermeneutic phenomenology, I now turn to hermeneutic phenomenology as a mode of research practice. I work with the ‘complementary’ elements Todres and Wheeler (2001) refer to in their framework of existential hermeneutic phenomenology. This means that I ‘ground’ the phenomenological study of the ‘dementia’ experience in the ‘lived world’ of Aboriginal caregivers; that I ‘position’ myself in relation to that of participants in articulating how I arrive at my interpretive understanding; and

31 thirdly, that I draw from my situated embodiment in a ‘language of existential experiencing’ to disclose the world of the research relation (p. 2). These elements will be illustrated further in chapters Four and Five of the thesis. For now the scope of my discussion covers the period where I transition from an envisaged descriptive phenomenological inquiry of dementia perception and experience to a realisation that the phenomenology I am engaged in is closest to an existential hermeneutic practice.

I first describe this transition in Chapter One of the thesis when I show how the study’s research questions evolve from the point of my initial engagement with the study. Now I pay attention to the ‘how’ of this transition which underlies the questioning of the research question itself. This questioning can only come about in the context of the experience of conducting the research. Doing the research enables me to question my assumptions about the research and opens up new ways of ‘being-in’ the research.

Entering into research: from expectation to dwelling in disorientation

My journal notes are a rich source of ‘data’. By this I mean the ‘data’ of my ‘lived experience’ as a ‘researcher-in-the-world’ as I engage with the ‘data’ of participant experience. These notes disclose the existential moods that accompany my research process and which through their disruptive presence alert me to ‘something’ that needs to be brought into visibility.

From a Heideggerian standpoint, they disclose the manner in which my research becomes ‘intelligible’ to me. This process of sense-making emerges from a combination of the ‘everyday meanings’ I bring with me into the study and how these meanings ‘show up’ what is significant for the inquiry. I draw from my ‘disruption’ as a researcher in my world and pay close attention to the mood of ‘estrangement’ that creates a distance between me and my habitual practice.

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‘Nothing to something’

In a diary entry marked ‘a dark night’ I grapple with the embodied state of ‘not knowing’ that characterises the emergent nature of the research I am immersed in. I am struggling to pin down the phenomenon I am researching. Since I begin with a ‘lived experience’ conception of ‘dementia’ and not dementia as a medical diagnosis or theoretical construct the boundaries are fluid and permeable. Is the phenomenon I am researching dementia? Is it ageing? Is it caregiving? Is it ‘research’ itself? In this state of ‘not knowing’ I envy the firm boundaries of scientific hypotheses and the directional stance of scientific questioning which communicate clarity, authority and direction.

The mood of my anxiety escalates when I have ‘nothing’ concrete to show for the months of ‘research time’ that go by. I am yet to grasp what the philosopher, Simon Glendinning (2007) means when he explains, ‘it is the mood of anxiety itself that discloses the something of the nothing’ (p.87-90).

Further, he articulates the gist of the phenomenological enterprise in Heideggerian hermeneutics when he writes, “The problem, then, is whether we can make sense of ‘encountering’ such a not-a-thing at all given that we cannot even coherently frame the question by reference to the intellect and its logic” (Glendinning 2007, p. 88).

The ‘not-a-thing’ by contrast evolves through the condition of coming to awareness. Reframed very simply, the ‘Nothing’ becomes ‘Something’ by disclosing itself as being what it is.

What is the research story?

I begin this study with the understanding that it is about the ‘lived experience’ of dementia for caregivers of an older Aboriginal person. My initial research question arises as a ‘knowledge gap’ identified in a literature review that precedes the start of this PhD inquiry (Arkles, Jackson Pulver, Robertson et al. 2010). The Review finds that the perception and understanding of dementia differs across communities and circumstances, including that it may not be 33 viewed as a medical condition. There is little information on the dementia experience itself in Aboriginal families to draw on. The Study’s research question therefore arises in response to this knowledge gap. At a pragmatic level, its usefulness is aimed at producing the kind of information relevant to the needs of Indigenous families seeking dementia information and services.

At a paradigmatic level however, the question arises from a belief in the capacity of research to ‘find’ tangible truths that can be translated into policy and service outcomes. I am periodically asked, ‘So what are you finding out about Indigenous people and dementia?’ I struggle to find a sound bite for this perfunctory question about the dementia experience. It is a complex often hidden and long story and its significance is only becoming apparent as my engagement in the research deepens. While I set out initially ‘looking for dementia’, what I become aware of is a sense of its concealed presence.

What is the phenomenon being researched?

The phenomenon that I am seeking to understand is ‘dementia in an Aboriginal world’. Potential study participants for my PhD, that is, family carers of frail older people or those in cognitive decline include many families I am told who are ‘not willing to address a diagnosis of dementia’. This suggests the concept of denial, a perspective that has contextual meaning in the referential world of the medical diagnosis but which cannot be assumed in the referential world of a ‘lived experience’.

In attempting to peel away the medical view of ‘dementia’ and ‘denial’, I wonder what it is that the family see. To gain a feel for the issues, I accompany a community health worker on a visit to an older lady in one of the study’s sites. In her family, there is disagreement as to whether she has dementia and this is causing friction and distress. The older lady lives alone but she is surrounded by neighbours who keep an eye out for her.

When we arrive, the kettle is on the boil and we join her and a neighbour for tea. The older lady moves around her space slowly but carefully. There is some

34 confusion with her pills, but after a time the community worker is reassured that her medication regimen is under control. We settle down with our tea and are regaled with stories of this lady’s engagement in her community. She is animated in the telling and her commitment and enjoyment of community life is deeply sustaining. I went ‘looking for dementia’ and come away with the feel of something quite different. It is altogether elusive.

What is ‘culture’?

While getting to know the communities I will be conducting my research in, I work on the pilot study for the main population survey, the study in which my PhD is embedded as a sub-study. The pilot study questionnaire is long and detailed, comprised mainly of closed ended questions and Likert scales (an approach for scaling responses in a question). I interview a mature aged woman who has volunteered her time for the pilot study.

In one section, questions are asked about ‘Aboriginal languages spoken’ and ‘identification with tribal grouping’ as markers of cultural affiliation. These are standardized questions drawn from commonly used Indigenous population surveys. The lady being interviewed answers that she is not identified with any ‘tribal, traditional or clan group’ nor ‘speaks any Aboriginal language’. I tick the boxes and prepare to move on. After a pause she speaks. Growing up on the mission, we weren’t allowed any of this. You would be punished for speaking your language. Then there is silence.

I feel the presence of a distinctive historical narrative emerging into the interview space. It hits me that this lady is describing a profoundly cultural experience. That of growing up on a mission within a colonial regime of forced assimilation and coercion. I wonder how this standardised marker of ‘connection to culture’ will be interpreted by readers unfamiliar with this localised community history.

It brings to mind the argument of the social researcher, Mishler (1986), of the importance of context for research understanding without which survey

35 responses suffer a ‘disconnect’ from their socio-cultural grounds of meaning. Similarly, it underscores the argument of the medical anthropologist, James Waldram, when he writes, ‘instead of assuming a notion of ‘culture’ (or the lack thereof) the contextualisation of culture invites a questioning of what the culture in question is’ (Waldram 1986, p.72). With this understanding ‘culture’ is neither an unfailing ‘variable’ for the purposes of epidemiological explanation nor does it portray a fixed point for Indigenous identity. How then do we understand ‘culture’ in the complexity of our research?

What is a subject?

Two years into my doctorate, I am struggling to obtain the number of participants initially envisaged for the study. I am in contact with numerous potential participants and am working through the requisite community networks. People are in crisis. Families are in crisis. There are strokes, hospitalisations, daily coping with the needs of frail elders. There are those looking after relatives with ‘difficult behaviours’ who await diagnosis or respite care. There are those who do not wish to get involved. There are others who express a reluctance to talk about painful issues. There are those who’ve agreed and subsequently can’t be contacted. There are caregivers who themselves are unwell. Others work long days and come home to multiple family responsibilities at night. In some cases, the elder person has now passed.

As I wait for more respondents, I start to pause, slow down and close inwards. I recognise a certain parallel mood described to me by a respondent as her world contracted to accommodate her mother’s illness. I struggle against this feeling of ‘being-slow’ in my body. I’m a researcher; I need to stay on track. What must I do to proceed?

Still, I am deeply immersed in this experiential space. The community is starting to take on a tangible living presence. My telephone exchanges with potential respondents are both revealing and concealing of a complex reality. I wonder in what situations it is appropriate to approach families to take part in research?

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Where might the problem for families be located? Am I prepared for the depth and pain of what I am about to hear?

In my endeavours to gain participants I am thrown off guard by the presence of family crises and a palpable sense of collective pain that permeates ‘being-in’ this research space. Many families are carrying a heavy load of multiple caring responsibilities. In the community itself there occur deaths with disturbing frequency, such that, it is inconceivable to continue with ‘business as usual’. In light of such circumstances, scheduled focus groups and community meetings must be cancelled.

The notion of a research ‘subject’ is starting to look, in and of itself, like a limited and incomplete research entity. The ‘subject’ I am now seeing is expanding into a palpable complex research space.

What do I ‘see’ in my research with Indigenous people?

On one of my first visits into a local Indigenous community I am introduced to a prominent figure as a researcher. As we shake hands, his voice is playful but his first words to me are: You’re not an anthropologist are you? They think they know us and can write about us. But we know better. We tell them whatever they want to hear! They don’t actually know us.

This encounter experienced early on in my candidature and discomforting as it is, is instructive in my learning as a researcher. It has presented me with the opportunity to ‘dig deep’ into my embodied discomfort as a ‘white’ researcher undertaking research in an Indigenous space. The notion of research as a ‘dirty word’ (Smith 1999) leaves me ill at ease and lingers despite my encounters in rewarding research-community collaborations.

Further, it points to the contested spaces of research amidst the history and politics of representation and identity in a post-colonial research environment and I too am implicated, not least because my own research trajectory has benefitted from access to the experience of others who do not hold the same privilege in the research space. 37

What also comes to mind with the words of this community figure is the idea that we are ‘perspectives made aware of ourselves as seen from another’s standpoint in the world’ (Gordon 1995, p.19). This is a condition of ‘self- consciousness’ which disrupts my habitual researcher space and an issue to which I return in Chapter Three.

From a Heideggerian perspective my ‘being’ is thrown into question. Who am I and how should I proceed in this research? Without explicitly realising it, I am entering into what I shall describe, paraphrasing Heidegger, as the ‘context of concern’ in the research relation itself.

Entering in: from disorientation to reframing

In the encounters I describe above, I enter into a series of calibrated existential states. I am ‘in disruption’; ‘in confusion’; ‘in uncertainty’; ‘in disorientation’, ‘in bewilderment’ and ‘in discomfort’. I am losing hold of the coherence and purpose of my original research question. In fact, far from the purposeful demeanour of the research ‘scientist’, I am ‘dwelling’ in a state of concern. In the language of Heidegger, I am in an existential state of anxiety, an uncertainty in which the foundations of my practice have been shaken.

Paradoxically for Heidegger, anxiety is also a state of ‘care’, in that it is in this state that we ‘dwell in a set of concerns’. It matters to me that things are not what they seem. In this stance, the world appears complex, contradictory and capable of many meanings. How does this sit with the ‘average everyday’ stance of being a researcher?

While I embark on this PhD contemplating the perceptions and experiences of Indigenous family dealing with the ‘dementia’ phenomenon, it is my own researcher experience and perception that I am grappling with. In the presuppositions contained in the study’s original research question I enter into the existential moods of disorientation. This disrupts the way I exist as a researcher-in-the-world.

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In the disruption of stepping outside of my habitual research practice, I allow for other learnings to be revealed. I refocus my research questioning to accommodate the complexities of ‘being-in-research’ in this discomforting space. As in the experience of the ethnomusicologist, Stevens Zur, ‘letting go of an idea of what data is’ leads to a more profound understanding of the importance of history and context for my work (Stevens Zur 2007).

This leads me towards the core business of my research endeavour which is how I disclose the ‘world’ of dementia for Aboriginal family caregivers, and in so doing, disclose my own world as a researcher in the world. I have reached the point of being able to define the research question.

The generative space of ‘being-in’ question

The rejuvenating potential for ‘dwelling’ in the unsettled spaces of anxiety, uncertainty and disorientation lie in what the crisis theorist and contemporary philosopher, Nikolas Kompridis, refers to as the ‘meaning enlarging’ or ‘possibility disclosing’ practices that arise from these ‘spaces of indeterminacy’ (Kompridis 2006; Kompridis 2011). In Kompridis’s notion of ‘reflective disclosure’ – which draws from Heidegger’s notion of ‘world disclosure’ - ‘a world’ is re-disclosed in and through my own experiencing (Kompridis 2006, p.31). The salience of this idea for the practice of research is, as Kompridis argues, ‘whether the effect of this re-disclosure decentres or refocuses a prior understanding of the world’ (2006, p. 35).

Without realising it I am already in the hermeneutic circle of interpretive understanding before the idea of ‘being-in’ the ‘hermeneutic circle’ emerges as an explicit concept in my scholarship. This mode of reflexivity is characterised by my engagement with ‘disruption’ and triggers the stance of ontological and epistemological questioning as I seek greater attunement for the specific context of my research.

Moreover, it is from this existential experiencing of the world that my engagement with theoretical ideas and conceptual frameworks embodies a

39 living resonance. In this regard, I am drawn to a quotation used by the post- colonial scholar, Homi Bhabha, to frame his book, The Location of Culture (1994), in which he draws from Heidegger’s writings in Poetry, Language, Thought (1971). In his book he quotes Heidegger when he writes, “A Boundary is not that at which something stops but as the Greeks recognised the boundary is that from which something begins its presencing” (Bhabha 1994, p. 1).

In this quotation I find a way to move forward in the dilemma that confronts this research. The ‘disorientation’ I recount in the anecdotes arising from my journal entries is characterised by Homi Bhabha as ‘a disturbance of direction’ which comes from moving away from ‘established conceptual categories’ and turning instead to an ‘articulation of the spaces between’ (p. 2). This inspires me to immerse myself deeper into the field, to enter into encounters in a spirit of perspectival and open-hearted engagement and a willingness to be decentred.

Part C. Ontological reflexivity in ‘lived experience’ research: significance and ambiguities

Introduction

The idea that ‘we stand in some relation to the meaning of ‘being’ in the question’ encapsulates the hermeneutic in Heidegger’s phenomenology. The question of ‘who are we when we ask it’ and ‘where is the question coming from’ (Ree 1999, p. 8) points up the matter of researcher reflexivity in the conduct of interpretive research. While reflexivity has become the sine qua non of qualitative research (Finlay and Gough 2003), it is an all embracing term and does not in itself discern the ‘what’ to which the term reflexivity refers (Walsh 2003, p. 51), nor the ‘how’ of reflexivity for contemporary research practice (Pillow 2003).

Reflexivity now encompasses a multiplicity of disciplinary fields, interpretive paradigms and emancipatory purposes as prolific editions of the SAGE handbooks of qualitative research by researchers, Denzin, Lincoln and colleagues, attest to. 40

The reflexivity researcher, Linda Finlay (2002), identifies the broad sweep of reflexivity in a ‘story of turns and shifts’ between and across disciplinary fields, research paradigms and historical eras. She identifies the ‘early anthropological and ethnographic realist tales’ where she writes, ‘researchers aimed to prove their scientific credentials’ (p. 210). From ‘realist tales’ to ‘confessional tales’, Finlay writes of researchers embracing a ‘methodological self-consciousness’ at the core of their practice (p. 210). Much of this informed the autobiographical turn in ethnographic and anthropological writing resulting in the specialised areas of auto-ethnography itself, in which the ethnographic lens in turned towards the ethnographic experience of the researcher (Tomasselli 2007).

This turn she writes then shifts into ‘the critical reflection of the research audit’ (p. 210), whereby the aim of methodological practice is the ‘transparency and accountability’ of the research. There are shifts into ‘radical relativism’ as in the myriad ways research is shown to be ‘socially constructed’ (p. 211). These are attempts Finlay writes to ‘erode the researcher’s privileged position’ and to allow for other voices to be heard (p. 211). This segues well into the disrupting of researcher power and power relations and, in the words of Laurel Richardson whom she quotes, ‘unmasking the political and ideological agenda’s hidden in researcher’s writing’ (p. 211).

There is a robust literature ‘speaking back’ to dominant research methodologies in areas of critical and Indigenous research and in attempts to establish, what Lester-Irabinna Rigney calls, ‘Indigenous Australian intellectual sovereignty’ (Denzin, Lincoln & Smith 2008; Rigney 2001).

With Clifford Geertz’s autobiographical reflections on the changing twists and turns in the methodological moments spanning his own anthropological career, he identifies the changing trajectory for the zeitgeist of meaning making itself: ‘through the linguistic turn, the hermeneutical turn, the cognitive revolution, constructivism, semantics and narrative and more latterly, neural mapping amongst others’ (Geertz 2001, p.16).

The reflexivity that characterizes my own research is grounded in an ‘ontological reflexivity’ which seeks to identify the nature of the ‘disruption’ that captures my

41 experience of ‘being-in-the-research’. It is a reflexivity which is ‘foundational to the practice of hermeneutic and phenomenological research’ (Walsh 2003, p 51).

Between the universal and the historical

The locus of the ‘discomfort’ that characterises my research is contained in the underlying question of this inquiry, namely, what does [my] ‘being’ mean for [this] inquiry? The question when read without parentheses can be seen as my attempt to grasp the universal form of existence at the core of the experience of ‘being a researcher’ in a ‘world’ of ageing and dementia for Aboriginal families - the phenomenon I inquire about. However, when the question is looked at with parentheses, in other words, framed as what my being means for this inquiry, what is now foregrounded is my existential, embodiment in a situated context of inquiry.

A tension now exists between the universal existential structure of existence – fundamental to the notion of ‘being’ in Heidegger – and the existential embodiment that arises from an individual’s ‘situated’ or historical experience. This opens up a fracture between the view of existence as the domain of individual human beings in their ‘situated’ embodiment and the view of existence as belonging to a universal existential structure of ‘being’ in being human (Asher Moore in, Wrathall and Dreyfus 2006, p.1).

The philosopher Graeme Nicholson addresses the notion of a ‘divided self’ between ‘being’ and beings in Heidegger’s ‘ontological language’ as exposing an ambiguity for the practice of ontological reflexivity (Nicholson 1996). In this ontological language Nicholson writes, ‘we are both aware of our Self and aware of the Being of our self, hence a divided self-awareness’ (p. 362). Nicholson demonstrates how this ontological language shows ‘awareness of a collective category of being’ which he argues, ‘takes us beyond the merely individualised experience which allows us to grasp something of the quality of ‘Being’ in being a [something]’ (p. 364).

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This idea is encapsulated in Max Van Manen’s (1990) landmark book Researching Lived Experience in the striving toward ‘maintaining a strong and oriented relation’ as a way of inhabiting the true meaning of what it is to be a given professional in a world with others.

Ontological reflexivity in the context of this study is asking what it means ‘to be’ a ‘researcher-in-the-world’ reaching others ‘in-their-world’. It arises from the Heideggerian idea that ‘we stand in some relation to the meaning of ‘Being’ in the question’ which, as I have stated earlier in this chapter, entails asking ‘who are we when we ask it’ and ‘where is the question coming from’ (Ree 1999, p.8).

Yet, in seeking to answer these questions I come face to face with an ambiguity, one that is disclosed in the phenomenon of ‘experience’ itself. This dilemma is succinctly explained by Hubert Dreyfus in his reading of Heidegger’s Being and Time when he outlines the parameters of Heidegger’s ontological language: “[Heidegger] does not discuss what it means to be a human being in specific cultures or historical periods, but rather attempts by describing everyday life to lay out for us the general, cross-cultural, transhistorical structures of our self- interpreting way of being and how these structures account for all modes of intelligibility” (Dreyfus 1993, p. 35).

In a similar vein, Heidegger’s view that we exist in an ‘inescapable enmeshment with others in-the-world’ is descriptive of a universal and ‘fundamental structure of existence’ (Schatzki 2005, p. 233). We are, according to Heidegger, already in a relationship with others (‘being-with’) as part of the existential structure of ‘being-in-the-world’.

Still, the tension between existence as a universal category of ‘being’ and existence as a ‘situated’ and historical embodiment emerges in the ‘common ground’ of ‘lived experience’ itself (Wrathall and Dreyfus 2006, p.5). The ‘divided self’ in Heidegger’s ontology comes to expression in real embodied existence.

In this distinction between the universal and the historical is situated a polemical conversation between two of phenomenology’s seminal philosophical thinkers. As Wrathall and Dreyfus (2006) scope out in their introduction to 43 phenomenology and existentialism, in Heidegger’s scholarship we see the elevation of the ‘existential structure of Dasein or human being’ while in Sartre’s scholarship we see the elevation of ‘a human setting and a human subjectivity’(p.1-2). In probing this philosophical nexus I come face to face with a ‘disruption’ for my research. It arises in the ‘context of concern’ for this study which is how I, as researcher, reach different ‘worlds’ in a post-colonial research space.

The philosopher of existence, Lewis Ricardo Gordon - who draws from Sartre’s scholarship, and in particular, from such pioneers of Africana philosophies of existence as Frantz Fanon and W.E.B Du Bois - interrogates phenomenology, race, and the colonial setting as a site for philosophical disruption (Gordon 2000). While Gordon’s prolific scholarship extends from a struggle over universal philosophical ideas (2000), to a struggle for existential and political emancipation (1995), his notions of ‘being’, ‘non-being’ and ‘becoming’ are significant concepts in this study’s questioning.

Being, non-being and becoming

In probing an essential human experiencing of ‘being’, in other words, our very ‘human-ness’ as ontological beings, we bump up against real embodied existence. The elemental human urge to make sense of our existence recognises that in the realm of ‘lived experience’- that is day to day ‘concrete’ existence - our experience is lived differently. This existential reality has formed the basis for the corpus of feminist and race-based scholarship challenging the hegemony of Western based philosophical thinking (Murphy 2008; Manganyi 1973).

In Gordon’s book, Existentia Africana (2000), he provides a compelling argument ‘de-centering’ Western based ontological thinking. His argument is essentially that much of Western philosophy has failed to scrutinise its own normative understanding of existence. This criticism underscores the relational aspects of identity awareness and formation. For in Gordon’s argument, which I paraphrase here, we experience ourselves as ‘white’ or ‘black’ or ‘male’ or ‘female’ in relation to one another. The constructions of our identity are given 44 meaning and enlivened in relation to something else. In Gordon’s argument, ontology’s fundamental concern with the essence of what it means to be a human being, must, ‘if it is to have any basis in reality, arise from within its own existential situated-ness’.

Gordon considers the ontological through the exigencies of the existential when he argues that it is the impact of social reality and its meaning that is ontological not the mere fact that different races exist12. In the context of a history of colonization, conquest and dispossession, Gordon’s argument is that ‘Being’ has its corollary in ‘non-Being’.

This ontological binary seems to capture the premise and certainly the spirit underlying Australia’s doctrine of Terra Nullius, whereby the relationship of Australia’s Indigenous inhabitants to the land was rendered invisible to ‘white’ settlers and their colonial rulers. In having no ‘legal’ legitimacy on the land Australia was deemed a ‘Terra Nullius’, a ‘land belonging to no-one’. Indigenous Australians became ‘non-beings’ in the colonial relation.

In a similar vein, more recent experiences of Australia’s ‘Stolen Generations’, the forced removal of young children from their families, their Country, their traditions and even their names removed their very identity13. In this relation of coercion the existential state of ‘non-being’ is illuminated. In the face of Indigenous experience Gordon’s argument is a cogent one for interrogating universal notions of ‘being’.

Probing the existential-ontological substrate of identity formation through the relational lens of colonialism buttresses the argument of the Australian historian, Bain Atwood, that the question of ‘how Aboriginal people came to be Aboriginal’ should [itself] be the subject of [historical] inquiry …focusing not on Aboriginal peoples’ ‘being’ but on their ‘becoming’ (Atwood 1994, p. 126).

12 See for example, Gordon and Alcoff (2003). A Philosophical Account of Africana Studies: An Interview with Lewis Gordon. Nepantla: Views from South, 4 (1), p165-189. Duke University Press 13 I refer here to the Report, Bringing them home: National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families (1997). Commonwealth of Australia; https://www.humanrights.gov.au/sites/default/files/content/pdf/social_justice/bringing_the m_home_report.pdf; Accessed 15 August 2014

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Indeed, this ‘becoming’ is an evolving phenomenon for Indigenous identity and culture in Australia’s post-colonial landscape (Muecke 2004) as indeed is its corollary in the identity of “whiteness”.

The philosophical and historical notions of ‘being’, ‘non-being’ and ‘becoming’ are compelling ideas to work with in post-colonial inquiry. They require I think critically about the relevance of Heideggerian ontological reflexivity for practice in a contemporary world.

The philosopher, Nikolas Kompridis, takes up this challenge in his book, Critique and Disclosure (2006) when he proclaims that we need to see ourselves not only as ‘beings in time’ but as ‘beings in relation to our time’ (Kompridis 2006, p.5).

This perspective is a bridge which allows me to traverse the significance of Heidegger’s ontological reflexivity and the necessity of Sartre and Gordon’s existential historical ‘situatedness’ in thinking about how the relationships of the phenomenological world have been ruptured by the experience of colonization.

The times in which we live

The philosopher, Michael Theunissen, proclaims “the Other” to be the seminal idea of twentieth century scholarship (Theunissen 1884, p.1). This is attributed to ‘the age of modernity with its dislocations and disruptions’. As Fred Dallmayr writes in his introduction to Theunissen’s book, “The post-Cartesian turn to “otherness” is nourished by the broader mutations and dislocations of our age: dislocations manifest in the confrontation between Western and revitalized non-Western cultures on a global scale, and also in the clash between competing social classes and experiential life-worlds” (Dallmayr, in Theunissen 1984, p. x).

The encounter with ‘otherness’ in the historical sense of an encounter with ‘an Other’ is the existential condition that defines the research relation in a post- colonial environment. This frames the existential disruption of working in this complex space. In Heidegger’s universal structure of ‘being’, we are already in a 46 relationship with others in the idea of ‘co-being’. The question then arises as to what kind of research relationship is possible in the space where historically or ‘ontically’ (to use Heidegger’s term) we live in a colonised relationship with the other. This is the question I will address in Chapter Three.

Summary and conclusion of the chapter

In this chapter I have used the language of Heidegger’s philosophical framing to think about ‘being’ as a temporal historicised presence. Further to this, I have considered what my ‘being’ means for this inquiry grounding me in the situated exigencies of ‘being in relation to my time’. This is a necessary existential ‘hermeneutic detour’ as colonization has ruptured the social and ontological relationships of meaning in research’s phenomenological ‘worlds’.

To conclude this chapter, in Heidegger’s hermeneutic phenomenology the potential for deep learning takes place from within the ‘ordinary everydayness’ of my experience; in the ‘moods’ and existential disruptions that threaten to break through my familiar ways of ‘being-a-researcher’; and in the journey of estrangement that precedes the possibility for enlarging the scope of my researcher understanding and practice.

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Chapter Three

Methodology and research as a ‘lived relation’: self, other, and ‘between’

“Boundaries are the places where things begin”14

Early on in this research process I attend an Indigenous research methodologies master class. Central to this Workshop is the notion of an ‘Indigenous standpoint’ emanating from Indigenous ‘ways of being’ (ontology), Indigenous ‘ways of knowing’ (epistemology), and Indigenous ‘ways of doing’ (axiology). Equally, the gaze is turned on non-Indigenous ways of ‘being’, ‘knowing’ and ‘doing’ within a perspective of methodology ‘as a political, social and cultural product’. The question arises whether research into Indigenous experience is legitimate outside of a “Whiteness Studies” framework. With the gaze turned on my own methodology, I struggle to pin down the dimensions of my standpoint – ‘Being, Knowing, Doing’. ‘Being-in-question’ as a stance for research does not sit well with binary positions. Nor can I name the discomfort I am feeling. So I ask myself what are the methodological options open to me for this study?

Introduction

Integral to the practice as a researcher in my ‘world’ is the question of how I reach others in their ‘world’. This question is both literal and figurative but it is the former, that is, the methods of research itself that dominate discussion of research methodology in much of public health and medicine. Reaching others in a figurative sense is emblematic of a deeper complexity pointing to the contested environment of methodology itself.

14 Homi Bhabha (1994, p.1). The Location of Culture. Routledge: London, New York 48

Underlying this complexity is a concern with how, as researchers, one enters into what Linda Finlay describes as ‘the shared inter-subjective space of the research encounter’ (Finlay 2006, p. 1). Furthermore, the rupture caused by colonization and its aftermath is entangled in this research’s inter-subjective space. As the Hawaiian academic, Manulani Mayer writes in the preface to Karen Martin’s (2008) book on Aboriginal regulation of outsiders, “in a contemporary Indigenous-non-Indigenous research space, methodology itself is placed under scrutiny for its part in the colonizing-decolonizing enterprise”.

As a non-Indigenous researcher in a study concerning Indigenous people, I am called upon to address the intersubjective nature of my research methodology in a wider field of historical, social and political relations. This brings to awareness the ontological-existential relation underpinning the human experience of the research encounter that Gordon (1995) refers to as ‘perspectives of embodiment’ and which underpin the dynamic of who we are in relation to each other.

This question has to be considered at two levels. The first is in the representational space between non-Indigenous researchers as one and the notion of Indigenous community as a whole. The second is in the context of a concrete, situated research encounter. As a researcher one comes face to face with the uniqueness of individual participants and their localised circumstances as well as with the collective history that speaks through their experience (Crotty 1998). The individual story is deeply entangled in the historical narrative (Mankowski and Rappaport 2000). Further, in ‘shared history’ there is the entanglement of the researcher’s narrative (my narrative) with those with whom research is conducted (Jones and Jenkins 2008).

This chapter considers methodology as a ‘lived’ relation of research in the context of ‘tensions of difference’ (Segal 1998). The focus in this chapter is on the space between non-Indigenous researchers and the Indigenous community as a whole. Other dimensions of the research encounter will unfold in the remaining chapters of the thesis.

Part A of this chapter considers what it means to encounter an(other) in a highly charged research space. It outlines differing accounts of intersubjectivity which

49 in the phenomenological tradition encompass diverse and competing perspectives. Part B considers intersubjectivity in light of the legacy and implications of colonization for contemporary research and practice in public health and medicine. Part C of the chapter considers the ‘lived relation’ of dementia as a contested area itself. Here intersubjectivity is indicated by the differing interpretive lenses used to research, practice and write ‘dementia’.

I begin this process in the previous chapter by presenting anecdotes that reveal ‘tensions of difference’ in my experience of conducting this research in an Aboriginal ‘world’ of ageing and dementia. This begins a process of illuminating the intersubjective spaces between ‘self’, ‘other’, and ‘world’ in this study’s phenomenological frame (Zahavi 2001).

Now in this chapter I address these ‘tensions of difference’ as the challenge of methodology itself. In other words by addressing the manner in which I approach the research question: ‘what is the experience and meaning of dementia for carers in an Indigenous ‘world’’? In order to reach this question however, there is an underlying concern that drives this discussion forward, namely, what does it mean to encounter an(other) in a highly charged research space?

Part A. Encountering an(other) in a post-colonial research space

Introduction

The disruption into which I venture as a non-Indigenous researcher amongst Indigenous people has an inescapable and shadowy existential element. For what is it that I ‘see’ in my research with Indigenous Australians? As Lewis Gordon (2000) observes, are we talking about ‘being black’ or ‘the meaning of being black’? Similarly, how does the ‘fact’ of ‘being white’ play out in the meanings of ‘being white’?

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In populations of mixed race ancestry, such as in this study, issues of identity and identification are often contested both from within and without Indigenous community. We behold each other as ‘perspectives of embodiment’ (Gordon 1995). Thus issues of identity and representation are infused into the meaning and practice of any research endeavour.

I come face to face with this complexity in the self-questioning of a potential participant carer of an older person with dementia who put to me that she didn’t know if she was eligible for the study because in her words, ‘I don’t really identify with the Indigenous community as such’15. This ‘self-questioning’ arises in the complicated space of identity politics in which Indigeneity is prodded and probed from all sides of the historical and discursive imagination, a subject which has been written about perceptively by the health social scientist, Yin Paradies (2006a).

One also has to ask as Gordon (2000) does what it means at the ontological level to be an ‘Other’, where ‘Other’ is characterised as ‘a problem to be solved’16. The problematizing of Indigenous people in Australia and indeed in other fourth world populations17 has been writ large within the historical and research record such that, within the context of Australia’s colonial history there is an irony to being a ‘priority target population’. It is a designation fought for on equity grounds and contested in existential, cultural and representational dimensions.

With regard to the latter, there is a robust scholarship both internationally and in Australia, in literature, popular culture and the arts (Cowlishaw 2009; Grossman eds., 2003; Keen eds., 1988); in anthropology, philosophy and social science (Moreton-Robinson eds., 2004; Muecke 2004; Rose 2004; Denzin, Lincoln & Smith eds., 2008); and percolating into the medical domain (Hunter 1993; Anderson 2003), stirred by a backlash to the arrogant certainties and

15 Eligibility for the study was defined by the age (60 years and over) and Indigenous status of the older person who qualified for the ‘parent study’, see chapter one ‘a sub-study within a study’ 16 I refer the reader here to chapter 4, “What Does it Mean to be a Problem?” in Lewis Gordon’s book, Existentia Africana, (2000) 17 The term ‘Fourth World’ is used to denote the situation of Indigenous populations living in ‘settler’ societies such as, Australia, Canada, New Zealand and the United States. See for example, Richard B. Lee (2006). “Twenty-first century Indigenism”, Anthropological Theory 6 (4), pp. 455-479 51 damaging excesses of European colonialism and its links to public health, medicine and research.

The discomfort of this positioning of ‘problematic Other’ for research participants arises from being a member of a population group, which as Gordon (1995; 2000), observes of the ‘Black’ existential experience (a proxy for all forms of ‘Othering’), has become mired in the public imagination in a dialectic between ‘hyper visibility’ and ‘invisibility’. In the popular press, this is evidenced by the preponderance of ‘bad news’ stories about Indigenous people rendering their humanity invisible.

The corollary of this is the invisibility of the dominant group (read ‘whiteness’) or dominant paradigm (read Western bio-medical) whose ‘structured normativity’ in mainstream society masks a significant legacy of power and privilege (Boucher, Carey and Ellinghaus, ed. 2007). This is a position of multifarious ‘discomfort’ for non-Indigenous researchers navigating our own history and intention through the ruptures and obstacles of the colonial encounter.

Into this equation are the emergent and multiple identities of contemporary Indigenous identification (Bhabha 1994, Paradies 2006a, Singh 2011; Radhakrishnan 1993) as well as the multiple identities and methodological lenses of researchers in increasing fields of inter-disciplinary research. This is the complex, shifting and oftentimes troubling space that must be acknowledged and worked with in the context of Indigenous-non-Indigenous relations.

Intersubjectivity in the phenomenological tradition

In the major paradigms of positivist, interpretive and critical scholarship intersubjectivity presents as differing epistemological ‘cultures of inquiry’

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(Higgs and Cherry 2009, p. 9), which are presented as historically located, if continuing, methodological ‘moments’ in qualitative research (p. 7)18.

In the phenomenological tradition of scholarship the notion of intersubjectivity is at its core and encompasses approaches which cut across the major interpretive paradigms of inquiry (Thompson 2005). Thompson sets out the relationship of phenomenology to intersubjectivity clearly when he writes, “in the context of phenomenology, intersubjectivity is inseparable from the concept of experience and is applicable when endeavouring to determine self’s relation to others, and the realisation between self’s experience of others as subjects of experiences that are not directly given to self” (Thompson 2005, p. 1).

This expresses a concern with laying claim to ‘knowing’ the world, which is also a concern with the limits and possibilities of ‘knowing’ itself. Further, in the context of colonisation’s legacy there is the added disruption of whether laying claim to ‘knowing’ in the context of Indigenous experience is a ‘fantasy of entitlement’ for non-Indigenous researchers (Jones & Jenkins 2008, 481).

The phenomenological tradition deals with intersubjective questions in diverse and competing ways. Four different approaches into intersubjectivity in phenomenology’s tradition are outlined in Dan Zahavi’s (2001) overview. These include the ‘concrete face to face encounter’; the ‘alterity’ of ‘selfhood and otherness’; the ‘apriori relation between subject and world’; and the ‘confrontation with radical otherness’ (p.165).

These differing perspectives span the philosophical and theoretical approaches of a number of phenomenology’s key thinkers, including Husserl, Heidegger, Sartre, Ricoeur and Levinas. Given the dense and polemical philosophical arguments contained in the scholarship of each of these thinkers, I restrict my brief discussion here to their central idea on intersubjectivity and their approach towards ‘the Other’.

The prominent feature these thinkers have in common in the intersubjective world of the twentieth century is their grappling with the ‘Self-Other’ question

18 For a concise summary of these ‘moments’ I refer the reader to Table 1.1 ‘The eight moments in qualitative research (drawn from Denzin and Lincoln, eds.2005), Higgs and Cherry, in Writing Qualitative Research on Practice eds., Higgs, Horsfall and Grace, 2009, Op cit. 53 in light of the Cartesian legacy (Theunissen 1984; Glendinning 2007). Fred Dallmayr, in the introduction to Theunissen’s book, The Other: Studies in the Social Ontology of Husserl, Heidegger, Sartre and Buber (1984), draws attention to the ways in which the ‘I-Other’ relation is examined ‘between Husserl’s transcendental phenomenology and Buber’s dialogical framework’ (Dallmayr 1984, p. xii). The argument put forward here is that Husserl’s I-Other relation is a ‘mediated’ one in which “the Self is a Self with no awareness that it exists for the Other” (p. xiv). The salience of this feature of Husserlian intersubjectivity from the standpoint of experience based research is that “the I of the Other is my own I” (p. xv).

At the other end of the ‘Self-Other’ spectrum, the ‘I-Other’ relation of Martin Buber is transformed in the dialogical tradition into an ‘I-Thou’ relation. Here, as Dallmayr writes, ‘self-discovery occurs in the passage through otherness in interaction with a Thou that cannot be reduced to sameness or objectification’ (Dallmayr, in Theunissen 1984, p. x).

This latter aspect accords with that of Emmanuel Levinas’s standpoint that we can ‘neither know nor possess’ the Other in our face to face dialogical encounter with them (Glendinning 2007, p. 158); and moreover, ‘that what we encounter as the face of the Other ‘exceeds’ or ‘overflows’ any thought or idea of the Other that I might form’ (p.159). This antidote to traditional empiricism as an idea has much cogency for the phenomenological tradition that sees in human experiencing something ineffable and beyond human grasp. Still, the concern with Levinas ‘as a thinker of the Other’ that the philosopher, Peter Kemp, draws attention to is that ‘Levinas refuses reciprocity in his depiction of the ethical relationship of responsibility between selfhood and otherness’ (Kemp 1996, p. 46-7). This leads Kemp in the direction of Ricoeur, and towards ‘the between’ space of the ‘I-Other’ relation, which he argues is also the theoretical space ‘between Heidegger and Levinas’ as a thinker of ‘alterity’ (Kemp 1996)19.

By contrast to Levinas’s idea of the human ‘grounded in solitude and separateness’ (Glendinning 2007, p. 149), we find the notion of an a priori

19 This is the title of Kemp’s essay, “Ricoeur between Heidegger and Levinas: original affirmation between ontological attestation and ethical injunction” in Paul Ricoeur (1996). The Hermeneutics of Action, Ed. Richard Kearney; SAGE Publications. 54

‘sociality’ in Heidegger’s scholarship (Schatzki 2005). Intersubjectivity here is expressed in Heidegger’s notion of Dasein’s ‘co-being’ as part of the existential structure of ‘being-in-the-world’. It is a concept of existential ‘sociality’ unrelated to the actual dynamics of relationships between individuals themselves (Dallmayr 1980, p. 221; Schatzki 2005). As Zahavi writes, Heidegger’s account of the concrete encounter is that it ‘unfolds or articulates what was already there from the very start a priori’ (p. 156).

The self’s transformation through ‘the passage of Otherness’ characteristic of divergent existential approaches opens up divergent meanings of existential ‘estrangement’. On the one hand, Dallmayr points to ‘the existential path to self- discovery through estrangement’; on the other, there is the estrangement of ‘alienation viewed as oppression’ (Dallmayr, in Theunissen 1984, p. x).

This is the counterpoint of difference between Heidegger and Sartre’s ‘social ontology’. As Zahavi (2001) writes, “Sartre takes issue with Heidegger’s attempt to understand ‘being-with’ as an essential, intrinsic, and a priori determination of Dasein, rather than as a contingent and factual feature that only shows up in and through concrete encounters with others” (p. 157). Sartre’s intersubjectivity, like that of Emanuel Levinas, is the state of ‘radical otherness’ that in Heidegger’s scholarship is conceptualised as ‘a between’ space in the relationship of ‘Self’ to ‘World’.

Ricoeur straddles the legitimacy of both approaches in his embracing of Heidegger’s concept of ‘being-in-the-world’ as a valid account of human existence, and, of the importance of bringing to the fore instances of historical alterity as a focal point for hermeneutic concern. This echoes Kemp’s argument that, “the concept of world which Ricoeur integrated is that of the surroundings of and correlate to existence, not that of objectivity opposed to subjectivity” (Kemp1996, p. 44-5).

Despite the differences in standpoint highlighted in this brief discussion the concept of ‘otherness’ in its various manifestations is fundamental to contemporary scholarship, such that, debates regarding epistemology are

55 essentially ontological-existential debates about what it means to exist in a world with others.

The boundaries of ‘self and other’

These differing accounts of intersubjectivity are attempts to grapple with the gaze of the ‘Other’ and the related concept of alterity in the context of post- colonial research. The existential condition of alterity threads through this study in the following ways: One is to characterise alterity as the ‘state or quality of being other’20. Two is to convey alterity in its political meaning of ‘subalternity’ which refers to those in society who due to history’s circumstances are located in positions of economic, political and social marginalization in relation to those within the dominant establishment. Three is to denote differences between experiential or ‘cultural worlds’ as horizons of divergent meaningful experience.

These are the ‘tensions of difference’ that thread through this research and present the methodological concerns I grapple with in negotiating the study’s contested areas of intersubjectivity. In the context of a collective embodied experience of Australian history, what does it mean to conceptualise the research encounter as Finlay (2006) describes, as a ‘shared inter-subjective space’? Further, it asks questions about where its boundary might be considered (Fine 1998).

In the context of alterity’s meaning as subalternity, a robust tradition of critical research has contributed to theoretical debates concerning what has widely come to be known as the ‘politics of the hyphen’ in post-colonial relations (Denzin, Lincoln & Smith 2008). These studies are also proxies for interrogating locations of power, privilege and their converse in marginalization and powerlessness; for defining social norms and their converse in dysfunction; and for delineating relationships of dominance and subordination. In the emancipatory context of critical race theory and Indigenous methodologies there are notions of ‘speaking back’ (Smith 1999; Moreton-Robinson 2000); of

20 I find this a useful definition. See, www.merriam-webster.com.dictionary/alterity. Accessed 29 May 2014 56

‘revisioning’ anticolonial relationships (Canella & Manuelito 2008); and of investigating ‘Aboriginal agency’ (Martin 2008).

Similarly, at the other end of the colonial binary there is the field known as ‘Whiteness Studies’ to interrogate its dominant relation. Studies in this genre grew out of critical race theory as an imperative of turning the gaze back on the constructions of white superiority, white privilege, and white power. It has since traversed the historical formations of localised ‘white’ identities (Carey, Boucher & Ellinghaus 2007); the particularities of ‘white’ existence (Brewster 2005); the fear of the ‘outsider’ on the underside of the normative community boundary (Hage 2003); and its ‘intersections’ with a robust field of indigenous and minority group studies (Russo, Brewster & Jensen 2011) .

Yet, as Colishaw writes of the inverted gaze, “‘whiteness studies’ does more than invite reflexivity and shift the ethnographic gaze to a different object. It also expands the way we think about race, where race is now recognised as referring to a relationship between people with different kinds of heritage, both physical and cultural” (Cowlishaw 2005), an approach illuminating her searing account of social relationships in suburban Sydney in The City’s Outback (Cowlishaw 2009).

Indeed, the Australian Critical Race and Whiteness Studies Association in calling for papers to their 2014 Conference, ‘reinstate the importance of the study of race’, but they observe that the field is now in danger of ‘losing Indigenous sovereignty in the service of recuperating white virtue’21.

This point is worth taking seriously in pondering the notion of Indigenous sovereignty in the health arena and the trajectory of the health profession in addressing Indigenous agency and jurisdictional control. Undeniably, the success of Aboriginal community controlled health services in the primary health care landscape for Aboriginal and Torres Strait Islander people is testimony to the importance of a model of health care that goes further than just medical care itself (Panaretto, Wenitong, Button & Ring 2014).

21 I refer here to their website: http://www.acrawsa.org.au/conference/ Date accessed: 16 August 2014

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Then again, in these and more mainstream health environments, perhaps it also suggests that turning the gaze of reflexivity onto ‘whiteness’ goes too far into ‘white guilt and stigma’, as Kowal’s (2012) research suggests, and not far enough into probing the existential vulnerabilities of the condition of ‘racial’ estrangement itself, a subject to which I return in the following section of this chapter.

The researchers, Jones and Jenkins (2008) write that, “to rethink collaboration between indigene and colonizer is both to desire it and to ask troubling questions about it” (p.471). They approach the thorny issue of their research collaboration from both sides of the ‘Indigene-Colonizer hyphen’. Their arguments are pertinent to this discussion in as much as they concern the ‘lived relation’ of difference across a colonial divide.

The arguments Jones and Jenkins raise centre on the nature of the research relationship as a historical one that ‘reaches back into a shared past’ (Jones & Jenkins 2008, p. 473). This idea of ‘history’s shared space as a defining moment for the research relationship’ arises from a different context of concern from the ‘shared space’ that Finlay (2006) refers to in ‘the shared inter-relational space of the research encounter’.

This underscores the different meanings of ‘otherness’ which traverse the phenomenological landscape and which are described earlier. The ‘shared past’ which defines ‘alterity’ in Jones and Jenkins scholarship, is for Finlay the embodied relational space of empathy as a holding environment for the intersubjective encounter. Here the ‘other’ of the humanist tradition of phenomenology is brought to the fore, while in the ‘shared histories’ of colonisation’s “otherness” a relational atmosphere of ‘suspicion’ is accentuated. Although Gadamer argues that in the process of reaching for understanding ‘every form of hermeneutics is a form of overcoming an awareness of suspicion’ (Gadamer 1984, p.313), in the shared history of the colonial encounter understanding is never enough, bringing to mind Paul Ricoeur’s ‘hermeneutic detour’ out of the circle of understanding in a movement backwards and forwards between understanding and explanation (Kearney Ed. 1996).

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Returning to Jones and Jenkins, the salient point they make is that the very terms which delineate the collaborative partnership between Indigene and colonizer develop out of the relationships of Settler colonialism and therefore, ‘discursively produce the other’ (Jones & Jenkins 2008, p. 473). The ‘discursive production’ of racial identity is also examined by the Australian historian and activist, Marcia Langton (Langton 2003). Similarly, the Australian historian of medicine, Warwick Anderson (2007), shows how the history and legacy of Settler colonialism and its impacts reverberate powerfully into the contemporary health space.

Jones and Jenkins’ argument is that despite the ‘softening’ or ‘reducing’ of the ‘hyphen’ or boundary in cross cultural collaborations of ‘mutual interest’ the ‘hyphen’ is also a question of ‘political, practical and identity survival as Indigenous peoples and therefore not negotiable’ (2008, p. 475). The ‘boundary’ of this ‘hyphenated’ space between Indigenous and non-Indigenous peoples cannot therefore be erased. However, as Homi Bhabha has written (and which I quote earlier), a ‘boundary does not have to be the place where something stops but a place where to begin’.

In Jones and Jenkins (2008) argument the value of the ‘hyphenated relationship’ is as ‘a site of productive methodological work’ which compels me to interrogate which aspects of my practice are rendered visible or invisible, foregrounded or backgrounded, and what are the learnings that serve the relationships surrounding my research in these encounters of difference.

The lived relation of research

The tensions that thread through this study’s inquiry manifest themselves as tensions of universalism and particularism; individuality and collectivism; ‘being’ and belonging; certainty and ‘not knowing’; visibility and invisibility; and diversity and sameness. They are the tensive spaces of ‘being-in-research’ and ‘being-in-dementia’ respectively.

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These competing existential states give rise to questions for this inquiry. What can be said to be distinctive about the experience of ‘dementia’ in an Indigenous context as opposed to in any other ‘lived’ context? What is the ‘story’ I and participants want to tell about dementia; and whose ‘voice’ is foregrounded?

Framed in an existential hermeneutic context, I might pose these questions in the following way: how do we ‘existentialise’22 ourselves as feeling, thinking, reflecting human beings in the relational experience of our research practice? How do we illuminate what lies ‘between us’ when we ‘write about the other’? How do we create the ontological and epistemological conditions for shifting atmospheres of research distrust and suspicion?

These questions point towards the complexities and tensions inherent in the racialized health encounter in light of Australia’s colonial legacy, an inheritance that continues to reverberate into contemporary practice.

Part B. The colonial legacy and contemporary public health & research practice

Introduction

The encounter between researchers and participants in an Indigenous-non- Indigenous research space brings to mind Lewis Gordon’s challenging question: can a ‘racial formation be studied as a human formation?’ (Gordon 2000, p.71). This question holds much relevance for me, both in relation to the country of my birth, South Africa, and in the context of my work in Australia in light of its own history of colonisation and racism. As the medical historian, Warwick Anderson argues, “the term ‘Indigenous’ marks the contrast between original inhabitants and colonisers with the status emerging out of political subordination under settler colonialism” (Anderson 2007, p.144). This ‘situated’ history – as in the case of other ‘colonialisms’ - is the context for Gordon’s question which

22 I borrow this term from a colleague, Dr Steven Segal, as a useful way of thinking about applying the learnings of existential practice 60 unsettles the notion of a universal humanism underlying phenomenology’s project.

The colonial legacy

Historians of health and medicine demonstrate through the historical record and cogent argument the entwined relationship between medicine, public health and colonisation in Australia. Public health, in particular, writes Bashford ‘was practiced as a mode of colonization with health measures synonymous with control over the lives of colonial subordinates’ (Bashford 2000, p.248). Other studies trace the ill-health of Indigenous populations to specific colonial policies and practices as in Judith Raftery’s (2006) study.

Colonisation and its aftermath has been widely implicated in the socio- economic profile, health risks and disparities between Indigenous populations and their non-Indigenous counterparts in Australia and other ‘fourth world’ countries (Trovato 2001; Pollard 2005; Morrissey 2003; Jackson Pulver, Haswell, Ring et al, 2010).

The burden of chronic illness facing Indigenous populations today now includes an emerging literature on dementia prevalence pointing to risk factors across the lifespan associated with a greater chance for Indigenous Australians of developing dementia in later life compared with the rest of the population (Smith, Flicker, Lautenschlager et al, 2008; Radford, Mack, Draper et al, 2014).

Studies addressing specific government policies and practices, such as those of forcibly removing children from their families and ancestral homes, show a positive correlation with poorer social and emotional health outcomes for Indigenous compared with non-Indigenous young people (Silburn, Zubrick, Lawrence et al, 2006). Judy Atkinson’s ground breaking study addressing the ways in which historical trauma reverberates across the generations demonstrates its origins in the dislocations of colonial dispossession and related traumas (Atkinson 2002). More generally, the deleterious impacts of racism on Indigenous health and wellbeing in studies conducted by Paradies and

61 colleagues, show racism as a significant health issue in its own right (Paradies, Harris and Anderson 2008; Paradies 2006b).

The experience of colonisation and its aftermath is the overarching point of commonality for Indigenous Australians and their counterparts in comparable fourth world countries. Indeed, as Anderson has written in his comparative histories of Indigenous health, “the effort to identify some special Indigenous essence or type ultimately is futile since the status emerges out of political subordination under settler colonialism” (Anderson 2007, p.144).

The appropriation of ‘the Aboriginal body’ in the service of racist discourse in particular, lingers long in the collective memory of Indigenous people. In informal conversation during the course of this study, some members of the older generation talked about the way in which Aboriginal people ‘in the old days’ used to have their brains measured, a reference to ‘scientific racism’ as a pseudo-scientific justification for white supremacy and racist worldviews.

The consequences of this legacy for contemporary research and practice are multi-fold. It has contributed to a widespread distrust of bio-science, bio- medicine and a general wariness of ‘white’ researchers involved in Indigenous health research which persists today. This is illustrated also in the ways in which Indigenous health research is written about in the public domain (Thomas 2004; Walter 2010). It enmeshes colonialism, paternalism and Aboriginal health and plays out in a number of areas of recent and current research contestation.

Dodson and Williamson (1999), for example, raise questions about the morality of the Human Genome Diversity Project. Kowal and Anderson (2012) write about the controversies and challenges of conducting genetic research in relation to Indigenous health.

The contemporary research landscape

The leitmotif of bureaucratic control and the scepticism of western medicine’s capacity to improve the lives of Indigenous people continue into the current era. 62

This creates a space of tension which, argue Kowal and Paradies (2010), public health and medical practitioners must negotiate. They point to a number of tensions impacting the research relationship as ‘a post-colonial predicament’. These include the tension between ‘universality and particularity’ (Kowal & Paradies 2005, p. 1355); the tension between ‘cultural difference and statistical equality’ (Kowal & Paradies 2010, p. 600); and the tensions of ‘marginalized versus normative identities’ (2010, p. 599). In a related vein, Jordan, Bulloch and Buchanan (2010) point to the contention in differing frameworks for promoting Indigenous wellbeing ‘between statistical equality and cultural difference’.

In these spaces of tension and contestation what shows up as significant is on the one hand, the frustration and powerlessness of health practitioners when confronted with an overwhelming morbidity in Aboriginal communities; and on the other, the resistance and disconnect by some Aboriginal communities to what they perceive as attempts to impose solutions on their lifestyle and problems. To this can be added limitations of localised health service bureaucracies to resolve these complex dynamics. This is compellingly described in the autobiographical account of a Melbourne doctor’s experience in remote Aboriginal communities (Goldenberg 2009); and powerfully portrayed in the documentary, “Crossing The Line”23, in which white middle class medical students confront their own powerlessness and ethical crises in the face of overwhelming dilemmas and ambiguities of remote area practice.

The tensions between health workers and their ‘patients’ are particularly fraught where specific populations are caught up in institutional jurisdictions. In Cox’s study, bureaucratic control translates into ‘moral programs laid down by the health system regarding how people should live their lives’ (Cox 2007, p. 86). For people caught up in this nexus between ‘care, regulation and control’, resistance is a counterpoint to powerlessness.

These studies shine a light on historical practices and rhetorical discourses where Aboriginal people are problematized in the public domain as sick and dysfunctional, rather than a discourse turning back on the genesis of how things

23 http://www.roninfilms.com.au/feature/783/crossing-line.html 63 came to be the way they are. This, writes Maggie Walter, is the ‘discursive power’ of data itself where, “by virtue of the racialized terrain in which data are conceived, collected, analysed and interpreted the data are politicized in ways mostly invisible to their producers and users” (Walter 2010, p. 45).

The consequences of the colonial legacy for the health of Indigenous Australians is most poignantly described in its insidious impact on ‘Aboriginal bodies and mental health’ by Warwick Anderson as, “the blighted intimacy of colonial power” (Anderson 2007, p. 151). This ‘blighted intimacy’ evocatively describes and elucidates the troubled relational space of contemporary Indigenous non- Indigenous health research and practice.

The discomforting space of public health research

In negotiating the tensions described above the discussion points towards a discomforting space for the conduct of public health research and participation. Kowal and Paradies (2005) describe this as ‘the impossible task’ facing public health practitioners in the following terms when they write, “[they] must inhabit only the rhetorical space of public health that can be made to speak the language of self-determination. Their impossible task is to relieve the ill-health of Indigenous people without acting upon them; changing them without declaring that change is required” (Kowal and Paradies 2005, p.1355).

This discomforting space is also powerfully described by Gruen and Yee of their own experience as health practitioners in a remote Aboriginal community (Gruen and Yee 2005). Kowal and Paradies argue that we ‘lack the conceptual tools needed to unpack the postcolonial nexus of fourth-world health’ (2005, p.1347). Certainly, attempts to-date to address cultural training for health worker practice in Indigenous settings support the argument that the ‘effectiveness of indigenous cultural training programmes in Australia is poor’ (Downing, Kowal & Paradies 2011, p.247).

The ‘enduring dilemmas of Indigenous health’ that Kowal and Paradies refer to, require solutions that as Gruen and Yee (2005) write, ‘don’t necessarily fit in the

64 normative medical tool box’ (p.540). These ‘tools’ include aspects such as community advocacy around health and social issues, approaches to health research and practice that favour collaborative models of engagement (Baum, MacDougall and Smith 2006), and increased support and resourcing for self- determining health service models (Panaretto, Wenitong, Button & Ring 2014).

These approaches have indeed gained ground in many areas of Indigenous health as ways of negotiating the kinds of complexities being discussed in this chapter. They include challenges to ‘Western ways of knowing’ (Kendall, Sunderland, Barnett et al, 2011), as well as, embracing methodological processes for engaging and promoting participatory learning and well-being through the transformational capacity of artistic forms of expression (Jersky, Callaghan, Zwi et al, 2013).

Yet there are intangible elements at work in these tensive spaces that are not automatically erased by virtue of participatory action research or other collaborative models. Further, tensions and complexities are persistent features in many mainstream health environments. Writing for a mainstream Western medical audience, the medical practitioner, Mary Belfrage (2007), makes the case that Indigenous ‘patients’ need to feel ‘at home’ and that health care has ‘value, relevance and connection’ in the fabric of their lives and can acknowledge ‘the history that has so powerfully impacted their agency and choices’. Her perspective is framed in the language and imperatives of “culturally safe” health care practice, still we arrive back at both Kowal and Paradies’ assertion that ‘we lack the conceptual tools for dealing with the complexities of fourth world health’; as well as, a challenging phenomenological question which is what is required of non-Indigenous practitioners for Indigenous patients to feel ‘at home’?.

This question is reminiscent of Fredrik Svenaeus’ (2000) writings on the ‘worlds’ of medicine and patients respectively. It denotes the different horizons of referential meaning inherent in these ‘worlds’ and the consequent importance of the encounter between practitioner and patient both for its cross-cultural value and in the sense of creating a dialogical ‘home’ (Svenaeus 2006).

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The disconcertments of encountering in these ‘worlds’ highlight a very Heideggerian dilemma for the ‘context of concern’ in which public health, and research more generally, takes place. Firstly, the studies I refer to above, notably Gruen and Yee, Kowal and Paradies, and Goldenberg illustrate not only the ‘ontic discomfort’ that is a feature of working this space but the confrontation with ‘otherness’ that pervades the existential-ontological atmosphere in which this work happens.

This leads into a second disconcertment, and that is, whether this kind of ‘ontic discomfort’ can be resolved with recourse to epistemological approaches to cultural diversity training. Before turning to this latter question, I will turn to the ‘ontic discomfort’ that became the inadvertent ‘subject’ of a workshop I attended during the course of this study addressing the management of behavioural challenges in dementia in mainstream service delivery in the context of Indigenous clients.

A workshop

The methodological concerns of intersubjectivity play out in the most ‘ordinary’ of ways in the world of research and professional practice. I give an account of a workshop which brings to the fore many of the philosophical, theoretical and methodological tensions that weave through the discussion both in this chapter and in Chapter Two. The experience of this workshop is instructive in opening up how one can use ‘the ordinary everyday’ to generate the difficult questions that interrupt habitual practice.

The theme of the workshop was to elicit from mainstream service providers and professionals what experiences arose for them in their work with clients from an Aboriginal and Torres Strait Islander background. The intention of the workshop was to raise the profile of need for Indigenous families dealing with the dementia phenomenon and to encourage and support mainstream services to reach out to this constituency.

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The most striking aspect of the ensuing discussion was the almost total invisibility of Australians from this background in these services. Only one service provider in the room was aware of having had an Aboriginal client.

It is not my intention here to speculate as to why this might be so, although there is a robust literature which points to the many reasons why Aboriginal clients and families may be under accessing or not accessing particular types of services; as well as why they may not be aware which of their clients come from an Aboriginal and Torres Strait Islander background (Taylor and Biddle 2008; Australian Institute of Health and Welfare 2006; Hayman, White & Spurling 2009).

Rather, for the purposes of discussing the ‘tensions of difference’ being addressed in this chapter, I focus on the themes of discomfort and concealment which illuminate what shows up as significant in the discussion.

Participants were overwhelmingly ‘not aware’ if their clients were of Aboriginal or Torres Strait Islander background with some stating they ‘did not go out of their way to look for clients from this background’.

‘Whoever comes through the door gets treated exactly the same’.

Some expressed anxiety about working with Aboriginal families because ‘they were afraid they would do or say something culturally inappropriate’.

Others said ‘they didn’t go out of their way to look for Aboriginal clients but were very open to working with these clients’.

The service provider who had worked with an Aboriginal client said ‘they had a great relationship and had made good headway’ but that ‘there were some tensions with the client’s family whose version of events was different from that of the client’s’.

The responses to this discussion illuminate aspects of both Heidegger and Gordon’s scholarship that I write about earlier in the chapter. These include the notion that we go about our business as a ‘concealed presence’ unless something occurs that ‘interrupts that practice’; the tensions of ‘sameness’ and ‘difference’

67 that point to debates about ‘erasing or asserting the ‘hyphenated relationship’ between Indigenous and non-Indigenous’; and, whether these responses are to be viewed more broadly, as the anxiety of Heideggerian ‘ontic discomfort’ or, as the complicity of Sartre and Gordon’s ‘bad faith’; or perhaps both?

In the complex dynamic of culture, race and ‘lived experience’, “bad faith” as a notion of ‘not admitting what I see, what I do, or where I supposedly stand’ (Gordon 1995, p. 16) is a powerful one. Yet, it also brings to the surface a fundamental obscurity characterizing ‘everyday’ practice which is the hallmark of Heideggerian approaches to existential discomfort.

The strength of this workshop was that it disrupted the complacency of mainstream providers and opened a space of discomfort for a difficult conversation to occur. All agreed that they and their services needed to do more to meet the needs of Aboriginal and Torres Strait Islander families who would increasingly require supportive services to assist them manage the behavioural challenges of dementia.

I would also argue that the Workshop opened a space of vulnerability for participants, normally confident in their practice, to voice the tensions between ‘knowing’ and ‘not knowing’, between familiarity and estrangement, when reflecting on what it might mean for their practice to work with clients from an Aboriginal and Torres Strait Islander background. The limitation of the workshop however, was that it ended leaving the ‘ontic discomfort’ hanging somewhere between ‘cultural awareness’ and ‘business as usual’.

Working the space of ‘discomfort’

The researchers of Indigenous health and society, Kowal and Paradies, work this discomforting space in the diversity training they provide for researchers and practitioners in Indigenous health environments. Both scholars have written elsewhere of the complex and multilayered connections between ‘Indigeneity’ and ‘Whiteness’ and research and practice in post-colonial settings (Kowal 2011; Kowal 2012; Paradies 2006).

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This nexus informs the approach they take to diversity training, an approach they call ‘reflexive antiracism’ (Kowal, Franklin & Paradies 2013). On the one hand, they set out to examine the theoretical and conceptual underpinnings of their interrogation of race; on the other, they employ a fine-grained reflexivity in guiding scholars through the discomforts of racialisation’s course which emerge historically in the colonial encounter and which continue to be shaped and sustained as racialised identities’ over time. Their approach cuts through the simplistic binaries of monolithic racial, cultural and identity categories; of race, culture and identity as sets of fixed attributes; or on the other hand, of approaches seeking to remove the significance of race, culture or identity as significant representational markers in the context of post-colonial realities.

Yet, working with the dynamic of self and other in contexts of difference is no easy matter, particularly in mainstream environments of practice. Letting go of the ways we approach knowledge, our work, and how we think about ourselves and others is not easily transformed through learning from theoretical argument or hypothetical models.

Existential vulnerability is the silent partner that accompanies these learnings. It requires that we not only come face to face with the alterities of difference in the racialized encounters of post-colonial societies but that we confront and face up to the existential condition of unfamiliarity itself and the opportunities this presents for turning the gaze back on habitual modes of practice.

In the next section, I draw from both Kowal, Franklin and Paradies’ (2013) constructivist argument for embracing the concept of ‘reflexive antiracism’ as well as on Segal’s (1998) existential philosophical argument for working with ‘the uncertainties and tensions experienced in the face of what is other and different whether this be race, culture, paradigm or perspective’ (p. 271).

‘Fight’, ‘flight’ and ‘facing up’

In Chapter Two I draw the reader’s attention to the distinction in Heidegger’s thought between ‘fear’ and ‘angst’. To recap, while fear refers to ‘fear of

69 something specific’, angst is an all-pervasive anxiety about our ‘being-in-the- world’ which includes ‘being-with others’ and ‘our own potentiality for being’.

In Kowal and colleagues (2013) discussion of the dangers of ‘essentialism (both of minority identities and ‘white’ racial identities) and negative emotions’ as the two reactive poles they critique in cultural awareness and antiracism theory and praxis they open a space for considering what approaches might lie between. They argue that ‘reflexive antiracism’ is a theoretical, strategic and critical approach for working productively with a range of affective and cognitive reactions including, anxiety, ambivalence and guilt that often arises in contexts of difference.

In Segal’s (1998) existential philosophical approach to working with the uncertainties and tensions of difference he also invokes affective and cognitive reactions to experiences of being threatened. Whereas Kowal and colleagues see the process of racialization and identity formation itself as the key pedagogic insight for dealing with the experience of difference as racial or cultural alterity, Segal sees the pedagogic value in embracing existential uncertainty in order to allow the experience of ‘strangeness’ or unfamiliarity to disrupt habitual ways of seeing and practising.

Segal (1998) draws on Zigmund Bauman’s distinction between ‘enemy and stranger to parallel the distinction between fear and anxiety’ in Heideggerian thought. He writes, “An enemy is someone who accepts the same terms of reference as I do, but who takes an oppositional stance to me; a stranger, on the other hand, is someone who does not share the same horizon of intelligibility” (Segal 1998, p. 272).

Segal’s arguments probe the existential experience of estrangement which if left unattended gives rise to the kind of immobilisation where one does not know how to move forward. In this respect, it is comforting to seek refuge in binary positions whether as confrontation or denial, ‘fight or flight’, ‘good versus bad’, ‘black’ versus ‘white’; themes familiar with the kinds of ‘essentialising’ arguments critiqued by Kowal, Franklin and Paradies (2013).

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In the existential experience of ‘strangeness’ one must confront a number of realities. In the first instance, there is the ‘uncertainty of anxiety’ that arises from the state of ‘being in two minds’, both desiring and resisting change, both being drawn to and being deterred from change (Segal 1998, p. 272).

Further, as Segal points out, “with enemies we focus on them not ourselves; with strangers we are unsettled by their mere presence not any characteristics of them as such” (p. 273). To be ‘unsettled by the presence of the stranger’ is to be in a state of watchfulness.

This echoes the ‘perspectives of embodiment’ that Lewis Gordon (1995) refers to in his existential philosophical interrogations where ‘the human being is a perspective that is aware of itself being seen from another standpoint in the world (p.19). In revealing the location for this discomfort, Segal (1998) writes, “I am constantly aware of my own presence as mediated by the presence of the stranger; I cannot simply do things without being aware of the way I do things”. Further, “In looking at the other looking at us we see our taken-for-granted ways of doing things” (p.274).

The pedagogic usefulness of the existential state of estrangement or anxiety that Segal describes, and which I paraphrase and cite in this section of the chapter, is that in drawing from our involvements in the world we become temporarily detached and alienated; immersed in ‘concern’ with ourselves and the manner in which we are involved in the world. Returning to the language of Heidegger, Segal writes, “in the world of anxiety we come to see ourselves, our involvements in and our own being-in-the-world” (p. 276).

Reflexivity between experience, disruption, theory and practice

It is useful at this point to return to Kowal and colleagues research on cultural diversity and antiracism training in order to pick up on aspects of their findings that show the ‘ineffectiveness’ of much of the traditional approaches to cultural diversity training (Downing, Kowal & Paradies 2011); and the ‘negative

71 responses’ identified in ‘the backlash effects’ of defensiveness, resistance, prejudice and paternalism’ (Kowal, Franklin & Paradies 2013, p. 318).

In Segal’s existential hermeneutic approach, these are framed in the conditions of ‘alienation’, ‘withdrawal’, ‘fear’ and ‘anxiety’ as existential responses to feeling threatened. While Kowal and colleagues draw heavily from ‘critical race theory and social psychology’, Segal existentialises these approaches to ‘dwell’ in the spaces of anxiety and tension which threaten researcher-practitioner identity, self-esteem and professional modes of practice.

There is a final argument that Segal directs our attention to and which resonates for the practice of ontological reflexivity such as I experience in this study. In the process of estrangement or existential ‘withdrawal’ the opportunity for existential learning is revealed as ‘the ways in which we are “paralysed” or feel uneasy in the situation’ (p. 277). Echoing the descriptions of my ‘existential discomfort’ in the anecdotes I recount in Chapter Two, I come to see how ‘the ordinary everyday way of going about my business’ becomes an explicit theme of concern for the study. This is a learning that derives primarily from ‘being-in’ the ‘context of concern’ which is the practice of our research itself and its interplay with theoretical arguments and conceptual frameworks that lead towards refocusing ways of ‘being’, ‘knowing’ and ‘doing’.

To work effectively in this space is to work with the elements of complexity, responsibility, and vulnerability. There is a meeting ground between Heideggerian ‘ontic discomfort’ and the complicity of ‘bad faith’ found in critical race theorising which plays out as Gordon expresses it through ‘the dynamic of visibility and invisibility’ (1995, p. 17).

To conclude this section of the chapter, both Kowal and Paradies and Segal offer ‘conceptual and pedagogic tools’ for working reflexively in the racialized encounters of Indigenous health. Yet, the value of existential hermeneutic approaches for professionals, who have been incubated and trained in contexts unfamiliar with the cultural environments, experiential worlds and historical realities of Aboriginal and Torres Strait Islander Australians, is precisely that it is ‘the stranger who will reveal my way of being knowing and doing to me’. ‘In

72 the face of what is other’, Segal (1998) writes, “in order to complete our work, to become attuned, we need to be existentially there” (p., 276).

In the intersubjective spaces between ‘self’, ‘other’ and ‘world’, the implication of Heidegger’s ontological reflexivity for the ‘lived relation’ of methodology is succinctly expressed by Thompson (2005, p.8) when he writes, “Heidegger begins with our relationships with others and then sets out to investigate how to determine, or reclaim, our relationship with ourselves”. The value of ontological reflexivity in Heideggerian hermeneutics for encounters across cultural and experiential worlds is revealed in this dynamic process.

Part C. Dementia as a ‘lived relation’: self, other and ‘between’

Introduction

This chapter considers a range of broad paradigms and perspectives that characterise the dementia field as a way into thinking about dementia as a social and ontological relation rather than clinical entity. It is a way of thinking about the relational world of dementia where interaction with others in the world calls attention to the intersubjective nature of the dementia experience.

A significant paradigm shift has been occurring in the scholarship around dementia from its predominantly biological focus to one which emphasises relational, humanistic, intersubjective and post-modern dimensions (Hughes, Louw & Sabat eds., 2006; Leibing & Cohen eds., 2006; Blum 2012). Framed differently, this is also a shift in perception from a focus on dementia as a ‘disease’ – an ‘object’ to be studied - to a focus on dementia as an ‘illness’ experienced in the body, in the family, and more broadly, in society and culture (Kleinman 1988; Svenaeus 2000).

Leibing and Cohen (2006), make the following distinction in their usage of the terms ‘senility’ and ‘dementia’. ‘Senility’ is understood as, “the perception of deleterious behavioural change in someone understood to be old with attention

73 to both the biology and the institutional milieu in which such change is marked, measured, researched, and treated” (p.1).

‘Dementia’ by contrast, is understood as, “the modern dominant clinical form by which senility has been articulated” (p. 2). This is a useful distinction because, as Cohen writes in the book’s introduction, “we cannot presume in advance how perception, biology, and milieu are related” (p. 2). The modest literature on dementia in the historical record bears out this observation (Boller & Forbes 1998; Berchtold & Cotman 1998), as does a sizeable cross cultural literature on dementia perception and experience (Olson 1999; Henderson & Traphagan 2005; Traphagan 2002; Henderson 2002).

The importance of a paradigmatic understanding of dementia is to appreciate something of the ‘fit of interconnecting ideas’ about the world that depict the notion of a worldview (De Witt 2010). Denzin and Lincoln (2005) talk about the ‘interpretive framework of beliefs and assumptions’ which derive from an ‘ontological, epistemological and methodological’ approach to thinking and practice (p.22).

A more porous characterisation of paradigm is provided by the Oxford Dictionary of Philosophy as one which is, “historically situated and capable of building upon prior accomplishments, yet vulnerable to the accumulation of stresses and contradictions that cannot easily be resolved within any one particular framework of understanding” (Blackburn 1994, p.266). This suggests that no one paradigm is capable of circumscribing the complexity of the modern phenomenon of dementia no matter what interpretive frame we bring to bear on the experience.

Nevertheless, the importance of a paradigmatic understanding of disease lies in the realm of interpretive significance. As the historian of medicine, Warwick Anderson, writes, “our perceptions of disease … bring into focus the concerns we have about the way we live our lives, our relations to community, environment and cosmos” (Anderson 1999, p.245). From this perspective, all approaches to dementia and disease including its bio-medical and bio-scientific view are indeed cultural phenomenon.

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Further, ‘dementia’ raises questions of existential and ontological significance concerning what it means to be a person and what is the nature of existence in ‘dementia’ itself, for the sufferer, the family and society as a whole (Hughes, Louw and Sabat Eds., 2006; Leibing & Cohen 2006). This leads to metaphysical and ethical questions about the value of life, especially in advanced dementia when, as Kaufman writes, ‘life itself hangs in the balance’ (Kaufman 2006, p. 23).

In the remainder of this discussion, I present three broad scholarly paradigms in the dementia field as intersubjective lenses for viewing dementia as a ‘lived relation’. Each of these paradigms contains an immense scholarship and thus this overview is confined to relational aspects of ‘being-in-dementia’ that resonate for this study. The words of participants are interspersed to illuminate the different ways in which dementia manifests in their experience and my interpretation of that experience.

Dementia as brain disease

The medical definition of ‘dementia’ describes it as, “a set of symptoms caused by many diseases, the most common being, Alzheimer’s disease, vascular dementia, fronto-temporal dementia and dementia with Lewy bodies” (Draper 201, p.1). The paradigm of ‘dementia as brain disease’ sets high value on the importance of diagnosis and early intervention. This is consistent with a belief in the potential of bio-medicine and bio-science to find the causes and cures for the diseases that are part of the dementia syndrome.

There is also a conviction that treatment if begun early enough can slow the progression of the disease and lead to its better management (Whitehouse, Gaines et al 2005; Mackenzie, Bartlett et al. 2006; Draper 2011; Overshott and Burns 2005). There is some evidence linking improved outcomes in some patients with pharmacological and non-pharmacological interventions (Doody, Stevens, Beck et al. 2001), however, current clinical guidelines find the evidence base to be weak for the effectiveness of pharmacologic treatment (Qaseem, Snow, Forciea et al., 2008). 75

At the societal level, dementia is conceptualised as a disease ‘epidemic’ and highlighted through statistics, numerical projections and forecasting (Access Economics 2005, Brookmeyer, Johnson, Ziegler-Graham & Arrighi 2007; Access Economics 2009). There is a language of disaster and foreboding found in government reports and the popular press, whose proponents and critics alike, point to this linguistic and metaphorical characterisation for the purposes of garnering financial and infrastructural support for funding, research and drug treatments (George 2010). Yet, this characterisation belies the discursive power of this language to shape the very way dementia is viewed in society, both as a highly feared anticipatory event, as a ‘social death’, and as an existential image of a living death. These existential images of ‘dementia’ emerge in chapters Four and Five.

Given dementia’s pervasiveness in the phenomenon of global population ageing (Ferri, Prince, Brayne et al 2005; Prince, Bryce, Albanese et al 2013), it is arguably, one of the most evocative and feared of the neurodegenerative disorders - certainly in the Western public imagination. Fernando Vidal (2009) attributes this to the idea of the brain ‘as the location of the modern self’ in industrialized and highly medicalized societies.

Germane to the process of medicalization is the role of expert professionals in the diagnosis and management of dementia (Bond 1992). A number of studies point to several sites of tension in the relational space between medical professionals, the person with dementia, family carers, and amongst family members themselves. These tensions often revolve around the ‘transition points’ in the management of dementia, most notably, around the value, timing and disclosure of a dementia diagnosis, as well as what constitutes appropriate management and care for a family member with dementia.

In the referential world of bio-medicine the early diagnosis of dementia is considered highly advantageous on the grounds that it facilitates the involvement of the person affected in planning for their future and in engaging the support of care services (Draper 2011, p.122). The medical paradigm is governed by the ‘principle of autonomy’ where ethical guidelines support the right of the individual to know what the medical expert knows.

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Yet, it is also the experience of the health professional, who becomes attuned to the complex nuances surrounding each situation of medical disclosure (Fisk, Beattie, Donnelly et al 2007). In a range of situations, experienced practitioners will exercise their judgement and make ethical interpretations that vary with the general principle of the medicalization approach favouring early dementia diagnosis (Draper 2011; Fisk et al 2007).

On the one hand, these interpretive judgements are the mark of practitioners whose years of professionalism involve increasing attunement to the sensitivities of ‘real world’ practice. On the other, they reveal a fault-line in the paradigm of medicalization itself.

In Miller, Glasser and Rubin’s conception, this is the ‘paradox of medicalization’ which occurs between ‘the expert domain of the medical profession’ and the ‘biographical domain of the family’ (1992, p. 136). It points to the tensional ‘between space’ of these two domains in addressing the illness experience.

A further point of tension is identified by Corner and Bond (2006) in the contested space of ‘mild cognitive impairment’ as a diagnostic label. This occurs, they argue, due to differing views about what causes dementia - ‘normal ageing versus disease’ - as well as conflicting views about the effects of such a diagnostic label on sense of self and quality of life (p.,3). Certainly, this also raises questions of whether clinical and diagnostic reasoning is ‘a science or an art’, debates which Waymack (2009) argues, have much to do with the ‘psychological yearning for certainty’ (p.215).

These sites of tension in the relational space of dementia present in this study. In discussion with a study respondent whose parent exhibited mild to moderate dementia, he put to me, why should I cause my mother distress by having them tell her she’s got Alzheimer’s when she knows already that she forgets things. I’m afraid if I expose her to that she could stop going out and enjoying herself, and the chances are she will probably go downhill. In this scenario the primary carer becomes the arbiter of judgement regarding if and when a dementia diagnosis is desirable.

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For another respondent in the study diagnosis showed a tensional space amongst family members. The respondent’s own view on the importance of early diagnosis was at variance from other relatives, also facing dementia in their family, a factor which caused this respondent much distress. It’s a bone of contention in our family, she tells me. They didn’t want to rock the boat; they didn’t want to be seen to be intruding on my auntie’s life, so they kind of forbade me to say anything. But my auntie lived in fear until she knew what was happening.

In Mendelzweig’s research (2009), ‘mild cognitive impairment’ as a diagnostic ‘grey zone’ offers a space for both practitioners, patients and families who wish to delay the point at which distinctions between ‘normal and pathological ageing’ have to be articulated and repercussions considered. This was a well traversed space in the dialogue between myself and a number of respondents in this study, who dwelt in considerable anxiety in anticipation of the day when they would be forced out of the ‘grey zone’ to confront a future for their relative that filled them with dread.

One of the ‘tipping points’ identified in Mendelzweig’s research opens a further fissure in bringing ‘expert knowledge’ into the relational space of the family. Here Mendelzweig explains, ‘the burden on members of the family becomes part of the clinical consideration of the cognitive degeneration phenomena’ (p., 65). This, it is argued, is a point of ‘complicity’ between the expert domain of the professional and the domain of the family to the detriment of the person with dementia in the context of a medicalization paradigm, a point to which I will return when discussing the ‘personhood’ movement.

In the fault line between the ‘biographical domain of the family’ and the ‘domain of the expert professional’, Bond (2006) identifies yet a further tension concerning ‘whose authority and influence define dementia’s meaning in society’. In the case of two of carers in this study we talked about experiences of family decision making concerning advanced care directives that contrasted with those of the medical professional’s judgements. In the referential world of the family’s ‘lived experience’ the significance and meaning of keeping the elder alive through treatment, and of the importance of decisions made through a

78 wide process of family consensus, were at variance with ‘normative’ medical thinking. They were telling us about the seriousness of her situation and alluded to ‘why don’t we let her go’. Dad and I were ready to do this because we didn’t want to see her suffer anymore but other family members said ‘no give her a chance’. It was important that everyone have their say.

In the sociologist, Davis’s (2004), account of the medicalization of dementia new advances in technology give expert professionals ‘the knowledge, power and authority’ to define the norms of living and managing dementia (p., 370). This arises in the context of advances in medical technologies which provide the tools ‘to see the previously unseen’ where in the past ‘senile dementia’ was considered a normal part of ageing. The advent of technologies which no doubt offer an exciting promissory space for knowledge about, and potential treatment of the disease for the future, is also ironically for others from a perspective of a ‘living experience’, an area of ambivalence and contestation in that it demarcates new norms for approaching the management of dementia, particularly in its early stages.

While the bio-medical paradigm rests on a belief in its capacity to deliver a cure for dementia, for families in the grip of the experience there is no cure. This leaves them without a scientific language to describe what they are experiencing. As James Marcum writes, “although biomedicine is responsible for the “miracles” of modern medicine, paradoxically it has also led to a quality- of-care crisis in which many patients feel disenfranchised from the health-care industry” (Marcum 2008, p.392).

This crisis has shifted the very ‘boundaries of philosophical methodologies’ (Marcum 2008) away from the paradigm of bio-medicine itself. The ‘turn to personhood’ has been one of the major critiques of the medicalization of dementia.

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Dementia and personhood

The development of a distinctive movement, namely ‘Personhood’ in the ‘caring sciences’, such as nursing, social work and psychology, shifted the approach to dementia in its questioning of where the problem in dementia lies (Kitwood & Bredin 1992). As a movement for the human sciences, ‘personhood’ has constituted one of the strongest challenges to bio-medicine’s dominance within the dementia management field. As Kitwood and Bredin (1992) note, it has shifted ‘the central focus of attention’ from ‘the brain’ in the dementia conversation to the ‘personhood’ of the dementia sufferer (Kitwood & Bredin 1992, p.270). As Cohen writes it poses the question, “where is the person ‘lost’ within the logic of dementia diagnosis and care?” (Cohen 2006, p.3).

The movement embraces subjectivity through the prism of inter-subjectivity. In other words, the dementia sufferer (re)gains their ‘personhood’ through the solicitousness and care of those around her. Similarly, the subjectivity of the carer’s humanity is located in the intersubjective space of caring, a phenomenon which pervades the condition of ‘concern’ in the relational atmosphere between carers in this study and those they care for.

The founder of the Personhood movement, Tom Kitwood acknowledges his debt to the ethical philosophy of Martin Buber, whose concepts of ‘I-It’ and ‘I-Thou’, as two distinct ways of relating, underpins the critique of ‘the objectifying gaze’24 of much of the history of Western institutional medicine (Kitwood, in Miesen Eds., 1997, p.4). Within the ‘I-thou’ way of relating, Kitwood elevates the concept of ‘relatedness’ as the desired model for both the informal domain of the family and the formal domain of institutional care (Kitwood 1997, p.10-13).

In Lindsay Paul’s existential, phenomenological study of informal caregivers caring for dying parents, ‘relatedness’ is evocatively drawn in the ways her participants demonstrate, what she describes as, ‘the unconditional engagement with the life and concerns of their parent at the end of life’ (Paul 2002, p. iv). In

24 The ‘objectifying gaze’ refers here to the term coined by the French Philosopher, Michel Foucault, who developed the idea of the ‘medical gaze’ which accompanied the the medical profession and its approach to knowledge and organisation. See for example, Michel Foucault, The Birth of the Clinic: An Archaeology of Medical Perception (1973), (English Translation). Tavistock Publications, Ltd. 80

Kenneth Walsh’s study of the encounter between psychiatric nurses and their patients, the concept of relatedness within an institutional domain of care expresses itself in the form of a ‘shared humanity of Being-with’ (Walsh 1999). In this study, Ann struggles at all odds to maintain relatedness with her mother in end-stage dementia despite the sterile confines of the high care dementia ward (see Chapter Five, part B).

Yet, the ‘Personhood movement’ has been challenged on a number of fronts. In Davis’s (2004) sociological argument the elevation of the ‘personhood’ of the dementia sufferer to centre-stage is not seen to adequately address the difficulties that this poses for the caregiver regarding the complexities of caregiving in a modern world. This echoes the ‘complicity argument’ Mendelzweig (2009) raises earlier in relation to the tendency for practitioners to err on the side of caregiver burden in their considerations of dementia diagnosis and options for management. Either way, there are complexities here for how practitioners negotiate this space between the ‘personhood’ of the family member with dementia and the carer’s wellbeing in the approaches they offer for managing the course of dementia.

In a related vein, Davis (2004) argues the contradictions in the conceptualisation of personhood expose a fraught space within families who are struggling to reconcile the personhood of the dementia sufferer with their own ability to cope as caregivers. These psycho-social aspects of the dementia experience are also, Davis argues, more than dilemmas of ethics or values in families, but raise troubling ontological questions of ‘how one can be said to exist in the world with dementia’ (Davis 2004, p.373). While these debates concern the advanced condition of the disease, the complexity of dementia as an illness is precisely that it goes to the very heart of what it means to be a person in the context of an illness that robs the self of its identifiable core (Kitwood in Miesen eds., 1997).

A number of post-modern scholars have taken up this complex question from the position of the ‘coherency or incoherency of the demented voice’ as an important aspect of embodied personhood (Mclean 2006). This paradigm has also branched into narrative approaches to dementia, both of which I consider

81 shortly. For the purposes of the discussion here the ‘incoherent’ voice, or as McClean (2006) describes it, the ‘coherent voice without facticity’ poses new ways of thinking about what ‘relatedness’ means in the inter-subjective world between ‘self’ and ‘others’ in dementia.

On the one hand, this raises new ways of considering and communicating through the behavioural changes of dementia’s progression (Galvin, Todres & Richardson 2005); on the other, it underscores the need for medical explanations (‘dementia as brain disease’) to assist families and communities struggling with the disruptive and atypical behaviours characteristic of dementia’s manifestation in some sufferers (Alzheimer’s Australia 2006). In the experience of one of the families in this study, the condition of anger in the family at the dementia ‘sufferer’s’ bizarre and erratic behaviour became one of sadness and compassion when diagnosis was finally made.

A further challenge to the dominant conception of ‘personhood’ is that it privileges Westernized notions of individual autonomy. This, argues McMillan, Kampers, Traynor & Dewing (2010), ‘may overlook the mutual responsibilities and the entities that make personhood meaningful in an Aboriginal context’ (p. 164). In this perspective, the subjectivity that is embraced inter-subjectively is broadened to include that which belongs in a horizon of meaning that holds a notion of person-centred care in a cultural conception; one that speaks to an Indigenous Australian experience of relatedness.

In this study, Robert’s story which unfolds in the following chapters, the family home in the urban enclave becomes the site for extended family obligations and responsibilities. It is the place where over the generations members of the family from far and wide have congregated when in need. It is the place where he wishes to care for his parent but unlike on Country, there are bureaucratic restrictions on who can live in a public housing space. This, he tells me is a major impediment to how he wishes to care ‘in the right way’ for his parent and we spend much of the time during the interview ‘dwelling’ in this distress.

The personhood movement has emerged as a powerful alternative paradigm for shifting approaches to dementia and dementia care away from bio-medical

82 emphases of the brain in dementia’s conceptualisation and towards psychological, social, and ethical dimensions of the dementia experience. Other paradigmatic approaches to dementia have pivoted on the turn to ‘personhood’ but they take up other areas of concern in the intersubjective spaces of the dementia experience.

Dementia and narrative

Narrative approaches to the experience of dementia as an intersubjective experience cut across a number of intersecting scholarly paradigms. These include the narrative turn in dementia (Randall 2009); postmodern thinking about dementia (Leibing & Cohen 2006); the turn to humanism and embodiment in dementia’s living expression (Todres and Galvin 2006; Phinney & Chesla 2003; Martin, Kontos & Ward 2013), and the explicit hermeneutic focus on meaning making in dementia (Widdershoven and Berghmans 2005).

The gerontologist, William Randall, grounds his narrative perspective on ageing and dementia in his belief in the fundamentally human need to make meaning through narrative (Randall 2009). His turn away from a bio-medical perspective arises from a conviction that too much weight is given to the bio-medicalization of ageing and dementia with its emphasis on ‘causes and cures’ (p.322).

The concerns Randall (2009) writes about are essentially three-fold and I paraphrase his arguments here. Firstly, he asks us to consider ‘what is the story we are telling about dementia as a society’? I have already drawn attention to the ‘disaster narrative’ in dementia but there are other narratives which Randall finds troubling in dementia’s intersubjective spaces. He argues that older people, and especially people with dementia, face being ‘storied’ or ‘de-storied’ within larger social systems and institutions.

Secondly, he points to the narrative dimensions of memory where there is a fine line between what is ‘normal’ and what is ‘pathological’, a subject of some contention within dementia diagnosis itself. Mendelzweig refers to ‘bridging the gap between symptomatology and diagnosis’ in her scholarly analysis of the

83 steps leading up to a diagnosis of dementia as ‘performed’ in a memory clinic (Mendelzweig 2009).

Randall defines memory as essentially autobiographical and as a ‘dynamic amalgam of facts and fictionalizations’ (2009, p.322). He invokes the research of neuro-scientists such as Antonio Damasio, to argue forcefully for how the impulse to ‘make meaning through the imagination, interpretation and telling of stories is hardwired into our brains’ (p.322). Meaning and identity is therefore a matter of ‘story’ rather than ‘fact’ and ‘we experience our existence’, Randall argues, through a multilayered intricacy of identity stories which encompass ‘our story, family stories, community stories and the broader sociocultural context for those stories’ (p.323). In the complex relational space of the dementia experience, Randall writes, “others will be custodians of our stories in life in death and in dementia” (p.323).

This is a particularly powerful interpretive lens for communities holding oral cultural traditions. In Aboriginal and Torres Strait Islander communities the tradition of ‘yarning’ is a dialogical process of conversation for ‘passing history and knowledge on, for gathering information, for telling and sharing of stories’ (Bessarab & Ng’andu 2010).

The ‘yarning’ of older Aboriginal people, for many persisting well into cognitive decline, raises interesting issues for the relative problem of short versus long term memory loss in the family’s experience. In the words of one of this study’s carers, before nursing home placement ‘mum had a perfect mind. She could tell the family stories and was so valuable to us’. This carer’s greatest fear was that her mother would ‘lose her mind’ in the nursing home because she didn’t have family around ‘to yarn with’.

As a framework, the notion of narrative custodianship has particular poignancy and relevance for this study. Firstly, dementia threatens to disrupt the integrity of a person’s sense of self in the world and the way in which that person is remembered by loved ones both in the family and the broader community. I write earlier of the struggles community members express reconciling the stature of Elders in their communities with the condition they now find these

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Elders in, in dementia. This becomes a profoundly disorienting experience for community members themselves.

Secondly, the perspective of ‘narrative custodianship’ has deep historical resonance for re-storying and honouring the struggles of Indigenous older people as a whole. In this respect, present day experiences of being Indigenous and experiencing the dementia phenomenon are interpolated into broader public narratives of historical trauma and related experiences of disadvantage and marginalisation (Mohatt, Thompson, Thai & Tebes (2014).

These stories make their way into the dialogical space of the interview about ageing and dementia and exert a powerful presence and marker of identity. A carer describes as if it were yesterday her mother’s feisty response to a racist encounter that occurred over seven decades ago and the manner in which she stood firm in the face of this humiliation. And that’s why she is like she is today. She’s a fighter.

The ‘crisis’ of dementia is itself entangled in the broader relationships of this historical narrative creating a hyper-vigilance and sensitivity to the ways in which, in particular, non-Indigenous medical and care professionals comport themselves in the intimate relational space of an Indigenous family in crisis.

Where this works well it imbues the relational space with a healing quality as in the carer support group using a ‘yarning’ approach (Chapter Five, part B); where it doesn’t it reignites feelings of powerlessness and rage which are seared into the relational space of the interview. A carer recounted her outrage in an incident that occurred at a hospital where they took her mum in severe pain and distress during the middle of the night. She had only just fallen asleep after all that pain and they said, ‘oh you can take her home now’, and it was 4.30am. Well, I said I’m not taking her anywhere! And the hospital’s not getting away with it!

Finally, as Randall writes, “others step in to story our lives for us, less by anticipating our future, however, than by holding and (ideally) honouring our past – ‘ideally’ because they can just as easily diminish us in their imagination…” (2009, p. 323). 85

This is a powerful theme that can be enlarged to include a nation’s imagination in the post-colonial view. For in the entanglement of the individual story in a wider historical narrative, the potential of ‘dementia’ to dismantle the view of a person’s significance in the ‘world’ has a counterpart more broadly, in the potential for erasure of the historical significance of the experience of Australia’s original inhabitants in the ‘white’ imagination itself. The idea of narrative custodianship is therefore a conscious moment in inserting the importance of Indigenous identity and identification; of ‘being’ and belonging as meaningful elements into the space of crisis and healing in dementia itself.

To conclude this section of the chapter, I have offered three paradigmatic lenses for viewing the ‘lived experience’ of dementia as a social and ontological relation. This accentuates differences in both where the emphasis lies in how a phenomenon - in this case ‘dementia’ - is viewed and conceived at a conceptual level; as well as locating where is the disruption for carers, families and health professionals in the ‘world’ of dementia as it is lived. It illuminates what Svenaeus (2000) describes as a ‘pattern of meaning’ which shows up as significant in differing ‘cultural worlds’ of dementia.

By viewing dementia across paradigms and perspectives its complexity, meaning and ‘signification’ unfolds as the contested spaces of a complex, value laden, and often, bewildering phenomenon. This, as Hughes, Louw and Sabat (2006) point out, ‘facilitates an important dialogue between philosophical thinking and practice’, which is the thematic methodological foundation for this thesis.

Summary and conclusion of the chapter

This chapter addresses the ‘lived relation’ of methodology and ‘dementia’ respectively. It considers research as a mode of ‘being-in’ a situated research practice and how the theoretical ideas of the scholarship resonate with actual embodied experiencing. Two key themes that emerge throughout are the ‘ontic’ discomfort that is a feature of the complex terrain of both ‘dementia’ and research practice in the contested relations of a post-colonial inquiry. 86

A further theme that emerges throughout is the ‘lived relation’ of vulnerability that becomes disclosed in the space ‘between’ ‘self’, ‘other’ and ‘world’. This reveals the social and ontological disruptions which arise both from a complex history of colonial and race relations, and the day to day vulnerabilities of ‘being-in’ this and in ‘dementia’s’ relational space. While this study begins with the centrality of the family caregiver in an Aboriginal ‘world’ of ageing and dementia, it is at the heart a study of ‘being-in-research’ in this complex space.

To conclude this chapter, I draw on William Randall’s narrative call, namely, what is the story we want to tell about dementia. This is the tacit intention for chapters Four and Five in which I immerse myself ever deeper into the experience of ‘dementia’ in the cultural and experiential ‘worlds’ between me and participants.

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Chapter Four

Narrative disclosure: the interview as an encounter in meaning-making

Introduction

This chapter is the first of two chapters in this thesis which dwell explicitly in the ‘data’ of participant experience and its meaning. By this, I refer to the experience of participants as recounted to me during in-depth interviews I conducted with five family caregivers - some of whom were interviewed several times over the course of a year - as well as my own experience as a ‘situated’ and reflexive researcher (Finlay 2002a; 2002b). This dynamic opens up the ambiguities inherent in conducting research into experience and its meaning as the process elucidates what aspects of my own experience and meaning as researcher are itself disclosed in the study’s questionings and findings (Walsh 2003). This approach draws its inspiration from the Heideggerian proposition that in order for us to recognise something, ‘as something’, then, “our understanding must itself somehow see as disclosed that upon which it projects” (Heidegger, quoted in Kompridis, 2006, p.33).

What I will demonstrate in chapters Four and Five is the process by which I have constructed the framework of meaning for the analysis of the ‘data’ of lived experience. The writing will embody the meaningful nature of the research process as method, data and ‘research findings’ cohere (Grace, Higgs & Ajjawi 2009; Jones & Borbasi 2003).

I begin this chapter with Part A, addressing the type of research that this is, namely, that which I refer to as disclosure research. This is a tradition of research which works with Heideggerian notions of “world disclosure”, by addressing the manner in which ‘a world’ becomes intelligible to us and through which we can display some of its meaningful quality. The questions that I keep in mind throughout this chapter are: how do experience and meaning itself 88 constitute ‘data’; what kind of knowing is this; what do we draw from to access and put into practice this kind of knowledge; what kind of ethical issues arise in the collection of this kind of ‘data’; and what kind of reflexivity does this generate.

In Part B of the chapter, I set up a template for meaning making and demonstrate this through the display of ‘data’ in the form of narrations that show the existential struggles family members grapple with in caring for an older person in cognitive and physical decline. These stories can be described as ‘acts of self-disclosure’ (Martin 2011, p.19), as they draw me into the lives of each of the participants in the study and identify where is the disruption and struggle in their experience.

In Part C of the chapter, I address the hermeneutic and nature of the interview encounter by considering how meaning is made in the space between me and the participant. This draws on Gadamer’s conceptualisation of the significance of the dialogical encounter between people as the place where things happen; and of the importance of language ‘as the medium in which understanding is realised’ (Moran 2000, p.248-9).

Anticipation

I have waited so long for this moment. After the complexities and delays of gaining participants for my study – which I outline in some detail in Chapter Two - my first meeting with a potential participant is about to be scheduled. Prior to making this call I think carefully about how I wish to present the proposed research, and to some extent myself, to this participant. I am mindful as a researcher of the fine line between creating a welcoming space for peoples’ participation in our research and allowing them room to move within the terms of their own circumstances, values and perceptions. I choose my words carefully. I mention that I am part of the ‘Koori Growing Old Well Study’ and that my sub-study is specifically interested in hearing from people who are caring for, or concerned about, an older person who is having problems caring for themselves. While the study is about the ‘dementia’ experience for 89 caregivers, I cannot name this at this stage as I am feeling out how people wish to talk about their experience and what language they use. I am grappling with something the Australian scholars, Verran and Christie (2011, p.21), describe as ‘a fundamentally phenomenological problem’, namely, how to present what is being researched prior to the concept being formed.

My intention for this first phone call is to establish whether potential participants wish to take part in the study, and if so, to gauge where they place their experience with their family member along a spectrum of decline encompassing memory loss, confusion, behavioural change, cognitive decline or dementia. This is on my mind.

What transpires next takes me by surprise. I am unprepared for the intensity and depth of the disclosure I am about to hear on the telephone. The full significance of this disclosure – indeed my understanding of it - cannot be fully grasped at this stage. It is a declaration of issues of great personal and cultural meaning, and in the intensity and manner of its delivery, it is like a testimony. I listen silently and write verbatim notes during the telephone exchange:

“Mum’s body is weak but her mind is good. She tells the family stories. So she is so valuable to us. We ask her things that happen years ago, she remembers. I live with my mother in her house because I am her carer. I acknowledge that it is her house I’m living in. She’s not living with me. The real reason I do this is that she looked after us. So I honour her. My grandmother was very old when she died. Mum had to honour her and look after her; same for me with mum. Aboriginal families have this strong bonding. Mum was in a nursing home but I didn’t like it. I had a bad feeling about it and one day I just went and got her and they didn’t like it. The nursing homes don’t suit me or my mother because of my mother’s sharp mind, her perfect mind. My aim is for her to pass away at home and not in a nursing home or a hospital. Someone on the weekend saw me and said I looked sad. They saw sadness but I don’t know how I really feel. I could heal myself looking after mum. I have all this time now with her in the hospital. I don’t know what to do with it. I’m sort of isolated. And then we have our loved ones, our ancestors. I

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need to find my place. I have to know how I feel inside. I will take part in the research if I agree with it”.

The sentences cascade in an uninterrupted flow of delivery. I am lost for words at the depth of this disclosure. Some statements are deeply familiar to me as I have encountered these sentiments in prior research engagement with communities and in my learning from the literature: the honouring of older Aboriginal people, the preference to care for elders at home, the question regarding the tangible usefulness of this kind of research; and the understandably guarded approach to participation in research given its history and association with colonization itself.

However, I am not sure what Doreen means by her mother’s ‘perfect mind’ in light of her mum’s cognitive deterioration. Nor with what is being disclosed by the ‘need to know how I feel inside’. I am not yet cognisant of the meaningful interconnections between these pronouncements which flow like a stream of consciousness.

As I anticipate this first interview, I feel some unease. Am I prepared for the depth of this disclosure? Is it ethical for me to be privy to this profundity as a researcher? I feel a heightened sense of responsibility for the conduct of this research in which experience and its meaning is at the forefront of the inquiry. I am treading in delicate and complicated experiential ground. I don’t yet have a scholarly language to articulate what is happening, although I am aware that my research is entering a space I have not been to intentionally as a researcher before. I am entering an ontological realm in which the very nature of both of our existence seems to be in question.

Part A. ‘Disclosure research’ as a form of knowledge

I arrive for my interview with Doreen fifteen minutes early. I park in an adjacent street under the canopy of a flame tree. I want to sit here and prepare myself for this interview, by which I mean, prepare myself for entering into a mode of researching that I have not explicitly focused on before: the meaning of

91 experience itself. I close my eyes with the intention of stilling my thoughts and pay attention to the feel of my body in the environment. There is silence save for the sound of the wind coming off the bay and intermittent birdsong. What comes to mind is the significance of this site in which I am parked. This is the hamlet of La Perouse, a peninsula which overlooks the Northern headland of Botany Bay. The HMS Endeavour sailed into this Bay in the eighteenth Century on its voyage of colonial discovery. The significance of this for this community of first contact in Australia is palpable. The lady I am about to interview comes from one of the many families whose forebears interacted with Captain Cook. What an extraordinary trans-generational story of belonging. My mind wanders towards my own family’s circumstances: three continents in three generations. I think about my ancestral history and about the regions and countries of my forebears which, unlike in the community I am engaging with, remain outside the framework of my own experience. With a few minutes still left until the interview, I recline in my seat and absent-mindedly switch on the radio. On the airwaves is a reading from Radio National’s Book Show. I catch the end of an interview with a writer who is talking about his coming to grips with, ‘a life heading towards a meaningful conclusion’; ‘the conclusion of a narrative’. It is the author’s meditation on death and his attempt to, ‘find a clear space for the person’; to ‘find meaning in the story that is about to end’. Narrative, Meaning, Story, Endings…

The words jolt me out of my reverie. There is something deeply evocative that resonates with why I am here. I am struck by this seemingly random coincidence. I become aware of a feeling that I haven’t experienced in my research practice before. It is a feeling of recognition and surrender: both an ‘Aha moment’ in which something is comprehended but not yet articulated; and a feeling in my body of the meaningful nature of my own experiencing at the core of my research undertaking. I feel a renewed sense of purpose for this research and an opening up to the serendipitous nature of experience itself.

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Towards a feeling of openness in research: experience and meaning as ‘data’

The ‘openness’ and ‘surrender’ of which I speak raises a number of issues for the credibility of the kind of research I am engaged in. Firstly, my reverie in the car is an expression of the reflective space I am consciously entering into. This evokes a state of ‘meditative thought’, a hermeneutic resource for imaginative comprehension, which the Eritrean philosopher, Tsenay Serequeberhan, contends is different from the mode of ‘calculative thinking’ routinely used in thought of a more procedural nature (Serequeberhan 1987).

In this more meditative state, I create a space of awareness towards the research encounter I am about to enter into. It is different still, from the space of awareness directed toward the notion of the ‘Other’; both in terms of a collective ‘Other’, such as that of the idea of Indigenous community as a whole representative space, and of the participant as an ‘other’ which I address in Chapter Three. The form of ‘meditative thinking’ I have in mind here, arises from a stance of reflexive openness and a willingness to embrace new possibilities arising from the encounters I am about to enter into. It stems from a place of my own uncertainty regarding the nature of the phenomenon I am researching.

Secondly, the idea that a random co-incidence (switching on the radio) at the very moment when a program on life, death, narrative and meaning can produce a feeling of understanding towards a research story that is only beginning to unfold, gives me something intelligible to hold onto in the uncertainty I feel for this impending encounter. It is this aspect that feels serendipitous.

In their article on serendipity in research, Fine and Deegan (1996) point to the ‘temporal, constructivist dimension’ that enables a plausible research story. By this, they are referring to an account that gives shape to the mix of planned, unexpected and seemingly disparate ‘data’ that arises in the process of conducting qualitative research.

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Scholars of the history and philosophy of science will be familiar with attempts to grasp entities and phenomena that can’t readily be understood, observed or measured through more conventional means (Bortolloti 2008). For the purposes of this thesis, I am talking about challenges to more positivistic forms of reasoning, in particular, the idea that valid knowledge (as a form of ‘truth’) is derived from that which is externally measurable, observable and generalizable. In the process of scholarly reasoning, a number of elements need to be considered.

The stance of the researcher

The idea of serendipity in research requires that the researcher be open to different ways of knowing. This entails the possibility that ‘something else’ is going on in the inquiry, and that it is this aspect that will lead towards its meaningful outcome. Ann Holroyd captures this process when she writes: “Experience, when approached from a stance of openness, places our mental and intellectual processes at stake, and demonstrates a willingness to surrender our attachments to our current knowledge. Through this way of being, individuals are intent not on knowing more but on knowing differently (Holroyd 2007, p. 3).

This feeling of knowing differently begins with the researcher. It indicates a willingness to embrace knowledge from a different vantage point to received conventions. By this I mean to enter into the experience of learning in a different way to one’s usual approaches. Two influential scholars who disrupted positivistic conventions of their day with ideas on how scientific knowledge and forms of argumentation were entered into were Charles Sanders Pierce and Michael Polanyi (Mullens 2002).

Pierce is regarded as the founder of ‘Abduction’, the term given to a mode of reasoning which introduced a third type of inferential explanation into scientific argumentation to those prevailing at the time, namely, deduction and induction (Mullens 2002, p.199). As Mullens argues, the key to abductive reasoning for

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Pierce was the introduction of an explanatory category for dealing with ‘the unexpected’ and the ‘instinctual’ (p. 199-200).

In a similar vein, Polanyi’s seminal contribution lay in his theory of ‘tacit knowing’ as an innovation to prevailing philosophical and scientific thinking (Mullens 2002). ‘Tacit knowing’ embraces the place of invisible, embodied and unarticulated knowing as an important element for scientific innovation. An important part of this is the manner in which something novel is grasped. For example, when performing a skilled action, Polanyi states, “there are things that we know but cannot tell”; these only become evident when performed as ‘a whole action’ (Polanyi 1962)25. I shall return to these forms of knowing as modes of reasoning shortly.

The body’s place in knowing

In Polanyi’s account of ‘tacit knowing’ we draw from our body. This process he referred to as, “an act of indwelling by which we gain access to a new meaning” (1962). In this ‘implicit form of bodily knowing’, there are a number of significant elements. Polanyi’s argument is worth paraphrasing here, as it will become evident in Chapter Five that there are synergies with Indigenous ways of knowing. In Polanyi’s account, it is only in the whole that meaning is revealed. At this stage, meaning may be sensed in a liminal way. Secondly, the instrumental character of the body, ‘as a tool for living’, has a relational component. Thirdly, this form of knowing draws from an invisible, instinctual dimension of experience, an experience deeply embedded in a total environmental context. Fourthly, ‘bodily indwelling’ is always more than the physical body and embraces a conception of mind and spirit26.

25 I paraphrase Polanyi’s argument from the on-line article available at: http://www.compilerpress.ca/Competitiveness/Anno/Anno%20Polanyi%20Tacit%20Knowlng %20RMP%201962.htm The reference for this article is: Michael Polanyi (1962). Tacit Knowing: Its Bearing on Some Problems of Philosophy. Reviews of Modern Physics, 34 (4). Oct. 1962, 601-616 26 I refer the reader here to Polanyi’s arguments in Part 11: ‘Indwelling, in Tacit Knowing: Its Bearing on Some Problems of Philosophy’, as cited above 95

For Polanyi, this process of ‘indwelling’ applies as much to the natural sciences as it does to the humanities. Its relational character can be grasped in his assertion that ‘a gap is bridged’ between, what he terms the, “‘I-It’ and the ‘I- Thou’, by rooting them both in the subject’s ‘I-Me’ awareness of his own body”27. ‘Tacit knowing’, as bodily indwelling then, suggests a specific form of awareness deriving from the body in the act of perceptive knowing.

In a similar vein, the American philosopher and psychotherapist, Eugene Gendlin (born in 1926 some three decades after Polanyi’s birth), developed his experiential phenomenology on the basis of a ‘philosophy of the implicit’ (Gendlin 1962). This draws on the idea that our organic mode of living - referring to our place in an environmental wholeness - gives us a ‘prior form of knowledge’, an instinctual knowledge, to other more explicit forms. In Gendlin’s argument, we access our implicit experience through language that ‘feels right’ in capturing the meaning of our experiences, and not through ‘logical schemes of thinking’ which we attribute to our experiences.

Gendlin’s argument is an appeal to direct experience in which there is an intimate connection between our experience, the language we use, and the situation that gives rise to both (1962, p. 286). We often struggle to find ‘the right words’ to say what it is we want to say, or we may not have the words to describe what we have experienced.

The health philosopher and practitioner, Les Todres, describes this process of sense-making as ‘arising’, “not from a person’s ‘cognitive processes’ but from the participation of the lived body as an authenticating or validating procedure” (Todres 2007, p.31). Hence the question guiding verbal expression, do the words feel right?

Gendlin deploys the notions of ‘focusing’ and ‘thinking at the edge’ for what he describes as ‘Entering-into-Experience’ (Gendlin 1962)28. ‘Entering-into-

27 These relational concepts - ‘I-It’ and ‘I-thou’ - are the cornerstone of the philosopher, Martin Buber’s, existential philosophy of dialogue. Both men lived around the same time, 1891-1976 (Polanyi) and 1878 – 1965 (Buber). See, Zank, Michael, "Martin Buber", The Stanford Encyclopaedia of Philosophy (Fall 2008 Edition), Edward N. Zalta (ed.), URL = 28 I refer the reader to the website of ‘The Focusing Institute’ which centres on Gendlin’s ‘Philosophy of the Implicit’: www.focusing.org. 96 experience’ is entering into a specific form of embodied awareness as a resource for knowing the world. The scholarship of Maurice Merleau-Ponty, the influential French phenomenological philosopher of the twentieth century, gave increased legitimacy and currency to areas of inquiry working with notions of the body as the perceptual ground of experiential knowing (Merleau-Ponty 1962). Ideas of the nature of bodily perception and embodied knowing have become the vantage point for a sizeable body of scholarly work which draws on the body’s sense of primordial knowing to inform research and professional practice.

In the area of the humanities, a robust body of scholarship encapsulates this approach. In Les Todres’s book, Embodied Inquiry, the living, participating body is the ground for revealing expansive and meaningful worlds (Todres 2007). In Galvin and Todres’s notion of ‘embodied, relational understanding’, the argument is further refined to elaborate a practical method for the ‘caring professions’ in which multifaceted knowledge is required for attunement to complex human situations (Galvin and Todres 2013). Similarly, Linda Finlay works in a framework of ‘reflexive embodied empathy’ which addresses the bodily, inter-subjective space of the participant-researcher relationship, using the body to tune into her own and another’s experience (Finlay 2009). The educator-writer, Sondra Perl, adapts Gendlin’s related concepts of ‘felt sense’ and ‘thinking at the edges’ to inform an embodied approach to writing as an expression of the interplay between a writer’s experiencing and their written expression (Perl 2004). This kind of reflective practice is a form of meditative tuning in to that space between our ‘felt sense’ and the words which ‘feel right’ in reaching towards that experience.

The embodied location of the researcher-scientist

The ‘living, participating’ body as an elemental source for the development of knowledge finds expression in areas of scholarship which spring from our experiential modes of ‘being-in-the-world’ as an existential relation. Much of its application in research and practice tends to be in the social sciences, the

97 humanities, and especially in the field known as ‘the caring sciences’. The work of Patricia Benner and colleagues in nursing research is a landmark of this kind of scholarship, in which elemental meanings of caregiving are made manifest in the existential, relational world of nurses and patients (Benner ed., 1994). Similarly, in Kenneth Walsh’s study of psychiatric nurses and their patients, meaning emerges in the embodied, dialogical encounter of nursing as a caring, relational practice (Walsh 1999). In Lindsay Paul’s study of caring for ageing parents, an existential perspective of embodiment in caring is used to enhance the empathic and meaningful dimensions of informal care giving (Paul 2002).

The situated nature of contemporary research practice is also embraced, although to a lesser extent, in areas such as natural science, laboratory science and cognitive neuroscience. For example, in Roberts and Mackenzie’s (2006) article, science is analysed as a form of embodied practice. In Venkatesan’s (2008) post-modern take on science as a ‘constructor of the world, our bodies and identities’, the scientific procedures of the laboratory are likened to the storyteller’s narrative constructions. In the neuroscientist Antonio Damasio’s books, Descartes Error (1994), and The Feeling of what Happens (1999), the pervasive scientific tradition of a separation between a thinking mind and a feeling body is challenged as body, emotion and consciousness are shown to work together. ‘First-person’ and intuitive approaches are gaining ground in areas of scholarship more conventionally associated with positivistic methods and modes of argument (Varela and Shear 1999).

The embodied approach to research practice is extended by the scientist, Martin Eger, into making the case for a hermeneutic philosophy in scientific inquiry (Eger 1993). Eger’s main argument derives from Gadamer - and by association Heidegger - in that a fundamental mode of being human is our existence in the dialectical space between what we experience, what we project and what we understand. To illustrate his argument for the ontological claim to meaning, Eger asks us to consider the question of ‘what happens when scientists face nature ‘in the raw’’? (1993,p.15). It is here that we find a similar language to notions of ‘felt sense’ and ‘indwelling’, described by Eger as, “the entrance point to the state of ‘being in’ that which one is interpreting” (1993, p.16). The scientist is here located in their world in intimate relation to the subject of their 98 inquiry as a whole ‘interpretive system’, thus moving the scientist, as Eger says, “beyond the subject/object dichotomy” (1993, p. 11).

Embodiment and the lived relation: tensions of difference

What hermeneutics offers to scholarship is that it dwells in the spaces between subject and object, between subject and world. The ‘living, participating body’ is an existential relation in the space between body and world. Here I return to the concept of ‘embodied knowing’ to confront a complex dilemma in the conversation between ontology and corporeal existence; a dilemma that threads through chapters Two and Three.

At a universal level, Gendlin’s undertaking revolves around the translation of tangible ‘felt experience’ into conceptual study: the subject of his book, Experiencing and the creation of meaning (1962). Gendlin sees his notion of ‘felt meaning’ as analogous to Merleau-Ponty’s notion of ‘emotional essence’, which Gendlin argues, “is a property of the body” (Gendlin 1962, p. 287). In this conceptualisation, the body is the primary site for knowing the world; and as Merleau-Ponty’s phenomenology of perception tells us, ‘it is the body itself which is tangled up in its own perceptions’ (Diprose and Reynolds (eds.) 2008).

For my own inquiry, I consider how the perception, meaning and experience of ‘dementia caring’ might be different for families when lived through an ‘Indigenous’ embodiment. This raises issues of how to speak to tensions of difference within phenomenological and existential approaches which draw on universal structures of experience.

In her chapter on feminism and race theory, Ann Murphy critically scrutinizes the idea of a ‘universal’ experiencing of the body in Merleau-Ponty’s scholarship (Murphy, in Diprose and Reynolds 2008). By this, Murphy is referring to Merleau-Ponty’s, “‘corporeal schema’ as the figure of the lived body as it is subjectively experienced” (2008, p.199). With reference to the experience of colonisation, Murphy quotes the influential philosopher of race, Franz Fanon, against a universal ‘corporeal schema’, whereby the, “pre-reflective sense of the

99 body’s integrity and intelligibility is irrevocably ruptured by the experience of a racialised encounter with the colonizer” (Murphy in, Diprose and Reynolds eds., 2008, p.205).

Similarly, in Lewis Gordon’s Africana philosophy of existence, he draws our attention to what he terms ‘the lived reality of a denied humanity and a denied historicity for those on the underside of conquest and colonisation’, arguing, as I write in Chapter Three, that in the ontological relation of the colonial encounter, ‘being’ has its corollary for people of colour in ‘non-being’ (Gordon 2000, p.1-4).

These tensions of difference disrupt universal notions of existential experiencing and compel us to consider questions of how the body knows itself. Yet, as Murphy also argues, it is through our ‘ambiguous position as both subject and object’ that universal notions can be interrogated and even ‘appropriated’ in the direction of ‘a becoming’ (Murphy, in Diprose and Reynolds eds., 2008, p.198). The gift of Merleau-Ponty’s scholarship, in Murphy’s words, is that it, “lets the lived experience of the body serve as a guide” (2008, p. 200). We grasp something of its nature through the ‘felt meaning’ in our body, thus returning us to Gendlin’s central task, namely, how we use the perceptual tools that our bodies are to create meaning out of our experiences. For Gendlin, this involves bringing ‘felt meaning’ from the ‘edges’ of our experiencing into the light of reflection. For Heidegger, it involves using ‘moods’ as signs of existential disruption to ‘everyday’ modes of being and relating.

Modes of reasoning in research: ‘deductive’, ‘inductive’ and ‘abductive’

Thus far, I have demonstrated the arguments for viewing the researcher- scientist as an embodied and contextually situated interpreter. The idea I am looking at here is the notion of experience ‘as data’ and its status as a valid form of knowledge. This requires an understanding of the nature of the relationship between the research inquiry and its mode of reasoning. It begs a number of questions: what is the underlying intention of the inquiry? What kind of 100 information is being sought? What is the purpose of the research? What are the conditions in which inquiry takes place?

Most research in the health social sciences cites deductive or inductive modes of reasoning to justify their claim to knowledge. ‘Abductive’ reasoning as a third mode is often used, particularly in research drawing on personal testimony, yet this approach is often not explicitly demonstrated as a mode of reasoning (Douven 2011).

In the case of deductive argument, knowledge is the outcome of a process of analysis directed from a theory or hypothesis to a set of assertions that are ‘tested’ to produce ‘valid’ knowledge. In the scientific tradition, this is a hypothetico-deductive process of reasoning in which conclusions follow logically from the premises, thus ‘consolidating existing knowledge’ (Bortolotti 2008).

In the social sciences, inductive research is the outcome of reasoning or argumentation that begins with an immersion in empirical data, proceeds through the observation of patterns and repetitions toward the generation of themes, and finally, leads to a theoretical position or generation of a theory (Babbie 2001). Bortolotti (2008) describes inductive reasoning in the sciences as a process of inferring from what we already know to a hypothetical situation whose scientific logic means we cannot verify our conclusions with any certainty, rather we support our conclusions because they are ‘likely to be true’ (p.35).

Abduction is a third mode of analytical reasoning, also referred to as ‘inference to the best explanation’ which provides a clue to its usage as ‘the most plausible of a number of possible explanations’ (Douven 2011). Like inductive reasoning, abductive reasoning adds something novel to the premises of a given inquiry, but in the language of mainstream science, while its conclusions may be regarded as rigorous, they lack the validity status attributed to the strength of the logical relation between the premise and the conclusions as in deductive modes of reasoning. This is only problematic if the nature of the research requires confirmation and generalisation.

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A significant feature of abductive reasoning is that it integrates insights that are unexpected and noteworthy into research inquiry. In Mullins’s (2002) comparison of Pierce’s abduction and Polanyi’s ‘tacit knowing’ ‘implicit’, ‘felt’ and ‘invisible’ dimensions of experience have legitimacy as ‘primordial forms of knowledge’. These as well as ‘instinctual’ dimensions of experience give legitimacy to perceptual judgements as abductive forms of reasoning (2002, p.203). As Mullins goes on to argue the ‘intuitive’ or primordial level of knowing functions as a springboard for innovation in inquiry, although as envisaged by its founder, William Pierce, abduction was meant to comprise ‘a preparatory phase’ in the research endeavour, thereafter moving into deductive or inductive modes of reasoning (2002, p.200). Pierce noted that ‘while everyday abductions were not formally tested, they are challenged by our ongoing contact with the world’ [my emphasis] (p., 204), thus bringing to the fore the hermeneutic nature of this mode of reasoning in relation to what is colloquially known as ‘lived experience’.

Thus, while deductive reasoning leads to confirmation of knowledge claims, and inductive (and abductive) research introduces a new element into existing research, abductive reasoning is a strategy which in addition opens up possibilities for modifying how we proceed in contingent, uncertain, or complex situations. This is well illustrated in Vida Bajc’s (2012) ethnographic practice, where she used abduction as a revised analytical method to cope with the all- pervasive uncertainty that threatened to derail her inquiry. This occurred because of the highly contextual and contingent nature of her practice which demanded an approach to her inquiry that could take her deeper inside her questioning. As Bajc asked herself, ‘What was this uncertainty? How could it be explicated through the data? What were its analytical and theoretical implications? How was this insight arrived at in the first place? What kind of methodological and conceptual reflections were required’ (2012, p.80). While these were not the questions that opened her inquiry, they became the questioning that allowed her to see other possible ‘truths’ opened up by her research.

Thus, what tends to differentiate abductive argument from deductive and inductive forms of reasoning is its questioning of existing modes of reasoning in 102 research. In this sense, abduction contains an inherently hermeneutic element. In order to meet the benchmark for a ‘disclosure argument’ in Heidegger’s conception however, it must of necessity ‘let something be seen’ (McGrath 2009, p.6).

This process is well described by Nikolas Kompridis (2006) writing of analytical methods which draw on disclosure arguments. He writes, “since there are no procedures or empirical methods for disclosing the world, the cognitive component of reflective disclosure is not one that can be extracted from the rationality of any procedure or method” (2006, p.117). This leads one to ask the inevitable question, what gives scholarship based on disclosure arguments their validity, legitimacy and cogency?

The philosophical underpinnings of ‘disclosure research’: Heidegger, Gadamer, Ricoeur

While the colloquial understanding of the word ‘disclosure’ tends toward the confessional, as a mode of experiencing the phenomena of the world, disclosure for Heidegger is a ‘laying open’ of the world (see discussion in Chapter Two, part A). In this ‘laying open’, the hermeneutic is revealed, that is, meaning itself. This constitutes Heidegger’s notion of ‘ontological truth’, even if our grasp of it is partial and elusive. What then does this form of ‘truth’ draw on to show itself?

Further, if our access to ‘truth’ is but partial and elusive, what can this offer to scholarship in the face of ‘established’ truths that are logically argued and consensually derived?

Heidegger’s Being and Time (1962) offers the following for this discussion29. Firstly, ‘truth’ arises in the realm of ontological reality as a characteristic of ‘dasein’ itself and inhabits an existential-ontological space of existence. In other words, the notion of ‘truth’ is not primordially a property of an epistemological

29 In this discussion, I draw from section 43, “Dasein, Worldhood and Reality”, and section 44, “Dasein, Disclosedness, and Truth”, in BT, 1962, p. 244-273, to paraphrase Heidegger’s arguments.

103 space (how we come to know things) but realises itself in this space of knowing where it finds expression in a language of experience. From a Heideggerian perspective, the type of ‘truth’ that disclosure offers springs from the well of existence itself. It is Heidegger’s notion of ‘being-in-the-world’ that discloses our relationship to the world in which we live. As such, it can never be the “object” of our thought, but rather, emerges imperceptibly through our existence.

Secondly, the point of departure for disclosure to occur is a ‘traditional’ idea of ‘truth’, in other words, that which operates in the public discourse. Thus, we begin our analysis as Heidegger argues, seeking to understand ‘the ontological foundations of that conception’, which is, the public view. The clues to this – as outlined in Chapter Two of this thesis – are contained in the question: how are we in this understanding?

For disclosure to occur we must reveal that which is ‘covered over’ by public speak. The problem of ‘truth’ for Heidegger is a problem of the relationship between the ontological (being) and the epistemological (knowing). However, this relationship is not one of ‘correspondence’ (McGrath 2009), but rather emerges in the interplay between that which is visible to us and that which is concealed from us in our experiencing. This aspect, argues McGrath (2009), distinguishes ‘propositional truth’, whereby something can be shown to correspond to something else, from ‘primordial truth’, which illuminates an ‘unveiling’ (p., 2). The former delineates a notion of ‘truth’ with a corollary in ‘falsehood’ (p., 2); while the latter, is ‘trustworthy’, in relation to supporting ‘a concrete reference to living’ (p., 3).

This leads to a third aspect of disclosure in Heidegger, which is, if the act of interpretation is also an act of understanding, namely, how things are ‘uncovered’, it follows that there is a constructivist quality to the idea of ‘truth’, in that, we must recognise how it is that we recognise something, ‘as something at all’. This returns me to Heidegger’s quotation which I present earlier in this chapter, namely, “if there is to be any understanding of something “as something”, then our understanding must itself somehow see as disclosed that upon which it projects”. The idea of ‘truth’ here emanates from Heidegger’s

104 notion of intentionality, in that we are directed towards ‘truthfulness’ arising from our own existential ‘situatedness’; and from our prejudgements. This is what McGrath calls ‘situated disclosure’, and as he goes on to argue, since we can only know something from ‘inside our immersion in it’, we have no grounds for seeking validity in propositional or theoretical terms.

In a similar vein, Dermot Moran states of Heidegger’s project, ‘interpretation is carried out primordially not in a theoretical statement but in an action of circumspective concern’ (Moran 2000, p. 235). This is a notion of ‘truthfulness’, emerging as McGrath expresses it, ‘out of a field of possible showings’ (McGrath 2009, p.8). In this reckoning, any claims for its persuasiveness occur primarily in its capacity to shift currently available meanings.

Hans George Gadamer, another influential philosopher working with ideas of ‘world disclosure’, was greatly influenced by Heidegger’s exposition of ‘truth’ as an ontological matter. Gadamer too, saw the potential for ‘truth’ as a ‘questioning of the meaning of ‘being’’; and both philosophers saw in language the ‘process by which meaning emerges’ (Moran 2000, p.248). Yet, it was Gadamer who elevated language into a practice of dialogical engagement, allowing us to speak of the research and professional encounter as a hermeneutic experience. Moran notes that while both Heidegger and Gadamer emphasised the ontological nature of human ‘dwelling within the world’ – encapsulated by the idea that ‘language ‘speaks’ man’ (Moran, p., 250) - it was Gadamer who emphasised the need to consider the ‘nature of the distances that open up between human beings’: “the true locus of hermeneutics is in this in- between” (Gadamer, quoted in Moran, p.251). ‘Disclosure’ for Gadamer can thus be found, as Moran articulates, ‘in the events that occur between people and their tradition as they emerge in dialogue’ (p.249).

It is this aspect that gives hermeneutics its cogency as an approach to inter- cultural dialogue and understanding (Dallmayr 2009). Dialogical engagement, in its focus on modes of human existence and ways of ‘being-in-the-world’ discloses what is opened up between cultural worlds.

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Ricoeur, like Heidegger and Gadamer, sees human experience as inherently interpretive, with language central to the disclosure of worlds. Ricoeur however, develops the concept of world-disclosure from Heidegger’s central understanding of disclosure as the horizon of our ‘being-in-the-world’; and from Gadamer’s predominant focus on the dialogical engagement between human beings as revealing worlds, towards the notion of the world-disclosing function of texts themselves, including, what is opened up by the space ‘between the text and the reader’ (Ricoeur, in Valdes eds., 1991, p.492).

The world thus disclosed goes beyond the face to face dialogical encounter; beyond the text and the reader to reverberate, as Kearney describes it, through ‘the sedimented horizons of history and tradition’ (Kearney 2004, p.4). In Kearney’s introduction to Paul Ricoeur: The Hermeneutics of Action, he describes this process as ‘the long route of multiple hermeneutic detours’ which meaning must take through history, culture, language and tradition in its journey of disclosing worlds (Kearney 1996, p.1).

To conclude Part A of this chapter, in drawing from a scholarly language of experiential ways of ‘being-in-the-world’, disclosure arguments trouble the very conception of reason itself in judgements about claims to knowledge. The philosopher, Charles Taylor, regards this as a move against society’s elevation of epistemological arguments over ontological ones, an issue he tackles head on in his book, Philosophical Arguments (1995). At the core of this endeavour is a questioning of how we grasp the enigma of experiential knowledge itself. This returns us to the fundamental Heideggerian preoccupation with the notion that ‘being is not presence’ (Harman 2007, p.1). This seminal idea challenges the Western metaphysical tradition which, in Taylor’s words, elevates ‘presence’ to, “a kind of unmediated epistemic contract with reality” (Taylor 1995, p. viii).

In the disclosure of worlds, we must still ask ourselves a question that Kompridis poses, namely, “how does one argue with a picture, ‘an ontology’, or a way of seeing?” (Kompridis 2006,p.121). Kompridis notes that ‘neither inductive nor deductive claims are adequately prepared to take on these kinds of arguments’. What Kompridis argues is that if we are to use world disclosure as a ‘cogent approach to critical argument’, then our research needs to, “proceed

106 indirectly, disclosively, uncovering and exposing the background cultural understanding (ontological presuppositions) that supports the prevailing understandings of the world from which our inquiry sets forth (2006, p.121).

For philosophers like Heidegger, Gadamer and Ricoeur as well as contemporary philosophers and theorists such as, Taylor and Kompridis, this is the litmus test of a disclosure argument, and undoubtedly, what gives this type of scholarship which I claim for my study its cogency, meaning and relevance.

Part B. Entering into the circle of care: the significance of ontological stories

Introduction

In their chapter on ‘weaving a phenomenological text’, Jones and Borbasi (2003), talk about the point at which one is ready to ‘commit an account to paper’. This is the point they say at which, “One has made enough sense of the data to render any account at all” (2003, p.93). This point occurs for me after interviewing the first two of five respondents. Yet, even as early as my first telephone encounter with Doreen - the first respondent interviewed - I experience a strong sense that something significant and distinctive is characterising this research. I recall writing in my fieldwork notes after this interview: ‘I’ve been punched in the gut by the raw power of the telling’; ‘I’m unsettled by what is being revealed’. Then a similar thing happens in the second interview. The expectation I hold for the study’s stated purpose, namely, to interview family caregivers of an older person with cognitive decline or dementia, is a pale imitation of what is about to transpire. I have entered into peoples’ lives at a time of profound ontological-existential pain and this throws me into these stories in a powerful way. In both these first and second interviews, I feel the pull of an existential struggle. Its tension surfaces repeatedly throughout the interview moving the narrative backwards and forwards in time and place. It takes me and the participant to a deeper place from the questions which open the inquiry. In my research journal, I refer to what I am hearing as ‘stories of troubled coherence’. I don’t yet have a scholarly 107 language to describe what is happening, but I feel bound to bring something of this impact and quality to light in the display of the research ‘data’.

Once the interviews are complete I move towards an approach which best conveys the significance of these existential struggles in the total intelligibility of the study’s research story. I sense that what I have been privy to are not disparate accounts of events and happenings in the lives of carers, but occurrences grounded in an emotional-temporal field of significance for these family carers.

This form of narrative discourse, Polkinghorne sees as ‘events and happenings configured into a temporal unity’ (Polkinghorne 1995, p.5). I want to convey the way the future, past and present are entwined in the narrative telling. However, I must first pay attention to the ‘felt meaning’ arising from these narrative interviews and the way in which meaning is emerging through ‘being-in’ another person’s disruption. I am moved to write in a manner that expresses the embodied nature of ‘being-in’, what has been described as, the ‘inhabited space of the interview encounter’ (Grace, Higgs, Ajjawi, in Higgs, Horsfall and Grace Eds., 2009, p.120-1). I need to identify what it is that draws me into the ‘inhabited space’ of these interviews with study participants. The next section is an account of the existential struggles that draw me into this inhabited space.

Entering the circle of care: ontological stories as ‘acts of self- disclosure’

To use the analogy of the hermeneutic circle, I enter into the ‘data’ of each participant through the existential struggle which each is expressing. In the language of Heidegger, respondents are ‘dwelling in a set of concerns’ in which they are grappling with the meaning, purpose and value of their caregiving. These existential struggles are compelling ontological stories in that we see something of the manner in which caregivers ‘dwell’ in their concern. They are also stories in which something about the central character (the participant) is revealed: who they are as a person and where their struggle is located (Martin 2011, p.19). 108

I use these stories or anecdotes as ‘rhetorical devices’, in the sense described by Van Manen (1990, p.115-121), to convey how meaning resides in the participant’s disruption; in the ‘conversational relation’ they have with their ‘world’; as a way of expressing difficult truths; as a means to convey universal, rather than generalizable truths; and as a way of articulating tension between the ‘pre-reflective and reflective pulls of language’ (p. 121). It is through these ‘acts of self-disclosure’ that I enter-into the existential world of participants in the study, finding my way towards understanding what it might mean to be a Carer in this space.

Story 1

Why am I here?

The raw emotional power of my first interview with Doreen hits me in the gut. I am face to face with an existential struggle. Doreen is grappling with conflicting emotions being the full time ‘carer’ of her mum, whilst at the same time, recognising that this is what she is ‘meant to be doing’. She is struggling with being confined to the house where her and her mother’s world has contracted to the slow rhythms and emotional intensities of their domestic existence together. ‘What am I doing here’, she repeatedly asks herself, and as with a rhetorical question provides her answer, ‘I’m meant to be here’. ‘I don’t know why I’m here’, she volunteers, and in the same breath, ‘I have a job to do and that job is looking after my mother’. She feels at a loss and ‘can’t handle the separation’ when her mother spends periods of time in hospital. Yet, her mother’s descent into inertia and confinement to the house fills her with despair. ‘What did she want me to do all day? Sit in this chair and her in that chair?’

Throughout the interview, these phrases move backwards and forwards and I can feel their opposing yet simultaneous force. Doreen recounts a simple anecdote which discloses not only her existential grappling, but also, the meaning of the government Carer’s Pension in her referential world.

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I kept putting off getting the Carer’s Pension and I’ve been here for four years looking after Mum. ‘You should take it you know’, the lady at the hospital keeps telling me. ‘The money is there for you to look after your mum’. But I said, ‘I don’t know if I want to stay here’. I kept thinking … there’s the door if I want to walk out … I can. And I’m sorry now ’cos I would’ve got a lot of money and done a lot of things with the money for her in the house. But I was that stubborn I wouldn’t take it. But the money didn’t matter to me you know. It was how I felt. I’d look at the door and I’d think well, there’s the door if I want to walk out. If I had got the Carer’s pension, I felt like I would have been in jail. And the money did not matter. Friends would say, ‘You’re stupid! You’re looking after your mum and you’d get you know a lot of money’. And I said, ‘the money doesn’t worry me. It’s me, how I feel’. So like I said, I don’t know why I’m here. All I know is I am here to look after mum and that’s it.

Story 2

What am I to do?

What runs like a thread throughout Robert’s interview is his existential burden as the ‘responsible one of three sons’, and with his own health, professional and family responsibilities to take care of. He lives in dread of his mother’s decline from her current state of short term memory loss and mild cognitive confusion to an anticipated fear of a total descent into full blown dementia. This is what happened to his mother’s sister, his auntie, with whom he was very close. His dilemma stems from the fact that, although his mother has been in a holding pattern of mild to moderate cognitive impairment for many years, his mum’s sister developed Alzheimer’s disease and deteriorated rapidly to the point where she recognised no-one in the family and required constant care. In addition, his mother cared for her sister at home with some assistance from other family

110 members. Robert is torn by his desire to care for his mum himself and the reality of his capacity to do so. He is living in a state of trepidation that his mother will suffer the same fate as his aunt, and, as the ‘most mature of three boys’, – the one who has a job, a family and a car - he feels the weight of kin expectation and responsibility on his shoulders. His existential dilemma is captured by this narrative telling.

If it was to hit me [his mother’s descent into advanced dementia] I wouldn’t be shocked because I could see it as a thing that’s been coming for a long time. Because we’ve been down that path before when my auntie was sick; and my father was sick and they’d been sick for a number of years. So I guess I’m prepared in the same way as I was then, as my mother and I have been involved all the time in their care. Mum had a philosophy or belief of not putting them in care and thought that home was the best place. And yet when I get to that stage that’s where the ‘I don’t know what to do factor’ you know. When my mother gets into a state where she may not be able to care for herself I don’t know what to do next. What do I do about it? I’m the one who is given most of the responsibility for doing things so what do I do you know? Plus I’ve got my own life, my job and family that I have to … And she was always against nursing homes and I don’t want to see my mother in that condition or in that state but in terms of knowing the support that she will need I’m the only one that will most probably be able to do that. These are the things that are in the back of your head. But if you’re not looking after your family and stuff like that, well what are you doing?

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Story 3

How will I cope?

Ann’s interview is an account of immersion in grief and loss and an eventual, if tentative, acceptance. It is also about a daughter’s three-fold struggle: to maintain her mother’s ‘personhood’ in the face of her status as a ‘chair fast’ dementia patient in a de-personalised high care dementia ward; to maintain a strong and loving mother-daughter relationship despite her mother’s almost total physical-cognitive-emotional ‘shut down’ in end-stage dementia; and, to maintain her mother’s special place as a valued member of her immediate and extended family. Our interview discloses the devastating impact of her mother’s illness and impending death on Ann’s life as it slowly unravels with the loss of her significant relationship, her ability to work and her descent into debilitating depression. It also discloses her slow road to emotional recovery as Ann sought help, gained wisdom and perspective and came to an understanding of the enduring nature of her mother’s spirit and qualities. Ann’s struggle as the only daughter in a close and loving relationship with her mother was in her dealing with fear, loss and grief and of her eventual resignation and developing strength as she faces up to her next challenge – her father’s dementia.

I’ve always had this fear of losing my mother, of losing my family even before anyone got sick in our family. And I always used to think, oh what am I going to do if I lose my mum? What am I going to do if I lose my auntie? What am I going to do if I lose my dad? I’d just be overwhelmed with fear and I don’t know what brought it about … but I had it. So this was kind of living my fear, losing my mother and living through it; and living it through all these years that I’ve lived through it. You’re grieving. You’re grieving while they are still with you…You know something I got from a book about facing death was the analogy of a pebble in a pond where you drop the pebble in and you get a rim of circles that’s ever increasing and expanding and you can look at it along the lines that my mother had some beautiful qualities about her,

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and she still has you know these beautiful qualities. And I believe she has passed some of those qualities onto me and I will pass those onto my grandchildren, and my grandchildren onto their children and so on. So my mother through those qualities that she had that I … that I’m hanging onto and hopefully, passing on, my mother will live through all these generations. So it’s not like I will lose my mother. There will be part of her in me and in subsequent generations. So that is what I cling onto.

Story 4

How can I keep doing this?

Eleanor is the matriarch of a very large, blended and extended family. Many of these family members look to her for material and emotional support. She cares for her husband who has multiple chronic health problems as well as what she describes as, ‘middle-stage dementia’ (undiagnosed). She has already had to make some ‘tough decisions’ , such as, having her husband’s driver’s license cancelled due to his erratic driving and moving out of the marital bedroom due to his incontinence. She is also the formal kin carer for a close relative who lives with them. What stands out in her interview is her role in a very large, blended family – both as a child growing up and as an adult in her married life - which has shaped how she exists in the world as someone who, in her own words, was always, ‘looking after everyone’. There is a great sense of temporal movement in Eleanor’s interview. She moves herself backwards and forwards in time and place from her current home in in the city where she lives with her husband and her young relative; to her family home in a country town where she went to care for her mother who suffered a debilitating stroke until she died; to her homes growing up as a child where she had to go out at an early age and work with her mother to help care for her many step brothers and sisters who came to live with her parents when her mother remarried. In all of these homes she had as she put it, ‘a job of work to do’. Eleanor’s interview discloses a deep and growing mood of frustration with overwhelming family responsibilities in the context of 113 her own physical and emotional needs as an older woman. It discloses a struggle to assert control over her life in the context of her life’s narrative: a story of looking after everyone else’s needs.

I’m starting to feel everything … everything just coming back on me now and I just said, ‘That’s it’! I need a break; some time out. It’s just from my own experiences and …and I’ve managed to sort of brush it off and I’ve had no choice but to just get back up and do what I was doing. Just get on with it. But I said to my kids, and even my husband, I said, ‘look, when the time comes if I get really sick and I need to I’m going to take off. I’ll move back to my home town. At least I’ve got sisters up there that will look after me; and a brother, and umpteen nieces and nephews. That’s my home; that’s where my parents are buried, my grandmother who reared me. I’ve told them all, If I get that way that I need to have someone with me all the time to look after me, I said, I’m going up, ‘cos I know I can get that support up there. ‘Cos that’s it; I’ve had enough. It’s about time now I need this. I’ve got my blood pressure and cholesterol, the works! And I’m not getting the support I should be getting. And I said to the kids, you know, ‘if it comes to the stage where I can’t handle him [my husband] and I don’t get the support, I’ve got no choice but to put him IN [nursing home care]’, I said. I’ve also got the young one to look after. I can’t keep putting all this pressure on her so young…even though that was done to me when I was her age. But I’m not prepared to keep that going with her.

Story 5

How do I get her to listen to me?

I first meet Vicky at a Carer’s support group. She has brought her sister, Louise, to the group for the second time now. Her sister is struggling to cope with her 114 husband who is chronically unwell and now exhibiting strange, aggressive behaviours. Louise herself is so unwell that Vicky has – with her sister’s permission – offered to be a participant in the study on behalf of her sister. She is the carer’s carer. Vicky dwells in a state of anxiety and concern for her sister. She advocates for her sister’s situation, trying to get her to attend support groups, to access services and to seek nursing home care for her husband. She is overwhelmed by fear that her sister will not survive looking after her husband. While Vicky has learnt the ropes of the system through caring for multiple family members in need, her sister is for the first time, having to manage the family finances, endure her husband’s aggressive outbursts and controlling behaviour, and struggle with the enormity of the situation confronting her. Vicky is caught in a struggle between coming to terms with her sister’s way of dealing with things and her desperate desire to have her see the importance of looking after herself in this situation.

I’m concerned because she’s already had two strokes. She’s far from well. She has a disease that can’t be operated on and the work that she’s got with her husband of fifty four years is going to kill her. And the fact she doesn’t know where to turn, how to access different services until I got her hooked up here… She’s also worried sick ‘cos they might be sending her husband home from the hospital. They can’t do it; they can’t! She can’t cope. I mean he needs twenty four hour care and can’t they see she can’t do it? It took four people at the hospital to lift him!

I’m angry because I feel … I know it’s only minor, but the effort that I made to get her here to this support group. It was such an experience for her to be here. The first few times she didn’t open up you know, but this time, to have heard her talk from the heart… and you could hear a pin drop! I think she sort of understood that these people are all here to learn things and are in the same boat. And she’s a very private person. And to work so hard to get her to this group for her to

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see that there are people who are going through the same things… and if they send him home, she won’t come back.

Each of these existential struggles discloses contesting moods of caregiving which I feel acutely through my increasing immersion in these stories. In Doreen’s struggle, why am I here, we see her both embracing and resisting fate. In Robert’s, what am I to do, we see him struggle with the values he feels are right and with what he feels is possible. In Ann’s struggle, how I will cope, she treads precariously through loss and acceptance. In Eleanor’s, how can I keep doing this, she comes face to face with herself as someone always caring for others and being someone worthy of being cared for. Finally, in Vicky’s crusade for her sister, how do I get her to listen to me, we find her struggling through the tensions and responsibilities of competing family loyalties.

These states of ‘being’, in being a carer, may not be generalizable to each carer’s story, but they resonate deeply for carers in characterising an authentic and universal aspect of the mode of ‘being’ in being a carer. By entering into participants research narratives through the existential struggles being revealed, I find myself moving deeper inside the ‘world’ of caregiving itself.

Part C. The ‘inhabited’ space of the research encounter: what lies between?

Introduction

Phenomenological questioning has a different intention to other forms of questioning. A number of qualitative researchers have pointed to its unique elements (Grace, Higgs, Ajjawi 2009; Kvale and Brinkmann 2009; Van Manen 1990). It is at the heart, about reaching for the core of a person’s experience by allowing the language of its description to extend its meaning. Its primary purpose as a ‘data’ gathering tool is to open up to experience by providing an expansive discursive space for discussion to occur. This invites an inherent complexity as it unveils the ways in which researchers and participants encounter the ‘world’ and raises ethical questions around entering these worlds. 116

In chapters Two and Three, respectively, I probe the issues of reflexivity and intersubjectivity in this study’s existential hermeneutic stance in the context of an Indigenous non-Indigenous research experience. I demonstrate the ways in which the colonial legacy continues to impact in the contemporary public health and research environment. This illuminates the ontological, existential and epistemological questionings for this inquiry which move around the ethical space but do not hone in on specific dilemmas. Yet, the mode of interviewing at the core of the phenomenological enterprise tempts an ethical dilemma.

In opening up to experience researchers invite a depth of ‘disclosure’ that can take participant and researcher into either therapeutic or damaging terrain. Furthermore, there are sensitivities and vulnerabilities which require additional thought and care when conducting research with Aboriginal and Torres Strait Islander peoples in light of the legacy of colonization and researcher mistrust outlined in Chapter Three. Within the inhabited space of a dialogical encounter issues for ethical research practice occur.

The question arises what are we to do with that which has been concealed and is now being revealed?

Ethical questions between private and public worlds

Early on in this chapter I sense that the research is moving into deep terrain. I’ve ticked the ‘ethical boxes’ required for due process, duty of care and informed consent30. Yet, I ask myself whether it is even ethical to be privy to this kind of profundity as a researcher. This question arises because of the nature of what is emerging into the interview space. The openness of the interview guide as questionnaire and the nature of the dialogical encounter make it difficult to use a traditional language of computing benefit over risk.

30 See for example, AIATSIS (2011) Guidelines for Ethical Research in Australian Indigenous Studies http://www.aiatsis.gov.au/research/docs/GERAISjune2011.pdf

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I reflect on the reasons why these participants may be drawn to this study listening for pointers in their conversation. “This is a good conversation. No- one has ever asked me how I feel about what I am facing now with my mother”; “It’s been an amazing conversation so please drop in anytime you are in the area”; “I’ve been to hell and back and if anyone can benefit from what I’ve been through I’m happy to help”; “It’s important that we in our community are talking about these issues. I’ve even volunteered to do the MRI!”

These positive accounts of the interview encounter concur with the experiences of many qualitative researchers using techniques that probe depth in interviewing (Corbin and Morse 2003; Hutchinson, Wilson & Skodol Wilson 2007). Corben and Morse (2003) consider the issues of ‘reciprocity and risk’ for use of the ‘unstructured interview’. They canvass the risk of participant distress against the therapeutic benefit of being listened to in a sensitively handled and ethically driven interview. They highlight the increased agency involved for participants who are able to exert some control over their input; who feel they are able to make a contribution, an aspect that participants in this study talk about in relation to the importance of the dementia conversation in their families and communities.

Importantly, Corben and Morse (2003) write, “the researcher gives a presence and a sense that they are involved in the story (2003, p.342), a presence which I argue is fine-tuned in the hermeneutic and dialogical stance. Other qualitative researchers point to the therapeutic benefits of in-depth conversation as ‘validating’ (Cutcliffe and Ramcharan 2002); and as ‘cathartic, acknowledging, purposeful, empowering and healing (Hutchinson, Wilson and Skodol Wilson, 2007).

In drawing attention to the ambiguity of conducting ‘lived experience’ research (see Chapter One: whose experience and meaning is this?), this study finds a parallel in Seidman’s (2013) template for interrogating ‘lived experience’ research through in depth phenomenological interviewing. Seidman challenges the researcher to think deeply about ‘why phenomenological questioning?’; ‘the nature of human experience as temporal and transitory’; ‘the emphasis on meaning and context’; ‘the value of ‘lived experience’ research rather than

118 theory driven research’, all themes which underpin the nature of the hermeneutic questioning in this study and its mode of reflexivity.

Indeed, within these newer spaces of dialogical research encounters, Redwood and Todres (2006) interrogate the very procedural language of risk and benefit itself and challenge researchers to employ ‘an ethical imagination’. Moving closer to the phenomenological enterprise, the authors propose opening the space for dialoguing about ethics in qualitative research as a process of ‘imaginative redescription’. Their argument for the ‘ethical imagination’ to build on ‘the safety net of more procedural ethical guidelines’ (2006, p. 6) reflects a language and conception better suited to the range of interpretive approaches in contemporary qualitative research.

In this research environment, Redwood and Todres (2006) liken the researcher to a ‘mediator between private and public worlds’, suggesting that it may be useful to (re)view the writing of these worlds for different worlds (p.3). The ethic of care is thus conceived of here, in their words, as both ‘caring for a scholarly tradition of bringing something new into the world’, and, ‘caring for respondents in honouring the integrity of their experience’ (p. 7).

This idea has deep ethical salience. In the ethnographic fieldwork of Carolyn Ellis, she draws on the concept of ‘relational ethics’ as ‘ethics of care’ to highlight the values of ‘mutual respect, dignity and connectedness required between researcher and researched’ (Ellis 2007, p.4). Yet, Ellis’s interrogations of her own ‘relational ethics’, show the murky boundaries that nevertheless persist between her and those who share their stories in a publication space. While she conducted herself with appropriate ethical comportment her research went from therapeutic to damaging terrain when it entered the public domain.

For this study, I am mindful that Aboriginal and Torres Strait Islander peoples fall under the rubric of the ‘vulnerable category of research participants’, and so additional care in terms of immediate and long term impact of research needs to be taken. The specific issues of holding sacred the confidentiality of participant experience - despite name changes, certain identifying detail changes and

119 informed consent – requires additional safeguarding in this study because of the following:

 The small numbers of participants interviewed from reasonably tightly knit and well-connected communities

 The fact that members of the community know important and personal details about each other, in other words, they know each other’s stories

 The risk of their being able to be identified even by those loosely associated with the community

 The possibility of distress for family members and others in the community that this might cause

 The importance of honouring the research relationship that has been built up and will be maintained in future work.

For these reasons, the ‘ethic of care’ that I undertake for (re)viewing the writing- publishing of these worlds for different worlds means that this thesis will not enter the public domain without selected participant stories being removed. For the purposes of journal publication this will not pose a problem as the level of detail required will not extend to detailed participant accounts.

I return to the question that I posed in the introduction to this chapter, namely, what are we to do with participant stories or that which has been concealed and is now being revealed? This brings me to the real value and significance which occurs with the kind of depth that arises from the profound nature of phenomenological interviewing. The ‘ethic of care’ that arises here is to use this new and deep knowledge to develop the attributes and comportment for working with the complexity and promise of the Indigenous non-indigenous research space. To bring to this space as Corbin and Morse (2003) describe, ‘the presence of the researcher’, capable of navigating private and public worlds; visible and invisible experience and moving in and out of different experiential and ‘cultural worlds’.

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The phenomenological questionnaire

For this inquiry, I use a semi-structured interview guide to gather data. Kvale and Brinkman (2009) describe its purpose for garnering descriptions of the ‘life-world’ of participants so as to interpret the deeper meanings of the phenomena under inquiry. Fran Peavey’s conceptualisation of ‘strategic questioning’ formed the guide to the development of the questionnaire schedule for the study’s participant interviews31. I employed Peavy’s concept of using ‘different families of questions’. In Peavy’s lexicon, these include, focus questions, observation questions, feeling questions and visioning questions, to which I added, experiential questions and pragmatic questions. An example of each of these types of questions can be found in Table 2. The study’s interview guide can be viewed in Appendix 2.

A phenomenological questionnaire artfully straddles the distinction between a study’s research questions and its underlying research question. As Jankelson notes, ‘it is the research question which tends to drive the interview more than the prepared questions’, giving it its phenomenological orientation (Jankelson 2005, p.37). Van Manen describes the phenomenological, hermeneutic enterprise as having a ‘twofold character’, that of ‘concreteness’ and that of ‘essential meanings’ (Van Manen 1990, p. 39-40). For this research inquiry, this is the distinction between the acts of caregiving and the ways in which people provide care, in other words, what it means to be a ‘carer’. Likewise, it is to appreciate the distinction between what is involved in conducting research and what it means to be a researcher.

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Focus question This gives focus to the interview and Q: Can we begin by talking about what identifies each family’s current situation. you are most concerned about now in It clarifies the point of departure for the relation to your [family member]? interview Observation question Q: Can you take me back to the time This facilitates concrete description of when you first started noticing your what has been noticed, seen and heard [family member] was starting to become unwell or that something didn’t seem right? What happened? Feeling question Q: Have you had to make any big This question alerts us to the bodily decisions concerning the care of your sensations and emotions which are [family member]? How was this for you? present and may be re- activated when Would it be OK to hear about what you recalling experiences had to go through to make a big decision? Visioning question Q: What do you think of when you think This question invites a ‘dreaming’ of what about providing perhaps the ‘ideal’ or is desired for them and their family ‘right’ kind of care for your [family member in relation to their care member]? (regardless of whether it happens or not) Experiential question Q: Can you tell me about a time or times This question evokes the quality of the when you and your [family member] experience of care-giving itself enjoyed yourselves together? What makes it so enjoyable?

Pragmatic questions Q: Can you help me understand more about what is actually involved on a day to day basis in caring for your [family member]? What kind of help is needed?

Table 2: Types of interview questions used in the questionnaire guide

In Heideggerian parlance, this is the distinction between the ‘ontic’ and the ontological dimensions of experience, with one layer of the inquiry paying attention to the acts of caregiving; and the other, with what is the language of

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‘being’ in being a ‘carer’. To this end, phenomenological interviewing invites a kind of conversation that Gadamer describes as a ‘genuine dialogue’ but ‘not the one we wanted to conduct’ (Gadamer, quoted in Moran 2000, p. 249). While I began this study with some expectation that the subject of caregiving, service use and need for services would dominate the interview conversation, what actually transpired is that our dialogue entered into ‘invisible’ dimensions of experience and profound terrain. It revealed the very struggles of existence and meaning itself. It opened up the relational tie between us.

The encounter with meaning: the nature of inter-relational experience

The idea of ‘gathering data’ takes me to thoughts of a formal research meeting. As it happens, I am privy to a much closer world of experiencing in this community based research. I drop people here and there, as I live and work close by. We take extra underwear to an elderly mother in hospital. We pick up relatives. We talk in the car and over a coffee. I drop in on a group that is a significant support in a respondent’s life. She wants me to see something they are making there. We chat together. I talk about my background, heritage and grandparents. ‘Now you are sharing your stories with us’, my respondent quips, and I glimpse myself from the gaze of the researched. The ‘substantive interview’ too, takes place in real life and real time, mostly in respondents’ homes. Family members drop in, the telephone rings, we make tea. We talk. Conversation enters into these informal spaces between ‘normal living’ and the ‘professional interview’, the latter being a zone where consent forms are signed and I set out with an interview guide32.

I pivot around the respondents’ narratives. I ponder where I am placed in this research relation in what the qualitative researcher, Michelle Fine calls, “the contradictions that percolate at the ‘Self-Other’ hyphen” (Fine, in Denzin and Lincoln Eds.1998, p.130). I recognise that the distance between me and participants in this study is ‘softened’ to some extent by what Jones and Jenkins

32 Three interviews were conducted in respondent’s homes; one took place at my workplace; and one at a community centre. These locations were chosen as per participant preference 123

(2008) characterise as ‘the mutual social ideals of equality’ (p. 474). For this research, I am talking about a commitment to aged care and dementia and respite services and a ‘language’ of care that resonates with the experiences of Aboriginal carers in their concern for older family with cognitive decline and dementia.

Despite the ‘self-other hyphen’, ‘something’ else seems to be happening here. ‘Seeing things anew’ is also happening in this ‘between’ space. I consider an analogy with the writer, Siri Hustvedt’s, observations of ‘the space between the analyst and the person being analysed’ as a place of ‘emotional truths and narratives being remade’ (2012, p.159).

I tune into the emotional timbre of the telling. These stories are recounted as moods of disruption, despair, dread and hope as family members face the decline of their loved ones. I immerse myself in these narrative tales. In one, Doreen describes the first time she saw her mum in a nursing home (Doreen’s words are in italics; my words are in bold italics).

Well, when I came through the lift all I could see was mum sitting at the table and it was her back … I don’t know what it was that I’d seen but it was something about her back…I didn’t like it. I did not like the place and I went in and I signed some papers and I came back out and I just … don’t know … I couldn’t sleep and the next morning I rang them up and I said, I’m coming to get mum.

The phrase ‘seen from the back’ jolts me into my own recollection. Something from my own experiencing with my grandmother in the nursing home all those years ago is comprehended in Doreen’s description. I find myself back in the nursing home with my grandmother now. I see clearly the narrow, slump of my grandmother’s frail shoulders; her thinning grey hair, as seen from the back, in the nursing home. She could be, as Doreen says, ‘any poor old lady in that place’, not my grandmother. I am moved to speak. She doesn’t have a story in that place, I murmur. Doreen nods her head in emphatic agreement. No they don’t, she says, giving me permission to say what we both recognise to be true.

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A horizon of intelligibility starts to emerge in relation to what is happening in life’s temporal unfolding. Van Manen refers to this as the ‘rich domain of the unspeakable’ as it encompasses aspects of historical experiencing that live in, and through the body, but which, at the same time is invisible (1990, p.113). It is also in Van Manen’s account, not easily visible in our own everyday but ‘emerges in the words of the other’ (p.113).

Doreen continues: And like with mom and her culture, they probably don’t understand…what aspects are you thinking of? Well, what I mean is how she feels inside herself, in her heart and in her soul and in her whole body about who she is, and where she comes from, and all the things that’s happened in her life…

Our conversation continues and moves into a deeper level of exchange. Sometimes we just sit with this sadness. I start to see the connections in Doreen’s research story. While her mum is living in her home surrounded by family and ‘telling the family stories’ she is still valuable to us. Her mind is perfect. She tells the family stories. In this community of oral tradition and the valuing of social connection through ‘yarning’, the recall of long term memory in dementia is valued. It is the nursing home that de-stories her as a place where she can no longer speak the family stories and is no longer heard. In this space, she enters ‘dementia’, which is also to say that she enters a space of withdrawal from family. Nursing homes don’t suit me or my mum because of her sharp mind, her perfect mind, I recall Doreen saying in our first telephone exchange.

Yet, Doreen is in a double bind. She cannot manage the twenty four hour care her mum now needs. She tells me, ‘It is impossible because her body’s so weak but her brain’s so knowledgeable and strong. She doesn’t want to go into that state of dementia I know that; and that’s what’s going to happen. You can see it. Because family’s not with her and she just lies in bed; or sits for a while and goes back to bed. And I’m really scared of her losing her mind’.

I see also the connection with my own story and the way that, as with Doreen’s mother, my grandmother’s ‘history’ comes to inhabit her cognitive decline. The encounter with my grandmother in the nursing home – the memory that opens

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Chapter One – takes on a new meaning now. Powerful reminiscences are resurfacing. I revisit strong feelings of disturbance during a visit to her when she reverted to her mother tongue and to states of fretfulness, warning me to ‘hurry, leave urgently as the police were coming’. As we were living in insurrectionary times in Apartheid South Africa during the nineteen eighties, her anxiety did not strike me as particularly out of context at the time - as indeed there was a police and military presence on the streets - but its intensity did seem severe and out of proportion to her situation. As I listen to Doreen’s words, ‘… who she is, and where she comes from, and all the things that’s happened in her life’, it dawns on me that what my grandmother was experiencing was the disorientation and confusion that characterises the onset of dementia. She was reverting to the language and memories of her formative years as a young woman. These intense memories evoked by persecution, fear of annihilation; memories of her parents and younger brother who perished in the gas chambers of Auschwitz, and in her case, ultimately escape from Eastern Europe on the brink of the Second World War – the seminal historical experience of her generation – had resurfaced in a fragmented and embodied form around sixty years later as a woman in her mid- eighties in a nursing home.

I talk to Doreen about my grandmother in the nursing home all those years ago. She intuits my own embodied disruption and comments on the circular nature of the research I am involved in. Naturally if you’re doing research into growing old it’s going to go back to your grandmother, so you’ll need to fix it, she tells me, heal yourself. Here again I feel the presence of a distinctive historical narrative of trauma and the need for healing and I am profoundly moved by the effect of its impact.

What this brings to mind is Guignon’s (2005) description of ‘what emerges into presence in a temporal and historical unfolding’ which I cite in Chapter Two to explain the weight of the hermeneutic stance for this inquiry. It is this dimension of experience that gives meaning to Doreen’s words when she talks about needing to know what I feel inside; to reach for what it means to be a carer for her mother in light of what she expresses as all the things that’s happened in her mum’s life. It is her attempt to maintain her mother’s ‘story’, bringing to mind William Randall’s call for the importance of ‘narrative care’ in 126 ageing and dementia (2009, p.323). Doreen is describing what it means to ‘care’ for her mother and honour her story in the meaningful horizon of history and tradition.

It is in this space of experience as it is lived where meaning resides, and it is from this space that meaning discloses itself. Jones and Borbasi describe this as the ‘ontological basis for knowledge’ and it is this that constitutes the ‘truth’ of the research (Jones and Borbasi 2003, p.87). Further, the significance of the dialogical encounter lies in producing ‘understanding as experienced’, in other words, a bodily experience of understanding (Moran 2005, p. 249).

In the living space of the interview encounter, Doreen and I find the words that give expression to our discomfort. It is a truth arising not solely from Doreen’s experience, nor from mine, but from the living space between us, an occurrence that Hustvedt (2012) writes about to describe the ‘dialogical atmosphere’ of a reconfiguring narrative (p.177). Doreen’s use of the phrase, ‘when I saw her from the back’, and my use of the phrase, ‘she had no story in that place’, struck a deep chord and brought both of our experiencing into visibility. Prior to this, Doreen was compelled to act on her ‘felt sense’, by removing her mother from a nursing home, despite having no words to explain why. For my own part, it was the trigger to ask troubling questions about the presence of ‘dementia’ in my own family, despite this never being named.

In this dialogue, Doreen and I ‘faced each other’ in a kind of ‘temporal presence’33. In our dialogical encounter something significant came to be disclosed. This brings to life Gadamer’s conceptualisation of language, ‘as the medium in which understanding is realised’ (Moran 2000, p.248). My research question has come to ‘inhabit me’, a phenomenon Van Manen (1990) sees as the hallmark of phenomenological questioning. It is through this ‘inhabited space’ that I come to ‘see’ my grandmother’s ‘dementia’, and as with Doreen’s mother, this is the first time it has been named.

The Other: Studies in the Social Ontology of Husserl, Heidegger, Sartre and Buber 127

Summary and conclusion of the chapter

This chapter addresses the nature of disclosure research as a genre of research which draws from Heidegger’s notion of “world disclosure”. It examines the nature of its kind of “data” and what sensibilities, attributes and stance is required for this kind of inquiry. I enter the ‘world’ of family carers through the existential struggles which disclose the manner in which these caregivers ‘dwell in concern’ in the dementia experience. These existential struggles disclose the contesting moods of caregiving and identify where the carer’s struggle is located. The chapter explores how meaning is made in the interview encounter and brings to light the relational significance of meeting in dialogue.

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Chapter Five

Narrative display: disclosing and making ‘worlds’

Where do you begin with countless hours of profound conversation? What does it mean to ‘analyse’ this kind of experience? I read and re- read countless tomes in genres of qualitative research and come back to the same intuitive feeling that what I am attesting to is the disclosure of a world. At first, I attempt to make sense of this large volume of narrative ‘data’ by disassembling the text contained in the interview transcripts into ‘clusters of meaning’, as in much thematic analysis of qualitative research. Yet, I find this analytic approach does not quite capture what is unfolding here. There is a domain of experiencing coming from an ‘invisible’ place. It is captured often in mood. It is all around me, signalling its presence. How do I bring the ‘invisible’ to life in a language of scholarship?

Introduction

In this chapter, I consider how ‘lived experience’ both discloses and makes worlds in a single movement (Bohman 1994). Language and ‘mood’ play a pivotal role, as they express the manner of our ‘being-in-the-world' and manifest the way we interpret, articulate and action our world, even when as Harman writes ‘words themselves are not used’ (Harman 2007, p.143). Language thus conceptualised is an expression of both ‘being’ – it says something about the nature of our existence - and the verbal, artistic and living expressions of beings themselves. Likewise, as Dreyfus and Wrathall write, “moods make it possible for us to encounter entities within the world by determining how those entities will matter to us” (2005, p.5).

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In this chapter, I use a variety of ways – an artwork, tangible textual description, and the use of a colloquial idiom - to disclose the meaningful world of caring, ageing and dementia in Aboriginal families. In this process, what I also disclose is the manner of my own researcher comprehension as it progresses from its ‘everyday’ understanding.

My discussion of ‘world disclosure’ draws from Sandra Bartky’s account of Heidegger’s three ways in which ‘a world’ is disclosed to us (Bartky 1979). Bartky summarises this three-fold Heideggerian conception very concisely. She tells us, “Heidegger uses the term “world” in at least three different ways: it can refer to an ultimate totalizing horizon, to a concrete life-world or to an historical epoch” (1979, p.213). This three-fold conceptualisation of the concept of ‘world’ - denoting in this inquiry the way individual human beings (family carers of Aboriginal elders) ‘dwell’ in their ‘world’ - can be usefully and pragmatically applied to the notion of ‘cultural worlds’, that is, to the way of ‘being’ in ‘being- in a world’ (Dallmayr 2009). In disclosing such a world we encounter what Kompridis, describes as an ‘ambiguous process’: on the one hand, ‘we disclose already interpreted worlds we find ourselves in’; on the other, ‘we disclose their hidden or unthematised dimensions’ (Kompridis 1994, 29).

In Part A of this chapter, I work with the idea of ‘an ultimate totalising horizon’ by drawing from a painting depicting dementia in the brain by the Aboriginal artist, Mary Jane Page, from the La Perouse community in Sydney34. Through an exploration of this painting – an artwork as ‘data’ - I explore the way in which a ‘world’ with dementia is disclosed to us. This is a world of referential meaning where everything has significance in relation to its constituent parts and to the totality of its meaning. It arises from a time-honoured conception of Aboriginal ‘being-in-the-world’, a conception that frames much of Aboriginal artistic expression.

34 Mary Jane Page is an Aboriginal artist from the La Perouse community in Sydney. She was commissioned by the Koori Dementia Care Project (KDCP), a component study of the Koori Growing Old Well Study to depict dementia in the brain from her perspective as an Aboriginal artist. See, Koori Dementia Care Project (KDCP) – Final Report 2013. Information about the KDCP can be accessed at: http://www.neura.edu.au/koori-dementia-care-project/about

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In Part B, I reveal the second way in which ‘a world’ can be said to be disclosed: through faithful description of the ‘concrete world’ in which the participants in this study care for and face up to their loved one’s decline and mortality. I use elements of phenomenological (Van Manen 1990; Jones and Borbasi 2003; Grace, Higgs and Ajjawi 2009), hermeneutic (Van Manen 1990; Loftus and Trede 2009), existential-embodied (Perl 2004) and narrative (Polkinghorne 1998; Gannon 2009) writing to disclose my understanding of who these carers are in their relationships of Care and care giving35. In the sense however, that this section is aimed at revealing what the experience of caring for an older, Aboriginal person ‘in dementia’ is like, the emphasis is on writing phenomenological descriptions of this life-world.

Finally, in Part C, I disclose something of the ‘historical, epochal’ nature of the times we are living in, which is also to ask, what does it mean to be an Aboriginal caregiver in a contemporary world? In this section, I draw on the use of a colloquial expression used by a participant as a metaphorical means of revealing the dialectic of tradition and change at the core of the experience of caring, ageing and dementia for Aboriginal families in twenty first century Australia.

Fundamental to this analysis, is the understanding of the concepts of ‘world’ and ‘world disclosure’ in Heidegger’s thought.

The concept of ‘world’

Heidegger’s concept of ‘World’ refers, as Hubert Dreyfus explains, to a ‘contextual background’ against which “every kind of directedness takes place” (Dreyfus1991, p.88). In other words, it refers to the way in which we are oriented to the world. In Heidegger’s concept of ‘world’ in Being and Time, Dreyfus outlines four senses in which the concept of ‘world’ can be distinguished

35 The English term, Care, derives from the German word, ‘Sorge’, which in Heidegger’s vocabulary, denotes ‘dwelling in a set of concerns’ as the ontological structure of existence itself. Caregiving can be understood as acts of providing care, which for Heidegger denotes the ‘ontical’ dimension of human experiencing. See chapter two, part A, for a full explanation of these Heideggerian terms 131

(1991, p.89-91). These encompass meanings of ‘world’ to denote all that is ‘included’ in ‘a world’ and that denoting ‘involvement’ in ‘a world’ (p. 89). It is in the latter sense that I work with the concept of ‘world’ in this inquiry. The significance of this use of ‘world’ lies in its importance for human beings as the meaningful horizon of their ‘being’, in ‘being-in a world’. This understanding is characterised in Heidegger’s vocabulary as, ‘The Ontical-Existentiell’ sense of ‘world’ (Dreyfus 1991, p.89-90), which in this study, refers to the ‘world’ of the family caregiver in caring for an older, Aboriginal person with ‘dementia’. Certainly, integral to this sense of world for the human being, is liminal (or perhaps more conscious) awareness of what Dreyfus describes as, ‘the background of more originary transcendence’ (p. 88).

Aboriginal spirituality contains this originary ‘presencing’ in the form of ‘first stories’, ‘origin stories’, or ‘creation stories’. Elements of these ‘origin stories’ make their way into the conversation with some participants, however, this is not the focus in this study’s use of the term ‘world’36.

There is a further level of explanation that Dreyfus draws our attention to in Heidegger’s conceptualisation of a given mode of ‘being-in-the-world’, and that is, the distinction between what is referred to as, “the ‘public’ we-world” and “one’s ‘own’ closest (domestic) environment” (p.90). The important point that Dreyfus asks us to grasp, is that the ‘intelligibility’ of our own domestic world has no meaning outside of the ‘prior existence of a shared public world’, such that, there is no concept of a ‘private subjective world’ at all (p.90). This constitutes Heidegger’s conception of ‘being-in-the-world’ as the existential structure of ‘being’ itself.

In the philosopher, Christina Lafont’s words, ‘cultural traditions precede individual subjects, who grow up into them’ (Lafont 2005, p.272). We recall from Chapter Two that understanding begins in ‘tradition’, which is also a way of saying that it begins in our ‘everyday’ understanding. It is against this referential context of ‘ordinary, everyday understanding’ that the meaningful nature of participant – and indeed researcher - experience is disclosed.

36 See for example, A Place for Strangers: Towards a History of Australian Aboriginal Being. Tony Swain, Cambridge University Press, 1993 132

The concept of “world disclosure”

The concept of ‘World Disclosure’ is at the heart of Heideggerian philosophy. It denotes the type of sense-making that produces an ontological ‘truth’, that is, a notion of what is there. It arises in the referential context of everyday living, or the ‘public world’, as already alluded to. Numerous scholars have pointed to the significance of the ‘public’ world in Heideggerian thought. Theodore Schatzki, in examining the concept of ‘the social’ in Heidegger, argues that in our ‘everyday selves’, things show up as ‘something’ for ‘being’ (Schatzki 2005, p.238). Schatzki notes, ‘the “there” is a space of disclosure’ and indicates ‘the possible ways in which things might show up’ (p.238-9).

For the Australian scholar, Jeff Malpas, the significance of ‘disclosure’ as a concept signifies the ‘simplicity’ and the ‘complexity’ of Heidegger’s thought of ‘being’. Malpas’s explanation is worth quoting for its clarity: “Heidegger’s thinking is an attempt to address the question, and the questioning, of being in a way that remains true to being as such, but which is also true to the belonging together of being and beings, of presence and what is present, of being and human being” (Malpas 2006, p.306). What shows up as significant, is precisely what matters to these human beings - participants in the study – in their ‘ordinary, everyday’, but which somehow also speaks to questionings of what it means to encounter oneself and others in a ‘horizon’ of Aboriginal ‘being-in-the- world’, or what Tony Swain refers to as ‘the ontological field of view’ (Swain 1993, p.3). This is a fundamentally hermeneutic approach, as it allows us to grasp what it is to be human in the world, as questioning beings. As Christina Lafont writes, “this understanding is what allows Dasein to grasp the distinction between being and beings and thus to have an understanding of itself, the world, and everything that can show up within the world” (Lafont 2005, p.268).

In Sandra Bartky’s (1979) account of Heidegger’s modes of world-disclosure there is a ‘critical moment’ in the disclosing of ‘a World’. In Bartky’s words: “The Being-event takes place when there occurs an unveiling of beings (das Seiende), a disclosure not only of what beings there are but of how these beings are, in other words, of the manner of their existence and of their relationships to one another. When there occurs unveiling of beings, of what-there-is in its totality, a

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“world” may be said to have happened” (p. 213).In Bartky’s conceptualisation, disclosure is ‘ontological truth’ and the impact has something of a revelatory quality.

By contrast, the contemporary philosopher, James Bohman (1994), offers a more pragmatic interpretation of ‘world disclosure’, seeing its function in ‘relevance’ rather than ‘truth’ (p. 95). He interprets Heidegger’s concept of world disclosure as, “neither equivalent to truth nor as independent of truth, but as a condition for it” (1994, p. 87). The salient point which Bohman makes is this: “Disclosure makes something relevant against the background of current beliefs and practices” (p. 87). This is a fundamentally Heideggerian proposition, for as Heidegger writes in Being and Time (1962), “our analysis takes its departure from the traditional conception of truth, and attempts to lay bare the ontological foundations of that conception” (p. 257; s214).

In Critique and Disclosure (2006), Nikolas Kompridis argues that this aspect of Heidegger’s scholarship, namely, what is disclosed against a background of beliefs and practices, is what gives the notion of disclosure its ‘normative and critical significance’. This is because in Kompridis’ argument, Heidegger’s world-disclosing arguments are ‘forms of critical reasoning’ with the potential for something new being realised in the space between the ‘normative’ and the ‘critical’ (p. xii). Kompridis redescribes Heidegger’s notion of ‘disclosure’ as ‘reflective disclosure’ to describe the process of renewal that stems from disturbance or crisis and delivers ‘new meanings, possibilities and practices’ (Kompridis, p. 36). It occurs, in Kompridis’ argument, in the space between ‘receptivity and activity’ (p. 34), a process James Bohman attributes to a mode of being itself, which he describes as ‘the contrast between a disclosive relation to the world and a rigid one’ (Bohman, p. 84).

In a similar vein to Kompridis’s account of ambiguity in ‘world disclosure’, the paradox that Bohman asks us to consider is this: Bohman (1994) writes, “how is it that we can experience new facts or embrace new values, if the world is experienced as already interpreted within a shared cultural framework?” (p.83). Bohman answers his rhetorical question, “on the one hand, a language or a culture discloses a “world” in that it already shapes how we see and question

134 reality through its habitual categories and presupposed practices”; and, “on the other, the world is disclosed to us in new ways, as when new and successful metaphors connect disparate experiences or objects never before brought together” (p.83). This idea leads Bohman to the thought of disclosure as ‘a certain way of talking about cultural change’ (Bohman p. 83). Following this line of argument, ‘disclosure’ is the ontological happening out of which a notion of ‘truth’ can unfold, encompassing tradition and innovation, tension and possibility.

In the remainder of this chapter, most notably in part A (the artwork as a ‘totalising horizon of ‘being’’), and part C (the idea of ‘historical, epochal disclosure’), I take up Bohman’s idea of using an artwork and a colloquial turn of phrase, respectively, as a metaphorical means of bringing experiences and events together in ways that unveil new and different insights and meanings for understanding and interpreting the meaningful ‘world’ of caring, ageing and dementia for Aboriginal family.

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Part A. World disclosure as a ‘totalising horizon’

‘The Brain and Dementia’, Mary Jane Page, La Perouse 2012

Introduction

The idea of ‘being’ in Heidegger’s philosophy is one of a ‘being-in-the-world’. As beings in the world, ‘world’ is an ‘ultimate totalising horizon’; by which is meant, it is a world of referential meaning in relationship to its component parts and in its workings as a complex whole. This topological perspective, in the sense of a relationship between linked elements, is attuned with ideas of both ‘place’ and ‘space’ as concepts for understanding the idea of ‘being’ from an Aboriginal ontological perspective (Swain 1993). In relation to Western philosophy, Jeff Malpas’s analysis of Heidegger’s notion of ‘being-in-the-world’ as ‘being-in-place’, is to underscore the importance of the idea of ‘being-there’, that is, to be already situated in a world, in both its tangible and intangible senses (Malpas 2006; Malpas 2008).

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Similarly, in relation to Aboriginal ontology, the concept of ‘space’ in the work of the Aboriginal architect, Kevin O’Brian, illuminates notions of presence and absence; visibility and invisibility that define Aboriginal conceptions of ‘being- in-place’37. In the notes to O’Brien’s architectural exhibition, Sep Yama: Finding Country, to the 13th Venice Biennale, he writes: “Sep Yama Finding Country is an Idea. It is an aboriginal position on space in Australia. It is also a revealing and concealing of worlds. Sep Yama comes from the Meriam language of far North Queensland: Sep means ground; earth soil; Yama means not visible to you. ‘Country’ is an Aboriginal belief. It is a belief that binds groupings of aboriginal people to the place of their ancestors, past, present and future. It understands that every moment of the land, sea and sky, its particles, its prospects and its prompts, enables life. It is revealed over time by Camping in it and guides my way into architecture38.

The distinction O’Brian makes between Eurocentric concepts of landscape in Australia as opposed to Aboriginal notions of Country is pertinent to this discussion, for as he observes, while ‘empty landscapes evoke space, they do not necessarily evoke ‘Presence’ or ‘Being’’. ‘Country’, on the other hand, connecting Aboriginal people to ancestral beings and towards future survival, as well as, the spatial connectedness and relationship between humans, non-human entities and elements in the landscape, is an Aboriginal mapping of ontological significance. One enters into this space of ‘being’, as in O’Brien’s experience, through “camping in it”, a process similar to Polanyi and Gendlin’s notions of ‘indwelling’, which I discuss in Chapter Four. There is a similar quality of attunement in O’Brien’s immersive experience of ‘camping in it’ and Heideggerian language. For example, in the introduction to Heidegger’s, Poetry,

37 I first learnt of the work and ideas of the Aboriginal Architect, Kevin O’Brian, by attending a lecture at the University of Sydney in the Thursday Night Lecture Series held on March 14th, 2013 in the Faculty of Architecture and the Built Environment. O’Brien spoke about the concept of Finding Country and the Exhibition, ‘Sep Yama Finding Country’, which was presented at the 13th Venice Biennale, 2012. I refer the reader to the following links regarding O’Brian’s ‘Aboriginal Architecture’ from which I draw my information (accessed: 5 May 2013); http://www.abp.unimelb.edu.au/events/sep-yama-finding-country; My discussion of O’Brien is also drawn from: http://koarchitects.com.au/; and, http://designonline.org.au/content/finding-country/ 38 This language is reminiscent of ‘connecting and opening us’ to the ‘life in which man dwells’. See, Albert Hofstadter’s introduction to Heidegger’s, Poetry, Language, Thought (1971) 137

Language, Thought (1971, p. xviii), Hofstadter writes of, “the central living presencing of the being of the world, and of men and other beings in the world”.

As part of my own attempts to engage with Aboriginal places and spaces, I attend the exhibition, ‘Yiwarra Kuju:The Canning Stock Route’ at the Australian Museum in Sydney in 201239. In this exhibition, the Canning Stock Route was traced in Western map space but it was shown as a map of ‘Dreaming tracks’ superimposed over Alfred Canning’s own map. In this dual spatial mapping of both landscape and Country, we find again the interplay of visibility and invisibility; between revealing and concealing.

In the efforts to secure a viable stock route for remote regions of the Kimberley, in Western Australia, at the turn of the twentieth century, the social life of numerous Aboriginal language and cultural groupings were rendered invisible and irrelevant. The collection of paintings - now known as the Canning Stock Route - by Aboriginal artists from that Country, disclose the many places where family and Country were disrupted through stories of survival and resilience. The exhibition, ‘Yiwarra Kuju:The Canning Stock Route’, around a century later, is an attempt to re-disclose this visibility and to reinterpret this history in light of a different narrative of ‘being in place’.

With this background in mind, I turn to Mary Jane Page’s artwork of the brain and dementia. In the Artwork, we find disclosed a number of synergies with Heidegger’s concept of ‘World’ as an ‘ultimate totalizing horizon of being’.

‘The brain as place’: the totalizing horizon of Aboriginal ‘being-in- the-world’.

A ‘totalising horizon’ is a language of intelligibility that is inherited through the proverbial ‘mother’s milk’. It makes sense as a system of communication which holds relationships with kin and family, with ancestral beings – in both their human and non-human form – and with ‘being’ in its temporal unfolding. In

39 I refer the reader to the Exhibition website which, in addition to the exhibition itself, informs my discussion: http://www.nma.gov.au/exhibitions/yiwarra_kuju/home. Accessed 5 May 2013 138

Heidegger’s book, Poetry, Language, Thought (1971), he focuses on what it means to ‘dwell’, as ‘beings-in-the-world, and advances a number of persuasive arguments regarding the ontological function of ‘works’ - of which the Artwork is one - to disclose the nature of ‘being itself’.

Firstly, Heidegger in his book, Poetry, Language, Thought (1971), argues that in discerning the significance of the Artwork as a ‘work of being’, we must look to the ‘origin of the artist, for the two cannot be separated’ (p.34). As a local Aboriginal artist and actively engaged community member, Mary Jane Page is, to quote Heidegger, ‘sure of her world’ (p. 34). By this is meant, that the painting speaks to how she encounters her world. Feeling and mood are invoked in an embodied way in this encountering. For Aboriginal community (‘those inside the ‘Cultural world’’) this is a pre-reflective experience. While the painting may invoke a mood of quiet contemplation for those within the Culture, it does not require examination. For those ‘outside of the ‘Cultural world’’, what Heidegger is arguing, is that ‘we be brought before the Artwork’ so that its significance in disclosing a ‘world’ can be revealed. This is the artwork’s function: ‘to ‘manifest’ the world of the Culture to the viewer of the painting’ (Dreyfus, p. 409).

When the Artwork, ‘Trek of hope for a dementia cure’, was first shown in the building, Neuroscience Research Australia40, its ‘disclosive’ significance was precisely in catapulting scientists and the non-Aboriginal lay person into a ‘world’ different from the ‘ordinary, everyday conception’ of what the brain and dementia looks like. Heidegger captures this process beautifully when he writes, “In the vicinity of the work we are suddenly somewhere else than we usually tend to be”. (1971,p.35). Whereas, in the bio-medical world of neuroscience research, the brain is ordinarily viewed and comprehended as a segment under a microscope, or as an image on an MRI (magnetic resonance image) scan, or manifested in the measurement of an unsteady gait observed and documented by laboratory experts, the ‘effect’ of this Artwork is of a brain presented in the

40 Neuroscience Research Australia is the place where the Koori Growing Old Well Study (KGOWS), and its study component, The Koori Dementia Care Project (KDCP), has been housed and administered. Apart from these studies with a dedicated Aboriginal focus - within a broader ‘ageing and neurodegeneration’ research stream - the work of the Institute is geared towards inquiry in areas of the brain and the nervous system within a biomedical research and practice paradigm. 139

‘style’ of another ‘world’, thus manifesting a ‘horizon of being’ true to a different cultural conception. Furthermore, the totalising horizon by which the brain and its functioning is comprehended in the biomedical, bio-scientific paradigm, takes in also, the apparatuses and actions which gives the cultural world of Neuroscience Australia its intelligibility. In other words, the microscope under which the brain slice is viewed; the scanning machine which is put to work in revealing the inside of the body; and the appliances and apparel used by technicians and professionals to observe, monitor, assess and evaluate the brain and its functioning.

Heidegger draws our attention to a further point concerning the ‘disclosive’ appeal of the artwork, namely, its allegorical and symbolic nature in ‘manifesting something other’ (1971, p. 20). For while non-Aboriginal viewers of the Artwork – given the ubiquity of Aboriginal art generally - appreciate the way in which the representation of the brain and dementia is depicted in the aesthetic of Aboriginal cultural expression, this in itself, fails to disclose the ontological significance of the meaning of the artwork as a place of ‘existential ground’ – an argument to which I will shortly return. In other words, the painting is not just to be valued for its appeal as an aesthetic piece of work. In the idea of the artwork as symbol and allegory, Heidegger asks us to think about, “what is at work in the work that allows this process to be” (1971, p. 36), in other words, what is it that allows us to see disclosed something about what it means to be in this ‘world’.

In the section that follows, I discuss Mary Jane Page’s Artwork as a ‘totalising horizon’ to consider what it means to be Aboriginal in a world with dementia.

‘Trek of hope for a dementia cure’

The Artwork, ‘Trek of hope for a dementia cure’, was commissioned by the Koori Growing Old Well Study for its knowledge translation and capacity building component study, The Koori Dementia Care Project (KDCP)41. Dreyfus’s

41 Koori Dementia Care Project – information available from the web address: http://www.neura.edu.au/koori-dementia-care-project/about 140 account of Heidegger’s ‘ontology of art’ and his account of the work of art as either ‘manifesting’, ‘articulating’, and ‘reconfiguring’ a ‘Culture’s understanding of Being’ provides a useful framework for thinking about the effectiveness of the work of art in performing its ontological function (Dreyfus 2005, p.407). In this study, what this refers to is how the Artwork unveils an Aboriginal ‘world’ of significance for being-in dementia.

Figure 2, ‘Trek of hope for a dementia cure’, shows the painting by Mary Jane Page depicting dementia in the brain. The Artwork speaks to an Aboriginal aesthetic of understanding as a tool for health promotion in both engaging community interest and for generating knowledge and capacity building in Aboriginal communities about dementia as a disease of the brain. The notion of the appeal of an aesthetic of understanding refers here, to what Heidegger calls, ‘the style of that world’ (Dreyfus 2005, 407). Dreyfus gives a clear explanation of this concept. He says, “… the understanding of being has a history… The way beings are revealed determines how anything shows up as anything … We can call the truth of being of a particular culture or a specific epoch in our culture the style of that world” (p.407). Thus, while the artwork is aesthetically pleasing in its textures, colours and spatial composition, this does not in itself, give the artwork its significance. Rather, the notion of ‘style’ being used in this context refers to its iconic significance in expressing an Aboriginal conception of ‘being- in-the-world’.

The idea of the significance of the painting’s ‘existential ground’ arises here. In Aboriginal art, this is ubiquitously expressed in landscapes of place-based significance, a topographical perspective evident also in the Artwork under consideration here. To this end, I find much of resonance for my analysis in Jeff Malpas’s reading of Heidegger’s notion of ‘being-there’, as ‘a topology of being- in-place’ (Malpas 2006; Malpas 2008). This understanding guides me towards understanding the significance of this Artwork in light of its function as a ‘tool’ for public health engagement. It holds the potential to open, what Dreyfus calls a ‘disclosive space’ for new understandings, meanings and actions to occur (2005, p. 408).

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Figure 2: ‘Trek of hope for a dementia cure’: The Brain and Dementia

In my discussion, I intersperse the words of Mary Jane Page on the meaning of her artwork, ‘Trek of Hope for a Dementia Cure’, with her words in bold italics42.

The brain as ‘place’: Entering-in

The Artist begins her depiction of the brain with dementia through a process akin to Polanyi and Gendlin’s focused, bodily indwelling. ‘How do you paint dementia’? I wondered to myself. So I just sat in quiet time. ‘Quiet

42 The Artist Mary Jane Page provides a fulsome explanation of the meaning of her painting which has been reproduced on the brochures and flyers which show the artwork, on one side; and her explanation of the artwork on the other. See Koori Dementia Care Project (KDCP) 2013. Op cit. 142 time’, like the notion of ‘dwelling’ in Heideggerian scholarship, can also be thought of as a way of cultural ‘comportment’. This follows Ladkin’s view of ‘dwelling as comportment’ to convey one of the ways of ‘coming into right relation’ (Ladkin 2006, p.87)43. In this space of ‘quiet time’, the art work draws from emotion and the imagination, which the writer, Hustvedt, argues in her book, Living, Thinking, Looking (2012), is deeply bound together in perceptual awareness as a form of embodiment. I did it in an artistic way; best way I could do with heaps of feeling going into it.

The painting of the brain is depicted as a painting of ‘place’, with reference to a topographical landscape. Jeff Malpas’s argument (2006), for redescribing Heidegger’s concept of ‘being’, as ‘being in place’, can be usefully applied to this artwork in looking at how the idea of the ‘brain as place’, expresses an Aboriginal cultural conception of ‘being’; and by extension, to shed new light on what it might mean to ‘be-in-dementia’ in this cultural view. Malpas’s scholarship, centres on the significance of the concept of the ‘conceptual ground’ underpinning Heideggerian analyses of ‘being’, as ‘being in place’ (Malpas 2008). His argument for this dual notion of ‘place’ refers to both an ‘ontological locality’ and a ‘physical location’ (de Beistegui 2008). Some scholars speak of this ontological-existential significance in cultural terms, while others prefer to conceptualise it as Aboriginal philosophy: a way of being, knowing and enacting the world (Muecke 2004; Swain 1993).

43 The notion of ‘coming into right relation’ has deep resonance for Aboriginal concepts of ‘ethical relatedness’. See for example, Karen Martin’s study (2008), Please knock before you enter: an investigation of how rainforest Aboriginal people regulate outsiders and the implications for western research and researchers, Op cit. 143

The brain as ‘place’: tangible and intangible elements

In Page’s painterly depiction of the brain as place, the landscape of the brain is real and textural as well as intangible. Its brushstrokes and markings depict the brain cells, blood cells and the areas affected by dementia. This shows the brain as an actual site and dementia as an identifiable entity within the brain. In the middle part of the brain is a black spot, which is the first sign of dementia and it spreads like a vortex through the other brain cells. The rest of the black around the brain is the other cells dying and the silver represents the minimum of brain tissue that is left. The red shapes represent the blood flow, the blood cells and the veins.

In its intangible sense - as with depictions of significant and sacred places in Aboriginal Origin stories - there are qualities and potencies associated with these sites. There are slight greens in there, which to me is always to do with mentality that acts like a calming. Also in the centre of the brain is the Eye of the Mind. We are all born with the Eye of the Mind and we will die with the Eye of the Mind. It’s just part of our existence; the eye will always be there, even in sickness. This speaks to the idea of a ‘spirit’ we are all born with which connects one to other beings, past and present. I recall a visit to a respondent some months after her mum had died and she greeted me at the front door with, “I’ve been talking to mum a lot”. In this conception, ancestors, and the deceased, don’t just belong in the past; they endure in their life force.

This brings to mind also the timeless or eternal life of ancestral beings in the stories of Aboriginal Creation in both their human and non-human form. These beings can be identified in the landscape, in Country, as both physical entities - a collection of sacred rocks for example, but also, as the embodiment of the spirit of Aboriginal ontology44.

44 This conception is beautiful drawn in the Aboriginal writer, Alexis Wright’s novel, Carpentaria, Giramondo Publishing, 2006; See also, Robert Lawlor’s, Voices of the First Day: Awakening in the Aboriginal Dreamtime. Inner Traditions International, Ltd. One Park Street Rochester, Vermont, 1991. 144

The brain as ‘place’: being and belonging

The depiction of qualities associated with ‘special places’ is ‘linked to our own identity’, such that, ‘we might be said to belong to those places’, writes Malpas, in an article on ‘sense of place, new media and cultural heritage’ (Malpas 2008, p.201). As I alluded to earlier, we belong in those places in two senses: one refers to ‘place as a locality’; this is analogous to the site of the brain as an actual, physical entity housing the body’s functioning. The other sense of ‘place’, Malpas refers to is, ‘place as an existential ground’ (p. 201). This is akin to the mode of ‘being’ in ‘being in that place’.

While the first meaning of place, namely, the brain as an actual site, is the peg on which health promotion can speak to an Aboriginal aesthetic of experience about the brain and dementia, it is the second sense of ‘place’, namely, ‘place as existential ground’, that invites a profound thinking about what it means to be in an Aboriginal ‘world’ with dementia.

Unlike the brain slice visible under a microscope in the laboratory, the depiction of the brain in an Aboriginal conception does not have to be of an actual person’s brain. In the idea of the brain as a ‘place of existential ground’, we find a depiction of the brain and dementia made visible in and through an Aboriginal mode of being in the world – its ‘totalising horizon of being’ - which is also to speak of a ‘style’ of ‘being’ in a cultural world, a way of comporting oneself.

Still, for the work of Art to articulate a cultural world as well as to manifest it, argues Dreyfus (2005, p. 409), it must go further. At the heart of this, is the capacity of the Artwork to provide a language of ‘inter-subjective meanings’; that is, which, “give a people a common language to talk about social reality and a common understanding of certain norms” (Charles Taylor, quoted in Dreyfus, 2005, p. 409-10). In this sense, Mary Jane Page’s Artwork can be said to both manifest and articulate a cultural understanding of dementia’s impact in an Aboriginal cultural ‘world’.

This captures the intention of the Koori Dementia Care Project, to provide a language for shared ‘inter-subjective meanings’ which are, as Dreyfus notes, able to draw on ‘feelings, actions and ceremonies’ in community conversations 145 about dementia (2005, p. 410). To this end, the Koori Dementia Care Project has trained key community members to engage Aboriginal communities in dementia awareness and education – the rationale of health promotion – in a way which, Dreyfus says, ‘enables those in the culture to see it and to understand themselves and their shared world in its light’ (2005, p. 210) 45.

In this Aboriginal cultural paradigm, ‘lived experiences’ come together in Mary Jane Page’s Artwork in the spatial elements of its topographical relatedness: its circles, tracks and interconnections manifest ‘something other’ than the brain as an actual entity. What is manifested is a way of ‘being’ in being in this cultural world. In this sense, the Artwork captures a distinctively Aboriginal identity, character and mode of relating as a whole interpretive system. In this system of interconnected elements, the impact of dementia can be viewed as a disruption to relatedness and to caring ‘in place’.

‘Dementia’ in the Artwork is described as a vortex, destroying the brain cells in its wake. In the blackness there is nothing because we don’t know where the person goes to and because they are lonely. This is a space of disconnect, as in Page’s words, it symbolises loneliness and how the person feels with dementia. The black background shows up in the artwork in stark contrast to the rest of the colourful and spatially interconnected elements of the brain’s topographic landscape, including the memory tracks which are depicted as they leave the brain. The black background is the ‘vortex of dying cells’, depicted as a black background. It is a space of nothingness where ‘everything’s gone’. This leaves us to ponder what kind of language is there to describe this existential space of disruption, loss and despair?

The brain as ‘place’: ‘place’ and ‘placelessness’

What is the sense of ‘place’ at work in this painting as a metaphor for ‘being-in dementia’? The significance of the brain as ‘a place of existential ground’ is that it reveals something about what it means to exist in a world with dementia.

45 This is the idea behind the “proposed” Alzheimer’s Association Van with the Artwork, ‘Trek of Hope’ prominently displayed for rural visits. See Final Report of the Koori Dementia Care Project (2013). Op cit. 146

There is disruption and crisis as memory leaves the brain and as the brain cells die. The passage into the black background which is the death of the brain tissues is a rupture in relationships, continuity and interconnectedness when memories die with the person. We can see the memory tracks in the painting as they leave the brain, but as Page says, we don’t know where it goes to. This seems to be describing an existential condition of ‘placelessness’, a key concept in Heidegger’s ontology. Malpas is in agreement with Heidegger in arguing that the technological character of the age we live in, is also tied to the age in which ‘placelessness’, or the related idea of ‘homelessness’, has come to prevail as a feature of modernity’s ‘existential ground’ (Malpas 2008, p.280).

The ‘body’ in dementia too, is now part of a technologized experience, a point I pick up again in part C of this chapter and which illustrates the similarity of the concept of ‘a totalising horizon of being’ in Heidegger’s thinking with that of the notion of ‘being’ in its historical, epochal unfolding. For, as I will discuss in part C of this chapter, we live in an historical epoch which defines its intelligibility in terms of ‘comportment’ for a technological world.

Consider the words of Malpas in describing the existential-ontological place of ‘being’ in a technologized world: “We dwell, and yet we do not dwell; we belong to being, and yet are separated from being; we are in place, and yet we find ourselves displaced; we are at home, and yet nevertheless remain homeless” (Malpas 2008, p.309). Yet, this thinking can equally be extended to questionings of what it means to exist as beings ‘in dementia’ today. Consider the words of a study participant describing the “existential figure of dementia” (Cohen 2006) as it appears to her in the ward of a nursing home: “Just lies there in the bed. Still alive but doesn’t know anyone. Just looks so …babbles on…goes back to sleep; lingers on”.

The existential figure that emerges here is of a person cast adrift, existing, yet outside of human existence. As the referential world of meaning loses its coherence for the dementia sufferer, where is its ‘home’? Likewise, family members too, come face to face with this existential unravelling. This recalls Sandra Bartky’s (1979) definition of the ‘ultimate totalising horizon’ of ‘world’ in

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Heidegger, whereby, an intricate system of social relations supports a system of communication in a delicate web of interconnection.

While people with dementia exist as beings-in-the-world, in the words of Mary Page, we don’t know where the person goes to. In the face of ‘dementia’s’ existential unravelling, Bartky’s ideas ‘of a delicately balanced interconnection’ can here be proffered to questions of how, in an Aboriginal cultural conception, we come to know ourselves in dementia’s pervasive form today. As a study participant observes of dementia’s modern epochal form46, this is not always easily recognisable: “I couldn’t comprehend what it was ‘cos I’ve never seen it. I mean I’ve lived here all my life, I’ve never seen anyone that couldn’t remember or didn’t …. See, cos people when they died sort of just died and that was it. But now it’s that lingering on….”

Of particular relevance for the discussion here in this ‘lingering on’, is the shadow of nursing home placement as it looms over families. This can be experienced as a threat to traditional practices of caring ‘in place’. Ideas of ‘place’ and ‘placelessness’, in this sense, can be understood as both disrupting how we recognise ourselves as family carers in dementia’s modern form; and in a similar vein, as existential disruption to ethical belief systems for ‘dwelling’, ‘in right relation’ in regard to the care of older family members with dementia.

The brain as ‘place’: crisis, disruption, hope

What I have discussed in the preceding pages is how the Artwork, ‘Trek of hope for a dementia cure’, draws attention to the ‘style’ of the ‘world’ in an Aboriginal cultural conception. Following Malpas, I have noted the dual nature of ‘being’ at work in the Artwork’s depiction of the brain: both as an actual physical entity (a depiction of the brain and dementia); and as a place of ‘existential ground’ in its topographical (landscape) and topological (spaces of interconnected and positional) significance. The former (the brain as an actual entity), shows how the brain is depicted in the ‘style’ of an Aboriginal world; and the latter (the brain as an existential ‘place’ of significance), signifies a way of speaking to an

46 I am referring here, in particular, to the phenomenon of ‘old age dementia’ 148

Aboriginal conception of what it means to ‘be there’ (a literal translation of Heidegger’s seminal notion of Dasein), in other words, ‘to be in that place’.

Dreyfus draws on Heidegger’s conception to illustrate how the Artwork achieves the function of opening a ‘world’, when he writes, “Heidegger calls the way the artwork solicits the culture to make the meaning of the artwork explicit, coherent, and all encompassing, the world aspect of the work” (Dreyfus 2005, p. 411). Using the idea of ‘world’ here to denote the ‘worlds’ of human beings themselves (and not in the sense of the origin of being’s ‘Being’ in a ‘World’), the significance of this idea is to think about the notion of ‘worlds opening up’. As Dreyfus writes ‘in the material practices of these ‘worlds’, each group of historical people allows us to see the style of their own culture by showing it in a glamorized exemplar’ (2005, p.413).

Mary Jane Page’s striking Artwork is held up to its own community as articulating what is central and distinctive about its way of ‘being’ in ‘being-in- the-world’. Likewise, the Institute housing its neuroscience researchers show the exemplars of its own material practices in the equipment (for example, MRI scanners and microscopes), practices and ‘comportment’ of its bio-scientific ‘world’. In and through the Artwork, ‘Trek of hope for a dementia cure’, what shows up as significant not only relates to what is contained within that cultural paradigm, in other words, the way in which it manifests and articulates an Aboriginal cultural conception, but, what shows up as significant in disclosing the world of those on the other side of that cultural conception. In other words, the ‘world’ disclosed by the bio-scientific paradigm of the Institute itself.

The Artwork does this by producing a sense of estrangement or wonder when we come face to face with each other’s cultural ‘world’, as paradigmatic ‘other’. I see this in the faces of viewers who see Mary Jane Page’s Artwork for the first time. It is precisely the dissonance between these cultural ‘styles’ that is required for an ‘opening up of these worlds’ (Dreyfus 2005, p. 412). It is the difference that illuminates what is visible and what is hidden from culture to culture and discloses what is central and what is marginal for each culture’s experiencing of ‘being-in-the-world’.

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A notable aspect, which Borgmann (2005) draws our attention to in Heidegger’s claim on how the Artwork functions, is that it illuminates a distinctive language in opening up a ‘world’. We see this at work in ‘Trek of hope for a dementia cure’, where the ‘world’ disclosed emerges, as Borgmann says, ‘as a counter to the distress of technology’ by rooting itself in a traditional, Aboriginal cultural conception of ‘being’ (Borgmann 2005, p.425).

Yet, as Dreyfus points to, the ‘style in which everyday practices are co-ordinated and safeguarded’, is also the style from which new practices are developed, co- ordinated, shown to matter; and transferred from situation to situation’ (2005, p. 408). It is here that the Artwork is solicited by those outside the cultural world of the community to demonstrate how the material practices, apparel and paradigmatic beliefs of its bio-scientific world can speak to a language of ‘mattering’ for being in an Aboriginal world. In public health and medical speak, this is a conversation about the importance of early detection and diagnosis of dementia; the advantages of using technologies such as magnetic resonance imaging (MRI scans) and brain positron emission tomography (PET) scans to refine diagnosis and advance research in areas of the dementias; and the belief of the ‘world’ of medicine more generally, that a cure for dementia is on the horizon.

Mary Jane Page, in explaining her brief for the Koori Dementia Care Project (KDCP), speaks to this aspect, that is, to the promissory potential of the ‘world of Medicine’ and bio-science itself - in the artwork’s symbolic meaning. We don’t know where it [the death of the brain tissues] goes to and that is what we are hoping to find out. The flowers represent hope; hoping one day there will be a cure for dementia. The red in the flower is strength and power because we must have the strength and the power to have hope. The gold also means strength and it signifies the sun, hoping that the sunlight comes in, and that there will be a brighter day for those people suffering from dementia.

By turns, it is from inside the language of ‘lived experience’ – as expressed in ‘ordinary’ language as well as in works of art and poetry - that the significance of ‘dwelling’ in an Aboriginal historical worldview can be found.

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The brain as ‘place’: reconfiguring a ‘world’

The painting, ‘Trek of hope for a dementia cure’, now hangs on the walls of Neuroscience Research Australia. The question, following Dreyfus’s (2005) reading of Heidegger, is whether this Artwork functions as a way of ‘reconfiguring a culture’s understanding of its Being’; which for the purposes here, asks about a culture’s understanding of itself in relation to the ‘world’ being inquired about. The questioning behind this idea is whether there is a fundamental shift in how we - Aboriginal communities and the research community alike – think about what it means to be in a ‘world’ with ‘dementia’. This is the challenge the Artwork as perspective throws out.

From the Artwork’s new location at Neuroscience Research Australia, the question arises as to whether the staff and visitors viewing ‘Trek of hope for a dementia cure’, ‘see’ it, as Dreyfus says, as a ‘private aesthetic experience associated with the beauty of the Artwork’, or, whether it functions to ‘illuminate the ontological basis of its cultural conception’ (2005, p. 413); and in so doing, to illuminate something about the ‘world’ of the Institute itself. For Aboriginal communities, the question arises as to whether, in their engagement with the Study and the Institute, they too come to experience themselves differently.

Through the preceding discussion, I have drawn attention to the effectiveness of Mary Jane Page’s Artwork in both ‘manifesting’ and ‘disclosing’ an Aboriginal cultural world; and thereby, showing up – through the space of disclosure between the Artwork and the Institute - that which is significant too, in the bio- medical, technologized world of brain research and practice in the paradigmatic ‘style’ of Neuroscience Research Australia.

The Artwork manifests a ‘world’ by showing those ‘outside the culture’ the way of ‘being’, in ‘being-in its world’. For those ‘inside this cultural ‘world’, it articulates a world ‘by producing shared understandings in the style of that world’. In this sense, it both discloses and makes ‘worlds’, as it illuminates how people ‘see’ themselves and how they express this identity. This allows ‘a culture’ to recognise itself, which in terms of the Artwork’s function as a tool for

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Indigenous health engagement, invites those to legitimate their cultural experiencing at the centre of the dementia conversation.

However, for the artwork to ‘reconfigure’ a ‘world’, one is asking whether something more fundamental is occurring in a ‘culture’s’ understanding of itself. For an Artwork to play a role in changing the very shape of a Culture’s discourse of understanding, it must - following Dreyfus’s analysis of Heidegger’s role of the ontological function of the Artwork - perform three significant functions, which I paraphrase here (2005 p.416). These are to bequeath the role of the past, wherein, some of its marginal practices become central, and some of its central practices become marginal; to ground the present in the culture’s marginal practices thereby, making them the focal point of the new ‘style’, and, to prepare a new future, “by calling on the people in the culture to be its preservers” (2005 p. 416). The question then that arises in this expanded interpretive lens is: what does a new cultural paradigm for ‘being-in-dementia’ mean in this enactment of past, present and future?

The ‘reconfiguring of a world’ in Heidegger’s thought is the idea that ‘a new humanity’ comes to occupy the very thought of ‘being’ in a given epoch. In Heidegger’s conception these are fundamental ways of reconfiguring the idea of ‘being’ as beings-in-the-world. For this inquiry, this means thinking about what ‘being- in-dementia’ means.

As to whether the Artwork, ‘Trek of hope for a dementia cure’, represents a major reconfiguring of a culture’s understanding of ‘being’ in a ‘cross cultural’ sense, remains to be seen. For the ‘world’ of the Institute still hangs together in a horizon of intelligibility underpinning notions of ‘scientific man’, placing its faith in the promissory potential of medical research and beliefs about the importance of dementia diagnosis and early intervention for dementia management protocols.

The notion of reifying ‘scientific man’ for any given cultural group, is that it risks having as its corollary, a notion of other cultural groups as ‘non-scientific man’, in other words, in perceptions of Aboriginal people as ‘spiritual man’ who place their faith elsewhere (Muecke 2004, p. 134). This phenomenon of ‘pairing

152 concepts’ – ‘scientific man’ versus ‘spiritual man’ - is at the heart of contemporary forms of Indigenous marginality in discussions of Australia’s modernity, the subject of Stephen Muecke’s book, Ancient and Modern (2004).

For the Artwork to play a truly reconfiguring role, would require an expansion of meaning on both sides of the cultural conception, capable of moving between differing traditions and practices and offering new meanings and praxes around caregiving and the management of dementia. It would be able to articulate the aspirations of both ‘scientific man’ and ‘spiritual man’ as part of the fabric of societies’ understanding of its own temporal, historical nature and not create dichotomies around these concepts. What can be suggested, if the deeper ontological significance of Mary Page’s Artwork is grasped, is that the Artwork provides an opportunity for deepening the conversation around dementia.

Finally, in a global world of population ageing, we, Aboriginal communities and non-Aboriginal communities alike, are involved in the phenomenon of dementia. We all face a future with ‘dementia’. However, in so doing, we bring the past with us. The past in this context, can be read at a number of different levels. In Heideggerian language, these include three levels of existence: the ‘ontic’ level of existence (to denote actual or real existence); the ontological level of existence (to refer to the nature of our ‘being’ in existing); and an onto- theological level of existence (to refer to the origin of all ‘Being’), the latter falling outside the scope of ‘world’ that I am discussing here.

At the ‘ontic’ level of past existence, that is, actual historical events and happenings, it is important to emphasise the colonisation of Australia as the seminal historical ‘event’ or ‘happening’ for Aboriginal people. The massive upheavals, disruptions and crises that continue to reverberate into Aboriginal peoples’ lives today result in the poorer health, social and educational outcomes evident in comparison to the remainder of the population - a characteristic shared by Indigenous populations in other ‘fourth world’ countries, such as, Canada, New Zealand and the United States (Jackson Pulver, Haswell & Ring et al. 2010; Lee 2006). As a result of these factors, Aboriginal people are at greater risk of developing dementia by comparison to their non-Aboriginal counterparts, a finding borne out by recent and current Australian studies of

153 dementia in remote, urban and regional Aboriginal communities which I cite in the introduction to this study. Dementia, as with other chronic diseases, is entangled in colonisation’s own trajectory. In this sense, the past, history itself, reappears in the body.

In history’s ontological level or what Charles Guignon (2005), refers to as ‘the capacity humans have to be historical’, it is life itself that must be understood as a ‘whole movement’ (2005, p.394). In the notions of ‘historicity and history’ in Heidegger’s Being and Time, Guignon remarks, “the past is defined by a specific way of “coming toward” the future” (2005, p.396). This is a way of thinking about the idea of ‘destiny’, a concept embodied in the ‘works’ of Indigenous society’s ‘essential thinkers’ – be they artists, poets, or elder statesmen and women47. For Heidegger, this is not history in the traditional sense, as Guignon observes, but an idea of history as a ‘wider happening’ in which human beings are held in its revealing (p.393).

To conclude this section of the chapter, in an Aboriginal conception of ‘being’, much is at stake in the idea that ‘being sends itself to its destiny’. What the future holds in this sense, can be viewed as both an honouring of what has been, that is, a notion of the past in an Indigenous ‘worldview’ as a total horizon of Aboriginal ‘being-in the-world’; as well as, an honouring of what has been disrupted.

In other words, as Muecke argues in Ancient and Modern, it speaks to the contemporary political expressions for ‘maintaining and protecting Indigenous identity’ in the face of the existential crises brought on by colonial dislocation (2004, p.135). For the ‘past to come towards the future’, is also a belief in the healing potential of renewing the legitimacy of Indigenous worldviews in all their contemporary articulations to carry Aboriginal people into the future.

47 I am thinking in particular here of the poetry of Oodgeroo Noonuccal (formerly known as Kath Walker), an Australian poet, activist and educator, and Aboriginal Australia’s first published poet. See her collections, ‘My people: a Kath Walker collection’; and ‘The Dawn Is At Hand’. Available at: http://www.poetrylibrary.edu.au/poets/noonuccal-oodgeroo First Accessed: 8 October 2013 154

Part B. Dwelling in worlds of care: ‘concrete world disclosure’

Introduction

In this section of the chapter, I turn to Bartky’s (1979) second way in which Heidegger uses the term “world” to denote the manner in which ‘being’ is disclosed. This is the notion of a ‘concrete life-world’ in which the province of caring for these participants and those they care for is illuminated. It is a perspective concerned with the ontological nature of human existence, in that, its concern is with the manner in which human beings – family caregivers in this study - ‘dwell’ in a set of concerns. Dreyfus calls this approach of Heidegger’s to ‘being amidst’ the activities and practices of daily routines, ‘a hermeneutics of the everyday’, which is held up against the notion that, as human beings, we have an inherently ‘self-interpreting nature’ (Dreyfus1991, p.34). Yet, it is because we are already immersed in our lives in a particular way, that we don’t necessarily see its own character as interpretive. It is mostly only in circumstances of crisis, disruption or anxiety that human beings move deeper inside a questioning or self-reflective attitude.

Heidegger’s approach to hermeneutic phenomenology is, therefore, to begin in ‘language, tradition or other human practices’, to reveal the manner of human beings existence in the world (Dreyfus p.39). For the purposes of this study, this is to inquire about what it is like to be a caregiver in an Aboriginal world of ageing and dementia; to appreciate how caregivers are oriented to their caregiving; and to think about how this quality can best be conveyed as textual ‘data’.

In part B of Chapter Four – existential struggles as ‘acts of self-disclosure’ - I provide an entry point for understanding what it might mean to be a ‘carer’ in this ‘world’. I enter into the existential struggles of participants who are grappling with the world of caregiving into which they have been ‘thrown’. What I focus on here in this section of the chapter, is what Bartky describes as, ‘the revealing capacity of language itself’ to shine a light on what it may be like to ‘dwell’ in this world (Bartky 1979, p.221).

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The concept of ‘lived experience’ is at the heart of the phenomenological enterprise. In Simon Glendinning’s book, In The Name Of Phenomenology, we see its ‘shifting trajectories’, with for example, Husserl’s dictum, ‘back to the things themselves’; Heidegger’s preoccupation with ‘the meaning of being’; and Merleau-Ponty’s return to the body as the prime site for knowing the world in ‘immediate perception’ (Glendinning 2007, p.1).

This ‘phenomenological inheritance’ has continued its polemical journey into contemporary questions of how, on the one hand, we live in our day to day changing social, cultural and political worlds (Kompridis 2006; Dallmayr 2009; Bhabha 1994); and on the other, what this ‘inheritance’ means for application in scholarly and professional practice in areas as diverse as education, business management, medicine and bio-science and technology (Van Manen 1990; Segal 2010; Svenaeus 2013; Wrathall and Malpas 2000).

At the heart of this study’s project, is the centrality of the family caregiver in an Aboriginal ‘world’ of ageing and dementia. In Van Manen’s landmark book, Researching Lived Experience (1990), he describes the elements of the ‘lifeworld’ as: ‘the experience of lived time, lived space, lived body, and lived human relation’; phenomena which he points out are elusive by virtue of their ‘preverbal’ nature (p. 18).

Following Van Manen’s argument, it is ironically in the fastidious detail of concrete description itself, that the living, breathing presence at the heart of the experience of caregiving can be found. Jankelson (2005) writes of the notion of ‘lived experience’ in research as, “a recollection of experience in such a way that the experience is internally lived and thereby apprehended” (p., 9).

For participants, this occurs through the dynamic of narrative telling in the interview encounter. For the researcher-writer, it is received through cultivating ways of seeing and listening that attend to moments of participant and one’s own embodied disruption, moods and demeanour. As Jankelson writes, ‘in the embodied aspect of researching lived experience, the experience is lived again through the body’ (2005, p.9). This aptly describes the feeling I experience being brought back into the dialogical atmosphere of the interview when I

156 revisit the audio-transcripts in the quiet space of my own company. In my repeated listening for the ‘language of experience’, I encounter again a feeling of ‘rightness’ in pursuing a hermeneutic, phenomenological approach in the writing of narrative texts to convey the experience I am attesting to. It is a process of circling back from the place where I first enter into the lives of participants – their existential struggles - to an emerging narrative that is unfolding.

Grace, Higgs and Ajjawi (2009), in their chapter on ‘writing phenomenologically’, note how writing is used ‘to get as close as possible to the experiences of participants’ (p. 117), and in so doing, ‘to bring the experience alive for their readers’ (p.121). With these intentions in mind, I write the following research narratives with phenomenological discipline, orienting myself towards ‘careful and detailed description rather than explanation or analysis’ (Glendinning 2007:16).

The research narrative derives from a domain of experiencing which draws its meaning from the ontological integrity of the text being honoured in its wholeness. At a conceptual level, this is to draw a distinction between that which is present to us, and that which signals its ‘presence’ to us. To approach this way of tuning into experience, I begin by turning my attention towards listening for what the occurrences of caregiving in this ‘world’ are like.

The lived relation of caregiving

In ‘concrete world disclosure’, the emphasis is on the way in which words are used to describe an activity, occurrence or gesture, so as to reveal the ‘life-world’ of the person to which it belongs (Bartky 1979, p. 214). The artful nature of the description is to evoke, as Bartky writes, a world of ‘concrete existence’ in which ‘this human individual lives, works, and dies’ (p.214). In describing the lived world of the caregiver my focus is on the ‘lived human relation’ between the caregiver and the person they care for.

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In this relation I see the way participants are oriented to their family member in the manner of their solicitous care. It is also at times, a tensional lived relation, as it discloses something of the struggle for participants’ own survival and recognition as they endeavour to honour the survival and recognition of much loved family members. I see in these narrative accounts the depth and texture of their lived relation. It is, as Heidegger describes it, ‘a dwelling in a set of concerns’. In this space of disclosure, we glimpse something of the quality of ‘being’ for these participant-carers in ‘being-in’ their practical day to day care giving concerns.

I turn now to the words I use to describe ‘dementia’ as a living phenomenon in Aboriginal families. These narratives arise from descriptions and stories gathered during the course of interviews conducted with study participants. In weaving the words of participants through the words of my narrative compositions, I am, as Gannon expresses, ‘creating new narratives as I write’ (Gannon 2009, p.74). Participant’s words are in italics.

Food is soul

Doreen gets lost in the kitchen. When she gets depressed then she really goes mad in there! There are cakes and baked dinners and boiled dinners and fish. She tells me about the mullet a lot of Aboriginal people living on the coast used to love to catch. This is our special food if anyone is sick. She loves to make mullet soup which makes her mum feel so good. Her mum loves also, Doreen’s sago or tapioca – which her own mum used to make all those years ago - and rice puddings and cakes. Her favourite is peach pie and so Doreen makes that too for her mum, and date cakes, and banana cakes. Food is soul, she tells me. It keeps you going, gives you lasting. In the family, it is Doreen that everyone looks to for this. And the meals should be just so, served just as Doreen likes them, to make sure that her mum enjoys them, just as she did for her own family while they were growing up; and just as her mum did before her.

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When Doreen moved away for a time she would ring every day to see how her mum was getting on. Her mum would oftentimes be alone, sitting on her lounge staring at the carpet. Doreen would think, ‘where the hell is everybody?’

Then when she came back to Sydney, they were all back at her mum’s house, yarning and eating leftovers and cakes! They’d be sitting at her mum’s feet and asking her lots of questions about her past and things that happened and her mum would just come out with it! She laughs as she tells me this and marvels at how knowledgeable her mum is and how she remembers everything that happened from long ago as if it were yesterday. So the house was transformed from dull and boring and it was good. The house was alive again.

‘Being-with’ in the high care dementia ward

Anne’s mother has limited movement. She lies in whatever position she’s been put into. She doesn’t speak. Occasionally, she tries to verbalise. She is spoon fed and has suffered numerous bouts of pneumonia caused by infection to the lung where the food has gone down the wrong way. She has also had a recent diagnosis of cancer. Ann says she had a wonderful day with her mum yesterday.

I try to imagine what this could possibly mean. I’m struggling to comprehend the value of attempts to resuscitate her in this world of suffering and incapacity. I ask Ann if she can describe this visit to me.

When Ann arrives she sees her mother lying on the bed. She makes a big commotion to signal to her mother that she, Ann, her daughter is here. ‘Audrey, Audrey’, she calls making sure her voice is loud enough for her mother to hear. She comes around to the side of the bed where her mum’s face is. Her eyes are fixed on her mum and she continues to call her name to signal her presence. She bends down to cuddle her and manoeuvres her arms around her body as best she can as her mum’s body is rigid and heavy. Her hands are right behind her mum now and she moves them into an embrace as she wants her to feel that warmth and that contact. She kisses her on the cheek and half smothers her! That’s because she wants to get her own face aligned to her mum’s which has

159 slumped quite low on the bed. She hears her mum make a sound like ‘rr’ and then she laughs as she will have said something funny; and then Ann will laugh and her mum will laugh again and it will be so good! And what a thrill it is to see the smile on her mum’s face and to hear her respond! They would have had a joyous day. And Ann feels blessed as she still has her mum with her.

The carer as guardian angel

Vicky lies there at night time and weeps quietly to herself. Sometimes she calls her sister, Louise, on the telephone in what seems like the dead of night. Her sister tells her that she is the angel that looks over her. How did you know I needed to talk? And then Louise begins to weep. She is so confused. She wonders if she is seeing things with her husband. Is she exaggerating? Imagining things? Vicky reassures her she is not as they have seen it too: his strange aggressive outbursts, his swearing so out of character, his urinating on the front lawn! Louise tells her sister how angry she feels towards him and how lazy he is, the way he shouts and bosses her about! And then, she’s telling Vicky how sorry she feels for him and that he doesn’t deserve this, poor bugger.

Louise’s voice will get soft and sound frail and she will tell Vicky that he is not the man she married all those years ago. She will weep again and say she doesn’t know what to do. And Vicky will say, ‘Well, you can’t look after him. If you have another stroke trying to cope with him at home and it kills you, WELL, what’s going to happen to him then’?

Louise really needs to believe her. She needs to hear her say this. Vicky tells me what a strong person her sister has always been and to hear her cry, well, it just breaks her heart.

Tears and confusion in the diagnostic encounter

I first meet Nora in a support group for carers. Her mum is there too. While we sit in the group and have a good conversation around the big table, her mum is

160 quite content in her armchair in the background, resting and taking in the surroundings. During one of the coffee breaks, Nora and I have a chance to talk. She tells me her mum has dementia and I ask her if this has been diagnosed or whether it’s something that Nora knows from her own observations. The mention of the word ‘diagnosis’ touches a raw nerve in Nora and she describes to me the outrage she still feels about the whole experience. The story comes out like a torrent.

Well, someone suggested I take mum to see about the dementia and I thought I’d give it a go. So I take mum to this place and we see a doctor there. He seems alright, a bit young, but alright. We sit down and he starts asking mum all these questions. I can see that mum is getting confused but he keeps on asking and confusing mum. I ask him why he needs to ask these questions, and why does my mum need to know this?

By now mum is so upset she is crying and I can’t take any more. So I grab mum and walk out. Mum goes home to bed and stays there for three days she is that upset!

Then, a few days later the doctor rings me at home and says to me that I need to face up to what is happening with mum. He tells me I need to think about putting mum in a nursing home! Well, at that point, I just lost it. I yelled at him, ‘No way will my mother ever, ever end up in a nursing home. She is staying here with me’.

The hallmark of this kind of writing is that the how the narrative account is written and what it is about are indistinguishable (Glendinning 2007, p. 9). Further, the meaningfulness of the text is revealed in the writing itself, which as Grace, Higgs and Ajjawi remind us, is simultaneously ‘the data, the method and the outcome of the research process’ (2009 p. 117).

The meaningfulness of the text signals to the reader that something significant is at stake for participants and those they care for. In other words, there is something significant to be gained or lost in the experience of caregiving.

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In the narrative, ‘food is soul’, nourishment is the metaphor for demonstrating the solicitousness of the care between Doreen and her mother. Further, this quality of care is intergenerational, as Doreen tells me ‘mum honoured her mum in this way’. It is this nourishment that brings richness into the life of this family and which strengthens the place of the elder – Doreen’s mum - in a horizon of temporal-emotional significance.

In ‘the carer as guardian angel’, the closeness and affinity between two sisters is disclosed, as is the manner in which Vicky positions herself as her sister’s ‘guardian’. She lives in anxiety and concern for her sister’s capacity to care for her husband at home in light of her failing health.

In the narrative, ‘Being-with in the high care dementia ward’ we see in the lovingness of Ann’s embrace the expression of their closeness and the continuation of their mother-daughter relationship. This is all the more poignant as it is the ‘world’ in which her mother exists in end-stage dementia and in which she will die. In this mode of concrete disclosure, we see the way Ann endeavours to maintain her mother’s place in her life, and in turn, maintain her place in her mother’s life. The warmth, tenderness and emotion that exist between Ann and her mother shows up in stark contrast to the sterile surrounds of the dementia ward with its technical gadgetry and perfunctory routines. The tenderness of their lived relation contrasts sharply with Ann’s distress on finding her mother with bruises on her arms which convinces her that her mum is sometimes ‘not properly handled’.

The moods of caregiving

In these narrative accounts, I have tuned into the phenomenological space of the caregiving relation. These disclose the ‘moods’ of caregiving. Yet, we can speak also of ‘mood’ in a collective sense, as in the shared mood of apprehension

162 that makes its presence felt in the ‘yarning circles’ on dementia in Aboriginal communities48.

‘Yarning circles’ are the preferred term to denote ‘focus groups’ in an Aboriginal cultural conception (Besarab and N’gandu 2010). They involve ‘yarning’ or the telling of stories to highlight issues of personal and collective significance to people in a given existential situation (carers), or cultural group (Aboriginal people from a particular community). They are used to stimulate shared discussion and the sharing of knowledge in an atmosphere of mutual support. They take place in a collective space that provides a culturally respectful and meaningful environment to ensure Aboriginal people’s participation. In this study, ‘yarning circles’ took place in both dedicated Indigenous spaces, such as Aboriginal community and health centres; and in mainstream environments with a designated space drawing on Indigenous friendly aesthetics and cultural protocols.

In these narrative discussions, the anxiety and dread evoked by dementia, including the fear of its possible eventuality is palpable. Further, the perception of dementia’s widespread prevalence today is seen by many as a consequence of the impacts of colonisation and subsequent changes to Indigenous life and society, a perception found in a study of dementia in First Nation Elders in Canada (Hulko, Camille, Antifeau et al. 2010).

In a Western Sydney ‘yarn-up’ an elder asked: “What was our life-span then? What I’m getting at is that dementia comes with loneliness; the love and care that is not there anymore. It changed their bodies“.

“I’ve seen the old fella’s. There was no sign of dementia. They were strong people. They didn’t have spiritual sickness”. Another participant in the group referred to a lady who has been researching ‘dream-time stories’. “I get the opinion that they are talking about very old people who lived for a very long time. Traditionally people were happy and blessed”.

48 I attended several ‘dementia yarn-ups’ as part of the ‘data collection’ for this study. See Appendix 4 163

In a support group in Campbelltown where I go to ‘yarn about’ dementia in this community of carers, the conversation turns to what it is like to be the family carer for someone with a dementia. We listen to the moving accounts of members of this group, in particular, to one lady,49 who finds the courage to voice the fear, anxiety and dread she has not been able to talk about publically before. The atmosphere in the room is redolent with emotion, confusion and poignancy and the group hold her disclosure with compassion and awe.

It is worth pausing here to consider how the idea of ‘mood’ in Heideggerian thought works to disclose a ‘world’, whether for an individual who is ‘thrown into’ a situation; or to denote the ‘world’ of a group, such as in this support group for carers. As Dreyfus and Wrathall explain of this concept, ‘moods are neither subjective psychological phenomena, nor objective properties belonging to entities in the world’ (Dreyfus and Wrathall 2005, p.5). Rather, as the authors assert, “they reveal something important about the fundamental structure of the world and our way of being in it” (p.5).

It is this ‘interdependence between person and world’ that I seek to disclose in tuning into the ‘mood’ of an interview or the ‘mood’ of a ‘yarning circle’. What shows itself is the way in which the situations these human beings find themselves in in the world matter to them. In this sense, the interviews - both individual and group - become a meaningful space for disclosing the ‘world’ of caring in dementia.

With this understanding, I start to appreciate the way in which the story, ‘tears and confusion in the diagnostic encounter’, shows the workings of two distinctive referential worlds. In the biomedical world of the dementia diagnosis, the doctor would be familiar with the dementia screen as a diagnostic tool in his referential world of diagnosis and dementia management. He would no doubt have been baffled by Nora’s sudden departure from the screening taking place. He would have felt encumbered to follow up his ‘patient’ to give her ‘options’ in the care of her mother. These possibilities – the dementia

49 The narrative account of this lady and her sister appears in the story, ‘the carer as guardian angel’. The account therein derives from the one on one interview that took place between me and Vicky, the sister who took on the role of ‘guardian’. My understanding was deeply enriched by meeting both Vicky and her sister, and in listening to the way in which Vicky’s sister, Louise, spoke about what she was confronting in the care of her husband 164 screening, a diagnosis, and referral for nursing home care - would have ‘hung together’ as possibilities in his professional world.

For Nora, on the other hand, the possibilities in being the primary carer of her mother, a respected Elder in her community, would have included the possibilities that ‘hang together’ in her referential world. These may have included discussion about the best ways to care for her mother in her community. The questions being asked by the dementia screening tool may not have had much relevance to her mother’s functional ability in her world, a point made by the dementia researchers Jervis and Manson (2002) in their research with First Nations populations in North America.

While the doctor may have had the theoretical training required to function in a world of bio-medical understanding, he was ill-equipped to ‘comport himself’ in Nora’s world. In response to the ‘disruption’ of Nora’s mother’s distress and Nora’s own disquiet, he was unable to recalibrate from inside this ‘disconcertment’ (Law and Lin 2009)50. This ‘story’ highlights a central plank in Heidegger’s hermeneutic approach, namely, the role of ‘disruption’ in cultivating attunement for ‘skilful, practical coping’ (Dreyfus and Wrathall 2005, p.7).

Questions concerning who we are in the world, as carers, or as researchers, are questions too about how we ‘comport’ ourselves in cultural worlds. This leads me to the final part of this chapter which explores what is meant by ‘being-in’ a ‘world’ of dementia caring in a framework of ‘historical, epochal disclosure’.

50 The notion of cultural disconcertment has been addressed in the context of interactions between dominant and subaltern knowledge traditions and differing world views. For the former, see John Law and Wen-Yuan Lin, ‘Cultivating Disconcertment, version of 23 December 2009. Available at: http://www.heterogeneities.net/publications/LawLin2009Cultivating Disconcertment.pdf Accessed 11 May 2014; For the latter, see Helen Verran and Michael Christie, Doing Difference Together: Towards Dialogue with Aboriginal Knowledge Authorities through an Australian Comparative Empirical Philosophical Inquiry; Op cit. 165

Part C. Historical, epochal disclosure: Aboriginal caregivers in twenty-first century ‘dementia’

Introduction

The notion of epochal disclosure in Heidegger’s scholarship constitutes a complex philosophical argument. For the purposes of this chapter, my intention is to work with a few of its central ideas as a way of posing questions about the contemporary experience of ‘being-in dementia’ for Aboriginal family caregivers. To this end, I re-enter the language of family caregivers whose verbatim transcripts and audio-recordings bring to life elements of thinking underlying ‘historical epochal’ disclosure.

During the course of this study’s in-depth interviews, I have listened closely for how the language of participants discloses something about their ‘being’, in ‘being-in’ a ‘world’ of caregiving. I have attended to moods of ‘disruption’ in accounts of day to day living in this ‘world’ of caregiving. I have entered into these moods through a process of embodied immersion that I describe in the previous chapter. Now, I move between the interview ‘data’ and the central ideas underpinning Heidegger’s notion of epochal disclosure in thinking about the changing trajectory of being in a world of dementia caregiving.

As outlined in the introductory section to this chapter, historical, epochal disclosure is one of the ways in which ‘a world’ can be said to be disclosed, along with the concept of a ‘totalising horizon’ and the exposition of day to day living in its ‘concrete’ and immersive description. I draw from some of Sandra Bartky’s central ideas in her writings on Heidegger’s modes of world disclosure (Bartky 1979); and her exposition of the function of different levels of ‘thinking’ in Heidegger’s writings (Bartky 1970).

These ideas extend my own thinking about meanings of caregiving in an Aboriginal ‘world’ of ‘dementia’, and similarly, about what it means to be a researcher in the world in this ‘world’.

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The central ideas of historical, epochal disclosure

Revealing a ‘world’ in the historical, epochal sense, means there is something so characteristic that it encapsulates the zeitgeist of a particular historical period. By characteristic or ‘distinguishing’, Bartky (1979), is referring to that which is ‘novel, fundamental and wide-ranging in character’, such that, our very ‘being’ assumes a different essence (p., 214). The questions that come to mind here are: what are the markers of modernity in the unfolding epochal story about caregiving, ageing and dementia. Moreover, what can be said to be so distinctive about the experience of caring, ageing and dementia for Aboriginal families today, such that, caregiving assumes a different quality for ‘being’?

A further central idea underpinning the notion of historical, epochal disclosure is that it entails ‘learning to “think” anew’ (Bartky 1970, p.368). In Bartky’s article on ‘originative’ thinking in Heidegger (1970), she outlines the various ways in which Heidegger uses the term ‘thinking’ (p. 371): Firstly, there is ‘thinking as thinking about ‘Being’’, in the sense of thinking about the origin of ‘Being’’. Secondly, there is ‘thinking as thinking about the difference between the “mystery”, or “secret” of ‘Being’ and ‘being’ itself’, which is thinking about that which ‘presences’ itself to ‘being’. Thirdly, there is ‘thinking as cultivating a systematic rejection of “representational thinking”’, which is a questioning of the idea that an external world exists outside of human beings; which is a rejection of the notion of a subject-object duality. Finally, there is ‘thinking as the expression of new “names” for ‘Being’’. It is this latter sense of ‘thinking’ that is most relevant to ideas underpinning epochal, world disclosure.

The latter notion involves a concept and a language of how “Being “sends” history to itself” (Bartky 1970, p.370). In an everyday conception of this complex idea in Heidegger’s thinking this is to grasp the way in which thinking about what it means to be human change over time. So for example, Bartky (1970) writes, “with the occurrence of every new world-era there occurs a new

167 humanity: man is “subject” in one world; body informed with soul in another; a rational animal in still another” (p.371)51.

In Part A of this chapter, I spoke also of ‘rational man’ versus ‘spiritual man’, a certain way of thinking about Indigenous and non-Indigenous peoples as ‘ancient or modern’ (rather than as Muecke suggests as ‘ancient and modern’ (Muecke 2004).

The art of thinking - following Bartky’s discussion in this context - is in how language as it is expressed produces ‘a new thought about being’, which in turn, changes a certain relationship we have to our ‘world’. In this relationship between ‘being’ and ‘world’ language assumes central significance, which is why Heidegger sees in the language of society’s ‘essential thinkers’- poets in particular - the revealing capacity of historical ‘world disclosure’ (Bartky 1970, p.371; Heidegger 1971). Taking these ideas for their relevance to questions of our relationship as human beings to the ‘world’, the question arises as to how we think about ourselves today – whether as a whole civilization; or as a people, in the sense of Aboriginal people today. Then again, how we think about ourselves living ‘in dementia’ today.

The concept of ‘being’ in historical-epochal disclosure

To understand the concept of epochal disclosure, I detour back to Bartky’s (1979) two ways of describing ‘the thought of Being’ in Heidegger. On the one hand, there is the idea of ‘Being’ in its ‘epochal self-unfolding’; on the other, there are ‘the ways in which within any epoch beings come to be the beings they are’ (1979, p. 212).

Bringing these ideas to the level of actual history and human beings, the experience of colonisation is integral to the latter conception. As the Australian historian, Bain Atwood, has argued, ‘we need to rethink how it is that Indigenous people came to be Aboriginal’ (Atwood 1994). In thinking about the

51 Charles Guignon in his chapter on ‘The History of Being’ in Heidegger covers similar ground. See Dreyfus and Wrathall eds.; (2005), Op cit.

168 nature of ‘being’ in its epochal unfolding, the idea is not that we advance from one epoch to another in a linear or sequential manner, but in what Heidegger claims, is ‘the increasing concealment of Being itself’ (Bartky 1979, p.215).

Heidegger’s treatise on ‘being’ and ‘time’ in Being and Time (1962), pivots on the way in which the concept of ‘being’ retreats the more technology advances. As Harman explains of Heidegger’s thought, ‘in our epoch ‘being’ sends itself to us in the shape of technology’ (2007, p.140). This epoch of ‘technological enframing’ as Harman describes it, is a totalising horizon of being in a world where bio-science, bio-medicine and the genomic age go together. This is a familiar theme in the post-modern literature on what it means to be a person in the face of the types of bio-scientific and bio-medical innovations available today (Bauer and Wahlberg 2009)52. As Bauer and Wahlberg argue, these bio- technological innovations challenge our very conceptions of what it means to be a person today.

For Indigenous populations, the march of medical technology’s advancing progression, assumes an additional meaning, namely, the possible ‘reliving’ of an experience of invasion to the body. In Chapter Three, I refer to the ‘blighted intimacy of colonial power’, a phrase coined by the historian of medicine, Warwick Anderson, to describe the insidious power of colonial control over Aboriginal peoples’ lives and bodies. While we know something about the deep seated suspicion expressed by Aboriginal communities towards certain types of medical research, notably, genetic research (Dodson and Williamson 1999), we also know that Aboriginal people themselves are now beginning to participate in these kinds of controversial conversations (Kowal, Rouhani & Anderson 2011). Similar exchanges – though less contested - have been taking place in a number of Aboriginal communities over the course of the last decade in areas of ageing

52 In a more generic vein, as I discuss in chapter four, the increasing technologisation of the experience of sickness, underpins a substantial phenomenological literature in the ‘caring professions’, most notably, in nursing inquiry, seeking to counter this tendency with ‘a language of humanisation’ for health professional practice (See for example, Todres, Galvin and Holloway 2009)

169 and dementia (Alzheimer’s Australia Northern Territory 2002; Alzheimer’s Australia 2006; Smith, Flicker & Shadforth et al. 2011).

The conversation taking place in these scholarly and community development exchanges is happening in a ‘language’ that recognises the need to shift the centre of gravity away from bio-medical discourses in allowing other ways of speaking and knowing to establish their own legitimacy and points of engagement.

The important point which an epochal perspective allows us to grasp is that, while old age senility can be traced back to ancient times, it is its present-day expression that illuminates the ‘being’ of the phenomenon of old age senility today. In Leibing and Cohen’s thought provoking book, Thinking About Dementia, senility’s modern clinical form is the phenomenon of dementia and Alzheimer’s disease in a magnitude not seen before, and with associated modes of diagnosis, management and caregiving (Leibing and Cohen 2006).

An important part of this conversation is also the question of how, as a society today, we recognise ourselves in the ontological sense in the manner in which we provide care, in this case, to older people in ‘dementia’.

A brief history of ‘dementia’

‘Dementia’ has most likely been around since the birth of man. Boller and Forbes (1998) and Berchtold and Cotman (1998) draw from early medical writings, recorded history and the arts to paint a picture of dementia as synonymous, amongst other manifestations, with ‘loss of memory, impaired judgment, imbecility, insanity and a reversion to childhood’. The awareness of age being accompanied by ‘a major memory disorder’ goes back to around the year 2000 BC (Boller and Forbes 1998, p.125).

A number of thematic strands in the writings of these early times have a bearing on debates that persist in the literature on dementia. The first is debate over the association of ageing as synonymous with senility as well as awareness of a distinction between acute (reversible) and chronic dementia disorders. The 170 second is debate over where the problem is seen to be located in the body, to some extent mirroring differing perceptions about the causes of dementia in the cross cultural literature (Dilworth-Anderson and Gibson 2002; Henderson 2002; Henderson and Traphagen 2005; Hendrie 2006; Whitehouse, Gaines, Lindstrom et al. 2005).

A third strand in the writings, relates to how dementia has been conceptualised at different historical moments. For example, Boller and Forbes, refer to the zeitgeist of the Middle Ages where ‘dementia did not inspire much interest or concern’ due to the pervasiveness of mystical or punitive explanations for ‘the mysterious forces of nature’ (Boller and Forbes 1998, p. 125). ‘Supernatural’ causes for ‘dementia’ can be found in some of the literature on differing explanations for dementia today (Henderson and Henderson 2002).

A fourth strand in the literature, concerns the problem of what to do with affected individuals whose behaviours fall outside the limit of normative acceptability. Berchtold and Cotman’s (1998) observations of the often fine line between ‘mental disorders and senile dementia’ comes back to Pollitt’s finding of a ‘threshold’ whereby ‘behaviours flouting certain cultural norms could not be tolerated within a community’s normative functioning’ (1997, p. 158).

In Lawrence Cohen’s introduction to, Thinking about Dementia (2006), he writes of ‘the age of Alzheimer’s’ as ‘the age of the total biologisation of senility’ (p. 7). However, the language of ‘biologisation’ can only happen in a world of technological advancement, where the capacity to see inside the human body allows us to conceptualise things in ways that were previously unseen and uncomprehended. This ability to see things - the brain, its plaques and tangles - in ways we couldn’t do so before contains a contradictory impulse.

On the one hand, there is the promise of gaining mastery of the disease process and its manifestations. On the other, we come face to face with an existential dread, in that, if ‘science’ - as the arbiter of reason and progress - tells us there is no cure for dementia, where does this leave our sense of agency in dementia’s advancing progression? Moreover, what kinds of words are left in a technological age to describe ‘dementia’ as a living experience?

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Senility and old age in Aboriginal society

Problems with memory and changes in thinking and behaviour in old age are not in themselves new phenomenon for Indigenous populations. What is new is the naming of memory loss, behavioural change and cognitive confusion in the elderly as a disease of the brain, as well as, its increasing visibility as dementia and Alzheimer’s disease in families, communities and the popular press.

Very little is in fact documented about senility in pre-colonial and traditional Australian Aboriginal society. As noted by the medical anthropologist, Janice Reid, “there has been no systematic study of the roles, status or treatment of the aged in an Australian Aboriginal society” (Reid 1985, p.69). Ethnographic accounts of ageing in Reid’s study of the Yolngu of Arnhem Land in the Northern Territory of Australia, paints a picture of ‘a generally solicitous care towards the frail elderly, with few references to senilicide’. Reid’s detailed ethnographic account leads her to conclude that while, ‘the values and cultural ideals which surround old age constitute an important backdrop to the ageing experience’, they ‘do not determine its actual course’ (Reid 1985, p. 92).

This astute observation is particularly relevant today in understanding the social and political complexities surrounding caregiving. These include, demographic changes in family and society which impact on the type and location of care for the frail elderly; disruptions to family connectedness as a result of past policies and practices, such as, forced assimilation and removal of Aboriginal children from their families and communities; as well as, ongoing consequences of modern forms of racism and marginalisation on the health and wellbeing of families impacting their capacity for caregiving in an increasingly complex world. Attention to the ‘actual course’ that forms of caregiving have taken over generations, also provides a way into understanding transformations in, what were once regarded as marginal caregiving practices in the care of older people (such as their removal from the family home and placement in a nursing home), to its more widespread occurrence in contemporary Aboriginal society today (Brooke 2011; Cotter, Condon, Anderson et al. 2011).

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Nonetheless, the significant point to grasp regarding the values and cultural ideals of caregiving and its ‘actual practices’ shows up the theme of entanglement between the individual story and the wider group narrative that threads through this inquiry (Mankowski and Rappaport 2000). In this space of ‘being-in-the-world’, the words of Aboriginal poets, as ‘society’s essential thinkers’, offer a glimpse into the meanings of old age in a changing world. The following poem by Oodgeroo Noonuccal (formerly known as Kath Walker) illustrates the power and poignancy of this change.

Last of His Tribe from My people: a Kath Walker collection, 197053

Change is the law. The new must oust the old. I look at you and am back in the long ago, Old pinnaroo lonely and lost here, Last of your clan. Left only with your memories, you sit And think of the gay throng, the happy people, The voices and the laughter All gone, all gone, And you remain alone.

I asked and you let me hear The soft vowelly tongue to be heard now No more for ever. For me You enact old scenes, old ways, you who have used Boomerang and spear. You singer of ancient tribal songs, You leader once in the corroboree, You twice in fierce tribal fights With wild enemy blacks from over the river, All gone, all gone. And I feel

53 Available at: http://www.poetrylibrary.edu.au/poets/noonuccal-oodgeroo First Accessed: 8 March 2014 173

The sudden sting of tears, Willie Mackenzie In the Salvation Army Home. Displaced person in your own country, Lonely in teeming city crowds, Last of your tribe.

This brings to mind the ‘memorialising function’ of narratives of dementia and old age in society which Randall (2008; 2009), and Kenyon, Bohlmeijer & Randall (2011), argue is an important part of ‘narrative identity and narrative care’.

In the remainder of this chapter, I extend some of these ideas relevant to Heidegger’s notion of ‘epochal, world disclosure’ to the experience of caregiving, ageing and dementia for Aboriginal families in contemporary times. I use a participant’s situated, colloquial expression as a means of working with the Heideggerian idea that ‘language speaks the world’. This draws also on Gadamer’s central proposition in his landmark work, Truth and Method (2004), that ‘it is in language that understanding is realised’.

Further, in considering Kompridis notion of ‘‘Being’, in relation to our time’ (Kompridis 2006), I consider how the experience of disruption and crisis in caregiving, ageing and dementia in families can draw from ‘everyday’ conceptions in light of ‘tradition and renewal’ for the future.

Finally, I consider the ‘historical, epochal idea’ of ‘being sending itself to its destiny’ (cf. Bartky, 1979), as a way of deepening understanding by revealing what is at stake for Aboriginal family caregivers in light of the challenges of 21st century ageing and dementia, a discussion I began in part A of this chapter.

What I am seeking to unveil is what shows up as significant for Aboriginal caregivers in the navigation of these fundamental changes.

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‘She sings out … and no-one comes’

A single idiomatic phrase becomes a significant ‘event’ in this narrative telling. I use the word ‘event’ purposively to denote the meaning of the German word, Ereignis, in Heidegger’s lexicon to convey a process by which something meaningful about experience ‘comes into view’ (Polt 2005). In this appearing, something is disclosed as against something else.

In my third interview with Doreen, we move towards a deeper understanding. Her mum is now in a nursing home and this is where she will remain until the end of her days. Her increasing frailty means she can no longer walk independently and she wakes frequently throughout the night requiring help with toileting. Doreen is consumed by feelings of guilt that her mum is now in the nursing home but her need for twenty four hour care has worn Doreen out. She goes each day to check on her mum, to see if they are looking after her properly.

She wonders how it is possible for staff to care for so many old people; to notice the signs she knows intimately signalling something is wrong. There is something weighing on her mind. She tells me at her last visit about an old lady in the bed next to her mum’s who, “sang out but nobody came”. If they don’t come in to see this lady, and I’ve been here for hours, what do they do for my mother? I feel Doreen’s disquiet.

I notice something about the expression, ‘the old lady sings out’. It is an unusual turn of phrase in the idiom of the English language. It sounds strange and unfamiliar to my ear. I take it to mean, ‘the old lady calls out’, by which is meant, she needs something but no-one comes; or her needs are unmet; she is ignored. On the face of it, this seems to capture the distrust Doreen feels for nursing homes in light of her concern for her mother. She has already described to me the perfunctory nature of the caregiving routine in the high care ward as she sees it.

This is a place where staff get people out of bed, shower them, put them back to bed, place them into a wheelchair, and so on. Worse still, it is the place where, for Doreen, her mother’s ‘dementia’ comes into view. We put her in the nursing 175 home and it’s only got one level of care where they don’t walk around and they’re all in wheelchairs. But I know she’s going to end up with dementia. She hasn’t got it now because her body’s weak but her mind is so strong. But I think she’s just going to sleep away with it, with her mind, the knowledge she has; and that’s what I am really worried about.

In this description of Doreen’s dread with her mother’s placement in the nursing home, I see what the cultural anthropologist, Lawrence Cohen, conceptualises as ‘the existential figure of senility in the twentieth century’ (Cohen, in Leibing and Cohen 2006, p.5). In this view, ‘senility stands as a problem of biology and of life, but not of the subject; for the subject no longer speaks’ (2006, p.5). In this place of elderly domicile, there is a vision of what we become but not who we are or what we embody. It is a future we don’t recognise.

‘You sing out … to let them know you are here’

Then again, there is more to this story. I return to Heidegger and Gadamer to understand how disclosure happens ‘in and through’ language. For Heidegger, the world is both visible and hidden and it is out of this space that something like ‘truth’ emerges (Harman 2007, p. 138). For Gadamer, it is ‘in language that human culture finds expression’, but, as Dermot Moran points out, ‘things other than language come to be in language’ (Moran 2000, p.282).

A few months following my initial disorientation over the use of Doreen’s phrase, “she sings out …” as the means of expressing concern for her mother’s wellbeing in the nursing home, this expression of speech appears again. This time, it is in the context of a different conversation.

I have tuned into the National Indigenous Television channel (NITV). On the screen there is a program about a group of teenagers experiencing a range of behavioural and social problems who have been taken into ‘Country’ by Aboriginal mentors to give them a sense of their cultural identity: who they are and where they have come from. Discussion is taking place about the notion of

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‘Country’ and the protocols surrounding it. The mentor throws out to the group if anyone can tell him why, when Aboriginal people visit someone else’s country, ‘they sing out’. Getting no clear response he explains its significance. He tells them, ‘You sing out to let them know you are here’. It is part of the ceremony for announcing your arrival and being welcomed into another’s Country. By acknowledging Country you pay your respects and recognise that you are on someone else’s land. In Muecke’s (2004) terms, this is both ancient and modern practice.

I think immediately of Doreen’s use of the expression, “She sings out …” and something is illuminated. Her choice of words is neither random nor disordered. They are ‘Aboriginal ways of using English’, as the sociolinguist, Diana Eades, defines54. “Singing out” is a ‘communicative strategy containing cultural conceptions’ about what it means to exist in a world with others (Eades 2013, p.3).

These are words which in Gendlin’s terminology, ‘feel right’, as they involve ‘knowing how to use them understanding all the complexities of the situations governing their use’ [my emphasis] (Gendlin, quoted in Natanson 1973, p.284). Doreen’s use of this phrase is in this context very well-judged. They are words deeply rooted in an Aboriginal cultural conception.

‘She sings out’: moving from one mode of caregiving to another

In Gadamerian terms, I approach Doreen’s account of the old lady ‘singing out’ with an initial understanding which turns out to be an initial misunderstanding (Moran 2008, p.278). At the time, I see the literal meaning of the words themselves in my cultural lexicon. What I fail to see is the deeper ontological significance of this expression of speech, which discloses not only a particular cultural world, but a way of being in relationship to this world. In the practice of ‘singing out’, you announce your arrival, and in turn, are welcomed into another’s place. The words contain a cultural conception of journeying from one place to another and a protocol for managing this transition. It dawns on me

54 ‘Aboriginal Ways of Using English’ is the title of Eades’s book (2013). Op cit. 177 that this metaphorical idea should be informing all aged care and dementia services.

I am now ‘an interpreter’ seeking the ‘intention’ of Doreen’s ‘text’ in light of our conversation in the situated context of the nursing home (Moran 2000)55. It is a journey from a familiar landscape - her mother’s home surrounded by family, home cooked meals and a place of ‘yarning’ - to one that feels strange and unwelcoming. I revisit Doreen’s words: It’s being in a place like that where you just go to die. Your family is not around you and you’ve got strangers next to you in the bed and it’s not what she is used to. I wanted to look after her at home. I wanted her to pass away here in her own place… I don’t know how you could change it but it’s your family that has to be there to help; to help with growing old and to talk about family when she was little and how she always used to talk about things from her childhood and it would make her feel good you know. But in these places there’s just nothing. There’s no flow in the place with family. It’s just hopeless.

Doreen has entered into the estrangement of moving from one mode and location of caregiving to another. What is being disclosed is the ‘existential ground’ of caregiving in the nursing home which is here experienced as a state of ‘placelessness’ or ‘homelessness’. It is the ‘estrangement’ that Heidegger talks about when we enter into a mode of ‘being’ that is unfamiliar to us, but which as Bartky asserts, ‘contains a certain comprehension of that which is fundamental to a historical epoch’ (1979, p. 214).

I think about Doreen leaving her mum in the nursing home and returning alone to her mother’s place where she now lives. I recall the words from our initial conversation on the telephone. ‘I’m sort of isolated. I don’t know what to do with it. And then we have our loved ones, our ancestors. I need to find my place’.

In this moment of estrangement, who is Doreen in the caregiving relation? When you first go into the nursing home, she tells me, they’re all smiles. But now they don’t look at you. They are so busy I suppose.

55 See, for example, Moran’s discussion of the hermeneutic tradition in Gadamer, Moran 2008, Op Cit.: 271-276 178

There is something deeply significant showing up in the placement of Doreen’s use of the colloquial phrase, ‘singing out’, in the context of her overall narrative account. I circle back to the point at which I entered this narrative and an expanded horizon of understanding comes into view. In this mode of caring, Doreen is as Polt writes, ‘“someone” unsettled, encountering “something” unsettled’’ (2005, p.378). As the Heideggerian scholar, Richard Polt suggests, “such an experience is still one’s own, but who one is has temporarily become a problem” (Polt 2005, p.378).

When Doreen proclaims of the nursing home experience, in these places there is nothing, she is in fact coming face to face with ‘something’: namely, what is at stake for her and her community regarding deeply held values and beliefs about caring for much loved family elders. It is in this space of disclosure that Doreen’s ‘mood’ of anxiety and despair marks a turning point for herself in ‘needing to find my place’; and as with the grappling of many others when faced with this dilemma, marks that moment of confronting how we come to know ourselves in this modern ‘world’ of caregiving.

Summary and conclusion of the chapter

In this chapter, I have used an artwork, ‘Trek of hope for a dementia cure’; ‘concrete’ descriptions of the lived relation of caregiving; and the use of a vernacular phrase to disclose a number of ways in which a ‘world’ can be disclosed. This draws on ideas in Heidegger’s thinking that resonate for caregivers in an Aboriginal world of ageing and dementia.

Firstly, the function of ‘works’, by which is meant, expressions such as art and poetry, disclose something of the way in which human beings ‘dwell’ in their world.

Secondly, ‘Art’ in its broadest sense as ‘cultural works’, embodies a ‘thinking that memorializes and responds’56, a quality evident in the poetry of one of

56 See Alfred Hofstadster’s introduction to Heidegger’s Poetry, Language, Thought (1971), Op Cit. 179

Aboriginal society’s ‘essential thinkers’, Oodgeroo Noonuccal, whose writings resonate with the mood of this chapter.

Thirdly, the distinctions between the aesthetic dimensions of art and poetry and ways in which ‘works’ show up what is significant for ‘being’.

Finally, in showing up what is significant in these ‘works’, we see not only how we live, but also how the ‘concrete’ aspects of our lives, link to a historical- temporal destiny. In these respects, ‘works’, that is language, art and poetry, hold the capacity to disclose a ‘world’, which as Bartky writes (1979, p.213), illuminates ‘what beings there are and how these beings are, in the manner of their existence and of their relationships to one another’.

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Chapter Six

Concluding discussion: thesis writing as an act of ‘emplotment’

Introduction

I begin this concluding discussion as with all the other chapters with a dilemma. How do you write a conclusion for a hermeneutic inquiry where meaning resides in the relational spaces of disclosure itself? On the one hand, the richness of meaning is shown in the interpretive nexus between me as researcher, participants and the phenomenon of inquiry. On the other, meaning regenerates in the interpretive possibilities between the thesis text and the reader (Loftus & Trede 2009, p. 61; Jones 2010), suggesting the idea of a conclusion is somewhat paradoxical. This aspect, it is argued, is the ‘hermeneutic strategy’ of the inquiry (Allen quoted in, Jones & Borbasi 2003, p. 94) which entails a concluding discussion speak to the significance of this kind of ‘data’ for research and practice.

In bringing together the elements of this research endeavour, I am consciously engaged in a process of ‘plotting out’ a concluding narrative that has coherency to it. This is akin to Ricoeur’s notion of narrative ‘emplotment’, which as Jones (2010) argues, contains a three-fold synthesis. These include, “a gathering together of multiple incidents and events into a unified and complete story; a gathering of contingent factors into a totality which grants concordance to discordance; and a mediation between a mere succession of incidents into a temporal reality” (Jones 2010, p. 50).

In this chapter I experience my writing as described above. It is a configuring process beginning with what Gannon describes as the ‘implicit structure’ (2009, p. 81) of my own experiencing in giving shape to the unfolding research

181 narrative and ending with my reflections on the power of the thesis to continue on its interpretive and affecting journey.

In between is ‘the long hermeneutic detour’ (Kearney 1996, p.1) which I as researcher must take to address the existential disruption which is a necessary condition for working with and through the dilemmas and complexities that research and practice in a post-colonial world brings forth.

The ‘hermeneutic detour’ charts the way I move through the scholarship for this thesis in a process of reflexivity. In Heidegger’s hermeneutics, reflexivity is encapsulated by the concept of the hermeneutic circle: a process of grappling and sense making embedding constituent parts into a whole through their referential meaning in relation to each other and to the totality of meaning. It interweaves my experience and meaning as researcher with the experience and meaning of participants which become the ‘findings’ and the learnings from the thesis.

In the hermeneutics of Hans-Georg Gadamer, reflexivity is captured by the notion of a ‘fusion of researcher and participant horizons’ through an exploration of the ontological nature of language as social relation (Moran 2000), as exemplified in the dialogical encounter which I describe in Chapter Four, part C.

In the critical philosophy of Paul Riceour, the idea of ‘the long hermeneutic detour’ extends hermeneutic phenomenology’s relevance to issues of political alterity in ways that foreground the temporal, historicised nature of existence (Kearney 1996; Kemp and Rasmussen, ed., 1989). In this view, my thesis displays the meeting points between existentialism, hermeneutic phenomenology and narrative as they come together in the embodied and ‘situated’ accounts between me and participants in a broader historical narrative. These differing accounts of reflexivity provide the thesis with a scholarly language for capturing the lived experience of my engagement in the research. In turn, it is the living experience of the research practice that brings these hermeneutic conceptions to life.

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Enframing the study

In the study’s ‘controlling idea’57, that we go about our daily business as a ‘concealed presence’, I draw attention to the philosophical and methodological framing for this thesis in Heideggerian thought. I utilise the metaphor of ‘shadow and light’ as a poetic lens to illuminate the interplay of revealing and concealing that threads through this inquiry at a number of levels.

Firstly, it refers to the elusive quality of dementia itself. In its earlier stages, a ‘now you see it, now you don’t’ phenomenon in the way the illness manifests illustrating the ‘grey area’ between normal ageing and mild to moderate cognitive impairment. In its later stages, there is the simultaneous presence and absence of the person with dementia who is physically there but often no longer recognisable as their former self. Secondly, it refers to the ‘darkness and light’ in the sorrows and joys lived through by intimate family members who struggle to come to terms with what is happening to their family member and to themselves in the experience. Thirdly, it references the transition from life into death (from light into ‘shadow’), or as a release from suffering into death - in the words of one of this study’s participants, to ‘be taken into the light’. Fourthly, it describes the philosophical and methodological framing of this thesis, namely, existential hermeneutic phenomenology. It signifies the simultaneous revealing and concealing of our ‘being’ and the elusiveness of phenomena when on the one hand, they are hidden from our awareness and on the other, in how they appear to us after reflective thought (Harman 2007). This process of ‘emerging from the shadows’ is integral to the philosopher, Martin Heidegger’s, scholarly explorations of the question of ‘being’ itself, a ‘being’ that is always already in the world. This ‘being-in-the-world’ is synonymous with human existence but as the scholar Graham Harman points out, “not as viewed from the outside of that existence”; it is existence immersed in a ‘concrete, historical reality’ (Harman 2007, p. 32). This brings me to a fifth use of ‘shadow and light’ in this thesis, one argued by Lewis Gordon (2000), as an existential metaphor for ‘being’ and

57 The phrase ‘controlling idea’ is ubiquitous in the writing context. It refers to the main thematic thread that is being developed throughout the writing, as is the case in this study. The following explanation is useful too: ‘a controlling idea is an idea that arouses the reader’s curiosity and makes them ask a question’ cf. http://palc.sd40.bc.ca/palc/Archive/writingtips/controllingidea.htm;

183 its corollary ‘non-being’ in relation to the colonial encounter and the existential condition of alterity or “otherness”.

In each chapter, I disclose my experience of the research process in an Indigenous ‘world’ of age related decline and dementia which I explore philosophically (Chapter Two) and methodologically (Chapter Three) and which I illuminate contiguously in the meaningful relation of research and dementia (chapters Four and Five) which I display in a variety of textual modes.

These include the use of concrete phenomenological writing, stories of ontological-existential significance, narratives of relational meaning, colloquial anecdotes of interpretive significance; and the power of an Indigenous artwork depicting the brain and dementia to manifest, articulate and reconfigure what shows up as significant in an Indigenous ‘world’ from that of the researcher- scientist in her ‘world’.

These living breathing texts of life which I reanimate through my own embodied engagement with the ‘data’ of experience ‘speak the world’ in the ontological, temporal and historical sense described by Heidegger, Gadamer and Ricoeur in their seminal works58.

The study therefore stays close to how the ‘world’ is experienced as a way into how the ‘world’ is known. It dwells first and foremost in the ontological rather than the epistemological realm of human experiencing thereby disclosing itself as an existential hermeneutic phenomenological thesis text (Jones and Borbasi 2003, p.87). Narrative is invoked in the sense used by the French philosopher, Paul Ricoeur, to illuminate the place of time and history in the meaning making process (Ricoeur 1980).

A further significance in the ‘controlling idea’ of revealing and concealing that threads through this thesis is that its narrative texts pivot around the experience of crisis and dwell in the disruptions between ‘self’, ‘other’ and ‘world’. In this sense, crisis is the leitmotif of this study which, as with ‘shadow and light’, is

58 I refer here to Heidegger’s, “Being and Time” (1962), op cit.; Heidegger’s, “Poetry, Language, Thought” (1971), op cit.; Gadamer’s, “Truth and Method” (2004), op cit.; and Ricoeur’s, “Time and Narrative”, volume 3 (1988); The University of Chicago Press, Chicago 184 illuminated philosophically, methodologically and narratively in disclosures of existential-ontological significance.

In this study, ‘crisis’ is utilised in a Heideggerian perspective to indicate the way in which it ruptures the pre-reflective stance of going about daily business in the usual way. It is shown in participant accounts of the signs of dementia which signal a family member’s behaviour as odd or out of the ordinary; through the crisis that ensues in the clash between two ‘referential worlds’ as recounted in the narrative, ‘tears and confusion in the diagnostic encounter’ (Chapter Five, part B). It is evocatively drawn in participant accounts of the mood of dread and the experience of crisis in placing a much loved family elder into nursing home care, a finding echoed in the embryonic literature on Aboriginal preferences for caregiving (McGrath 2008; Smith, Flicker & Shadforth et al. 2011).

In these existential states of ‘being-in-dementia’ arise the moods and disruptions that foreshadow the necessary estrangement of ‘being’ in a ‘place’ or condition of ‘strangeness’ that prefigures a refocusing or gradual acceptance. Whether as this study discloses in Chapter Five, contending with who one is as a family carer in the alienating environment of a nursing home; or with how one is to go on in the face of the kind of loss experienced in ‘dementia’s’ unravelling of a family member’s connection to their intimate and social world.

Facing ‘otherness’

To enter into the kind of ontological ‘estrangement’ being described in this study is to confront the existential condition of ‘otherness’ between ‘self’, ‘other’ and ‘world’. This methodological approach is strengthened by the scholarship of Fredrik Svenaeus, whose work I cite in this thesis and whose approach to the study of illness in the discipline and practice of medicine and health employs this methodological lens.

Svenaeus (2011) frames being-in the experience of health and illness as existential conditions of ‘homelike’ and ‘unhomelike’ ‘being-in-the-body’ as a way to metaphorically describe the experience of the body in illness in its

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‘otherness’. As in the approach to researching ‘dementia’ in this study, Svenaeus uses the concept of ‘otherness’ to elucidate the meaning at the core of the experience of an illness.

While this study does not address the ‘dementia’ experience for those with the illness as Svenaeus’ research does, it discloses this existential condition through the reflected prism of a family carer’s experience, which in turn, draws the family carer ever deeper into these spaces of estrangement.

This connection between carer and dementia sufferer is a feature of the caregiving literature more generally, in which the role of the caregiver is vital to the quality of life of the person receiving the care (Brodaty 2009; Paul 2002). Brodaty describes the caregiver as the ‘invisible second patient’ (2009, p.217), supporting the salience of the theme of visibility and invisibility that threads this thesis.

Drawing on Brodaty’s concept of the caregiver as the ‘invisible second patient’, this study extends Svenaeus’ metaphorical analogy of ‘homelike’ and ‘unhomelike’ ‘being-in-the-world’ from a ‘bodily’ experience of health and illness (in this case dementia), to denote its meaning for the family carer in the following ways. Firstly, in describing the existential condition of ‘familiarity and strangeness’ ‘being-in’ the intimate relational space of dementia. ‘She’s not like she used to be’; ‘He isn’t the person I married all those years ago’. Secondly, it extends Svenaeus’ metaphorical analogy of ‘homelike’ and ‘unhomelike’ ‘being-in-the-world’ to the experience of ‘caring-in-place’ (at home or on Country) as an existential condition of ‘homelike-ness’ in the world; and its reverse in the experience of caring in the estranged surrounds of the nursing home as a condition of ‘unhomelike’ ‘being-in-the-world’, or ‘caring out of Place’. Recalling a participant narrative, ‘in these places there’s just nothing; they don’t understand her culture…how she feels inside herself … in her heart and in her soul and in her whole body …At home you’d get up have a cup of tea together and then something could come from that and even if she didn’t want to talk it was still connecting with each other’.

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Here the conception of familiarity (‘homelike-ness’) and estrangement (‘unhomelike-ness’) as experienced by the family caregiver expresses the existential polarity ‘being-in-a-world’ with dementia. To expand on this theme, in this study meaning arises from the experience of ‘otherness’ in the following ways:

 As an existential state of ‘otherness’ which the elder enters as they slide deeper into the embodied state of ‘dementia’  As an existential state of ‘otherness’ which the carer enters as they confront changes which disrupt and challenge the ‘ordinary everyday’ of intimate relating  As an existential state of ‘otherness’ arising from disruptions to ‘caring in place’ which characterises the existential experience of nursing home placement (which I explore in depth in Chapter Five)  As an encounter with ‘otherness’ in the historical sense of an encounter with ‘an Other’ in the state of ‘alterity’ that defines the experience of difference in the post-colonial research encounter (which I explore in depth in chapters Two and Three).

This study builds on the research of Todres and Galvin (2006), and Galvin, Todres and Richardson (2005), in exploring dementia as a relational experience. Whereas their research foregrounds the carer as a ‘liminal figure’ and ‘intimate mediator’ between the ‘private world of suffering in Alzheimer’s’ and the ‘public world of health and social care’ (2005, p. 2), this study approaches the relational experience of dementia through a series of existential polarities which, as in their research, illuminate a complex caregiving journey.

In addition to the polarities of ‘familiarity and estrangement’ and caring in ‘homelike place’ and ‘unhomelike place’ this study discloses five themes of existential struggle in the narratives of family caregivers in this study. These are struggles which revolve around the opposing forces of:

 Embracing and resisting fate  Grappling with what is ‘right’ and what is possible  Treading precariously through loss and acceptance

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 Wrestling with being a person always caring for others and being a person worthy of being cared for  Negotiating the tensions and responsibilities of competing family relations.

Yet, this study adds another layer of complexity to the dementia caring story. Intersecting the ‘private’ and ‘public worlds’ of ‘being-in-dementia’ are the intercultural worlds between non-Indigenous researchers as ‘researchers-in- the-world’ and families in an ‘Indigenous world’.

The encounter with ‘otherness’ in this study therefore, introduces a new dynamic into the phenomenological equation, one raised by the Heidegger scholar, Fred Dallmayr, who describes the task of hermeneutics as negotiating a passage ‘between absolute universalism and particularism’ (2009, p. 23). In navigating the tensions between universality of experience and existential ‘situatedness’, between ‘sameness and difference’, we find existential hermeneutic approaches offering a concept and language for navigating the tensions of difference that characterise immersion in post-colonial dilemmas of contemporary research practice, such as I disclose in chapters Two and Three.

What this study offers to the literature in the field is a hermeneutic phenomenological interpretation of the experience of caring and dementia in an Indigenous non-Indigenous cross cultural health encounter. This shifts the focus from cultural categories for researching indigenous experience to a focus on the interplay between ‘referential worlds’: those of the researcher in her world and of participants in their experiential world. Further, it advances an existential hermeneutic approach to learning from difference in a process of practice based reflexivity. It is a circle of disruption and reframing as shown in Figure 3.

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Figure 3: Circle of disruption and reframing

The invisible and the visible

In the thesis’s ‘controlling idea’ of ‘being as a concealed presence’ attention is also drawn to two realms of existence. In the context of research this translates into two distinctive but interrelated domains of inquiry - a visible or ‘ontic’ realm and an invisible or ‘ontological’ realm.

In this study, narrative accounts of the caregiving experience emanating from the ontological or ‘invisible’ realm of experience bring to light the state of ‘dwelling in a set of concerns’.

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In contrast to these more ‘invisible’ realms of human experience, participant accounts emanating from the ‘concrete’ realm of experience are the acts of care- giving itself that are visible for all to see. There is a liminal space between the ‘invisible’ and the ‘visible’ where the unseen experience being held emerges imperceptibly into the relational space of the interview encounter.

From the vantage point of the researcher or care professional there are a number of questions to ask of oneself as a guide for achieving greater attunement to these distinctive realms of experience. These include:

 What is being foreground in the telling?

 Which domain of experience am I speaking to?

 How do I ‘speak to’ these distinctive domains of experience?

 What is required of me to open up to these differential conversations?

 How do I read ‘invisible’ experience (‘Care’) through the realm of the ‘visible’ (the acts of caregiving)?

Figure 4 presents these distinctive yet interrelated domains of inquiry within a caregiving space for entering the existential-phenomenological world of the carer. As the figure shows, while one can pose the same questions to these dual planes of inquiry need is met in different ways.

The notion of ‘Care’ deriving from its roots in Kierkegaard and Heidegger’s philosophies to denote ‘care and concern’ – either in the ‘individualised and psychological sense’ (Kierkegaard) or in the ‘abstract and ontological sense’ (Heidegger)59 – has become emblematic for a tradition of scholarship in the health and social sciences, and the caring sciences in particular, that seek understanding for the lived experience of health and illness, ethical comportment and practical wisdom (Benner 1994; Benner, Tanner & Chesla 2009).

59 See, Warren T. Reich, “History of the Notion of Care”, Encyclopaedia of Bioethics. Revised edition. Ed. by Warren Thomas Reich. 5 Volumes. New York: Simon & Schuster Macmillan, 1995. Pages 319-331; Accessed from the Georgetown University webpage: http://care.georgetown.edu/Classic%20Article.html; 1 August 2014 190

Figure 4: Dual dimensions of caregiving: visible & invisible domains of experience

In Kleinman and van der Geest’s notion of ‘care’, care is a ‘moral and existential value for health care practice’ required for ‘remaking a moral world of medicine’ (2009, p.159). This is a similar conception to Svenaeus’ (2000; 2006) project in probing the ‘world’ of medicine for its relevance to the ‘world’ of the patient.

In Todres, Galvin and Dahlberg’s (2007) notion of care they explicate the concept of ‘life-world led care’ in their quest for a ‘humanising philosophy’ of health care practice. Underpinning these philosophical approaches to care is the practice of ontological reflexivity that drives the quest for ‘professional attunement’ (Benner and Wrubel 1989) and which arise from a Heideggerian notion of ‘Care’ as ‘concernful’ existence.

In this study, ‘care as concern’ is disclosed not only as ‘care for the carer’ and ‘care for the dementia sufferer’, but significantly, as ‘care for the context of

191 concern’. For in Heidegger’s mode of ‘dwelling in concern’ we find the historical suffering engendered by colonization and its aftermath which overlays the meaning of ‘dwelling in Care’ in an ‘Aboriginal world’. This distinction underscores what Tomkins and Eatough differentiate as the ‘contextual and temporal’ modality of Care as opposed to the ‘a priori and essential modality of Care’ inherent in Heidegger’s multiple meanings of Care (2013, p. 4).

These struggles go infinitely deeper than the ‘nuts and bolts’ of providing caregiving services to family members. They are attempts to make sense, at the ‘being’ level, with what is going on in their lives and with how they are going to deal with it. These are narratives of Care in the Heideggerian sense of a ‘dwelling in a set of concerns’, which is also to recognise that carers are grappling with the very meaning of their ‘being’ – in a historical, temporal sense - in the care-giving relation.

There is much at stake in this grappling as carers weigh up who they are as people, as well as, who they are as ‘a People’. Their circumstances as a colonized people beckon them to honour both the individual with dementia as well as the history embodied in those individual’s personal struggles. They weigh up the importance of their heritage and values with the possibilities for and limitations of their care-giving capacities. They struggle with their own needs for survival and recognition whilst at the same time honouring the survival and recognition of cherished family elders.

In making sense of the intelligibility of the total research story which has been unfolding in this thesis I turn to the dimension of care for the ‘context of concern’.

Entering-in

In this study I enter into participant experience as in a hermeneutic circle through the existential struggles participants reveal which are foreground in their accounts of caregiving (Chapter Four, part B; Chapter Five, part B). These disclose the contesting moods of caregiving. They are narratives of disruption

192 and existential struggle which function as a fulcrum around which the carer’s experience can be made sense of in a wider field of temporal, historical and existential significance. It is the existential place of ‘being’ that gathers the many incidents and events recounted and from which sense is made in the way these move through time and place in the telling. Each carer’s account is made sense of when viewed through the prism of this existential grappling.

These existential struggles serve as universal exemplars for a diversity of carer context and circumstance. They reveal the way each carer’s passage through dementia caring is experienced as a journey of crisis or disruption. By implication, the journey of healing from this crisis is a manifold one and likewise, reflects carer diversity, preference and circumstance.

Circling around

As human beings, we attempt to make sense of our existence in a larger narrative of personal, cultural and historical significance. As a researcher, I demonstrate this sense-making as part of the unfolding analytic of this research practice which I disclose in the thesis writing.

Once immersed in the interpretive space of the interview I listen for the ontological significance of language that emerges between us. This is language as social relation where significance rests not so much in the topic of conversation – the guiding questions I set out to ask - but in attunement to the existential situation that allows what needs to be said to be heard (Moran 2000). As Hustvedt (2012) tells us, the focus on that which is ‘troubling’ is the existential place where memory, emotion and meaning are interwoven (p. 178).

What is significant here are tales of pain and resilience going back to the carer’s and the elder’s childhood which resurface in lucid and impassioned detail decades later in the space of our interview encounter. These are narrative tales demonstrating how meaning is forged in the interior and exterior landscapes of history, politics and identity as they are recalled in the “the dialogical atmosphere” (Hustvedt 2012, p. 177) of the interview room.

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We also witness what Gannon describes as ‘the effects of time’ as a ‘defining feature’ of these narratives illuminating the manner in which temporal reality unfolds (2009, p.76). In the interviews I conduct with participants the telling moves backwards and forwards in time and place, encompassing events, incidents and characters from childhood and adulthood. In these interviews, time is represented in both its chronological sense of what happened and when but also in terms of ‘phenomenological time’ in which the significance and meaning of these events and happenings express the three-fold nature of time itself: ‘what has been’ (the past), ‘what is’ (the present) and ‘what will be’ (the future) (Atkins 2003).

In this temporal framing stories from the distant and recent past emerge out of the shadows. They are anecdotes that fall outside the visible domain of care- giving but which are held in its invisible spaces. They are stories of:

 ‘Frail body and tough spirit’ in which the emotional impacts of racism, acts of humiliation and discrimination experienced by the elder and attested to by the (now) adult children are recast in narratives of strength, will and survival

 ‘being cheated by the authorities’ in which the frustrations with successive government departments are experienced as the injustice of lack of control and agency and are recast in narratives of taking control

 ‘being separated by hair and eye colour’ in which families were separated and ‘lost a lifetime together’ and which are recast as narratives of yearning for connection.

These are some of the ‘unsettling narratives’ for Aboriginal families that enter the relational space of the research interview, narratives disclosed in books such as George Morgan’s, Unsettled Places (2006), and Gillian Cowlishaw’s, The City’s Outback (2009), where the ‘past lives on in the present’.

The philosopher, Nikolas Kompridis, evokes this dimension as the challenge of ‘modernity’s relation to time’, one in which, “we are compelled to take the

194 ethical perspective of a historically accountable “future present”” (2006, p.15). This is Care for the ‘context of concern’.

Circling back

These existential struggles are not a one way street. As a result of the colonial encounter I too am entangled in participant stories and mired in disruption. I move back and forth as a researcher between the universal nature of human experience and the differential experience that arises from this historical embodiment. I struggle to comprehend the rupture in human intimacy that racism and colonisation have caused at the level of human relating. In this context, research is never just research. Dementia is never just dementia.

As Kearney, proclaims of Ricoeur’s scholarly contribution, “no approach to meaning can dispense with detour” (Kearney 1996, p.1). It takes in the circumstances of history, culture, politics and identity in the manner of a temporal, historicised existence.

Returning home

In this ‘multiple hermeneutic detour’ I circle back to my grandmother’s story of cognitive disintegration and my own unfolding comprehension of its significance as an influential narrative for shaping this research story. For what showed up as significant in her final days was shot through with memories of the seminal event of her own life and generation as the tumultuous events of her past spoke through her cognitive confusion into the present. The collective history of her ‘people’ came to be embodied in her unique story. While I witnessed this in the nursing home ward where I visited in another time and another place (see, ‘memory ‘, Chapter One) it took decades to comprehend the meaningful significance of this for my own temporal historical story.

Here history, politics and identity enter as a palpable entity for this inquiry which, as Gannon observes of the narrative project are, “the circumstances that

195 implicitly structure the narrative and are particular to the relational space of the telling” (2009, p 81). This returns me to the stance which opens this thesis inquiry where, following Jonathan Ree, ‘I stand in some relation to the meaning of ‘being’ in the question’ (1999, p. 8).

The notion of temporal historicity as a framework of understanding has deep resonance for this research as it highlights the entanglement of the individual story within a wider historical narrative (Mankowski and Rappaport 2000). In this sense, it speaks to an enmeshment between temporal ‘being’ and historical, cultural belonging, a concept that is ever present in the thematic narratives of this study. The phenomenological project embracing existential hermeneutics and narrative for ‘lived experience’ research has deep resonance and many synergies with Indigenous thought, as Struthers and Peden-McAlpine (2005) write, “bringing out significant implicit meaning of indigenous culture” (p.1264).

In this temporal historical framing, I return to William Randall’s words in denoting the hermeneutic nature of the ageing and dementia story in which he writes, ‘lies our life story, our identity story, the web of larger family stories and the community stories in which we experience our existence’ (Randall 2009, p. 323). There is much at stake in what it means ‘to be’ a carer as the acts of caregiving contain this narrative honouring.

To conclude this section of the chapter, the process of ‘emplotment’ that I draw from in framing this thesis text establishes the fine line between the ‘lived experience’ - of myself as researcher and of participants as carers - and the creative reinterpretation of that experience (Gannon 2009; Jones 2010). The thesis writing enterprise is therefore a process for both ‘disclosing and making worlds’ (Bohman 1994). Further, as Gannon writes, ”a telling is always subject to the time and place and circumstance of its telling rather than to a real truth that is simply conveyed to a listener” (2009, p. 77). This suggests the fluidity of this type of ‘data’ which is a further hallmark of the hermeneutic text.

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Concluding reflections

In this study I have taken the reader deep inside the immersive space of two ‘worlds’: the carer in an Aboriginal ‘world’ of ageing and dementia and the researcher in her ‘world’. I have shown the interplay of these two ‘worlds’ which have been brought together in both ‘disclosing’ and ‘making’ worlds.

I have provided a scholarly language for dwelling in the unsettled spaces of a complex research and health environment enlarging the meaning making possibilities for building on the nascent research into the dementia experience in Aboriginal and Torres Strait Islander communities.

In this scholarly language, I work with existential, hermeneutic and narrative elements of a phenomenological experience. In embracing the phenomenological enterprise I have illuminated what it means to be a family member caring for an older person in cognitive decline or dementia. Through these narrative accounts I have shown the many different ways to be Indigenous and experience the dementia phenomenon.

In embracing hermeneutic phenomenology as a way of ‘being-in’ the practice of research, I have dwelt in the researcher’s spaces of anxiety and discomfort being in my own and an(other)’s disruption. I have pointed to the importance of bringing existential awareness into research practice to fine-tune a sense of researcher presence as feeling, thinking, reflecting and acting players in our engagement with research and research participants. This opens up and discloses the spaces of vulnerability that characterise this ‘between’ space.

This study has contributed new perspectives and original research in an area of growing public health and community concern. It has addressed the experience of Aboriginal carers in urban communities thus redressing the emphasis in much of Indigenous research from a focus on remote living communities.

There are a number of key areas that this research can expand on and contribute to in areas of research, practice and policy. These include:

 Using notions of ‘visible’ and ‘invisible’ experience; and notions of ‘homelike’ and ‘unhomelike’ caring experience to develop a language of 197

care for nursing home environments in their engagement with carers and families

 Adding to the notions of ‘care for the dementia sufferer’ and ‘care for the carer’ this study identifies the important notion of ‘care for the context of concern’ to develop a language of contextual and historical awareness, sensitivity and attunement for professional service providers in their engagement with Aboriginal families

 Asking how the language of policy can meet the needs of ‘invisible’ experience as well as ‘visible’ experience in the dementia caring domain by developing and expanding healing spaces for families in need and crisis

 Identifying the ageing and caring needs of specific groups within the Aboriginal and Torres Strait Islander population, such as members of the Stolen Generations, who are now ageing and some developing dementia. These groups in particular, will require specific forms of engagement in a healing, nurturing and empowering space.

This thesis did not specifically address the ageing and care environment of the nursing home as a ‘world’ of experience for Aboriginal carers and their families which is a shortcoming of this study. It is hoped that the depth of immersion in the family caring space will level this deficiency.

In conclusion

While reading the writer Alexis Wright’s (2006), Carpentaria, I came across these resonant words: “It takes a certain kind of knowledge to go with the river. Whatever its mood” (p.3).

This struck me as an appropriate expression of the quality of ‘being’ I found myself in when embarking on this thesis. Using a hermeneutic lens to take research into the experience and meaning of dementia for family caregivers in an Indigenous world meant opening up to a certain kind of knowledge. In the 198 words of Alexis Wright, “it is about there being no difference between you and the movement of water as it seasonally shifts its tracks according to its own mood” (2006, p.3).

It was this sense of immersion at the depth of my ‘being’ that brought to light the metaphor of a river with its many moods. Surrendering to the receptiveness required to nurture, fine-tune and articulate the hermeneutic stance magnified the embodied states of immersion in a thesis.

It was confronting to see my own experience as ‘data’ and to recognise the inescapable ground of the lived relation of research. It was illuminating to see the place of my own meaningful experience in the formation of the research narrative; and to see the place of history, politics and identity in the inquiry. It was profoundly unsettling to set off on a scholarly journey with no clear idea of where it would take me. Yet, it was also a release to embrace a scholarship where existential disruption is viewed as a necessary condition for working with and through the dilemmas and discomforts of ‘being-in’ research in a complex space.

At times I found myself drifting with no sense of direction; at other times exploring tributaries of related inquiry. There were points of entanglement in political torrents and surges of self-doubt. Still, I revelled in the river’s many moods and the life force of its surge.

I reflected too on the willingness of participants in this study who entered into a dialogue with me around their own immersive experience in a journey of caring. In this dialogical space, we opened up to a deeper place where ‘a good conversation’ could circulate in the spaces between us. This is the excitement of the leap into hermeneutics. The encounter in meaning always delivers you to another place.

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REFERENCES

Alzheimer’s Australia (Northern Territory) 2002, Indigenous dementia project report. Available from: www.alzheimers.org.au [20 Sept 2012].

Alzheimer’s Australia 2006, Beginning the conversation: addressing dementia in Aboriginal and Torres Strait Islander communities. Workshop Report, 8-9 November, Adelaide. Available from: http://www.fightdementia.org.au/common/files/NAT/20061101-ATSI- Begining-Conversation-IndigenousForumReport.pdf [20 Sept 2012].

Anderson, W 1999, ‘Disease and its meanings’, Health and History, vol. 1 no. 4, pp. 245-249.

Anderson, W 2003, The cultivation of whiteness: science, health, and racial destiny in Australia, Basic Books, New York.

Anderson, W 2007, ‘The colonial medicine of settler states: comparing histories of indigenous health’, Health and History, vol. 9, no. 2, pp. 144-154.

Ang, I 2003, ‘Together-in-difference: beyond diaspora, into hybridity’, Asian Studies Review, vol. 27, no. 2, pp. 141-154.

Arkles, R, Jackson Pulver, L, Robertson, H, Draper, B, Chalkley, S & Broe, GA 2010, Ageing, cognition and dementia in Australian Aboriginal and Torres Strait Islander peoples, Neuroscience Research Australia and Muru Marri Indigenous Health Unit, University of New South Wales.

Atwood, B 1994, ‘The paradox of Australian Aboriginal history’, Thesis Eleven, vol. 38, no. 1, pp. 118-137.

Australian Institute of Health and Welfare 2006, ‘National advisory group on Aboriginal and Torres Strait Islander health information and data: strategic plan 2006-2008’, Australian Institute of Health and Welfare 2006.1 (cat.no. IHW 19.Canberra:AIHW).

Babbie, E 2001, The practice of social research, Wadsworth Thomson Learning, Belmont CA.

200

Bajc, V 2012, ‘Abductive ethnography of practice in highly uncertain conditions’, The ANNALS of the American Academy of Political and Social Science, vol. 642, p. 72.

Bartky, S 1970, ‘Originative thinking in the later philosophy of Heidegger’, Philosophy and Phenomenological Research, vol. 30, no. 3, pp. 368-381.

Bartky, SL 1979, ‘Heidegger and the modes of world-disclosure’, Philosophy and Phenomenological Research, vol. 40, no. 2, pp. 212-236.

Bashford, A 2000, ‘Is White Australia possible? Race, colonialism and tropical medicine, Ethnic and Racial Studies, vol. 23, no. 2, pp. 248-271.

Bauer, S & Wahlberg, A 2009, Contested categories: life sciences in society, Ashgate Publishing Limited, Surrey, England.

Baum, F, MacDougall, C & Smith, D 2006, ‘Participatory action research’, Journal of Epidemiology and Community Health, vol. 60, no. 10, pp. 854-857.

Belfrage, M 2007, ‘Why “culturally safe” health care?’ Medical Journal of Australia, vol. 186, no 10, pp. 537-538.

Benner, P & Wrubel, J 1989, The primacy of caring: stress and coping in health and illness, Addison-Wesley, Menlo Park CA.

Benner, PE (ed.) 1994, Interpretive phenomenology: embodiment, caring, and ethics in health and illness, SAGE Publications, Thousand Oaks CA.

Benner, PE, Tanner, CA & Chesla, CA 2009, Expertise in nursing practice, caring, clinical judgement, and ethics, 2nd edn, Caring Springer Publishing Company, LLC, New York.

Berchtold, NC & Cotman, CW 1998, ‘Evolution in the conceptualisation of dementia and Alzheimer’s disease: Greco-Roman period to the 1960s’, Neurobiological Aging, vol. 19, no. 3, pp. 173-189.

Bessarab, D & Ng’andu, B 2010, ‘Yarning about yarning as a legitimate method in Indigneous research’, International Journal of Critical Indigenous Studies, vol. 3, no. 1.

Bhabha, HK 1994, The location of culture, Routledge, London, New York.

201

Blum, A 2012, ‘The enigma of the brain and its place as cause, character and pretext in the imaginary of dementia’, History of the Human Sciences, vol.25, p. 108.

Boell, SK & Cecez-Kecmanovic, D 2010, ‘Literature reviews and the hermeneutic circle’, Australian Academic and Research Libraries, vol. 41, no. 2, pp. 129-144.

Bohman, J 1994, ‘World disclosure and radical criticism’, Thesis Eleven, vol. 37, p. 82.

Boller, F & Forbes, MM 1998, ‘History of dementia and dementia in history: an overview’, Journal of Neurological Science, vol. 158, no. 2, pp. 125-133.

Bond, J 1992, ‘The medicalization of dementia’, Journal of Aging Studies, vol. 6, no. 4, pp. 397-403.

Borgmann, A 2005, ‘Technology’, in A Companion to Heidegger, eds HL Dreyfus & MA Wrathall, Blackwell Publishing, Oxford.

Bortollotti, L 2008, An introduction to the philosophy of science, Polity Press, Cambridge UK, Maldon MA.

Boucher L, Carey J & Ellinghaus K (eds) 2007, Historicising whiteness: transnational perspectives on the construction of an identity, RMIT Press, Melbourne Vic.

Braun, V & Clarke, V 2006, ‘Using thematic analysis in psychology’, Qualitative Research in Psychology, vol. 3, no. 2, pp. 77-101.

Brewster, A 2005, ‘Writing whiteness: the personal turn’, Australian Humanities Review, vol. 35, June.

Brodaty, H 2009, ‘Family caregivers of people with dementia’, Dialogues in Clinical Neuroscience, vol. 11, no. 2, pp. 217-228.

Broe, GA 2003, ‘Population ageing, human lifespan and neurodegenerative disorders: a fifth epidemiologic transition’ in The Ageing Brain, ed. P Sachdev, Swets & Zeitlinger, The Netherlands, pp. 11-31.

202

Brooke, NJ 2011, ‘Needs of Aboriginal and Torres Strait Islander clients residing in Australian residential aged-care facilities’, Australian Journal of Rural Health, vol. 19, pp. 166-170.

Brookmeyer, R, Johnson, E, Ziegler-Graham, K & Arrighi, MH 2007, ‘Forecasting the global burden of Alzheimer’s disease, Alzheimer’s & Dementia’, The Journal of the Alzheimer’s Association, vol. 3, no. 3, pp.186-191.

Carey, J, Boucher, L & Ellinghaus, K 2007, ‘Historicising whiteness: towards a new research agenda’, in Historicising whiteness: transnational perspectives on the construction of an identity, eds L Boucher, J Carey & K Ellinghaus, RMIT Publishing in association with the School of Historical Studies, University of Melbourne, Melbourne, Vic, Melbourne University conference and seminar series, vol. 16, pp. vi-xxiii. Available from: http://search.informit.com.au/documentSummary;dn=8282163462032 36;res=IELHSS EISBN: 9781921166808 [8 Jun 2014].

Clare, J & Hamilton, H 2003, Writing research: transforming data into text, Churchill Livingstone, Elsevier Science Ltd.

Corbin, J & Morse, J 2003, ‘The unstructured interactive interview: issues of reciprocity and risks when dealing with sensitive topics’, Qualitative Inquiry, vol. 9, no. 3, pp. 335-354.

Corner, L & Bond, J 2006, ‘The impact of the label of mild cognitive impairment on the individual’s sense of self’, Philosophy, Psychiatry & Psychology, vol. 13, no. 1, pp 3-12.

Cotter, PR, Condon, JR, Anderson, IPS, Smith, LR & Barnes, T 2011, ‘Indigenous aged care service use and need for assistance: How well is policy matching need?’ Australasian Journal on Ageing, vol. 30, suppl. 2, pp. 38-44.

Cowlishaw, G 2005, ‘Forum on whiteness. Whitening race: a critical engagement’. Available from: http://www.kooriweb.org/foley/resources/pdfs/170.pdf [16 August 2014]. 203

Cowlishaw, G 2009, The city’s outback, University of New South Wales (UNSW) Press, Sydney NSW.

Crotty, M 1998, The foundations of social research, Allen and Unwin, Crows Nest NSW.

Cutcliffe, JR & Ramcharan, P 2002, ‘Leveling the playing field? Exploring the merits of the ethics-as-process approach for judging qualitative research proposals’, Qualitative Health Research, vol. 12, p. 1000.

Dallmayr, F 2009, ‘Hermeneutics and inter-cultural dialog: linking theory and practice’, Ethics & Global Politics, vol. 2, no.1, pp. 23-39.

Damasio, A 1994, Descartes’ error: emotion, reason and the human brain, Penguin Putnam, New York.

Damasio, A 1999, The feeling of what happens: body, emotion and the making of consciousness. Heinemann, London.

Davis, DHJ 2004, ‘Dementia: sociological and philosophical constructions’, Social Science and Medicine, vol. 58, pp. 369-378. de Beistegui, M 2008, Review Article, Jeff Malpas, Heidegger’s Topology, Parrhesia, vol. 5, pp. 73-77.

Denzin, NK & Lincoln, YS (eds) 2005, The Sage handbook of qualitative research, 3rd edn, Thousand Oaks, London, New Delhi.

Denzin, NK, Lincoln, YS & Smith, LT (eds) 2008, Handbook of critical and indigenous methodologies, Sage Publications, Thousand Oaks CA, London, New Delhi, Singapore.

Dewing, J 2008, ‘Personhood and dementia: revisiting Tom Kitwood’s ideas’, International Journal of Older People Nursing, vol. 3, pp. 3-13.

Dewitt R. 2010, Worldviews: an introduction to the history and philosophy of science, 2nd edn, Wiley-Blackwell.

Dilworth-Anderson, P & Gibson, B 2002, ‘The cultural influence of values, norms, meanings and perceptions in understanding dementia in ethnic minorities’, Alzheimer’s Disease & Associated Disorders, vol. 16, suppl 2, pp. S56-63.

204

Diprose, R & Reynolds J 2008, Merleau-Ponty key concepts, Acumen, Stocksfield UK.

Dodson, M & Williamson, R 1999, ‘Indigenous peoples and the morality of the Human Genome Diversity Project’, Journal of Medical Ethics, vol. 25, pp. 204-208.

Douven, I 2011, ‘Abduction’, in The Stanford Encyclopaedia of Philosophy, ed. EN Zalta. Available from: http://plato.stanford.edu/archives/spr2011/entries/abduction/ [5 Dec 2013]

Downing, K & Paradies 2011, ‘Indigenous cultural training for health workers in Australia’, International Journal for Quality in Health Care, vol. 23, no. 3, pp. 247-257.

Dreyfus, H & Wrathall, MA (eds) 2005, A companion to Heidegger, Blackwell Publishing Ltd, Oxford.

Dreyfus, HL 1991, Being-in-the-world: a commentary on Heidegger’s being and time, division 1, The MIT Press, Cambridge, London.

Dreyfus, HL 2005, ‘Heidegger’s ontology of art’, in A companion to Heidegger, eds HL Dreyfus & MA Wrathall, Blackwell Publishing, Oxford, pp. 407- 419.

Eades, D 2013, Aboriginal ways of using English. Aboriginal Studies Press.

Eger, M 1993, Hermeneutics as an approach to science: part 1, Science & Education, vol. 2, pp.1-29.

Ellis, C 2007, ‘Telling secrets, revealing lives: relational ethics in research with intimate others’, Qualitative Inquiry, vol. 13, p.3.

ES Mankowski, ES &J Rappaport, J DATE, ‘Narrative concepts and analysis in Spiritually‐based communities’, Journal of Community Psychology, vol. 28, no. 5, pp. 479-493.

Ferri, CP, Prince, M, Brayne, C, Brodaty, H, Fratiglioni, L, Ganguli, M, Hall, K, Hasagawa, K, Hendrie, H, Huang, Y, Jorm, N, Mathers, C, Menezes, P, Rimmer, E & Scazufca, M 2005, ‘Global prevalence of dementia: a Delphi consensus study’, The Lancet , vol. 366, no. 9503, pp. 2112-2117. 205

Fine, G & Deegan, J 1996, ‘Three principles of serendip: insight, chance, and discovery in qualitative research’, International Journal of Qualitative Studies in Education, vol. 9, no. 4, pp. 434-447.

Fine, M 1993, ‘Working the hyphens: reinventing self and other in qualitative research’, in Handbook of qualitative research, eds. NK Denzin & YS Lincoln, Sage, Thousand Oaks CA, pp. 70–82.

Fine, M 1998, ‘Working the hyphens: reinventing self and other in qualitative research’, in The landscape of qualitative research: theories and issues, eds. NK Denzin & YS Lincoln, Sage, Thousand Oaks, pp. 130-155.

Finlay, L 2002a, ‘“Outing” the researcher: the provenance, process, and practice of reflexivity’, Qualitative Health Research, vol. 12, no. 4, pp. 531-545.

Finlay, L 2002b, ‘Negotiating the swamp: the opportunity and challenge of reflexivity in research practice’, Qualitative Research, vol. 2, p. 209.

Finlay, L 2005, ‘“Reflexive embodied empathy”: a phenomenology of participant-researcher intersubjectivity’, The Humanistic Psychologist, vol.33, no. 4, pp. 271-292.

Finlay, L 2006, ‘Dancing between embodied empathy and phenomenological reflection’, Indo-Pacific Journal of Phenomenology, vol. 6, Special Edition, August.

Finlay, L 2009, ‘Ambiguous encounters: a relational approach to phenomenological research’, Indi-Pacific Journal of Phenomenology, vol. 9, no. 1.

Gadamer, H-G 2004, Truth and method, 2nd edn, translation revised by J Weinsheimer & DG Marshall, Continuum, London, New York.

Galvin, K & Todres, L 2013, Caring and well-being: a lifeworld approach, Routledge, London.

Galvin, K, Todres, L & Richardson, M 2005, ‘The intimate mediator: a carer’s experience of Alzheimer’s’, Scandinavian Journal of Caring Science, vol. 19, pp. 2-11.

206

Gannon, S 2009, ‘Writing narrative’, in Writing qualitative research on practice, eds J Higgs, D Horsfall & S Grace, Sense Publishers, Rotterdam, Boston, Taipei, pp. 73-82.

Geertz, C 1973, The interpretation of cultures: selected essays, Basic Books, Perseus Books Group, New York.

Geertz, C 2001, Available light: anthropological reflections on philosophical topics, Princeton University Press.

Gendlin, ET 1962, Experiencing and the creation of meaning. A philosophical and psychological approach to the subjective, Free Press of Glencoe, New York.

Gendlin, ET 1973, ‘Experiential phenomenology’, in Phenomenology and the Social Sciences, Vol. I, ed. M Natanson, Northwestern University Press, Evanston, pp. 281-319.

George, DR 2010, ‘Overcoming the social death of dementia through language’, The Lancet, vol. 376, www.thelancet.com

Glendinning, S 2007, In the name of phenomenology, Routledge, London, New York.

Gordon, L & Alcoff, L 2003, ‘A philosophical account of Africana studies: an interview with Lewis Gordon’, Nepantla: Views from South, vol. 4, no. 1, pp.165-189.

Gordon, LR 1995, Fanon and the crisis of European man: an essay on philosophy and the human sciences, Routledge, New York.

Gordon, LR 2000, Existentia Africana, Routledge, New York, London.

Grace, S, Higgs, J & Ajjawi, R 2009, ‘Writing phenomenologically’ in Writing qualitative research on practice, eds J Higgs, D Horsfall & S Grace, Sense Publishers, Rotterdam, Boston, Tapei.

Grossman, M (ed.) 2003, Blacklines: contemporary critical writing by Indigenous Australians, Melbourne University Press.

207

Gruen, RL & Yee, TFM 2005, ‘Dreamtime and awakenings: facing realities of remote area Aboriginal health’, Medical Journal of Australia, vol. 182, no. 10, pp. 538-540.

Guignon, C 2005, ‘The History of Being’, in A companion to Heidegger, eds HL Dreyfus & MA Wrathall, Blackwell Publishing Ltd, Oxford, pp. 392-406.

Hage, G 2003, Against paranoid nationalism: searching for hope in a shrinking society, Pluto Press, Annandale, Victoria.

Harman, G 2007, Heidegger explained: from phenomenon to thing, Open Court, Chicago & La Sal, IL.

Hayman, NE, White, NE & Spurling, GK 2009, ‘Improving Indigenous patients’ access to mainstream health services: the Inala experience’, Medical Journal of Australia, vol. 190, no. 10, pp. 604-606.

Heidegger, M 1962, Being and time, Blackwell, Oxford.

Heidegger, M 1971, Poetry, language, thought, trans A Hofstadter, Harper and Row, New York, Evanston, San Francisco, London.

Henderson, JN & Traphagan, JW 2005, ‘Cultural factors in dementia: perspectives from the anthropology of aging’, Alzheimer Disease & Associated Disorders, vol. 19, no. 4, pp. 272-274.

Henderson, JN 2002, ‘The experience and interpretation of dementia: cross- cultural perspectives’, Journal of Cross-Cultural Gerontology, vol. 17, no. 3, pp. 195-196.

Hendrie, HC 2006, ‘Lessons learnt from international comparative cross- cultural studies on dementia’, American Journal of Geriatric Psychiatry, vol.14, no. 6, pp. 480-488.

Higgs, J & Cherry, N 2009, ‘Doing qualitative research on practice’ in Writing qualitative research on practice, eds J Higgs, D Horsfall & S Grace, Sense Publishers, Rotterdam, Boston, Taipei, pp.3-12.

Higgs, J, Horsfall, D & Grace, S (eds) 2009, Writing qualitative research on practice, Sense Publishers, Rotterdam, Boston, Taipei.

208

Holroyd, AE 2007, ‘Interpretive hermeneutic phenomenology: clarifying understanding’, Indo-Pacific Journal of Phenomenology, vol. 7, no. 2.

Hughes, JC, Louw, SJ & Sabat, SR (eds.) 2006, Dementia: mind, meaning, and the person (International Perspectives in Philosophy and Psychiatry), Oxford University Press.

Hulko, W, Camille, E, Antifeau, E, Arnouse, M, Bachynski, N & Taylor, D 2010, ‘Views of First Nation elders on memory loss and memory care in later life’, Journal of Cross Cult Gerontology, vol. 25, pp. 317-342.

Hunter, E 1993, Aboriginal health and history, power and prejudice in remote Australia, Cambridge University Press.

Hustvedt, S 2012, Living, thinking, looking, Hodder and Stouten, London.

Hutchinson, SA, Wilson, ME & Wilson, HS 1994, ‘Benefits of participating in research interviews’, Image: The Journal of Nursing Scholarship, vol. 26, pp. 161–166.

Jackson Pulver, L, Haswell, MR, Ring, I, Waldon, J, Clark, W, Whetung, V, Kinnon, D, Graham, C, Chino, M, LaValley, J & Sadana R 2010, Indigenous Health – Australia, Canada, Aotearoa New Zealand and the United States – Laying claim to a future that embraces health for us all, World Health Report, Background Paper, 33. Available from: http://www.who.int/healthsystems/topics/financing/healthreport/IHNo 33.pdf

Jankelson, C 2005, An engagement with the phenomenology of leadership. Ph.D thesis, University of Western Sydney, Hawkesbury.

Jersky, M, Callaghan, L, Zwi, K, Osborne, P, Fitzpatrick, S, Haswell-Elkins, M & Freeman, N 2013, ‘Giving shape to experience in an urban Aboriginal community’, The Ngala Nanga Mai (We Dream) pARenT Group Program, vol. 3, no. 3. The Graduate School of Education, The University of Melbourne, Parkville, e-journal UNESCO Observatory Multi- Disciplinary Journal in the Arts.

209

Jervis, LL & Manson, SM 2002, ‘American Indians/Alaska natives and dementia’, Alzheimer’s Disease & Associated Disorders, vol. 16, no. 2, pp. S89-S95.

Jones, A & Jenkins, K 2008, ‘Rethinking collaboration: working the indigene- colonizer hyphen’, in Handbook of Critical and Indigenous Methodologies, eds NK Denzin, YS Lincoln & LT Smith, SAGE Publications, Thousand Oaks CA, pp. 471-486.

Jones, A 2010, ‘Oneself as an author’, Theory, Culture & Society, vol. 27, pp. 49- 68.

Jones, J & Borbasi, S 2003, ‘Interpretive research: weaving a phenomenological text’, in Writing research: transforming data into text, eds J Clare & H Hamilton, Churchill Livingstone, Elsevier Science Limited, Edinburgh, pp. 85-101.

Atkins, K 2003, ‘Paul Ricoeur’ in the Internet Encyclopaedia of Philosophy, http://www.iep.utm.edu/ricoeur/ [8 June 2012].

Kearney, R (ed.) 1996, Paul Ricoeur: the hermeneutics of action, SAGE Publications, London, Thousand Oaks, New Delhi.

Kearney, R 2004, On Paul Ricoeur: the owl of Minerva. Ashgate Publishing Company, Burlington USA.

Keen I (ed.) 1994, Being black: Aboriginal cultures in ‘settled’ Australia. Aboriginal Studies Press, Canberra.

Keller, RC 2006, ‘Geographies of power, legacies of mistrust: colonial medicine in the global present’, Historical Geography, vol. 34, pp. 26-48.

Kemp, PT & Rasmussen, D (eds) 1989, The Narrative path: the later works of Paul Ricoeur, The MIT Press, Cambridge MA, London England.

Kendall, E, Sunderland, N, Barnett, L, Nalder, G & Matthews, C 2011, ‘Beyond the rhetoric of participatory research in Indigenous communities: Advances in Australia over the last decade’, Qualitative Health Research, August.

210

Kenyon, G, Bohlmeijer, E & Randall, W (eds) 2011, Storying later life: issues, investigations, and interventions in narrative gerontology, Oxford University Press, New York.

Kitwood, T & Bredin, K 1992, ‘Towards a theory of dementia care: personhood and well-being’, Ageing and Society, vol. 12, no. 3, pp. 269-287.

Kitwood, T 1997, ‘The concept of personhood and its relevance for a new culture of dementia care’ in Care-giving in dementia research and applications, vol. 2, ed. ML Bere, Routledge, London, New York, pp. 3-13.

Kleinman, A & van der Geest, S 2009, ‘“Care” in health care: Remaking the moral world of medicine’, Medische Antropologie, vol. 21, no. 1.

Kleinman, A 1987, ‘The role of culture in cross-cultural research on illness’, The British Journal of Psychiatry , vol. 151, pp. 447-454.

Kleinman, A 1988, The illness narratives: suffering, healing, and the human condition, Basic Books (Perseus Books Group), USA.

Kompridis, N 1994, ‘On world disclosure: Heidegger, Habermas and Dewey’, Thesis Eleven, vol. 37, p. 29.

Kompridis, N 2006, Critique and disclosure, The MIT Press, Cambridge MA, London England.

Kompridis, N 2011, ‘Receptivity, possibility, and democratic politics’, Ethics & Global Politics, vol. 4, no. 4, pp 255-272.

Kontos, P & Martin, W 2013, ‘Embodiment and dementia: exploring critical narratives of selfhood, surveillance, and dementia care’, Dementia, vol. 12, pp. 288-302.

Koori Dementia Care Project (KDCP) 2013, Final report. Available from: http://dev.blacklight.com.au/dcrc/images/dcrc/output-files/805- koori_dementia_care_project_-_final_report.pdf [10 Jan 2014].

Kowal, E & Anderson, I 2012, ‘Genetic research in Aboriginal and Torres Strait Islander communities: continuing the conversation’, Discussion Paper, The University of Melbourne and The Lowitja Institute.

211

Kowal, E & Paradies, Y 2005, ‘Ambivalent helpers and unhealthy choices: public health practitioners’ narratives of Indigenous ill-health’, Social Science & Medicine, vol. 60, pp. 1347-1357.

Kowal, E & Paradies, Y 2010, ‘Enduring dilemmas of Indigenous health’, Medical Journal of Australia, vol. 192, no. 10, pp. 599-600.

Kowal, E 2011, ‘The stigma of white privilege: Australian anti-racists and Indigenous improvement’, Cultural Studies, vol. 25, no. 3, pp.313-333.

Kowal, E 2012, ‘Stigma and suffering: white anti-racist identities in northern Australia’, Postcolonial Studies, vol. 15, no. 1, pp. 5-21.

Kowal, E, Franklin, H & Paradies, Y 2013, Reflexive antiracism: a novel approach to diversity training, Ethnicities, vol. 13, no. 3, pp.316-337.

Kowal, E, Rouhani, L & Anderson, I 2011, ‘Genetic research in Aboriginal and Torres Strait Islander communities: beginning the conversation’, Discussion Paper, The Lowitja Institute and The University of Melbourne. https://www.lowitja.org.au/sites/default/files/docs/genetics_research- DP.pdf [5 March 2014].

Kvale, S & Brinkman, S 2009, Interviews: learning the craft of qualitative research interviewing, SAGE Publications, Los Angeles, London, New Delhi, Singapore.

Ladkin, D 2006, ‘When deontology and utilitarianism aren’t enough: how Heidegger’s notion of “dwelling” might help organisational leaders resolve ethical issues’, Journal of Business Ethics, vol. 65, pp. 87-98.

Lafont, C 2005, ‘Hermeneutics’, in A companion to Heidegger, eds H Dreyfus & MA Wrathall, Blackwell Publishing, Oxford, pp. 265-284.

Langton, M 2003, ‘The politics of representation’, in Blacklines: contemporary critical writing by Indigenous Australians, ed. M Grossman, Melbourne University Press, Melbourne, pp. 81-91.

Laverty, SM 2003, ‘Hermeneutic phenomenology and phenomenology: a comparison of historical and methodological considerations’, International Journal of Qualitative Methods, vol. 2, no.3, pp. 21-35. 212

Law, J & Lin, W-Y 2009, ‘Cultivating Disconcertment’. Available from http://www.heterogeneities.net/publications/LawLin2009CultivatingDis concertment.pdf [11 May 2014].

Lawlor, R 1991, Voices of the first day: awakening in the Aboriginal dreamtime. Inner Traditions International, Rochester VT.

Lee, RB 2006, ‘Twenty-first century Indigenism’, Anthropological Theory, vol. 6, no. 4, pp. 455-479.

Leibing, A & Cohen, L 2006, Thinking about dementia: culture, loss and the anthropology of senility, Rutgers University Press, New Brunswick NJ, London England.

Loftus, S & Trede, F 2009, ‘Hermeneutic writing’, in Writing qualitative research on practice, eds J Higgs, D Horsfall & S Grace, Sense Publishers, Rotterdam, Boston, Tapei, pp. 61-72.

LoGiudice, D, Smith, K, Thomas, J, Lautensschlager, N, Almeida, O, Atkinson, D & Flicker, L 2006, ‘Kimberley Indigenous Cognitive Assessment tool (KICA): development of a cognitive assessment tool for older indigenous Australians’, International Psychogeriatrics, vol.18, no. 2, pp. 269-280.

Mackenzie, J, Bartlett, R & Downs, M 2006, ‘Moving towards culturally competent dementia care: have we been barking up the wrong tree?’ Reviews in Clinical Gerontology, vol. 15, pp. 39-46.

Malpas, J 2006, Heidegger’s topology: being, place, world. Massachusetts Institute of Technology.

Malpas, J 2008, ‘New media, cultural heritage and the sense of place: mapping the conceptual ground’, International Journal of Heritage Studies, vol. 14, no. 3, pp. 197-209.

Manganyi, NC 1973, Being-black-in-the-world, Ravan Press, Johannesburg.

Marcum, JA 2008, ‘Reflections on humanizing biomedicine’, Perspectives in Biology and Medicine, vol. 51, no. 3, pp. 392-405.

Martin, G 2011, ‘The role of stories in the development of values and wisdom as expressions of spirituality’, Journal of Spirituality, Leadership and Management, vol. 5, no. 1, pp. 14-24. 213

Martin, KL 2008, Please knock before you enter: Aboriginal regulation of outsiders and the implications for researchers, Post Pressed, Teneriffe.

Martin, W, Kontos, P & Ward, R 2013, ‘Embodiment and dementia’, Dementia, vol. 12, no. 3, pp. 283-287.

McGrath, P 2008, ‘Family care giving for Aboriginal peoples during end-of-life: Findings from the Northern Territory’, Journal of Rural and Tropical Public Health, vol. 7, pp. 1-10.

McGrath, SJ 2009, ‘The interpretive structure of truth in Heidegger, Analecta Hermeneutica’, Journal of The International Institute for Hermeneutics, vol. 1, pp.46-55.

Mclean, A 2006, ‘Coherence without facticity in dementia: the case of Mrs. Fine’ in Thinking about dementia: culture, loss and the anthropology of senility, A Leibing & L Cohen, Rutgers University Press, New Brunswick NJ, London, pp. 157-179.

McMillan, F, Kampers, D, Traynor, V & Dewing, J 2010, ‘Person-centred care as caring for country: an Indigenous Australian experience’, Dementia: The International Journal of Social Research and Practice, vol. 9, no. 2, pp. 163-167.

Mendelzweig, MR 2009, ‘Constructing the Alzheimer’s Patient: Bridging the Gap between Symptomology and Diagnosis’, Science Studies, vol. 22, no. 2, pp. 55-79

Merleau-Ponty, M 1962, Phenomenology of perception, trans C Smith, Routledge & Kegan Paul, London; Humanities Press, New York.

Miller B, Glasser M & Rubin, S 1992, ‘A paradox of medicalization: physicians, families and Alzheimer’s disease’, Journal of Aging Studies, vol. 6, pp. 135-148.

Mishler, EG 1986, Research interviewing: context and narrative, Harvard University Press, Cambridge MA, London England.

Mohatt, NV, Thompson, AB, Thai, ND & Tebes, JK 2014, ‘Historical trauma as public narrative: A conceptual review of how history impacts present-day health’, Social Science & Medicine 106, pp. 128-136. 214

Moran, D 2000, Introduction to phenomenology, Routledge, London, New York.

Moreton-Robinson, A 2000, Talkin’ up to the white woman: Indigenous women and feminism, University of Queensland Press, St Lucia.

Moreton-Robinson, A 2004, Whitening race: essays in social and cultural criticism in Australia, Aboriginal Studies Press, Australia, Canberra.

Muecke, S 2004, Ancient and modern: time, culture and Indigenous philosophy, UNSW Press.

Mullens, P 2002, ‘Pierce’s abduction and Polanyi’s tacit knowing’, The Journal of Speculative Philosophy, New Series, vol. 16, no. 3, pp. 198-224.

Murphy, A 2008, ‘Feminism and race theory’, in Merleau-Ponty Key Concepts, eds R Diprose & J Reynolds, Acumen, Stocksfield UK, pp. 197-206.

Nakata, M 2006, ‘Australian Indigenous studies: a question of discipline’, The Australian Journal of Anthropology, vol. 17, no. 3, pp. 265-275.

Natanson, M (ed.) 1973, Phenomenology and the social sciences, vol. 1, Northwestern University Press, USA.

Oxford Dictionary of Philosophy 1994, p 266.

Paradies, Y 2006a, ‘Beyond black and white essentialism, hybridity and Indigeneity’, Journal of Sociology, vol. 42, no. 4, pp. 355-367.

Paradies, Y 2006b, ‘Defining, conceptualizing and characterising racism in health research’, Critical Public Health, vol. 16, no. 2, pp. 143-157.

Paradies, Y, Harris, R & Anderson, I 2008, ‘The impact of racism on Indigenous health in Australia and Aotearoa: towards a research agenda’, Discussion Paper No. 4, Cooperative Research Centre for Aboriginal Health, Darwin.

Paul, LJ 2002, Caring for dying parents: an existential phenomenological approach, PhD Thesis, School of Public Health, Faculty of Health Sciences La Trobe University, Bundoora, Victoria.

Perl, S 2004, Felt sense: writing with the body, Heinemann, Portsmouth NH.

Phinney, A & Chesla, CA 2003, ‘The lived body in dementia’, Journal of Aging Studies, vol. 17, no. 3, pp. 283-299. 215

Plsek, PE & Greenhalgh, T 2001, ‘The challenge of complexity in health care’, British Medical Journal, vol. 323, no. 7313, pp. 625-628.

Polanyi, M 1958, Personal knowledge: towards a post-critical philosophy, Routledge and Kegan Paul Ltd, London.

Polanyi, M 1962, ‘Tacit knowing: its bearing on some problems of philosophy’, Reviews of Modern Physics, vol. 34, no. 4, pp. 601-616.

Polkinghorne, D 1988, Narrative knowing and the human sciences, SUNY Press, Albany.

Polkinghorne, DE 1995, ‘Narrative configuration in qualitative analysis’, International Journal of Qualitative Studies in Education, vol. 8, no. 1, pp. 5-23.

Pollitt, P 1997, ‘The problem of dementia in Australian Aboriginal and Torres Strait Islander communities: an overview’, International Journal of Geriatric Psychiatry, vol. 12, no. 2, pp. 155-163.

Polt, R 2005, ‘Ereignis’, in A companion to Heidegger, eds HL Dreyfus & MA Wrathall, Blackwell Publishing.

Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W & Ferri CP 2013, ‘The global prevalence of dementia: a systematic review and metaanalysis’, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, vol. 9, no. 1, pp. 63-75.

Qaseem A, Snow V, Cross JT Jr, Forciea MA, Hopkins R Jr, Shekelle P, Adelman A, Mehr D, Schellhase K, Campos-Outcalt D, Santaguida P & Owens DK 2008, ‘Current pharmacologic treatment of dementia: a clinical practice guideline from the American College of Physicians and the American Academy of Family Physicians’, Annals of Internal Medicine, vol. 148, no. 5, pp. 370-378.

Radford, K, Mack, HA, Robertson, H, Draper, B, Chalkley, S, Daylight, G, Cumming, R, Bennet, H, Jackson Pulver, L & Broe, GA 2014, ‘The Koori Growing Old Well Study: investigating aging and dementia in urban Aboriginal Australians’, International Psychogeriatrics, p. 1.

216

Radford, K, Mack, HA, Wall, S & Broe GA In Press, ‘Raising awareness: dementia assessment for urban and regional Aboriginal Australians’, Australian Journal of Dementia Care. Accepted for Publication 30 April 30 2014.

Radhakrishnan, R 1993, ‘Postcoloniality and the boundaries of identity’, Callaloo, vol. 6, no. 4, pp. 750-771.

Radhakrishnan, R 2000, ‘Adjudicating hybridity, co-ordinating betweenness’, Jouvert, A Journal of Postcolonial Studies, vol. 5, no. 1.

Raftery, J 2006, Not part of the public: non-indigenous policies and practices and the health of indigenous South Australians 1836-1973, Wakefield Press, South Australia.

Ramanathan, V & Makoni, S 2007, ‘Bringing the body back: the (mis)languaging of bodies in bio-medical, societal and poststructuralist discourses on diabetes and epilepsy’, The International Journal of Critical Language Studies, vol. 4, no. 4, pp. 283-306.

Randall, W & McKim, E 2008, Reading our lives: The poetics of growing old. Oxford University Press, New York.

Randall, W 2009, ‘The anthropology of dementia: a narrative perspective’, International Journal of Geriatric Psychiatry, vol. 24, no. 3, pp. 322- 324.

Razon, N & Ross, K 2012, ‘Negotiating fluid identities: alliance-building in qualitative interviews’, Qualitative Inquiry, vol.18, no. 6, pp. 494-503.

Redwood, S & Todres, L 2006, ‘Exploring the ethical imagination: conversation as practice versus committee as gatekeeper’, Forum Qualitative Research, vol. 7, no. 2, art. 26. Available from: [10 May 2013]

Ree, J 1999, Heidegger (The Great Philosophers), Routledge Chapman and Hall, London, New York.

Reid, J 1985, ‘“Going up” or “going down”: the status of old people in an Australian Aboriginal society’, Ageing and Society, vol. 5, pp. 65-95.

Ricoeur, P 1980, ‘Narrative time’, Critical Inquiry, vol. 7, no. 1, pp. 169-190. 217

Ricoeur, P 1991, ‘World of the text, world of the reader’, in Reader: reflection & imagination, eds MJ Valdes & A Ricoeur, University of Toronto Press, Toronto, Buffalo, pp. 491-497.

Ricoeur, P 1996, ‘Reflections on a new ethos forEurope’ in The hermeneutics of action, ed. R Kearney, SAGE Publications, London, pp. 3-13.

Rigney, L-I 2001, ‘A first perspective of Indigenous Australian participation in science: framing Indigenous research towards Indigenous Australian intellectual sovereignty’, Kaurna Higher Education Journal, vol. 7, August, pp.1-13.

Roberts, C & Mackenzie, A 2006, ‘Science’, Theory, Culture & Society, vol. 23, no. 2-3, pp. 157-163.

Rose, DB 2004, Reports from a wild country: ethics for decolonisation, University of New South Wales Press Ltd, Sydney NSW.

Russo, KE, Brewster, A & Jensen, L 2011, ‘On whiteness: current debates in Australian studies’, The Journal of the European Association of Studies on Australia, vol. 2, no. 2, pp. 2-5.

Schatzki, TR 2005, ‘Early Heidegger on sociality’, in A companion to Heidegger, eds H Dreyfus & MA Wrathall, Blackwell Publishing, Oxford, pp. 233- 247.

Segal, S 1998, ‘The anxiety of strangers and the fear of enemies studies’ Philosophy and Education, vol. 17, pp. 271-282.

Segal, S 2010, ‘A Heideggerian approach to practice-based reflexivity’, Management Learning, vol. 41, no. 4, pp. 379-389.

Seidman, I (2013), Interviewing as qualitative research: a guide for researchers in education and the social sciences, Teachers College Press, New York.

Serequeberhan, T 1987, ‘Heidegger and Gadamer: thinking as ‘meditative’ and as “effective-historical consciousness”’, Man and World, vol. 20, pp. 41- 64.

Shaw, JJ 2008, Emmanuel Levinas on the priority of ethics: putting ethics first, Cambria Press Amherst, New York. 218

Silburn, SR, Zubrick, SR, Lawrence, DM, Mitrou, FG, De Maio, JA, Blair, E, Cox, A, Dalby, RB, Griffin, JA, Pearson, G & Hayward, C 2007, ‘The intergenerational effects of forced separation on the social and emotional wellbeing of Aboriginal children and young people’, Family Matters, vol. 75. Australian Institute of Family Studies. Available from: http://www.aifs.gov.au/institute/pubs/fm2006/fm75/ss.pdf [10 May 2013]

Smith, K, Flicker, L, Lautenschlager, NT, Almeida, OP, Atkinson, D, Dwyer, A & LoGiudice, D 2008, ‘High prevalence of dementia and cognitive impairment in Indigenous Australia’, Neurology , vol. 71, no. 19, pp. 1470-1473.

Smith, K, Flicker, L, Shadforth, G, Carroll, E, Ralph, N, Atkinson, D, Lindeman, M, Schaper, F, Lautenschlager, NT & LoGiudice D 2011, ‘Gotta be sit down and worked out together: views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians’, Rural and Remote Health, vol. 11, p. 1650. Available from: http://www.rrh.org.au

Smith, LH 1999, Decolonizing methodologies: research and indigenous peoples, University of Otago Press, Dunedin New Zealand.

Struthers, R & Peden-McAlpine, C 2005, ‘Phenomenological research among Canadian and United States Indigenous populations: oral tradition and quintessence of time’, Qualitative Health Research, vol. 15, no. 9, pp. 1264-1276.

Svenaeus, F 2000, The Hermeneutics of medicine and the phenomenology of Health. Kluwer Academic Publishers, Dordrecht.

Svenaeus, F 2006, ‘Medicine’ in A companion to phenomenology and existentialism, eds HL Dreyfus & MA Wrathall, Blackwell Publishing Ltd, Oxford, pp. 412-424.

Svenaeus, F 2011, ‘Illness as unhomelike being-in-the-world: Heidegger and the phenomenology of medicine’, Medicine, Health Care and Philosophy, vol. 14, no. 3, pp. 333-343.

219

Svenaeus, F 2013, ‘The relevance of Heidegger’s philosophy of technology for biomedical ethics’, Theoretical Medicine and Bioethics, vol. 34, no. 1, pp. 1-15.

Swain, T 1993, A place for strangers: towards a history of Australian Aboriginal being, Cambridge University Press, Cambridge.

Taylor, C 1995, Philosophical arguments, Harvard University Press, Cambridge MA, London.

Taylor, J & Biddle, N 2008, ‘Locations of Indigenous population change: what can we say?’ Centre for Aboriginal Economic Policy Research (CAEPR) Working paper No. 43/2008 Australian National University Canberra.

Theunissen, M 1984, The other: studies in the social ontology of Husserl, Heidegger, Sartre, and Buber. The MIT Press, Cambridge MA, London England.

Thomas, D 2004, Reading doctors' writing: race, politics and power in Indigenous health research, 1870-1969 [online], Aboriginal Studies Press, Acton ACT. Available from: http://search.informit.com.au/documentSummary;dn=30423856191705 5;res=IELHEA ISBN: 0855754583 [17 Aug 2014].

Thompson, MG 2005, ‘Phenomenology of intersubjectivity: a historical overview of the concept and its clinical implications’ in Relational and intersubjective perspectives in psychoanalysis: a critique, ed. J Mills, Rowman & Littlefield, Northvale NJ, pp. 1-36.

Todres, L & Galvin, K 2006, ‘Caring for a partner with Alzheimer’s: intimacy, loss and the life that is possible’, QHW: International Journal of Qualitative Studies on Health and Well-Being, vol. 1, pp. 50-56.

Todres, L & Wheeler, S 2001, ‘The complementarity of phenomenology, hermeneutics and existentialism as a philosophical perspective for nursing research’, International Journal of Nursing Studies, vol. 38, no. 1, pp. 1-8.

220

Todres, L 2007, Embodied enquiry: phenomenological touchstones for research, psychotherapy and spirituality, Palgrave Macmillan, Hampshire, New York.

Todres, L, Galvin, K & Dahlberg, K 2007, ‘Lifeworld-led healthcare: revisiting a humanising philosophy that integrates emerging trends’, Medicine, Health Care and Philosophy, vol. 10, pp. 53-63.

Tomasseilli, KG 2007, Writing in the san/d: Autoethnography among Indigenous Southern Africans, AltaMira Press, UK.

Tomkins, L & Eatough, V 2013, ‘Meanings and manifestations of care: a celebration of hermeneutic multiplicity in Heidegger’, The Humanistic Psychologist, vol. 41, no. 1, pp. 4-24.

Valdes, MJ (ed.) 1991, A Ricoeur reader: reflection and imagination, University of Toronto Press, Toronto, Buffalo.

Van Manen, M. 1990. Researching lived experience. The State University of New York Press, Albany NY.

Varela, FJ & Shear, J 1999, ‘First-person methodologies: what, why, how?’, Journal of Consciousness Studies, vol. 6, no. 2-3, pp. 1-14.

Venkatesan, P 2008, ‘The legitimation of local knowledges: introducing the post-modern into laboratory science’, Social Semiotics, vol. 18, no. 4, pp. 481-491.

Verran, H & Christie, M 2011, ‘Doing difference together: towards a dialogue with Aboriginal knowledge authorities through an Australian comparative empirical philosophical inquiry’, Culture and Dialogue, vol. 1, no. 2, pp. 21-36.

Vidal, F 2009, ‘Brainhood, anthropological figure of modernity’, History of the Human Sciences, vol. 22, no. 1, pp 5-36.

Waldram, JB 2006, ‘The view from the Hogan: cultural epidemiology and the return to ethnography’, Transcultural Psychiatry, vol. 43, no. 1, pp. 72- 85.

Walker, W 2007, ‘Ethical considerations in phenomenological research’, Nurse Researcher; vol. 14, no. 3, p. 36. 221

Walsh, K 1999, ‘Shared humanity and the psychiatric nurse-patient encounter’, Australian and New Zealand Journal of Mental Health Nursing, vol. 8, pp. 2-8.

Walsh, R 2003, ‘The methods of reflexivity’, The Humanist Psychologist, vol. 31, no. 4, pp. 51-66.

Walter, M 2010, ‘The politics of the data: how the Australian statistical indigene is constructed’, International Journal of Critical Indigenous Studies, vol. 3, no. 2.

Waymack, MH 2009, ‘Yearning for certainty and the critique of medicine as “science”’, Theoretical Medicine and Bioethics, vol. 30, pp. 215-229.

Whitehouse, PJ, Gaines, AD, Lindstrom, H & Graham, JE 2005, ‘Anthropological contributions to the understanding of age-related cognitive impairment’, The Lancet Neurology, vol. 4, no. 5, pp. 320-326.

Widdershoven, GAM & Berghmans, RLP 2006, ‘Meaning-making in dementia: a hermeneutic perspective’, in Dementia: mind, meaning, and the person, eds J Hughes, S Sabat & S Louw, Oxford University Press, Oxford, New York, pp. 179-191.

Wrathall, MA & Malpas, J eds 2000, Heidegger, coping, and cognitive science: Essays in Honor of Hubert L. Dreyfus, Vol. 2, The MIT Press, Cambridge MA.

Wright, A 2006, Carpentaria, Giramondo Publishing, Artarmon NSW.

Zahavi, D 2001, ‘Beyond empathy phenomenological approaches to intersubjectivity’, Journal of Consciousness Studies, vol. 8, nos 5-7, pp. 151-167.

Zann, S 1994, Identification of support, education and training needs of rural/remote health care service providers involved in dementia care, Rural Health, Support, Education and Training RHSET Northern Regional Health Authority, Vincent, Queensland.

Zubrick, S, Lawrence, D, Silburn, S, Blair, E, Milroy, H, Wilkes, T, Eades, S, D’Antoine, H, Read, A, Ishiguchi, P & Doyle, S 2004, The Western Australian Aboriginal child health survey: the health of Aboriginal 222

children and young people, Telethon Institute for Child Health Research, Perth.

Zur, SS 2007, ‘Letting go of data in Aboriginal Australia: ethnography on “rubber time”’, The Qualitative Report, vol. 12, no. 4, pp. 583-593.

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APPENDICES

Appendix 1: Information statement and consent form

Approval No HREC 08003

THE UNIVERSITY OF NEW SOUTH WALES AND PRINCE OF WALES MEDICAL RESEARCH INSTITUTE

PARTICIPANT INFORMATION STATEMENT AND CONSENT FORM

The Koori Growing Old Well Study:

Experience and Meaning of Cognitive (Memory & Thinking) Problems and Dementia

Sub-Study

What is this study about?

We invite you to take part in a study about the experience of caring for a person who has a memory, thinking or other cognitive problem including dementia, and the significance of this experience in Aboriginal families and communities. We plan to speak to between 10 and 20 people from Aboriginal communities who live in New South Wales and are caring or responsible for an Aboriginal person with a memory, thinking or other cognitive problem like dementia. Through a ‘conversation style’ of interview we will listen to and hear about the experiences, needs and concerns of people like yourself, who are caring for or concerned about someone with these types of problems. This may be one person that we talk with, or a few involved family members, depending on each family’s circumstances.

In this research, we hope to learn about the day to day realities of caring for an older Indigenous person with cognitive memory and thinking problems, which may include a dementia, and how this is experienced by family members. We are also interested in learning about peoples’ experiences with services and what types of care people wish to receive. We believe that peoples’ own experience and knowledge about what it is like to care for someone with these types of problems is important, and can add to all our understanding about the types of information, services and support that are needed in Aboriginal communities. We also think it is important to learn more about the different ways people talk about and understand memory and thinking problems in older age,

224 and about ‘dementia’, and how this might help us plan programs that are meaningful to people in the community. Why have you been invited to participate?

You were selected as a possible participant in this study because you live in New South Wales and are Aboriginal or are looking after, or responsible for, an older Aboriginal person who has a memory, thinking or other cognitive problem, such as a dementia.

If you agree to take part in this research, we will talk about your experiences taking care of the family member you are concerned about. We are interested in your experience and understanding, the words and phrases you and others in your family and community use to talk about problems of memory, thinking or ‘dementia’, your experiences with services and programs, and, what you believe are the right ways for you, your family and your community to be caring for an older person with memory, thinking or other cognitive problems, including a dementia.

Who is the researcher who will be conducting this research?

The research will be carried out by Rachelle Arkles as part of her doctoral degree in Public Health at the University of New South Wales and as a member of the Koori Growing Old Well Study team. Rachelle has worked for many years with the Muru Marri Indigenous Health Unit in the School of Public Health and Community Medicine at the University of New South Wales as well as with the Prince of Wales Medical Research Institute. Through the Koori Growing Old Well Study, Rachelle is establishing relationships with individuals and organisations in the study sites. Rachelle will be involved in the contact interviews for the primary study and will continue to work closely with the Aboriginal researchers on the Koori Growing Old Well Study team.

How are we going to do our research?

This study will involve a series of ‘conversation style’ interviews with between 10 and 20 family members or nominated carers of Indigenous people with a memory, thinking or other cognitive problem like dementia, where people can talk freely about their experiences. Each interview conversation should take approximately one and a half hours. We would also like to speak to people a few times over the year, say 2 or 3 times, so we can talk about any ongoing issues that are of concern to you. This will also enable us to check that you are happy with the information you have given to us and that our understanding of your situation is correct. These interviews will take place where you feel most comfortable, whether in your own home or at your local community or health centre.

What might be positive benefits for you and your community?

Your participation in this study is voluntary. There are no risks to your health or wellbeing from taking part in this research and there are no tests involved. You will not 225 gain any direct (material or financial) benefits from taking part in this study. You may find it helpful to have an opportunity to express your experiences and concerns as well as your ideas as to what aspects of caring for older people with memory and thinking problems works well. The community may also benefit from knowledge that comes from understanding more about the needs of people who are caring for an older person with these types of problems and about what kinds of programs and services are needed in the community.

What is the ethics process for this research?

This research will be conducted according to the guidelines developed by the Aboriginal Health and Medical Research Council Ethics Committee and the University of New South Wales’ Human Research Ethics Committee. Rachelle’s work will also be guided by the Indigenous reference groups in the local study sites where the research takes place.

All personal information you give us will remain completely confidential and will only be disclosed, if appropriate, with your permission. Any information you give us will not identify you or any family members, including the person you are concerned about.

How will the information from the study be used?

Rachelle Arkles and her study supervisors will be the only people with access to the study information and this will be used only by this researcher to write up the thesis. Any publications or presentations arising from this research, including the thesis, will only be written up or used in a manner that does not identify any individuals, family members or the person who is being cared for.

What do you need to know about consent to take part in this study?

If you consent to take part in this research, we will interview you about your experiences caring for someone who has a memory and thinking problem or who has or might have a dementia and how this experience is for you and those around you. The interviews will take about one and a half hours and we hope to speak with you two or three times over the year. All information you talk about will remain completely confidential and will only be disclosed with your permission. By signing this consent form, you also agree to let us present and to publish the findings at public conferences, in community reports, and in health and medical journals. In any of these, no information will be presented that might identify you, the person you care for, or your family members.

Your decision whether or not to take part will have no effect on your future health care or your relations with the University of New South Wales and the Prince of Wales Medical Research Institute. If you decide to take part, you are free to withdraw your consent and to stop participation at any time.

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Any complaints you might have can be directed to the Ethics Secretariat, The University of New South Wales, SYDNEY 2052 AUSTRALIA (phone (02) 9385 4234, fax (02) 9385 6648, email [email protected]). Any complaint you make will be investigated promptly and you will be told about the outcome.

If you have any questions about any part of the research, please feel free to ask us. If you have any additional questions later, please contact Professor Tony Broe on 0414 192 000 or Professor Lisa Jackson Pulver on 0404 859 989. You will be given a copy of this form to keep.

The Koori Growing Old Well Study:

Experience and Meaning of Cognitive (Memory & Thinking) Problems and Dementia

Sub-Study

I, ……………………………………………………… consent to take part in The Koori Growing Old Well Study: Experience and Meaning of Cognitive (Memory & Thinking) Problems and Dementia Sub-Study. I have read or been made aware of the information provided on the above study and have decided to take part.

By taking part in this research, I agree to an interview that could last up to one and a half hours. I understand that I will be asked about my experience of caring for someone with a cognitive memory and thinking problem or a dementia. I understand that there are no tests involved. I understand that I can freely withdraw from the research at any time.

…………………………………. ………………………. Signature of Research Participant Signature of Witness

…………………………………. ………………………. (Please PRINT name) (Please PRINT name)

………………………………… ………………………. Date Nature of Witness

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WITHDRAWAL OF CONSENT

The Koori Growing Old Well Study:

Experience and Meaning of Cognitive (Memory & Thinking) Problems and Dementia

Sub-Study

I wish to WITHDRAW my consent to participate in the research described above and understand that my withdrawal WILL NOT affect any treatment or my relationship with The University of New South Wales or the Prince of Wales Medical Research Institute.

You do not need a witness signature for this form. Just print your name, sign and date it and post or fax it to:

Professor GA (Tony) Broe Prince of Wales Medical Research Institute Barker Street Randwick NSW 2031

If you would like to speak to someone personally about withdrawing, please telephone Holly Mack, Study Manager, Koori Growing Old Well Study, at the Prince of Wales Medical Research Institute on Ph: (02) 9399 1000.

…………………………….. ………………… Signature Date

……………………………. Please PRINT Name

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Appendix 2: Interview guide

Theme 1: Identifying the Situation Can we begin by talking about what you are most concerned about now in relation to your [Elder]? What’s the situation at the moment?  Elaboration: Can you describe what it is you ‘see’ and ‘hear’ and notice with your (Elder) at the moment ie in relation to the situation at the moment? [prompts] Things that they say & do  Would you say that other members of your family are observing and experiencing similar things to you with [Elder]? [If not, what are your thoughts about how they might be experiencing / thinking about (Elders) behaviour?  Have you heard and read much about this situation you are experiencing with [Elder]? Ie. Changes in older peoples’ behaviour, memory and thinking as they get older? … [prompts] Maybe what the doctor/clinic/friends/newspapers says?

Theme 2: The Appearance of ‘Dementia’: how it comes into view Can you take me back to the time when you first starting noticing something might not be right with [Elder]? What happened?  Is there a specific situation or a story that suggested to you that something was not right? What was this experience like for you? (Note: Bodily sensations; Phrases/images/metaphors) Were you the only one who noticed/or felt something might not be right at that time? What happened next? Is this what is happening now? What is happening now?

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Theme 3: The Concrete Domain of Care-giving We’ve been talking about what has been happening for you and your [Elder], can you help me understand more about what is actually involved – on a day to day basis - in taking care of your [Elder]? Ie. what kind of help is needed?  Let’s start with the care YOU provide (daily/weekly etc)  The care OTHER People in the FAMILY provide  The care FRIENDS or NEIGHBOURS provide (daily/weekly etc)  The care ORGANISATIONS & SERVICES Provide (which Organisations and Services? community based; Indigenous specific; mainstream etc; daily/weekly)  How much time do you spend (roughly) caring for your [Elder]? (How did you come to be the one taking care of … ) Do you feel supported [by family/community/organizations] in providing care to your [Elder]? How does your [Elder] spend each day?

Theme 4: Experiencing Care-giving Can you tell me about a time or times when you and your [Elder] enjoy yourselves together? What makes it so enjoyable? Can you tell me about a time or times when you felt you weren’t coping so well providing care? What happened then? What were the difficulties/challenges you experienced? Are these the same kind of challenges you face now in providing care to your [Elder?] Have you had to make any big decisions concerning your [Elder]? How was this for you? Would it be OK to hear about what you had to go through to make this decision?

Theme 5: Visioning the ‘Care’ of the Elder You’ve described to me so well how things ARE, Now, I’d like us to think through how you would like it to be? For your [Elder] and for yourself?  What do you think of when you think about providing perhaps the ‘ideal’ or ‘right’ kind of care for [Elder]

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 Is there a place that comes to mind when you think about the best place for your [Elder]?  Do you think it is possible to achieve the kind of care you think is needed for your [Elder]? (If Yes) : Can we talk a bit about what is involved for this to happen and what do you think it would take for you to participate in making this happen? (If NO or NOT SURE): Can we talk a bit about what you think it is about the situation that stops this from happening? Also, what would be ideal in terms of the support/or services you would need to provide the ‘ideal’ support for your [Elder]?

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Appendix 3: Questionnaire guide for yarn-up group discussion

Q: In your experience have you come across much memory loss, or thinking problems, or ‘dementia’ in your community?

Q: What seems to happen when older people in the community with ‘dementia’, memory loss or confusion need looking after?

Q. Are there any specific words or phrases people use to describe these kinds of problems in your community?

Q: What do you think is needed for families in this community to make it possible to care well for their older relatives, the way they want to?

Q: Is there anything else you can share with us that might help us understand more about how people in this community experience ‘dementia’, memory loss and confusion for the older members?

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Appendix 4: Brochure for yarn-up at La Perouse

IS FORGETFULNESS AFFECTING YOU OR ANY OF YOUR FRIENDS OR FAMILY? COME YARN UP AT THE WORKSHOP AT LA PEROUSE HEALTH CENTRE LUNCH PROVIDED 18TH NOVEMBER 2011 10:30AM TO 1PM Presented by Dr Simon Chalkley and Matilda Freeman Dementia CNC

CONTACT BEVERLEY DAVISON OR WENDY SUE HARRISON 83474800 OR MIKI GRIFFITH 93828008

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Appendix 5: Brochure for KGOWS yarn-up

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