Adults with intellectual and their : Voices to be heard by communities and the disability services sector in Victoria, Australia

by

Rev (Deacon) Andrew (Andy) Stuart Calder BBSc, GradDip Recreation Planning, BTheol, MA (Research)

A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy

University of Divinity

2019

Exodus: Painting by a young man with intellectual E. Kellenberger in Journal of Disability and (2013)

“I think a few of these organisations can do more to advocate in this area, to make sure that people with a disability get that side of that particular aspect gets looked after a bit more (sic) … because at the moment there is

very little … and it could be a lot better.” (Bill)

ii Abstract

Adults with and their spirituality: Voices to be heard by faith communities and the disability services sector in Victoria, Australia

This practical social action research, the first to focus on this issue in Australia, sought the opinions and explored the experience of adults with intellectual disability. Historically their perspectives and aspirations have been subject to the interpretations and actions of others; this includes the phenomenon of spirituality. What do they say is important?

The researcher, a minister in the Uniting Church in Australia, is an advocate who works within faith communities and fosters links with the disability service sector, seeking the recognition of spirituality as important in people’s lives. James and Evelyn Whitehead’s theological model and method, supplemented with social analysis, praxis, provide the overarching framework for the research, and for subsequent discussions of experience, culture and Christian response.

Using interpretive hermeneutical phenomenology (IHP) and participatory action research (PAR), the researcher collaborated with the Victorian Advocacy League for Individuals with Disability (VALID Inc.). This major government-funded self-advocacy group recruited 14 people for interviews and established, as an additional layer of research, an expert group to reflect on and react to the findings.

Analysis of the interviews revealed two superordinate themes that expressed the spirituality of respondents through the desire for: (i) further friendship connections with others, and (ii) further friendship connections with . In response to this research and interim findings, VALID’s expert group determined that VALID needed to develop a new policy Statement that embraced the importance of spirituality for ongoing advocacy to both government and faith communities. This led in turn to a similar Statement being developed by the Faith Communities Council of Victoria (FCCV Inc.) seeking greater recognition and representation of people with disabilities.

The discussion of required actions is two-fold:

iii Firstly, using Walter Brueggemann’s functional qualifiers, a prophetic theology and response of friendship by faith communities is developed. This call elaborates a response to God’s gift of friendship.

Secondly, the two Statements provide evidence and impetus for ongoing advocacy to faith communities, and potential influence of policy within Australia’s new National Disability Insurance Scheme. Acknowledgements

To my family – your enduring love and support for the past 35 years means the world to me; especially Ben and Anna, and Julie for your encouragement in myriad ways: in my passion for this call, sustaining meals, walks and holiday breaks to name a few…

To my parents Stuart and Winty who fostered a curiosity to understand the world in depth and detail.

This research is dedicated to the 14 people who generously offered personal stories and insights. May their contribution be a legacy for the recognition of spirituality in the lives of people with intellectual disabilities. Thanks also to Jordan Dymke for the pilot interview.

Thanks to VALID Inc: to the Expert Group which validated the findings and endorsed the ‘Statement of Spirituality’, to Chief Executive Officer Kevin Stone and staff who were involved.

I could not have asked for a finer principal supervisor than Dr Alan Niven. As an esteemed pastoral and practical theologian Alan has stayed the long journey since 2012 providing his extensive knowledge of scholarship in these fields, invaluable assistance with organisation and structure of the thesis, flexibility of meeting times and careful attention to detail in the final stages of assembling the materials. Alan’s cheerful disposition always made our times together pleasurable, notwithstanding his critique of my propensity to overuse colons! I will forever be indebted to you Alan.

As my Associate Supervisor, Prof Emeritus Trevor Parmenter’s knowledge and scholarship in the field of intellectual disability has been invaluable. Trevor’s early emphasis on establishing appropriate methodology was formative and his editing and encouragement throughout have been so appreciated.

I want to acknowledge my friend and colleague Rev. Bill Gaventa. In 1994 I had the privilege of being supervised by Bill in a Clinical Pastoral Education program, with my placement settings being the Hunterdon Developmental Centre and Somerset Medical Centre, both in New Jersey, USA. Bill inspired my subsequent vocation and it has been a pleasure to invite him to Australia on two occasions as keynote presenter at

v ‘Exclusion and Embrace’ conferences. Bill is a faculty member for the annual ‘Summer Institutes of Theology and Disability’ held in the northern hemisphere. At the 2013 Toronto, Canada and 2017 Los Angeles, USA Institutes respectively, I had the good fortune to present this research.

Thanks to friends and colleagues in the disability and spirituality movements (both Australian and international) who have inspired, encouraged and challenged me.

Thanks to the University of Divinity for the opportunity to complete the Ph.D. as a candidate within the federal government’s Research Training Scheme (RTS).

The University also provided a grant enabling me to present the research at the European Society for the Study of Theology and Disability (ESSTD) at Lille, France in 2013.

Thanks to the Uniting Church Synod of Victoria and Tasmania for enabling me to combine this research with my employment as Disability Inclusion Advocate. People who supported this arrangement through to the end included Rev David Pargeter, Cheryl Lawrie, Adrian Pyle, Rev Dr Jenny Byrnes and Rev Nigel Hanscamp.

Study Grants from the Synod’s Centre for Theology and Ministry enabled occasional time-release from employment duties to focus on the research.

Thanks to colleagues associated with Pilgrim Theological College for encouragement and support including regular Thesis Camps with guidance and sustenance provided by Dr Fotini Toso.

Thanks to staff at Dalton McCaughey Library, Parkville and Baillieu Library, The University of Melbourne, Parkville.

Thanks to Monique Lisbon of Mono Unlimited: Computer & Printing Support, for formatting of the thesis.

Thanks for the support of my community of faith at Brunswick Uniting Church, and the sustaining of Rev Ian Ferguson, Beth Shelton, Rev Alistair Macrae and Clare Boyd-Macrae. Thanks to supervisory colleagues and friends in the world of Clinical Pastoral Education (CPE) who have consistently encouraged me and enquired about my well- being!

Thanks for the wisdom and discernment of members of the Reflective Practice Group with whom I met regularly.

Thanks to staff at the Office for the Public Advocate (OPA) for advice both legal and legislative: The Public Advocate Colleen Pearce, Dr John Chesterman, and Phil Grano.

Thanks to fellow scholars who have provided insights, advice and encouragement at different times: Dr Jan Morgan, Dr John Rogers, Dr Bill Calder, Dr Tim Budge.

Thanks to the Mitchell mobsters for your friendship and encouragement: Sally Polmear, Brian Walters, Jill Humann, Doug Humann, Rev Alistair Macrae and Clare Boyd-Macrae.

Thanks to my Men’s Group who have provided numerous outlets to not take myself too seriously: Rev Gordon Bannon, Rev Daryl Colless, Peter Meihuizen, Jonathon Pietsch and Rev Ray Ollerton (dec).

Thanks to Peter Harding who patiently and skilfully enabled production and insertion of tables and figures.

Thanks to Shelle Knoll - Miller for her image ‘Uncomfortable Bed-fellows’.

vii Declarations

1. I declare that the word length of this thesis is 109,292 words. This does not exceed the maximum length specified in the regulations. In each case the word length includes footnotes, tables, appendices and illustrations, but excludes bibliography.

2. I declare that the referencing format is consistent, and conforms to the requirements of the latest Turabian Style.

3. I hereby certify that this thesis contains no material which has been accepted for the award of any other degree or diploma in any university or other institution, and affirm that to the best of my knowledge, the thesis contains no material previously published or written by another person, except where due reference is made in the text of the thesis.

Signed:

Andrew (Andy) Stuart Calder

25 February 2019

Table of Contents

Abstract ...... iii

Acknowledgements ...... v

Declarations ...... viii

Table of Contents...... ix

List of Tables and Figures ...... xvii

Introduction: Research Questions and Process ...... 1

Chapter 1: Setting the Scene ...... 7 1.1 Problem and purpose ...... 7 1.1.1 Historical global context ...... 7 1.1.2 Post-medieval period...... 8 1.1.3 Late twentieth century responses ...... 11 1.2 Disability rights movement ...... 12 1.3 : Overview ...... 14 1.3.1 Influence and theoretical foundations ...... 14 1.3.2 Influence on disability theology ...... 17 1.4 Research context: Australia and Victoria ...... 18 1.4.1 Legislation: International, Australian and Victorian ...... 21 1.4.2 Social inclusion – Victoria ...... 22 1.4.3 Spiritual care and health – Victoria ...... 24 1.5 Quality of Life (QOL) ...... 28 1.5.1 Quality of Life indices and spirituality ...... 28 1.5.2 QOL, loneliness and friendship ...... 31 1.6 Researcher’s background and influences ...... 36 1.6.1 Diaconate and Clinical Pastoral Education ...... 36 1.6.2 Role of bridge-builder ...... 38 1.7 Theological influences on the research ...... 41 1.7.1 Friendship and ...... 41 1.7.2 Exile: Brueggemann’s ‘Prophetic Imagination’ schema ...... 42 1.8 Conclusion ...... 43

Chapter 2: Spirituality and Disability ...... 45 2.1 Introduction ...... 45

ix 2.2 Spirituality: Working definitions and understandings...... 45 2.2.1 A provisional understanding ...... 45 2.2.2 Relationship between spirituality and religion ...... 47 2.3 Spirituality and disability ...... 50 2.3.1 Core dimensions of understanding ...... 50 2.3.2 A foundational dialogue ...... 51 2.3.3 Historical overview of disability and spirituality literature ...... 54 2.3.4 Images in disability and spirituality literature ...... 57 2.3.5 Creamer’s 3-fold disability and spirituality images ...... 58 2.3.5.1 The Accessible God ...... 58 2.3.5.2 The Interdependent God ...... 59 2.3.5.3 The Disabled God ...... 60 2.3.6 Swinton’s 5-fold images and process of interpretation ...... 60 2.4 Spirituality and intellectual disability ...... 63 2.4.1 Introduction ...... 63 2.4.2 Swinton’s review of literature 1990-2000 ...... 64 (i) Education, consciousness raising and enabling ...... 65 (ii) Spiritual care and social justice ...... 66 (iii) Meaning and the interpretation of experience ...... 68 (iv) Religious communities and support ...... 73 (v) Transforming stories ...... 75 2.5 Exodus: Painting by a young man with intellectual disability ...... 77 2.6 Conclusion ...... 78

Chapter 3: Spirituality and Friendship ...... 80 3.1 Introduction ...... 80 3.2 Definitions and characteristics of friendship...... 80 3.2.1 Definitions of friendship ...... 80 3.2.2 Characteristics of friendship ...... 81 3.3 Historical foundations of friendship ...... 84 3.3.1 Classical understandings of friendship ...... 84 3.3.2 Friendship perspectives since medieval times ...... 85 3.4 Insights from scripture: Towards a biblical understanding...... 88 3.4.1 Backdrop: Aristotle – difficulties of agathon (goodness) ...... 88 3.4.2 New Testament references to Jesus and friendship ...... 89 3.4.3 Gift and call – biblical foundations ...... 91 3.4.3.1 Created in God’s image for relationship ...... 91 3.4.3.2 God’s acceptance of us in friendship ...... 92 3.4.3.3 Loving others as God loves us ...... 92 3.4.3.4 The gift of hospitality ...... 93 3.4.3.5 Friendship as covenant ...... 93 3.5 Spirituality, friendship and intellectual disability ...... 94 3.5.1 Key issues and proponents ...... 94 3.5.2 What do people with intellectual disability say about friendship? 98 3.6 Research projects investigating spirituality of people with intellectual disability ...... 100 3.6.1 Learning Disabilities Foundation (UK) research projects...... 100 (i) What is important in your life? ...... 101 (ii) Do you think that there is a God or a higher power? ...... 102 (iii) What does God do for you? ...... 102 3.6.2 ‘Space to Listen’ prompted two projects ...... 103 3.6.3 ‘Everybody has a Story’ ...... 106 3.6.4 ‘The spiritual lives of people with profound and complex learning disabilities’ ...... 107 3.6.5 ‘To belong I need to be missed’ ...... 109 (i) Understandings, perceptions and experiences of inclusion ...... 110 (ii) Obstacles and suggested strategies to increase participation ...... 110 (iii) People’s interpretations of their disability and the particular teachings/beliefs of that religion/faith community ...... 110 (iv) Role of leadership as a catalyst to promote positive change ...... 111 3.7 Conclusion ...... 112

Chapter 4: Research Framework – Practical Theology ...... 114 4.1 Introduction ...... 114 4.2 Practical theology ...... 115 4.2.1 Principles and purposes of practical theology ...... 115 4.2.2 Interaction of text and understanding ...... 117 4.2.3 Theological reflection – understandings and purpose ...... 118 4.2.4 Application of hermeneutics to practical theology ...... 119 4.3 Expressions of practical theology that influence this research...... 121

xi 4.3.1 Clinical Pastoral Education (CPE) ...... 121 4.3.2 Liberation Theology ...... 123 4.3.3 Background and development of praxis ...... 125 4.4 Selected models and methods for this research ...... 127 4.4.1 Nature and purpose of theological reflection models and methods ...... 127 4.4.2 Whitehead and Whitehead Model ...... 129 4.4.2.1 Christian tradition ...... 129 4.4.2.2 Experience of faith communities and practitioner ...... 129 4.4.2.3 Resources of the culture ...... 130 4.4.3 Whitehead and Whitehead Method ...... 131 4.4.3.1 Attending ...... 131 4.4.3.2 Assertion ...... 131 4.4.3.3 Action ...... 132 4.4.4 Holland and Henriots’ ‘Pastoral Circle’ ...... 132 4.5 Praxis and its application ...... 134 4.5.1 Application of social analysis ...... 135 4.6 Practical theology and action research ...... 137 4.6.1 Process of action research ...... 137 4.6.2 Principles of action research ...... 138 4.6.3 Application of practical theology and action research...... 140 4.7 Conclusion ...... 141

Chapter 5: Researching Lived Experience ...... 142 5.1 Introduction ...... 142 5.2 Van Manen’s lived experience – human science research ...... 143 5.2.1 Schema for researching lived experience ...... 144 5.3 Carter and Little’s model for qualitative research...... 146 5.3.1 An epistemological position ...... 147 5.4 Choosing a methodology ...... 148 5.4.1 Phenomenology and its tradition ...... 149 5.4.1.1 Husserl’s descriptive phenomenology...... 149 5.4.1.2 Heidegger’s interpretive phenomenology...... 150 5.4.1.3 Interpretive hermeneutic phenomenology (IHP) ...... 151 5.4.2 Participatory action research (PAR) tradition ...... 153 5.4.2.1 Background and purpose ...... 153 5.4.2.2 Three contributions of PAR to social science research ..... 154 5.5.1 Relationship between researcher and the participant...... 156 5.5.2 The way that quality of methods are demonstrated ...... 157 5.5.3 Form, voice and representation in the method ...... 158 5.6 Methods chosen for the research ...... 159 5.6.1 Phenomenological interviewing method ...... 160 5.6.2 Focus group method ...... 161 5.6.3 Participatory action research method ...... 162 5.7 Method used to analyse interviewees’ responses (IPA) ...... 162 5.8 Action research and people with intellectual disability ...... 166 5.9 Hospitality, conversion and critical faithfulness...... 168 5.10 Conclusion ...... 170

Chapter 6: Research Design and Implementation ...... 171 6.1 Introduction ...... 171 6.2 Process of engagement with VALID ...... 171 6.3 Self-Advocacy network and Expert Group ...... 173 6.4 Contextualising the research: pre-recruitment processes ...... 174 6.5 Human Research and Ethics Committee (HREC) ...... 175 6.6 Recruitment process ...... 176 6.7 Interviewing processes ...... 178 6.7.1 Pilot Interview ...... 182 6.8 Transcription of the 14 interviews ...... 183 6.9 Post-transcription feedback/‘Statement of Spirituality’ ...... 183 6.10 Research validity ...... 185 (i) Credibility ...... 185 (ii) Auditability ...... 187 (iii) Fittingness ...... 189 6.11 Ethical considerations – adults with intellectual disability ...... 189 6.12 Two critical readership issues...... 192 6.13 Conclusion ...... 193

Chapter 7: What did the people say? Emergent research themes ...... 195 7.1 Introduction ...... 195 7.2 Preliminary immersion in the data – two actions ...... 195 7.2.1 First action: Butcher’s paper approach ...... 195

xiii 7.2.2 Second action: Tabulation of time ...... 196 7.3 Theme development ...... 198 7.4 What did the interviewees say? ...... 203 7.4.1 Development of themes from each question ...... 203 7.4.1.1 When I say the word spirituality, what do you think of, what comes to mind? ...... 203 7.4.1.2 What makes you feel good about yourself? (value) ...... 206 7.4.1.3 What do you like best about your life? (meaning) ...... 208 7.4.1.4 Are friends important to you and why? (relationships) ...... 209 7.4.1.5 What do you want to do with your life? (hope) ...... 212 7.4.1.6 Do you think there is a God? (transcendence) ...... 214 7.4.1.7 Why do you think you are in the world? (existentialism) ... 217 7.4.1.8 Do you like being in nature? ...... 220 7.4.1.9 As we are nearly finished, is there anything else you would like to say about your spirituality? ...... 221 7.4.1.10 Are there any changes or actions which would make your life better?...... 223 7.4.2 Superordinate themes and discussion ...... 224 7.5 Conclusion: where have we been and where are we going? ...... 226

Chapter 8: Analysis of Emerging Themes ...... 228 8.1 Introduction ...... 228 8.2 Important elements of this constructed text – analysis and praxis ...... 229 8.3 Issues raised by the interviewees as important ...... 230 8.3.1 When I say the word spirituality, what do you think of, what comes to mind? ...... 231 8.3.2 What makes you feel good about yourself? ...... 231 8.3.3 What do you like best about your life?...... 232 8.3.4 Are friends important to you and why? ...... 232 8.3.5 What do you want to do with your life? ...... 233 8.3.6 Do you think there is a God? ...... 233 8.3.7 Why do you think you are in the world? ...... 234 8.3.8 Do you like being in nature? ...... 234 8.4 Superordinate themes: spirituality defined by relationships and connectedness ...... 237 8.5 Connectedness, friendship and faith communities ...... 240 8.6 Contextual discussion of philos, eros and agape...... 243 8.7 On what basis might Faith Communities respond? ...... 246 8.8 Towards the future: Brueggemann’s new orientation ...... 247

Chapter 9: Implications for Practice: Faith communities – The Embrace of Friendship ...... 249 9.1 Introduction ...... 249 9.2 Brueggemann’s theological schema – Prophetic Imagination ...... 250 9.3 Jesus as friend ...... 253 9.4 CRITICAL issues ...... 256 9.4.1 Body image ...... 256 9.4.2 Cult of normalcy and otherness ...... 258 9.4.3 Healing and wholeness ...... 260 9.4.4 Independence and vulnerability ...... 262 9.4.5 Fear of the stranger – xenophobia ...... 264 9.5 ENERGISING issues ...... 265 9.5.1 Trinitarian anthropology ...... 265 9.5.2 Interdependence and vulnerability...... 268 9.5.3 Servanthood and friendship ...... 270 9.5.4 Love of the stranger – filoxenia ...... 272 9.5.5 Embrace of friendship ...... 274 9.6 Conclusion ...... 276

Chapter 10: Implications for Practice: Spirituality in Disability Services ...... 278 10.1 Introduction ...... 278 10.2 Bridge-building between “in” and “of” worlds ...... 279 10.3 Disability rights/friendship and spirituality ...... 281 10.4 History of advocacy relevant to this research project ...... 287 10.4.1 State of Victoria: Disability action plans ...... 287 10.4.2 Spirituality and disability advocacy in Australia/New Zealand ... 288 10.4.3 Struggle for recognition of spirituality since 2001 ...... 289 10.5 Impact of this research project: fulcrum of 2016 ...... 291 10.5.1 Two Policy ‘Statements of Spirituality’ ...... 291 10.5.1.1 VALID’s ‘Statement of Spirituality’ ...... 291 10.5.1.2 Faith Communities’ Council of Victoria (FCCV Inc.) ‘Statement concerning people with Disability’ ...... 292 10.5.2 Influence of ‘Statements’ for advocacy since 2016...... 294 10.6 National Disability Insurance Scheme (NDIS) ...... 296

xv 10.7 Australian Research Council: Quality of Life research ...... 299 10.8 Relationship to practical theology/praxis ...... 301 10.9 Research limitations ...... 302 10.10 Recommendations ...... 304

Conclusion ...... 306

Bibliography ...... 308

Appendices ...... 337 Appendix 1: Having A Say Conference 2013 ...... 338 Appendix 2: Self-Advocacy Network ...... 345 Appendix 3: Network Presentations 2013...... 346 Appendix 4: VALID CEO Letter of Request ...... 353 Appendix 5: VALID CEO Permission ...... 355 Appendix 6: Participant Information Statement ...... 356 Appendix 7: Participant Information Statement – Easy English Version ...... 360 Appendix 8: Participant Consent Form – Easy English Version ...... 365 Appendix 9: Revocation of Consent – Easy English Version...... 367 Appendix 10: Sorry Letter ...... 368 Appendix 11: Newsletter Article for VALID Networks ...... 369 Appendix 12: VALID network meetings 2014 ...... 370 Appendix 13: Register of ‘Packs’ ...... 374 Appendix 14: VALID conference feedback 2015 and 2016 ...... 375 Appendix 15: Feedback 1 – Self-Advocacy ...... 383 Appendix 16: Validation 1 – Discussion of Primary Data ...... 392 Appendix 17: Feedback 2 – Self-Advocacy ...... 394 Appendix 18: Feedback 2 re Statement ...... 404 Appendix 19: Faith Communities Council of Victoria: Statement on People with Disability 2016 ...... 405 Appendix 20: VALID Statement on Spirituality ...... 406

List of Tables and Figures

Tables

Table 1: Characteristics of adult friendship (McVilly) ...... 83

Table 2: Aggregate of time spent per question ...... 197

Table 3: Percentage of time spent per question ...... 197

Table 4: Thematic Development in 3 stages ...... 202

Figures

Figure 1: Components of the Inquiry ...... 6

Figure 2: Exodus: Painting by a young man with intellectual disabilities ...... 77

Figure 3: Whitehead and Whitehead Model and Method ...... 131

Figure 4: Holland and Henriots’ ‘Pastoral Circle’ ...... 134

Figure 5: The ‘Uncomfortable bed-fellows’ – Shelley Knoll-Miller ...... 294

xvii

Introduction: Research Questions and Process

“Whoever is searching for the human being first must find the lantern.”1 Friedrich Nietzsche based this statement on the story of fourth century (BCE) Greek philosopher Diogenes who was reported as walking around during daylight with a lit lantern. He responded to curious questioners: “Even with a lamp in broad daylight I cannot find a real human being.” When people pointed to themselves he chased them with a stick, shouting “it is real human beings I want.”2

Nietszche raised two questions: What does it mean to study human beings in all their humanness? And, what methodology is required for this kind of study?

Max Van Manen writes that from a phenomenological point of view, to do research is to always question the way we experience the world, and to want to know the world in which we live as human beings:

And since to know the world is profoundly to be in the world in a certain way, the act of researching – questioning – theorizing is the intentional act of attaching ourselves to the world, to become more fully part of it, or better, to become the world. Phenomenology calls this inseparable connection to the world the principle of “intentionality.”3

Edmond Husserl, from the very beginnings of phenomenology, calls intentionality the “fundamental property of consciousness” and the “principle theme of phenomenology.” Each state or experience is in this way a representation of something other than itself and so gives one a sense of something. This representational character of mind or consciousness – being “of” or “about” something – is “intentionality.” Intentionality is something we know about first and foremost from “first-person” knowledge of our experiences and their “internal” character. It is a property our experiences have in themselves, as subjective experiences independent of any of their actual relations to the external world. Intentionality cannot be explained from a purely objective, “third-

1 Frederick J.J. Buytendijk, Het Kennen van de Innerlijkheid (Utrecht: N.V. Dekker and van de Vegt. 1947), 22. 2 Max van Manen, Researching Lived Experience: Human Science for an Action Sensitive Pedagogy (Ontario: State University of New York, 1990), 5. 3 van Manen, Researching Lived Experience, 5.

1 person” point of view if such a viewpoint cannot accommodate this internal and subjective character of our experiences.4

Relevance and importance of this research

In honouring the concept of intentionality this research explores the meaning of spirituality as it is understood and experienced by adults labelled with intellectual disability. What is the first-person knowledge and experience about the spirituality of individuals who, down the ages, have often suffered from not being considered as ‘real’ people? How might this new knowledge contribute to enhanced lives for this cohort of people?

Through Participatory Action Research (PAR), within the field of Practical Theology, this social action research collaborated with adults with intellectual disability by listening to and learning from their perspectives of spirituality and its influence on their lives. They are ‘real’ people with ‘real’ experiences which need to be recognised and validated.

Whilst the exploration of this topic is located in the Australian context (State of Victoria) there are similar pursuits within the international scene. The L’Arche movement has had an enormous influence in attracting the interest of researchers to this area of endeavor.5 Whilst L’Arche itself has not sought to be a locus of research, its unique presence and support of people, as friends rather than professionals, has generated significant interest in issues of ethics and the spirituality of people with intellectual disability.

This research, a partnership with 14 co-researchers with intellectual disability, explored the meaning of spirituality, including the importance of friendship. In collaboration with the Self-Advocacy network of the Victorian Advocacy League for

4 Ronald McIntyre and David Woodruff Smith, “Theory of Intentionality,” in J. N. Mohanty and William R. McKenna, eds., Husserl’s Phenomenology: A Textbook (Washington, D. C.: Centre for Advanced Research in Phenomenology and University Press of America, 1989), 147-179. 5 Founded in 1964 by Jean Vanier, L’Arche has 147 communities in 35 countries as at 2015. The ‘lead’ tenants are people with intellectual disability who share their lives with caring supporters in an intentional Christian community. In 1980 I lived in L’Arche’s ‘Little Ewell’ community in Kent, UK.

2 Individuals with Disability Inc. (VALID),6 the ‘first-hand’ accounts of these 14 adults informed responses to the two research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

These questions emerged from and reflect my personal and professional interest and involvement, particularly as a ‘bridge-builder’ and interpreter within these realms. Lying at the heart of this endeavor is concern for spirituality’s essential role in the enhancement of the quality of life of both individual and communal life. This research contributes to a growing body of international research in this field.

Summary of Chapters

In locating this social action research’s purpose and questions, Chapter 1 provides an historical context from post-medieval times of both Church and society’s response to the care and rights of people with intellectual disability. This includes the emergence of the disability rights movement and disability studies, and in turn, their influence on scholarship and practice within the field of disability theology. Issues of loneliness and friendship are discussed as key elements of people’s quality of life. The Victorian research context is outlined as are personal factors which have been influential.

Chapter 2 provides a provisional and working understanding of spirituality and its relationship with religion. With particular focus on scholarship and literature since the 1960s an understanding and foundational dialogue of the relationship between spirituality and disability is explored, including mages which reflect this relationship. This provides the backdrop for a review of literature in the field of spirituality and intellectual disability. Six themes are identified and explored, with one, Spirituality and Friendship, prefigured as the content for Chapter 3.

6 VALID Inc., the peak organisation in the Victorian disability sector, represents adults with an intellectual disability and their families. VALID is run by and for people with disability and family members.

3 Chapter 3 explores contemporary definitions and characteristics of friendship and also some perspectives on friendship since medieval times. The historical foundations of friendship are explored; both classical and biblical. The notion of friendship as a response of ‘gift and call’ is based on five biblical themes, with specific consideration given to key elements of the relationship between spirituality, friendship and intellectual disability. A summary of research projects investigating spirituality and intellectual disability concludes the chapter.

Chapter 4 locates myself as a practical theologian within the ‘world’ of practical theology and theological reflection, focussing on the theological reflection models and approaches that frame the research. The important application of praxis and social analysis to the research questions will be detailed. The relationship of practical theology to action research is considered, providing a bridge to discussion of, and rationale for the chosen qualitative research methodologies and methods outlined in Chapter 5.

Chapter 5 emphasises phenomenology’s commitment to lived experience and knowledge, described and interpreted via the textual practice of reflective writing. Key exponents of phenomenology are referenced, providing the rationale and basis for the chosen methodologies and methods. The overarching methodologies were Interpretive Hermeneutic Phenomenology (IHP) and Participatory Action Research (PAR), whilst methods used included interviewing and focus groups.

Chapter 6 details the engagement with staff of VALID and the appointed Expert Group. The design and implementation of the research is detailed and includes processes of recruitment, interviewing and transcription of the interviews. Ethical considerations are discussed as are issues of rigour and validity and steps undertaken to satisfy these. Significant is VALID’s consequent response in developing a ‘Statement of Spirituality’, the first time in Australia that a non-faith based organisation in the disability sector has developed such a policy position.

Chapter 7 describes the 14 people’s responses to the 10 interview questions, and development of themes. Using Interpretive Phenomenological Analysis (IPA), an initial 22 themes from the 10 questions were identified (Stage 1), with 4 themes (Stage 2) leading to two superordinate themes, being connectedness with others and with

4 God/deity and self. Drawing on selected responses from within each question, friendship is established as the pinnacle of relationship with a questioning focus on how faith communities can respond in friendship with people with intellectual disability.

Chapter 8 places the accounts of the interviewees on centre-stage, with an in-depth interpretation of the ‘grounded meaning’ they ascribe to the phenomenon of their spirituality. A spirituality defined by relationships and connectedness is central. Discussion of friendship in the context of philos, eros and agape lays the foundation for consideration of a response by Christian faith communities. This addresses the first research question and is the focus of Chapter 9.

In seeking an embrace of friendship, Chapter 9 engages Walter Brueggemann’s theological schema of ‘Prophetic Imagination’, positing a new orientation. Two functional qualifiers, critical and energiser provide a framework to (i) challenge exclusionary influences and (ii) engage understandings and appreciation of pre- conditions and actions required for a new orientation of friendship.

Chapter 10 addresses the second research question and focuses on the role this action research has played in advancing recognition of spirituality’s importance in the disability services sector, at both a state and national level. The stories of these 14 people, and of my own role as a ‘bridge-builder’, are central to the development of VALID’s ‘Statement of Spirituality’, which in turn seeks to influence policy of faith communities and the National Disability Insurance Scheme.

See below Figure 1 for a visual representation of the inquiry.

5

Figure 1: Components of the Inquiry

6 Chapter 1: Setting the Scene

1.1 Problem and purpose

The two research questions are deliberately coupled in this order: consistent with “intentionality” the first question seeks “first-person” knowledge of people’s experiences, which in turn provides the basis and evidence for faith communities and policy-makers to consider their responses. The research approach, in which adults with intellectual disability are directly consulted, and their opinions taken seriously, has been relatively unknown until the latter part of the twentieth century, and will be detailed in Chapter 5.

The following sections will provide an historical global overview in both the Christian Church and society at large. In drawing parallels with the Australian context it will also include discussion about the disability rights movement and the emergence of Disability Studies and its influence on disability theology.

1.1.1 Historical global context

Throughout the world and across all cultures, people labelled as ‘mentally retarded’, ‘mentally deficient’, ‘intellectually disabled’ or ‘cognitively impaired’,1 have been, with rare exceptions, historically scapegoated and excluded from mainstream communal life. The ascription of labels has also supported the development of an ‘industry of professionals’ whose work and understanding of their professional relationship has been based upon and was an expression of these varying definitions.2 Due to difference or implied deviancy, people with intellectual disability have historically been regarded as people without the ability, means or power to actively participate in, or contribute to community life. I recall growing up as a teenager hearing the following phrases which reflected this sense of difference and lack of agency:

1 ‘Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18’. This definition comes from the American Association of Intellectual and Developmental Disabilities (AAIDD), and is generally adopted in Australia. This thesis will adopt person-first language and utilize the term ‘people or person with intellectual disability’, in recognition that people often have a secondary disability (autism/epilepsy). This is the accepted term in Australia. 2 Gordon Grant “et al.” . A Life Cycle Approach to Valuing People (Berkshire: Open University Press, McGraw Hill Education, 2005).

7 “She’s a sandwich short of a picnic,”

“He’s not the sharpest tool in the shed.”

It has also been assumed that decisions need to be made on their behalf. Their voices and opinions have been neither encouraged nor sought, and prejudice in a range of life areas has been rife. They have been shunned, ridiculed and seen as objects of pity.3 Shocking abuse has been perpetrated in the name of eugenics, which was finally and totally discredited when that social experimentation devolved into the Holocaust. Denial of sexual and reproductive rights for women and girls with intellectual disability continues to be rife in many countries, including Australia.4

The next two sections will trace the historical origins of exclusion of people with intellectual disability from mainstream society, and also some of the influences within the Christian Church which have shaped contemporary responses. For purposes of this research, these responses cover the medieval period up to the twenty-first century.

1.1.2 Post-medieval period

Michel Mollat describes the thirteenth century as a time of great social upheaval characterized by the development of cities and mass movements of poor people owing to pestilence and famine. That century witnessed the beginning of segregation of poor people, with Peregrine of Oppeln being one of the first to divide the poor into categories according to their differentness. Mollat referred to eleemosyna in which donors, for the purposes of their own salvation, designated gifts to specific categories of recipients, which by the thirteenth century included invalids.5 Leonardo Boff refers to Mollat’s definition of the poor in terms of relationships and power:

He is the one who temporarily or permanently finds himself in a situation of weakness, dependence, humiliation, characterized by the lack of

3 Ian Parsons, Crips, Coons, Fags and Fems: A look at how Four Human Rights Movements have Fought Prejudice (Geelong: Villamanta Publishing Service Inc., 1999). 4 http://wwda.org.au/wp- content/uploads/2013/12/issues_paper_srr_women_and_girls_with_disabilities_final.pdf accessed 26 July, 2018. 5 Michel Mollat, The Poor in the Middle Ages (New Haven and London: Yale University Press,1986), 1-129.

8 means, variables according to the age and society, means of power and social consideration: money, relationships, influence, power, science, technical qualifications, honorable birth, physical strength, intellectual ability, personal freedom, and dignity. Living day to day, the poor has no chance of changing his state without the help of another.6

Reviewing St Francis of Assisi’s influence at that time, Boff points out that the thirteenth century was also characterized by religious movements based on the evangelistic and apostolic life, imitating the poor Christ and the radical living of poverty. The Waldensians, the Albigensians and others were reflected in the Franciscans who were an expression of this general movement. The step was thus taken from liberalitis erga paupers (generosity to the poor) to conversation inter paupers (living with the poor). Boff claims this became the forerunner of the modern preferential option for the poor and oppressed.7

This step from ‘generosity to the poor’ to ‘living with the poor’ underpins this research’s Participatory Action Research (PAR) approach; it is highly significant to me that this preferential option for people is adopted alongside people whose voices have historically been overlooked. It is also consistent with Gustavo Gutierrez’s exposē of liberation theology which seeks justice for people who are oppressed because the “God of Biblical revelation is known through inter-human justice. When justice does not exist, God is not known; he is absent.”8

During the medieval period, people who were considered to be ‘imbeciles’ or ‘idiots’, if not living within family and kinship structures, were often cared for by houses established by local Christian parishes and priests. The forces of the Reformation and the advent of the Industrial Revolution saw changes in how societies responded to caring for people with intellectual disability. Wolf Wolfensberger notes that prior to the Reformation, large numbers of people were cared for in the hospice movement run by religious orders committed to service in celibacy and poverty. The Reformation’s elimination of these orders in Protestant northern Europe, coupled with the

6 Leonardo Boff, Saint Francis – A Model for Human Liberation (New York: Crossroad Publishing, 1982), 51-52.Original translation from Michel Mollat, Les pauvres au moyen-age, (Paris: Hachette, 1978). 7 Boff, Saint Francis, 56. 8 Gustavo Gutierrez, A Theology of Liberation (London, SCM Press, 1974), 195.

9 Renaissance’s emphasis on rationality, science and learning, contributed to the ‘commercialization’ of services, and development of huge institutions to congregate all the unwanted people of society.9

Large communal care facilities or institutions continued to be the principal means by which people were warehoused, usually in appalling conditions, with substandard food, accommodation and access to medical care. Bureaucratic management of large numbers of people invariably led to the views and interests of staff taking precedence.10

During the nineteenth century and well into the twentieth, the poor were therefore seen as either deserving or undeserving. Poverty tended to be portrayed in moral rather than economic terms and charity came to be viewed as a means of social control as well as affording the opportunity to expiate the benefactor’s guilt. People with disability were, by and large, viewed as deserving poor, on account of differentness and inability to contribute to material development of the times.11 The irony of the deserving poor was that they were expected to suffer in silence, thus making it more expedient for government to house them in large impersonal institutions without the risk of dissent.

Robert Perske, writing as a chaplain, noted that in spite of the shift to these state- sanctioned institutions, there was still a place for religious representatives to provide sustenance and succor.12 In some instances when located close to institutions, faith communities appointed people to visit residents and families, and sometimes chapels were constructed and religious ceremonies conducted.

Within this historic context, as a young teenage member of my Presbyterian Fellowship of Australia (P.F.A.) youth group in the 1960s, I recall visiting such a large congregate institution, Kew Cottages, Melbourne, to sing Christmas Carols to the residents. I witnessed for the first time the dismal and shocking conditions in which

9 Wolf Wolfensberger, “An Attempt Toward a Theology of Social Integration of Devalued/Handicapped People,” in The Theological Voice of Wolf Wolfensberger, (eds.) David L. Coulter and William C. Gaventa, (New York: Haworth Pastoral Press, 2001), 53-58. 10 Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, (New York: Doubleday, 1961), 9. 11 Graeme Davison and David Dunstan and Chris McConville, (eds.) The Outcasts of Melbourne: Essays in Social History (Sydney: Allen and Unwin, 1985), 105. 12 Robert Perske, “Chaplain’s Role in an Institution for the Mentally Retarded.” McCormick Quarterly XIX (March, 1966): 40-53.

10 people lived, and began questioning why there was such displacement from regular community life.

1.1.3 Late twentieth century responses

Internationally, until the mid to late twentieth century with some exceptions, the lived experience of people with intellectual disability continued to be largely one of exclusion from mainstream society.13

The ideology of normalization strongly influenced the movement of deinstitutionalization. In its recognition of people with intellectual disability as equals in all senses of the word, the movement espoused the principle of people leading ‘valued’ lives in which basic dignity and respect were affirmed within the general community. No longer were their lives to be defined by homogenous responses in which needs were assumed to be the same and individuality denied. Originating in Scandinavia, Bengt Nirje systematically developed the principle, framing it as:

… making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.14

It was further developed by Wolfensberger in his seminal work ‘Normalization’ in 1972.15 This move from segregation to integration, also influenced by the disability rights movement in the , at least saw some religious representatives facilitating a complementary approach to that of providing pastoral and religious services ‘on-site’: namely, ‘mainstreaming’, in which people were transported and ‘hosted’ by surrounding faith communities for worship, social interaction and friendship. The research topic under consideration was in part stimulated by my placement as an intern chaplain at the Hunterdon Developmental Centre, Clinton, New Jersey in 1994, as a Clinical Pastoral Education (CPE) student under the supervision of Rev Bill Gaventa; a key bridge-building role which involved ‘mainstreaming’

13 Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Random House, 1993), 4-5. 14 Bengt Nirje, “The Normalization Principle and its Human Management Implications,” in Changing Patterns in Residential Services for the Mentally Retarded, (eds.) R. Kugel and W. Wolfensberger, (Washington: President’s Committee on Mental Retardation, 1969), 181. 15 Wolf Wolfensberger, The Principle of Normalization in Human Services, (Toronto: National Institute on Mental Retardation, 1972.)

11 initiatives with local churches and synagogues. This will be discussed in more detail in Section 1.6.

1.2 Disability rights movement

The disability rights movement began in the 1960s, encouraged by the examples of the African-American civil rights and women’s rights movements. One of the most important developments of the disability rights movement was the growth of the movement which emerged in California in the 1960s through the advocacy of Edward Roberts and other -using individuals. This movement, a subset of the disability rights movement 16 postulated that people with disability are the best experts on their needs, and therefore they must take the initiative, both individually and collectively, in designing and promoting better solutions as well as organising themselves for political power.17

The United Nations International Year of Disabled Persons (IYDP) in 1981 was a pivotal moment in the raising of global awareness about the segregation and alienation of people with disabilities. This was manifested in media exposure of people’s sub- optimal life circumstances, the need for revised community attitudes and expectations of people’s capacities, and the need for significant attention to be given to the built environment. In naming the hindrances which perpetuated exclusion and the need for revised expectations, Gerard Goggin and Christopher Newell powerfully named people’s experience as a social ‘apartheid’.18 Darla Y. Schumm and Michael Stoltzfus summarize this ‘apartheid’ in political and social access terms:

… In challenging society’s definition of disabled bodies as flawed and incapable, people with disabilities have refused to tolerate discrimination in employment, restriction from public buildings, isolation from educational opportunities, and lack of access to medical care or legal protection … full participation goes beyond issues of institutional

16 Roberts, a student of the University of California, Berkeley was a student by day and patient by night at the onsite Cowell Hospital. With significant media coverage, he led a group of students with physical disabilities in advocating for accessible off-campus housing. 17 Shapiro, No Pity, 49-55. 18 Gerard Goggin and Christopher Newell, Disability in Australia: Exposing a Social Apartheid, (Sydney: UNSW Press, 2005).

12 accommodation and physical modification to include issues of attitudinal orientation and participatory availability.19

A number of stories emerged from the late twentieth century as people challenged the suitability of large institutions, with calls for them to be closed. One such story in Australia was subsequently made into a major Australian television feature film.20 This resistance gained momentum through the 1980s and 1990s as political pressure by numerous advocacy groups drew attention to the degraded lives of residents, lives that lacked basic rights to a decent life, and exposure to high levels of abuse.

Joseph Shapiro writes of this struggle:

The change in their mind-set is powerful enough to win rights and perhaps eventually convince a nation and the world that people with disabilities want neither pity-ridden paternalism nor overblown admiration. They insist simply on common respect and the opportunity to build bonds to their communities as fully accepted participants in everyday life.21

The global experience of deinstitutionalization has been mirrored in the Australian context. Most of the large institutions that housed generations of people with disabilities – out of sight and out of mind – have now been closed. In Victoria, one story which symbolized this struggle was that of Annie McDonald, who as a young child with cerebral palsy was placed in St. Nicholas’ Hospital in Melbourne. As a young woman, Annie’s speech pathologist, Rosemary Crossley22 used facilitated communication, to establish a strong relationship in which Annie communicated her distress and hatred of living in that facility. With media coverage and public campaigning, the facility was closed, with residents being moved to alternative, more

19 Darla Y. Schumm and Michael Stoltzfus, preface to Disability and World : An Introduction, by Darla Y.Schumm and Michael Stoltzfus, eds. (Waco, Texas, Baylor University Press, 2016), xiv-xv. 20 John Roarty, Captives of Care (Sydney: Hodder & Stoughton. 1981). 21 Shapiro, No Pity, 332. 22 Andrew Solomon, Far from the Tree: Parents, Children, and the Search for Identity (New York: Scribner, 2012), 391.

13 humane living conditions. A subsequent book called ‘Annie’s Coming Out’ chronicled this journey from institutional life to living in Crossley’s home.23

Anti-discrimination legislation refined during this era responded to the understanding that societies tend to be built around the needs and interests of the people who have power, rather than around the needs and interests of everyone. It is therefore no surprise that people with intellectual disability are discriminated against. Their needs are defined as ‘special’; by implication this means society draws a line of ‘exclusiveness’, deciding that it lacks the capacity to cater equally for all.24

Concomitant with deinstitutionalization and anti-discrimination legislation, the disability rights movement has challenged labels and names ascribed to people with intellectual disability. Labels and names have been the ‘warranted ascription’ by those who have the power to define others and who through their power, claim the label to be warranted. At any given point in history the particular label has supported ‘an industry of professionals’ whose work and understanding of their relationship with people with intellectual disability was both based upon and an expression of these varying definitions.25

The ways in which people with disability are portrayed and treated within society embody an interdisciplinary approach called Disability Studies. The next two sections provide an overview of its influence and theoretical foundations, and how it continues to shape disability theology.

1.3 Disability studies: Overview

1.3.1 Influence and theoretical foundations

Disability Studies re-imagines human disability by focussing attention on the fact that disability is as much a social issue as it is a biological or psychological one. Disability

23 Rosemary Crossley and Anne McDonald, Annie’s Coming Out (Penguin. Melbourne. 1980). After moving out of St Nicholas’ Hospital McDonald changed her name from Annie to Anne, as an expression of her wish not to be infantilised. 24 Ian Parsons, Oliver Twist Has Asked for More: The Politics and Practice of Getting Justice for People with Disabilities (Geelong: Villamanta Publishing Service, 1994), 27-28. 25 Gordon Grant “et al.” “The Construction of Learning Disability,” in Learning Disability: A Life Cycle Approach to Valuing People, eds. Gordon Grant, Peter Goward, Malcolm Richardson, Paul Ramcharan (Berkshire, England: Open University Press, 2005), 1.

14 is a social construct, the product of negative beliefs, values, assumptions, policies and practices.26 For Sharon Betcher, this social construct is based on an intersubjective process of locating the self by excluding and then controlling difference:

Creating the other as deviant object, often accomplished by psychically unloading and projecting upon him or her what one finds objectionable in one’s self, conversely creates the self as sovereign subject.27

Until the 1960s the medical model was the prominent approach to understanding and defining the lives of people with disabilities. This model locates the so-called ‘problem’ of disability within the individual: emphasis is on treating or curing bodies or minds, with the pathology and impairment of the individual being the principal focus.28 This para is not both sides justified.

Social-model theorists sought a corrective to the medical model, arguing that disability can best be understood as an interactive process at both micro and macro levels. This more comprehensive approach, in rejecting the medical model, re-locates the so- called ‘problem’ of living with a disability from the individual body with impairments to the social and political structures that prevent full participation in all domains of life. This social model of disability asserts that societal responses to impairment are disabling. Society is required to make adjustments, rather than the individual, with political empowerment of those identified as ‘disabled’ being the way to effect change. Mike Oliver observes that the social model “has resulted in unparalleled success in changing the discourses around disability, in promoting disability as a civil rights issue.”29

Since the 1990s some disability theorists have preferred to use the cultural model of disability which does not seek to differentiate impairments in a way that might artificially distance the social experiences of people with disabilities from their biological realities. The cultural model examines how notions about disability and

26 John Swinton, “Who is the God we Worship? of Disability: Challenges and New Possibilities,” International Journal of Pastoral Theology 14, (2011): 278. 27 Sharon V. Betcher, Spirit and the Politics of Disablement (Minneapolis: Fortress Press, 2007), 6. 28 Jerome E. Bickenbach, and Social Policy (Toronto, Ontario: University of Toronto, 1993). 29 Mike Oliver, “Defining Impairment and Disability: Issues at Stake,” in Exploring the Divide: Illness and Disability, eds. Colin Barnes and Geof Mercer (Leeds: The Disability Press, 1996), 39.

15 nondisability (or able-bodiedness) operate within a given culture. It analyses how a culture’s representations and discussions of disability and non-disability help to articulate a range of values, ideals, or expectations that are important to that culture’s organisation and identity.30

The social model of disability continues to influence dialogue and change and has been linked to the civil rights model in which people with disability are likened to an oppressed minority group requiring liberation from practices of oppression, exclusion and injustice. In Australia this prompted the Disability Discrimination Act 1992. Disability rights researchers reflect this by challenging the researcher’s domination of research goals and have called for disability research which is based on the experience of people with disability and which has a benefit to them.31

Over twenty years ago, Susan Taylor put this case unequivocally stating that ‘the perspectives and experiences of people labelled mentally retarded (sic) must provide a starting point for all research and inquiries in the study of mental retardation (sic)’.32 The proposed research is also influenced by the work of strategic practical theologians. John Swinton and Elaine Powrie undertook participatory action research with people with intellectual disability, pioneering research with this population and providing a framework in which people move from being the objects of research to subjects and co-researchers. 33

The increased recognition of people’s capacity for self-determination, having agency over one’s life, has seen a further shift in understanding the lives of people with disabilities. The movement to a social-ecological model of disability defines disability as the interaction between personal competencies and contextual demands. There is an increased recognition of the role personalised supports play in addressing the gaps

30 Nyasha Junior and Jeremy Schippers, “Disability Studies and the Bible,” in New Meanings for Ancient Texts: Recent Approaches to Biblical Criticisms and Their Applications, eds. Steven L. McKenzie and John Kaltner (Westminster: John Knox Press, 2013), 23. 31 John Swinton and Harriet Mowat, Practical Theology and Qualitative Research (London: SCM Press, 2007), 229. 32 Susan J. Taylor, “Disability Studies and Mental Retardation,” Disability Studies Quarterly 16, no. 3 (1996): 4-6. 33 John Swinton and Elaine Powrie, Why are we Here: Understanding the Spiritual Lives of People with Learning Disabilities (London: Foundation for People with Learning Disabilities, 2004), 5.

16 between personal competencies and contextual demands, as well as the emphasis of building on the strengths and capacities of people.34

Swinton describes the assumptions within disability studies:

… disability is the product of malignant social practices which require social, cultural and political change rather than simply the rehabilitation of individuals. Within this perspective disability is not something that one has; rather it is something that one is given or has bestowed upon one in and through the relationships and practices of one’s community.35

1.3.2 Influence on disability theology

Disability Studies has significantly influenced how theologians and faith communities have approached critical examination of what it means to be a human person, has helped identify themes of disability within the biblical literature and has highlighted how people marginalised by disability are reconceptualised as members and contributors in their own right.36 This is the realm of disability theology, and the literature to be reviewed and explored in Chapters 2 and 3 draws on the following definition:

Disability theology is the attempt by disabled and non-disabled Christians to understand and interpret the gospel of Jesus Christ, God, and humanity against the backdrop of the historical and contemporary experiences of people with disabilities. It has come to refer to a variety of perspectives and methods designed to give voice to the rich and diverse theological meanings of the human experience of disability.37

Chapter 2 provides an overview of literature in the emerging field of disability theology, and a description of accompanying images which illuminate these interpretations. A provisional and universal understanding of the term spirituality will be explored, providing the foundation for a working definition for this particular research. Themes in the disability theology literature related to spirituality and people with intellectual

34 Karrie A. Shogren, “Self Determination and Self-Advocacy,” in Critical Issues in Intellectual and Developmental Disabilities: Contemporary Research, Practice, and Policy (Washington: American Association on Intellectual and Developmental Disabilities, 2016), 2. 35 Swinton, “Who is the God we Worship?” 280-281. 36 Sarah J. Melcher, introduction to The Bible and Disability: A Commentary, eds. Sarah J. Melcher and Mikeal C. Parsons and Amos Yong (Waco, Texas: Baylor University Press, 2017), 1-3. 37 Swinton, “Who is the God we Worship?” 274.

17 disability will be outlined, inclusive of the spirituality and friendship theme. That theme, which is the particular interest of this thesis, will be the detailed focus of Chapter 3.

Within Australia, no social action research with this particular cohort and the topic of spirituality is known to have been undertaken. Whilst matters of the spirit are never curtailed by legislation, it is contended nonetheless that a culture of diversity and inclusiveness which recognizes equal rights and opportunities for all, creates an environment where expression of spirituality can more readily flourish individually and corporately.

The following sections outline the Australian and Victorian context in which the research is being undertaken, including the legal context, the policy of social inclusion, and an overview of Victorian responses to the spiritual and health needs of people in its care.

1.4 Research context: Australia and Victoria

18.3% of the Australian population identifies as a person with a disability, according to the results of the Survey of Disability, Ageing and Carers (SDAC) (Australian Bureau of Statistics (ABS), 2015).

According to the Australian Bureau of Statistics (ABS):

Intellectual disability is a term used to describe a reduced ability to understand new or complex information and to learn and apply new skills.38

Classification systems have been developed to quantify people’s capacity to learn based on Intelligence Quotient (IQ). An internationally recognized IQ measure below 70 has been the marker to define a person with intellectual disability: (55-70 mild; 30- 55 moderate and under 30 as severe).39 These give some guide to the level of support someone might need but the way that person functions in their life will depend on many

38 ABS 2015 results confirm incidence of intellectual disability has remained steady since 2012 when there were around 668,100 Australians (2.9%) with intellectual disability. http://www.abs.gov.au/ausstats/[email protected]/0/C258C88A7AA5A87ECA2568A9001393E8?Opendo cument accessed 29 January, 2018. 39 The AAIDD Definition and Classification Manual now classifies along the lines of Supports rather than IQ cut-off points.

18 other factors such as personality, coping strategies, the presence of other disabilities (motor, social or sensory) as well as the support provided to them by their social network and community. In the Victorian 2013 Health Survey of People with an Intellectual Disability, most people in every age group (18 – 39, 40 – 59 and 60+) had moderate or high level of support needs.40

The need for support with core activities may not fully reflect what an individual with intellectual disability requires to participate in society. Even though they may function relatively well in the familiar routines of self-care and domestic life, and be independently mobile, people with intellectual disability often have considerable difficulty in managing emotions and relating to other people. It is therefore important to also consider the level of support that is needed in non-core activity areas, especially making friendships, maintaining relationships and interacting with others.41

Australia’s 2016 census reveals a religiously diverse nation with 52% identifying as Christian, with Catholicism being the largest Christian grouping (22.6%). The 52% figure is considerably down from an 88% figure in 1966, and is accounted for by 30% of people now reporting no religion, with (2.6 per cent) and (2.4 per cent) being the next most common religions reported. had the most significant growth between 2006 and 2016, driven by immigration from South Asia.42 Many of those who say they have no religion nevertheless describe themselves as religious, engage in spiritual practices such as prayer, or profess a belief in God or a spiritual entity.43

The State of Victoria is a multi-cultural, multi-faith and cosmopolitan society. Successive waves of immigration since colonisation in the 1830s means that Victoria has incorporated many changes within its social fabric, resulting in a diversity of cultures, beliefs and relationships. Victoria has an excellent culture of ecumenical and

40 https://www2.health.vic.gov.au/public-health/population-health-systems/health-status-of- victorians/survey-data-and-reports/health-survey-of-people-with-an-intellectual-disability/health- survey-of-people-with-an-intellectual-disability-2013, accessed 29 January, 2018. 41 Australian Institute of Health and Welfare AIHW 2008, “Disability in Australia: Intellectual Disability”, AIHW Bulletin no. 67 Cat. No. AUS 110, Canberra: AIHW. 42 http://www.abs.gov.au/AUSSTATS/[email protected]/mediareleasesbyReleaseDate/ 7E65A144540551D7CA258148000E2B85?OpenDocument accessed 29 January, 2018. 43 Gary Bouma, “Defining Religion and Spirituality,” in The Encyclopedia of Religion in Australia, ed. James Jupp (Cambridge: Cambridge University Press, 2009), 22-23.

19 interfaith dialogue, as evidenced by bodies such as the Victorian Council of Churches (VCC), the Faith Communities Council of Victoria, the Jewish-Christian-Muslim Association (JCMA) and a multi-faith advisory group to advise the government via the Victorian Multi-Cultural Commission (VMC). Such bodies play a significant role in promoting harmony and social inclusion. The current research, focussed on people with intellectual disability, is situated within this faith and social/cultural context. Even in a contemporary secular society such as Victoria, faith is an important aspect of many people’s lives, and is the reason individuals and families participate in faith and religious activities, or identify with a faith community.

In the realm of faith, when considering people with intellectual disability, questions may still emerge: “Is faith really important to them?” or “Can they really understand?” or “Would they really get anything out of participating?” William Gaventa writes that to assume spirituality is irrelevant to a person simply on the basis of a label of intellectual disability is one of the deepest forms of prejudice. Someone’s ability to thoroughly grasp complex theological doctrines or to express his or her beliefs in the same way as everyone else neither negates nor diminishes his or her faith.44

It is hoped the research outcomes will contribute in three ways to an enhanced profile of the issue in public discourse and thus:

(i) Add to current knowledge about this phenomenon. The primary source of such knowledge will be adults over 18 years of age, who self-identify with an intellectual disability. These people were co-participants in this Participatory Action Research (PAR), and were members of VALID Inc.

(ii) In collaboration with VALID, effect change which enhances the possibility of people with an intellectual disability giving expression to their spirituality, including friendship within existing faith communities or other contexts/modes of their choosing.

(iii) Effect policy change at state and federal levels of government. In particular, to have the dimension of spirituality recognized as integral to the lives of

44 William C. Gaventa, “A Place for ALL of me and ALL of us: Rekindling the Spirit in Services and Supports”, Mental Retardation 43, (2005): 48-54.

20 adults with intellectual disability within State Disability Action Plans and the National Disability Insurance Scheme (NDIS).45

As a pastoral care practitioner with concern for individuals, I recognize that many things which affect the well-being and growth of individuals for good or ill originate in the wider social and political order. Stephen Pattison’s critique is pertinent:

… seeing the nature of pastoral care as being solely concerned about individuals is a misrepresentation. Pastoral care has social and political implications and consequences. Sometimes the only truly pastoral action is political action.46

1.4.1 Legislation: International, Australian and Victorian

Following the horrors of World War 2, the Universal Declaration of Human Rights (1948) offered protection for people with disabilities, including intellectual disability. The General Assembly of the United Nations issued the Declaration of General and Specific Rights of the Mentally Retarded (1971). This provided a moral justification for legislation that was enacted upon by governments of Western countries promising opportunities for people with intellectual disability to be a part of mainstream society.

The Declaration of the Rights of Disabled People followed in 1975 and The Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) defined the societal pre-requisites of equality. In 2006, the Standard Rules were replaced by the United Nation’s Convention on the Rights of Persons with Disabilities (2006), which was formally adopted by the Australian government in 2008. The Convention states the socio-political conditions for achieving equality, autonomy, non-discrimination, participation and inclusion in society, including the importance of religion. The Convention addresses the following life domains: rights (access and privacy); participation; autonomy, independence and choice (i.e. self-determination); physical well-being (work/employment); social inclusion, , and participation;

45 The National Disability Insurance Scheme (NDIS), governed by the National Disability Insurance Agency (NDIA), provides individualized packages of support to eligible people with disability. When fully implemented in 2019, it is expected that around 460,000 Australians will receive packages. 46 Stephen Pattison, A Critique of Pastoral Care (London: SCM Press, 2000), 88.

21 emotional well-being (freedom from exploitation, violence and abuse); and personal development (education and habilitation).47

Within Australia the Disability Discrimination Act 1992 (DDA) makes it unlawful to discriminate against people on the basis that they might or might not have a disability. Across the spectrum of disability, this includes people with mental health issues, and people with physical, intellectual, sensory, cognitive or neurological impairment. In Australia, religious communities are not exempt from the requirements of this legislation.

Victorian legislation in relation to people with disabilities is underpinned by the Equal Opportunity Act 1995, the Disability Act 2006 and the Charter of Human Rights and Responsibilities Act 2006, each affirming the full participation of people with disabilities in all dimensions of community life.

The afore-mentioned matrix of legislation, designed to enshrine the rights of vulnerable people, forms the basis of federal and Victorian state government policy frameworks and strategies which emphasise social inclusion.

1.4.2 Social inclusion – Victoria

The 2014 Parliamentary Inquiry into Social Inclusion and Victorians with Disability determined that social inclusion in the context of disability should be understood in the same way it is for all people in the community. The Inquiry concluded that there are three key elements – involvement in activities, maintaining reciprocal relationships, and having a sense of belonging.48

Involvement in activities included structured recreation, leisure, church, volunteer, and the use of community amenities. Developing and maintaining reciprocal relationships were important with family, friends, co-workers and acquaintances in the community. A person experienced a sense of belonging when she/he was accepted by others, seen as an

47 Within the Preamble of the Convention, item (c) is concerned about the difficult conditions faced by persons with disabilities subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status. 48 ‘Inquiry into Social Inclusion and Victorians with Disability’ report. Family and Community Development Committee. Parliament of Victoria (September 2014): Section 1-1.

22 individual, had positive interactions with others, and was not excluded through marginalisation, teasing or bullying.49

These factors were reiterated by the ‘SHUT OUT’ report:

Disability is characterised by desire for positive change and striving for emancipation and flourishing. It is seen every day amongst people living with disability. It is active hope. We desire a place within the community. This place is not just somewhere to lay down our heads, but a place which brings comfort and support with daily living, friendship meaningful work, exciting recreation, spiritual renewal, (researcher’s emphasis), relationships in which we can be ourselves freely with others. And out of this great things may flourish.50

Some community service agencies, associated with faith-based outreach, have also developed and adopted context-specific social inclusion policies. Broadly speaking, a socially inclusive approach emphasises the importance of each individual having choice about, and control over, how they live their life. By working to build people’s capabilities and material resources, it aims to ensure that all people can participate in community and social life.51

Once shut in, many people with disability ironically now find themselves shut out. The ‘SHUT OUT’ Report concluded that whilst the move towards low-scale residential settings, with improved staff quotas with annual care plans, has undoubtedly created significant progress and improvements in the daily lives of people with intellectual disability many live lonely lives of exclusion and isolation. Where once they were physically segregated, many Australians with disabilities now find themselves socially, culturally and politically isolated. They are ignored, invisible and silent. They struggle to be noticed, struggle to be seen and to have their voices heard.52

This ‘SHUT OUT’ Report reveals how much further society, including faith communities, needs to go in responding to the isolation and loneliness experienced

49 Sarah Hall, “The Social Inclusion of People with Disabilities: A Qualitative Meta-Analysis,” Journal of Ethnographic and Qualitative Research, 3, (2009): 171. 50 “SHUT OUT: The Experience of People with Disabilities and Their Families in Australia,” (National Disability Strategy Consultation Report prepared by the National People with Disabilities and Carer Council: Commonwealth of Australia, 2009): viii. 51 Wesley Mission Victoria, ‘Social Inclusion and Belonging’, Policy 11, 2009. 52 “SHUT OUT”, 11.

23 by people with intellectual disability. Andy Calder provides reasons for the problematic place of religion and spirituality in policy and planning:

In terms of community endeavours and support of social inclusion it is contended that religious communities are the ‘final frontier’ … social research rarely analyses and explores the value and importance of such expression in the lives of people with disabilities … historically and generally within religious communities, people with disabilities have been recipients of others’ largesse, with assumptions made about their interest or capacity to articulate the importance of needs or faith understandings … within a predominantly secular society, religion is perceived as the private domain of individuals and less recognised as integral in the matrix of some people’s lives.53

The next section will outline spiritual care and health interventions when people with intellectual disability were housed in institutions, and subsequent abrogation of responsibility by the state when relocated to contemporary community settings. This lack of recognition of spiritual care’s importance for people with intellectual disability will be contrasted with the state’s response in the aged care and mental health sectors, an inherent contradiction in the application of policy. This topic will demand attention in Chapter 10, in response to the second research question:

(ii) How can the disability services sector respond? What action is needed?

1.4.3 Spiritual care and health – Victoria

During the period 1976 to 1996, the Victorian Government reduced the number of individuals in institutional care from 4439 to 1126.54 As institutions closed, funding was no longer made available for spiritual care/support. The residents were moved to community residential facilities. Did this mean their spiritual needs were no longer important nor part of holistic care? The Health Minister at the time, Hon. Rob Knowles stated: “it is now time for the Churches to provide this spiritual care”.55 This begs the questions: Has government abrogated its responsibility to attend to the spiritual

53 Andy Calder, “To Belong I Need to be Missed,” Journal of Disability Religion and Health 16, no. 3 (2012): 277. 54 ‘Inquiry into Social Inclusion and Victorians with Disability’, Family and Community Development Committee, Parliament of Victoria (September 2014): 1-31. 55 Personal communication with Rev. David Leach.

24 dimension of people entrusted to its care and support? Did government assume people being moved into the community would attend existing faith communities to meet such needs? If so, this does not appear to have been realized. Is there a consequent role for faith communities to raise concerns about this and potentially assume a role in collaboration with government?

Currently within Victoria, Department of Health and Human Services staff and carers do not broach the topic of spirituality/religion/faith when preparing Annual Care Plans with residents with disabilities. Neither the resident, nor any family or friends, are routinely consulted about whether there is interest in practicing the tenets of their faith or expressing aspects of their spirituality. However, in the past two decades in Victoria, in parallel with international trends, the spiritual dimensions of older people and people with mental health issues have been linked closely with their overall health and quality of life, with government responding to those in their care.

A decade ago, the preeminent researcher of the relationship between religion and health, Harold Koenig, cited 1200 studies during the twentieth century which examined some aspect of religious belief or behaviour and some indicators of health, with the majority finding a significant positive association.56 He cautions however that religious or spiritual involvement does not always have positive effects on health, giving examples of negative health outcomes when people’s illness or poor health continues in spite of supplications to God and trusted others.57

Research in the general population also demonstrates links between the quality of a person’s relationship network and both their physical and psychological health.58

The Victorian public health and wellbeing plan 2015 - 2019 however pays scant attention to the issue of spirituality’s importance to health but in discussing place-

56 Harold Koenig, Spirituality in Patient Care: Why, How, When and What (Philadelphia and London: Templeton Foundation Press, 2007), 22. 57 Koenig, Spirituality in Patient Care, 28. 58 Richard Wilkinson and Michael Marmot, Social Determinants of Health: The Solid Facts (Oxford: Oxford University Press, 2003).

25 based approaches to enhancing quality of life and health, does indicate faith-based communities as one of several local, activity-based and identity-based populations.59

In Victoria the entity called Spiritual Health Victoria (SHV), funded by the state government, advocates for spiritual care to be understood as integral to person- centred health care. SHV advocates in the areas of funding, education, professional support and development of Standards for spiritual care in the sectors of aged care and mental health.60 SHV recognizes however, that government policy and response to people’s spirituality is completely lacking in the disability services sector.61 As part of this social action research SHV became an active partner in advocating to the National Disability Insurance Scheme (NDIS) for future recognition of spirituality in the service plans of people with disabilities and this advocacy will be further discussed in Chapter 10.62

In a promising development, according to the World Health Organization (WHO), there are multiple variables that influence the health of people with disability ‘including individual factors, living and working conditions, general socio-economic, cultural and environmental conditions, and access to better health services’.63 In response to the United Nation’s Convention on the Rights of Persons with Disabilities (2006), WHO has been developing a Model Disability Survey (MDS). The MDS is grounded in the International Classification of Functioning, Disability and Health (ICF) and represents an evolution in the concept of disability measurement. It explores disability as an outcome of interactions between a person with a health condition and various environmental and personal factors, rather than focusing only on a person’s health or impairments. Most importantly, for the purposes of this discussion, the dimension of spirituality/religion is recognized as contributing to people’s health and well-being. In the Survey, recognition of spirituality’s importance is evidenced by 2 questions:

59 Victorian Public Health and Wellbeing Plan 2015-2019. Victorian Government: Melbourne, 2015: 45. 60 http://www.spiritualhealthvictoria.org.au/ accessed 1 February, 2018. 61 Personal communication with Chief Executive Officer. 62 The NDIS is governed by the National Disability Insurance Authority (NDIA). 63 World Health Organization (2011) World Report on Disability. Geneva, WHO: 57.

26 Do your regular places of worship make it easy or hard for you to worship? (13005)

How much of a problem do you have with joining community activities, festivities, religious or other activities? (14040) 64

The above discourse offers a brief survey of developments in the past decade or two, in an attempt to draw attention to the increasing recognition that holistic care of a person also requires attention to:

• their spiritual life and its associations with health;

• how that person makes meaning of their life; and

• the influence of spirituality or religion on their life choices, sense of well-being and relationships.

Allied with my research questions, little research has been undertaken to establish links between people’s health and meaningful social interactions with friends. Australian researcher Keith McVilly draws attention to clinical experiences in which people with intellectual disability were referred for ‘behaviour intervention and support’, such behaviour being characteristic of depression and anxiety. These people typically had very few if any significant social connections outside paid carers or members of their immediate family.65

The next section will explore the application of Quality of Life indices in the field of intellectual disability to measuring outcomes based on a number of domains. Surprisingly to this writer, the domain of spirituality is absent in such indices.

Reasons for that are explored as well as its effect on people with intellectual disability residing in Victorian residential care. The following section will explore issues of loneliness. This lays the foundation for understanding friendship as a vital expression of people’s spirituality and provides a framework for analyzing and discussing any related themes that emerge from the research.

64 http://www.who.int/disabilities/data/model-disability-survey4.pdf?ua=1 accessed 26 July, 2018. 65 Keith McVilly, Positive Behaviour Support for People with Intellectual Disability: Evidence-based Practice, Promoting Quality of Life (Putney N.S.W.: Australian Society for the Study of Intellectual Disability, 2002).

27 1.5 Quality of Life (QOL)

1.5.1 Quality of Life indices and spirituality

Rights, as essential as they are, if not accompanied by opportunities to exercise them, are insufficient. Whilst the articles of the UN Convention are focused at the socio- political level, the emerging construct of Quality of Life (QOL) reflects the dynamics of that which is personally desired (subjective) within the reality of the constraints of life (objective). For Trevor Parmenter, this symbolic-interactionist perspective underpins this dynamic, a dynamic in which people learn to interpret and give meaning to the world through interactions with others. For people with intellectual disability, quality of life is determined by self-image and this is subject to conflicting messages where “[o]ne comes from outside and is influenced by the social order. The other comes from within and relates to what they know they can or cannot do.”66

By the end of the twentieth century international recognition of the importance of QOL and its measurement was demonstrated by the work of the WHO in developing effective means to assess the construct.67

For professionals in the field of intellectual disability this construct has become the link between the general values reflected in social rights and the personal life of the individual. QOL models assist in defining the essential dimensions of an individual’s life, and in turn provide a framework to evaluate outcomes. 68

According to Roy Brown et al:

There has been a shift in focus away from the belief that scientific, medical and technological advances alone would result in improved life and toward an understanding that personal, family, community, and society well-being emerge from complex combinations of these advances plus values, perceptions, and environmental conditions. It is

66 Trevor Parmenter, “Inclusion and Quality of Life: Are we There Yet?” International Public Health Journal 6, no.4 (2014): 414. 67 Kenneth D. Keith and Robert L. Schalock, “The Global Perspective on the Concept of Quality of Life,” in Cross-Cultural Quality of Life: Enhancing the Lives of People With Intellectual Disability, eds. Robert L. Schalock and Kenneth D. Keith (Washington: American Association on Intellectual and Developmental Disabilities, 2016), 185. 68 Karrie A. Shogren “et al.” “Public Policy and the Enhancement of Desired Outcomes for Persons With Intellectual Disability,” Intellectual and Developmental Disabilities 47, (2009): 307-319.

28 recognised that the QOL concept represents a next logical advance from the normalisation movement of the 1960s that stressed community- based services and measuring outcomes from the individual’s life in the community. It also includes the growing application of individual human rights.69

Within the field of QOL there is an extensive literature regarding QOL assessment and measurement, and a range of scales and frameworks have been developed, seeking to define the relationships between a number of life domains. The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSID) developed five principles which guide the measurement of quality of lives. These are:

• Principle 1: Quality of life measures the degree to which people have

meaningful life experiences that they value.

• Principle 2: Quality of life measurement enables people to move towards a

meaningful life they enjoy and value.

• Principle 3: Quality of life measures the degree to which life’s domains contribute to a full and interconnected life.

• Principle 4: Quality of life measurement is undertaken within the contexts

that are important to them: where they live, work, and play.

• Principle 5: Quality of life measurement for individuals is based upon

common human experiences and unique, individual life experiences.70

In the field of intellectual disability Wil Buntinx and Robert Schalock, looking back to the mid-1980s, identify three significant impacts of the QOL supports paradigm on

69 Roy I. Brown and Robert L. Schalock and Ivan Brown, “Quality of Life: Its Application to Persons With Intellectual Disabilities and Their Families – Introduction and Overview,” Journal of Policy and Practice in Intellectual Disabilities 6 no. 1, (March, 2009): 5. 70 Robert L. Schalock “et al.” “Conceptualization, Measurement, and Application of Quality of Life for Persons With Intellectual Disabilities: Report of an International Panel of Experts." Mental Retardation 40, no. 6 (2002): 457-470.

29 professional practices. Firstly, the pattern of assessed needed supports has become the basis of individualized education and habilitation planning; secondly, the level or intensity of a person’s support needs is being used as the basis for agency and systems’ planning and resource allocation formulae; thirdly, the supports orientation has brought together the related practices of person-centred planning, personal growth and development opportunities, community inclusion, and empowerment.71

In the United States Robert Schalock and Miguel Verdugo developed a model in their research on quality of life of people with intellectual disability.72 It is accepted worldwide as a useful model, in particular by the American Association of Intellectual and Developmental Disabilities (AAIDD). Eight domains of quality are identified: emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights.

Whilst spirituality’s importance has been acknowledged by some QOL exponents, Alex Liegeois points out that it is remarkable there is no trace of it in these domains. The confessions, traditions, and institutes are regarded as suspicious and the dominant social and cultural climate of the Western world is often characterized by secularization.73

Many QOL instruments have been developed for highly selected groups in the population: one such is the Personal Well-Being Index (PWI) developed by Robert Cummins and Anna Lau with the aim of developing the PWI into a valid cross-cultural instrument. 74 In this original work of 2002 there were seven items in the adult PWI scale, each one corresponding to a quality of life domain: standard of living, health, life achievement, personal relationships, personal safety, community-connectedness,

71 Wil H.E. Buntinx and Robert L. Schalock, “Models of Disability, Quality of Life, and Individualised Supports: Implications for Professional Practice in Intellectual Disability,” Journal of Policy and Practice in Intellectual Disabilities 7, no. 4 (December, 2010): 283-294. 72 Robert L. Schalock and Miguel Verdugo Alonso, Handbook on Quality of Life for Human Service Practitioners (Washington, DC: American Association on Mental Retardation, 2002). 73 Alex Liegeois, “Quality of Life without Spirituality? A Theological Reflection on the Quality of Life of Persons With Intellectual Disabilities,” Journal of Disability and Religion 18, no.4 (2014): 303- 317. 74 Robert A. Cummins and Anna L.D. Dau, “An Introduction to the International Wellbeing Group and the International Wellbeing Index” (paper presented at Fifth Conference of the International Society for Quality-of-Life Studies, Frankfurt, Germany, July, 2003).

30 future security; each domain representing the first level of deconstruction of the global question: “How satisfied are you with your life as a whole?” In 2006 they added spirituality-religion as an additional domain, but in 2013, the 5th edition of their Index, decided to make it an optional domain, citing construct invalidity, and that the item makes no unique contribution in the Australian context. A parallel form of the PWI (PWI-ID) has been developed for use with people who have an intellectual disability.75

Given this contemporary emphasis on the importance of QOL measures, a major challenge is found in the implementation of practices that reflect QOL principles. According to Brown et al the primary challenge is to explore and demonstrate the social validity and positive impact it has on the lives of persons with intellectual disability and their families.76 It is to be hoped that this current research will contribute to the literature of QOL, especially as it relates to the dimension of spirituality. If QOL supports and emphasis on person-centred planning are paramount in human services, it is lamentable that this dimension is marginalized.

1.5.2 QOL, loneliness and friendship

In my professional and personal experience, issues of friendship, lack of community and loneliness are frequently raised as significant matters of concern among people with disabilities, families and carers. Concomitant with friendship is the experience of loneliness. This section, in discussing the experience of loneliness, lays the foundation for the discussion in Chapter 3 focussing on the relationship of friendship and spirituality for adults with intellectual disability.

Using an ‘iceberg’ image, leading USA researcher on loneliness, John Cacioppo, comments on the vast numbers of people now participating in society with little or no meaningful connection:

Civic engagement is the chunk of ice we see floating above the surface. Below the waterline lurks the much deeper issue of individual feelings of isolation. If civic engagement is to contribute substantially to assuaging the problem of loneliness, then it cannot be something merely akin to

75 http://www.acqol.com.au/iwbg/wellbeing-index/pwi-id-english.pdf accessed 23 August, 2016. 76 Brown, R.I., “Quality of Life”, 5.

31 networking at a trade show. What individuals need is meaningful connection, not superficial glad handling.77

William Waldron critiques the disability rights emphasis on self-determination which he does not alleviate people’s loneliness because “people with learning disabilities now live independently or go to work daily does not mean that they have friends or that they are not lonely.78

Richard Amado conjectures that loneliness might be contributing to the health problems, moods and behavior of people with intellectual disability, and that it is rare for program planners to evaluate the size, scope, or benefits of people’s social networks. Amado cites positive examples of changes in behaviour and health as a result of establishing friendships and connections with typical community members.79

Keith McVilly et al explored the experience of loneliness in a purposive cohort of 51 adults with intellectual disability. The aim of the study was to provide insight and guidance for family members and service providers to support people towards developing meaningful and rewarding relationships. Where discrepancies between people’s expectations and their experiences emerged, they reported loneliness. Those who were ‘most lonely’ expressed a longing for a social network:

The ‘most lonely’ participants spoke of how difficult it was to make and keep relationships: “You worry you will lose them.” They suggested that “it’s hard to open up if they are shy” because I’m shy I don’t go up to people, I expect them to come to me” … ”it’s best when you are introduced to someone who might suit you … ”everything is hard just getting along with people.” 80

77 John T. Cacioppo and William Patrick, Loneliness: Human Nature and the Need for Social Connection (New York: WW Norton and Company, 2008), 15. 78 William Waldron, “‘I Came That They may have Life, and Have it Abundantly’: Reimagining Life- giving Responses to the Problem of Loneliness Among People With Learning Disabilities” (PhD diss., University of Aberdeen, 2012), 102. 79 Richard S. Amado, R.S., “Loneliness: Effects and Implications,” in Angela Novak Amado, ed. Friendships and Community Connections between People with and without Developmental Disabilities (Baltimore: Paul Brookes Publishing, 1993), 67-84. 80 Keith R. McVilly “et al.” “‘I Get by With a Little Help from my Friends’: Adults with Intellectual Disability Discuss Loneliness,” Journal of Applied Research in Intellectual Disabilities 19, (2006): 191-203.

32 McVilly et al, reporting on the final phase of a larger study investigating friendship experiences and aspirations of adults with intellectual disability, found that the people interviewed typically had few if any significant social connections outside paid carers or members of their immediate family. A poignant finding was that the:

… response of members of the expert group, consistent with findings based on the individual interviews, emphasized that people with intellectual disabilities consider issues pertaining to friendship to be among the most important concerns in their life.81

This vulnerability to loneliness has also been explored by Linda Gilmore and Monica Cuskelly. They highlight the relative scarcity of research focused explicitly on loneliness and intellectual disability:

The available evidence suggests that up to half of persons with intellectual disability are chronically lonely, compared with around 15– 30% of people in the general population. The cognitive, physical, and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness.82

In one of the most recent Australian studies of people in supported living arrangements, with a particular focus on six Case Studies, Christine Bigby et al noted:

Our study identified real shortcomings in the type of support available to people in supported living arrangements that meant most had a mediocre rather than a good quality of life. Of most concern was their low level of physical well-being, opportunities for personal development, loneliness and absence of close friendships. 83

81 Keith R. McVilly “et al.” “Self-advocates Have the Last Say on Friendship,” Disability & Society 21, no. 7 (December, 2006): 693-708. 82 Linda Gilmore and Monica Cuskelly, “Vulnerability to Loneliness in People with Intellectual Disability: An Explanatory Model,” Journal of Policy and Practice in Intellectual Disabilities 11 (3) September 2014, p 192 of 192-199. 83 Christine Bigby and Emma Bould and Julie Beadle-Brown, “‘Not as Connected With People as They Want to be’ - Optimising Outcomes for People With Intellectual Disability in Supported Living Arrangements,” (Living with Disability Research Centre, La Trobe University, 2015), 79. http://www.amida.org.au/wp- content/uploads/2014/01/LivingwithDisabilityResearchSupportinginclusionofpeoplewithcognitivedi sabilities.pdf, accessed 9 October, 2018.

33 Loneliness and paucity of friendships for people with intellectual disability has been an abiding interest and concern of mine for many years.84 The writings cited above suggested that friendship could be an important factor when the interviewees in this research project talk about their experience of spirituality.

If people are very lonely and wish to make friends, are faith communities sufficiently aware of this? How can they best respond to expressed needs?

Lorna Hallahan, in exploring the concept of communio, poses the question: “How do relationships become transformational for all of us?” Communio is defined as: ‘loving, moral journeying’, with the emphasis on community as verb rather than noun. She explores the qualities of people who can be mobilized to bridge differences, and writes of the work of embrace:

We are inviting people into the lives of stigmatized people who are considered burdensome, disturbing, frightening, incapable of mutuality, demanding, or just plain unworthy and less than human. Many people with impairments are seen as the irremediably troubling other. We know that just being in a place or hoping for a friend to emerge does not overcome deeply ingrained practices of exclusion. So the question remains, is there any way into people’s hearts?85

These words of Hallahan go to the heart of the matter for me and motivate this research. Relationally all people need to be connected to others be it within family, work or constellations of community and friendship circles. I believe that to feel loved and to offer love in a range of ways is the bedrock of a quality life. But is this the experience of people with intellectual disability?

For faith communities, might friendship (theologically and spiritually defined and practically articulated) be the means and expression of communio with people marginalized by disability? Might friendship be a paradigm of intentional mission or action waiting to be more explicitly encouraged and embodied within faith

84 When employed in the 1980s as Leisure and Life-Style Advocate for People with Disabilities within the Victorian Department of Sport and Recreation, I frequently commented that the Government would do well to create a Department of Friendship. 85 Lorna Hallahan, “Believe That a Farther Shore Is Reachable from Here: Mapping Community as Moral Loving Journeying,” in Voices in Disability and Spirituality from the Land Down Under, eds. Christopher Newell and Andy Calder (New York: Haworth Pastoral Press, 2004), 33-44.

34 communities? It is Gaventa’s hope that the rich traditions of understanding friendship in the context of gift and call can be recovered within Christian communities of faith, especially for those with intellectual disability. Gaventa sees ‘gift’ in the sense of the presence and positive attributes that people with intellectual disability embody, and ‘call’ in the sense of professionals and caregivers being called upon to reframe their vocation as friends and enablers of friendships.86

In summary, the discussion to date has raised three clusters of issues and concerns which motivate this research:

1. Is spirituality an important dimension in the lives of people with intellectual disability, and if so what do they say about the meaning they ascribe to it? How do adults with intellectual disability define spirituality? Is there something distinctive to be learned by asking people directly about the meaning and importance they ascribe to spirituality? Is the issue of friendship likely to be prominent in their responses?

2. Currently places of low participation by adults with intellectual disability how might faith communities respond to this? Are faith communities responding in a way that enhances the aspirations of adults with intellectual disability? Might friendship be a key ingredient in enhancing such participation?

3. With increased numbers of people with disability living in community settings, what consideration, if any, has been given by the Victorian State government, and now the National Disability Insurance Scheme (NDIS), to those in their care regarding spiritual needs?87

In turn these issues and concerns give rise to the research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

86 William C. Gaventa, Disability and Spirituality: Recovering Wholeness, (Waco: Texas: Baylor University Press, 2018), 222-230. 87 Of the three tiers of Australian government (federal, state and local), state governments have responsibility for provision and accreditation of residential services.

35 (ii) How can the disability services sector respond? What action is needed?

To explore these questions the research was undertaken in collaboration with the major Melbourne-based, self-advocacy network called Victorian Advocacy League for Individuals with Disability Inc. (VALID), whose members self-identify with cognitive or intellectual disability. Following discussions with some members and staff, this organization, which acts from a rights-based approach, agreed to the research collaboration on the basis that the expression of people’s spirituality is a fundamental right.

VALID organises a major annual Conference called ‘Having Your Say’ which attracts up to 1000 attendees across a 3-day period. Delegates include people with intellectual disability, policy makers and people from a range of support networks. The research process began with a preliminary presentation about spirituality at this conference and as trust developed a co-researcher framework developed with introductions to potential interviewees. This research relationship and associated research design will be described in detail in Chapter 6.

1.6 Researcher’s background and influences

1.6.1 Diaconate and Clinical Pastoral Education

As a minister in the Uniting Church in Australia,88 I was ordained in 1995 to its diaconate. The Uniting Church’s understanding of the diaconate is based upon Christ’s actions of diakonia in which the emphasis is placed upon prioritising people in society who are unjustly treated or who are at the mercy of structures and policies which exclude them. Dorothy McRae-McMahon writes:

All of us have the sacred task of bridging the now significant gap between the church and the community, but I believe that diakonia has a particular task to help us to do so. Because deacons are primarily located in the community, they are called to listen, to feel, and to interpret

88 This Protestant Church was formed in 1977 as a result of union between Methodist, Congregational and Presbyterian Churches.

36 for the church the path towards reconciliation, or at least mutual respect.89

Such a bridging role is integral to my ministry identity and is also reflected in this research. As I listen to, and in turn interpret the responses of the 14 interviewees, the understandings and findings provide the content for advocacy to both faith communities and government. Such advocacy also aims at illuminating the importance of cooperation between these two entities (faith and state) in order for expressed desires of the interviewees to be taken seriously.

Prior to I was employed in a range of disability-related leisure and recreation contexts in Victoria (community-based direct care, local and state government policy, community advocacy networks), all principally supporting the integration of people with disability into mainstream services. Within the Uniting Church, in the role of ‘Disability Inclusion Advocate’, the practice of ministry has had a two-fold emphasis, internal and external to the Uniting Church, thus reflecting this bridging role.

Internally, the development of successive Disability Action Plans (DAP), 2000 – 2003 and 2016 – 2018, has challenged the Uniting Church to be more responsive and inclusive of people with disability in regard to physical access, liturgy, theology and social connectivity. Externally, advocacy occurs both in activating responses and recognition of the importance of spirituality for people with disabilities with other communities across the faith spectrum, and also in relation to government policy. This has included ongoing advocacy for its inclusion in successive Victorian State Disability Plans and the National Disability Insurance Scheme (NDIS).

People with disabilities, families and some staff (community residential and day program settings) have expressed frustration that interest in and opportunities to embrace their spirituality are overlooked. Endeavours to address this by leadership of both government and faith communities have been frustratingly slow. This added urgency and impetus to research being undertaken that complemented these advocacy activities and had the endorsement of the Uniting Church as my employer.

89 Dorothy McRae-McMahon, ‘Deacons and the Mission of the Church’. Paper presented at a seminar for Deacon’s Education, Uniting Church in Australia. Mt. Martha, Victoria. May 1994.

37 It is hoped the research will contribute to enhanced recognition and importance of spirituality for people with disability.

I also have a long-standing interest in the practice of pastoral care. Within the Uniting Church, two Melbourne-based appointments as a chaplain gave expression to this: firstly to people experiencing mental health issues in a community-based support agency of the Uniting Church - Prahran Mission; and secondly within a major private metropolitan hospital providing pastoral care with patients experiencing rehabilitation - Epworth Healthcare. Research conducted there included perceptions of road trauma survivors to the provision of pastoral care.90 Concurrent with this has been accreditation as a Clinical Pastoral Supervisor within the Clinical Pastoral Education (CPE) movement. With its emphasis on the development of empathic listening skills, as noted in the research design, this has provided confidence and aptitude for the interviews with 14 people with intellectual disability.

The significance of CPE for this research unfolded whilst completing ordinand studies in 1994. In reading David Schwartz’s book ‘Crossing the River: Creating a Conceptual Revolution in Community and Disability’,91 the metaphor of building bridges with people with disabilities who are alienated from the mainstream of community life was used to describe the imperative of developing meaningful relationships with and for people with disabilities.

1.6.2 Role of bridge-builder

Whilst extensive systems of community services were being created in response to deinstitutionalisation, Schwartz contends that the human ecology is imbalanced: reliance on professionalism and advocacy is necessary, yes, but not sufficient; policy reform and technological advances are necessary, yes, but not sufficient; our being helpers and healers is necessary, yes but not sufficient. Schwartz refers to this realm of professionalism, advocacy, policy reform and technology, all striving for structural reform, as the “in”. On the other hand, Schwartz asserts that we need to look at

90 Andrew Badcoe and Andy Calder and Louise Harms, “Broken Bodies, Healing Spirits: Road Trauma Survivor's perceptions of Pastoral Care During Inpatient Orthopaedic Rehabilitation,” Journal of Disability and Rehabilitation (November 2010): 1358-1366. 91 David B. Schwartz, Crossing the River: Creating a Conceptual Revolution in Community and Disability (Northampton, MA: Brookline Books, 1992).

38 ourselves and people with intellectual disability in a new perspective, as people who make positive, indeed, essential – contributions to all of us; this realm he calls the “of”.

My sense of Schwartz’s “in” is that it refers to all the necessary preconditions of legislation, supports and resources that are needed, whilst the “of” refers to communal life, of belonging and intimacy, having friends and making positive contributions individually and collectively. Whilst the two realms are not mutually exclusive, they provide a helpful dichotomy in bridge-building and will assist discussion in Chapters 9 and 10.

Schwartz also referred to exponents of theology and disability who were active in advocating for faith communities to be more welcoming and embracing of people with intellectual disability; one of those exponents was Bill Gaventa.92

Correspondence with Bill led to a crossing of the ocean with my young family for a mentorship under him in a Clinical Pastoral Education (CPE) program in New Jersey, USA. The chaplaincy placement was at Hunterdon Developmental Centre, a large facility of 500 people who had been gathered from all parts of the country and transported there for the remainder of their lives. This reminded me of a chapter in Australia’s history in the 1780s when convicts were exiled from England to Australia: out of mind and out of sight.

In addition to the traditional and expected roles of a chaplain, Gaventa had been nurturing relationships with the management of the Developmental Centre and with leaders of surrounding faith communities, with the goal that the Hunterdon residents would participate in, and become members of, those communities. There was the hope that friendships would develop in which differences of culture and history were transcended. It was my task to be an active facilitator of this process and play a practical bridge-building role. In the process I was learning to traverse a new river that flowed between the realms of state and faith; between the realms of “in” and “of” as described by Schwartz. As a practical theologian, questions then and since have included: “Is God only to be found in the realm of faith?” “What role does the state

92 Schwartz, Crossing the River, x-xi.

39 have in recognising and encouraging the spirituality of people with intellectual disability?”

To further extend the metaphor of being a bridge-builder this research will also reflect this approach. I contend that the realms of “in” and “of” need to establish meaningful dialogue as a precondition for inclusion and belonging. In representing the interests of people with intellectual disability, the disability rights movement is sometimes characterised as lacking heart, whilst faith communities are sometimes characterised as being too liturgically rigid and too theologically rational for people with intellectual disability.

Disability advocacy groups, community support services and government policy makers, active in the socio-political arena, could benefit greatly from recognising the important place that faith and spirituality have for many people they represent. The importance of not being discriminated against because of religion is captured within the UN Convention on the Rights of People with Disabilities 2006:

The States Parties to the present Convention, concerned about the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status, have agreed the purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.93

Why is it that this dimension of people’s lives is so downplayed and ignored to the detriment of potential community connectedness and friendship development?

On the other hand, faith communities need to be encouraged and challenged in their responses, and whilst we are witnessing greater receptiveness to the needs of people with intellectual disability and their families, the reality is that people are significantly under-represented in faith communities. Jennie Weiss Block puts this well:

The theological community must learn about the philosophy that drives the disability movement and, then, be willing to critique the Christian

93 Preamble item p. and first paragraph of Article 1 – Purpose.

40 tradition in the light of that philosophy. In like fashion, the disability community must be willing to search the Christian tradition for ways that can give meaning to the experience of being disabled.94

1.7 Theological influences on the research

There are two arenas of theological interest which will come to bear when discussing the interviewee’s narratives and how faith communities and the wider disability support system can respond. Briefly introduced here, and discussed in greater depth in Chapters 9 and 10, the first is the relationship of Jesus and friendship, and the second is the prophetic schema of Walter Brueggemann, as outlined in his book ‘The Prophetic Imagination’.95

1.7.1 Friendship and Jesus

In the New Testament Jesus is referred to as a ‘friend’ on two occasions; these two places are most important to the message of Jesus. In Luke’s gospel we read:

The Son of Man has come eating and drinking, and you say, ‘Look a glutton and a drunkard, a friend of tax collectors and sinners!’ (Luke 7: 34 NRSV).

In John’s gospel the relationship of servant and friend is described:

No one has greater love than this, to lay down one’s life for one’s friends. You are my friends if you do what I command you. I do not call you servants any longer, because the servant does not know what the master is doing; but I have called you friends. (John 15: 13 - 15a NRSV).

Here the of one’s life is the highest form of love, which manifests itself as friendship. The switch from being servants to friends is most significant for the relationship between Jesus and the disciples. Friendship comes to be understood in

94 Jennie Weiss Block, Copious Hosting: A Theology of Access for People with Disabilities (New York: Continuum, 2002), 20.

95 Walter Brueggemann, The Prophetic Imagination (Minneapolis: Fortress Press, 2001).

41 the context of both ‘gift’ and ‘call’.96 In relation to this research, Hans Reinders sums up this sense of gift and call:

As human beings, our vocation is friendship with God, but usually our reflective self gets in the way of trusting God. Being with an intellectually disabled person teaches us precisely this painful lesson. It paves the way for our friendship both with them and with God by teaching us that we can only give friendship after we have learned to receive it.97

In shifting the emphasis from service to friendship, was Jesus pointing to a different way of being in relationship with people with intellectual disability? If so, how might this research illuminate such a profound change of relationship?

1.7.2 Exile: Brueggemann’s ‘Prophetic Imagination’ schema

The second arena of theological interest derives from the prophetic tradition. Walter Brueggemann writes:

Theological cause without social political reality is only of interest to a professional religionist, and social political reality without theological cause need not concern us here. But it is being driven by the one to the other that requires us to speak of and wonder about the call to be prophetic.98

Brueggemann’s framework, based on the interface of ‘prophetic’ and ‘imagination’, will be outlined and elucidated in more detail in Chapter 9 but it is important at this point to consider its application to the situation of people with intellectual disability. By engaging with the Exodus story and the Hebrews’ escape from slavery to freedom, the vital memory that brought hope for the people throughout their history, Brueggemann hypothesises that:

… the task of prophetic ministry is to nurture, nourish and evoke a consciousness and perception alternative to the consciousness and perception of the dominant culture around us.99

96 Gaventa, Spirituality and Disability, 222-230. 97 Hans Reinders, Receiving the Gift of Friendship, Profound Disability, Theological Anthropology, and Ethics (Grand Rapids: W.E. Eerdmans Publishing, 2008), 225. 98 Walter Brueggemann, The Prophetic Imagination (Minneapolis: Fortress Press, 2001), 6. 99 Brueggemann, The Prophetic Imagination, 3.

42 Moses intended the dismantling of the oppressive empire of Pharaoh, the royal consciousness. On the other hand, he intended the formation of a new community focussed on the religion of God’s freedom and the politics of justice and compassion.

Brueggemann, also a scholar of the psalter, sees within the psalms three orientations or seasons of life, reminding us that the root expression of Israel’s praise is found in the liberation of slaves from Egypt (Exodus). This vital memory brought hope for the people throughout their history.

Brueggemann classifies the psalms with the categories of orientation, disorientation and new orientation. Psalms of orientation celebrate security and order in the world; psalms of disorientation (laments) pour forth when the world falls apart and doubt and despair prevail; psalms of new orientation express thanksgiving, and whilst remembering the doubts, focuses on a new depth of life found in the struggle.100

The new orientation speaks of boldness about a new gift from God, a fresh intrusion that makes all things new and perhaps even offers a rationale and purpose for research:

Human life consists in turns of surprise when we are overwhelmed with the new gifts of God, when joy breaks through the despair. Where there has been only darkness, there is light.101

1.8 Conclusion

Is there a new world, a new orientation, to be had for people with intellectual disability who so often find themselves in places of exile? What might God’s will be for adults with intellectual disability? How does that mesh, or does it, with what people with intellectual disability will for their own lives? These questions are critical to this research as it seeks to understand more about the spiritual dimensions and aspirations of adults with intellectual disability and the responses by faith communities and government in addressing them.

100 Walter Brueggemann, Spirituality of the Psalms (Minneapolis: Fortress Press, 2002), 9-15. 101 Brueggemann, Spirituality of the Psalms, 8-9.

43 In conclusion, as the phenomenon of spirituality of adults with intellectual disability is explored though the above model and methods, the movement from “What is?” to “What can be?” will be a guiding mantra. In theological terms, for people who have historically lived outside the mainstream of community life, in a place of exile, and who now physically live within the mainstream, is there a new song to be sung in a strange land? Is there a hopeful re-imagination of how life might be lived more fully in a land no longer strange?

This movement from “What is?” to “What can be?” will necessarily engage many components, or horizons, including the meaning people make of their experience in relation to literature in the spirituality-disability-friendship fields. Analysis and interpretation of the interviews will be influenced by theological reflections leading to recommendations for improvements in the quality of people’s lives.

44 Chapter 2: Spirituality and Disability

2.1 Introduction

This Chapter offers provisional and working understanding of ‘spirituality’ and its relationship to religion, providing a basis for discussion of the core dimensions of the relationship between spirituality and disability. This foundational dialogue will broadly review literature pertaining specifically to spirituality and disability, particularly in the past 50 years, and will include literature that addresses the concerns of people with intellectual disability.

Following this broad overview, images and themes identified in the literature related to spirituality and people with intellectual disability will be outlined, including themes of spirituality and friendship, which is the particular interest of this thesis. This was one of six themes which emerged from John Swinton’s 1990-2000 review of spirituality and intellectual disability literature.1

Reference will be made to a handful of studies undertaken since the turn of this century which have intentionally explored the lived experience and first-hand perspectives of people with intellectual disability, highlighting a spirituality which concluded that friendship either or both with God and other people, was the most important thing in their lives. For that reason, the hypothesis is that friendship will also emerge as a significant factor in this research, the sixth theme Spirituality and Friendship, demands significantly more attention and will be the focus of Chapter 3.

2.2 Spirituality: Working definitions and understandings

2.2.1 A provisional understanding

Unsurprisingly, there is no one universally-accepted definition for ‘spirituality’. Derived from the word ‘spirit’, a life force that is immaterial and mysterious, which encapsulates awe and wonder and is unseen, it can be the difference between that which is alive and that which is not. Spirit cannot be fully captured by words, but that has not stopped

1 Detailed in 2.4.2 the other five are (i) Education, Consciousness Raising and Enabling; (ii) Spiritual Care and Social Justice; (iii) Meaning and the Interpretation of Experience; (iv) Religious Communities and social support; and (v) Transforming Stories.

45 many from attempting to do so. Within the scope of this study and its focus on dignity for those who have been historically marginalised, it is a bedrock conviction of this author, coming from within Christian theology, that all people in their common humanness, have been made in the ‘image of God’ and are more than a physical entity of miraculously interactive cells. John Macquarrie extends this foundational spirituality:

That is why we can never degrade a human being to a mere thing-hood … even when all natural possibilities have been reduced to the lowest conceivable level, when sight and thought and movement and decision are all in abeyance, for the Christian, one has still not come to the point when that person can be written off as nothing or merely past, for the Christian believes in resurrection, and in the widest sense, that simply means that God can still bring forth something new.2

The Oxford Dictionary defines spiritual as: (i) of or concerning the spirit as opposed to matter; (ii) concerned with sacred or religious things; holy; divine; inspired (the spiritual life; spiritual songs); (iii) (of the mind etc.) refined, sensitive; not concerned with the material; (iv) (of a relationship etc.) concerned with the or spirit etc., not with external reality (spiritual home).3

This broad, popularly accessible definition also highlights the dimension of human beings that lies beyond explanations provided by biology and genetics alone. The spiritual is that which seeks connection with the transcendent and explores relationships with other people who are seeking sustenance and inspiration for their life. An early reflection in this sector proposed that in the joys and vicissitudes of life, solace and flourishing may be found in the companionship of others with similar hopes and needs, and where the spirit is “that which enlivens, empowers and motivates.”4 This suggests that the spirit energises human beings and as such inspires the human quest for meaning, value, hope, purpose and transcendence. The literature behind this research addresses the person holistically, and assumes that the relationship between

2 John Macquarrie, “Theological Reflection on Disability,” in Religion and Disability – Essays in Scripture, Theology and Ethics, ed. Marilyn Bishop (Kansas City: Sheed and Ward, 2005), 29. 3 Patrick Hanks, ed., The Oxford English Reference Dictionary (Oxford: Oxford University Press, 2001), 1397. 4 Peter Nolan and Paul Crawford, “Towards a Rhetoric of Spirituality in Mental Health Care,” Journal of Advanced Nursing 26, (1997): 290.

46 spirituality and human beings begins with the premise that ‘a spirit’ exists within each person:

Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions and practices.5

This emphasis on multiple relational connections as well as beliefs, values, traditions and practices, indicates that many people express their spirituality within a particular religious tradition which may also have a focus on a specific deity.

2.2.2 Relationship between spirituality and religion

Traditionally spirituality has been aligned with religion. People find acceptance and fulfilment within a particular religion and its practices of liturgy, , prayer, care, sacred texts and teaching. Religion continues to play a significant role in the western world, albeit diminished into this millennium, and whilst there may be less formal adherence to specific forms of institutional religion, it is not the case that people are less spiritual; people are now engaging their spirituality through modes and expressions that are much different to traditional understandings.6 For the purposes of this research and the exploration of the spiritual lives of people with intellectual disability we note Swinton and Powrie’s summary of a shift that is also reflected in Australia:

This migration from the strictly religious into much more diverse forms has led to a change in the meaning of spirituality. It has opened up traditional understandings to include dimensions that may appear functionally similar to the traditional religious quest but are in fact significantly different. These new forms do not necessarily have a formal religious framework. They are located within such things as individual belief systems and personal relational networks. Spirituality is not

5 Christina Puchalski “et al.” “Spiritual Dimension of Whole Person Care: Reaching National and International Consensus,” Journal of Palliative Medicine 17 no. 6, (June, 2014): 646. 6 David Hay and Kate Hunt, “Understanding the Spirituality of People who Don’t go to Church: A Report on the Findings of the Adults’ Spirituality Project at the University of Nottingham,” (August, 2000), 17-20. http://www.churchofscotland.org.uk/__data/assets/pdf_file/0006/3678/understanding_spirituality_ report.pdf accessed 2 October, 2016.

47 viewed simply as a divine gift or a consequence of sustained interaction with God or a religious community. It is seen more as a general human need which reveals itself in a search for meaning, purpose, value, hope and for some, God.7

This shift in spirituality’s breadth and flexibility will be reflected in the data gathered and its subsequent interpretation. The open-ended questions will explore each person’s perceptions of spirituality within parameters of meaning, purpose, value and hope.

Seeking to define religion and spirituality within an Australian context, sociologist Gary Bouma acknowledges the transformation of the Australian religious landscape. Following 55,000 years of religious, cultural and linguistic diversity among the Indigenous peoples, from the early 19th century this land has been dominated by a form of British . Owing to a global movement of peoples and ideas, there is now a plethora of religious and spiritual expressions, within a secular society and culture.

This research will wrestle with the meaning of spirituality for those who normally have been excluded from any conversations of meaning or discovery of meaning. Two Australian writers, David Tacey and Gary Bouma provide a contextual framework. A contemporary definition of religion and spirituality is likely to take a more experiential approach, in which people ‘know’ the spiritual and religious through encounter or experience. For Bouma, this ‘knowing’ may be found in:

… full-blown systems of theology, backed up by organisational forms to inculcate, celebrate and apply the beliefs, to small groups of people meeting to meditate, to feel the power of life in nature, to experience awe and wonder at the mysteries of the outer and inner bounds of the universe.8

Tacey also addresses this ‘knowing’ in the Australian context while lamenting the separation of the religious and the spiritual, an important theme for this study:

7 John Swinton and Elaine Powrie, “Why are we Here? Meeting the Spiritual Needs of People with Learning Disabilities,” (London: Foundation for People with Learning Disabilities, 2004), 15. 8 Gary Bouma, “Defining Religion and Spirituality,” in The Encyclopedia of Religion in Australia, ed., James Jupp (Cambridge: Cambridge University Press, 2009), 23.

48 While religion meets the needs of the soul at one level there’s a level at which it does not meet the need of the soul; a lot of people don’t want to just have God talk … they want God experiences. God is what the east gives through its interiority, , contemplation and spiritual exercises. The experiential religion of religion is vitally important; that’s what we call spirituality … The irony of the situation is that we need both of them. Spirituality needs to become religious because it needs history, tradition, wisdom and community: religion needs to become more spiritual because people require more than sermons, creeds, and liturgies. By bringing them together we will then have what we need. But at the moment they are moving apart like separating continents on the ocean, like continental drift.9

For Bouma, there is a “sense that people ‘know’ the spiritual and religious when they encounter or experience them, but capturing these phenomena has eluded scholars,” but his challenge to those within the Church community can also be addressed to those who would design policy and practice in community settings: “Contemporary writing on religion and spirituality argues that they deal with those aspects of life beyond the here and now, beyond or more foundational than the mundane.”10

Tacey also offers a telling statement for this research’s quest for the meaning exiled people with intellectual disability ascribe to their experience and understanding of spirituality:

Whatever its cause, social alienation is a reality and keenly experienced today. To fall out of society and into the dark unknown can be extremely disorienting and unpleasant … But the fallout of social identification can also be a felix culpa, a fortunate fall, if the individual is able to find his or her way to the underground stream that brings renewal and healing … Thus, the fortunate fall can lead to reversals, conversions and prophetic commitment to a new sense of destiny or purpose. Down and out one minute, the individual can suddenly find him or herself hurled back in to life and serving a greater will with considerable verve and gusto.11

This life-based dimension of Australian spirituality is also reflected in the concept of desert. Uncritically informed by dominant understandings of disability in terms of deficit and charity, religious attitudes and practices often contribute to a spiritual desert, or

9 David J. Tacey, “Contours of Australian Spirituality,” (paper presented at Exclusion and Embrace: Disability, Justice and Spirituality Conference, Melbourne, Australia, August 21-23, 2016). 10 Bouma, “Defining Religion and Spirituality,” 23. 11 David J.Tacey, The Spirituality Revolution (Sydney: Harper Collins, 2003), 54.

49 exilic experience, for people with disability. For Christopher Newell and Andy Calder, the desert, and indeed the experience of Australians with disability is actually not devoid of life; it is a desert teeming with life. However it needs courage and perspective to realize it. They assert that Australian faith communities need to purposefully embrace people with disability in direct relationship for spirituality to mutually flourish and in “Christian terms, this requires significant doing of theology: re-thinking who belongs to the household of God and who is routinely consigned to the desert or to the crashing waves of the surf.”12

It is the intention of this research to unearth and bring to light those understandings, insights, perceptions and intuitions that have often been hidden, or ignored, in the lives of adults with intellectual disability. It is hoped that their lives, and those of faith communities, will be enriched by renewed understandings of spirituality, perhaps through the lens of reframed and reinterpreted themes of friendship.

In concluding this brief, contextualised introduction to ‘spirituality’ and ‘religion’, and before reviewing the relevant literature in the field of disability, it is important to note that until the turn of the century, global recognition of their importance for people with disability, within the arenas of social policy and provision of state-funded services, has generally been absent. That has certainly been the case in Australia as outlined in Chapter 1. Some signs of change are however being witnessed.

2.3 Spirituality and disability

2.3.1 Core dimensions of understanding

One indicator of such change was the inclusion of a section devoted to ‘Religion’ in the 2005 edition of the Encyclopaedia of Disability. I make two observations: (i) scholars and practitioners can re-examine religious texts and traditions via social, cultural and rights understandings of disability, helping to shape new appreciation of disability in tradition; (ii) disability stories/experience can shape belief and generate revised practice within a given religious community, often in the name of inclusion or

12 Christopher Newell and Andy Calder, introduction to Voices in Disability and Spirituality from the Land Down Under: Outback to Outfront, by Christopher Newell and Andy Calder (New York: Haworth Pastoral Press, 2004), 2.

50 acceptance. Gaventa and Newell name four core religious/dimensions which identify the ways in which religions and faith traditions understand and relate to disability.

1. What is the belief about the source of disability (i.e. why it happened) and the role of God or the divine?

2. How does that understanding of its source affect the understanding and identity of a person with disability?

3. What, then, is the role and purpose of the person with disability in society? (“What am I called to do?”)

4. What is the role of the community of faith – that is, what are others called to do, out of their faith, towards people with disabilities?13

These four dimensions are integral to the focus of this research (especially through the ‘data gathering, analysis, discussion, findings’ stages) in which the stories/experience of people with intellectual disability inform and offer the challenge of a dual Christian response: (i) an embrace of friendship by congregations; (ii) advocating recognition of spirituality’s importance in public policy.

2.3.2 A foundational dialogue

Across the spectrum of literature on disability and spirituality, for some people, the spiritual dimension of disability has been described as a ‘grand project and everyday task’ of coming to terms with finite losses and limitations as well as the infinite possibilities for a meaningful life, and for a relationship with the world and a higher power.14 For others, the experience of disability may be an opportunity for spiritual growth and meaning-making – a catalyst for profound individual transformation and re-connection with the sacred as a central organising value in life.15 However, for some people the onset or ongoing experience of disability may be a catalyst for profound

13 Bill Gaventa and Christopher Newell, in Encyclopedia of Disability, ed. Gary L. Albrecht (Sage Publications, 2005): 1374-1381. 14 Jennifer Fitzgerald, “Reclaiming the Whole Self: Self, Spirit and Society,” Disability and Rehabilitation 19, (1997): 407-413. 15 Ken I. Pargament, “Stress and the Sacred: The Spiritual Dimensions of Coping,” Spirituality and Health 1, no.1 (1998): 222-237.

51 spiritual distress or discontent, and provoke various forms of spiritual struggle.16 This may include questioning of spiritual beliefs or one’s relationship with God or deity, a deep crisis of faith, disillusionment with a previously supportive faith community, or disinterest in previous religious activities.17

For either situation, the relationship between spirituality and disability is an important one, and some people with disability seek involvement within a faith community to live out and explore the themes described above. Others have experienced a problematic relationship with faith communities and positive associations have not developed. For some people, it is contended that the expression of spirituality may not be defined in terms of participation in a faith community, and this research project will explore the reality of the experiences, understandings and preferences of some adults with intellectual disability. This will in turn hopefully inform dialogue and conversations within the disability advocacy sector and with people in public policy roles who have responsibility for the holistic care of people with intellectual disability.

Thirty years ago, in 1998, Deborah Selway and Adrian Ashman drew together for the first time a body of literature from a range of sources which illustrated the diversity of research in the field of disability, religion and health. They presented an historical and cross-cultural overview to highlight the role of religious organisations in the establishment of health and welfare services for persons with a disability. They found that references to disability in religion and health literature up to that point commonly related to the elderly.18 Of all studies in health and religion, only one dealt specifically with people with disability. Loretta do Rozario undertook a phenomenological study of 35 adults who had a congenital or acquired chronic physical illness or disability. She found that many underwent ‘a journey of inner transformation and growth … to

16 George Fitchett and G. Murphy, “Religious Struggle: Prevalence, Correlates and Mental Health Risks in Diabetic, Congestive Heart Failure, and Oncology Patients,” International Journal of Psychiatry in Medicine 34, no.2 (2004):179-196. 17 R.W.Cressey and M.Winbolt-Lewis, “The Forgotten Heart of Care: A Model of Spiritual are in the National Health Service,” Accident and Emergency Nursing 8, (2000): 170-177. 18 Deborah Selway and Adrian F. Ashman, “Disability, Religion and Health: A Literature Review in Search of the Spiritual Dimensions of Disability,” Disability & Society 13, no. 3 (1998): 429-439.

52 experience and integrate a deeper meaning, sense of self, wholeness, and spirituality within their lives’.19 This insight helps to inspire the current research.

Selway and Ashman concluded that transpersonal aspects of religion and health had rarely been addressed by researchers in the field of disability and speculated as to why there was such a dearth of information on the spiritual lives of persons with a disability.

… are researchers reluctant to explore the spiritual dimensions of disability? Are persons with a disability reluctant to explore the spiritual dimensions of disability? Or are there too many other fundamental issues still to be addressed for persons with a disability (i.e. adequate care, accommodation and community access facilities) before the topic of spirituality can assume priority?20

Whilst Selway and Ashman’s literature search predominantly focuses on the experience of people with physical disability in medical and rehabilitation settings, studies are even scarcer in relation to the expressed meanings people with intellectual disability ascribe to notions of spirituality or religion or faith.

This link between spirituality, health and well-being which Selway and Ashman’s search highlights, provides early evidence that spirituality is an integral component of both mental and physical health. Whilst the evidence is not unambiguous, and the measurement and research of spirituality is complex, Harold Koenig et al in the seminal ‘Handbook of Religion and Health’, provide significant evidence of the correlation between physical and mental health and a person’s spiritual life. Since publication of their first edition in 2001, research in the field of religion and health has grown. The research questions no longer ask if there is a relationship between religion and health, but rather under what conditions does religious participation affect health. No longer is religious involvement debated as to whether it is good or bad for health, as if expecting an either/or response. Instead we study the conditions under which religion promotes health and the conditions under which it harms well-being.21 In

19 Loretta Do Rozario, “The Spiritual Nature of Health and Well-being of People With Chronic Disabilities and Illness: A Paradigm of Wholeness and Reconstitution” (PhD diss., University of Queensland, Brisbane, 1994). 20 Selway and Ashman, “Disability, Religion and Health,” 437. 21 Harold G. Koenig and Dana E. King and Verna B. Carson, introduction to Handbook of Religion and Health (Oxford: Oxford University Press, 2012), xi.

53 Australia, and Victoria in particular, two key organisations, Spiritual Health Victoria (SHV), and Spiritual Care Australia (SCA) (Victorian chapter) have been giving expression to such study and advocating for the benefits of religion and spirituality for people’s well-being. SHV’s Foundational Statement declares that “when spiritual needs are recognised and responded to as an integral part of health care an essential contribution is made to the health and wellbeing of the community.”22

Research pertaining to disability, spirituality and health is clearly related to the literature relating to disability and spirituality broadly. A chronology of the literature provides an overview of trends and emphases over the past two centuries to the present. These trends and themes broadly parallel, and are influenced by, changing values and approaches within western society to the life needs and aspirations of people with disability. These trends mark the shift from custodial and paternalistic care to social inclusion and self-determination and from the medical model to a social- ecological model.

Following this broad overview, images and themes in the literature related to spirituality and people with intellectual disability will be outlined, inclusive of the themes of spirituality and friendship, a key focus of this thesis.

2.3.3 Historical overview of disability and spirituality literature

The literature relating to spirituality and disability, inclusive of intellectual disability, has an organising principle that follows a time-frame as follows:

(i) During the period (19th to mid-20th century) of congregate institutionalisation people known pejoratively as ‘imbeciles’, ‘idiots’ or ‘retardates’ were widely assumed to be ‘non-contributors’, ‘a-spiritual’ and beyond church ministrations. There were some exceptions as when sacramental and pastoral care was provided by visiting chaplains. Writings from this period are sparse.23

22 http://www.spiritualhealthvictoria.org.au/ and https://www.spiritualcareaustralia.org.au/accessed 29 January, 2018. 23 Sara Newman, “Disability and Life Writing: Reports From the Nineteenth-Century Asylum,” Journal of Literary and Cultural Disability Studies 5, no. 3 (2011): 261.

54 (ii) The next period covers the 1960s up to 1981, the historic International Year of Disabled Persons. Particularly in the United States, Europe and the United Kingdom there was an increasing awareness of, and growing number of reflective writings about the lives of people with disability. This included people with intellectual disability in the context of pastoral care, liturgy and participation in faith communities. In 1979 Geiko Müller- Fahrenholz edited a collection of writings which introduced a ‘partnership’ approach on the part of churches. This represented a move from the ‘ministry to’ concept towards an emerging emphasis of collaboration between ‘disabled’ and ‘able’.24 Emphasis on participation in the Body of Christ, emphasising people’s giftedness rather than deficit, is increasingly documented. In 1964 Jean Vanier founded the L’Arche movement where people with intellectual disability live an intentionally religious life in small group residential settings with ‘able-bodied’ support volunteers. Much has been written by Vanier and others about the spirituality of L’Arche and these will contribute to this thesis, particularly in relation to friendship.25 In the field of pastoral care and theological education Robert Perske, chaplain with the Kansas Neurological Institute in the 1960s, developed Clinical Pastoral Education (CPE) placements in different institutions for people with ‘mental retardation’.26 Wolf Wolfensberger suggests the exclusion of this hitherto overlooked and devalued population is antithetical to Christian community.27

(iii) As de-institutionalisation and social inclusion policies gained pace from the 1980s, Christian writings to the present day have been very heavily focused on the integration and inclusion of people with disability ‘into’

24 Geiko Müller-Fahrenholz, ed., Partners in Life: The Handicapped and the Church (Faith and Order Paper 89 (Geneva: World Council of Churches, 1979). 25 Michael Hryniuk, Theology, Disability, and Spiritual Transformation: Learning from the Communities of L’Arche (New York: Cambria Press, 2010). 26 Gaventa and Coulter have edited his writings in: “The Pastoral Voice of Robert Perske”, eds. William C. Gaventa and David L. Coulter, Journal of Religion, Disability and Health 7 (2003): nos. 1 and 2. 27 Wolfensberger is known for his seminal book Normalization, but as a theologian the two strands are inextricable. Gaventa and Coulter have captured his pioneering writings in: The Theological Voice of Wolf Wolfensberger, eds. William C. Gaventa and David L. Coulter, Journal of Religion, Disability and Health 4 (2001): nos. 2 and 3.

55 congregations.28 Themes related to spirituality and religion and disability theology within this period of literature include ethics,29 human rights,30 advocacy,31 anthropology, narrative, sacramental and liturgical participation,32 education and awareness of congregations and leadership,33 friendship,34 hospitality,35 vulnerability, healing, homiletics,36 and hermeneutics.37

During this period, whilst employed in a range of community organisations supporting families and people with disability, I was active in such social inclusion. When I was ordained in 1995 this transferred to faith contexts and the afore-mentioned literature became influential.

Reflecting this growing ecumenical body of literature, in 2003 the World Council of Churches (WCC) published the document A Church of All and for All prepared by EDAN (Ecumenical Disability Advocates Network), which argued for the inclusion of persons with disabilities in their respective churches and societies. With the publication of this document, and subsequent iterations, the WCC aligned itself with a broader global development toward a human rights approach to disability that had already been underway for some time.38

28 Carter, Including People with Disabilities in Faith Communities, 53-89. 29 Stanley Hauerwas, Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church (Indiana: University of Notre Dame Press), 1986. 30 Nancy L. Eiesland, The Disabled God: Toward a Liberatory Theology of Disability (Nashville: Abingdon Press, 1994). 31 Betcher, Spirit and the Politics of Disablement, 48-67. 32 Nancy L. Eiesland and Don E. Saliers, eds., Human Disability and the Service of God: Reassessing Religious Practice (Nashville: Abingdon Press, 1998). 33 Carter, Including People with Disabilities in Faith Communities, 62-68. 34 Hans S. Reinders, Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids: W. E. Eerdmans Publishing, 2008). 35 Thomas E. Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Grand Rapids: Brazos Press, 2008). 36 Kathy Black, A Healing Homiletic: Preaching and Disability (Nashville: Abingdon Press, 1996). 37 Amos Yong, The Bible, Disability and the Church: A New Vision of the People of God (Grand Rapids: W.E. Eerdmans Publishing, 2011). 38 In 2014 the WCC reviewed this document and in 2016 released it as: “The Gift of Being: Called to Be a Church of All and for All.” Document No. GEN PRO 06 rev.

56 In the modern era Brian Brock and John Swinton suggest that accounts and discourses about the category of ‘disability’ have been broadly categorised by a battle between modern traditionalists (medical and psychological) and reactionaries (normalisation and political justice). They contend that Christian theology provides alternative conceptualities and places modern accounts of disability within a broad canvas of writings within the Christian tradition. As it has been in different times and cultures, a central question facing Christians is still: How should we think of and treat those human beings whom we experience as ‘other’ than ‘us’?39

The Journal of Disability and Religion founded in 1994, continues to be the peer- reviewed journal principally devoted to the above-mentioned themes. Rather than being disability-specific, it spans the breadth of disability ‘classifications’. Its previous iterations were Journal of Religion, Disability, and Health, and prior to that, the Journal of Religion in Disability and Rehabilitation. Interestingly, such name changes also reflect the historical cultural shifts from the medical to the current social-ecological emphasis. This journal has also increasingly become a repository of perspectives from Jewish, Islamic, Buddhist and Hindu traditions, reflecting a growing interest and responsiveness across the faith spectrum. Miles Miles pioneered multi-faith scholarship.40 In the arena of intellectual disability William Gaventa and David Coulter’s collection Spirituality and Intellectual Disability also contains writings from Jewish and Muslim scholars.41 In Australia Newell and Calder edited that country’s first anthology exploring people’s experiences and reflections about disability and spirituality. It featured Christian, Jewish and Buddhist writings.42

2.3.4 Images in disability and spirituality literature

Much of the literature noted above, particularly since the 1980s has been permeated, consciously or unconsciously, by the assumptions and principles of the disability

39 Brock and Swinton, Disability in the Christian Tradition: a Reader, 2-3. 40 Since the early 1990s Miles studied and developed the histories of social and educational responses to people with disabilities in Asia, the Middle East and Africa, with implications for disability service planning. An early forerunner to current interfaith dialogue, one collection of his writings has been published in a special edition of the Journal of Religion, Disability and Health 6, nos. 2/3 (2002). 41 Gaventa and Coulter, “Spirituality and Intellectual Disability: International Perspectives on the Effect of Culture and Religion on Healing Body, Mind, and Soul”, 49-85, 123-139, 147-156. 42 Newell and Calder, Voices in Disability and Spirituality from the Land Down Under, 48.

57 studies approach. This was reflected in goals such as liberation, autonomy, social and political access. Authors and scholars in the various fields of disability theology are writing within cultural milieus that are influenced by the goals of disability studies, resulting in a hermeneutic of suspicion, a term usually ascribed to Paul Ricoeur who used it to describe interpretation of a text with the expectation that it doesn’t mean what it appears to. In applying this to theological research “it becomes a hermeneutic enterprise which tries to understand the intention of God’s salvific acts and the intention of human endeavours.”43

Deborah Creamer traverses the fields of both disability studies and religion. She challenges disability scholars to be concerned with religion by calling for an “accessibility audit” or examination of all religious barriers including challenges of metaphor and scriptural interpretation. She suggests new theological possibilities in which “disability is not simply a consumer or an evaluator of tradition, but rather a constructive element that offers new options for theological reflection.”44

Creamer highlights three innovative models or images of God that offer an excellent summation of the literature of disability and spirituality cited above: the Accessible God; the Interdependent God and the Disabled God. Swinton also has developed a 5- fold schema of images to summarise this literature and both exponents are outlined in the next section; a number of these images are referenced in Chapter 9 when discussing the data from the 14 interviewees and together they provide creative and constructive support for understanding the stories and insights of respondents.

2.3.5 Creamer’s 3-fold disability and spirituality images

2.3.5.1 The Accessible God

Creamer cites the writings of Jennie Weiss Block who developed a ‘theology of access’ which highlights disability as an issue of oppressive structures and exclusion. The Accessible God provides images of inclusion, based on accounts of Jesus’ ministry

43 Daniel J. Louw, A Pastoral Hermeneutics of Care and Encounter: A Theological Design for a Basic Theory, Anthropology, Method and Therapy (Wellington, South Africa: Lux. Verbi, 2000), 104. 44 Deborah Creamer, “Theological Accessibility: The Contribution of Disability,” Disability Studies Quarterly 26, no. 4 (Fall 2006): 2.

58 welcoming people regardless of nationality, gender, background or physical condition. This image also calls for an end to structures and attitudes that are exclusionary and:

… demands we search our community with truth and face the serious reality that some of the people of God have been systematically denied access to the community … [and] demands that we admit that our own attitudes and actions have excluded people. It forces us to ask difficult questions. How can we become more inclusive? What actions do we need to take? What skills do we need? How must we change to make this gospel demand a reality in our communities? Becoming inclusive is a complex, demanding task that asks more of us than we are probably willing to give. … And yet, we cannot be faithful to our Christian vocation if we are not serious about the Christian mandate for inclusion.45

Block foreshadows the priority this current research places upon the required response to what we discover respondents are thinking, feeling and saying about their lives and the questions above provide a challenging framework for interrogation of data.

2.3.5.2 The Interdependent God

Creamer refers to Kathy Black’s theology where, in A Healing Homiletic, she emphasises her understanding of the universe and of Christian communities’ place within it. The “universe is interdependent, and God is part of this interdependence … to work interdependently with God [is] to achieve well-being for ourselves and others”.46

For Black, awareness of interdependence is a contribution that can be made by using the lens of disability. She claims that most people with disability have an advanced awareness of being dependent on someone or something, and that in fact all people, with disability or not, are dependent on other people and on the resources of the natural world for survival. The Interdependent God is inclusive of and interdependent with all. Christian communities provide one place “where people can be accepted for

45 Block, Copious Hosting, 122-123. 46 Kathy Black, A Healing Homiletic: Preaching and Disability (Nashville: Abingdon Press, 1996), 37- 38.

59 who they are as children of God, the place where dependency is acknowledged and interdependency is valued.”47

2.3.5.3 The Disabled God

Arguably the most influential text in the field of disability theology, Nancy Eiesland’s The Disabled God, like Block’s image, relies on the social model of disability. This image is grounded in God’s ability to be in solidarity with those who are oppressed. The image opens the door to the theological task of re-thinking Christian symbols, metaphors, and doctrines to make them accessible to people with disability. The Disabled God rejects the notion that disability is in any way a consequence of individual sin, the scars of Jesus verifying this claim: Jesus did not sin yet became disabled. The Disabled God image also rejects the notion that God has absolute power. In arguing that God is in solidarity with oppressed people, Eiesland’s Disabled God:

… emphasizes relationality over hierarchy, values embodiment in all its diversity, and provides a profound example of inclusion, love and acceptance.48

These three images are directly relevant to the two research questions. The ‘theology of access’ underpins the research methodology of being co-researchers, seeking firsthand accounts rather than making assumptions. Interdependence speaks poignantly to a revised understanding that has moved from people being objects of charity to being active contributors within faith communities, whilst the image of God as disabled shatters any pretence that God is removed from the everyday concerns of people seeking relationships which have meaning and fulfilment.

2.3.6 Swinton’s 5-fold images and process of interpretation

Swinton has also developed a schema of images within the literature of disability theology:

47 Black, A Healing Homiletic, 41-42. 48 Creamer, “Theological Accessibility,” 6-7.

60 (i) God as disabled

(ii) God as accessible

(iii) God as limited

(iv) God as vulnerable

(v) God as giver and receiver.49

Three of these images align with Creamer’s analysis. The additional two images of God as limited (iii) and vulnerable (iv) create a broader spectrum for reflection about practice. Each will contribute to this research’s discussion of a new orientation, as prefigured in the Conclusion to Chapter 1.

Swinton observes that as disability theologians develop images of God, there are two quite different theological movements at play within the literature. On the one hand, the proponents of the disability studies approach, with modern values of autonomy, empowerment and individualism provide images of God that move from a human experience of disability to a modified understanding of God. Jana Bennett asserts that the study of feminist theology and bodies should push us all to consider ourselves as disabled in some way, needing to be redeemed by a Christ whose own body is broken.50 Nancy Eiesland and Don Saliers note:

Scholars of disability issues in religion are countering the prevailing sentiment that the religious practices of the able-bodied constitute the only relevant spiritual pulse and that whatever is outside this ambit is of little if any religious significance. 51

In contrast and affirmed by Swinton, some theologians such as Hans Reinders and Stanley Hauerwas contribute to images of God which emerge from doctrine and tradition and are then clarified and revivified through interaction with the experience of disability.

49 Swinton, “Who is the God we Worship?” 281-297. 50 Jana Bennett, “Women, Disabled,” in Disability in the Christian Tradition: A Reader, eds. Brian Brock and John Swinton (Grand Rapids, Michigan: W.B Eerdmans Publishing, 2012), 439-440. 51 Nancy L. Eiesland and Don E. Saliers, preface to Human Disability and the Service of God: Reassessing Religious Practice, eds. Nancy Eiesland and Don Saliers (Nashville: Abingdon Press, 1998), 15.

61 Reinders contends that transformation of relationships does not ultimately come about with liberal society’s emphasis on rights. What is needed is a change of people’s hearts and without that the goals of the disability studies approach will not eventuate. Rather than rights, friendship and love experienced as gift, and lived in the church, will transform relationships and society:

Nonetheless it is important to see that rights, while necessary, are not sufficient to counteract exclusion … rights cannot open up spaces of intimacy, which are the kinds of spaces where humans have their need of belonging fulfilled. Put simply, disability rights are not going to make me your friend.52

Hauerwas has no interest in the disability studies approach and draws on the experience of profound intellectual disability to draw attention to a basic theological truth: we are created and as such, are inherently dependent. Dependency, not autonomy, is one of the ontological characteristics of our lives. For Christians, the story of Jesus’ life, death and resurrection embraces and defines created being who are wholly and relationally dependent on God and relationally dependent on one another. Distinctions of ability or disability no longer set criteria of discrimination because as created beings we have nothing to offer; it is all gift and promise.53

Swinton’s observation of these two movements within the literature is important for the current research project. Rather than exclusively resting on one of these movements as Reinders and Hauerwas do, this research project, consistent with “intentionality” and respect for human experience, seeks people’s responses to their lived understanding of spirituality. It is anticipated that their human experience of disability will inform the researcher’s understanding of God. On the other hand, it is expected that images of God, especially as Friend, which emerge from doctrine and tradition, will be clarified and revivified through direct interaction with the experience of disability.

This overview of the issues, concepts and ideas that have broadly shaped descriptive and interpretive literature about people with disability and spirituality serves as a brief introduction to literature which is specifically related to spirituality and intellectual

52 Reinders, Receiving the Gift of Friendship, 42-43. 53 Swinton, “Who is the God we Worship?” 281-297.

62 disability. This will be followed by an exploration in Chapter 3 of literature pertaining to intellectual disability, spirituality and friendship.

2.4 Spirituality and intellectual disability

2.4.1 Introduction

The literature review of spirituality and people with intellectual disability, the focus of this research, will focus for two reasons on the period from the 1960s to the time of writing. As outlined in Chapter 1, with the backdrop of the ethical abuses of World War 2, the 1960s heralded the dawn of the rights movement, and ensuing deinstitutionalisation, which influenced and spawned an increasingly large and significant body of literature related to disability theology.

Writing in 1965 as a chaplain in a large institution for people with intellectual disability, Robert Perske sought a more theological understanding of “the mentally retarded (sic)” than prevailed up to that point in time. For this to occur, he claimed an attempt had to be made:

… to face up to and deal with the disturbed relationships that mental retardation can cause in our society, wherever it is found, regardless of the degree of intensity.54

His concern was rejection by the community of people with intellectual disability, and for the development of a theology that saw pastorates and Christian communities as places of connectedness for those who had been exiled. Perske was a pioneer in this sense; optimistic but not naïve. He wrote of the powerful influences that three historical theological understandings still wielded, and which to some extent still linger: (i) intellectual disability is the result of “Bad Blood” and “Sins of the Fathers”. People were removed from society and either sterilised or rejected in various ways to avoid perpetuation of “feeble-mindedness”; (ii) people were known as “Holy Innocents” or “God’s Special Children”, implying they are above humanity and whilst this understanding is more benign than the first, it nevertheless creates a polarity about who is more favoured by God; (iii) a “special theology” in which many concessions

54 Robert Perske, “An Attempt to Find an Adequate Theological View of Mental Retardation,” in The Pastoral Voice of Robert Perske, eds. William C. Gaventa and David L. Coulter (New York: Haworth Press, 2003), 35-52.

63 with liturgy and sacraments are made but which continue to isolate people so that they are not seen as “being like us.”

Perske believed these theological understandings were inadequate as they relied on human difference leading to separation and segregation, the antithesis of Christian community. His hunch was that “whatever it is that bothers us about these persons, it is inevitably connected with something about our own nature that we would rather not see.55

Selway and Ashman’s research into spirituality, health and disability revealed a paucity of writings. In the field of spirituality and intellectual disability, the first documented literature review was undertaken by Swinton for the period 1990-2000, conducted as part of a report exploring the role of spirituality in the lives of people with intellectual disability.56 Five of the six themes Swinton discerned from the literature will be discussed in the next section, citing a wide range of perspectives. Chapter 3 will particularly focus on the sixth theme of friendship which people have said is the most important dimension of their spirituality.

Swinton’s report was the precursor to subsequent research in which he sought the personal opinions of people with intellectual disability about the meaning and purpose of spirituality in their lives. That report, and subsequent studies by Swinton and a handful of others, directly asked people with intellectual disability about their spirituality and will be discussed in Section 3.6.

2.4.2 Swinton’s review of literature 1990-2000

Swinton’s work is valuable for the purposes of this thesis’ review of the literature in the field of spirituality and intellectual disability. He identified six themes which apply from the 1960s to the present and provide the framework for this section of the literature review.

55 Perske, “An Attempt to Find,” 47. 56 John Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities. A report commissioned by the Shirley Foundation in conjunction with the Learning Disabilities Foundation. Undated and without page numbers but in personal communication with the author it was completed in 2000 and subsequently published as A Space to Listen by the Shirley Foundation in 2001. As A Space to Listen is no longer available, and its contents are largely based on the 2000 report, references will be based on the 2000 report.

64 (i) Education, consciousness raising and enabling.

(ii) Spiritual care and social justice.

(iii) Meaning and the interpretation of experience.

(iv) Religious communities and social support.

(v) Transforming stories.

(vi) Spirituality and friendship.

The first five will now be considered, and the sixth, Spirituality and friendship, given the importance people ascribed to this, forms the basis of Chapter 3.

(i) Education, consciousness raising and enabling

Swinton cites a report by J. Males and C. Boswell in a nursing context, which recognises the importance of spiritual needs for people with intellectual disability and calls for nursing staff to have enhanced consciousness and training about people’s spiritual needs. They point out that spiritual needs are assumed to be the domain of the chaplain, thus diminishing the role nursing staff can play in responding to people’s needs beyond those of a religious nature. The conclusion drawn is that this article, representative of the medical model approach, still “assumes that spiritual care is something done to people with learning disabilities, rather than something which they contribute towards.”57

Educating people with intellectual disability about faith has been and continues to be a significant focus in the literature. First published in 1971, chaplain Perske recounted comments from people at his institution which resulted from participation in catechetical and religious festival activities.58 Gaventa, also a chaplain, engaged John Westerhoff’s model of religious faith development, which used four age-related stages (Experienced faith, Affiliative faith, Searching faith and Owned faith) to highlight the

57 J. Males and C. Boswell, “Spiritual Needs of People With a Mental Handicap,” Nursing Standard 4 no. 48 (August 22- 28, 1990): 36. 58 Robert Perske, “The Theological Views of Some of My Mentally Retarded Friends,” in The Pastoral Voice of Robert Perske, eds. William C. Gaventa and David L. Coulter (New York: Haworth Press, 2003), 129-133.

65 benefits of applying this to the religious growth of people with intellectual disability. These stages were less concerned with knowledge and cognitive ability than they were with a process of defining and responding to meaning in human life.59 Biblical stories have been creatively adapted, for the purpose of education and faith development, to liturgies in order to involve and include people with intellectual disability.60 Participation in the Eucharist and education of faith communities has been the focus of at a parish level,61 whilst formal education of , laypeople and parishes has been an increasingly important part of some theological institutions.62

(ii) Spiritual care and social justice

Robert Veatch explores the connection between spirituality and social justice and asserts that the “commitment of the Judeo-Christian tradition to the weak, the needy, the poor, and disabled is overwhelming and consistent,” and develops his religious basis for equality by exploring the notion of stewardship in response to “the problem of our obligation to the retarded (sic) and rest of us who are handicapped.”63 This commitment of concern and care is based on an egalitarianism that sees the resources of the world as a common possession of the community. The responsibility of people individually and collectively is to enact the Judeo-Christian imperative of ensuring equality is the appropriate ethos among humans.

Such equality continues however to be elusive. In Chapter 1 considerable detail was provided regarding the historical roots in Victoria for the neglect of spiritual care. Since deinstitutionalisation in the 1980s, with the withdrawal of chaplaincy services for people with intellectual disability, spiritual care (overtly named), and the recognition of its importance for people with disability, has been largely ignored in social policy

59 William C. Gaventa, “Religious Ministries and Services with Adults with Developmental Disabilities,” in The Right to Grow Up: An Introduction to Adults with Developmental Disabilities, ed. J.A Summers (Baltimore/London: Paul H. Brookes, 1985), 204-205. 60 Gijs Okhuijsen and Cees van Opzeeland, In Heaven There are no Thunderstorms: Celebrating the Liturgy with Developmentally Disabled People (Collegeville: The Liturgical Press, 1992), 5-9. 61 Mary O’Shannessy, Sharing God’s Love: Preparation for the Eucharist of Students with Intellectual Disability (HomeBush, New South Wales: Society of St. Paul, 1995). 62 Robert C. Anderson, Graduate Theological Education and Human Experience of Disability (New York: Haworth Pastoral Press, 2003). 63 Robert, M. Veatch, The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality (New York: Oxford University Press, 1986), 65.

66 planning and service provision. Since the 1980s, when representatives of faith communities had a legitimated presence and provided pastoral care within institutions, faith communities and government have retreated from redefining their relationship for the benefit of people with intellectual disability who now live in community-based contexts. It is the author’s contention that one reason for this has been the development of the independent living movement which critiqued rehabilitation policy and any practice that defined people with disability as passive recipients of care.64 The assertion of people’s individual authority and agency has sometimes led to tensions with religiously-based facilities caring for people with disability. Eiesland observes that what some religious leaders saw as their duty in caring for the weak in obedience to scriptural mandates, independent living activists sometimes interpreted as enforcing dependency and custodial care.65

However spiritual care is defined and practised by faith communities and their agents, the connection with social justice recurs frequently in the literature. In addressing the need for both interpersonal and socio-political changes which raise consciousness about the importance of spirituality, L. Curtis picks up on the issue of spirituality and social justice, suggesting that “refusing to recognize people with learning disabilities as spiritual beings may be the last frontier to be crossed in their emancipation.”66

This issue of spirituality in the lives of people with intellectual disability lies at the heart of this research, which aims to explore the meaning and experience people ascribe to the phenomenon, and in turn raise consciousness amongst disability service providers and faith communities of its importance. This will be a particular focus of discussion in chapters 9 and 10.

64 Centres for Independent Living (CIL) in the United States are clearing houses for information about services, products and technologies and activities related to advocacy. 65 Nancy L. Eiesland, “Barriers and Bridges: Relating the Disability Rights Movement and Religious Organisations,” in Human Disability and the Service of God: Reassessing Religious Practice, eds. Nancy L. Eiesland and Don E. Saliers (Nashville: Abingdon Press, 1998), 205-206. 66 L. Curtis, “Empowering People With Learning Disabilities as Moral Citizens: Overcoming a Double Exclusion?” Unpublished paper (2000), 1-15.

67 (iii) Meaning and the interpretation of experience

This section of the literature review is brought into focus with Burton Blatt’s67 question from over 30 years ago:

So again what is the meaning of mental retardation? … the answer is at the fundamental core of every understanding and decision concerning people so designated. Your definition of mental retardation is intimately linked to your philosophy, attitudes, prejudices, and – if you take the definition as seriously as you should – your practices. What is the meaning of mental retardation? Scratch under the surface of the question, and you may find lurking the most serious question: what is the meaning of life?68

Reinders posits two positions in the quest for meaning in the light of the experience of disability. The first is philosophical realism which reflects a secular cosmology in which disability is a senseless twist of fate: disability arises as part of the universe’s natural laws of chance and randomness. Philosophical realism, he contends, implies there is no purpose or meaning to the experience of disability as it is just part of the human condition. On the other hand, religious people often believe things happen for a reason and that this has to do with divine purpose:

God who is in charge of the universe sends whatever happens in our lives upon us for a special reason. If one happens to believe anything like this there is meaning in disability. Otherwise it is simply one of life’s contingencies.69

Belief in causation is not the only starting theological position when it comes to interpretation of meaning about disability. Many pastoral theologians, myself included, have rejected this because suffering in the world is incompatible with a loving benevolent deity. Across the spectrum of Christian scholarship, however, intellectual disability has been seen as illustrative of something.

67 Burton Blatt (1927-1985) was a pioneer in humanizing services for people with intellectual disability. He is perhaps best remembered as author of the photographic exposé Christmas in Purgatory (1966), a searing portrait of life in a mental institution that brought national attention to the abuse of people with intellectual disability in America's institutions. 68 Burton Blatt, The Conquest of Mental Retardation (Austin, Texas: Pro-Ed., 1987), 77. 69 Hans S. Reinders, “Is There Meaning in Disability? Or Is It the Wrong Question?” Journal of Religion, Disability and Health 15, (2011): 63-64.

68 Brian Brock contends that there are three intertwining questions Christians may use to probe meaning about the phenomenon of disability:

(i) “For whom are we to care, and what sort of care ought Christians to provide?” The activist discourse.

(ii) “What is sickness or disability in relation to what we know of human wholeness and health?” The discourse of definition.

(iii) “What sort of people do we have to become in order to rightly perceive and love all people, including those whom we might wish to shun?” The existential discourse.70

If intellectual disability is illustrative of something, and with the above questions and discourses in view, what are some of the meanings explored in the literature that have application to this research project?

Post-Enlightenment liberalism emphasises the importance of independence, rationality, the ability to reason and capacity for self-advocacy. Western culture places a high priority on these human values and when a person is not able to articulate ideas and thoughts cognitively and logically their personhood has been challenged.

Wolfensberger posits that people with intellectual disability provide a powerful symbol of resistance to a technological age which has assumed god-like status. Their presence is an antidote to the American notion of being all-powerful and militarily mighty therefore people with intellectual disability are contemporary prophets. Their spiritual status is characterised because:

… the opposite is a person who is not intelligent, not scientific, not technological, and not academic; who does simple things instead of complex things; who cannot cope with complexity and technology which passes him by; and who, possibly, is despised for lack of modernity and intellectuality. Is that not the retarded (sic) person of our age? 71

70 Brian Brock, introduction to Disability in the Christian Tradition: A Reader, by Brian Brock and John Swinton (Grand Rapids, Michigan: W.B Eerdmans Publishing, 2012), 12. 71 Wolf Wolfensberger, “The Prophetic Voice and Presence of Mentally Retarded People in the World Today,” in The Theological Voice of Wolf Wolfensberger, eds. David L. Coulter and William C. Gaventa (New York: Haworth Pastoral Press, 2001), 16.

69 Jill Harshaw writes as a parent who has a daughter with a profound intellectual disability, and as a theologian, further develops this radical idea that her adult daughter represents a prophetic presence within the Church. Paralleling Wolfensberger’s critique, Harshaw believes the Church has been subtly captured by a prevailing culture that elevates normalcy and conformity and equates goodness with autonomy, independence and power. She asserts, based on Jesus’ interactions with people socially and religiously marginalised, that an encounter and time spent with people with intellectual disability is an encounter with Jesus and therefore a deepening of the relationship with God. She asks the question: “So of what might believers, individually and corporately, hear these prophets speak?” 72 Likewise, of what will we hear from the participants in this current study?

There are three biblical perspectives that underlie what this means for the Christian community. The first is that to be human is to be loved into being in the image of a Creator (Gen 1: 26-27), which implies dependence on God and interdependence between one another, reflecting mutuality within the Godhead. Being vulnerable to each other is an essential facet of all relationships and was consistent with Jesus’ experience of fragility and weakness. The call within people with intellectual disability to create relationships is strong:

You choose whom to love on the basis of the love they might be willing to give you. You spend time with those who will affirm the pleasure of your company. In disobedience to the words of Christ, you welcome into your homes people who will invite you back … 73

The second implication of such prophetic presence is that in consciously or subconsciously disregarding social constraints about declaring personal needs, their openness about the need for giving and receiving love is demonstrably a signpost of the freedom and abundance promised by Jesus: “I came that they may have life, and have it abundantly” (John 10:10b NRSV). The value we seek is:

… this integrated embodiment of vulnerability and openness that is the essence of the prophetic message – the truth that we are all limited in

72 Jill R. Harshaw, “Prophetic Voices, Silent words: The Prophetic Role of Persons with Profound Intellectual Disabilities in Contemporary ,” Practical Theology 3, no. 3 (2010): 319. 73 Harshaw, “Prophetic Voices,” 320.

70 what we are and can achieve and that undue reliance on our own abilities, intellectual or otherwise, serves only to drive us away from the Source of life and truth … They challenge the over-intellectualising of faith that can undermine spiritual experience and the over-reliance on words to mediate our understanding and experience of God.74

The third prophetic implication is a practical one. As an organic entity, a body, the Church is called to enact its currency of love and ask why these prophetic messengers are so noticeably and overwhelmingly absent. If the Church engages meaningfully with Paul’s imagery as the “Body of Christ” (1 Corinthians 12) it is a startling realisation that the Church is not the Church if they are absent. This implies the absence of Christ within so many gathered congregations.75

These three foundational indicators of the prophetic presence of adults with intellectual disability will be further developed and elucidated in Chapter 9 when discussing the basis on which faith communities might respond to welcoming and embracing as friends, adults with intellectual disability.

The literature that explores the spiritual meaning and lived experience of people with intellectual disability, almost without exception, is written by concerned and curious theologians. However, Creamer notes that people with disability have far too frequently been excluded as integral partners in conversations about the meaning of their faith, an error that this current research methodology seeks to address because the danger is that

… theology pays no attention to people with disabilities at all; at other times it simply speaks to or about them. Theology has rarely engaged in conversations with, or been done by, people with disabilities.76

Some studies since the turn of this century have intentionally sought the direct experience and spiritual perspectives of people with intellectual disability. In the USA Karrie Shogren and Mark Rye77 conducted semi-structured interviews with 41 adults

74 Harshaw, “Prophetic Voices,” 322. 75 Harshaw, “Prophetic Voices,” 322-327. 76 Deborah Creamer, “Toward a Theology That Includes the Human Experience of Disability,” Journal of Religion Disability and Health 7, no.3 (2003): 60. 77 Karrie A. Shogren and Mark S. Rye, “Religion and Individuals with Intellectual Disabilities: An Exploratory Study of Self-Reported Perspectives,” Journal of Religion Disability and Health 9, no. 1 (2005): 29-53.

71 with mild and moderate intellectual disability in order to increase knowledge about their religious beliefs and practices, explore the role of organised religious activities and learn about how they conceptualised God and religion. The majority of participants reported that they believed in, prayed to, and thought about God on a regular basis. Other findings suggested that attendance at worship services did not necessarily translate into closer relationships, and support providers lacked knowledge and experience in facilitating relationships.

In the UK in 2001 the Foundation for People with Learning Disabilities, with Swinton as lead researcher, published A Space to Listen,78 which interviewed people with intellectual disability, their carers and support workers about the role of spirituality in their lives. A Space to Listen identified a real need to understand more fully the significance of the spiritual dimension, and to re-examine strategies of care and support. Arising from this report, two further research projects were undertaken. One was an action research project designed to work with services to help meet the spiritual needs of people with intellectual disability.79 The second, Why are we here? used an interview schedule of 7 questions to complete 19 interviews with people with intellectual disability to explore the meaning of spirituality in their lives. It concluded that connectedness lay at the heart of people’s spiritual perceptions, connectedness either with God or with other people. Friendship, as a form of spiritual connection, was named as the most important thing in their lives.80

The opening paragraph of this section referenced Blatt’s question about the meaning of life. Might an answer to that question be found here in the desire for connectedness with God and other people? The current research project has been inspired by the action research projects of Swinton and colleagues, providing a basis for this research project in the Australian context. The research questions derived from Swinton’s research will be detailed in Chapter 6.7 followed by responses and analysis in Chapters 7 and 8.

78 John Swinton, A Space to Listen: Meeting the Spiritual Needs of People With Learning Disabilities. (London: Mental Health Foundation, 2001). 79 Chris Hatton “et al.” “What About Faith? A Good Practice Guide for Services on Meeting the Religious Needs of People with Learning Disabilities,” (London: The Foundation for People with Learning Disabilities, 2004). 80 John Swinton and Elaine Powrie, “Why are we here?” 7.

72 (iv) Religious communities and support

Swinton’s 1990-2000 review of literature concerning religious communities and people with intellectual disability developed two broad categories.

(i) Literature which deals specifically with theological issues

A range of theological issues focussed on since the 1980s were referred to in the earlier section of the literature review. These included ethics, human rights, advocacy, access, sacraments and liturgy, healing, homiletics, hermeneutics, hospitality and friendship (writer’s emphasis). It is not possible for the purposes of this review to explore each of these areas in depth. However, the literature concerning friendship and spirituality, as it pertains to the lives of people with intellectual disability, will be explored in the next chapter, Spirituality and Friendship.

(ii) The role of religious communities in accepting and developing the spiritual lives of people with learning disabilities.

Within the period of this review, the early writings focused on how Christian communities could best pastorally care for and support families and individuals with intellectual disability. Established relationships could be harnessed to develop Supportive Care Groups, which would provide social integration into the congregation and the community.81 The spiritual lives of people were described in terms of coming in from the margins and being pastorally cared for as consideration was given to them receiving baptism, confirmation and the Eucharist. As part of the Body of Christ, tentative suggestions about the potential of friendship were also being made.82 A prevalent theme in the disability literature about the Body of Christ is based on the Pauline theology of weakness which turns the world upside down: “My grace is sufficient for you, for power is made perfect in weakness.” (2 Corinthians 12: 9 NRSV). Amos Yong writes that this theme is an alert to:

81 Dean A. Preheim-Bartel and Aldred.H. Neufeldt, Supportive Care in the Congregation. A Congregational Care Plan for Providing a Supportive Care Network for Persons who are Disabled or Dependent (Pennsylvania: Mennonite Central Committee, 1986). 82 S. Hollins and M. Grimer, Going Somewhere: People With Mental Handicaps and their Pastoral Care (London: SPCK, 1998), 58-67.

73 … how God empowers and is manifest in and through what the world considers foolishness, feebleness, frailty, fragility, and vulnerability; that the Spirit’s gifts are distributed equally to all members of the body … this therefore elevates people with intellectual disabilities to the centre of the church rather than leaving them relegated to its margins.83

The theme of vulnerability and its relationship to hospitality is another major theological theme in the participation of people with intellectual disability in faith communities. For Tom Reynolds, hospitality is a radical form of reciprocity in which God blesses through the stranger. All human beings are vulnerable strangers in one sense or another, and at one time or another. It is this constant exchange between the roles of guest and host that removes the distinction between who is the outsider and who is the insider and as the research question embraces, the deep spirituality embedded in this interaction is expressive of the presence of God:

In hospitality the centre of gravity lies neither in the home nor in the stranger, neither in host nor guest, but in the God of both who is discovered redemptively in the meeting – indeed, in the role reversal.84

Many books and resources have been produced in the past twenty years with practical suggestions for inclusive environments for people with intellectual disability. One comprehensive manual for faith communities, and for community service providers wishing to connect clients, has been written by Erik Carter. This is an excellent and accessible resource with practical suggestions applicable to a broad international audience.85

In Australia, practical initiatives, such as Disability Action Plans which encourage inclusion in faith communities have been documented.86 Resources such as Luke 14, produced by Christian Blind Mission,87 have been nationally promoted, and some

83 Amos Yong, The Bible, Disability and the Church: A New Vision of the People of God (Grand Rapids: Eerdmans Publishing, 2011), 115. 84 Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality, 243. 85 Carter, Including People with Disabilities in Faith Communities, 53-145. 86 Ann Wansbrough and Nicola Cooper, “Recognizing All Members: The Place of People with Disabilities in the Uniting Church in Australia,” in Voices in Disability and Spirituality from the Land Down Under: Outback to Outfront, eds. Christopher Newell and Andy Calder (New York: Haworth Pastoral Press, 2004), 145-165. 87 Initiated in 2004 Luke 14 is a Melbourne-based program of CBM Australia which has developed a range of on-line narratives and resources which encourage faith communities to be inclusive. https://www.cbm.org.au/get-involved/church/ accessed 5 October 2018

74 multi-faith work has also been undertaken to promote inclusion across the faith community spectrum. One in particular sought the opinions of people with disability and respective leadership in Buddhist, Christian, Jewish and Muslim communities, and will be discussed in more detail in the next chapter.88

As a major theme in the literature about spirituality and intellectual disability, the need for religious communities to be supportive of the aspirations of people with disability, their families and carers, has continued unabated. This momentum has been driven by increased expectations that people with disability have a rightful place in all community contexts, including the spectrum of faith communities.

A contemporary allusion to this is evidenced by Matthew Bogenschutz and Angela Novak Amado in their consideration of important elements for social inclusion. Along with personal relationships, friendships, neighbourhood, recreation and leisure, they expressly reference faith communities as places of important spiritual embrace for people with intellectual disability and their families.89

(v) Transforming stories

For Swinton, the literature overwhelmingly involves accommodation rather than transformation as the primary means of meeting the spiritual needs of people with intellectual disability, an important critique. The assumption is that faith communities, institutions and society should concentrate on how people with intellectual disability can be incorporated into current structures (physical, spiritual, communicational, psychological) without their voices and perspectives challenging or changing values and beliefs about spirituality and living humanly; our obsession with reason and intellect is challenged to begin to explore the significance of dependence and

88 Andy Calder, “To Belong I Need to Be Missed,” Journal of Religion, Disability and Health 16, no. 3 (2012): 262-286. 89 Matthew Bogenschutz and Angela Novak Amado, “Social Inclusion for People With IDD: What We Know and Where we go From Here,” in Critical Issues in Intellectual and Developmental Disabilities: Contemporary Research, Practice, and Policy (Washington: American Association on Intellectual and Developmental Disabilities, 2016): 19-36.

75 interdependence.90 This was eloquently captured by Frances Young almost 30 years ago:

To learn from the handicapped (sic) requires a new heart and a new spirit within us, but if we are prepared to learn, it will produce the new heart and new spirit and we will be immensely enriched – indeed, it will be our salvation. We shall discover what it really means to be human.91

In being hospitable to the stranger and open to people’s stories Thomas Ogletree believes that transformation lies in the recognition of their gifts thus potentially changing how we see the world.

Strangers have stories to tell which we have never heard before, stories which can redirect our seeing and stimulate our imaginations. The stories invite us to view the world from a novel perspective. They display the finitude and relativity of our own orientation to meaning.92

Gaventa, drawing on his extensive experience as a chaplain with people with intellectual disability, claims that we understand someone’s spirituality by walking with, visiting and “feeling with”, or compassion. Spirituality is primarily story: Who are you? What’s most important to you? Tell me about it in words, symbols, art, song, important possessions, important places and important relationships. In exploring people’s spirituality Gaventa engages with stories from his chaplaincy which have transformed his theological understandings. He notes that in the current systems of services and supports, the classic western values that reign supreme are independence, productivity, inclusion and self-determination. The corresponding spiritual questions to be explored with people are: Who am I? Why am I? Whose am I? What kind of control do I have over my life? The stories of these estranged people’s lives and experiences have influenced his personal spiritual search and journey to such an extent that he concludes by saying: So it’s not about “them”, but it is about all of us.93

90 John Swinton, A Space to Listen: Meeting the spiritual needs of people with learning disabilities (London: Mental Health Foundation, 2001). 91 Frances Young, Face to Face: A Narrative Essay in the Theology of Suffering (Edinburgh: T and T Clarke, 1990), 183. 92 Thomas W. Ogletree, Hospitality to the Stranger: Dimensions of Moral Understanding (Louisville: Westminster John Knox Press, 2003), 3. 93 Bill Gaventa, “Communities of Celebration That Reawaken Desire,” Journal of Disability and Religion 19, no. 2 (2015): 97-105.

76 2.5 Exodus: Painting by a young man with intellectual disability

If spirituality is primarily story, as Gaventa claims, with corresponding spiritual questions relating to identity, then personal accounts and exegesis by people with intellectual disability have rarely been recorded, especially in a research context. When they are, such treasures provide the listener, the viewer, with the opportunity to view the world from a novel perspective. One such treasure, and most relevant for this thesis, is a beautiful painting by an unnamed 25 year-old man with intellectual disability.

Figure 2: Exodus: Painting by a young man with intellectual disabilities

As recorded by Ellen Kellenberger, the 25 year old man’s first communion as a boy was refused by the priest and the offended parents broke off contact with the church.94

94 Ellen Kellenberger, “Biblical Exegesis by Persons With Intellectual or Behavioural Impairments,” Journal of Religion, Disability and Health 17, no. 4 (2013): 418-425.

77 An institution for people with disability, with which this man subsequently became involved, was invited by a neighbourhood parish to present an exposition of their works. It so happened that the art teacher had told the story of Moses and the burning thorn bush to her adult pupils. The spontaneous reaction of this man was:

That is a very sad tale … Now I will paint the desolate people because they must go away immediately. I will give them a long rope so that they do not lose one another.95

Kellenberger’s interpretation is that the artist strongly identifies with the Israelite’s wanderings in the wilderness. It depicts an uncertain time in his life when he was contemplating leaving his parent’s home. Being of rather short stature does he depict himself as the first of the group? The group of five men seem rather lost in their surroundings, moving in small steps, slowly and painfully. They are all holding onto the same rope. This rope connects them all, “lest they should lose one another” (as the painter said). It is green – the colour of hope and life in the desert.

Kellenberger surmises that the painter focuses on an overlooked aspect. This is not a triumphal walk of the liberated, but a risky flight of anxious people. The painter appears to understand the ambivalence of hope and fear. There is anxiety about future difficulties and joyful courage about an end to their wandering.96

As this thesis unfolds I invite the reader to reflect on this image, using it as a visual and emotional prompt: imagine holding on to the same rope with those who have traditionally been excluded and recalling this powerful image of connectedness. As the perspectives of the 14 people with intellectual disability emerge, what are the threads in their stories which contribute to the strength of this rope? What future anxieties might be expressed, and what hopes are there for alleviation of, even an end to their exilic experience?

2.6 Conclusion

Five of the six themes of Swinton’s 1990-2000 literature review of spirituality and intellectual disability have been considered in detail above (2.4.2). Discussion of the

95 Kellenberger, “Biblical Exegesis,” 422. 96 Kellenberger, “Biblical Exegesis,” 424.

78 theme Meaning and the interpretation of experience (2.4.2 (iii)), referred to a few studies since the turn of this century which have intentionally sought the direct experience and spiritual perspectives of people with intellectual disability. The research of Swinton, on which this research project builds and hopefully extends, concluded that connectedness in the form of friendship either or both with God and other people, was the most important thing in their lives. For that reason, hypothesising that friendship will emerge as a significant factor in the spirituality of the research participants, the sixth theme Spirituality and friendship, demands significantly more attention and will be the focus of Chapter 3. This chapter includes a review of the small number of research projects to date which have directly sought the opinion of adults with intellectual disability about the meaning they ascribe to their spirituality.

79 Chapter 3: Spirituality and Friendship

3.1 Introduction

The previous Chapter considered five of the six major themes identified in the literature by Swinton. The sixth theme, spirituality and friendship, demands greater attention as it is anticipated friendship will emerge as a significant factor in the spirituality of the research participants. This claim is based on the few known participatory action research projects undertaken in the past 15 years that investigated the spirituality of adults with intellectual disability.

This chapter will commence with contemporary definitions of friendship and an exploration of the characteristics of friendship. Historical and biblical foundations of friendship will then be discussed to illustrate some important perspectives about friendship up to the present time. Biblical insights reveal an understanding of friendship as ‘gift’ and ‘call’ which is based on agape and which is seen as foundational to all responses by Christian faith communities. The final sections will examine the participatory action research projects undertaken in the past 15 years.

3.2 Definitions and characteristics of friendship

3.2.1 Definitions of friendship

The Merriam Webster Dictionary defines friendship as:

‘one attached to another by affection or esteem’1 whilst, the Oxford Dictionary defines friendship as:

‘a person with whom one has a bond of mutual affection, typically one exclusive of sexual or family relations.’2

For this research, the working definition of friendship is Gaventa’s long-standing view that:

1 https://www.merriam-webster.com/dictionary/friend accessed 20 March, 2017. 2 https://en.oxforddictionaries.com/definition/friend accessed 20 March, 2017.

80 … a relationship [is] characterised by mutual enjoyment, reciprocity and acceptance, in contrast to relationships in which a person is continually a ‘client’ or ‘consumer’ and constantly being treated, programmed or fixed.3

This embracing definition of friendship both stands the test of time and reveals themes applicable to this research in that it recognises the capacity of people with intellectual disability to form mutually satisfying relationships and challenge prevailing cultural attitudes.

3.2.2 Characteristics of friendship

Keith McVilly notes that concepts of friendship may vary for an individual across a lifespan and changing personal circumstances. He asserts however that it is possible to extract from the literature a number of critical characteristics, including for those with intellectual disability.4 His literature survey of characteristics denoting adult friendship is illustrative and a thematic summary is sufficient for the purposes of the current thesis, two studies in particular.

Mary Parlee’s survey of 40,000 adult Americans identified eight critical aspects of friendship in the general population.

(1) enjoyment – we like to spend time with those persons identified as our friends; (2) acceptance – we do not try to change the nature of those we call friends; (3) trust – we assume that those we call our friends will act in our best interests; (4) respect – we think our friends make good judgements; (5) mutual assistance – we help and support our friends and they support us; (6) confiding – we share confidential information; (7) understanding – we believe a friend knows us well and understands what we like and don’t like; (8) spontaneity – we feel free to be ourselves with friends.

In the second study, Barry Wellman identified five fundamental functions of friendship:

3 Bill Gaventa, “Gift and Call: Recovering the Spiritual Foundations of Friendships,” in Friendships and Community Connections between People with and without Developmental Disabilities, ed. Angela Novak Amado (Baltimore: Paul H. Brookes, 1993), 43. 4 Keith R. McVilly,““I Get by With a Little Help From my Friends”: Adults With Intellectual Disability Discuss Friendship” (PhD diss., University of Sydney, 2004), 13.

81 (1) provision of voluntary assistance (e.g., household jobs and other domestic services); (2) giving or lending tangible items (e.g., a household item, money); (3) practical assistance with personal problems (e.g., advice about a family matter, support during a personal crisis); (4) advocacy (i.e., acting as an intermediary or speaking on their behalf); (5) general information (e.g., about a house, a possible job).

McVilly summarizes the characteristics of friends as:

… people who share life experiences in common and in so doing, they experience pleasure in each other’s joy and pain in each other’s hurt. They can count on each other for assistance in time of need; they are loyal and offer each other consistency in social, emotional and/or tangible support. There is a degree of intimacy that is not necessarily sexual in nature, but involves mutual disclosure of the self, in turn giving rise to a significant degree of personal vulnerability. Finally, the absence of friendship can be characterized by the affective experience of loneliness which in turn can either motivate the human person to seek out friendship (where they have the skills to do so) or lead to poor health in the form of a depressive illness.5

In concluding this section, Table 1 below summarizes the characteristics of adult friendship, based on McVilly’s literature survey.6 It is important to note the paucity of research, until the past 15 years, about what people with intellectual disability say are the important characteristics of friendship. McVilly’s characteristics nonetheless provide a valuable thematic baseline for the purposes of this research and subsequent discussion of findings.

5 McVilly, ““I Get by With a Little Help From my Friends,” 13-14. 6 McVilly, ““I Get by With a Little Help From my Friends,” 13-14.

82

Sociological Dimensions Psychological Dimensions

(actions or contexts) (thoughts or feelings)

Voluntary Attraction & Affection (non- sexual) Mutual/Reciprocal Independent of mutual self- Sharing absorption

Commitment/Endurance/Loyalty Regard/Respect Dyadic activity Acceptance and belonging Co-operative (Non-competitive) Understanding and endorsement

Benevolent/Care and mutual Affirming/Reinforcing welfare Esteem enhancing Assistance (tangible, practical, information) Perceived Equality Advocacy Trust/Security

Intimate/Confiding/Disclosure Dependable

Freedom for spontaneity Common values and priorities Independent of kinship Pleasurable/Enjoyment Independent of sexual behaviour Absence of loneliness

Independent of contractual Pain experienced on separation regulation

Table 1: Characteristics of adult friendship (McVilly)

The above discussion of definitions and characteristics of friendship reveals that the parameters are broad and complex, and influenced by gender, socio-economic status, geographic location and culture.7 This provides a helpful introduction to consideration of the historical foundations of friendship, both classical and biblical. The literature on the topic of friendship is vast and these sections will provide a backdrop relevant to

7 Jay Sokolovsky and Carl Cohen, “Toward a Resolution of Methodological Dilemmas in Network Mapping,” Schizophrenia Bulletin 7 (1981): 109-116.

83 this research. A thematic understanding lays the foundation for considering friendship in the context of Christian faith communities as ‘gift’ and ‘call’.

3.3 Historical foundations of friendship

3.3.1 Classical understandings of friendship

C.S. Lewis develops an approach founded on classic essays on friendship by Plato, Cicero, Aristotle, Augustine, Bacon, Montaigne and others where friendship is viewed as the most important of all human forms of love.8

Michel de Montaigne’s essay ‘On Friendship’, published in 1593, describes friendship as having ‘one soul in two bodies’, a ‘complete fusion of the wills’ (translated 2003). In a way that is reminiscent of the principle of loving another as one loves oneself, his fusion characterised a friend as ‘not another but myself.’9

Friendship as a gift of the highest value for humanity is highlighted by Cicero, for whom the relationship of friendship between two people was characterised by:

a complete accord on all subjects human and divine, joined with mutual good will and affection. And with the exception of wisdom, I am inclined to think nothing better than this has been given to man (sic) by the immortal (Laelius: a dialogue on friendship, Part 1, Section 6).

These high values needed grounding in the diversity of life and practice. Aristotle analysed friendship in terms of three clarifying and qualitative categories: Chresimon or useful friends; Hedo, pleasurable or social/familiar friends; and Agathon, or virtuous/communicating friends. This is more than a theoretical principle, we need friends to survive. He (translated 1940) claimed that “without friends no one would choose to live, though he had all other goods (Ethics, Book VIII, Section 1). In describing friendship thus, will these categories of ‘usefulness’, ‘sociable’ and ‘virtuous’ also apply to adults with intellectual disability? In the Graeco-Roman world, friendship was viewed in moral terms as a form of love, referred to as philos, and was regarded as the natural basis for all positive social relationships because it stressed mutual attraction and respect. It was a male prerogative, and in its purest form was

8 C.S. Lewis, The Four Loves (London: Fontana Books, 1960). 9 Michel de Montaigne, The Complete Works: Essays, Travel Journals, Letters, trans. Donald Frame (London: Everyman’s Library Classics, 2003).

84 expressed in the relationship between philosopher and pupil. Friendship may have had sexual elements, but it was not primarily sexual love, or eros. In agape, we see an inclusive, universal love offered to anyone regardless of whether that love is returned or whether we find that person easy to love or not. Because it is foundational to a Christian response of friendship the concept of agape is addressed in the next section on the biblical foundations of friendship and considered in more detail in Chapter 8

Augustine (translated 1963) adapted his perspective on friendship across the course of his life. In early life he described human friendships as being incompatible with friendship with God: “… a dangerous enemy, a seduction of the mind lying beyond the reach of investigation.” In his later life we see a diametric shift; friendship is something to be celebrated even, and a means by which the divine could be experienced:

… to talk and laugh and do kindnesses to each other; to read pleasant books together; to make jokes together and then talk seriously together; … to be sometimes teaching and sometimes learning … These and other similar expressions of feeling, which proceed from the hearts of those who love and are loved in return, and are revealed in the face, the voice, the eyes, and in a thousand charming ways, were like a kindling fire to melt our together and of many to make us one.10

These classical understandings of friendship provide a foundational backdrop for the exploration of friendship’s importance for adults with intellectual disability: particularly in developing ways of understanding the expression of their spirituality.

3.3.2 Friendship perspectives since medieval times

This sense of friendship’s association with God, and the development of a theology of friendship in the medieval period, is reflected in Joan Chittister’s description of the benefits of friendship between St. Benedict and Aeldred of Riveaulx:

The tradition was an unfailing one: friendship became the mucilage of the Cistercian monk and abbott Aeldred of Riveaulx, who dedicated his life to the subject. In the twelfth century he wrote a theology of friendship

10 Rex Warner, trans., The Confessions of Saint Augustine (New York: New American Library, 1963), 77-78.

85 that derived from the thesis that “God is friendship”. To Aeldred, friendship was a necessary dimension of the Christian life and a particular dimension of an individual’s spiritual awareness as well.11

In tracing the historical development of philosophical approaches about the notion of an ideal friendship, David Garrioch states that by the eighteenth century most authors were uncompromising in the belief that equality was necessary between friends, a key concept that directly addresses historical and current discrimination, marginalisation or prejudice. He quotes Emmanuel Kant:

The relation of a patron, as benefactor, to his protégé, as a beneficiary obliged to be grateful, may indeed be a relation of mutual love, but not of friendship; for the respect due from each to the other is not equal.12

The question of exclusivity was also a significant issue, with most authors imagining friendship as exclusive and therefore, in its purest form, involving only two people. Such a view reflected a belief that friendship operated within an emotional economy in which there was only so much goodwill to go around, paralleling the economist’s view of that time which believed that wealth was limited and could only be redistributed, not expanded. Dupuy de La Chapelle wrote that “the most perfect friendship is a sweet, tender and constant union between two people.”13

Another prevalent view of the day was that pure friendship was not possible for women; either with other women, or with men. Friendship included only the intellectual and the objective and it was thought that women always brought the sensual, supposedly undermining what existed. Friedrich Schleiermacher, prompted by his experience with his friend Eleonore, refuted this position. He argued that the limitations of gender had to be overcome, and that friendship was the starting point for understanding and for the freedom of both sexes to experience a fuller humanity.14 An understanding about friendship not being possible for women seems strange in our

11 Joan Chittister, The Friendship of Women: The Hidden Tradition of the Bible (New York: BlueBridge, 2006), viii. 12 David Garrioch, “From Christian Friendship to Secular Sentimentality,” in Friendship: A History, ed. Barbara Caine (London: Equinox Publishing, 2009), 170. 13 Garrioch, “From Christian Friendship to Secular Sentimentality,” 171. 14 Ruth Drucilla Richardson, The Role of Women in the Life and Thought of the Early Schleiermacher (1768–1806): An Historical Overview (New York: Edwin Mellen Press, 1991), 55-97.

86 current era; in seeking people’s views I will be seeking responses from both women and men.

Socio-political, perhaps even justice-making or advocacy elements of relationships were important, and Chittister’s descriptive allusion about true friendship in its embodiment of truth, empowerment and witness is evocative: “… the love of a friend always comes with a lantern in hand.”15

This idea of friendship as limited and exclusive, led religious writers to grapple with the concern, raised earlier by Augustine that human friendships might distract from and compete with divine friendship. This was generally resolved by reinterpreting Aristotle’s idea of the highest form of friendship in which virtue was the basis of true friendship and in this sense reflects the essence of God, a significant insight for this research:

… but if your mutual and reciprocal communication be founded on charity, on devotion, on Christian perfection, O God! How precious will your friendship be! It will be excellent because it comes from God … All other friendships … are but shadows in comparison with this.16

This overview of historical understandings of friendship, which have both influenced and been influenced by Christian theologians finds a dialogical partner in the next two Sections where biblical understandings of friendship are discussed. The discussion begins with Aristotle’s threefold categories of friendship-defining love, and a critique of his friendship category, agathon as it relates to responding to people perceived as ‘different’. New Testament references to Jesus and friendship are used to inform the discussion.

The second section will describe a schema for considering friendships with adults with intellectual disability in terms of ‘gift’ and ‘call’. This schema highlights the centrality of agape love as the means to express hospitality to the stranger, providing the pre- condition to forming a friendship which may contain reciprocity and mutuality.

15 Chittister, The Friendship of Women, xiii. 16 Garrioch, “From Christian Friendship to Secular Sentimentality,” 171-172.

87 3.4 Insights from scripture: Towards a biblical understanding.

3.4.1 Backdrop: Aristotle – difficulties of agathon (goodness)

Aristotle’s friendship categories of chresimon or utility, hedo or pleasure and agathon or goodness provide a philosophical source in Western Christian tradition for interpreting and understanding relationships.

For Swinton a friendship of utility, chresimon, is a friendship based on usefulness and people remain friends for only as long as they are useful to each other. Friendships of pleasure, hedo, are based on the amount of pleasure the participants gain from the relationship, remaining friends primarily for mutual enjoyment. A friendship of virtue, or goodness, agathon, the highest according to Aristotle, is exclusively between two people, both of whom must share the virtue of goodness.17

Swinton critiques this third category for two reasons. Firstly, that:

… friendship could only occur between equals, that is, two good people serving to actualize the virtue of goodness in their friendship relationship.18

He claims that friendships based on the principle of like-attracts-like will inevitably exclude those who are perceived as different. The caring response by the church must instead be based on the type of friendship revealed in the life and death of Christ:

In the incarnation, one finds God willingly entering into friendship with his creatures who could never be his equal. In the earthly life and ministry of Jesus one finds a continuing picture of a man entering into friendships not with social equals, but with those whom society had downgraded and considered unworthy of friendship. In the death of Jesus one discovers a man committed to these same friends even unto death.19

Secondly Swinton notes that Aristotle considered friendship to be something that decreased in quality as it increased in quantity. This was not borne out in the model of

17 John Swinton, Resurrecting the Person: Friendship and the Care of People with Mental Health Problems (Nashville: Abingdon Press, 2000), 44-45. 18 Swinton, Resurrecting the Person, 44. 19 Swinton, Resurrecting the Person, 44-45.

88 friendship which Jesus displayed; quality was maintained with a wide range of people, and in particular with those who were cast out by society. Jesus presents a model of liberation, an “inescapable moment of radical change”20 in our perceptions of friendship. Jürgen Moltmann captures it unequivocally: “Jesus does not bring a dry sympathy, but an inviting joy in God’s kingdom to those who are “reprobates” according to the law.”21 There are values beyond the social-scientific frameworks of inclusion and a spirituality of inclusion within a gospel framework enhances theological reflection as a part of data analysis.

The friendships of Jesus model open relationships focused on ‘the outsider’, providing a template and core of any church missional response seeking to follow and image him faithfully.22

Swinton’s two-fold critique of Aristotle’s agathon provides an important lens for this thesis which takes the view that a Christian response is inspired first and foremost by God’s love and goodness, agape. Revealed in Jesus’ model of friendship, agape becomes the primary motivation for friendships of increasing mutuality. Biblical insights reveal an understanding of friendship as ‘gift’ and ‘call’ which is based on agape. The recognition of agape impels a response of friendship: God’s ‘gift’ of friendship ‘calls’ Christians’ to do likewise, both individually and corporately.

Explicit references to Jesus and friendship in the New Testament as they influence the praxis of friendship by faith communities will be discussed in Chapter 9.

3.4.2 New Testament references to Jesus and friendship

In the New Testament Jesus is referred to as ‘friend’ on only two occasions, both most important to the message of Jesus. In the first we read:

The Son of Man has come eating and drinking; and you say: “Behold a glutton and a drunkard, a friend of tax collectors and sinners!” (Luke 7: 34 (NRSV))

20 Swinton, Resurrecting the Person, 47. 21 Jürgen Moltmann, The Open Church (London: SCM Press, 1978), 55-56. 22 Swinton, Resurrecting the Person, 46-47.

89 Moltmann argues that the inner motivations for this striking friendship with people considered ‘beyond the pale’ lies in Jesus’ celebration of the messianic feast of God’s kingdom every time he eats and drinks with them. In combining affection and respect, he becomes their friends because of his joy in their common freedom – God’s future.23

The second reference is:

No-one has greater love than this, to lay down one’s life for one’s friends. You are my friends if you do what I command you. I do not call you servants any longer, because the servant does not know what the master is doing; but I have called you friends (John 15:13-15a (NRSV)).

Here the sacrifice of one’s life is the highest form of love, manifested as friendship. The switch from being servants to friends is most significant for the relationship between Jesus and the disciples. Moltmann believes that in the fellowship of Jesus they now experience him in his innermost nature as Friend. Open friendship now becomes the bond in their fellowship and, most significantly, becomes their vocation in a society still dominated by relationships of masters and servants with corresponding inequality of power, freedom and choice.24

For Brian Edgar, nothing could be more gracious than God’s offer of friendship. In elevating friendship, he claims that unlike servants, friends are not justified by their work, they are appreciated for their friendship.25 Edgar refers to Aeldred of Rievaulx’s Treatise Spiritual Friendship:

… among the stages leading to perfection friendship is the highest … bordering upon that perfection which consists in the love and knowledge of God, so that men (sic) from being a friend of his fellow man (sic) becomes the friend of God.26

Whatever our theology of grace, this nonetheless identifies the intimacy and binding to Jesus in his innermost nature as Friend.27

23 Moltmann, The Open Church, 55-56. 24 Moltmann, The Open Church, 57. 25 Brian Edgar, God is Friendship: A Theology of Spirituality, Community and Society (Kentucky: Seed Bed Publishing, 2013), 37-40. 26 Aldred of Rievaulx, Spiritual Friendship, trans., Mary Eugenia Laker (Kalamazoo, MI: Cistercian Publications, 1977), bk. 2, par.14 and 15. 27 Moltmann, The Open Church, 57.

90 3.4.3 Gift and call – biblical foundations

Based on decades of practical, theological and spiritual reflection in the context of people with intellectual disability Gaventa proposes five biblical themes that relate to friendship. They describe God’s love and grace for humankind as ‘gift’, and the response to that gift in love and service, as ‘call’.28 Gaventa states that in classic traditions, friendship was a great gift and treasure, a moral imperative, and that it was a human pathway to the divine. In the biblical tradition friendship reveals the grace, love and call of a caring God. Friendships are one of the expressions of God’s grace, a grace that compels the reciprocal actions of both loving God directly, and loving God through the love of others. For Gaventa, from a biblical perspective, friendship needs to be understood in the context of both gift and call.29

These five biblical themes provide a foundation for data analysis and discussion as to how faith communities might respond through friendship with adults with intellectual disability.30

3.4.3.1 Created in God’s image for relationship

The basic value of humankind comes from the fact and gift of creation; in the biblical narrative every person is created in the image of God (Genesis 1:28) and called into a relationship with God and with others. The “Why?” of friendship and love is that we have been given value by virtue of our creation, not because of our abilities or accomplishments, and are called to see that value in every person. John Landgraf captures this sense of love and friendship:

… it is a fact – that you are precious. You are precious simply because you are, whatever your equipment and however you may use it. You were born that way – created in the image of God and given life by the breath of God. To see that and be grasped by the reality of it is to love.31

28 Gaventa, “Gift and Call,” 64. 29 Gaventa, “Gift and Call,” 45-46. 30 Gaventa, “Gift and Call,” 46-50. 31 John Landgraf, “Love and Friendship,” Minister’s Magazine, X (1), Fall 1989, 3.

91 3.4.3.2 God’s acceptance of us in friendship

In the Hebrew Bible and the New Testament, God’s choosing, freeing and saving of the people are evidence of God’s acceptance and commitment, in spite of human accomplishments or abilities. When a person feels unworthy, unloved or lonely (or as expressed in the field of intellectual disability, devalued, stigmatised, labelled or isolated), the gift of friendship provides first and foremost acceptance of the other person. On the basis of being created in God’s image, it provides celebration of the other.

3.4.3.3 Loving others as God loves us

The New Testament passage where, as noted, Jesus calls his disciples friends, is central to Christian understanding of friendship as a response to God’s love and choosing of humankind. Inherent in this is the sacrificial, risk-taking character of a love in which God does not give up on the people in spite of their waywardness. The centrality of agape, the call to love others in the same radical, impartial and universal way that God has loved, is a call to love wherever and whomever that turns out to be. “The call to love in this way is sometimes called a paradox, that in giving one receives, and in losing one’s life, it is found.”32

When Christian communities make a response to strangers based on friendship, they must do so mindful that some people who are alienated from the church on account of disability or difference, recount feeling powerless and patronised on account of charitable intent or actions.33 ‘Charity’ has become synonymous with ‘doing things for and on behalf’ of a person perceived to be without agency. The word charity has its origins in the Greek agape, and the Latin caritas, often translated as love. If the act of Christian friendship has its origins in love, agape, it is essential for the Church to have a clear understanding of agape; an understanding which removes the alienating actions of paternalism.

32 Gaventa, “Gift and Call,” 49. 33 Calder, “To Belong,” 280.

92 3.4.3.4 The gift of hospitality

Welcoming the stranger through acts of hospitality is at the heart of the Christian tradition. As the host creates the space where the stranger, or guest, feels welcomed and accepted, paradoxically the host is often the one who receives. The stranger turns out to be a gift for everyone involved. Anyone unknown and/or thought to be beyond God’s loving embrace is the person referred to by the apostle Paul: “Do not neglect to show hospitality to strangers, for by doing that some have entertained angels without knowing it.” (Hebrews 13:2 NRSV)

The gift and call to hospitality beckon us back to a universal and just God who is concerned about specific and particular relationships. In emphasising the imperative of hospitality as a dimension of friendship, Gaventa names its importance in balancing the challenge of universal love with the specificity of particular people. However, this challenge to love impartially is not without difficulty and paradox:

To love equally, fairly, justly, and universally, as God loves everyone is a challenge that can lead, paradoxically, to disengagement and distance from others.34

The challenge of this disengagement will be addressed in Chapter 9 when considering fears and apprehensions that faith communities may have in welcoming the stranger – namely, adults with intellectual disability. How can this fear of the other be bridged? It is in combining the universal with the specific so that the host and the guest experience each other in a new orientation, one of interdependence and of covenant, in which the excluded becomes embraced, the stranger becomes the friend.

3.4.3.5 Friendship as covenant

Throughout the Bible God’s faithfulness is evidence of God’s commitment to a relationship, a relationship defined by covenant within which lies the promise of continual and ongoing presence if God’s commandments are heeded. But even in the midst of desolation, final justice and well-being are assured, for God’s steadfast love (hesed) rings true and shall prevail. The power of God’s covenant is that nothing – whether gods, natural forces, or other nations – can separate us from God’s love.

34 Gaventa, “Gift and Call,” 50.

93 God’s promissory word stands forever; it is transcendent and does not change (Isaiah 54: 7-8).35 Thomas Reynolds reminds us that covenant faith merges with creation faith, in that the hope of Zion is assured by the stability of the cosmos, the order of which is maintained by God’s unshakeable faithfulness. In his cogent discussion of divine love, particularly for the vulnerable, Reynolds asserts that creation is the worldly milieu in which God becomes revealed: “… creation itself is a communication of God’s loving intention to give … and the consequence is a good, a grace received.”36

It is grace, and grace alone, which provides the starting point in the notion of God’s friendship with human beings. God’s friendship is the gift that precedes Christian friendship and makes it possible.37 Gaventa asserts that in both friendship and covenant there is a sense of both choosing and being chosen. The heart of an everlasting friendship is built on such choosing and faithful commitment.38

In Chapter 9, the role and power of faith communities as places of hospitality and friendship will be examined. Based on the accounts of the 14 interviewees Christian faith communities will be challenged to consider and embrace an old yet new orientation: God’s covenant of love and grace calls Christians to friendship with people exiled and alienated by their disability.

3.5 Spirituality, friendship and intellectual disability

3.5.1 Key issues and proponents

This section provides an overview of key issues and proponents in the field of spirituality, friendship and intellectual disability. It also provides a thematic link to the section that follows that describes the handful of research projects which have directly asked adults with intellectual disability about their experiences and perceptions of spirituality and religion.

When Jean Vanier founded L’Arche in 1964 its character reflected a spirituality based on the Beatitudes (Matthew 5: 3-11). Vanier’s action of inviting two men with

35 Reynolds, Vulnerable Communion, 150. 36 Reynolds, Vulnerable Communion, 158. 37 Reinders, Receiving the Gift of Friendship, 15. 38 Gaventa, “Gift and Call,” 47-48.

94 intellectual disability from the local institution into his home has prompted an international movement and provided a radical example of Christian community. Life lived in community with the ‘poor’ is understood to be not only a form of charitable service, volunteer ministry or social solidarity, but also a source of transforming grace and liberation. Transformation takes place through relationships with persons with intellectual disability which “are of the heart”, in which priority is given to simply ‘being with’ in a mutual sharing of life and love rather than only ‘doing for’. Emphasis is given to relationships of equality, mutuality and reciprocity.39 Stanley Hauerwas and Jean Vanier write of these relationships and with God, as friendship:

We have to hear Jesus knocking at the door and then open the door and let him come in to be our friend. To become a friend of Jesus is to become a friend of the excluded. As we learn to be a friend of the excluded, we enter this amazing relationship which is friendship with God.40

Describing the move from exclusion to inclusion, Vanier writes that if we start to include the disadvantaged in our lives and enter into heartfelt lives with them, they will change things in us. They will break down the prejudices and protective walls that give rise to exclusion in the first place.

The excluded, I believe, live certain values that we all need to discover and to live ourselves before we can become truly human. It is not just a question of performing good deeds for those who are excluded but of being open and vulnerable to them in order to receive the life that they can offer; it is to become their friends.41

‘Being with’ is a powerful precursor to the development and sustainability of friendship with people with intellectual disability. Hauerwas observes that because Vanier is so embodied by and in the story of Christ, there is no need to give meaning to the lives of those he lives with.

Such questions and problems do not arise because you do not need to ask such questions about your friends. Friends need no justification.

39 Hryniuk, Theology, Disability, and Spiritual Transformation, 4-5. 40 Stanley Hauerwas and Jean Vanier, Living Gently in a Violent World: The Prophetic Witness of Weakness (Illinois: InterVarsity Press, 2008), 41. 41 Jean Vanier, Becoming Human (London: Darton, Longman and Todd, 1999), 83-84.

95 Friendship is a gift and, like most significant gifts, it is surrounded by mystery. We finally cannot explain friendship any more than we can explain our existence. We can only delight in our friends.42

Delight in friendship we will. Delight in mystery we will. However, this research seeks more. Given the paucity of research on this specific topic, it seeks an understanding of the role friendship plays in the spiritual lives of people with intellectual disability, and to specifically appreciate the meaning they ascribe to it. In turn, this will potentially contribute to a raised awareness within Christian communities of the importance and power of friendship to create a deeper spirituality of interdependence and community: a more representative Body of Christ. This research also seeks to influence change at both policy and practice levels, change which aims for recognition of spirituality’s importance based on what the research interviewees say is important to them.

Gaventa was an early contributor to the literature expounding the giftedness inherent in friendship with people with intellectual disability. Writing in the United States at a time of transition from segregated services to community-based lifestyles, he noted that “[u]ntil recently, friendship has been ignored in both theory and practice within the world of developmental disabilities.”43 He argued that as the phenomenon of friendship becomes a key component in supporting people move to community living, there needs to be “rehabilitation” in the way that professional caregivers view their “clients”, so that the personal fulfilment of a person takes precedence over participation in “programs”, a clear expression of person-centred care. A focus of the current research will also assert the need for a similar “rehabilitation” within faith communities. Gaventa believes Christian faith communities are important places of hospitality for people with intellectual disability; however a renewed understanding and appreciation of friendship is required to enable such connectedness.44

Chapter 9 will address how faith communities respond in friendship to adults with intellectual disability and give further consideration to this issue of embrace, both its theological underpinnings and the dynamics of a practical response. Carter has written extensively about issues of including people with disabilities in faith communities and

42 Hauerwas, Timeful Friends, 23-24. 43 Gaventa, “Gift and Call,” 41. 44 Gaventa, “Gift and Call,” 45-46.

96 has developed a range of practical tools and checklists for congregations to check their physical, social, educational and liturgical responses. He addresses the social response, the absence of friendship in the lives of people with disability, and the opportunity for faith communities to “play a role in restoring disconnected lives by intentionally fostering enduring and mutual relationships among all of their members.”45 In addition to fostering friendships within the worshipping community, Carter also writes of congregations establishing relationships with local group homes and other community providers of services. In this way, some people who have been previously institutionalized or live some distance from family, may have the opportunity of enhanced quality of life. In turn, the social connectedness of the congregation, and its quality of life, is enhanced by the diversity of people in its midst.46

Extensive scholarship about friendship and people with disability is attributed to Swinton. Before examining his research and writings specifically in the field of intellectual disability (section 3.6), it is important to note two significant insights he makes from unrelated but overlapping contexts: (i) friendship with people experiencing mental health concerns, and (ii) Christian friendship as a form of resistance to evil, referencing the evil that shuns refugees and asylum seekers. Such resistance is enacted in hospitality to the stranger, through friendship, as an act of love, worship and devotion to God. Both insights have significant application to the current research with people with intellectual disability.

In the first, Swinton presents a model that cares for people experiencing mental health problems, drawing on principles of liberation theology. Rather than being defined by pathologies he asserts the priority of their identity as human persons who are passionately loved by God. Swinton suggests that it is the radical friendship of Jesus which reminds the church of its mandate to be in solidarity with those who are alienated by society:

The role of the Christian community truly must be to become a community of friends who take seriously their ministry of resurrection … to struggle alongside those who are oppressed and marginalized, in

45 Carter, Including People with Disabilities in Faith Communities, 124. 46 Carter, Including People with Disabilities in Faith Communities, 127.

97 order that they may find a place of value and acceptance within which hopeful relationships can bring healing, hope and resurrection.47

In the second, Swinton unfolds the theological significance of offering hospitality to those considered strangers. He cites Jesus identifying himself as the xenos, the stranger, and those who offer friendship to the stranger will be welcomed into the kingdom of heaven. It is in fact a gesture of love towards Jesus. In offering hospitality and friendship towards the stranger one encounters Jesus.

Indeed one might even go so far as to suggest that such acts of friendship towards strangers are, in fact, acts of worship. By calling his disciples to perform radical acts of hospitality …, Jesus places “the stranger” under divine protection and his followers under divine obligation to offer hospitality towards the stranger.48

If the assumption of this research is that people with intellectual disability are the outsiders, the strangers, and that friendship is important to them, what do we know of their stated preferences and desires for such relationships? Might faith communities be more likely to respond with friendship if they become aware of people’s aspirations? Perhaps ignorance has played a significant role in the absence of people with intellectual disability? The next section will note that until the past two decades this topic has rarely sought first-hand accounts of what people with intellectual disability say about friendship. Then, action research studies in the field of spirituality and intellectual disability which seek to learn directly from people with intellectual disability, will be shown to have highlighted that friendship is a vital ingredient of people’s spirituality. These studies are significant because it is anticipated that friendship will also emerge as a significant factor in this research project.

3.5.2 What do people with intellectual disability say about friendship?

One of the earliest studies on friendship for adults with intellectual disability was published in the context of documenting a relationship between two men with intellectual disability living in an institution. Notwithstanding the dated terms and language, in 1966 C. MacAndrew and R. Edgerton suggested that “the existence of

47 Swinton, Resurrecting the Person, 44. 48 John Swinton, Raging with Compassion: Pastoral Responses to the Problem of Evil (Grand Rapids, Michigan: W.B. Eerdmans, 2007), 224-225.

98 such a relationship between two persons of such enfeebled intellect must be counted as compelling testimony to the essentially human character of even the most retarded (sic) among us.”49

McVilly’s research into friendship and adults with intellectual disability notes however that there is a paucity of literature to inform an understanding of their aspirations, priorities and needs.

The apparent neglect of the views of people with intellectual disability by policy makers and service providers could, in part at least, be attributed to the paucity of research focusing on the views and aspirations of people with intellectual disability themselves.50

He notes some evidence that this problem is gradually being addressed, highlighting both a growing emphasis on the importance of accountability in the research process to people with disability and the growth of both participatory research and qualitative research paradigms.51 He cites studies which have sought to understand friendship amongst adults with intellectual disability and more widely in the community. These perspectives have been drawn from third party perspectives, namely family members and staff. In summary, the authors of those studies conclude that there is a need to understand the dynamics of interpersonal relationships (the role of individual personality, self-esteem, disposable income, opportunities) in making, developing and maintaining relationships.52 McVilly concludes that these dynamics:

… emphasize the importance of services developing an understanding of the opinions and aspirations of people with disability, especially with respect to their social life and their pursuit of meaningful and rewarding interpersonal relationships. In particular, it would appear important for families and service providers to understand if and how people with intellectual disability experience the absence of meaningful and rewarding interpersonal relationships in terms of loneliness.53

49 C. MacAndrew and R. Edgerton, “On the Possibility of Friendship,” American Journal on Mental Deficiency 70, (1966): 612-621. 50 McVilly, ““I Get by With a Little Help From my Friends,’” 50. 51 McVilly, ““I Get by With a Little Help From my Friends,’” 50. 52 McVilly, ““I Get by With a Little Help From my Friends,’” 83-97. 53 McVilly, ““I Get by With a Little Help From my Friends,’” 97.

99 McVilly et al reported on the final phase of a larger study investigating friendship experiences and aspirations of adults with intellectual disability. By use of qualitative and quantitative methods, including focus groups and an expert group, the responses of people confirmed that issues pertaining to friendship were among the most important concerns in their lives.54

3.6 Research projects investigating spirituality of people with intellectual disability

This section focuses on the handful of known research projects which have sought to learn about the role of spirituality in the lives of people with intellectual disability, as experienced and described by themselves. The importance of friendship emerges strongly. This literature emerged over the past 15 years and is integral to the current research because it represents first-hand accounts where people are consulted directly about their experiences. The current research use these foundational studies in two ways: (i) they provide a body of material which informs methodology and ethical approaches, and (ii) they offer a preliminary collection of accounts and observations which provide a basis to compare and contrast the findings of the current research.

3.6.1 Learning Disabilities Foundation (UK) research projects

In 2000 the Shirley Foundation in the United Kingdom, in conjunction with the Learning Disabilities Foundation, released a report authored by Swinton exploring the role of spirituality in the lives of people with learning disabilities. As mentioned previously (Section 2.4.1), this report provided the six themes for the literature review.55

The report was informed by the voices of people with intellectual disability, their carers and three service providers. For the purposes of this thesis we will focus only on the accounts of people with intellectual disability from that report.

54 Keith R. McVilly “et al.” “Self-Advocates Have the Last Say on Friendship,” Disability & Society 21, no. 7 (December 2006): 702-705. 55 Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities.

100 Using open-ended, semi-structured interviews with three groups of people with intellectual disability, the report outlines the predominant themes that emerged in response to three questions:

(i) What is important in your life?

(ii) Do you think there is a God or a higher power?

(iii) What does God do for you?

A summary of the conversations and responses to these three questions now follows.

(i) What is important in your life?

The most prominent theme indicated the importance of personal relationships. Friends and family ranked most importantly in their lives and provided meaning, value and hope. A number of respondents also referred to the importance of having a home, a belonging-place where they could offer hospitality to their friends:

“Where I live … I like to go home … good to have a place which was your own … somewhere you could take your friends and do what you want to do without others breathing down your neck.”

The quest for security and friendship that was apparent in the lives of those within the groups reflected a basic spiritual need, and indeed a quest which is fundamental to being human.

The second observation from the personal perspectives was that the issue of unresolved grief, identified as a more overtly spiritual need, was evident in the responses of a number of people. With bereavement or loss of family and friends, many respondents became upset and it became apparent that the opportunity to talk about such matters had not occurred. Swinton conjectured that spiritual needs related to unresolved grief have been assumed by carers and family not to exist, and that this may well be an area that needs to be seriously addressed. The section below quotes actual participants as well as Swinton to reflect the empowering aspect of this study.

101 (ii) Do you think that there is a God or a higher power?

Almost without exception this question was answered in the affirmative. For some the idea of God was expressed in overtly Christian language:

“When I go to church it helps me to get to know God. I meet him in church and I sing about him and pray.”

For others the idea of God was expressed in broad philosophical terms:

“God is an entity. We don’t know what it is and we don’t know for certain if it exists … We need to be very careful what we do and how we behave, how we look after our planet … God kinda guides all that.”

Swinton notes that in both perspectives interviewees referred to God in “non- supernatural terms”:

People tended to refer to God in human-like terms as “a friend”, me mate”, “a good man”, “the gaffer” etc. In other words, God was drawn into their circle of friends and understood and treated in a similar way to the ways in which they understood, treated and dealt with their day to day relationships. In this sense God became a natural extension of their everyday social relationships.

(iii) What does God do for you?

An overriding theme in the responses to this question was that God is an ever-present source of comfort, security, protection and hope, providing a framework of meaning for people to make sense of the things that happen to them as well as their relationships with those close to them:

“God helps you understand why things go wrong.” “Gives you something to look forward to.” “Gives you friends.” “Looks after my family when they are sick.”

For some people involvement with Christian communities was important and in the main people described religious communities as being supportive in their expression of spirituality, giving rise to their sense of belonging and self-esteem. However, not everyone’s experiences had been positive. An underlying theme was the tendency of religious communities not to take seriously the reality of the spiritual lives of people

102 with intellectual disability, leading to exclusion and embarrassment. According to one interviewee:

“Churches need to work out how we can work with people with learning disabilities to enable them to worship and to be integrated into the church family … It’s anybody who is different that people have trouble with. It’s if you are black, yellow, fat … it’s all the same – difference. We’re just human beings, we just want the same as anyone else. We have just as much to offer.”

In conclusion, Swinton acknowledges this report is indicative and only really scratches the surface of a huge area, hinting at many possible avenues for future research:

Spirituality relates to the structures of meaning, hope and value which give life its rich texture … To omit this dimension is to omit something fundamental to genuinely person-centred, humanising care. The data presented within this report highlights both the significance of spirituality for the well-being of people with learning disabilities, and the significant difficulties that are involved in making spiritual theory into effective spiritual practice … the findings of the report suggest it is not an option for carers to incorporate this dimension into their practice.56

Swinton’s pioneering and unpublished report was subsequently published in 2001 as A Space to Listen.57

3.6.2 ‘Space to Listen’ prompted two projects

A Space to Listen (2.4.2 (iii)) acted as a springboard for the Foundation for Learning Disabilities’ two-year research program comprising two projects related to the current research. That research was also ground breaking in its use of participatory research, an approach which puts:

The perspectives and experiences of people labelled mentally retarded (sic) must provide a starting point for all research and inquiries into the study of mental retardation (sic).58

56 Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities. 57 Swinton, A Space to Listen. 58 Steve J. Taylor, “Disability Studies and Mental Retardation,” Disability Studies Quarterly 16, no.3 (1996): 4.

103 The first project developed resources and a good practice guide for services to meet the religious needs of people with intellectual disability. These were developed in collaboration with people with intellectual disability who informed service providers of their needs.59

The second project undertook 19 interviews across the United Kingdom (UK):

• Six individual interviews with people with intellectual disability.

• Four interviews with people with high support needs.

• Nine interviews with people with intellectual disability and their carers.

These interviews used seven questions to explore the dimensions of human experience recognised as spiritual, and to examine what that meant for different individuals. The questions provided the interview template for the current research project, and will be outlined in detail when discussing the Research Design.

A series of three publications arose from these interviews. The principal one, Why are we here? Meeting the spiritual needs of people with learning disabilities concluded that “relationship with self, God and others lay at the heart of their understanding of spirituality.”60 Two accompanying information booklets, both in Easy English, raised awareness about meeting spiritual needs. The first was published for people with intellectual disability and titled What is important for you? The second, No box to tick, was aimed at carers and support staff.61

An overview of themes detailed in the first booklet noted above highlights a number of key factors.62

59 Chris Hatton “et al.” What About Faith? A Good Practice Guide for Services on Meeting the Religious Needs of People with Learning Disabilities (London: The Foundation for People with Learning Disabilities, 2004). 60 John Swinton, and Elaine Powrie, Why are we here? Meeting the Spiritual Needs of People with Learning Disabilities (London: The Foundation for People with Learning Disabilities, 2004), 21. 61 What is Important for you? and Why are we Here? are early examples of reports produced in an Accessible Summary format. In Australia it is known as Easy English. The format requires text in large font, modified language for readers with intellectual disability, and use of pictograms. 62 Swinton and Powrie, Why are we Here? 16-22.

104 • An experience or relationship which offers value. Spirituality was understood as a ‘specialness’ that emerged from connectedness to God and to others; a connectedness that took on particular poignancy in times of struggle.

• A sense of belonging. In its widest sense, spirituality is closely related to a sense of belonging and is something people wanted promoted amongst their communities.

• A hidden personal value. Spirituality was understood in terms of a code or set of values which people felt they should live by; related to being a better, kinder and more compassionate person.

• Enabling altruism. There was a link between the transcendence of a God figure and the spirituality revealed in human relationships. What goes on at the mundane level of human relationships is deeply spiritually significant.

• Awe and wonder. The general awe, wonder and mystery of the world moved a number of people to reflect on the meaning of life and their reasons for being alive.

• A sense of responsibility for the wider world. Concern about conflict and world peace was raised in all sets of interviews.

• Being connected. A key theme was a sense of connectedness, expressed implicitly and explicitly. People treasured particular objects and memories that were symbolic of friendship or relationships. Friendship was the most important thing in their lives and even indicated as a “primary spiritual relationship”:

Friendship with God, others and with oneself was a primary source of spiritual fulfilment for many of the participants. It was in and through a person’s friendships that people seemed to discover who they were, why they were here and what hope there may be for the future. Friendship functioned as a primary spiritual relationship. Friendships were a vital source of connection, social inclusion and a sense of belonging: an experience of trust and hopeful possibilities.63

63 Swinton and Powrie, Why are we Here? 23.

105 These themes provided, for the first time in the literature, a clear outline of the aspirations and perceptions of spirituality, as recounted by adults with intellectual disability. I suspect that most people, regardless of disability, would also align their spirituality to a greater or lesser degree with some or all of these themes but this very point serves to challenge the tendency to exclude or marginalise. Why would we assume otherwise? What is distinctive, however, is the emphasis placed on friendship as the most important part of their lives. Might connectedness with God and others, via friendship, be more pronounced in this cohort on account of loneliness? The research under consideration, with a different cohort of 14 people, but using the same questions, sought to investigate and seek validation of the significance of friendship and connectedness.

Whilst connection was integral to people’s spirituality, disconnection and subsequent spiritual distress was also revealed as people spoke of grief and loss in relation to bereavement of loved ones. People’s experiences of grief were accompanied by spiritual distress, and they were often left to wrestle with it alone because this topic remained a taboo subject for many carers and support workers.64

3.6.3 ‘Everybody has a Story’

In 2008 the Kairos Forum published the results of its research project also based on participatory action research. People with intellectual disability were viewed as co- researchers, in itself a significant and empowering shift. There were six focus groups comprising 8 –10 adults with intellectual disability who met fortnightly over a 12 week period to explore six questions.65

Who am I?

Why am I alive?

What can I do?

64 Swinton and Powrie, Why are we Here? 34. 65 The Kairos Forum for people with Intellectual or Cognitive Disabilities (KFICD), emanated from the University of Aberdeen, Scotland, and seeks to highlight and respond to the spiritual and religious needs of people with disability. It facilitates the crafting and empowerment of ‘Communities of Belonging’, both within religious and secular settings. www.thekairosforum.com accessed 2 June, 2017.

106 Who do I share my life with?

Where can I find love?

Where can I find God?

This project, undertaken in the UK and Ireland, aimed to develop new practical knowledge and understanding of the role of religion and spirituality in the lives of those with intellectual disability, and to develop training and educational materials for religious communities moving towards more inclusive practice.66

Insights and themes articulated by the co-researchers included:

Love of friends, family and other people; dislike of injustice and violence; a clear sense of altruism and concern for others and the state of the world; the need to belong to something, someone or somewhere; a desire, indeed an imperative, to have their story acknowledged, respected and responded to; responding to change and the opportunities or challenges that came with that: in the areas of death of loved ones, personal bodily changes, in the environment and in the routines of life.67

These themes broadly align with those of Swinton’s initial research, particularly the desire for connectedness, altruism and care about others, including concern for issues and matters in the wider world. These themes challenge historical charitable attitudes which have implied people with intellectual disability are passive recipients without powers of engagement and reciprocity, essential ingredients for forming and sustaining friendships.

3.6.4 ‘The spiritual lives of people with profound and complex learning disabilities’

In 2010, also using a participatory action research (PAR) methodology, Swinton et al undertook a pioneering study with seven people who had profound intellectual

66 Cristina Gangemi “et al.”, Everybody Has a Story. Enabling Communities to meet People with Intellectual Disabilities and Respond Effectively to their Expressed Spiritual and Religious Needs and Hopes: A Participatory Action Research Approach (Kairos Forum: University of Aberdeen, 2010). 67 Gangemi et al., Everybody Has a Story, 46-49.

107 disability.68 The study included those closest to them. The community of family, carers, volunteers and staff involved in the individual’s life all contributed their knowledge and experience of the person. In communications with this circle of support and the individual, a range of verbal and non-verbal communications was employed. The tool used by the research team to develop an overall understanding of the person’s life and the role of spirituality and religion was Making Action Plans (MAPS).69 A ‘Spiritual Map’ was developed with a range of goals and an action plan to achieve them.

Once all the MAPS had been completed, analysis of the data pointed to four important themes or concepts about the participant’s spiritual life, as identified by them and the circle of support.70

Understandings of practical spirituality. This theme referred to recognition by families or carers that the person was ‘spiritual’. Whilst people had difficulty putting the meaning of this into words there was a sense sometimes that they were ‘better’ people on account of their presence and vulnerability. Evidence of spirituality was also claimed in instances when people were ‘calmed’ in sacred places, and displays of prayer by some people were also another sign.

Inclusion and belonging. This theme discussed issues of exclusion faced by people with profound intellectual disability when participating in religious services such as transport, need for supportive carers, and openness by congregations. Positive examples were cited in which communities had made changes to be inclusive, and references to people being missed when they were not present.

Personal leadership. Without the personal commitment and leadership shown by the main carers, isolation, boredom and lack of recognition would have resulted. Exceptional carers were deemed to demonstrate spiritual qualities in that they were

68 John Swinton, Susanna Baines, and Harriet Mowat, Understanding the Spiritual Lives of People with Profound and Complex Learning Disabilities: A Community Oriented Action Research Approach (University of Aberdeen, 2010). An unpublished report but referenced here with permission of the Principal Investigator, Prof John Swinton. 69 MAPS is a planning process for people and organisations that begins with a story – the person’s history, and builds a plan to move in the direction of their aspirations and hopes. A portrait of the person’s gifts and talents and uncertainties unfolds. Originating in the 'disability' sector, its applications cover the full spectrum of life situations. 70 Swinton, Baines and Mowat, Understanding the Spiritual Lives of People with Profound and Complex Learning Disabilities, 85-106.

108 the ones able to build and sustain a realistic rapport whilst recognising reciprocity in the relationship. Such accepting relationships are characterised by non-disabled people genuinely seeing people with intellectual disability as ‘one of us’, rather than being shameful, regarded “as one that is long standing and characterised by closeness and affection … difference is not denied but neither does it bring disgrace.71

Friendship. All families and carers had longings for the person they cared for to have friends beyond the ‘caring circle.’ It was noted that maintaining and developing friendships became more difficult as people entered young adulthood. In fact, it was only through endeavours of these exceptional carers that any friendships continued. In discussing the nature and meaning of friendship Swinton et al raise the question of friendship’s meaning by asking if a person “can have a friendship with someone who does not reciprocate or reciprocates in unusual ways?”72

This is an important question for how faith communities respond and will be explored in Chapter 9 when discussing the cult of normalcy and love of the stranger, filoxenia.

3.6.5 ‘To belong I need to be missed’

On the Australian scene, the only known peer-reviewed research in the field of disability and inclusion in faith communities, and which directly sought the views of people with disability and leaders of faith communities, emerged in 2010. The interviews sought people’s responses to a number of questions which explored their understanding and experience of inclusion within faith communities. Obstacles to participation were also explored. Whilst this research did not have a specific focus on people with intellectual disability, the Reference Group guiding the project included a Jewish person who self-identified with intellectual disability. A total of 18 interviews were conducted, revealing four broad clusters of responses.73

71 Robert Bogdan and Steve Taylor, “Relationships With Severely Disabled People: The Social Construction of Humanness,” Social Problems 36, no 3 (April, 1989): 137. 72 Swinton, Baines and Mowat, Understanding the Spiritual Lives of People with Profound and Complex Learning Disabilities, 108. 73 Calder, “To Belong,” 262-286.

109 (i) Understandings, perceptions and experiences of inclusion

There was recognition that sometimes people with intellectual disability may also have mobility needs. These need to be met in addition to:

the need for suitable equipment and technology for people with sensory impairments, along with consideration given to adaptations of the presentation and style of worship … these are the material precursors for an inclusion spoken of by others in which they have a sense of belonging or ‘being at home’.74

(ii) Obstacles and suggested strategies to increase participation

A major concern expressed was about being patronised, a victim of charitable intent, and have assumptions made about personhood or capabilities. Protectiveness by the family could inhibit participation. Worship services needed more inclusive characteristics (e.g. shorter in length, more sensory engagement, less ‘wordy’, valued roles of involvement including leadership), and more acceptance is needed of loud or ‘inappropriate’ noise in a worship context. All these were summed up:

“When you have a disability you have to make a decision to include yourself – got to invite yourself to the party – need to develop your courage muscle!”75

(iii) People’s interpretations of their disability and the particular teachings/beliefs of that religion/faith community

There was a range of understandings and beliefs about existential questions and interpretation of sacred texts. The issues and questions that summarised this cluster are helpful for this current research:

What are the particular understandings about faith and people with disabilities? Is this important and if so, why? What is helpful and what is not for people with disabilities?76

74 Calder, “To Belong,” 278. 75 Calder, “To Belong,” 274. 76 Calder, “To Belong,” 281.

110 (iv) Role of leadership as a catalyst to promote positive change

One person with an intellectual disability recounted an experience of being a serving member of his congregation’s decision-making Council. Anecdotally this is a rare occurrence in faith communities. The report suggested that people with disability are the ‘experts’ on their needs and that leadership roles of all descriptions need to be more proactively pursued.77

The results of this research were also produced in an Easy English version for people with intellectual disability to more readily access the information. With use of pictograms and large text this version summarised the three key findings of the research:

(i) You need to get into the place.

(ii) You need to feel welcome.

(iii) You need to have a say about your participation in the faith community.78

In the Australian context, newly constructed places of worship and modifications to existing dwellings are governed by building codes.79 Such codes meet the needs of people with physical disability, people with mobility issues on account of ageing, and families with young children. Whilst improvements are apparent in recent decades, vigilance is required to avoid discrimination. However, a welcoming response and the right to have a say about participation in the faith community are not determined by legal obligation, they depend on particular communities or congregations. Factors which influence this include having advocates within the community, an existing culture of warmth and welcome of the stranger, theological understandings and a commitment to pastoral care and friendship.

77 Calder, “To Belong,” 282. 78 Andy Calder, To Belong I Need to be Missed: What Helps People with a Disability join Faith Communities? Easy English version (Synod of Victoria and Tasmania: The Uniting Church in Australia, 2010), 6-10. 79 Australian Standards AS 1428 specifies the design requirements for new building work, as required by the Building Code of Australia (BCA) and the Disability (Access to Premises – Buildings) Standards (Premises Standards), to provide access for people with disabilities.

111 Chapter 9 will discuss in detail the vital role of congregations in developing friendship with adults with intellectual disability. Brueggemann’s schema of critical and energising, a new orientation80 will be proposed as a framework in which embrace rather than exclusion becomes the hope and expectation.

3.7 Conclusion

This chapter has focused on Spirituality and Friendship, a major theme of the six identified by Swinton in the literature review in Chapter 2. The studies described above sought to learn more about the importance and meaning ascribed to spirituality by people with intellectual disability. These studies are important for the current research as they are the only ones known to have specifically used participant action research (PAR) to obtain such knowledge. The current study focussed on adults with intellectual disability is the first of its kind in Australia, and builds on the foundations evaluated above. It is not only informed by these previous studies but also will hopefully contribute to this growing body of literature. The next chapter locates the research and researcher in the field of practical theology, and Chapter 5 will detail the research methodology and methods within the qualitative research paradigm.

The task of constructing and describing frameworks of complex and interlocking relationships in the field of qualitative research is not easy to describe. Norman Denzin and Yvonna Lincoln’s early work used the image of a bricoleur, a maker of quilts:

… the interpretive bricoleur produces a bricolage – that is, a pieced- together set of representations that are fitted to the specifics of a complex situation.81

In borrowing this term, I very much liken it to the task at hand. The purpose is to create a cohesive whole that clarifies the theoretical and philosophical underpinnings of the chosen models and methods of practical theology and qualitative research, and their application to the research questions. Denzin and Lincoln, in describing texts that are

80 Brueggemann, Spirituality of the Psalms, 9-15. 81 Norman K. Denzin and Yvonna S. Lincoln, “Introduction. The Discipline and Practice of Qualitative Research,” in Handbook of Qualitative Research, eds. Norman K. Denzin and Yvonna S. Lincoln (Thousand Oaks, California: Sage Publications, 2000), 4.

112 based on quilt-making, describe it as a bringing together of different voices, perspectives, points of view and angles of vision that move:

“from the personal to the political, the local to the historical and the cultural. These are dialogical texts. They presume an active audience. They create give-and-take between reader and writer.”82

82 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 5.

113 Chapter 4: Research Framework – Practical Theology

4.1 Introduction

This chapter locates the researcher as a practical theologian, and provides understandings of practical theology’s principles and background, especially that of praxis, and its application to the research questions. Chapters 4 and 5 also provide an opportunity to deepen and develop a clearer understanding of the relationship between practical theology and qualitative research methodology and methods (Chapter 5). To reiterate the research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

This chapter will focus on the ‘world’ of practical theology and theological reflection, focussing on the theological reflection models and approaches framing the research. Whitehead and Whitehead’s model and method of theological reflection will provide the meta-framework,1 whilst Joe Holland and Peter Henriot’s emphasis on praxis and social analysis provides a supplementary and incisive approach which privileges marginal perspectives and links faith with justice.2 The relationship of practical theology to action research will be considered, providing a bridge to discussion of chosen qualitative research methodologies and methods in Chapter 5, particularly participatory action research (PAR).

I note at this point that Chapter 5 will develop the theoretical underpinnings of qualitative action research. Carter and Little’s model will provide the framework for the planning, implementing, and evaluation of this qualitative research.3 Their model has

1 James D. Whitehead and Evelyn E. Whitehead, Method in Ministry: Theological Reflection and Christian Ministry (New York: Seabury, 1983), 11-13. 2 Joe Holland and Peter Henriot, Social Analysis: Linking Faith and Justice (New York: Obis Books, 1983). 3 Stacy M. Carter and Miles Little, “Justifying Knowledge, Justifying Method, Taking Action: Epistemologies, Methodologies, and Methods in Qualitative Research,” Qualitative Health Research 17, no. 10 (December 2007): 1316-1328.

114 three fundamental research facets: epistemology, methodology and methods.4 Chapter 5 will also include discussion as to how pastoral theology can use qualitative research methods to ensure that Christian practice is in correspondence with God’s self-communication. Three things are required for this: hospitality, conversion and critical faithfulness.5

These two dimensions, practical theology and qualitative research have nuanced and sophisticated bodies of knowledge. Chapters 4-5 seek to establish a coherency between these dimensions as required for the research project and to provide a rationale for the selections made from the array of research methodologies available.

4.2 Practical theology

4.2.1 Principles and purposes of practical theology

Within the ambit of theological studies, practical theology contributes on the one hand to the whole theological enterprise, whilst also offering a particular way of doing theology that can inform and influence all theology as an essentially practical activity.6 Practical theology is the enterprise which reflects theologically on the action of the Church both in its own life and in the life of society. Its raw materials are the actions of faith rather than the language of faith.7 Herbert Anderson is succinct and pointed with his summary: “Practical theology is about creating a framework for fashioning ministry practices that liberate human persons and communities.”8

John Swinton and Harriet Mowat describe practical theology as:

… critical, theological reflection on the practices of the Church as they interact with the practices of the world, with a view to ensuring and

4 Carter and Little, “Justifying Knowledge, Justifying Method,” 1316-1328. 5 John Swinton and Harriet Mowat, Practical Theology and Qualitative Research (London: SCM Press, 2007), 91-94. 6 Paul Ballard and John Pritchard, Practical Theology in Action: Christian Thinking in the Service of Church and Society (London: SPCK, 1996), 73. 7 Ballard and Pritchard, Practical Theology in Action, 119. 8 Herbert Anderson, “The Future of Practical Theology” (paper presented to the Victorian Association for Theological Field Education, Melbourne, Australia, 2000), 2.

115 enabling faithful participation in God’s redemptive practices in, to and for the world.9

They highlight four key points as integral, each of which has direct application to this research project. First, practical theological inquiry is critical because it is prepared to challenge accepted assumptions and practices. Second, it is theological reflection in that theology is the primary source of knowledge which guides and provides the hermeneutical framework within which practical theology carries out its task. Third, the locus of investigation is not simply the practices of the Church and experiences of Christians. The theological reflection that is practical theology also embraces the practices of the world and it is the interplay between these practices which the practical theologian explores. Fourth, the goal and end-point of practical theology is to ensure, encourage and enable faithful participation in the continuing gospel narrative.10

Don Browning strongly asserts that practical theology is not a sub-specialty of theology. On the contrary, he claims that Christian theology is practical through and through, and at its very heart. In his seminal text, Browning suggests that theology is fundamental practical theology with four sub-movements: descriptive theology, historical theology, systematic theology and strategic practical theology.11 This research project locates itself within the strategic practical theology sub-movement because it seeks to change perceptions and actions in pursuing a better quality of life for adults with intellectual disability and the communities in which they live.

In reviewing Browning’s summary of the most important paradigm shifts in practical theology formation, I am encouraged in my own research as each of the following, to different degrees, will be reflected in this endeavour:

• A shift away from the clerical paradigm and exclusive concentration on the internal life of the church towards a greater focus on the life of the church in the world;

9 Swinton and Mowat, Practical Theology and Qualitative Research, 6. 10 Swinton and Mowat, Practical Theology and Qualitative Research, 6-10. 11 Don S. Browning, A Fundamental Practical Theology: Descriptive and Strategic Proposals (Minneapolis: Fortress Press, 1996), 7-8.

116 • Emphasis on practical theology entering into critical dialogue with other religions and various forms of secular knowledge within a pluralistic society;

• This critical dialogue should emphasise the importance of theological ethics and moral philosophy to assist in making choices about social and individual transformation;

• An affirmation of the priority of practice over theory through praxis, where theory that is implicit is made explicit through critical reflection;

• An emphasis on the role of social sciences as an interdisciplinary partner in practical theological methodology;

• Practical theology is moving towards action focussed on political liberation – reflecting liberation theology’s shift from saying towards doing.12

For Helen Cameron, a key element of Theological Action Research (TAR) is the overlap ‘between speech acts and performed practice’ of an interactive performance:

These belong together. Words without performative actions are hollow; actions without the words that convey purpose are empty. But words and action do not simply exist side by side; they co-inhere.13

The principles and perspectives outlined above by Swinton and Mowat, Browning and Cameron, are reflected in, and underpin the modus operandi of this practical theology research. In the theological interpretation of people’s experiences and understandings of their spirituality, the desire and call for action, based on lived experience, is situated in both faith and state contexts.

4.2.2 Interaction of text and understanding

Whilst the proponents above establish the ground on which the research sits, Nigel Rooms claims that practical theology has not always engaged with scripture in its depth and totality. This situation has been remedied in recent times by significant publications from practical theologians. With acknowledgement to several

12 Don S. Browning, introduction to Practical Theology, ed. Don S. Browning (San Francisco: Harper and Row, 1983), 10-17. 13 Helen Cameron “et al.” Talking about God in Practice: Theological Action Research and Practical Theology (London: SCM Press, 2010), 14.

117 philosophers of knowledge – Hegel, Marx, Habermas and Gadamer, Rooms draws attention to the recent recovery of praxis knowing and learning, and the use of phronesis, or practical wisdom, that accompanies it. In the development of phronesis, from the interaction of text and understanding, both particular and universal, there is no fixed character to either element.14 Rooms states that all

… good theology is learning theology, theology in process – practical theology or theology that is reflective, in dialogue with experience. It is based in phronesis, and concerned with developing practical Christian wisdom for living – for answering the key question of our day or any day: how then shall we live?15

This last open-ended question suggests an inquiry and invitation I could not resist! In investigating the experience and understandings of spirituality that a cohort of adults with intellectual disability hold, a partnership was forged with a community-based self- advocacy network concerned about people’s rights and quality of life. As social action research, the strategy of engagement with that network was collaborative and reflected participatory praxis. Questions were informally discussed with the research participants, and their responses reflected on in the light of feedback from other self- advocates with intellectual disability, policy-makers and the revelation of scripture.

Theological reflection is the art of making theology connect with life and ministry so that the gospel is enlivened. Theological reflection is at the heart of the nature and task of practical theology.16

4.2.3 Theological reflection – understandings and purpose

The literature of theological reflection universally acclaims that it is a three-fold engagement with: the lived experience of people’s circumstances, the beliefs and assumptions of the Christian tradition, both these factors in relationship to the contemporary situation, and thirdly, culture. Writers place different emphases on these three, with Pattison referring to it as a ‘critical conversation’ in which each modifies

14 Nigel Rooms, “Paul as Practical Theologian: Phronesis in Philippians,” Practical Theology 5, no. 1 (2012): 83. 15 Rooms, “Paul as Practical Theologian,” 81-84. 16 Ballard and Pritchard, Practical Theology in Action, 118.

118 and learns from the others in a dynamic interaction.17 Such an enterprise is designed to encourage theological reflection to be an interrogative and inquiring activity rather than a resolute handing down of truths from the past.

The lived experience of one’s life is shaped by personal and community relationships, religious tradition, culture, politics, work, leisure and the multiplicity of feelings and thoughts that constitute being human. Experience is an essential source of wisdom for it is here we find God’s presence and Spirit – not only in moments of tragedy and crisis, joy and exaltation, but also in the mundane routine of daily life. It is this experience that we bring to theological reflection.18 The purpose of theological reflection is captured well by M.E. Sheehan:

Theological reflection assumes the involvement of God in human history, which mediates his prophetic and healing presence in word and sacrament. But the experience and recognition of God in history requires interpretation which includes both explanation and understanding as well as commitment to responsible action toward releasing the liberative love of God that constitutes revelation.19

Such theological reflection, with explanation and understanding, with a commitment to action, requires an interpretive process and for the practical theologian, this is undertaken by engaging with hermeneutics.

4.2.4 Application of hermeneutics to practical theology

Hermeneutics is the study of the process of interpretation. The word is derived from the messenger of the gods, Hermes, in Greek mythology, who had to explain the plans, thoughts and decisions of the gods to human beings. Hermeneutics engages “with explanation, with speech, with translation, with communicating a message, with interpreting something to people who want to hear and understand.”20

17 Stephen Pattison, “Some Straw for the Bricks: A Basic Introduction to Theological Reflection,” in Contact 99 (1989): 4-5. 18 John E. Paver, Theological Reflection and Education for Ministry: The Search for Integration in Theology (Hampshire: Ashgate Publishing, 2006), 41-43. 19 M.E. Sheehan, “Theological Reflection on Theory-Praxis Integration,” Pastoral Sciences 3 (1984): 31. 20 Dirk Smit, “Biblical Hermeneutics: The first 19 centuries,” in Initiation into Theology: The Rich Variety of Theology and Hermeneutics, eds. S. Maimela and A. Kӧnig (Pretoria: Van Schaik Publishers, 1998), 275-276.

119 Ballard and Pritchard describe their understanding of hermeneutics in terms of people interacting with each other and seeking to understand and ‘read’ who they each are. The experiences of each person are so different, and while there may be things in common, there is much discrepancy:

To use hermeneutical language, these ‘horizons’ have to be merged through a process of understanding and empathy so that there can be a meaningful dialogue. Hermeneutics asks what is happening to both (or more) parties at the different levels of dialogue: cultural, historical, social, psychological, metaphysical, ethical and so forth.21

In their discussion of praxis, which comes out of the Marxist tradition, Ballard and Pritchard state that praxis is more than practice, for it recognises that no human activity is value-free. To understand any issue or situation, it needs to be analysed in depth, and to do so, they cite Habermas’ ‘hermeneutic (interpretive tool) of suspicion’ which encourages questions such as: What is really going on? Who controls? Who gains? Who loses? Who suffers?22 Such questions both prompt and guide this research as I seek understanding and action to enhance individual and communal life.

In subjecting the research questions to an analytical critique, including cultural, historical and social factors, and perspective of the analyst, it is also subjected to Christian reflection to recover the basic gospel imperative:

This provides the attitude which should inform the critical praxis that follows the analysis. This is to be found in the biblical perspective on the situation: the option for the poor and the struggle for liberation. Out of the juxtaposition of analysis and gospel emerges the new praxis, which itself has to be subject to the same process.23

The hermeneutical approach undertaken within both pastoral and practical theology seeks to understand and interpret the intention of God’s salvific acts within different human and social contexts. Doing theology takes us behind the scenes “to assess the intention of human acts to transform our world in terms of the basic ethical principle,

21 Ballard and Pritchard, Practical Theology in Action, 64. 22 Ballard and Pritchard, Practical Theology in Action, 66. 23 Ballard and Pritchard, Practical Theology in Action, 66.

120 love” and the purpose of “different methods of discourse, communication and dialogue [is] … to instil meaning in life.24

At the heart of all models and contemporary perspectives about practical theology, assert Ballard and Pritchard, 25 is the pastoral cycle, with differing emphases by different theorists. Such cycles provide the method to analyse and interpret and I find myself especially drawn to Holland and Henriots’ ‘pastoral circle’ in which social analysis is prominent (to be described in 4.4.4).26 This recognizes that individuals are inseparably connected to complex webs of relationships, that structures cannot be ignored and may indeed be perpetuating a range of injustices leading to profound suffering. Social analysis’ importance, and its relationship with praxis, will become more evident in the following sections as I outline two major influences on my personal practice.

4.3 Expressions of practical theology that influence this research

In leading the discussion towards selection of the models and approaches of theological reflection, I will reflect on two expressions of practical theology which have influenced this research. Practical theology has spawned myriad expressions, with many sources and emphases contributing to its development: including Latin American liberation theology, feminist theology, clinical pastoral education (CPE), spiritual renewal and ecumenical dialogue.27 CPE, briefly mentioned in Chapter 1, and liberation theology have been formative with direct application to this research.

4.3.1 Clinical Pastoral Education (CPE)

CPE contexts may be hospitals, corporations, prisons, military institutions, schools, churches, synagogues, and local communities. With its emphasis on ‘the

24 Daniel Louw, A Pastoral Hermeneutics of Care and Encounter: A Theological Design for a Basic Theory, Anthropology, Method and Therapy (Wellington, South Africa: Lux. Verbi, 2000), 106. 25 Ballard and Pritchard, Practical Theology in Action, 77-85. 26 Joe Holland and Peter Henriot, Social Analysis: Linking Faith and Justice (New York: Obis Books, 1983). 27 Robert Kinast, What Are They Saying About Theological Reflection? (Mahwah: Paulist Press, 2000), 1.

121 living human document’28 and development of the student’s pastoral identity, empathic listening lies at the core of CPE. But to whom do we listen? In applying this question to the research, it concerns the nature of ‘the other’, that is, other people who are vulnerable and experiencing some form of suffering. Attention in the form of empathic listening transforms the listener as well as the one listened to. In its study of lived experience such reflexive listening is the key ingredient for phenomenological research as it attempts to gain insights about people’s experiences of the world pre- reflectively without trying to find theories to explain it.29

My practise as a CPE Supervisor has also been influenced by the importance of social analysis to complement the concerns of the individual. Helmut Weiss and Klaus Temme state that pastoral care and counselling today can neither be reflected upon nor carried out apart from international, intercultural and interfaith networks. The authors briefly trace the origins of the Western practice of CPE, noting the significant influence of Carl Rogers, Seward Hiltner and Howard Clinebell dating from the 1950s and 60s. The strong tie to psychology and psychotherapy is clearly noted, which was not without critique.

Pastoral care and counselling cannot deal with psychological conflicts or individual suffering alone, but it must take up the problems of poverty, of economic globalisation, the decline of traditional cultural values, and the fact that new technologies are entering into each and every corner of the world and thus into our everyday human lives. What models may prove to be successful in future?30

In pastoral care and counselling conversations critically examine responses to individual loss and suffering. In my supervisory practice I emphasise, via a process of social analysis, the importance of the link, the ‘personal-is-political’,31 highlighting that pastoral care is not exclusively the preserve of a 1:1 encounter. Because people are inextricably linked to other people within social, religious, political, cultural and economic systems, responses which challenge negative impacts on individuals and

28 The term ‘living human document’ was coined by Anton Boisen, founder of the CPE movement. 29 van Manen, Researching Lived Experience, 9. 30 Helmut Weiss and Klaus Temme, eds., Treasure in Earthen Vessels: Intercultural Perspectives on Pastoral Care Facing Fragility and Destruction (Piscataway, NJ: Transaction Publishers, 2009), 13. 31 Rhonda Galbally, Just Passions: The Personal is Political (Melbourne, Australia: Pluto Press, 2004), xiii.

122 systems, in the pursuit of enhanced quality of life, emerge as acts of pastoral care. Benefits for one will invariably have benefits for many.

Stephen Pattison similarly challenges pastoral theology to broaden its scope from the politics of therapy and counselling, citing the importance of questioning fundamental values and assumptions, a position espoused by this research in the final chapters and as a rationale for the project:

To act as if individuals and their problems are not affected by the social order is to support the status quo and to leave social and political structures unchallenged by a kind of therapeutic quietism. In this sense, the personal is very definitely political, if only tacitly and implicitly.32

In the questioning of social order and analysis of injustice about an individual’s life experience and of others with similar experiences, such praxis, with an emphasis on social analysis, requires an interpretive process. Liberation theology provides a significant framework to analyse issues of faith and justice.

4.3.2 Liberation Theology

Liberation Theology emerged at the same time as the civil rights movement in the United States and sought to transform popular religion by making communities self- aware, and to engage in the changing of communities. It is a branch of political theory in the light of Christian faith, dealing with power, conflict and the welfare of the community. Justice is the final goal.33 Paul Sedgwick notes that the primary debate hinges around a political theory called communitarianism, that is, forms of association such as family and voluntary groups which promote community connectivity. He cites the work of Geoff Mulgan who coined the phrase, social exclusion, for those who live outside the worlds of work, education and sociability. Mulgan’s political theory suggests that the role of the state is to offer options which can bring the individual from dependence to supported independence. It is the notion of citizenship which is now central to political theory. Sedgewick asserts that:

32 Stephen Pattison, Pastoral Care and Liberation Theology (Cambridge: Cambridge University Press, 1994), 214. 33 Paul Sedgwick, “Liberation Theology and Political Theory,” in The Blackwell Reader in Pastoral and Practical Theology, eds. James Woodward and Stephen Pattison (Blackwell Publishing, 2000), 165-171.

123 Pastoral theology and practice are enriched by the study of political theory and liberation theology because they enable pastoral care to see how social obligation is carried on, and how poverty and social oppression blight human lives.34

The research under consideration recognizes that the pastoral care of individuals can never be separated from the wider social and communal factors impinging on that person’s life. People with intellectual disability universally live as socially excluded people. The impetus behind this research seeks to highlight the power and potential of spirituality, and particularly friendship, to enable the quality of life for both the individual, and the community in which that person lives, to be mutually enhanced.

Personal encounters with people who have been unjustly marginalised due to difference and ‘otherness’ have inspired me to be an ‘agent of change’. I have striven to collaborate with people directly affected by injustice, and in doing so to be a partner, a participant in such change, even through this research. Liberation theology expects, indeed demands, that involvement for change be enacted in the world and that the most enduring and authentic change comes from dialogue between scripture, culture and tradition that embrace

… the concrete daily life experiences of the people of God … It encourages us to recognise that we cannot do theology as though we lived in some abstract realm or dead corner of history – we have to be in our world.35

We must confront the fact that injustice enacted by people, also demands the redemptive response of people. Indeed research can achieve this while affirming, as Brueggemann contends, that prophetic ministry is about:

… offering an alternative perception of reality … That prophetic ministry seeks to penetrate the numbness in order to face the body of death in which we are caught. And that prophetic ministry seeks to penetrate despair so that new futures can be believed in and embraced by us all.36

34 Sedgwick, “Liberation Theology and Political Theory,” 168. 35 Lisa Sherwood and Dorothea McEwan, Introducing Feminist Theology (Sheffield: Sheffield Academic Press, 1993), 76-77. 36 Brueggemann, The Prophetic Imagination, 116-117.

124 In my pastoral practice, including voluntary and professional commitments over the past 40 years, my praxis has a consistent thread of advocating that people with disability participate as fully as possible in a range of contexts: social, leisure and religious. Maureen McBride suggests that the term ‘praxis’ was popularised in Marxist ideology and refers specifically to the transformation of economic structures. The influence of Marxist thought has assisted liberation theology in recognizing the importance of ‘praxis of faith’ which is the biblical action of ‘doing truth’:37

Praxis involves the ongoing integration of action and reflection through which political and social processes are maintained … When practical theology is engaged in praxis, it reflects on intentional action strategies which are aimed at transforming social contexts. Hence, the interest for a ‘doing theology’ in practical theology.38

Such intentionality of action and transformation of social contexts is echoed in the New Testament Letter of James, where matters of faith and works come into sharp focus. Advocacy arising from this research is strongly influenced by faith having no purpose without works: “So faith by itself, if it has no works, is dead” (James 2: 17 NRSV).

The background and development of this ’doing theology’ in practical theology, or praxis, will be discussed in the next section, as a forerunner to outlining the selected theological models and approaches for this research project.

4.3.3 Background and development of praxis

Aristotle divided knowledge into three types – theoretical, productive and practical: theoria, poiesis and praxis.

Theoria is an end in itself – the pursuit of truth for its own sake. It proceeds via episteme, knowing the good, the true and beautiful which leads to sophia, or wisdom and pure human fulfilment. Once attained, such knowledge is fixed and immutable.

37 Maureen McBride, “Praxis,” in An A-Z of Feminist Theology, eds. Lisa Isherwood and Dorothea McEwan (London: Sheffield Academic Press, 1996), 183-185. 38 Louw, A Pastoral Hermeneutics of Care and Encounter, 91.

125 Poiesis knowing enables artefacts to be manufactured, utilising creative arts. Its starting point is an idea or pattern and it proceeds via the techne or skill of the artisan or artist.

Praxis knowing for Aristotle is a means to the ordering of society and is concerned with ethical behaviour and politics – judgement and discernment. It begins with a question or situation and proceeds via phronesis or practical wisdom. This knowing, unlike theoria, leads to a cyclical hermeneutic of, “holding the universal and particular in tension while searching for and believing in the possibility of a true interpretation of every “text”.39

Thomas Groome notes that Aristotle used the term ‘praxis’ to refer to any kind of practical activity and considered it to be a source and expression of ‘conation’ or the process of moving towards activity, though as a precise term, he reserved it for public political activity:

Aristotle’s most frequent use of the term praxis was to describe reflective and purposeful human activity of any kind. Yet he used it most precisely to describe ethical conduct according to “right reason in political life”. The purpose of praxis is further praxis, not rationally certain ideas.40

Praxis is at the core of both research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

The first question sought to gain knowledge from ‘devalued’ individuals about the meaning and importance they ascribe to spirituality, in the hope that a transformation of their lives, and those of faith communities may ensue. The second question is posed with the aim of influencing social policy to recognize spirituality’s importance in the lives of people with intellectual disability. Chapter 1 outlined the historical, social and political exclusion experienced by people with intellectual disability. Chapter 10, as

39 Rooms, “Paul as Practical Theologian,” 83. 40 Thomas H. Groome, Sharing Faith: A Comprehensive Approach to and Pastoral Ministry: The Way of Shared Praxis (New York: Harper Collins, 1991), 44.

126 part of the research’s social action methodology seeks to influence social policy by highlighting key elements in Australia’s developing NDIS.

Most significantly, the analysis and consequent interpretation of interviews with the 14 self-advocates led to VALID creating a new policy document called ‘Statement of Spirituality’ (see Appendix 20).41 As the peak body for disability advocacy in Victoria, this Statement became a very important component of the research’s ongoing advocacy with the NDIA (1.4) and, as noted, will be detailed in Chapter 10.

Having discussed the formative influences, with pre-eminence accorded to praxis in relation to both goals, the following section briefly describes the nature and purpose of models and methods of theological reflection, before outlining the two chosen for this research.

4.4 Selected models and methods for this research

4.4.1 Nature and purpose of theological reflection models and methods

A model for theological reflection offers a way to structure conversation. Usually models highlight the sources of information that are important to insight and decision- making.42 Patricia Killen and John de Beer indicate the dynamic nature of these sources:

Sources are aspects of experience … Even though we separate experience into aspects to make reflection possible, the meaning of any particular event is revealed only when we attend to those aspects or sources and their mutual relationships … Sources for theology are constructs we put on experience to organise it.43

On the other hand, the method describes the process, dynamic or movement of the reflection. It outlines the stages through which the conversation proceeds. Methods

41 https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf accessed 11 December, 2018. 42 Paver, Theological Reflection and Education for Ministry, 45. 43 Patricia O. Killen and John de Beer, The Art of Theological Reflection (New York: Crossroad, 1994), 59.

127 provide a framework for theological reflection. They are maps that can guide us.44 John Mueller offers a definition that is analogous to an everyday working tool:

A method is a tool. Like a good multi-purpose screwdriver, a method improves upon what weak fingers and fragile fingernails cannot do. A method extends our abilities, improves upon our limitations, reminds us of forgotten procedures, and allows others to see how we arrived at our conclusions.45

The overarching structural framework used for the research is Whitehead and Whitehead’s three-fold model of three poles: (i) Christian Tradition, (ii) Experience of the community of faith and of the practitioner, and (iii) the Resources of the Culture.46 These three poles, or conversational partners, are complemented by its method, also three-fold, which describes a process of pastoral decision-making and action: in the move from insight to action the three stages are (i) attending (ii) assertion and (iii) decision for action.

A complementary model/approach, to be used as an incisive conversation partner, is the praxis model.47 This model is often referred to as the ‘liberation model’, in that contextual interest focuses tightly on liberation and transformation of a culture that oppresses and diminishes people. It is a model in which the central insights of theology are done not simply by providing relevant expressions of Christian faith, but also by commitment to Christian action.

In the case of this research, Holland and Henriots’ ‘pastoral circle’, with its emphasis on social analysis, will provide the foundation for discussion of selected models and approaches, both now to be outlined.

44 Paver, Theological Reflection and Education for Ministry, 45. 45 John J. Mueller, What are They Saying about Theological Method? (New Jersey: Paulist Press, 1984), 1. 46 Whitehead and Whitehead, Method in Ministry, 13-21. 47 Paver, Theological Reflection and Education for Ministry, 56.

128 4.4.2 Whitehead and Whitehead Model

4.4.2.1 Christian tradition

Whitehead and Whitehead recognise that the biblical stories have been shaped by human experience and have been subsequently reinterpreted in different ages and times. They can then offer meaning and understanding for particular pastoral concerns. In not diminishing their belief in the divine inspiration of these texts, and their place as core revelation for Christians, the Whiteheads recognize that the events of Scripture are not far removed from the concerns of contemporary life.

Theological reflection upon a particular pastoral situation (in this case, the meaning of spirituality in the lives of adults with intellectual disability) requires the researcher to befriend scripture via a creative tension between participation and criticism. Participation implies a certain familiarity and personal relationship with the text, whilst criticism refers to a more disinterested view in which the pastoral concern can be analysed. I am drawn to Whitehead and Whitehead’s claim that this tension is vital for a robust assertion and critique of this contemporary pastoral issue. Theological reflection is bound to the inherent contradictions and paradoxes of the human person, and this tension reflects such complexity.48 This model is explicitly Christian; the faith in which I locate myself. In the event interviewees speak from a different faith tradition I believe this model can accommodate that: consistency is maintained provided the same process of interpretation between experience and tradition is exercised.

4.4.2.2 Experience of faith communities and practitioner

The second component of the Whitehead model is the place of Experience; that of the 14 interviewees from VALID, and of my own, in reflecting upon experience in Christian faith communities. It is anticipated the research analysis will include discussion about how defined communities of faith may be more hospitable towards people with intellectual disability. This pole of the model serves the research purposes well. The model suggests that it is very important to be critically aware of past experiences of faith, both positive and negative, as these will influence reflections and judgements about future possibilities. For the Whiteheads, human experiences have their own

48 Whitehead and Whitehead, Method in Ministry, 35-50.

129 authority and are not passively transformed by the revelation transmitted in the Tradition; the transformation occurs when they engage in dialogue.49

In recalling the two-fold movement within the literature of disability and spirituality (section 2.3.6) it is anticipated this research project will reflect the important relationship between experience and tradition: human experience of disability will shape the researcher’s understanding of God. On the other hand, biblical understandings of friendship, as discussed in Chapter 3, will be clarified and revivified through interaction with the experience of disability.

4.4.2.3 Resources of the culture

The third pole of the model concerns cultural information within which Tradition and Experience are located. Discussion of the mutually clarifying and challenging dialogue between Tradition and Culture focuses on the contribution of cultural information to resource the Tradition in the pursuit of its religious mission. For the Whiteheads, social sciences, in their understandings of the human person and inquiry into community, are an indispensable source of information and perspectives for contemporary ministry:

The analytic stance of the social sciences can provide for religious reflection another point of view, another place to stand in understanding the Church’s activities in society, in bringing to light its presuppositions and evaluating its effects.50

As Figure 3 shows, the model provides a fluidity in which the analysis is conducted; this non-linear approach in which the poles of Tradition, Experience and Culture are interwoven will be reflected by me as a bricoleur. Whilst historical and cultural understandings of exclusion and loneliness were predominant in Chapter 1, Chapters 7 and 8 focus on analysis of people’s Experience. Chapters 9 and 10 will provide theological and societal interpretation and thus no one pole functions in isolation from the other.

49 Whitehead and Whitehead, Method in Ministry, 59-60. 50 Whitehead and Whitehead, Method in Ministry, 73.

130

Figure 3: Whitehead and Whitehead Model and Method

4.4.3 Whitehead and Whitehead Method

4.4.3.1 Attending

This initial stage of reflection requires two basic attributes; the ability to listen actively and the ability to respond with accurate understanding. In listening actively to the three poles of Tradition, Experience and Culture, the minister/researcher needs to be aware of the content, feelings and contexts of communication and information available. Responding with accurate understanding requires the minister/researcher to demonstrate they have understood the meaning from the communicator’s frame of reference.51 Chapters 7 and 8 will describe in detail the interviewee’s responses to the 10 Questions, with subsequent development of the two superordinate themes.

4.4.3.2 Assertion

The second phase of the method, assert, describes the act of witnessing to the Word that has been heard. Such assertiveness requires recognition that this witnessing occurs within the context of other people’s convictions and insights and is in

51 Whitehead and Whitehead, Method in Ministry, 83-84.

131 relationship with the researcher’s convictions and insights. Whitehead and Whitehead, in speaking of an assertive attitude, believe that the minister/researcher needs two attributes for an effective dialogue with the poles of Tradition, Experience and Culture.

Firstly, self-awareness requires an ability to note and manage personal thoughts, feelings, needs and desires to effectively understand the information being processed. The second attribute is self-disclosure, in which ideas, needs and purposes are clearly and specifically declared. In bringing these attributes to theological reflection, the minister/researcher engages both the divine and the human revelation that is unearthed. A critical engagement sees the Tradition as “neither a merely human product, nor as an undiluted divine deposit in human history.”52

4.4.3.3 Action

The third component is the pastoral response and decision making, the critical test of any method of theological reflection. In the move from insight to action, Whitehead and Whitehead believe that the most effective responses are those in which there is a shared ownership of the pastoral concern or issue. They are critical of responses which are driven solely by the minister/researcher, and they suggest that the response needs to be driven by corporate reflection and joint action.53

Previous discussion of praxis in section 4.3.3 attested to its importance for this project, and as a complementary application to Whitehead and Whitehead’s model and method, the praxis model, with its emphasis on liberation and transformation, will now be outlined.

4.4.4 Holland and Henriots’ ‘Pastoral Circle’

By privileging marginal perspectives, Holland and Henriot argue that social analysis for pastoral action today ‘should be heavily value-laden’, and the integrating aim of their method is to link faith and justice, by use of the ‘pastoral circle’, with social analysis being prominent.54 This ‘circle’ has four methods or moments:

52 Whitehead and Whitehead, Method in Ministry, 90-96. 53 Whitehead and Whitehead, Method in Ministry, 99. 54 Holland and Henriot, Social Analysis: Linking Faith and Justice, 6.

132 (i) Insertion into the lived experience of individuals and communities. In this circle the listening is focussed on specific questions:

Where and with whom are we locating ourselves, as we begin our process? Whose experience is being considered? Are there groups that are ‘left out’ when experience is discussed? Does the experience of the poor and oppressed have a privileged role to play in the process?

(ii) The second moment involves a critical social analysis (writer’s emphasis) of the situation. Reaching beyond issues, policies and structures, social analysis ultimately focuses on systems, including faith communities. Holland and Henriot:

The questions posed by social analysis unmask the underlying values that shape the perspectives and decisions of those acting within a given situation.

(iii) The third moment of the circle is theological reflection, with a strong component of dialogue with the other sources for interpretation. It is their contention that:

The Word of God brought to bear upon the situation raises new questions, suggests new insights and opens new responses.55

(iv) The fourth moment of the ‘pastoral circle’ is pastoral planning and requires carefully planned and executed action. This moment takes seriously the obligation to act, and in turn calls for further mediation through insertion, analysis, reflection and planning, continuing without conclusion. The fluidity of these four moments is represented below in Figure 4, with each moment providing information for the interpretive process.

55 Holland and Henriot, Social Analysis: Linking Faith and Justice, 8-15.

133

Figure 4: Holland and Henriots’ ‘Pastoral Circle’

4.5 Praxis and its application

Paver believes that whilst the ministry model of Whitehead and Whitehead, in the stages of assertion and ministry decisions, addresses issues of illumination and dissection of data and information, the praxis model, particularly through use of social analysis, offers more incisive and systematic analysis of the culture.56

As discussed in 4.3.2 and 4.3.3 the praxis model sharpens contextual interest with a focus on liberation and transformation of a culture that oppresses and diminishes people.

True Christianity … must work against such oppressive structures not just seeking to change certain features, but by seeking to supplant them completely. Liberation and transformation, not just gradual development or friendly persuasion, is the only way that men and women can fulfil their call to be genuine children of God.57

The dominant voice here is that of culture, providing the context for the research’s critical analysis of this situation. Theology is understood as a product of both ‘right thinking’ (orthodoxy), and ‘right acting’ () and the continual dialogue of these

56 Paver, Theological Reflection and Education for Ministry, 58. 57 Stephen B. Bevans, Models of Contextual Theology (New York: Orbis Books, 1996), 66.

134 two aspects of Christian life, employing a method which “in its most profound sense is understood as the unity (integration) of knowledge as activity and knowledge as content.”58 Swinton succinctly notes that praxis is “a way of being in the world and a way of critically analysing situations in the world. Christian praxis is the place where theology becomes embodied and acted out.”59

It is for this reason that the research emphasized the use of social analysis, a moment which figures prominently in Holland and Henriot’s ‘pastoral circle’. Social analysis, its purpose described in the next section, underpins the praxis model as a means, a conversation partner, to both deepen the analysis of the research participants’ narratives, as well as describe how change can be enacted in both faith communities and in disability services policy.

4.5.1 Application of social analysis

For Holland and Henriot social analysis is useful when data is gathered from the economic, social, political and cultural arenas and is analysed to discover linkages, identify causes and plan for action. They propose that “social analysis can be defined as the effort to obtain a more complete picture of the social situation by exploring its historical and structural relationships.”60 Philip Berryman is sharper still when he says praxis is constructed as “a tool for cutting through the appearance and getting at the heart of things.”61

Holland and Henriot emphasise that social analysis has a close relationship with theological reflection, effectively linking faith with justice. They assert the need for practising theological reflection with some sociological understandings, concerning for example, the structure of the church and the relationship of Culture and the Word of God. These implicit sociological and theological assumptions and understandings, they believe, are influenced by two root metaphors which compete for our loyalty and understanding of our view of life; namely the mechanistic and artistic. Within this framework the mechanistic root metaphor is driven by the machine (or technology)

58 Bevans, Models of Contextual Theology, 65. 59 John Swinton, “What is Practical Theology?” in A Companion to and Theology, eds. H. Bond and S. Kunin and F. Murphy (Edinburgh: Edinburgh University Press, 2003), 396. 60 Holland and Henriot, Social Analysis: Linking Faith and Justice, 14. 61 Philip Berryman, Liberation Theology (Chicago: Meyer-Stone Books, 1987), 85.

135 and has become all-consuming at the expense of the world’s spiritual depth, converting people to objects and becoming increasingly destructive. Designed to free humanity, the mechanistic (or technological) society may now be seen as trying to make humanity and the earth into its slaves but is at risk of destroying both.

The artistic root metaphor, in contrast, is emerging as an antidote to protect the preciousness of humanity and earth. This metaphor proposes a vision of society as a work of art, flowing from the creativity of rooted communities in solidarity with each other. This artistic root metaphor speaks directly to the two research questions. The vision lies in a renewed hope and imagination; a new orientation, inspired by agape, for enhanced friendship opportunities for adults with intellectual disability and a society which places value on their spirituality.

Holland and Henriot contend that an emphasis on these root metaphors helps us to understand the interpenetrating of the social and the theological and so brings together the creative strains in the understanding of social realities and religious dimensions.62

As a contemporary practical theologian, Cameron asserts that the primary characteristic for a practical theologian is that research undertaken about faith practices is ‘theological all the way through.’ She provides a cautionary reminder for practical theologians when engaging with social analysis warning that “theology cannot appear after the data has been collected as if it were simply ‘the icing on the cake already baked in the oven of social analysis.’”63

When considering all the material of this research project – written and unwritten, textual and practical, as a bearer of Christian faith, I will endeavour to express and interpret that in the light of this faith. Chapter 1 provided a backdrop to the historical, economic, social and political contexts in which the lives of people with intellectual disability are located. It also provided an early indicator of the researcher’s interest in social analysis, and its importance to this research. Social analysis, as an essential ingredient of praxis, will complement Whitehead and Whitehead’s framework for the research, and provide an invaluable lens to a deeper interpretation. As noted at the

62 Holland and Henriot, Social Analysis: Linking Faith and Justice, xvi-xxi. 63 Cameron et al, Talking about God in Practice: Theological Action Research and Practical Theology, 51.

136 beginning of this chapter, the relationship of practical theology to action research is important.

4.6 Practical theology and action research

4.6.1 Process of action research

Action research has emerged from a diversity of intellectual, educational and political trajectories, with its emphasis on the quality of the social, as opposed to the natural world. There is a commitment to the ultimate dignity of the human subject as author of their own destiny. Action research is fundamentally rooted in a social constructivist epistemology that sees people as builders and interpreters of meaning.64 Peter Reason and Helen Bradbury propose that:

… our world does not consist of separate things but of relationships which we co-author. We participate in our world, so that the ‘reality’ we experience is a co-creation that involves the primal given-ness of the cosmos and human feeling and constructing.65

Such a co-creation is what excited and inspired the decision to utilize action research as a strategy. To be a co-author in the development of new knowledge is congruent with my professional background in community development, and the belief that one person (researcher) cannot speak and represent the ‘voices’ of others without their permission and participation in the process. There is also a clear political imperative which has influenced this decision in that advocacy for the recognition of spirituality would lack credibility without the imprimatur of the people with intellectual disability who provide their insights and are engaged with the advocacy process.

I have chosen participatory action research as one of the two qualitative research methodologies (described in Chapter 5) for the following 3 reasons. Firstly, it is compatible with different contexts of my life and work where I am personally and actively involved. Secondly it has explicit political commitment to social change.66

64 Elaine Graham, “Is Practical Theology a Form of ‘Action Research’?” International Journal of Practical Theology 17, no. 1 (2013): 154-156. 65 Peter Reason and Helen Bradbury, eds., Handbook of Action Research: Concise paperback edition (London: Sage Publications, 2006), 7. 66 Johann Mouton, How to succeed in your Master’s and Doctoral studies: A South African Guide and Resource Book (Pretoria: Van Schaik Publishers, 2001), 151.

137 Thirdly it takes seriously the knowledges and understandings of participants and that each person has opportunity to influence the process of the research.67

Action research is a collaborative approach to inquiry or investigation that provides people with the means to take systematic action to resolve specific problems.68 The researcher in community-based approaches is not so much that of an ‘expert’ who does research, rather, they act as a resource person. Their role is as a catalyst to assist stakeholders in defining their problems clearly and to support them as they work toward effective solutions to the issue that concerns them. I am drawn to this approach as it is consistent and congruent with the praxis model. Chapter 6 will detail the process of engagement with VALID’s experts’ group which led to the creation of the ‘Statement of Spirituality’.

The privileging of contextual, situated inquiry such as this action research project is well summarised by Ernest Stringer who claims that action research primarily seeks

… to provide a place for the perspectives of people who have previously been marginalised from opportunities to develop and operate policies, programs, and services – perspectives often concealed by the products of a typical research process.69

For the voices of these marginal perspectives to be heard and be active in public places, Elaine Graham outlines the three principles underpinning action research. They provide a key element in the foundations for this research project.

4.6.2 Principles of action research

Graham’s first principle is that action research starts not from theory, but with a problem, proceeding inductively through an action-reflection cycle. Knowledge gained is pragmatic and strategic, and the best form of learning is by doing.70 Any kind of distillation of concepts in action research aims to “build collaboratively constructed

67 Stephen Kemmis and Robin McTaggart, “Participatory Action Research,” in Strategies of Qualitative Inquiry, eds. Norman K. Denzin and Yvonna S. Lincoln (Thousand Oaks: Sage Publications, 2003), 347. 68 Ernest T. Stringer, Action Research: A Handbook for Practitioners (Thousand Oaks, California: Sage Publications, 1996), 15-38. 69 Stringer, Action Research, 207. 70 Graham, “Is Practical Theology a Form of ‘Action Research’?” 151.

138 descriptions and interpretations of events that enable groups of people to formulate mutually acceptable solutions to their problems.”71 In this situation, the problem had been identified by myriad individuals and groups, including participants at VALID’s annual conference.

Graham’s second principle is that it is essentially a collaborative and participatory approach, adopting an inductive, insider approach. Those closest to the situation represented provide the most authentic understanding and are viewed as full participants rather than as research subjects or informants. The role of the researcher is therefore as an expert facilitator putting skills to work which will facilitate change. In this way, action research, as a post-positivist social science, draws on postmodern epistemologies that privilege contextual, situated inquiry and the reflexivity of the researcher distinguishes itself from other fields of qualitative research.

This principle has direct application to this research. As insiders and co-researchers, authentic understanding about spirituality is provided by the 14 interviewees. They are the experts of their experience; analysis and theological discussion aims to facilitate change in both faith communities and the disability services sector.

Graham’s third principle is that action research transcends the immediacy of problem solving by moving towards a more expansive vision of well-being and human flourishing in which autonomy, self-understanding and self-actualisation are the ultimate goals. Such a search for meaning and understanding is referred to as a transformed consciousness for all involved in which there is cultivated an enhanced aptitude for action and reflection.72 In challenging faith communities and disability services policy, this third principle is congruent with Holland and Henriot’s artistic root metaphor, seeking a new orientation in response to the two research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

71 Stringer, Action Research, 189-190. 72 Graham, “Is Practical Theology a Form of ‘Action Research?’” 151-154.

139 In seeking to enhance the well-being and quality of life for people with intellectual disability and communities in which they are embedded, action research reflects the value of doing things with people rather than to them. The relational stance of an ‘appreciative ally’ is characterised by a spirit of respect, curiosity and hope.73

4.6.3 Application of practical theology and action research

Graham claims that interest in action research amongst practical theologians has emerged over the past thirty years. Theology, as ‘talk about God’ is oriented towards faithful discipleship. As contextual theology, practical theology aims to understand how theology is mediated through human language and culture. Both inductive epistemologies value the common sense of informants and participants and are expressive of the pragmatic turn in philosophy and the eschewal of privileged ‘ivory tower’ forms of knowledge generation.74

Graham writes that potential affinity between practical theology and action research, in the English-speaking context, first emerged in 2006 with the release of Swinton and Mowat’s Practical Theology and Qualitative Research. They provided a set of qualitative tools to enable greater understanding and analysis of practical examples of faith-in-action.75

One of the five case studies Swinton and Mowat describe is a project in which people with intellectual disability were co-researchers, seeking to understand the significance of spirituality for themselves. This case study, referred to in 3.6.2, was one of several projects conducted by the Learning Disabilities Foundation in the UK. The interviews in that study provided the inspiration and foundation for the current research project and will be detailed in Chapter 6. In asserting that practical theology is “fundamentally action research,”76 Swinton and Mowat write:

In qualitative research settings this is a method of enquiry and practice which encourages controlled and focused change using the knowledge

73 William C. Madsen, Collaborative Therapy with Multi-Stressed Families (New York: The Guilford Press, 2007), 22. 74 Graham, “Is Practical Theology a Form of ‘Action Research’?” 158-159. 75 Graham, “Is Practical Theology a Form of ‘Action Research’?” 158-159. 76 Swinton and Mowat, Practical Theology and Qualitative Research, 255.

140 and expertise of those involved in the research setting (….) In Practical Theology it can be understood to be a framework of enquiry which is driven by the desire to create the circumstances for transformative action that not only seeks after truth and knowledge, but also offers the possibility of radical transformation and challenging new modes of faithfulness.77

4.7 Conclusion

This chapter has outlined and described the researcher’s interest in, and experience as a practical theologian. Practical theology is the discipline best suited to the exploration of this research project. The foundations of practical theology, including Holland and Henriot’s ‘pastoral circle’ have been described and contextualised, as have the models and approaches chosen for the research project. Praxis, with its emphasis on social analysis will complement Whitehead and Whiteheads’ model of theological reflection and engagement.

Chapter 5 will provide the context for the qualitative nature of the research. Carter and Little’s model of epistemology, methodology and method will provide a framework that adds more detail to the two chosen research methodologies: Interpretive Hermeneutic Phenomenology (IHP) and Participatory Action Research (PAR).78 The approach used to analyse and thematize the interviews, Interpretive Phenomenological Analysis (IPA), will also be described.

77 Swinton and Mowat, Practical Theology and Qualitative Research, x. 78 Carter and Little, “Justifying Knowledge, Justifying Method,” 1316-1328.

141 Chapter 5: Researching Lived Experience

5.1 Introduction

This chapter locates the epistemology, methodology and methods within the paradigm of qualitative research. I was schooled in a science-based framework of research methodology that emphasises the hypothetico-deductive approach.1 However, qualitative research, with its contrasting values-based inductive emphasis on developing understanding from more specific information provides an accurate and creative ‘fit’ for this research. There are many elements of phenomena related to human experience which cannot be represented or illuminated by quantitative methods. Spirituality for example does not lend itself to statistical measurement. It is refreshing to read Anselm Strauss and Juliet Corbin:

Some areas of study naturally lend themselves more to qualitative types of research, for instance, research that attempts to uncover the nature of persons' experiences with a phenomenon, like illness, , or addiction.2

This definition implies that qualitative research is more concerned with meaning, processes and understanding of the human person within communities and society, rather than empirical measurements of quantity, frequency or intensity. Norman Denzin and Yvonna Lincoln capture this distinction:

Qualitative researchers seek alternative methods for evaluating their work, including verisimilitude, emotionality, personal responsibility, an ethic of caring, political praxis, multivoiced texts, and dialogues with subjects.3

This is the realm of lived experience. When discussing the nature of lived experience, van Manen highlights phenomenology’s commitment to knowledge arising from the ti estin, the “What is it like?” question, an approach clearly aligned with this project.4

1 As outlined in Allan Kellehear, The Unobtrusive Researcher: A Guide to Methods (Sydney: Allen and Unwin,1993), 16-31. 2 Anselm Strauss and Juliet Corbin, Basics of Qualitative Research: Grounded Theory Procedures and Techniques (London: Sage Publications, 1990), 17-31. 3 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 10. 4 van Manen, Researching Lived Experience, 38.

142 5.2 Van Manen’s lived experience – human science research

“What is it like?” emphasises phenomenology’s commitment to lived experience and knowledge, described and interpreted via the textual practice of reflective writing. Lived experiences gather hermeneutic significance as we (reflectively) gather them by giving memory to them. Through , conversations, day dreams, inspirations and other interpretive acts we assign meaning to the phenomena of lived life.5 Wilhelm Dilthey suggested that lived experience is to the soul what breath is to the body: “Just as our body needs to breathe, our soul requires the fulfilment and expansion of its existence in the reverberations of emotional life.”6 Lived experience is the breathing of meaning, and it has a certain essence, a quality that we recognise in retrospect.

In our daily lives there is an implied non-reflective type of consciousness, and phenomenology, fed by this non-thematic and non-reflective consciousness, provides a reflective consciousness which it thematises and interprets in order to determine the meanings embedded within. Knowledge is therefore developed through description and interpretation of lived experience, and this epistemology of experience and perception involves the textual practice of reflective writing which is called “human science research”.7

As someone interested in the world of lived experience, the gathering of narrative constructions from the research process is the ‘fit’ I had been looking for. This comes about in three ways: for my own ways of knowing; for managing research about the phenomenon under study; and for the desire to reconstruct something of value from the participants that supports other people.

The task of such phenomenological research is to reveal the individual’s lived meaning of the world. Rather than assuming an understanding, it works to develop understanding using the meanings revealed and constructed by the participants. Research from this perspective seeks the constructions that particular people in a particular place at a particular time, make about an event or a phenomenon within their

5 van Manen, Researching Lived Experience, 37-38. 6 Wilhelm Dilthey, Poetry and Experience: Volume 5 of Selected Works, eds. Rudolf A. Makkreel and Frithrof Rodi (Princeton, N.J.: Princeton University Press, 1985), 59. 7 van Manen, Researching Lived Experience, 38.

143 lives. Phenomenology asks: “What is this or that kind of experience like?” It attempts to gain insightful descriptions of the way people experience the world pre-reflectively without trying to find theories to explain it. It offers the possibility of plausible insights that bring us more in contact with the world. Anything that presents itself to consciousness is of interest to phenomenology, as consciousness is the only access human beings have to the world.8 Phenomenology always asks the question: “What is the nature or meaning of something?”

Van Manen describes lived experience as:

the starting point and end point of phenomenological research. The aim of phenomenology is to transform lived experience into a textual expression of its essence – in such a way that the effect of the text is at once a reflexive re-living and a reflective appropriation of something meaningful: a notion by which a reader is powerfully animated in his or her own lived experience.9

5.2.1 Schema for researching lived experience

Van Manen presents four components central to lived experience: temporal experience (how time is lived); spatial experience (how distance and space are lived); corporeal experience (how physical body is lived); and relational experience (lived experience through relationships). These four components, especially the relational one, are of great importance to this research project, the relational one in particular because of the researcher’s interest in the importance of friendship. Finding the descriptions that may be common to the experiences of the 14 interviewees (and that resonate with me as the researcher) will depend on my attentiveness to these four components.

Van Manen’s approach and methodical structure in researching lived experience will guide the research. He asks, “How can human science research be pursued?”10 He describes the structure of the dynamic interplay between six research activities, a helpful framework for this project:

8 van Manen, Researching Lived Experience, 9. 9 van Manen, Researching Lived Experience, 36. 10 van Manen, Researching Lived Experience, 30.

144 (1) Turning to a phenomenon which seriously interests us and commits us to the world. Phenomenological research is a being-given-over to some quest, a true task, a deep questioning of something that restores an original sense of what it means to be a thinker, a researcher, a theorist. It is always a project of someone: a real person, who, in the context of particular individual, social, and historical life circumstances, sets out to make sense of a certain aspect of human existence.

(2) Investigating experience as we live it rather than as we conceptualise it. Phenomenological research aims to establish a renewed contact with original experience. It requires the researcher to stand in the fullness of life, in the midst of the world of living relations and shared situations. It also means the researcher actively explores the category of lived experience in all its modalities and aspects.

(3) Reflecting on the essential themes which characterise the phenomenon. Phenomenological research makes a distinction between appearance and essence, between the things of our experience and that which grounds the things of our experience. It reflectively brings into nearness that which tends to be obscure, which evades the intelligibility of our natural attitude of everyday life.

(4) Describing the phenomenon through the art of writing and rewriting. Phenomenology is the application of logos (language and thoughtfulness) to a phenomenon (an aspect of lived experience), to what shows itself precisely as it shows itself.

(5) Maintaining a strong and oriented pedagogical relation to the phenomenon. To establish a strong relation with a certain question, phenomenon, or notion, the researcher cannot afford to adopt an attitude of so- called scientific disinterestedness. To be strong in orientation, the researcher will not settle for superficialities and falsities.

(6) Balancing the research context by considering parts and wholes. Qualitative research (qualis means “whatness”) asks the ti estin question: What is it? What is this phenomenon in its whatness? But as one engages in the ti

145 estin question, there is the danger of losing sight of the end of phenomenological research: to construct a text which in its dialogical structure and argumentative organisation aims at a certain effect.11

Before describing in Chapter 6 the detail and design of this “human science research”, a rationale is needed for the selection of methodology(s), methods, and underlying epistemology. Carter and Little’s model provides such a framework for the planning, implementation and evaluation of the rigour of qualitative research. Their model has three fundamental research facets: epistemology, methodology and methods.12

5.3 Carter and Little’s model for qualitative research

Carter and Little’s model summarises epistemology as the theory and justification of knowledge and methodology is the theory and analysis of a particular approach. This in turn provides the justification for chosen methods as the particular techniques and tools chosen for the given research.13 These three facets are intricately connected and act reciprocally in research planning and implementation. Carter and Little’s model invites three decisions:

• Choose the epistemological position,

• select a variant of a methodology to employ (or elements of existing methodologies to combine), and

• select methods, within the chosen epistemology and methodology that will produce the best data to answer the research questions.

The sections below discuss the primacy of epistemology and its direct influence on the choice of methodology and methods, followed by details of the methodologies and methods used to answer the research questions. They lay the foundation for the framework of the research project, support decisions about methodologies and methods, and demonstrate coherency with practical theology.

11 van Manen, Researching Lived Experience, 30-34. 12 Carter and Little, “Justifying Knowledge, Justifying Method,” 1316-1328. 13 Carter and Little, “Justifying Knowledge, Justifying Method,” 1317.

146 5.3.1 An epistemological position

The term ‘epistemology’ is used to designate the theory of knowledge and presents a view and justification for what can be regarded as knowledge – what can be known and the criteria that knowledge must satisfy in order to be called knowledge rather than beliefs.14

In what way(s) then is epistemology, as developed by “human science research,” important for the practical theologian? Returning to Graham’s examination of practical theology and action research, she raises important questions regarding epistemology relevant to this research project:

Are action research and practical theology simply aiming at improvements in practice, such as enhanced competence or strategic change? Or do they reflect a more radical epistemology that sees ‘practice’ as disclosive of meaning, and an understanding of action as a legitimate source of knowledge about the world – and in the case of practical theology, about God in the world?15

Reiterating this here is important as action research is fundamentally rooted in a social constructivist epistemology that sees people as builders and interpreters of meaning.16 For Graham, the purpose of research, and for practical theologians in particular, myself included, is to develop a new kind of practical knowledge or wisdom, phronesis, expressed as ‘talk about God:’ not one that is concerned with propositional or abstract understanding of divine nature and being, but one which facilitates a dispositional understanding – an attentiveness which is directed towards deeper participation in the life of the world and practices of God in the world. This understanding of epistemology lays the foundation for considering the ways in which it influences and infuses methodology and methods. Philosophical and epistemological underpinnings of qualitative methodologies will be outlined prior to discussing the specific methodologies and methods used in this research.

14 Norman W. H. Blaikie, Approaches to Social Inquiry (Cambridge: Polity Press,1993), 7. 15 Graham, “Is Practical Theology a Form of ‘Action Research’?” 149. 16 Graham, “Is Practical Theology a Form of ‘Action Research’?” 154-156.

147 Carter and Little’s model and framework of qualitative research recognizes that methodologies justify methods and methods produce knowledge implying methodologies have epistemic content. They also state that a decision about the desired research methodology may entail a combination of existing methodologies.17 Indeed, a combination of methodologies will be applied in this research that engage two variants: interpretive hermeneutic phenomenology (IHP) and participatory action research (PAR) will adress the two research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

IHP provides the interpretive and hermeneutical framework for discovering the meaning people ascribe to their lived experience: specifically, how spirituality influences their lives. PAR provides the constructivist epistemology in which people build and interpret meaning, and also provides the framework for collaborative engagement and action.

5.4 Choosing a methodology

Carter and Little’s discussion of how methodology justifies method refers to Abraham Kaplan’s book, The Conduct of Inquiry,18 in which the tension between what is actually done in research and the way we talk about what is done, is highlighted. They describe Kaplan’s use of the term logic-in-use to refer to the logic a researcher uses to produce knowledge, and the term reconstructed logic to refer to attempts to explicitly formulate, articulate, analyse or evaluate logic-in-use. The evolution of qualitative research over several decades has developed and defined a range of reconstructed logics into six categories of qualitative methodology:

• Grounded theory approaches

17 Carter and Little, “Justifying Knowledge, Justifying Method,” 1319. 18 Abraham Kaplan,The Conduct of Inquiry: Methodology for Behavioural Science (San Francisco: Chandler Publishing, 1964).

148 • Narrative, life history, testimonio, and biographical

• Ethnographies

• Participatory action research traditions

• Phenomenological or phenomenographic traditions

• Case study approaches.

Carter and Little suggest that some of the methodologies listed above are more prescriptive about method than others, but all provide the researcher with an overall strategy for formulating, articulating, analysing and evaluating their methods.19

As indicated, this project will use methodologies from two of these categories: (i) phenomenological traditions and (ii) participatory action research traditions. The following discussion outlines in detail the origins, philosophical underpinnings and underlying rationale for the application of these two methodologies to this research.

5.4.1 Phenomenology and its tradition

In phenomenological research, the close relationship between researcher and participant is rooted in philosophy, and defined broadly by whether the researcher emphasises a descriptive or interpretive approach. The latter builds on the former, an emphasis in this research. A detailed description of IHP will follow an outline of its foundational exponents.

5.4.1.1 Husserl’s descriptive phenomenology

Edmond Husserl (1859 – 1938) is credited with founding modern phenomenology which was opposed to philosophical realism, claiming that an external world exists independent of one’s knowledge of it.20 Husserl regarded human experience as a fundamental source of knowledge and study in its own right, and developed phenomenology as an approach to studying ‘things as they are’ in order to arrive at a

19 Carter and Little, “Justifying Knowledge, Justifying Method,” 1317-1318. 20 Thomas A. Schwandt, The Sage Dictionary of Qualitative Inquiry (California: Sage Publications, 2007), 225.

149 rigorous and unbiased understanding of essential human consciousness and experience.21 Husserl’s vision was for a philosophy of the study of the universal essence, or whatness of things, in which objective examination would reveal a core essence of a phenomenon. Such objectivity was attained by ‘bracketing’ where the researcher remains separated from the natural world and the world of interpretation in order to see the essence of the phenomenon. Bracketing was essential to moving from the everyday experience, or ‘natural attitude’ to the ‘phenomenological attitude’ which involves examining the perceptions of objects, in order to encounter “things as they are in themselves” free from preconceptions.22

Husserl developed the concept of lifeworld (Lebenswelt) which is the inter-subjective world of human experience and social action; it is the world of common-sense knowledge of everyday life. Lifeworld is the world of “immediate experience”, the world as “already there”, “pregiven”, the world as experienced in the “natural, primordial attitude”, that of “original natural life”. 23 This primary focus on the lifeworld of the participant is at the core of phenomenological inquiry and for Husserl, descriptive phenomenology:

… is a discipline that endeavours to describe how the world is constituted and experienced through conscious acts … and must describe what is given to us in immediate experience without being obstructed by pre- conceptions and theoretical notions.24

5.4.1.2 Heidegger’s interpretive phenomenology

Martin Heidigger (1889-1976) built on Husserl’s work, developing an alternative philosophical approach called interpretive or hermeneutic phenomenology. By modifying Husserl’s ‘things as they are’ approach, with its descriptive emphasis, to a focus on ‘deriving meaning from being,’ Heidegger’s approach recognises the centrality of the concept Dasein, which aims to let the things of the world speak for

21 Maura Dowling, “From Husserl to van Manen: A Review of Different Phenomenological Approaches,” International Journal of Nursing Studies 44, no.1 (2007): 131-142. 22 Linda Finlay, Phenomenology for Therapists: Researching the Lived World (West Sussex, UK: Wiley – Blackwell, 2011), 44. 23 Edmund Husserl, The Crisis of European Sciences and Transcendental Phenomenology, trans. David Carr (Evanston: Northwestern University Press,1970), 103-186. 24 van Manen, Researching Lived Experience, 184.

150 themselves. His questions: What is the nature (Being) of this being? What lets this being be what it is? 25 Heidegger considered language, thinking and being to be one, and only through language could ‘being-in-the-world’ be understood.26

Interpretive in emphasis, researchers working in this tradition encourage participants to describe interactions, relations with others and physical experiences in order to place their lived experience in the context of daily life. In contrast to ‘bracketing’, interpretive phenomenology therefore focuses on describing the meanings attributed by individuals ‘being in the world and how these meanings influence the choices that they make’.27 This “open discovering way of being”, instead of ‘bracketing’, was described by Karin Dahlberg et al as ‘bridling,’ in which researchers should develop a capacity to be surprised and sensitive to the “unpredicted and unexpected”. Bridling combined the meaning of bracketing (with its restraining of personal beliefs and assumptions), and the idea that researchers should be disciplined in their interactions with the phenomenon in an effort to slow their interpretations, an essential aspect to all research, particularly when participants may have cognitive difficulty.28

5.4.1.3 Interpretive hermeneutic phenomenology (IHP)

Heidegger, again building on Husserl, believed that there can be no unmediated knowledge of an experience in relation to the world. Central to his concept of Dasein, or ‘being in the world’, is the awareness that self cannot be separated from the world, in contrast to Husserl’s position that strives to look at the experiences of others free from the influences of previous experiences. Heidegger believed that our activities and understandings of the meaning of things can only be understood through our relationship with the world.29 He considered language, thinking and being to be one, and only through language could being-in-the-world be understood.30 One implication

25 van Manen, Researching Lived Experience, 184. 26 van Manen, Researching Lived Experience, 38. 27 Kay A. Lopez and Danny G. Willis, “Descriptive Versus Interpretive Phenomenology: The Contributions to Nursing Knowledge,” Qualitative Health Research 14, no. 5 (2004): 729. 28 Karin Dahlberg and H. Dahlberg and Maria Nyström, Reflective Lifeworld Research (Lund,Sweden: Studentlitteratur, 2008), 98. 29 Jonathan Smith and Paul Flowers and Michael Larkin, Interpretative Phenomenological Analysis (Los Angeles, California: Sage Publications, 2009), 18. 30 van Manen, Researching Lived Experience, 38.

151 is that all human interactions are interpretations, necessitating close examination of how they are constructed.

Heidegger also described the importance of a “hermeneutic circle” which “moves between question and answer”. The researcher starts with a pre-understanding and “moves on to being open to discovering something”.31 A deeper understanding of a phenomenon is generated through openness to the reinterpretation and revision of an initial understanding, leading to a challenge of the new interpretation.

This is critical for the interpretative approach of the current study because of the complex, relational nature of the phenomenon being investigated. It is not possible for the interpreter of a text to be separate from the meaning because the reader belongs to the text and the history of the interpreter must be as much a part of the interpretation as is the history of the creator of the text.

Building on Heidegger’s work, and focussing also on the hermeneutic process, Hans- Georg Gadamer stated:

And who would deny that there are real factors conditioning human life, such as hunger, love, labour, and domination, which are not themselves real language or speaking, but which for their part furnish the space within which our speaking to each other and listening to each other can take place.32

He suggests that all human interactions are interpretations and are socially constructed, epistemologically critical for the relationship of the researcher with the participant in this particular research project, because of the use of language and the relational dimensions of the phenomenon. I gathered these narratives from a place influenced by my experiences with my lived world, and readers of the accounts created from these narratives will incorporate them into the contexts of their lived worlds.

This study is grounded in an epistemological stance that recognises the power of words, and in a belief that experiences are “soaked through with language”.33 The relationship between researcher and participants was integral in investigating the

31 Finlay, Phenomenology for Therapists: Researching the Lived World, 53. 32 Hans-Georg Gadamer, “Reflections on my Philosophical Journey,” in The Philosophy of Hans- Georg Gadamer, ed. Lewis Edwin Hans (Chicago: Open Court, 1997), 28. 33 van Manen, Researching Lived Experience, 38.

152 phenomenon of spirituality in the lives of adults with intellectual disability. Whilst Interpretive Hermeneutic Phenomenology (IHP) provides the methodology to explore meaning and understanding that the 14 interviewees ascribed to their spirituality, the second research methodology, PAR, was the approach used to collaboratively generate new knowledge with the interviewees and to partner in advocating for change. PAR’s tradition and its application, particularly in relation to research with adults with intellectual disability, now follows.

5.4.2 Participatory action research (PAR) tradition

5.4.2.1 Background and purpose

Chapter 4 established that action research is rooted in a constructivist epistemology in which people are builders and interpreters of meaning. Rather than being the ‘expert’ the researcher becomes a facilitator with those being researched and a co- creator of new knowledge playing the role of an ‘appreciative ally’. Gerry Zarb states that participatory action research, in stressing non-hierarchial relationships, was done with people with disability, not on them.34

Alice McIntyre outlines the history of PAR in a host of social and community contexts, revealing the context-specific nature of PAR. Owing to that specificity there is no fixed formula for designing, practising and implementing PAR projects, nor is there one overriding theoretical framework that underpins PAR processes. She does however point to three significant influences on the development of PAR over the past century. Firstly Kurt Lewin in the 1940s focussed on group dynamics and the belief that as people examine their realities, they will organise themselves to improve their conditions. Secondly, critical theory contributed to PAR by suggesting that researchers attend to how power in social, political, cultural and economic contexts informs how people act in everyday situations.35 Thirdly McIntyre highlights the influence of Brazilian adult educator, Paulo Freire. Freire developed the theory of conscientisation, the belief in critical reflection as essential for individual and social change. Whilst

34 Gerry Zarb, “On the Road to Damascus: First Steps Towards Changing the Relations of Disability Research Production,” Disability, Handicap and Society 7, no. 2 (1992): 125-138. 35 Critical theory provides the descriptive and normative bases for social inquiry aimed at decreasing domination and increasing freedom in all their forms.https://plato.stanford.edu/entries/critical- theory/ accessed 13 June, 2018.

153 practitioners of PAR use a wide range of practices that are related to an equally wide range of political ideologies, McIntyre concludes there are four underlying tenets which inform PAR projects, including this current project:

(a) A collective commitment to investigate an issue or problem;

(b) A desire to engage in self and collective reflection to gain clarity about the issue under investigation;

(c) A joint decision to engage in individual and/or collective action that leads to a useful solution; and

(d) The building of alliances between researchers and participants in the planning, implementation and dissemination of the research process.36

I have selected PAR as the best fit for this research for three reasons. Firstly, it is congruent with actions taken in different contexts of my life and work. Secondly, there is an explicit political commitment to the empowerment of participants and to social change. Thirdly it takes seriously the knowledge and understandings of the research participants, from clients to management. PAR makes many contributions to social science research and by extension I would claim these are also applicable to action research in a theological context. McIntyre focuses on three of these contributions which are all relevant to my research.

5.4.2.2 Three contributions of PAR to social science research

Firstly, McIntyre notes that it offers a theory of possibility rather than a theory of predictability by providing “multiple opportunities for practitioners and participants to construct knowledge and integrate theory and practice in ways that are unique and practical to a particular group.” There is a resultant demystifying of what research is and how it can relate to people’s lives. Participants in PAR projects in turn come to appreciate their capacity to speak about, and add to new knowledge that enriches themselves as contributing members of society. This in turn fosters community- building and a willingness to engage in processes of action and change.

36 Alice McIntyre, Participatory Action Research: Qualitative Research Methods Series 52 (A Sage University Paper: Sage Publications, 2008): 1-5.

154 Secondly, PAR provides opportunities for people to insert themselves into the research process as subjects of their own history thus revealing aspects of their living histories in ways that reflect their personal and collective truths and realities.

Thirdly these personal and collective truths and realities afford people the freedom to explore and value how they experience them. With this comes the freedom to be innovative about how they engage with the research process. Creative activities and group dialogue for example can lead to the generation of provocative new ideas about how to address and solve important practical problems.37

In summary, participatory research is conducted directly with the immediately affected persons. This enables these co-researchers, from marginalized groups whose views are seldom sought, to develop a reconstruction of their knowledge and ability in a process of understanding and empowerment.38 For people who have little opportunity to articulate, justify and assert their interests, Orlando Fals-Borda and Mohammed Rahman put it succinctly when defining PAR as the “enlightenment and awakening of common peoples.”39

Having discussed epistemology’s influence on the chosen methodologies of IHP and PAR, the following section focuses on the relationship between epistemology and methods. For Carter and Little, epistemology has three main influences on methods.

5.5 Epistemological influences on methods

An important aspect of epistemology is its axiological nature, that is, values and ethical weight. Axiology relates to epistemology in two ways: to epistemology itself, and to the cultural context that informs epistemology. The researcher brings his or her values as they compare “the values of participants to their own values and those of the broader culture, which are informed by research.”40

37 McIntyre, Participatory Action Research, 67-68. 38 Jarg Bergold and Stefan Thomas, “Participatory Research Methods: A Methodological Approach in Motion,” Forum: Qualitative Social Research 13, no. 1 Art. 30 (January, 2012): 5. 39 Orlando Fals-Borda and Mohammed A. Rahman, preface in Action and Knowledge: Breaking the Monopoly With Participatory Action Research, by Orlando Fals-Borda and Mohammad A. Rahman (New York: Doubleday, 1991), vii. 40 Carter and Little, “Justifying Knowledge, Justifying Method,” 1321.

155 For Carter and Little there are three influences on methods that will be explored below and illustrated later as the practical, operational dimensions of the methodology are described:

• The relationship between the researcher and the participant;

• the way that quality of methods is demonstrated, and

• the form, voice and representation in the method.41

5.5.1 Relationship between researcher and the participant

Carter and Little claim that “epistemology profoundly shapes the researcher’s conceptualisation of the participant in data collection and analysis.”42 This challenges the perceptions and pre-suppositions I bring to the task of research. Are the participants perceived as people who have knowledge that is credible, that can contribute to the development of new knowledge, phronesis and which in turn will have practical benefits and outcomes for themselves and other people? Is it assumed each person can express thoughts and feelings about important things in their life?

For me a number of questions arise:

• Might the participants have agency in the research process and be co-creators of the study?

• Why would there be interest in this dimension of a person’s life, and with this particular cohort of people?

• Do I adopt a detached or a more relational approach with the participants, in order to jointly create understanding and meaning?

These questions relate to values, to axiology. Respect for people’s autonomy, and recognition of the authenticity of their lives is paramount to me. Culturally and historically people with intellectual disability have led devalued lives and this research

41 Carter and Little, “Justifying Knowledge, Justifying Method,” 1321-1323. 42 Carter and Little, “Justifying Knowledge, Justifying Method,” 1321.

156 hopes to contribute new knowledge which will challenge current policy perspectives in both faith-based and disability services’ contexts.

In Chapter 1 the practice of reflexivity, not ‘leaving myself off the page’, commenced. I intend, where appropriate, to use personal experience and knowledge as valuable guides to this inquiry. Graham writes that such self-revelation is rare in most academic literature.43 However it is necessary, not only to understand the descriptive dynamics of a situation, but as a form of attentiveness towards what Swinton and Mowat call “God’s redemptive practices”.44 My commitment to reflexivity as a qualitative researcher:

… points to the fact that the inquirer is part of the setting, context and social phenomenon he or she seeks to understand. Hence reflexivity can be a means for critically inspecting the entire research process including reflecting on the ways in which a fieldworker establishes a social network of informants and participants in a study. 45

5.5.2 The way that quality of methods are demonstrated

Carter and Little evaluate how a chosen epistemic position dictates data quality and analysis in qualitative research by contrasting two research approaches, one of a reflexive nature, the other a more positivist one.46

In discussing qualitative methods and data collected, there is an implication about the importance of validity; in social science, validity is an important criterion of inquiry. Once the narratives are gathered and transcribed how do we ‘test’ their validity to know whether they are true and certain?There is considerable discomfort and some outright rejection of this criterion amongst social inquirers committed to constructivist, postmodernist, feminist and pragmatic perspectives.

Whilst acknowledging the importance of this critique, Swinton and Mowat assert however that issues of rigour and validity are important to avoid the interpretative process diverging from the given ‘script’ in ways that are misleading, inappropriate and actually misrepresentative of the phenomenon being explored. Because qualitative

43 Graham, “Is Practical Theology a form of ‘Action Research’?” 149-150. 44 Swinton and Mowat, Practical Theology and Qualitative Research, 5. 45 Thomas. A. Schwandt, The Sage Dictionary of Qualitative Inquiry, 260. 46 Carter and Little, “Justifying Knowledge, Justifying Method,” 1321-1323.

157 research seeks to understand rather than explain, they draw on the concept of ‘trustworthiness’ as a means to identify and define rigour within qualitative research. Egon Guba and Yvonna Lincoln proposed that trustworthiness is comprised of three dimensions – credibility, auditability and fittingness – which provide the validation framework in Chapter 6.10.47

For van Manen phenomenology is the science of phenomena, in contrast to an empirical and objective scientific approach which would require verification and validity of data. Phenomenology does not produce empirical or theoretical observations or accounts which can be validated, rather, as a human science, its purpose is to “interpret meaningful expressions of the active inner, cognitive, or spiritual life of human beings in social, historical or political contexts.”48

The congruence of this purpose with practical theology is such that practical theology’s ‘talk about God’ is not concerned with propositional or abstract understanding of divine nature and being, but rather, seeks an attentiveness which is directed towards deeper participation in the life of the world and practices of God in the world.49

5.5.3 Form, voice and representation in the method

How does the researcher communicate with his or her readership? This needs to be consistent with the adopted epistemic position, and determines to what extent the researcher writes with their own voice, or takes a more objective, third person approach.50 For the co-production of new knowledge in this research reflexivity is paramount. As the primary constructor of the final thesis, reflexivity requires me to incorporate aspects of my own story when appropriate and engage reflections on my participation in the research process.

When analysing and discussing the voices and perspectives of the research participants, as co-producers of the research, direct quotations will be presented in bold form to provide respect and prominence to their voices. Quotations from the

47 Egon G.Guba and Yvonna S. Lincoln, “Competing paradigms in qualitative research”, in Handbook of Qualitative Research, eds. Norman K.Denzin and Yvonna S. Lincoln (Thousand Oaks, California: Sage Publications, 1994):105-117. 48 van Manen, Researching Lived Experience, 181. 49 Graham, “Is Practical Theology a Form of ‘Action Research?” 158-159. 50 Carter and Little, “Justifying Knowledge, Justifying Method,” 1322.

158 transcribed interviews will assist in illustrating themes and interpretations of the gathered texts, in order to engage the readers who are also active interpreters of the text. Heidegger stated that only through language could being-in-the-world be understood. According to van Manen, such ‘human science research’ involves the textual practice of reflective writing “for the human sciences, and specifically for hermeneutic phenomenological work, writing is closely fused into the research activity and reflection itself.51 He sees language bringing experience into a symbolic form, and writing and reading are the ways in which we sustain a conversation. The challenge of writing in phenomenological human science is that quality is more important than quantity and the process of writing involves more than merely communicating information. The textual quality or form of our writing cannot be separated from the content of the text.52 In the process of recording the interview content, analysis and discussion of the themes of the 14 interviews, I will create such a conversation to the best of my ability.

5.6 Methods chosen for the research

In using a multi-method approach (interviews, focus groups, participatory action) attention has been paid to congruence and internal consistency with the epistemology and chosen methodologies (IHP and PAR). These methods also provide the pathways which will serve the final product of this particular research. Such an approach provides choice and empowerment for research participants, reinforcing autonomy in choosing how and whether to participate.53 This was a significant factor for this research design in order to encourage people to participate and contribute in ways most conducive to them.

Swinton and Mowat also argue for a fluid and flexible use of such methods, arguing that the most effective way a practical theologian can use qualitative research methods is by developing an eclectic and multi-method approach. This takes the best of what

51 van Manen, Researching Lived Experience, 125. 52 van Manen, Researching Lived Experience, 111-133. 53 Ann Taket, “The Use of Mixed Methods in Health Research,” in Research Methods in Health, ed. Pranee Liamputtong (Melbourne: Oxford University Press, 2013), 326.

159 is available within the accepted models, but is not necessarily bound by any one model.54 Denzin and Lincoln also confirm that multiple methods assist validation:

The use of multiple methods, or triangulation, reflects an attempt to secure an in-depth understanding of the phenomenon in question. Objective reality can never be captured. We can know a thing only through its representations. Triangulation is not a tool or a strategy of validation, but an alternative to validation. The combination of multiple methodological practices, empirical materials, perspectives and observers in a single study is best understood, then, as a strategy that adds rigor, breadth, complexity, richness and depth to any inquiry.55

The three methods of gathering information will now be outlined, providing the basis for a description of the research design and its application in Chapter 6. The methods are phenomenological interviewing, focus groups and participatory action.

5.6.1 Phenomenological interviewing method

This was the principal method used for the 14 narratives and best served the research’s first question:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

Irving Seidman outlines four themes providing the rationale for an approach which focuses on human experience and the meaning people make of that experience:

(i) Phenomenology stresses the transitory nature of human experience. Human lives are bound by time and the “will be” becomes the “is” and then the “was” in an instant. In searching for the essence of lived experience, the “is”, which is most important to a phenomenological perspective, is also inherently problematic.

(ii) The goal of phenomenological interviewing is to come as close as possible to understanding the true “is” of the interviewee’s experience from their

54 Swinton and Mowat, Practical Theology and Qualitative Research, 50. 55 Denzin and Lincoln, “Introduction: The Discipline and Practice of Qualitative Research,” 5.

160 subjective point of view. It is importnat to be modest in expectations as it is never possible to perfectly understand another person.

(iii) Because a phenomenological approach focuses on the “lived experience” it is difficult to be precise as it is a reconstruction of the experience. Phenomenological interviewing strives to make the “was” as close as possible to the “is”. Another inherent complexity in seeking the essence of lived experience is the use of language: the words used to guide the interviewee and the words they use to respond.

(iv) Phenomenology is the descriptive study of lived experience. By asking interviewees to reconstruct their experience and reflect on its meaning, the phenomenological interviewer encourages interviewees to engage in an “act of attention” that allows them to consider the meaning of a lived experience.56

The application of this method comprised in-depth, semi-structured interviews, according to Seidman one of the best ways to obtain rich descriptions of experience. Interviews provide the structure for participants to share stories, thoughts and feelings about the phenomenon. Chapter 6 outlines ten questions, based on the research of Swinton and Powrie, which explored a range of dimensions associated with the phenomenon of spirituality (value, meaning, connectedness/relationships, hope, transcendence, existential search for meaning and purpose).57

5.6.2 Focus group method

Focus groups provide the advantages of gathering information more quickly and economically than individual interviews. They also enable informants to react to and build upon the responses of other group members, especially important if the researcher wishes to observe participants’ responses and dynamics. Victor Minichiello et al refer to the purpose of focus groups as also tied to explicit political underpinning goals – such as ‘feminist research, action research and research conducted by

56 Irving Seidman, Interviewing as Qualitative Research: A Guide for Researchers in Education and the Social Sciences (New York: Teacher’s College Press, 2013), 16-19. 57 Swinton and Powrie. “Why are we Here?”, 15-67.

161 members of minority ethnic groups studying their own group.’58 This political purpose was expressed in the current research when results of the 14 interviews were shared with the research’s Reference/Expert Group from VALID’s Self Advocacy network to: (i) collaborate the results and (ii) to engage this group in potentially developing an organisational ‘Statement of Spirituality’ as an action research response to initial findings. Detailed in Chapter 6, this was congruent with the second question:

(ii) How can the disability services sector respond? What action is needed?

5.6.3 Participatory action research method

An increasing number of disability-related research projects are of an action-research nature and PAR recognises the need for cooperative partnerships where participants actively contribute to processes of action and change. As members of an organization, they also contribute to the collective voice of the organization in seeking to develop new knowledge that addresses and offers solutions to important practical problems.

Whilst the interviews were the primary source of this new knowledge, without a process of careful engagement with the organization at all levels (see Chapter 6), permission may not have been granted to undertake interviews or opportunity given for follow-up engagement to address the research’s second question:

(ii) How can the disability services sector respond? What action is needed?

This method generates an essential collaborative process of empowerment and engagement, increasingly practised within the fields of practical theology and qualitative research.

5.7 Method used to analyse interviewees’ responses (IPA)

Whilst this chapter has focussed on methods of gathering of data it is also important to describe methods of data analysis (see Chapter 7), namely Interpretive Phenomenlogical Analysis (IPA). IPA is an approach to qualitative research with an

58 Victor Minichiello “et al.” In-depth Interviewing: Principles, Techniques and Analysis (Melbourne: Longman Cheshire, 1995).

162 idiographic focus that offers insights into how a given person, in a given context, makes sense of a given phenomenon. Usually these phenomena relate to experiences of some personal significance.59

IPA frames research as a dynamic process with an active role for a researcher who attempts to gain an ‘insider’s perspective’. However this cannot be done directly or completely, it is complicated by the researcher’s own conceptions as they make sense of the other’s personal world through a process of interpretative activity. Thus a two- stage interpretation process, or a double hermeneutic, is involved. The participants are trying to make sense of their world and the researcher is trying to make sense of the participants trying to make sense of their world.60

For Sherrill Conroy this hermeneutic spiral corresponds to Heidegger’s oft-used metaphor of “coming to a clearing in the woods” as a way of coming in touch with an enlightened interpretation of the world. Interpretive research follows the twists and turns of the terrain we traverse and new information, understandings and meaning develop through the interpretive process. As someone who revels in bushwalking and being in the natural realm, I was particularly drawn to Conroy’s likening of this process to that of people placing:

… their footprints on the world and in the world in the dance of life. Footprints are unique, but they blend with the earth’s contours or with others’ tracks and fade or stray from a pathway in the woods. Metaphorically I use “footprints” to refer to an individual’s contribution to the hermeneutical spiral. In the research process, as in life itself, many footprints join together through interpretation to create a new pattern of understanding.61

Consistent with this double hermeneutic, for Jonathan Smith and Mike Osborne IPA combines an empathic hermeneutics with a questioning hermeneutics. IPA, whilst trying to understand the insider perspective, can also involve asking critical questions of the participants’ texts: “What is the person trying to achieve here?” “Is something

59 Jonathan A. Smith, “Hermeneutics, Human Sciences and Health: Linking Theory and Practice,” International Journal of Qualitative Studies on Health and Well-Being 2, (2007): 3-11. 60 Jonathan A. Smith and Mike Osborn, “Interpretative Phenomenological Analysis,” in Interpretative Phenomenological Analysis: Theory, Method and Research, eds. Jonathan A. Smith and Paul Flowers and Michael Larkin (Los Angeles Sage Publications, 2009), 53. 61 Sherrill A. Conroy, “A Pathway for Interpretive Phenomenology,” International Journal of Qualitative Methods 2, no. 3 (September, 2003): 2-5.

163 leaking out that wasn’t intended?” “Do I have a sense of something going on here that maybe the participants themselves are less aware of?” Allowing for both aspects in the inquiry, empathy and questioning, leads to a richer analysis and will do greater justice to the totality of the person. IPA also acknowledges a debt to symbolic interactionism with its concern for how meanings are constructed by individuals within both a social and a personal world.62

Smith and Osborne propose that IPA is not so much concerned with the testing of pre- determined hypotheses as with exploring, flexibly yet in detail, an area of concern. IPA studies are typically conducted on small samples up to fifteen people, but sometimes more. Sample size is small because the detailed case-by-case analysis of individual transcripts takes a long time, and the aim of the study is to say something in detail about the perceptions and understandings of this particular group rather than prematurely make more general claims. IPA researchers usually look for a fairly homogenous sample for whom the research questions will be significant. This is best done through purposive sampling and a flexible data collection instrument such as, according to Smith and Osborne, the semi-structured interview. This allows researcher and participant to engage in a dialogue whereby initial questions are modified in the light of the participant’s responses and the investigator is able to probe interesting and important areas which arise.63 The recommended sample size, its homogeneity and use of semi-structured interviews are all consistent with the parameters of this research as detailed in Chapter 6.

IPA assumes that the analyst, the researcher, is interested in learning something about the respondent’s world. Meaning is not always transparently available and needs to be obtained through a sustained engagement with the text and a process of interpretation. Following the taping and transcription of participants’ texts, analysis performs in-depth and repeated reading of individual transcripts, in order to discern

62 Schwandt, The Sage Dictionary of Qualitative Inquiry, 283-284. Symbolic interactionism is based on humans acting towards objects and people in their environment in ways prompted by the meanings derived from them. Such meanings derive from the social interaction (communication) which is symbolic because we communicate through language and symbols. Such meanings are established and monitored through an interpretive process. 63 Smith and Osborn, “Interpretative Phenomenological Analysis,” 53-59.

164 “similarities and differences, echoes, amplifications and contradictions in what a person is saying.”64

The final stage in analysing a transcript is to produce a list of themes which most strongly capture the respondents’ concerns on the particular topic. Instances of each theme are noted according to key words or phrases, along with the page number or timing of the interview. Through an exhaustive and iterative process of finding connections, clusters of themes emerge with some developing into superordinate concepts.

Each transcript subsequently undergoes the same process, with the researcher discerning repeating patterns and acknowledging new issues emerging. Convergences and divergences in the data are noted, recognising that accounts from people are similar but also different. Once all transcripts are analysed, a final table of themes is constructed. This forms the basis for ongoing discussion and interpretation of the phenomenon.65

I chose IPA because it enables an incisive and overt understanding about the significance of the phenomenon of spirituality for this particular cohort of people. IPA as described above is congruent with Interpretive Hermeneutical Phenomenology (IHP) and the analysis of the interviewees’ data conformed closely to the IPA approach and stages, with one significant variation. Smith and Osborn suggest IPA:

… is not a prescriptive methodology. It is a way of doing IPA that has worked for us and our students, but it is there to be adapted by researchers, who will have their own personal way of working. … qualitative analysis is inevitably a personal process, and the analysis itself is the interpretative work which the investigator does at each of the stages.66

Whilst retaining the principles and approach of developing themes and superordinate themes as espoused by Smith and Osborne, I have exercised freedom and adaptation of their approach. Their process identifies themes and develops superordinate themes from an initial case and then applys those themes to the subsequent analysis of cases,

64 Smith and Osborn, “Interpretative Phenomenological Analysis,” 66-67. 65 Smith and Osborn, “Interpretative Phenomenological Analysis,” 67-68. 66 Smith and Osborn, “Interpretative Phenomenological Analysis,” 67-68.

165 looking for convergences and divergences. Rather than on a case by case basis, given this research was working from a pre-determined list of questions, the decision was made instead to develop themes from the responses to each individual question (resulting in a total number of 22 from the 10 questions) which were then categorised into four major themes leading to the final two superordinate themes.

Consistent with the multi-method approach adopted, analysis of the interviewees also included a quantitative chart of time spent by interviewees on each question, and a summary of time spent per question as a percentage (Tables 2 and 3, section 7.2). This provided an indicative weighting of topics considered important to the interviewees and provided congruence with the two superordinate themes.

5.8 Action research and people with intellectual disability

As discussed in Chapter One, the desegregation of people with disability, and demands for inclusion in all dimensions of community life, has resulted in a re- examination of research practices related to people with disability. Consistent with action research’s focus on marginalized communities, and the disability rights mantra of ‘nothing about us without us’,67 we have noted that an increasing number of disability-related research projects are of an action-research nature.68

Underpinning this approach to action research into disability, is the social model of disability (see Section 1.4.1). This model proposes that many of the difficulties encountered by people with intellectual disability stem not from their lack of cognitive or intellectual ability, rather, from society’s attitudes towards difference. Within a society which uses criteria of independence, productivity, intellectual prowess and social position to judge the value of ‘real’ human beings, people with intellectual disability will be excluded and seen as people of lesser worth. According to this model, it is not the individual’s condition that disables them, rather, society is the source of disability because it develops systems and barriers which downgrade certain people.69

67 James Charlton, Nothing About Us Without Us: Disability, Oppression and Empowerment (Berkeley, CA, University of California Press, 1998). 68 Jan Walmsley, “Normalisation, Emancipatory Research and Inclusive Research in Learning Disability,” Disabiity and Society 16, no. 2 (2001): 187-205. 69 Swinton and Mowat, Practical Theology and Qualitative Research, 231-232.

166 The passive role of people as subjects of research is rejected by a small, albeit increasing number of researchers engaging in action research with people with intellectual disability. They emphasise the importance of sharing control over research, believing this is beneficial to the population of people concerned, and leads to better quality research outcomes.70

Erin Stack and Katherine McDonald’s literature review of action research with adults with intellectual disability focused on social issues important to them and discovered that in the seven year period 2005 – 2012 just 21 studies had been undertaken, predominantly in the United Kingdom and the United States. Social issues researched included transition to the community, self-advocacy, health, education, employment, support, life histories, quality of life and social relationships. They found that whilst there have been many different approaches, and degrees to which cooperation and planning have been collaborative, this pioneering area of research needs to be encouraged further, notwithstanding inherent challenges. These include the need for researchers to take a values stance and pursue action, build relationships with people with disability, share control over research, be reflexive, address complex ethical considerations of power, and dedicate increased time and resources.71 These and other ethical issues will be addressed in the research design.

Regarding equal partnerships and power sharing in such action research with adults with intellectual disability, Stack and McDonald’s survey highlights a differentiation among researchers who use PAR. Some use participatory methods which provide first-hand accounts of views and experiences and others use participatory approaches which involve equality and mutual sharing over the nature and direction of the research.72

Whilst I have used semi-structured interviews, focus groups and participatory action, the overall aim was to encourage maximum possible equality in the process. The best

70 Christine Bigby and Pattsie Frawley, “Reflections on Doing Inclusive Research in the “Making Life Good in the Community” study,” Journal of Intellectual and 35, no. 2 (2010): 53-61. 71 Erin Stack and Katherine E. McDonald, “Nothing About Us Without Us: Does Action Research in Developmental Disabilities Research Measure up?” Journal of Policy and Practice in Intellectual Disabilities 11, no. 2 (June, 2014): 83-91. 72 Stack and McDonald, “Nothing About Us Without Us,” 87.

167 known model of high-level participation is Sherry Arnstein’s “ladder”, first coined to describe citizen participation and now applied to develop an overview of participation levels in research projects.73 The critical question in determining whether a project fulfils the basic criterion for classification as participatory research, is that of who controls the research. At the lowest rung is what is called “pseudo participation” in which briefing by researchers may facilitate participation at a later date.74

To distinguish the various types of participation, apart from research projects conducted exclusively by the affected persons themselves, Jarg Bergold and Stefan Thomas emphasise the importance of transparency in the research process:

To distinguish the various types of participation, we consider it more appropriate to specify the decision-making situations in the research process, and the groups of participants, and to disclose who, with what rights, at what point in time, and with regard to what theme, can participate in decisions.75

Along this continuum of rungs on the ladder, whilst the research was inititated by myself in the pursuit of new knowledge and policy change, at all times the approach sought equal participation and collaboration with the co-researchers at VALID. That is why this particular advocacy organisation was chosen because it embodies the principles of power sharing and empowerment of its network members. The approach of this research project, enshrined in the research design and decision-making processes, and referred to by Bergold and Thomas above, will be detailed in Chapter 6.

5.9 Hospitality, conversion and critical faithfulness

In refocussing myself as a practical theologian addressing a specific situation, Swinton and Mowat propose that theology and qualitative researchers require three things: hospitality, conversion and critical faithfulness.

Hospitality is an adopted attitude where the practical theologian, as a Christian theologian, welcomes and sits comfortably with qualitative methods. This offers

73 Sherry Arnstein, “A ladder of citizen participation,” Journal of American Planning Association 35 no. 4 (July 1969): 216-224. 74 Bergold and Thomas, “Participatory Research Methods,” 6. 75 Bergold and Thomas, “Participatory Research Methods,” 6.

168 hospitality to other forms of knowledge and pursues the reflective conversation about the research topic because the purpose is:

… to create a context wherein the voice of qualitative research can be heard, respected and taken seriously, but with no a-priori assumption that theology needs to merge, follow or fully accept the perspective on the world that is offered to it by qualitative research.76

As a Christian theologian first and foremost, this attitude of hospitality will be adopted and welcomed in the pursuit of knowledge and insight that people ascribe to their spirituality. The chosen qualitative methodologies and methods enable engagement and information-gathering for theological reflection and action.

The metaphor of conversion sees qualitative research as grafted in to God’s redemptive intentions for the world. It is used to make God’s self known within the Church and from there into the world. In using this metaphor of conversion, qualitative research becomes an instrument of the divine purpose which helps develop our understanding of God and the practices of the Church. Hospitable conversation and critical conversion enable the practical theologian to express critical faithfulness in the pursuit of truth and divine revelation. This enables the practical theologian to:

… recognise that truth, is at least to an extent, emergent and dialectic; emerging from committed, critical dialogue between situations, Christian tradition and the knowledge that we gain inter alia, through the use of qualitative research methods.77

These three elements are extremely helpful in asserting and explicating the primacy of my role as a practical theologian: (i) being true to the tradition in which I have been formed and within which I reflect; (ii) honouring the people and situation under research; (iii) and being aided in that pursuit by qualitative research methods.

76 Swinton and Mowat, Practical Theology and Qualitative Research, 91. 77 Swinton and Mowat. Practical Theology and Qualitative Research, 94.

169 5.10 Conclusion

The discussion of the ‘worlds’ of practical theology and qualitative research (Chapters 4 and 5), sought to establish a congruent rationale for the research through a description of epistemological foundations and the selection of appropriate models, methodologies and methods. I have established how pastoral theology can effectively use appropriate qualitative methods to explore the meaning people attribute to their spirituality. Like the bricoleur, I have endeavoured to piece-together a quilt from relevant literature within each of these ‘worlds’, a quilt which will serve the purpose of coherent and cohesive research as described by Denzin and Lincoln for whom the “interpretive bricoleur produces a bricolage – that is, a pieced-together set of representations that are fitted to the specifics of a complex situation.”78

Through qualitative research, inherently multi-method in focus, as a bricoleur I will develop a dialogical text which moves from the personal to the political, the local to the historical and cultural. The methods described above enable different voices, different perspectives, points of view and angles of vision to be represented. This is an intentional strategy that adds rigour, breadth, complexity, richness and depth to any inquiry.

78 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 4.

170 Chapter 6: Research Design and Implementation

6.1 Introduction

This study emphasises the importance and effectiveness of engaging people with intellectual disability in research, people who are rarely viewed as the experts in their own experience.1 This Chapter now outlines the processes of research design and implementation, noting that relational and practical engagement with VALID Inc. began prior to both Confirmation Panel and Human Research and Ethics Committee (HREC) approval. In developing trust with VALID, the PAR approach facilitated letters of support to both these Panels.

The chapter will detail the role of VALID’s Self-Advocacy Network (SAN) which provided the Expert Group for the research. Processes of pre-recruitment and recruitment will be described along with interview procedures for the 14 interviewees. This will include a Pilot Interview that includes a rationale for the 10 interview questions. Transcription and post-transcription of feedback from the Expert Group will be detailed, concluding with discussion of ethical considerations.

6.2 Process of engagement with VALID

The research project was affiliated with the state-wide advocacy organization VALID which advocates for a range of rights-based issues and is represented on the national body Inclusion Australia.2 Based in Fitzroy, Melbourne, it is the largest such advocacy organization in Victoria, with its Board of governance including members who identify with intellectual disability. The Board is informed and guided by its constituent body, the Self-Advocacy network (SAN), which meets monthly with the support of three staff members. A formal agenda and topics of interest and concern are raised by network members. This Network, with fluctuating numbers of 6 to 15 members in attendance, provided oversight and an Expert Group. Section 6.3 will outline this in more detail.

1 Paul Ramcharan and Gordon Grant, “Views and Experiences of People With Intellectual Disabilities and Their Families: (1) the User Perspective,” Journal of Applied Research in Intellectual Disabilities 14, (2001): 363-384. 2 Inclusion Australia was previously named the National Council on Intellectual Disability (NCID).

171 Prior to the Ph.D. Confirmation Panel, a letter to the Chief Executive Officer (CEO) of VALID outlined the purpose of the research and sought permission to partner with the organization. The CEO, whilst declaring no personal faith affiliation, nonetheless saw that for others this might be important, that it was a right to be expressed and that participation in a faith context of choice should not be denied. The CEO informed me that collaboration with VALID and access to VALID networks would need to be in partnership with the SAN and himself.

VALID organizes an annual state-wide Conference called ‘Having-A-Say’, and in 2013 I conducted a 30 minute workshop as an awareness-raising contribution (Appendix 1) about the importance of spirituality. This was the first time the topic had been included in the program. It was also an opportunity to begin to develop trust, based on my existing relationships, openness to a diversity of opinions, and rejection of proselytization. Proselytizing is seen as coercive, potentially abusive and counter to the research aims. Use of the Easy English format of communication (details below) with pictograms of symbols and simple sentences/words, used to illustrate the presentation, was a requirement of all conference workshops. My presentation incorporated information gained from the report ‘To Belong I need to be Missed’,3 which I had undertaken as part of my employment. VALID’s CEO attended that workshop and affirmed my approach.

The presentation highlighted the many ways of expressing spirituality including formal religion (multi-faith) through to a range of individualized expressions. The possibility that people may have no faith was acknowledged and affirmed. My introductory remarks acknowledged that whilst there have been and are examples and stories of people with intellectual disability having positive experiences within faith communities, there are also many stories of people being shunned and stigmatized due to charitable and paternalistic actions.

Some symbols and items were used to illustrate concepts and stimulate discussion: a wooden rainbow, a bowl of Australian desert sand, a candle and natural elements such

3 Outlined in Chapter 3.6.5, this was produced in Easy English. The three key findings in pictogram form were included in the presentation.

172 as rocks and shells. Feedback from the small group (12) was positive with one attendee noting:

I think it was good to have an open approach to what faith might mean. It’s good to be broader than the usual question of whether someone does or does not believe in religion – things don’t really go any further after that.

Further dialogue with VALID’s CEO ensued. I requested and received approval for engagement with the SAN, as this was critical to the research’s success.

6.3 Self-Advocacy network and Expert Group

Immediately following the February 2013 Conference, I initially presented the research questions to SAN to see if they would endorse the research’s importance and give permission to commence recruitment amongst VALID’s extensive community networks. Endorsed by the CEO, this group in turn nominated the Expert Group, to which I returned in 2015 and 2016 with a summary of the results of the 14 interviews, seeking feedback and validation of the results. This process will be described in section 6.9.

The Expert Group was consulted and endorsed the questions to be asked, including an additional eighth question regarding people’s experiences of the natural realm, and two final questions for debriefing purposes. Along with the staff members, the Group provided practical guidance related to seeking interviewees. Most importantly, arising from the early research results, the group provided feedback and agreement for the subsequent development of VALID’s ‘Statement of Spirituality’. This significant Statement was endorsed by VALID’s Board of governance, becoming the first known Australian non-faith-based organisation in the disability sector to produce a policy statement about the importance of spirituality.4 More details about its significance in negotiating recognition of spirituality with government and faith communities will be outlined in Chapter 10.

VALID has well-developed relationships with accommodation and day-support program sectors, both metropolitan and rural. VALID’s four metropolitan networks

4 https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf accessed 16 February, 2018.

173 (north, south, east, west), meet monthly to share relevant information and activities. Approximately 260 people regularly attend, most people travelling by bus with day- program staff. This audience was targeted to provide a purposive sample of up to twenty people for the interviews.

The role of developing trust with the SAN, the research’s Expert Group, the whole, organisation and in turn, prospective research participants, cannot be overstated. Rob Moonen et al note that “[m]ore than with any other user group, it is highly important that they trust you and feel comfortable to interact with you.”5 Trust was developed over a considerable time and was the key ingredient in being able to address the two research questions:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

(ii) How can the disability services sector respond? What action is needed?

Without the careful establishment and maintenance of trust over a considerable time, the PAR method is neither possible nor authentic. The process and methods of recruitment are outlined below.

6.4 Contextualising the research: pre-recruitment processes

With the endorsement of the SAN 6 (Appendix 2) the CEO agreed that I liaise with two staff members of VALID to devise an optimal process for recruitment of interviewees. The two employees were ideally placed in that they supported the work of the SAN and organised the monthly metropolitan gatherings

During March and April 2013, I undertook a series of presentations to the four metropolitan networks which have average attendance of 40 (north), 115 (south), 75 (east) and 30 (west): 260 in total. The presentation given at the 2013 ‘Having-A-Say’ Conference workshop was repeated at each of these gatherings using Easy English

5 Rob Moonen “et al.” “Methods and Challenges for Doing Research with Intellectually Disabled People: An Ongoing Empirical Study” (from an ongoing empirical study aiming to introduce methods and target challenges of doing user-centred research and design with people with intellectually disability at Laurea University of Applied Sciences: Finland, 2012), 5. 6 Image included with permission of VALID’s Self-Advocacy network.

174 language and pictograms (Appendix 3). The purpose was to generate interest and inform people that I hoped to undertake interviews with interested network members.

Presenting to these networks also provided an opportunity to communicate that I had commenced doctoral studies and, in the expectation of approval by the HREC of the then-named Melbourne College of Divinity an approved recruitment process could commence.7 A similar presentation would be provided by VALID staff, with a request for interested interviewees. The rationale for these initial presentations in March/April 2013 was that when the VALID staff subsequently presented the information for recruitment purposes, it was hoped respondent numbers would be enhanced owing to interest having been previously piqued (detail in Section 6.6).

The afore-mentioned conference presentation and follow-up presentations were done prior to formal HREC as a normal part of pre-candidature relationships and practice. The rationale was two-fold: the CEO advised that it was important to factor in long lead-times due to demands on organizational staff to assist with practical arrangements and also to develop trust amongst staff and network members. This would also be advantageous from a researcher perspective in that the research design presented to the HREC had the full support and endorsement of VALID. Endorsement to recruit and interview network members was also formally sought from the CEO (Appendices 4 and 5). This correspondence was also included in the application to the HREC.

6.5 Human Research and Ethics Committee (HREC)

The ethics application included all the documents to be used in the recruitment process, including the names of the two VALID staff members for return of Consent forms. These documents formed part of an Information Pack:

• Participation Information Statement (PI), including an Easy English version (PI - EE) (Appendices 6 and 7). The PI contained more detail than the PI – EE version to brief any adult staff/family member acting in the capacity of an ‘agent’. The agent would sign consent on behalf of any potential interviewee

7 The University of Divinity is constituted by the University of Divinity Act 1910 of the Parliament of Victoria. The Act, recently amended in 2016, establishes the University Council and empowers it to confer degrees and award diplomas and certificates in Divinity and associated disciplines.

175 unable to read the information or write a signature. An agent needed to know in detail what the research entailed, convey this to the person interested and receive verbal agreement to sign on their behalf. This legal process was discussed with and verified by legal opinion and advice from the Office of the Public Advocate.8 It was also endorsed by the HREC legal representative. Two of the 14 interviewees subsequently used an ‘agent’.

• The Participant Consent Form (CF) was produced in an Easy English format (Appendix 8).

Two other documents were prepared. Firstly the ‘Revocation of Consent’ form in case someone wished to change their mind after returning a signed Participant Consent Form (CF) (Appendix 9). Secondly, because of limited time and resources, interviews were capped at 20.

There was a letter of apology in case 20 or more people registered interest in being interviewed; decisions would need to be made about who may be omitted (Appendix 10). The preparatory work of the ‘Information Pack’ and additional documents was approved by the HREC on 9 April 2014 so that recruitment and interviewing could commence.

6.6 Recruitment process

Given the time-lapse between the 2013 presentations at the metropolitan network meetings, and planned presentations by staff in July/August 2014, an article (including my photo) appeared in VALID’s monthly newsletter. This was distributed to all network members, reminding them of my presentation in 2013, and of the impending presentation by VALID staff (Appendix 11).

To maintain objectivity and avoid real or perceived possibilities of suggestibility or coercion during recruitment, VALID staff provided the follow-up presentation on my behalf to each of the four monthly metropolitan network meetings (Appendix 12).

8 Discussion held on 23 December 2013. The Victorian Office of the Public Advocate (OPA), via guardianship and advocacy, promotes and safeguards the rights and interests of people with intellectual impairment, mental illness, brain injury, physical disability or dementia.

176 Interested people were given an ‘Information Pack’, which included both the PI and CF (Appendices 6, 7 and 8).

Staff presentations (Appendix 12) during July/August 2014 reminded attendees of my presentation in 2013. Prospective participants were informed about the opportunity to register their interest with VALID for an interview and the need to return a signed Consent Form. This could be done either at the conclusion of that particular presentation, to the designated staff member, or by returning the signed document in a stamped envelope to VALID within the following two weeks. In either instance, VALID’s staff were available for any clarification on the day; alternatively, over the following two weeks they could discuss the document with their Centre staff/family, or VALID staff, to assist with decision-making. The staff maintained a record of ‘Information Packs’ distributed, and the contact details of people expressing interest (Appendix 13). VALID personnel were involved at all points.

Following the staff presentations, a month later I received from VALID a list of 16 prospective interviewees with signed Consent Forms. Arrangements for a suitable time and place for an interview were then made with the person designated as the contact person on the Consent Form (interviewee/staff support person/family member).

Of the 16 returned Consent Forms two people subsequently changed their mind, creating a research cohort of 14: nine men, and five women, ranging in age from 26 to 50, with a mean age of 41. There was no cost to the interviewees to participate, nor was any inducement offered to participate; they agreed to have a conversation of approximately 40 minutes with me, having previously heard me speak in 2013 at a metropolitan network gathering.

Given Melbourne’s geographic spread and some complex scheduling with activities and people’s availability, the interviews were undertaken over a period of approximately four months. In the PI people were encouraged, if they so wished, to bring any photos, artworks, symbols, certificates or items that would assist them in talking about the research questions.

The 14 people came from a range of personal circumstances. All attended a supported day program service, and in addition, some participated in either part-time employment

177 or volunteering contexts. They lived in a range of housing circumstances: supported independent units, shared community residential units or at home with their family of origin. Each one had cognitive capacity to agree to participate, and to contribute to a conversation in which they were asked a series of questions related to their life experience with a focus on the topic of spirituality. I anticipated that each person would have experienced a range of social phenomena including stigmatization, exclusion, disconnectedness, loneliness. The principal inclusion criteria were interest in the topic, willingness to engage in a conversation (semi-structured interview), and prior submission of a signed consent form agreeing to a number of understandings outlined in the next section.

6.7 Interviewing processes

Swinton and Powrie’s account of interviews with 19 people with intellectual disability and carers about their spirituality was outlined in Section 3.6.2. The first of its kind using PAR to research this topic, the meaning and significance of spirituality was explored as well as how carers perceived the spiritual dimension of people’s lives.9

They used the following interview schedule:

1. What is spirituality? (a general question to see whether the term elicited a sense of meaning or resonance)

2. What makes you feel good about yourself? (value)

3. What do you like best about your life? (meaning)

4. Are friends important to you? Why? (connectedness/relationships)

5. What do you want to do with your life? (hope)

6. Do you think there is a God? (searching for the transcendent)

7. Why do you think you are in the world? (existential search for identity and purpose).10

9 Swinton and Powrie, Why are we Here? 10 Swinton and Mowat, Practical Theology and Qualitative Research, 234-238.

178 These questions provided the basis for this research project, with the addition of an eighth:

8. Do you like being connected to nature? (awe and wonder).

The rationale for this additional question is found in associated literature where four sets of relationships are broadly consistent with spiritual well-being (SWB):

• Relation with self, in the Personal domain

• Relation with others, in the Communal domain

• Relation with the environment, in the Environmental domain, and

• Relation with transcendent Other, being in the Transcendental domain.

John Fisher offers a definition of spiritual well-being (SWB) as “the affirmation of life in relationship with God, self, community and environment that nurtures and celebrates wholeness.”11 His four-domain model of SHALOM (Spiritual Health And Life- Orientation Measure) is a 25-item instrument, used in over 900 studies, and designed to measure how people rate their personal experience of relationship with these domains of spirituality.12

Swinton and Powrie’s interview schedule does not overtly recognise the fourth domain’s important relationship between spiritual well-being and environment. Questions 2, 3, 5 and 7 focus on Self, Question 4 focuses on Community, and Questions 1 and 6 focus on Transcendence. Question 8 has been added to inquire about the impact of the natural realm in people’s lives. The Victorian Government’s Health and Well-Being Plan 2015-19 cites the positive relationship between the natural environment and good physical health and wellbeing, including spiritual wellbeing.13 Additionally, a recent literature review synthesising research on nature-based

11 National Interfaith Coalition on Ageing. Spiritual well-being: A Definition (Athens, GA, USA: NICA, 1975). 12 John Fisher, “The Four Domains Model: Connecting Spirituality, Health and Well-Being,” Religions 2 (2011): 17-28. 13 Victorian Public Health and Well Being Plan 2015-19 (Melbourne: Victorian Government, September 2015), 46-47.

179 recreation, spirituality and people with disability, concluded that the spiritual benefits for people with disability are similar to those of the general population.14

In addition to the eight questions (the primary source of data), towards the conclusion of each interview I asked two final questions:

(9) Is there anything else about spirituality, or God or religion you would like to talk about?

(10) Is there anything in your life you would like to change to make it better?

Question 9 provided a final opportunity for any further information, or to speak further about a topic that was of interest or significant. Question 10 was open-ended and provided an opportunity to express any wishes for an enhanced quality of life.

Semi-structured, in-depth interviews are effective in obtaining the rich description of experiences desired for this study.15 Interviews enabled participants to share stories, thoughts and feelings about the phenomenon and were the primary method of data collection. They were conducted at either a person’s residence or the day program they attended. The choice of location was determined by the need for the person to feel comfortable in familiar surroundings without having to adjust to another context. An unfamiliar setting was considered more likely to create distractions at the expense of focussing on the interview content.

At each location, family and/or staff were present, and in pre-interview conversation I reiterated that I wished to hear primarily and directly from the person with intellectual disability. This was to offset the possibility that someone may, out of habituation, speak on that person’s behalf. This request was respected and any conversation with a third party only clarified details or replies I had difficulty in understanding.

At the commencement of the interview, after a verbal summary of the task and the research’s purpose I asked the person to verbally confirm they were willing to continue. It was emphasized there were no right or wrong answers, that I was interested in what they thought/felt/experienced in their own lives, and that it was a confidential

14 Paul Heintzmann, “Nature-Based Recreation, Spirituality, and Persons with Disabilities,” Journal of Disability and Religion 18, no. 1 (2014): 97-116. 15 Minichiello et al., In-Depth Interviewing, 68.

180 conversation. They would not have to answer a question if they did not wish to and could cease the interview if so desired. During one interview, the person said they were not feeling well and we stopped. She agreed to a follow-up interview which was subsequently arranged and completed.

Each person agreed to a digital recording, subsequently transcribed verbatim. I indicated that I would send them a copy of the transcript if requested and five people did so request. If people wished to correct any details, feedback could be provided however none was received. Interviews ranged from 25 to 45 minutes, with a mean length of 37 minutes. The schedule and order of questions was the same for each person. This provided ease of data analysis when developing themes. The interview content, with open-ended questions, was focussed on the central research concerns, but the type of questioning and conversation allowed for enhanced flexibility. This was especially important because people with intellectual disability often have difficulty with abstract concepts and careful explanations are needed.16

Three people took up the invitation to bring symbols, photos, artworks or other items to assist in answering the questions:

• A Certificate acknowledging their first Holy Communion.

• Two small figurines dressed in white robes: one depicting Jesus, the other the Pope.

• A collection of items which one interviewee gave me to keep, including a photo of the interviewee from 22 years earlier when working as a supermarket shopping trolley attendant. Copies of miscellaneous documents included: (i) a list of the best workers between 1976 and 1995 at various places he had worked; (ii) an image of a female netballer and his description of being a fan of that sport since the age of 16; (iii) a list of Australian politicians and which Australian Rules football team they support; (iv) a list of predictions by Nostradamus; (v) a list of predictions by the interviewee and; (vi) a description of his 50th birthday party (attendees, music, food and drink, presents received).

16 Maureen D’Eath “et al.” Guidelines for Researchers when Interviewing People with an Intellectual Disability, National Federation Research Sub-Committee, National Federation of Voluntary Bodies, Oranmore Business Park, Galway, Ireland, (July, 2005), 2.

181 One interviewee asked me if I had “… a Bible … like a book about Jesus,” and requested I send him something. I made no undertaking at the time to do so, but subsequent contact with staff suggested he was expecting something, so I posted a booklet with Christian imagery which was well-received.

During each interview I bracketed any thoughts of previous interviews with other research participants, and any assumptions about possible answers. This preparation sought to create a mind-set open to the uniqueness of each person’s stories and situation; listening and attending to the questions that appeared most important to them and exploring those in as much depth as possible.

A Pilot Interview was undertaken before commencing the interview series.

6.7.1 Pilot Interview

Approximately one month prior to the first research interview, I conducted a pilot interview with a young man interested in exploring the research questions. He is the son of a friend, is involved with a Christian faith community, and has some cognitive and speech impairments. The purpose was to gauge the weighting of time for each of the questions, based on the interviewee’s responses and interest shown.

For me, it also provided familiarization with the questions, an opportunity to practise inviting and open-ended conversation, with appropriate responses to comments. A feature amongst people with intellectual disability is that of induced acquiescence: the desire to please those perceived to be in an authority role, which may include a researcher/interviewer. M. Rapley and C. Antaki first reported a form of induced acquiescence where an interviewee changed their response when the initial answer was not immediately accepted by the interviewer. A delay in accepting the response or a re-phrasing of the question following a response was interpreted by the interviewee as an indication that their initial response was unacceptable or incorrect and this response was changed.17 The pilot interview was important in raising awareness to minimize any such acquiescence.

17 M. Rapley and C. Antaki, “A Conversation Analysis of the ‘Acquiescence’ of People with Learning Disabilities,” Journal of Community and Applied Psychology 6, (1996): 207-227.

182 6.8 Transcription of the 14 interviews

A verbatim transcription of each interview was filed digitally as soon as possible afterwards, a lengthy and exhaustive process providing opportunity to process and reflect upon the data, enhancing its subsequent analysis. Immersion in each person’s interview and responses started with this process, aided by recollection of their bodily and facial expressions. These recollections were annotated within the transcript. IPA was used to analyse the results. This typically centres on the text (section 5.7), so these additional observations of non-verbal responses also aided my understanding of what the interviewees were saying. Following transcription, I printed a hard copy of each interview for multiple readings. For IPA purposes this copy also became the document with columns down either side of the transcript for noting key issues about the research themes. This process will be described in Chapter 7.

6.9 Post-transcription feedback/‘Statement of Spirituality’

In 2015 and 2016 I presented the research findings at VALID’s annual conference, ‘Having Your Say’, for the purposes of seeking further feedback and reinforcement of the results. These presentations also maintained momentum and interest in the topic within the broader networks of the organisation (Appendix 14).

Once the results had been analysed and themes developed (Chapter 7) I returned on two occasions to the Expert Group for ‘member checking’ to correct errors and challenge any incorrect interpretations. The first one met on 26 May 2015 (Appendix 15). Members were invited to share how the results and themes of the 14 interviews aligned, or not, with their own experience and responses were collated and detailed (Appendix 16).

On the second occasion, I returned to seek guidance for the development of a ‘Statement of Spirituality’, as a means of addressing the second research question:

(ii) How can the disability services sector respond? What action is needed?

183 It was reasoned that if such a Statement was adopted by VALID as the major advocacy organisation in Victoria, such a key policy Statement would add credibility and ‘voice’ for the recognition of spirituality’s importance in the disability sector.

This second feedback session was considerably delayed owing to staff work priorities within VALID. Early 2016 the CEO and I were able to discuss this again, and I was invited to present the findings again to the Expert Group on 31 May 2016 (Appendix 17). This presentation differed in one respect to that of 26 May 2015. Towards the end I explored whether it was important for VALID to develop a policy statement based on the 14 interviewees’ feedback, and in doing so referred to the Statement developed by TASH.18 Two questions were posed:

(i) Where to from here?

(ii) Might we develop something similar together?

It was agreed this issue was important and I was requested to develop a Draft Statement for the Expert Group’s initial consideration (Appendix 18).

This Draft was discussed by the Expert Group, in my absence, and subsequently ratified as a policy document by VALID’s Board of Governance on 10 August 2016. This was a pivotal, preliminary component and outcome of the research, given the research question above. This ‘Statement of Spirituality’, produced in Easy English format, https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf (Appendix 20), was the first time in Australia that a non-faith-based organisation in the disability sector had developed such a policy position. VALID has placed the Statement alongside other policy statements about current issues affecting people with a disability.19 It has proved to be an invaluable document in ongoing advocacy and discussions with policy-makers to raise awareness and responsiveness to the

18 ‘TASH, an international advocacy association of people with disabilities, their family members, other advocates and people who work in the disability field, believes that all people with disabilities have the right to spiritual expression including the reflection upon and sharing of spiritual purposes for their lives. TASH further supports the right of individuals with disabilities to participate in spiritual expression or organized religion as they so choose and promotes the provision of any and all supports needed by people with disabilities to so participate.’ https://tash.org/ Accessed 20 November, 2018. 19 https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf Accessed 16 February, 2018.

184 importance of spirituality in people’s lives. Its use and impact for further research and practice will be discussed in detail in Chapter 10.

6.10 Research validity

In section 5.5.2 objections to the concept of validity in phenomenological research were discussed, noting considerable discomfort and some outright rejection of this criterion amongst social inquirers committed to constructivist, postmodernist, feminist and pragmatic perspectives.

Swinton and Mowat note that the issue of validity in qualitative research continues to be a matter of debate, also indicating that some qualitative researchers argue that validation is an inappropriate interpolation from the natural sciences: the requirement of normativity and generalisation being the antithesis of the essence of qualitative research in general, and hermeneutic phenomenology in particular.20

Whilst acknowledging the importance of this critique, they assert however that issues of rigour and validity are important to avoid the interpretative process diverging from the given ‘script’ in ways that are misleading, inappropriate and misrepresentative of the phenomenon being explored. To this end, with the object of qualitative research being to understand rather than explain, they draw on the concept of ‘trustworthiness’ to identify and define rigour within qualitative research. For Guba and Lincoln trustworthiness has three dimensions: credibility, auditability and fittingness and these three will now provide a validating framework for this research.21

(i) Credibility

Credibility refers to the confidence in the truth value or believability of the study’s findings.22 Credibility emerges from the richness of the data and its ability to resonate with others who have been through experiences similar to the ones being described. In phenomenological research a thick description seeks to capture the essence of the phenomenon in a way that communicates it in all its fullness. The process of writing,

20 Swinton and Mowat, Practical Theology and Qualitative Research, 121. 21 Guba and Lincoln, “Competing Paradigms in Qualitative Research,” 105-117. 22 Denise F. Polit and Cheryl T. Beck, Essentials of Nursing Research: Methods, Appraisal, and Utilization (Philadelphia: Lippincott Williams and Wilkins, 2006), 6.

185 reflecting and accurately interpreting the data is not simply epiphenomenal to data presentation and analysis but is a crucial part of the process.23

Credibility relies on validation from (i) participants and (ii) independent sources.

(i) The 2013 presentation at VALID’s annual ‘Having Your Say’ Conference laid the foundations for the research and provided the basis for trust and interest amongst VALID networks (Appendix 1). In 2015 and 2016, as part of validating the research results, I presented the results at the same Conference in a 30-minute workshop format. (Appendix 14). On both occasions the audiences, (comprising people who identified with intellectual disability) affirmed the outcomes as broadly consistent with their own experiences. There was no feedback to suggest the results were erroneous.

The results were also presented twice to the Expert Group in May 2015 and May 2016. In May 2015 there were 8 members present, including three who had been interviewed as part of the research cohort. Their responses and feedback to each question were recorded and conformed broadly to the responses in the original 14 interviews (Appendix 16: Validation 1).

In May 2016, when the CEO requested I consult with the Expert Group, for purposes of developing the ‘Statement of Spirituality’, the same results were presented. Responses were again consistent with the original 14 interviews and the importance of friendship was strongly affirmed. (Appendix 18: Validation 2).

(ii) Independent Sources. The results were formally discussed with three senior members of the Office for the Public Advocate, including Victoria’s Public Advocate herself and 2 staff members with legal knowledge, one of whom had provided advice about consent being provided by an ‘agent’. The purpose of this meeting was to discuss optimal ways of developing the raw results into future policy statements regarding spirituality. These people are esteemed in the fields of disability law, guardianship and advocacy. The results also concurred with their anecdotal knowledge of families’ and

23 Swinton and Mowat, Practical Theology and Qualitative Research, 122-123.

186 individuals’ lived experience of loneliness and need for more social connectivity.

The results were also presented at a range of professional Conferences and symposia relevant to the topic, both nationally and internationally. These opportunities provided invaluable feedback and stimulation for me as I developed the thesis, as well as introductions to fellow researchers and additional literature. All presentations affirmed the importance of the thesis’ focus and particularly the importance of friendship to alleviate isolation and loneliness. Presentations:

• International Association for the Scientific Study of Intellectual and Developmental Disabilities, Melbourne, Australia, 9 – 13 August, 2016.

• ‘Exclusion and Embrace: Disability, Justice and Spirituality’, Melbourne, Australia, 16 – 18 August, 2016.

• ‘Living with Disability Research Centre’, LaTrobe University, Melbourne, Australia, 8 March 2017.

• ‘Summer Institute of Disability and Theology’, Los Angeles, USA, 5 – 8 June 2017.

• Presented research findings at University of Divinity Professional Development event for Clinical Pastoral Supervisors inducted as Adjunct Lecturers, 6 October 2017.

(ii) Auditability

Auditability refers to the documentation, or paper-trail, of the researcher’s thinking, decisions, and methods related to the study. It means that the decisions and actions taken can be clearly understood and followed by another researcher. Whilst another researcher may not agree with the processes and decisions taken, it is essential that

187 the rationale, decisions and experiences encountered at each stage of the research process can be followed through by another.24

Such an ‘audit trail’ commenced in the Methodology Chapter, where the chosen research methodologies and methods were described in detail. In the previous chapter IPA was outlined as the chosen method for analysis of the results. In the Research Design and Implementation chapter a detailed description was provided of all steps taken in engaging with VALID. VALID was the essential partner in supporting the research and providing access to promotion of the research amongst network members; staff assisted in the subsequent recruitment of the 14 interviewees. The milestones and dates for the research process were as follows:

• February 2013: Initial presentation at ‘Having Your Say’ Conference.

• March/April 2013: Initial presentations to four regional networks of VALID to raise awareness of spirituality.

• March 2014: Endorsement by CEO and Self-Advocacy Network to commence engagement with VALID.

• April 2014: Approval by the HREC of the Melbourne College of Divinity (MCD) to undertake the research. Participant Information Forms and Consent Forms approved.

• July/August 2014: VALID staff recruited 16 interested people – 14 confirmed.

• October 2014 – February 2015: Researcher undertook 14 interviews, and a Pilot Interview.

• February 2015: Commenced transcription of interviews and development of themes from interviews.

• March 2015: Dialogue with representatives of the Office of Public Advocate.

• May 2015: First Feedback session with the Expert Group of the Self-Advocacy Network;

24 Polit and Beck, Essentials of Nursing Research, 124.

188 • May 2016: Second Feedback session with the Expert Group.

• August 2016: Presentation of results including VALID’s provisional ‘Statement of Spirituality’ at the national conference, ‘Exclusion and Embrace: Disability, Justice and Spirituality’.

• August 2016: Endorsement by VALID of ‘Statement of Spirituality’.

• November 2016: Launch by the Faith Communities Council of Victoria (FCCV) of ‘Statement concerning People with Disability’ at annual Conference (Appendix 19). The significance of this Statement, also a research outcome, will be discussed in Chapter 10.

(iii) Fittingness

Fittingness or transferability of research findings refers to the study’s findings fitting outside that study. Fittingness also refers to the possibility that the findings would have meaning to another group or could be applied in another context.25 An attempt has been made earlier in this chapter to demonstrate fittingness by providing an accurate and rich description of research findings. By providing detailed information in the data analysis, future researchers can potentially apply this interview template and methodologies to other cohorts of people, whether they identify with intellectual disability or not.

6.11 Ethical considerations – adults with intellectual disability

Considerable thought was given to ethical considerations especially given the risks of potential harm for adults with intellectual disability. As noted, people with intellectual disability continue to be subject to stigma, isolation and abuse on account of vulnerability to coercive and domineering behaviour and social policy. Pranee Liamputtong refers to:

… people with disabilities as being amongst a number of social groups who are often hard to reach; they are the silent, the hidden, the deviant, the tabooed, the marginalised and hence invisible populations in society.

25 Michelle M. Byrne, “Evaluating the Findings of Qualitative Research,” AORN Journal 73, no. 3 (March 2001): 703-6.

189 The reasons for their invisibility are many and may include their marginality, lack of opportunity to voice their concerns, fear of their identity being disrespected, stigma attached to their social conditions, heavy responsibilities and scepticism about being involved in research.26

As Jacqueline Flaskerud and Betty Winslow point out, researchers also need to be very mindful of their responsibilities:

Research with vulnerable populations challenges us to consider once again ethical principles basic to research. Issues of providing informed consent, maintaining confidentiality and privacy, weighing the risks and benefits of a study, and paying attention to issues of fairness are all especially important when working with groups who are vulnerable.27

Given the self-advocacy ethos of VALID and my aim of developing a collaborative dialogue that would enhance possibilities for change, a research design was needed that valued individual self-determination with appropriate in-built protections. Within the literature, one of the primary concerns about risk concerning people with intellectual disability concerns whether free, informed choices about participating in research can be made. Reasons given about this capacity to consent include risks that coercion may be heightened because of communication barriers, lack of experience with decision-making, coercive social contexts and social isolation.28 Whilst considerable attention has been given to the capacity to consent, researchers are responsible for implementing safeguards for participants. Katherine McDonald et al note the divergence of views amongst researchers if a person is unable to make competent consent.29 Some contend they should be excluded whilst others suggest enlisting representatives – formal or informal – to assist with decision-making.30

26 Pranee Liamputtong, Researching the Vulnerable: A Guide to Sensitive Research Methods (Thousand Oaks, California: Sage Publications, 2007), 4. 27 Jacqueline Flaskerud and Betty Winslow, “Conceptualising Vulnerable Populations in Health- Related Research,” Nursing Research 47, no. 2 (1998): 74. 28 Margaret G. Stineman and David W. Musick, “Protection of Human Subjects with Disability: Guidelines for Research,” Archives of Physical Medicine and Rehabilitation, 82 (12 Suppl. 2) S9- S14, (December 2001). 29 Katherine E. McDonald “et al.” “Including Adults with Intellectual Disabilities in Research: Scientists’ Perceptions of Risks and Protections,” Journal of Policy and Practice in Intellectual Disabilities 6, no. 4 (December 2009): 244-245. 30 Arthur J. Dalton and Keith R. McVilly, “Ethics Guidelines for International Multicenter Research Involving People with Intellectual Disabilities,” Journal of Policy and Practice in Intellectual Disabilities, 1, no. 2 (2004): 57-70.

190 Concerns are also expressed about the use of proxy consent (which suggests relegation to a child role), the potential for proxies to make decisions based on their own wishes, and an undermining of the principle of self-determination.31

Legal advice was therefore sought from the Office of the Public Advocate (OPA) about consent being provided if a person was unable to sign for her/himself. Provision was made in the Consent Form (CF) for an ‘agent’ (trusted staff or family member over 18) to sign on the person’s behalf once they were convinced the person was fully aware of the research parameters and the questions being explored. Only two needed to use this option: one family and one staff signed on the interviewee’s behalf. To enhance understanding of the research aims and questions, all written material was simplified and depicted with pictures and symbols in an Easy English version.

People were informed that participation was entirely their choice. If they decided to withdraw for any reason, that would not prejudice their relationship with VALID nor any organization they were associated with. Confidentiality was assured and any references to particular people in conference publications or this thesis would be by use of pseudonyms. The research was considered extremely low-risk, however, if for any reason someone became upset they could contact a staff member of VALID, or in an extreme circumstance, the Lifeline telephone emergency service.32 I was not made aware of any such contact needing to be made with either staff or Lifeline.

For me as a relative ‘outsider’ the establishment of trust with VALID, its staff, and in turn, adults with intellectual disability and other relevant staff and family members was essential. That needed time to mature, which, given part-time Ph.D. studies over an extended period, enabled the successful gathering of information with the interviewees and the development and adoption by VALID of its ‘Statement of Spirituality’. Sensitivity to organisational and family constraints, including the follow-up and establishment of interview arrangements, was also required. I also provided a current Victorian Police Check to offset any concerns or perceptions which may have been

31 Keith R. McVilly and Arthur J. Dalton, “Commentary on Iacono (2006), “Ethical challenges and complexities of including people with intellectual disability as participants in research,”” Journal of Intellectual and Developmental Disability 31, no.3 (2006): 186-188. 32 Lifeline is a non-profit organization that provides free, 24-hour Telephone Crisis Support service in Australia.

191 heightened on account of extensive media coverage of both State and Federal Inquiries regarding Child Sexual Abuse.33 All study materials, including digital recordings, transcribed interviews and files containing contact information and signed consent forms, were kept in locked file drawers.

6.12 Two critical readership issues

Critical to this qualitative research is who the readership is most likely to be, particularly as it impacts different audiences. I conduct this action research as an ordained Christian minister and so bring to the analysis my values, history and faith from that tradition. Much of this has been declared already. The research participants would quite possibly hold different values, lived experience and understandings of Christianity from mine, or they may hold beliefs from other , or hold no religious beliefs at all. In the generation and creation of new knowledge, and interpretation of narratives, it was important that there be opportunities for people to respond to the findings and my interpretation of them. As noted above, this took the form of member checking from self-advocates, selected conference presentations and conversations with key policy personnel. This enhanced and deepened the knowledge generated whilst simultaneously developing strong collaborative researcher-researched relationships.

The second issue regarding readership relates to social action and change. Who is most likely to listen to the voices within this research and be moved to attend to any expressed hopes or recommendations? Would my interpretations of meaning and themes be ‘accurate’? Would I be true to what the interviewees have told me? How would I theologically interpret the new knowledge for faith communities and policy makers? These areas of concern prompt another question: should I be trying to massage the constructions at all, when they stand on their own as constructions of people’s narratives? I wondered if it would be dis-honoring of their lived experience to then try and harness it for other purposes. Denzin and Lincoln ease my mind on this

33 The Australian Government’s Royal Commission into Institutional Responses to Child Sexual Abuse commenced in January 2013. The final report was released in December 2017. Publicity surrounding this Commission was intense, and early release of information implicated clergy in situations dating back some decades. In Victoria the Parliamentary Inquiry into the Handling of Child Abuse by Religious and Other Organisations submitted its report to Parliament in November 2013.

192 matter when they write of the interpretation of one’s findings as being both an artistic and political act.34 This resonates with Holland and Henriot’s artistic root metaphor which underpins the research questions. Requiring political action, the vision lies in a renewed hope and imagination, calling for a new orientation, inspired by agape, for enhanced friendship opportunities for adults with intellectual disability and a society which places value on their spirituality.35

There is a rich history of applied qualitative research in the social sciences, and this is the critical juncture where theory, method, praxis, action, and policy all come together. The evaluator becomes the conduit through which voices can be heard. I take their comments to imply that provided there is clarity with all participants about process and intentions, the practice and application of qualitative research is both flexible and far- reaching.

6.13 Conclusion

This chapter has provided details of the processes of design and implementation of the research project, including discussion of ethical considerations. Development and maintenance of trust with VALID Inc. was critical to the gathering of information and knowledge, and ultimately the success of the venture. ‘Success’ is an elusive element to measure. Arguably when undertaking social action the process is as important as the outcome, or certainly complements it in terms of engagement with people and building alliances to enact change.

However it can be claimed that in being the first such PAR in Australia, combining this cohort and phenomenon, within a non-faith based self-advocacy organization, significant knowledge has been gathered. This in turn has generated an organizational policy statement about the importance of spirituality in the lives of adults with intellectual disability. This is significant given the deep vein of suspicion and reticence within the Australian psyche to embrace matters of the spirit.

In my role of bridge-builder, VALID’s Statement became the means to convince the FCCV of the need to develop a similar organizational policy position, which it has done

34 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 23. 35 Holland and Henriot, Social Analysis: Linking Faith and Justice, xvi-xxi.

193 so as part of this social action research (Section 6.10 (ii)). The application of both these Statements will be discussed in Chapters 9 and 10.

194 Chapter 7: What did the people say? Emergent research themes

7.1 Introduction

This chapter details the content of the 14 interviews. What did participants say in response to the 10 questions? Discussion of data analysis will include quantitative information relating to time spent on each question. This indicated the relative importance people ascribed to certain topics and supplemented IPA, the method used for deep immersion in the material and subsequent development of themes. Selected responses illustrate the 22 emergent themes which built into the two superordinate themes defining the interviewee’s understanding of spirituality, their connectedness with others and with God.

Following Whitehead and Whitehead’s overarching theological reflection model, this chapter focuses on the pole of Experience, the personal accounts of the people who are the primary focus of the research. Of the three methods within their model, attending in this chapter is exemplified by attentive listening during the interviews and deep listening in subsequent analysis.

7.2 Preliminary immersion in the data – two actions

Deep immersion in the data analysis, prior to developing themes using IPA, required two actions. Firstly, using a ‘butcher’s paper’ approach, I surveyed the 14 individual responses for each question, discerning groupings of comments within each question and listing the frequency of those responses.1 Secondly, I tabulated time spent on each question to provide an indicative weighting of topics considered important.

7.2.1 First action: Butcher’s paper approach

This entailed multiple readings of transcripts with a list of key comments and meaning noted for each question. From this raw list of responses to the 14 questions, groupings of similar comments and meaning were noted along with frequency of comments for each grouping. An example from question 4:

1 Large sheets of paper were used to record significant comments from the transcripts.

195 Q4: “Are friends important to you? And if so, why?” (RELATIONSHIPS)

Answered in the affirmative (10/14)

Made friends via Church links (6/14)

Talk of problematic romances (5/14)

“And if so, why?”

Get to do things together (8/14)

Learn from each other (2/14)

Makes me feel good (2/14)

Like to have more friends (3/14)

Makes me feel safe (1/14)

They respect me (1/14)

This initial immersion was invaluable in recalling each person’s verbal and non-verbal comments. Each question became more focussed in my mind as I contemplated responses. This also developed connections between questions and individuals. The grouping of comments and meaning aided the filtering and organisation of information and was also a precursor to IPA’s development of themes.

7.2.2 Second action: Tabulation of time

Two tables were drawn up representing (i) the aggregate of time spent by each person on each question (Table 2) and (ii) a summary of time spent on each question as a percentage of the total (Table 3).

196

Table 2: Aggregate of time spent per question

(Note: figures refer to min/sec NOT decimal). Percentage figures relate to all 10 Questions except for Introductions (13.05 minutes) spent as people prepared for the interview.

Table 3: Percentage of time spent per question

197 In summary, Questions 1 (16%), 6 (10%) and 9 (6%) represented a total of 32% of time spent responding to the overt questions about spirituality, religion and God. The topic of friendship, Question 4, was significant at 13% with other topics in descending amounts of time. All questions, except 8 (8%) and 9 (6%), 14% in total, prompted feedback that related to personal connectedness and relationships with family, friends, faith communities, shared activities and/or God. Thus 86% of all responses and conversation were related to personal connectedness and relationships.

This quantitative information provided an important, although indicative measure only, of the significance people place on each of the questions explored, indicative because of the following constraints:

• an agreed time (40 minutes) within which the same set of questions were explored;

• variable understandings by the interviewees of the question posed;

• potential researcher bias in exploration of the topic of friendship.

These two preliminary immersions in the data were extremely helpful in ‘mapping’ and organizing responses and provided an initial sense of the entire data set.

7.3 Theme development

Smith and Osborne’s process of IPA assumes that:

… the analyst is interested in learning something about the respondent’s psychological world … meaning is central … those meanings are not transparently available – they must be obtained through a sustained engagement with the text and a process of interpretation.2

This entailed the following step-by-step pathway which ultimately identified four major themes for the 14 interviews, which in turn led to two superordinate themes.

Consistent with the IPA method, the steps were as follows:

2 Smith and Osborne, “Interpretative Phenomenological Analysis,” 66.

198 • Using a free textual analysis approach, each transcript was read several times. Left-hand margin notes indicated what was significant or interesting: similarities, echoes, amplifications and contradictions were sought.

• Returning to the beginning of the transcript, the right-hand margin documented emerging theme titles, based on comments made by the interviewee. At the end of each transcript an initial list of significant comments for each question was compiled. This enabled easy referencing to comments attributed to a person, and to the time when the comment was made.

• These comments were ordered to discern connections within each question and to identify emerging themes. A highly iterative process, this involved close interaction with primary source material. There was constant checking of my interpretation of what the person said. Question by question, a listing of all significant comments developed themes for each question as noted below.

Q1: “When I say the word spirituality, what comes into your mind?”

1.1 Corporate connectedness

1.2 Personal piety and faith

Q2: “What makes you feel good about yourself?” (value)

2.1 Participation in household and Centre activities/outings

2.2 Being connected with family and ‘special other’

2.3 Doing things for other people

2.4 Personal relationship with God

Q3: “What do you like best about your life?” (meaning)

3.1 Participation in household and Centre activities/outings

3.2 Helping others

3.3 Self-acceptance

199 Q4: “Are friends important to you?” “And if so, why?” (connectedness)

There was unanimous affirmation of friendship’s importance; some enthusiastically so, whilst others were more constrained when recalling a problematic personal relationship. Thematically, friendship’s importance was revealed in the following:

4.1 Doing a range of activities together

4.2 Descriptions of friendship characteristics and features

Q5: “What do you want to do with your life?” (hope)

5.1 Have more friends and family connections

5.2 Individual aspirations to fulfil dreams and self-expression

Q6: “Do you think there is a God?” (transcendence)

12 people answered in the affirmative, whilst 2 were ambivalent. The responses gave rise to:

6.1 Positive associations with Church – prayer, rituals and stories

6.2 Attributes of God

Q7: “Why do you think you are in the world?” (existential)

7.1 Being connected with other people

7.2 Self-determination and contentment

Q8: “Do you like being in nature?” (nature)

8.1 Positive associations for most people

Q9: “Is there anything else about spirituality, religion or faith you would like to mention?”

9.1 Sadness and grief/loss

200 Q10: “Is there anything in your life you would like to be different? Any changes for a better life?”

10.1 Happy with life as it is

10.2 More connections with family/others of like-mind

10.3 Being independent is important

Thematic development over 3 stages is illustrated below in Table 3. The 22 themes (Stage 1) were analysed to discern similarities of response and meaning. From that analysis, and further detailed in 7.4.2, four categories developed (Stage 2):

• Friendship issues

• Relationship issues

• Spiritual/religious participation

• Intrapsychic/existential which in turn led to two superordinate themes (Stage 3):

(i) Connectedness with others

(ii) Connectedness with God/deity and self.

201 Stage 1 Corporate connectedness Personal piety and faith Participation in household and Centre activities/outings Being connected with family and ‘special other’ Doing things for other people Personal relationship with God Participation in household and Centre activities/outings Helping others Self-acceptance Doing a range of activities together Descriptions of friendship characteristics and features Have more friends and family connections Individual aspirations to fulfil dreams and self-expression Positive associations with Church – prayer, rituals and stories Attributes of God Being connected with other people Self-care and happiness/appreciation Positive associations for most people Sadness and grief/loss Happy with life as it is More connections with family/others of like-mind Being independent is important

Stage 2 Friendship issues Relationship issues Spiritual/religious participation Intrapsychic/existential

Superordinate Themes Connectedness with others Connectedness with God/deity and self

Table 4: Thematic Development in 3 stages

202 7.4 What did the interviewees say?

To develop understanding of transcribed data each question will be illustrated with commentary and direct quotations relevant to emergent themes (in dialogue boxes).3

7.4.1 Development of themes from each question

7.4.1.1 When I say the word spirituality, what do you think of, what comes to mind?

Theme 1.1: Corporate connectedness

Theme 1.2: Personal expressions of piety and faith

Some responses to this question:

“Spirit … it means … hear us … help us.” (George) “In my mind I think of God in a nice way and me think of God when people pass away.” (Igor) “Faith walk.” (Cameron) “Meditation and at the Church.” (Jason) “We all have a mind, body and spiritual side to us – it’s to do with being connected with God.” (Bill) “Gives you happiness.” (Peter) “To talk with God for instance. Talking about God and things like that.” (Mary) “I think of God and I believe that God does the right thing by all.” (Stephanie)

For some the word ‘spirituality’ did not evoke an immediate response and required the use of words such as ‘faith’ or ‘religion’ as possible links to concepts grounded in or relevant to the person’s own experience, and which still related closely to ‘spirituality’. Louise said she did not know what the word faith meant although when that was

3 Quotations attributed to interviewees are expressed in BOLD to highlight and give respect to voices and opinions often ignored or overlooked. It is also consistent with PAR principles.

203 explored she spoke of attending Mass where the priest broke up the bread and gave it to everyone.

Overwhelmingly, when references to attending a worship service were made, they were Christian in nature, and done so in the company of family or friends. Some people currently attended worship, whilst others spoke of attending as younger people with their family of origin. For those who did attend, it was a positive association, in some instances significant because it was an outing with loved ones.

Examples included Paul describing his Confirmation ceremony at which the Archbishop was present, George and Louise respectively attending with friends and family, and Bill’s strong sense that as part of his church’s music team he was contributing to the worshipping life of the community:

“Going to Church is one of my highlights.” (Paul)

“… sometimes when I go to a Church service … with some friends of mine … go to Church and play some music and we talked to God and he heard us.” (George)

“I like going there with my own Mum.” (Louise)

“It’s enough to feel like family which is good … in other churches people with a disability would not be given that sort of opportunity. Or in fact they could end up being discriminated against.” (Bill)

A range of individual responses were also recorded in response to the understanding and meaning of spirituality. Three people referred to deceased relatives, two cited below, with evident sadness tinged by a note of transcendence.

204 “I get woken up in the night because my mother and father are speaking to me in the night … above my person. I think Mum’s memory’s in the sky and never left.” (Rachel)

“Me think of God when people pass away.” (Igor)

Other responses centred on godly attributes and a personal sense of relationship with the Divine, and highlighted the importance of communication and prayer in both good and bad times.

“If I have questions to ask or not. You have got a private (sic) it’s like having a private conversation.” (Cameron) “It means God can hear me and sometimes if I have trouble I can speak to God and he helps me.” (George)

“Yep – pray a lot. Become a Christian.” (Peter)

“I believe that God does the right thing by all. He can do the right thing … by us. I believe that God is a human being. And I believe that God is a male not a female.” (Stephanie)

“It is about Jesus. He died on the cross and came back to life again.” (Simon)

In a wide-ranging conversation with Bill, who is integrally connected to his faith community, the importance of prayer and a personal relationship with God emerged. For Bill, prayer, in the context of accessible godly connection, is important.

“I couldn’t fit that … at least this way, it’s not religion as such, it’s relationships – he’s your friend. God’s your friend … you can talk to Him any time you want. Which is good then you sort of … like you can talk to a person who you can see.” (Bill)

205 7.4.1.2 What makes you feel good about yourself? (value)

Theme 2.1: Participation in household and Centre activities/outings

Theme 2.2: Being connected with family and ‘special other’

Theme 2.3: Doing things for others

Theme 2.4: Personal relationship with God

All people except one mentioned the importance of participating in the activities of their residence or the Centre they attend each day, including with fellow residents or attendees as well as staff. Going on outings and sharing in activities provided significant levels of pleasure and personal satisfaction. Being in an encouraging context that promoted independence, with supports when needed, was an important ingredient of feeling good:

“I organise my own lunches. I want to be independent and outings make me feel good.” (Louise).

“I do a lot of work here. Cleaning. Dishwasher … and every Friday … Friday night I do cooking. And I love doing the garden.” (Julie).

“Playing ten-pin bowling. Inside of me makes me feel active makes me feel fun and makes me feel like doing something make me feel like doing something for a long period of time yope.” (Igor)

“I feel very happy when I am going to a music theatre because I enjoy it because (sic) it is an inclusive theatre group. I have a passion to be a singer on stage and travel around the world for my career.” (Stephanie)

206 “Well I like to go places. Like getting out and about. Like to go to Knox City and sometimes to Mooroolbark shops. And I have a lemon slice and latte with Nancy and Rachel.” (Mary)

“I love going out with others. Like today I have a carer coming and we are going to see her sister.” (Paul)

Feeling good about oneself was also expressed through connectivity with family, as well as a desire to have a ‘special’ other person and aspirations for intimacy.

“Being with my family. I’ve got 4 brothers, 4 sisters. Sometimes one of my sisters rings up and comes to visit me. She comes and visits me, like when I’m down.” (Mary)

“Sleeping over at my Mumsy’s every fortnight I come back from Mumsy’s that keeps me active yope.” (Igor)

“My dream is to get myself a new girlfriend and that’s my dream and that’s my aim.” (Igor)

“… well maybe one day … God help me getting a new girlfriend, and teaching her how to talk to God …” (George)

Altruism was an important theme, including voluntary service such as delivering meals to elderly people in their homes and performing tasks in a local Opportunity Shop.

“I do Meals-on-Wheels. I’m doing that tonight. I feed the old people. I love doing that. Help the old people.” (Julie).

“I help them. Ironing … in the Op Shop. Very nice people … very nice ladies. Makes me feel good.” (Louise)

207 Feeling good about oneself included references to religious faith and the part it plays in their lives, including opportunities to share faith.

“I can talk to them and encourage them to speak to God and I help people … I help many people who don’t know.” (George)

“I started to … to walking closer to Jesus I mean like there’s everything (sic) seems a lot, lot, lot brighter. I went to Church one time and like … like the … just everything clicked.” (Cameron)

“Having God as part of my life is one good start” and added “and also the one that gets me out of trouble at times.” (Bill)

7.4.1.3 What do you like best about your life? (meaning)

Theme 3.1: Participation in household and Centre activities/outings

Theme 3.2: Helping others

Theme 3.3: Self-acceptance

Many people reiterated details of outings and activities with family and associates, and that these events provided structure, purpose and contentment in their lives. Altruism was mentioned again as was stability provided by medication which enables Bill to care for others, particularly his new girlfriend.4

4 The City Circle Tram circles the Melbourne CBD. It is an historic W-class tram no longer used for commuting purposes.

208 “Staff taking us in to the City Circle tram.” (Simon)

“Makes me feel happy because I am helping people out.” (Mary)

“But knowing there is someone there to look after, do things for, that’s pretty meaningful. What’s the point of doing stuff yourself? Well you can do some stuff … it’s got to be more than yourself.” (Bill)

A significant theme that emerged in response to this question was people’s self- acceptance and general contentment with their life. This was reflected in Jason being unequivocal about the label ascribed to him, and Cameron’s conversion to Christianity.

“Having Asperger’s.” (Jason)

“There is more detail in the stuff I see now. Like before you only see stuff in lines. Now everything is in bigger colour. It’s a beautiful place to be. Like life used to be about negatives once upon a time.” (Cameron)

“Able just to be me I guess. Can’t be anybody else. What you get you get … do what you can.” (Bill)

7.4.1.4 Are friends important to you and why? (relationships)

Theme 4.1: Doing a range of activities together

Theme 4.2: Descriptions of friendship characteristics and features

Without exception people answered in the affirmative. The responses ranged from enthusiastic and absolute, to constrained, due to difficulties experienced with some friendships.

209 “Well that makes life just that little extra worthwhile. Otherwise without friends, that’s not living it’s mere existence. And not a very nice one. I’ve been there too ….” (Bill)

“Yes they are important to me. I like my friends very much.” (Stephanie)

“Like Tomic is important because he does great things. My friend. I go to Tomic’s house. Last Tuesday his Mum made chocolate apple cheesecake.” (Paul)

“Important to me to have a good friend. Tim gets in contact with (sic) I like get in contact with my staff for dinner and when on my holiday break. And he’s a lovely bloke too he’s a nice friend I have.” (Igor)

Less fulsome responses about friendship came from four people who spoke about problematic relationships, particularly concerning a ‘special’ other person.

“Um I got a very important lady friend here but we (sic) not supposed to talk about that sort of stuff. If we can’t have full friendship so long as we can still be friends. Always care for her first.” (Cameron)

“He’s just a friend now and a friend to a friend … I bought him a cuppacino at the break-up party at VALID … advocacy … and after it didn’t work out I couldn’t have anybody.” (Rachel)

Two people spoke of staff as friends. One person had developed a very strong connection with a staff member at her house, and since the staff member’s retirement, they continued to go on outings together.

210 Why are friends important?

Responses to this question fell broadly into two categories: (i) the feeling about friends, in both one-to-one and group contexts, and (ii) attributes of friendships which were appreciated.

(i) Feelings about friends

Specific references to friends were made in various contexts: the Day Centre attended (5), work (1), residential home (5) and church attendance (3).

“The reason Amber is important to me is we used to be on the Client Council and we would go to Knox City and go shopping. Makes me feel good.” (Mary)

“Happy. Friends make me feel safe and happy inside.” (Julie)

“Feels like sticking together like makes me feel settled makes me feel like something in my system and makes me feel like hey Iggy wants to do this or Iggy wants to do that or Iggy want to do such and such that’s how people getting along to me … ” (Igor)

(ii) Attributes of friendship

People spoke in some detail about the attributes and benefits of friendship. For Jason: “Friends teach me a lot of things and give me good advice”, whilst for Paul, when he visits his friend Tomic he experiences a sense of being respected and welcomed by Tomic’s mother. Julie, in mentioning that friends made her feel safe and happy inside also added: “And stand up for myself” which she said was important and made her: “Feel great.”

Some spoke of how friends care for each other and stick together in good and bad times, including the importance of listening and being kind.

211 “Well … well … if my friends need help … we are there to help each other … and … to help other friends as well … having friends who will go the extra mile for you … or regardless of what is happening will stick by you.” (Bill)

“You look out for each other … what you are up to … what you are doing … every each day you got to help each other … you can do, you don’t know, you know … . … that kind of kindness … got to try our hardest with them … you want … different people … learn something … that kind of question … got to listen to your friends … that sort of questions you don’t want … got to listen.” (Peter)

Bill spoke about having 2-3 good friends in his life who are not always physically present, but the knowledge of them being close friends provided mutual comfort: “Maybe don’t see them all the time but they know I’m always there.” Bill also spoke most appreciatively of the enduring nature of friends in looking out for each other. When he moved interstate to where he now resides, a family friend of 30 years introduced him to the Church community in Geelong where he is now involved.

When talking about the importance of friends, two people said they would like more friends:

“I want more friends and more friends getting along with me.” (Igor)

“… so I want to feel like I am more happier … maybe make some new friends in Church.” (Mary)

7.4.1.5 What do you want to do with your life? (hope)

Theme 5.1: Have more friends and family connections

Theme 5.2: Individual aspirations to fulfil dreams and self-expression

Initially some seemed uncertain how to respond to this question. For these interviewees, the question was rephrased to explore what future goals or dreams they

212 had for their lives. Responses ranged from the mercurial to the mundane. Predominantly the answers outlined specific activities to be done in the company of family, friends and associates, whilst references were also made to ‘special friends’.

“Flying on a plane to Adelaide, and also my boyfriend wants to come on that.” (Louise)

“I like going out on the bus. We’re going out. Like a holiday.” (Boris)

“I miss my family for a long time and I miss them for period of time … that’s my dream to be one day a movie star. Inducted in the Hall of Fame and Hall of Sport and be inducted for the best athlete in the world that’s my dream.” (Igor)

“My dream is to be a singer up on the … stage and I would like to travel around the world with my music.” (Stephanie)

“… in the future … have a girlfriend … and get to know her and we can

Two… people we can were have quite … content talk to withGod their about lives, being with … one yes hoping … and to behave a great a happy aunt: times being together.” (George)

“I’m happy doing my cooking and making my cake mixes. I’m happy living in the house…happy to be older and just left … be a great-aunty one day.”

(Rachel) “Well just being here I guess. I think I am doing everything I want to do at the moment. Being connected to the right supports, the right service.” (Bill)

When asked what he wanted to do with his life, Jason said: “Meet politicians. I like meeting politicians. I met Rupert Hamer in 1984, Jeff Kennett in 1988.”5 Interestingly this question also evoked a similar response from Cameron who in fact wanted to: “I mean … like … to become a parliamentarian.” The reason given for

5 Sir Rupert Hamer and Jeff Kennett were Premiers in the State of Victoria, Australia.

213 such an aspiration was so that he could expand the size of the Day Centre he attended.

The question evoked a reflective conversation with one person who spoke of now being an adult and having to take responsibility for his actions in a world that was at times hostile towards him. He hoped for a kinder world in which he, and by extension, other people with disabilities, would be treated better. “It hurts me … when you get sweared at … f’d at … you know – it’s out there outside the building not in here it’s not everywhere you just have to keep your opinions to yourself … you know … just got to have that sort of … like, the meaning … what some people can do … you get bullied at … yeah, want to be treated better” (Peter).

7.4.1.6 Do you think there is a God? (transcendence)

Theme 6.1: Positive associations with Church – prayer, rituals and stories

Theme 6.2: Attributes of God

All except two answered in the affirmative. One said: “Who is God … what is God?” (Rachel) whilst the second responded: “I don’t actually know because I haven’t heard much about God yet.” (Mary)

Certainty was reflected in the conversations with the other 12 respondents, who provided a range of experiences and insights. Their answers could be categorised as either (i) involvements with faith communities, or (ii) insights and understandings of God’s nature and attributes. These categories were not mutually exclusive.

(i) Involvement with faith communities

As noted above, all involvements were with Christian communities. Five interviewees had a current connection with a church, and each spoke positively about that. Another four referred to previous connections with a church that evoked positive associations.

Of the five currently connected Cameron spoke of attending church from an early age and that he continues to do so with his family. He described Trinitarian relationships and knowledge of Jesus as a storyteller. “Feeding the 5000. When the bread was divided and the fish was spread around. Multiplying.” Louise associated God with: “Up there yes it is. That’s where my aunty is. And I feel a bit sad for that.” Louise

214 attends Church on a regular monthly basis with her mother. She prays for her aunt and other people as well. Louise showed me the Certificate of her first Holy Communion in 1979. As to how communion makes her feel: “Love the taste and the wafer melts with the wine.”

Simon associated God with being in heaven and was familiar with elements of the Christian story from earlier in his life and current reading of the Bible (Mary and Joseph; Jesus on the cross): “He’s in heaven. With Mary and Joseph … I watched a program at 11.30 on Songs of Praise. People singing hymns.” Asked about how he felt about hymns he replied: “Really nice. Sing a lot of nice hymns. Makes me feel happy.”

“God is kind. To me. I love going to Church it’s my favourite thing to do and the priest he always comes up and has a chat with me and goes. That’s why. He loves me so much.” (Paul)

“The God, yeah there is a God. In Church. Very good yeah He’s very good.” (Boris)

“Sometimes me always think of God in a nice manner and every time me think of Him always think of how’s my family going and how’s my family been in the past family of good memories always think of God in a nice way.” (Igor)

Other comments about faith communities included clear, relational and affirming connections.

(ii) Attributes and nature of God

The topic of prayer and of God being there to listen, act and support was noted. Stephanie, who is visually impaired, attends Church with her family and in relation to believing there is a God, and how that affects her life said: “I sometimes um, um, I pray in Church. But I don’t really know, because I can’t see I don’t actually know what God is … it’s a bit hard to say.”

215 In this part of the conversation with Julie who was hesitant and quietly spoken, I introduced the question about what was in her heart: “Is God in your heart?” She said that she is a person who likes to pray and replied: “I don’t get upset because I’m happy.” For Jason “I started to believe in God in 1983 because of climate change.” The practice of meditation is important because: “Meditation. I think of my friends.” (Jason) When thinking of God in different contexts: “Me always pray with my family and me always pray in a nice manner. Me always pray with my house too. And in a nice way.” (Igor)

Again, God was mentioned as being ‘up there’ or ‘in heaven’ and this was also associated with loss and grief on account of a loved one who is also now ‘up there’.

“Up there yes it is. That’s where my aunty is. And I feel a bit sad for that.” (Louise)

“God is out there – up in heaven” … gives you guidance … every single day … you get a lot of guidances … you know … what the guidances do for you … can’t get your own guidances … what can it mean … every each day, you know.” (Peter)

In making sense of the meaning of God, two separate explanations were offered to explain and justify God’s existence. In responding to why there is a God, Cameron pointed to the solar system and how God has organised our place in it, whilst Bill’s certainty about God’s existence was particularly effusive:

“… like where the world is in the solar … solar system.” (Cameron)

“I think we are all evidence of that kind of proof too. Because if it was the other way, the evolution side of it … it’s not logical because how could something so complex just appear? It had to be put together. The human body is one example of it … it’s just so complex and well designed. I do know He’s very loving (sic) very well justice and He doesn’t like people doing the wrong things.” (Bill)

216 Recounting biblical stories about Jesus’ supernatural powers offered further proof to Bill of God’s power and love: “Water becoming wine – that’s bit of a head scratcher! Miracle of some description. Feeding the 5000 with 5 loaves and 2 tiny little fish. That would make no sense to most. But it happened. Telling storms to go away – or calming them.” In response to my question: “Is Jesus important to you?” “Of course. He did stuff that for us that no human being I know would do … being nailed to a cross when he had done nothing wrong. But he did it out of love … well I know it is out of love. I guess there was no other way to do it. That’s just showing it to the absolute extreme.”

7.4.1.7 Why do you think you are in the world? (existentialism)

Theme 7.1: Being connected with other people

Theme 7.2: Self-determination and contentment

This question was problematic for some. Two people outright indicated that they did not know: “I don’t know. Worries on your life …” (Boris) and approximately half of the interviewees initially provided answers that were related to everyday domestic activities: “Because I don’t know. Staying in bed” (Paul) and Julie said: “Yesterday I went to the doctor and had a urine test.”

Three responses immediately connected the question with their physical birth or daily needs.

“Because I was born in Mum’s … I probably should not say this word … I was born in to this world … and I love the world we live in … they saved me at birth … I’m alive … what I look like what I do what I’m not whatever … at least I’m alive even though I have a disability … I didn’t die … I’d rather have the oxygen mask and they held the baby.” (Stephanie)

“God made me be born with Aspergers.” (Jason)

“Why I am alive is because I am eating healthy.” (Louise)

217 With reflective listening and open-ended questions, two broad areas of response emerged. People spoke about connections with others, including God, in two distinct ways regarding purpose in their lives: (i) connectivity with family, friends and God and (ii) self-determination and contentment.

(i) Connectivity with family, friends and God

For Igor visiting his cousin’s new restaurant was important, whilst for George there was a particular salvific purpose.

“… me always go there for dinners and lunch and sometimes particular time.” a dessert too … and connect with a lot of people I know too.” (Igor)

“We’re obviously here to connect with/reach certain people and do certain things that only we can at that particular time … and even the next day I’ve taken them to Church and actually gotten saved.” (Bill)

“… one thing I was here … to be … in a good family and friends and … to help people who don’t know … and to help them reach out and to talk to God.” (George)

“look after yourself properly … got to help people.” (Peter)

“I know I’m not by myself. Part of the world … like we are all part of it.” (Cameron)

(ii) Self-determination and contentment

Included in this existential response were some explicit responses about life purpose and definite vocational tones.

218 “God puts us here for obvious reasons… … I’m like I know where you (sic) you’ve got to go.” (Bill)

“I like this place. I like the staff and the clients…everything. Pretty good.” (Robert)

“God said to me … well George … I want you to help people … and … to help people and … the people will come to you and … that’s what I believe.” (George)

“Because I think I’m happy. I think I’m assertive. I think I am pretty … I think I have lovely blue eyes. I am on the earth because I am a person … who’s happy … not sad …” (Mary)

Paul did not immediately respond. With a prompt from his mother: “Why do you think you are here?” he said of his sister: “Respecting Emily. I love Emily because she does great things.” When asked what was good about Asperger’s Jason replied: “Very clever. Think about the next world and when it ends. Also clever at dates and religion … what’s going to happen in the next world, but I don’t actually know what’s going to happen. Have to wait and find out!” Other responses expressed autonomy and agency in responsible terms:

“Look after myself.” (Simon)

“Own private life to you (sic) … go your own way … have a real good life with you … you know every each day … look after yourself properly … living my life. Cos I’m a young man. Got to learn something every and each day (sic) … you know … some people they can’t.” (Peter)

Cameron spoke of a universal quest: “I’m here for the same reason all of us are. I mean like we have come here to … seek … that someone we should have found a long time ago.” I replied: “So it’s to do with seeking someone we should have found a long time ago?” His response was: “Yes. God.”

219 7.4.1.8 Do you like being in nature?

Theme 8.1: Positive associations with the natural realm.

Initially three people were not familiar with the term ‘nature’ but with the use of key words ‘outdoors’, ‘parks’ or ‘trees’, an understanding was expressed. The majority expressed enjoyment and pleasure when participating in settings that were associated with the natural realm; five were effusive about multiple benefits to health and well- being.

“Love nature – all started off in the Garden of Eden didn’t we? I like the outdoors. I like … the air’s a lot freer … you notice the flowers, the pollination, the trees … the sky.” (Cameron)

“Yeah I been outside. Fresh air. Yeah we do gardening every Thursday we do … do gardening. Parsley.” (Julie)

“Andy well mate … nature … has a way …. Of … helping people being with people outside … and discover … gardens … and the parks … and to give people a good time being outside.” (George)

“Nature makes you feel younger.” (Jason)

“…. really care about your own self.” (Peter)

During each semi-structured conversation I asked respondents how being in nature made them feel. Three responses, including corporate pleasure, indicated strong awareness of benefit and appreciation:

220 “I like the autumn trees the way they change colour and flowers make me feel happy … and good to be with nature … it is Andy … knowing that nature is around … to give us good space to be in parks …” (George)

“Yes I do. Because I am with my friends … and I’m happy …assertive and I like to do things with my friends … that’s all the things I can think of.” (Mary)

“ … and the nice fresh air during the day and nice having a drive and catching up with staff members and catch up with my friends I know have a good chat and conversations yope.” (Igor)

One person expressed fear when talking about wind and rain: “I don’t mind getting wet but not when it’s really windy or really windy because I find it really scary sometimes.” (Stephanie)

As to how the created order came into being or a sense of transcendence, only Cameron (Garden of Eden reference above) and Bill were explicit. During the conversation with Cameron the question was asked: “And do you feel any closer to God when in nature?” to which he replied in the affirmative. Bill in furthering his expressed love of nature and how amazing it is said: “Just like everything we have out there … some of it I don’t understand … like I don’t get … not so much animals, but why insects exist, especially when to us they seem useless … why do bedbugs exist … tics … there’s a whole range of things like that … why do they exist … but then in a lot of aspects of nature you can tell it hasn’t just happened ... it’s obviously created … it’s incredible.”

7.4.1.9 As we are nearly finished, is there anything else you would like to say about your spirituality?

Theme 9.1: Sadness and grief/loss

Most of the 14 interviewees said they had nothing to add. Of those who did, two remarked on incidents of significant loss and grief in their life, and the care they

221 received at that time: “… when I was a young man I had a girlfriend and we went together for many years … and she left … and then … a couple of weeks later I heard she passed away … and then my life … it took a bad turn … and I spoke to God and He told me it was too late to help her.” (George). Louise spoke about the death of an Aunt and that she gets emotional when thinking about her. She receives care and support from friends and family, but said that God was: “not helping me a lot.”

Julie spoke of her birthday parties with friends at the ages of 21 and 30 and added: “I’ve got a friendship ring from my boyfriend.”

Two people made references to their identity and label of disability:

Jason spoke of his sexuality as alternating between bi-sexuality and homosexuality since 1976, and how important that part of his life is. He also recounted details of his disabilities: “I had schizophrenia in 1983. I’ve got Asperger’s, and I have one more … intellectual disability.”

Bill also spoke of the disability labels he lives with: “… that falls under intellectual and autistic … and dyslexic … also used to be epileptic.” Based on his positive experience of being part of a faith community, and mindful that that cannot be taken for granted, Bill added a realistic positive and negative assessment:

“Well I think we all need to belong somewhere … and that also includes any folk with any sort of disability … there are some churches around that are very welcoming … of such folk and will accept them … and give them opportunities to do things, but they are very few and far between … and there are those which outright discriminate … like some of your bigger style churches that have to have everything perfect, I don’t think that’s OK. And it’s something that needs to be dealt with in some way, shape or form.”

222 7.4.1.10 Are there any changes or actions which would make your life better?

Theme 10.1: Happy with life as it is

Theme 10.2: Connections with family/others of like-mind

Theme 10.3: Being independent is important

Given the interviewees were part of a self-advocacy network, it was important to conclude with this question in case people had suggestions or insights which might improve their lives or those of others. Seven of the interviewees expressed contentment with their lives as they are, with no real desire for change. “Why change it if it’s not broken? I’m happy.” (Cameron) “I think things are better for me” (Louise) in relation to having moved into a new home. “Going to Church. It’s fun!” (Paul)

Two people wished to enhance their independence by improving skills in using transport and connected with work and family, whilst a third wanted more faith connections.

“I like to learn transport buses (sic). Go to work and back. I can’t do it by myself.” (Julie)

“… to teach me how to drive one day, then one day in my dream … to be independent when I go to and come back from my family …” (Igor)

“… want to be with another group … who knows about God.” (George)

Bill was quite specific as he noted changes that needed to be made to advocacy for enhanced participation in faith communities:

“I think a few of these organisations can do more to advocate in this area, to make sure that people with a disability get that side of that particular aspect gets looked after a bit more (sic) … because at the moment there is very little … and it could be a lot better.”

223 7.4.2 Superordinate themes and discussion

Analysis revealed that the majority of the 22 themes related to connectedness and its importance in providing value and meaning with family, friends and God. This was evidenced in activities shared with others, service and care of others, and a desire to have more friends. Some recounted the importance of their personal relationship with God and participation in a faith community, either currently or in the past. Another cluster of responses concerned matters of loss and grief, individual aspirations and independence. These themes (22) across the 10 questions, when analysed using IPA to discern similarities of response and meaning, were then categorised with a resultant four dominant themes:

• Friendship issues

• Relationship issues

• Spiritual/religious participation

• Intrapsychic/existential which in turn led to two superordinate themes:

(i) Connectedness with others

(ii) Connectedness with God/deity and self.

These two superordinate themes define the discussion of people’s understanding of spirituality. Chapters 8 and 9 will particularly focus on connectedness with others and with God as it relates to the topic of friendship. The 14 participants spoke of a spirituality defined by relationships and connectedness, clearly relevant to the first research question:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

Drawing from the detailed discussion in Chapter 3 of spirituality, friendship and intellectual disability I contend that Christian faith communities are places which can offer a distinctive place of welcome. Chapter 9 develops the theological understanding and imperative of a response, a new orientation, using Brueggemann’s schema.

224 Friendship will be established as the pinnacle of relationship and bring a questioning focus on how faith communities can respond through friendship with people with intellectual disability. It is contended that friendship is the ‘pearl of great price’, the new orientation by which faith communities can increasingly become places of hospitality and sanctuary for people who have historically lived in an exilic state bound by stigma, exclusion and indifference. It is also contended that through friendship, faith communities will rediscover a renewed sense of friendship with God, and a revitalised understanding of and appreciation for God’s redemptive actions in the world. Friendship enables the move from exclusion to embrace to increasingly become a reality.

Chapter 10, drawing on the foundational dialogue and understandings of spirituality and disability, will address the second research question:

(ii) How can the disability services sector respond? What action is needed?

Chapter 10 describes how interview outcomes underpinned the development of two formal policy statements that highlight the importance of spirituality in the lives of people with disability. Both were significant developments arising from this research and were derived from the voices and interviewee’s perspectives. The first of these, VALID’s ‘Statement of Spirituality’ was referenced in the previous chapter.

The second policy document, officially launched in November 2016 at its annual conference, was developed in conjunction with the Faith Communities Council of Victoria (FCCV Inc) (Appendix 19). This ‘Statement Concerning People with Disability’ was influenced by VALID’s Statement and came at a time when FCCV had been considering a clearer response to the needs of people with disability within Victoria. Both Statements have been pivotal in ongoing discussions for change in government and faith-based contexts.

The following chapters will address implications for practice. It is timely to review the progress of the research in the context of practical theology, particularly within the meta-framework of Whitehead and Whitehead’s three-fold model and method of theological reflection (detailed in 4.4.2) and engagement with social analysis.

225 7.5 Conclusion: where have we been and where are we going?

Chapter 1 outlined the historic, social, economic and political contexts and cultural resources. The current chapter has focussed on the Experience of the 14 interviewees whose transcripts provided life-narratives of ‘real human beings’.

Chapters 8 and 9 will now focus on the third pole of Whitehead and Whitehead’s model, that of Christian Tradition, offering critically important theological interpretations and discussion of the interviewee’s experiences and their understandings of spirituality. Chapter 10 highlights how this research has contributed to shifts in public policy regarding the importance of spirituality in the lives of people with disability.

Following Whitehead and Whitehead, the first component of attending has predominantly focussed on description of the research context in Chapter 1 and listening to people’s Experience as described in Chapter 7. In the next two chapters Attending will continue as a theological focus on friendship based on the interviewee’s narratives and an integration of relevant literature.

The second component of their method, asserting, will be demonstrated by integration of divine and human revelation, witnessing to scripture and other people’s convictions and insights (both interviewees and scholarly insights) in relationship with my own convictions and insights.

Action, the third component, will unfold with the call for the church to develop a praxis of friendship with adults with intellectual disability. Chapter 10 will describe the development of policy statements about spirituality by VALID and FCCV which are both part of this social action research, and their application. Engagement and advocacy with a range of organisations in the disability sector will be described, emanating from VALID’s Statement which is based on this research. A key goal is to effect further change in policy and service responsiveness to the dimension of spirituality. It will be by using social analysis that the praxis model, with its emphasis on liberation and transformation of a culture, will provide a dialogical framework for ‘right thinking’ (orthodoxy) and ‘right acting’ (orthopraxy).

226 It is also important to reaffirm my identity as a practical theologian seeking to influence closer cooperation and collaboration between the worlds of disability services and faith communities. The recommendations of action subsequent to these discussions, in Chapter 10 will reflect this identity and its importance in bridging the worlds of faith communities and social policy, aiming for an enhanced quality of life for adults with intellectual disability.

To help frame the next chapters, Brock suggests that there are three intertwining questions Christians may use to probe meaning about the phenomenon of disability and they undergird discussion:

(iv) “For whom are we to care, and what sort of care ought Christians to provide?” The activist discourse.

(v) “What is sickness or disability in relation to what we know of human wholeness and health?” The discourse of definition.

(vi) “What sort of people do we have to become in order to rightly perceive and love all people, including those whom we might wish to shun?” The existential discourse.6

6 Brock, Disability in the Christian Tradition, 12.

227 Chapter 8: Analysis of Emerging Themes

8.1 Introduction

The task of this thesis as a work of interpretive bricoleur continues. In producing this bricolage of pieced-together representations woven into the specifics of a complex situation, the interlocking parts of this investigation seek unity for the purpose of the whole.1

In Chapter 2 the foundational dialogue strongly claimed that the relationship between spirituality and disability is significant.2 Much of the literature is concerned with Burton Blatt’s early question about the meaning of mental retardation (sic), and under the surface of that question, the compelling and exciting meaning of life itself.3

This research and the voices of 14 people contribute new knowledge to that corpus, bringing an important and distinctive perspective: the direct experience, thoughts, dreams, hopes, challenges and reflections of adults with intellectual disability. What do they say about the meaning of their lives?

The task now is to reflect theologically on the lived experience of the 14 interviewees and develop a response which “enables faithful participation in God’s redemptive practices in, to and for the world”.4

Phenomenology’s commitment to lived experience and knowledge, described and interpreted via the textual practice of reflective writing, explores the ti estin question, “What is it like?”5 The investigation and analysis of this phenomenon of spirituality, as defined by the 14 adults with intellectual disability, will reflect in the final chapters on emergent themes. By describing the phenomenon through a process of engaged writing and rewriting (logos), the aim is to construct a text which in its dialogical

1 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 4. 2 As reflected in literature concerned with ethical, scriptural and ecclesial understandings and responses and often written by practitioners and scholars who have personal or familial experience of disability. 3 Burton Blatt, The Conquest of Mental Retardation (Austin, Texas: Pro-Ed., 1987), 77. 4 Swinton and Mowat, Practical Theology and Qualitative Research, 6-10. 5 van Manen, Researching Lived Experience, 38.

228 structure and argumentative organisation achieves clarity and focus as a response to the research questions.6

8.2 Important elements of this constructed text – analysis and praxis

This constructed text will be informed by and contribute to the two theological movements at play within the literature. On the one hand, the proponents of the disability studies approach, with modern values of autonomy, empowerment and individualism, provide images of God that move from a human experience of disability to a modified understanding of God. On the other hand, some images of God emerge from doctrine and tradition, and are then clarified and revivified through interaction with the experience of disability.7 It was already anticipated that the human experience of disability would shape the researcher’s understanding of God. However it is also expected that images of God, especially as Friend, which emerge from doctrine and tradition, will be clarified, focused and energised through interaction with the experience of disability.

In keeping with the artistic root metaphor of this research Young reminds us that to:

… learn from the handicapped (sic) requires a new heart and a new spirit within us, but if we are prepared to learn, it will produce the new heart and new spirit and we will be immensely enriched – indeed, it will be our salvation. We shall discover what it really means to be human.8

Emphasis on the artistic root metaphor, in contrast to the mechanistic (see 4.5.1), can provide a welcome antidote that protects the preciousness of humanity and earth. This metaphor proposes a vision of society as a work of art, flowing from the creativity of communities rooted in solidarity with each other and which bring together creative strands of thought in understanding social realities and religious dimensions.9 This research also seeks an understanding of social realities and religious dimensions in

6 van Manen, Researching Lived Experience, 30-34. 7 Swinton, “Who is the God we Worship? 281-297. 8 Frances Young, Face to Face: A Narrative Essay in the Theology of Suffering (Edinburgh: T&T Clarke, 1990), 183. 9 Holland and Henriot, Social Analysis, xvi - xxi.

229 the pursuit of faith communities and a society which values the beauty and humanity of this alienated population.

Social analysis commenced in Chapter 1 through discussion of cultural, historical and social factors and, consistently grounded in Christian theology, will be prominent when discussing the implications for practice in Chapters 9 and 10. This provides an approach which should inform the critical praxis that follows the analysis. This is found in the biblical perspective on the situation: the option for the poor and the struggle for liberation. Out of the juxtaposition of analysis and gospel emerges the new praxis, which itself is subject to the same process.10

Praxis rooted in theology finds its fulfilment in both ‘right thinking’ (orthodoxy), and in ‘right acting’ (orthopraxy), a dialogical dynamic that is integral to the discussions to come. Bevans reminds us that:

True Christianity … must work against such oppressive structures not just seeking to change certain features, but by seeking to supplant them completely. Liberation and transformation, not just gradual development or friendly persuasion, is the only way that men and women can fulfil their call to be genuine children of God.11

In Kellenberger’s interpretation of the artist identifying with Israelite wanderings in the wilderness, the five men are holding onto the same rope “lest they should lose one another.”12 Again, imagine holding onto this rope and recalling the powerful image of connectedness as we seek an understanding of the threads in the 14 interviewee stories. It is to be hoped a new heart and a new spirit will emerge in our faith communities and public policy responses.

8.3 Issues raised by the interviewees as important

As a bricoleur I will draw together the threads and themes of the words and lives of 14 people which speak to the meaning of spirituality for this small and valued group. Can a ‘grounded meaning’ to the concept of spirituality be determined? Given my specific

10 Ballard and Pritchard, Practical Theology in Action, 66. 11 Stephen B. Bevans, Models of Contextual Theology (New York: Orbis Books, 1996), 66. 12 Kellenberger, “Biblical Exegesis,” 423-424.

230 interest in the topic of friendship, are there insights from their interviews which not just inform but add depth and colour to the importance of friendship with God and with other people? 13

8.3.1 When I say the word spirituality, what do you think of, what comes to mind?

This open question was significantly represented by responses that referred to God and/or an active sense of faith or relationship with God or Divine other, as understood in Christian terms. This intimacy was expressed in a form of communication with God that was coloured by a sense of security and comfort within the relationship. Many referred to participation in faith communities, implying that the structure of rituals, liturgies, and ceremonies contributed positively. However, overwhelmingly, it was the experience of being there alongside loved ones or friends which was highlighted. For example, when comparing personal prayer to formalized liturgy, Bill’s words were poignant as they clearly attached spirituality to the idea of God as friend:

“I couldn’t fit that … at least this way, it’s not religion as such, it’s relationships – he’s your friend. God’s your friend.”

8.3.2 What makes you feel good about yourself?

Designed to explore issues of value, this question revealed strong associations between self-worth and involvement with a range of social activities. This could be either with family or in a range of contexts, be they residential, Day Centre activities or the pursuit of extra-curricular leisure interests. Feeling good about oneself also included comments about the importance of an independence which gave rise to a strong sense of agency in self-organisation and being the one who initiates activity. This extended to assisting others where possible, including volunteering which provided immensely satisfying experiences of giving and caring and being valued. This focus beyond self was also expressed by one person as embodied in helping people

13 This is consistent with IHP and Heidegger’s concept of Dasein, or ‘being in the world’; the awareness that self cannot be separated from the world. Heidegger believed that our activities and understandings of the meaning of things can only be understood in the context of our relationship with the world. He considered language, thinking and being to be one and only through language could ‘being-in-the-world’ be understood.

231 know who God is, a sharing of faith as something of great value, whilst other overt references to God related to feeling good about a personal relationship with God.

8.3.3 What do you like best about your life?

Designed to explore meaning, this question prompted a range of responses and stories about shared activities and consequent joy and pleasure. Again, but with the added and significant dimension of mutuality of support and care, deep satisfaction was also found in the activities associated with volunteering with older, vulnerable people. A strong thread woven through the responses to this question was that of self- contentment and acceptance of ‘life as it is’, perhaps even in discovering a community of acceptance with others in similar ways of being. Being ‘different’ or having the ’disability cards dealt you’, was described by two respondents in positive terms. Without in-depth introspection in the conversation, this issue of identity and self- acceptance appeared to be quite naturally very important as people recounted the things they did and enjoyed because of who they are, and not in spite of it – a state of existential peace. One person spoke excitedly about how conversion to Christian faith had radically altered their perception of life: from a negative outlook to a positive one where life is beautiful, and, with more shades of colour.

8.3.4 Are friends important to you and why?

The fourth question was directed towards friendships and why they might be significant. This is the focus of discussion in Chapter 9 where the concept of the importance of friendship will be developed and elucidated, based on the belief that friendship with people with intellectual disability is essential to a new orientation within Christian faith communities. There was unanimous affirmation of the importance of friendship in the constellation of relationships that constituted people’s lives. Sometimes a staff member was also considered a friend and even pain or disappointment in relationships emphasised their importance. Specific friendships were alluded to which usually related to difficulties when expectations of that ‘special’ friend had not been attained or sustained.

People spoke about the feelings that friendship engendered: contentment, happiness, safety and mutuality. Also noted were the attributes and benefits of friendship, the most striking being that friends provide kindness, care for each other in good and bad

232 times. Even mutual listening accompanied by challenges to each other’s values and beliefs offers a life education where they provide learning between each other.14 There is also what could be called a spiritual presence to friends. Friends who may not be physically present, but who nonetheless remained friends over many years through a shared history, previous connections or shared pleasures were also noted as significant. Whilst many people expressed satisfaction with their current friendships, some expressed a desire to have more friends. One in particular noted the making of new friends at her Church emphasising a clear link between friends and happiness and even being in a state of happiness that can generate friendship, a powerful insight:

“… so I want to feel like I am more happier … maybe make some new friends in Church.” (Mary)

8.3.5 What do you want to do with your life?

Exploration of the dimension of hope in people’s lives brought responses that broadly clustered around aspirations to pursue tangible goals such as a dream holiday or a fulfilling activity. Many of these aspirations involved family, friends or associates, with four people hoping for ‘special’ friends with whom they would like to pursue their dream. Of note, three people, looking beyond their immediate context or personal state of being, referred directly and indirectly to how the world might be a better place. Politicians were referred to as agents of change. One person hoped for a world that was kinder and much less hostile towards people with a disability, thinking again of the needs of others beyond themselves as well as the social reality of change and having a socio-political conscience or awareness.

8.3.6 Do you think there is a God?

This question explored the dimension of Transcendence. Responses were firstly categorised into accounts of their associations with Church-based activities and life, and secondly into the characteristics ascribed to God. Participation in church-based activities was very positive and for some, effusively so. The significance of a place of deep attachment with expressions of love towards the people or towards the rituals, including Communion, was clear and strong.

14 These characteristics and functions of friendship are consistent with those suggested respectively by Parlee and Wellmann (see 3.2.2).

233 Attributes and the nature of God were identified through prayer as an important part of connection and communication with God. Prayer prompted an inner qualitative state described by feelings of contentment as well as an outward-focused, altruistic awareness of the needs of others – a sort of classic journey inwards, journey outwards. As well as an inner life with God, transcendence was also expressed through images of God located in a far-away place, heaven, and interestingly that that is where deceased loved ones are, a comforting co-location. In their absence, and accompanying sadness, there appeared to be some comfort drawn from knowing they were in heaven with God. God’s existence was explained with expressions of awe and wonder, imagining that the world could exist as part of the solar system. This creative source was described by another person who connected the creation of human beings and the intricacies of the human body as proof of God’s existence, along with references to God’s supernatural powers as witnessed in the miracles of Jesus.

8.3.7 Why do you think you are in the world?

Concerned with issues of Existentialism, the question sought to discover why people thought they were in the world. Some responded initially with very concrete responses, linking the question to everyday domestic activities of eating, sleeping, healthcare and birth. To move past these literal responses, perhaps the question could be reframed in future to be: “Do you think you have a reason for being alive? If so, what is it?” A fascinating array of responses emerged nonetheless as the question was clarified and people explored the reason and purpose for their life. All spoke primarily of connectivity with God, family, friends and associates. This vocational/existential dimension revealed a range of underlying purposes once again including helping others in need and bringing non-believers to faith. Purpose and reason seem to be strongly connected to a spirituality of belonging (to God) and service to others. In addition to being concerned about their own lives, there was the recognition that they are part of the world around them as well, with a unique purpose expressed as a personal spiritual quest and search for God:

“I’m here for the same reason all of us are. I mean like we have come here to … see … that someone we should have found a long time ago.” (Cameron)

8.3.8 Do you like being in nature?

234 It became apparent the Environmental domain was an important concept. ‘Awe and wonder’ emerged as responses to beautiful sights and seasonal changes, and this had positive effects on their thoughts, feelings and emotions. Enjoyment of the natural realm was experienced at both an individual level and in the company of friends, a connectivity expressed by clear and open references to God’s creative initiative and ongoing presence. A sense of personal relationship with God enhanced the experience as they observed beauty, dwelt within it and responded with delight. Inclusion of this question was an important acknowledgement of the role the natural realm plays in connecting people to its creative forces (Creator), and to others with whom they share it. Through a simple, nurturing observation Cameron expressed a belief in our shared, common humanity and our shared, generative intimacy with nature:

“Love nature – all started off in the Garden of Eden didn’t we? I like the outdoors. I like … the air’s a lot freer … you notice the flowers, the pollination, the trees … the sky.”

For future researchers using Swinton’s template, this depth and clarity of response strongly suggests that this domain be added to the question template.

Question nine provided the opportunity for further comments about spirituality which may have emerged during the interviews. As revealed by the percentage of time spent per question (Table 3) this question yielded a total of only six minutes for all interviewees, the least for any question. However, perhaps as in the case of disclosure of deep issues as one is leaving a pastoral visit, it provided an opportunity for some profound responses in which people spoke of their loss and grief, personal experiences of as well as the need to belong somewhere. Perhaps trust and a sense of safety had developed well enough for this to happen so this raises the idea of follow-up visits in future research. In the case of faith communities, said one person, the experience of people with disability can be problematic, indeed outright discriminatory. This comment by Bill strikes right at the heart of the reason for this study and given the context of spirituality and Church, emerges as perhaps the prophetic challenge that speaks for all participants.

“ … and there are those which outright discriminate … like some of your bigger style churches that have to have everything perfect …

235 I don’t think that’s OK. And it’s something that needs to be dealt with … in some way, shape or form.”

The final question did not generate much new information, but this was revealing. People did not generally see the need for any changes and said that their lives were largely content as they were. I took these responses at face-value without probing further. However I was somewhat surprised that there were no more new suggestions, with the exception of one person who strongly stated there was a clear lack of acknowledgement of the spiritual dimension in the lives of people with disability. There was also an assertion that there needed to be greater attention by organizations, without specifying which ones, to address the issue so that people with disability could more readily express their spirituality. This sense of ownership then becomes a call to action.

“I think a few of these organizations can do more to advocate in this area … to make sure that people with a disability get that side of that particular aspect gets looked after a bit more (sic) … because at the moment there is very little … and it could be a lot better.” (Bill)

Catching the layers of meaning within the responses has provided an understanding of people’s life experiences appearing as stories and comments that are consistently aligned with a spirituality of relationship(s). Fisher’s paradigm of Spiritual Well-Being (SWB) framed spirituality as a matrix of 4 domains, all in relationship with each other: Personal, Communal, Environmental and Transcendental Other.15 The two superordinate themes derived from these interviews resonated with the findings and sat comfortably with VALID’s Expert Group:

(i) Connectedness with others, and

(ii) Connectedness with God/deity and self.

I view this sense of spirituality as essentially expressive about relationship(s). Such relationship(s) and connectedness within and across domains had a range of emphases for participants and stretched across the seasons and cycles of their lives.

15 Fisher, “The Four Domains Model,” 17-28.

236 8.4 Superordinate themes: spirituality defined by relationships and connectedness

Spirituality for this group of people has relationship at its core. All domains of Fisher’s Spiritual Well-Being Index were present to varying degrees with interviewees giving expression to one or more domains in response to a question. In the course of an entire conversation, relationships and connectedness to most of the domains was evidenced. Friendship, as one important expression of relationship within spirituality, was frequently referred to by interviewees, particularly in the domains of Personal, Communal and Transcendental Other. The addition of the fourth domain, Environmental, also elicited responses which contained elements of relationship with God as well as clear enjoyment of the natural world in the company of friends.

Section 3.6 referred to the scant number of research projects and literature on how people with intellectual disability experience their spirituality, and to those we now briefly return to reinforce and further inform the analysis and findings of this research.

As a take-off point I will allude briefly to Swinton’s work. Using open-ended, semi- structured interviews with three groups of people with intellectual disability, he concluded that the most prominent theme to emerge was the importance of personal relationships; friends and family ranked most importantly in their lives and provided value, hope and meaning. Others also referred to the importance of having a home where they could offer hospitality to their friends:

“Where I live … I like to go home … good to have a place which was your own … somewhere you could take your friends and do what you want to do without others breathing down your neck.”16

For our 14 respondents, the quest for security and friendship that was apparent reflected a basic spiritual need, and indeed a quest which is fundamental to being human. Swinton notes that friendship, hospitality and personal relationships were prominent:

16 Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities. Unpublished.

237 For all of the participants, to a greater or lesser extent, it was friends and family who ranked most importantly in their lives and it was through these relationships that people found meaning, value, hope and purpose.17

Almost without exception, all group members felt that there was a God or a higher power. This was expressed in different ways but most interestingly Swinton notes that God was spoken of in “non-supernatural” ways, that is in human-like terms such as “friend,” “me mate,” “a good man,” “the gaffer” etc.18 Swinton and Powrie’s findings from 19 interviews held across the UK relates directly to the current research which was based upon the seven questions in their interview schedule. Swinton and Powrie’s conclusion affirms a diversity of spirituality whether with a UK population or an Australian one:

It is complicated and personal. Nevertheless, the participants in this study were clear that relationships with self, God and others lay at the heart of their understanding of spirituality. It would appear that spirituality is fundamentally a relational concept that may be expressed vertically towards God or horizontally towards other human beings. Both are authentic forms of spirituality that need to be respected and understood not as general phenomena but as unique human experiences.19

This vertical-horizontal relationship, in the Accessible Summary of their report, echoes my findings, as noted from this extensive quote filled with resonance and relevance: 20

…friendship was the most important thing in their lives. Sometimes … with God, sometimes it was with people they liked. All the people we spoke to felt that having friends was an important part of their spirituality.

People valued the work of carers and support workers. But, they wanted friends who chose to be their friends rather than people who were paid to look after them … Some people found it difficult to meet people and make friends. They were very lonely.

Some people said that religious communities were good places to find friends … by going along to services of worship and meeting people. Some religious communities were very good at making people with

17 Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities. 18 Swinton, The Role of Spirituality in the Lives of People with Learning Disabilities. 19 Swinton and Powrie, Why are we Here? 16-22. 20 Accessible Summary is the equivalent term in the United Kingdom for Easy English.

238 learning disabilities feel welcome. But in others, people found the services difficult to understand because there were lots of words they did not understand. Some people found that religious people were friendly towards them but never invited them back to their houses. The people with learning disabilities we spoke with wanted people to become real friends who would stay their friends for a long time.21

In another project, Swinton et al describe the process of engaging with seven individuals (all adults bar two) with high support needs, their families and carers in an intentional process called MAPS (Making Action Plans), to plan a structured response to expressed spiritual needs. Four themes emerged:

(i) Friendship

(ii) Personal leadership

(iii) Inclusion and belonging

(iv) Understandings of practical spirituality

As for friendship, all carers, parents and key workers longed for the person who was the subject of MAPS to have friends, even if only one friend.22

Gangemi et al also identified a relational spirituality at the core. Many similar themes to the preceding studies emerged, including the importance of friendship. One notable exception, whilst implicit in previous studies, was that of an urgency to narrate stories, and that this was only possible through a relational experience. The importance of exchanging stories contributed to Gangemi’s conclusion that again resonates with our group of 14:

All these reflections are leading us toward; a spirituality ‘of being’ rather than ‘of mind,’ ‘of presence’ rather than ‘of ability’. We might define spirituality as being present and attentive to the other, reciprocal exchange and real, authentic encounter.23

21 Swinton and Powrie, Why are we Here? 7-8. 22 Swinton, Baines and Mowat, Understanding the Spiritual Lives of People with Profound and Complex Learning Disabilities, 83-111. 23 Gangemi et al., EveryBody has a Story, 76.

239 This definition speaks of a ‘container’, a paradigm, in which people with intellectual disability potentially encounter and nurture relationships that contain vertical and/or horizontal possibilities: with God and/or others.

The two superordinate themes of the current research project are broadly consistent with the findings of these other relatively recent PAR projects referred to above and detailed in Chapter 3. Given the perspectives and voices of research participants which associate spirituality with connectedness with God and/or others, and particularly named as friendship, a theology of friendship and the call to faith communities will be developed in the remainder of this chapter. Kellenberger’s image of the five people in the desert, connected by the green thread of hope, is a timely reminder as we enter the next section of discussion.24

8.5 Connectedness, friendship and faith communities

The current study, using Swinton and Powrie’s template, also discovered friendship to be profoundly significant for this cohort with intellectual disability:

i. Friendship provided pleasure and a sense of well-being when engaged in shared activities;

ii. in times of need friendship was the means by which support was both given and received;

iii. friendship provided a sense of community;

iv. intimacy was experienced in smaller numbers and one-to-one:

“Friends make me feel safe and happy inside.”(Julie)

“Friends teach me a lot of things and give me good advice.” (Jason)

“Yes they are important to me. I like my friends very much.” (Stephanie)

24 Kellenberger, “Biblical Exegesis,” 418-425.

240 Without in-depth questioning about friendship per se, this research nonetheless elicited definitive responses from all interviewees about its importance in their lives generally, and more specifically, about its role in the expression of their spirituality.

Whilst a small number of people reported problematic issues with particular relationships, others said they would definitely like more friends. No respondents spoke of not wanting friends.

Connectedness as an integral component of people’s spirituality was also validated by the aggregate of time spent (Table 2) which confirmed that 86% of all responses and conversational content was related to personal connectedness and relationships (refer to 7.2.2). Connectedness, particularly friendship with others and with God was the most important part of people’s lives. Many, like Mary, sought more friendships in order to counter isolation and to enhance quality of life:

“… so I want to feel like I am more happier … maybe make some new friends in Church.” (Mary)

“I want more friends and more friends getting along with me.” (Igor)

“… he’s your friend. God’s your friend … you can talk to Him any time you want.” (Bill)

Of the 14 interviewees, 9 had strong associations with Christian faith communities, either in the past (4) or currently (5), suggesting that they have proved to be places of welcome. McVilly documented and corroborated the argument that some people with intellectual disability identified church communities as important places to find friends, and that friendships tended to be developed with people in roles of authority (e.g. youth group leaders).25 However, whilst there are signs of change, surveys indicate that generally a sense of welcome and inclusion or belonging has not been optimal, as evidenced by few numbers of adults with intellectual disability participating in faith communities. Bill highlights this:

“Well I think we all need to belong somewhere … and that also includes any folk with any sort of disability … there are some

25 McVilly et al., “‘I Get by With a Little Help from my Friends,’” 198-199.

241 churches around that are very welcoming … of such folk and will accept them … and give them opportunities to do things, but they are very few and far between.”

International studies highlight the low levels of inclusion of people with intellectual disability in faith communities, proportional to the general population (18.5%).26 In Australia the 2011 National Church Life Survey revealed 7.7% of church attendees identified with disability and in 2016 up to 15%. 27 Whilst these figures relate broadly to people with disability, it is to be hoped people with intellectual disability are significantly represented but this requires further research. Matthew Bogenschutz and Angela Novak Amado also cite recent and encouraging evidence of faith communities promoting inclusion in the United States. The Accessible Congregations Campaign results suggested that of the congregations which participated, at least 76% reported some enduring relationships between members with and without intellectual disability.28

This chapter will argue that what people in faith communities need to become, in relation to adults with intellectual disability, is shaped by prophetic imagination and enacted through friendship inspired by Jesus’ own radical friendship with people at the margins of society. Prophetic imagination will illuminate the church’s response and will be the context-specific lantern for which Diogenes’ hankered in his search for these ‘real’ people. In the case of this research project, real people are those whose presence in the church will enrich and make the church more ‘real’. As people with intellectual disability, their advocates and families increasingly feel emboldened to ‘name’ their experience of exclusion or, in theological terms, exile, and to claim a share of public resources and opportunities, faith communities are also called to respond in friendship.

If the answer to Blatt’s previous ‘meaning of life’ question is that connectedness and friendship for these 14 people are essential, Christian faith communities are called to

26 Erik W. Carter, Including People with Disabilities in Faith Communities. 27 Miriam Pepper and Ruth Powell and Nicole Hancock, Disability Inclusion: Church Attender Views and Experiences. NCLS Commissioned Report No. 2017.04. July 2017. 28 Matthew Bogenschutz and Angela Novak Amado, “Social Inclusion for People With IDD: What We Know and Where we go From Here,” in Critical Issues in Intellectual and Developmental Disabilities: Contemporary Research, Practice, and Policy (Washington: American Association on Intellectual and Developmental Disabilities, 2016), 26.

242 frame their response to this hope for more friendship opportunities. Harshaw’s discussion of meaning and interpretation of experience (2.4.2 (iii))29 referred to intellectual disability as illustrative of something and the same is true of Wolfensberger.30 This something is closely linked to Brock’s earlier stated need for an existential discourse which asks “[w]hat sort of people do we have to become in order to rightly perceive and love all people, including those whom we might wish to shun?”31 This calls for a prophetic response.

Discussion of ‘what sort of people faith communities need to become’, will be developed in Chapter 9 by engaging Brueggemann’s schema. For now we revisit the three forms of love, philos, eros and agape, and lay the foundation for the affirmation of agape as the vital inspiration which motivates the human response of friendship to God’s love and grace. For Christian faith communities, agape is always the forerunner in the establishment of relationships and friendships which aspire to mutuality and reciprocity, philos. This aim is captured well in Gaventa’s definition of friendship:

… a relationship characterised by mutual enjoyment, reciprocity and acceptance, in contrast to relationships in which a person is continually a ‘client’ or ‘consumer’ and constantly being treated, programmed or fixed. 32

The following section will explore contemporary interpretations of these three forms of love as they relate to expression of friendship within Christian communities, hopefully reinforcing the response by faith communities where friendship is understood in terms of ‘gift and call’.

8.6 Contextual discussion of philos, eros and agape

Campbell provides a helpful overview of perspectives that can extend this discussion boundaried by data and findings.33 Paul Tillich suggested that each form is incomplete without the others since all friendship contains elements of need and desire, and even

29 Harshaw, Prophetic Voices, Silent Words, 311-328. 30 Wolfensberger, “The Prophetic Voice,” 16. 31 Brock, Christian Reader, 12. 32 Gaventa, "Gift and Call,” 43. 33 Alastair V. Campbell, “Love,” in Rodney J. Hunter, ed. Dictionary of Pastoral Care and Counselling (Nashville: Abingdon Press, 1990), 666-669.

243 agape must still be earthed in material or human needs. Tillich however does give agape a special place, seeing it as the manifestation of the divine Spirit.34

Roman Catholic Martin D’Arcy and radical Protestant Anders Nygren have diametrically opposed perspectives. For D’Arcy the concept of mutuality in philos is paramount. The individual participates in the divine through friendship with God, and the more God is loved, the more the individual is capable of love of self and of others.35 Nygren adopts a diametrically opposed position to this synthesis of human and divine love. For him there are no points of connection between human emotions and God’s self-giving, because humans have nothing to contribute from their nature, due to their pervasively sinful state.36

Consideration of preference and reciprocity means that friendship has not always sat snugly at home in the Christian world, because it has had a difficult time justifying itself as an expression of Christian love.37 Agape has put friendship (when seen in terms of reciprocity) on the fringe because friendship is seen as preferential and subject to mutuality. In writing theologically about love and friendship, Meilaender captures this distinction: “Philos is recognised to be subject to change; agape is to be characterised by the same fidelity which God shows to his covenant.”38

More contemporary notions of friendship, previously cited by McVilly, include the psychological and sociological dimensions of intimacy, trust, care, bonding, loneliness, and growth.39 For Graham, if friendship is to be regarded as a particular type of interpersonal relationship in which all the dimensions of love are required, he is clear that religiously, acceptance and understanding within friendship are experienced as a means of divine grace. The resultant bond is a dimension of covenantal community,

34 Paul Tillich, Love, Power, and Justice: Ontological Analyses and Ethical Applications (Oxford, Oxford University Press, 1954), in Hunter, Dictionary of Pastoral Care and Counselling, 666. 35 Martin C. D’Arcy, The Mind and Heart of Love: Lion and Unicorn, a Study in Eros and Agape, (Kessinger Publishing, 1962), in Hunter, Dictionary of Pastoral Care and Counselling, 666. 36 Anders Nygren, Agape and Eros (London, SPCK, 1939), in Hunter, Dictionary of Pastoral Care and Counselling, 666. 37 Paul J. Wadell, Friendship and the Moral Life (Indiana: University of Notre Dame Press, 1989), 70. 38 Gilbert C. Meilaender, Friendship – A Study in Theological Ethics (Indiana: University of Notre Dame Press, 1981), 2. 39 McVilly, “‘I Get by With a Little Help from my Friends,’” 13-14.

244 and the growth and outcomes become evidence of God’s power for bringing into being new personal and social creations.40

New personal and social creations were evaluated (Chapter 3.3.2) with Schleiermacher contending that the limitations of gender had to be overcome, and that friendship was the starting point for understanding and for the freedom of both sexes to experience a fuller humanity.41 For Schleiermacher, the ultimate goal for women and men was that they become married, bound in perfect friendship, and for this to be manifested in family life. Friendship was the starting point for ‘climbing’ this ladder of social acceptance.

During the latter part of the twentieth century, and engaging with Schleiermacher, Mary Hunt would, I believe, celebrate his advocacy of women’s rights and his affirmation of their friendship. However, I suggest that would be where it would cease. Hunt takes quite a different approach by identifying friendship as sacramental, and developing a case for friendship as the relational norm within the Christian community.42 For many people friends have replaced family and marriage as the primary point of reference. Hunt notes that within the Christian tradition, friendship is often based on the mutual search for justice. This is what the Christian community has historically done best and needs to be more strongly claimed. Hunt seeks a world in which the phrase ‘just friends’ will be shorthand for the fact that friendship is the pinnacle of human relating.43 Within the Christian community how frequently have adults with intellectual disability attained that pinnacle?

For C.S. Lewis, friendships are about ‘something’, a seeing or caring about a common truth.44 Spirituality and friendship within the analysis of the research interviews can be seen as that ‘something’ that brings people together for a variety of reasons, be it enjoyment of each other’s company, a common purpose, or the meeting of needs and desires.

40 Larry K. Graham, “Friendship”, in Hunter, Dictionary of Pastoral Care and Counselling, 447. 41 Ruth Drucilla Richardson, The Role of Women in the Life and Thought of the Early Schleiermacher (1768–1806): An Historical Overview (New York: Edwin Mellen Press, 1991), 55-97. 42 Mary Hunt, Fierce Tenderness – A Feminist Theology of Friendship (New York: Crossroad, 1991), 128. 43 Hunt, Fierce Tenderness, 18-19. 44 C.S. Lewis, The Four Loves (London, Fontana Books, 1960), 61.

245 If the elements of mutuality and preferential love and the doctrines of grace and sin, all add up to a complex picture, then Gaventa offers a helpful clarification to this complexity. He states that in classic traditions, friendship was a great gift and treasure, a moral imperative, and that it was a human pathway to the divine. In the biblical tradition friendship reveals the grace, love and call of a caring God. Friendships are an expression of God’s grace, a grace that compels the reciprocal actions of both loving God directly, and loving God through the love of others as some of the 14 respondents described. However there are also similarities between the classical and biblical traditions, because the spiritual views of friendship in the biblical tradition also describe the experience of friendship as treasure and moral imperative. For Gaventa, from a biblical perspective, friendship needs to be understood in the context of both gift and call.45

8.7 On what basis might Faith Communities respond?

People with intellectual disability continue to live on the margins of a society which mostly, perhaps in an unwitting and unconscious way, casts them as people destined to live in a state of wilderness. Where is the hope in such an exilic existence? What pointers are there that this might be otherwise? How might the current moves away from a place of historical bondage be accelerated and how can God’s will be recognised and revealed?

This thesis asserts that whenever adults with intellectual disability experience exclusion, enacted consciously or unconsciously, individually their spirituality is impoverished and collectively the church is weakened and poorer as a result and merely living an illusory existence of unity and welcome. The church’s rich gifts and traditions of pastoral care and justice-seeking place it in a position to offer a distinctive response of welcome. Relationships and support can be developed which recognise that each person has been created in God’s image (Genesis 1:27). Jesus, in the parable of the banquet, calls the church to offer the warmth and light of welcome: “But when you give a banquet, invite the poor, the crippled, the lame and the blind” (Luke 14:13, NRSV).

45 Gaventa, “Gift and Call,” 45-46.

246 But what sort of welcome might the church offer? Will it be one of tolerance, which often has paternalism as a corollary, or will it be a genuinely open invitation which offers an atmosphere and culture in which gifts and graces are discovered and celebrated as they would for any other member? As Harshaw claimed when describing the prophetic presence of people with intellectual disability, their call to create relationships is strong:

You choose whom to love on the basis of the love they might be willing to give you. You spend time with those who will affirm the pleasure of your company. In disobedience to the words of Christ, you welcome into your homes people who will invite you back …46

It is contended that the pastoral move towards unity and reconciliation in which adults with intellectual disability are seen and experienced as equal members of the Body of Christ (1 Corinthians 12) is via friendship. For Christians this pastoral move is inspired by the non-preferential love embodied by Jesus in agape and it speaks of a new orientation in divine-human relationships. Agape’s critical importance has been discussed in the previous section and in Chapter 9 it will be claimed that agape, as exemplified in the life of Jesus, is what inspires a Christian response.

8.8 Towards the future: Brueggemann’s new orientation

Brueggemann’s ‘Prophetic Imagination’ schema with its focus on new orientation is based on the interface of ‘prophetic’ and ‘imagination’, engaging with the Exodus story and the Hebrews’ escape from slavery to freedom. This provides the vital memory that brought hope for the people throughout their history.

… the task of prophetic ministry is to nurture, nourish and evoke a consciousness and perception alternative to the consciousness and perception of the dominant culture around us.47

Such ministry is bound up in the two questions of this research. In the seeking of an ‘alternative consciousness and perception to the dominant culture’, it is my contention that friendship with adults with intellectual disability within faith communities is indeed

46 Harshaw, “Prophetic Voices, Silent Words,” 320. 47 Brueggemann, The Prophetic Imagination, 3.

247 a radical and prophetic sign of God’s presence; a new orientation. Chapter 9 will focus discussion on the first research question:

(i) Is friendship an expression of their spirituality? If so, how can faith communities respond?

The second research question explores an ‘alternative consciousness and perception to the dominant culture’, based on the findings. Such a consciousness also aims for government and NDIS policy recognition of the importance of spirituality. This will hopefully result in staff and community service agencies increasingly attending to people’s spiritual needs, which may also include connecting them with chosen and relevant and appropriate faith communities. This would be an expression of a new orientation within the service system. Chapter 10 will focus the discussion on the second research question:

(ii) How can the disability services sector respond? What action is needed?

If we are to imagine these alternative social realities as new orientations, then we will look for new horizons in which:

• low expectations for friendships are challenged and raised;

• more opportunities for friendship are created and nurtured;

• more supports for friendship are planned and fostered;

• spirituality is recognised as an integral dimension of people’s lives.

Brueggemann’s theological schema provides rigour and insight to the discussion, by use of its two functional qualifiers, critical and energising.

248 Chapter 9: Implications for Practice: Faith communities – The Embrace of Friendship

9.1 Introduction

This chapter, in response to the first research question for the thesis, will focus on the response needed by Christian faith communities in embracing adults with intellectual disability. Brueggemann’s theological schema provides the framework of a ‘prophetic imagination’ for discussion of enhanced friendship opportunities.

The functional qualifier critical will challenge exclusionary influences by theologically examining 5 key factors which need to be dismantled to enable such an embrace:

(i) Body image

(ii) Cult of normalcy and otherness

(iii) Healing and wholeness

(iv) Independence and vulnerability, and

(v) Fear of the stranger/xenophobia.

The functional qualifier energising will engage understandings and appreciation of 5 pre-conditions and actions required to facilitate the new orientation:

(i) Trinitarian anthropology

(ii) Interdependence and vulnerability

(iii) Servanthood and friendship

(iv) Love of the stranger/filoxenia

(v) Embrace of friendship.

These factors are congruent with and informed by the content of the 14 interviews. In this analysis and discussion of the critical and energising factors, direct quotations from the co-researchers will illustrate each point. New Testament references to Jesus

249 as Friend will highlight how the life and actions of Jesus may provide a theologically reflective basis for the response of Christian faith communities.

In the next section Brueggemann’s schema will be critically reviewed to provide a framework for discussion of a ‘prophetic imagination’ of enhanced friendship opportunities within Christian faith communities.

9.2 Brueggemann’s theological schema – Prophetic Imagination

I am drawn to this schema’s alternative perception of reality and its challenge for communities to examine oppressive ideas and practices. Brueggemann’s schema focuses on the parallels between the exiled Israelites and the place of the church in contemporary American society. Using this device for analytic and discussion purposes requires caution.

It is important to distinguish between the different identities, culture and experiences of the Israelites and the cohort of 14 people in this project. For the Israelites, liberation was defined by the return to their spiritual centre; for this research cohort liberation and transformation have been defined by a better quality of life that expresses the deep significance of connectivity, both divine and human. The common element of both however is the experience of exile and the hope of a liberation or transformation of circumstances to a better life. For Brueggemann:

… “exile” is a rich and supple metaphor. As the biblical writers turned the metaphor of exile in various and imaginative directions, so may we … this metaphor mediates our experiences to us in fresh ways.1

The schema begins with Moses’ intention to dismantle the oppressive empire of Pharaoh, the royal consciousness. He also planned the formation of a new community focused on the religion of God’s freedom and the politics of justice and compassion. The dismantling begins in the groans and complaints, the criticisms, of his people. The energising begins in the doxologies of the new community. However the Moses movement proves to be too radical for Israel and the old history of Pharaoh is continued in the monarchy of Israel. The monarchy is effective in silencing the criticism

1 Walter Brueggemann, Cadences of Home: Preaching among Exiles (Kentucky: Westminster, John Knox Press, 1997), 11.

250 and denying the energising, but the kings are unable to silence the prophets for too long.

The prophetic hope for Israel is “the repeated insistence that the new future will be God’s doing and will depend on God alone.”2 Antony Campbell says the prophets:

… were firmly convinced of the sure commitment of God’s love for Israel that they could speak confidently of a new and hopeful future … It is in these of a new future that Israel gives us its most eloquent witness to God’s unconditional love.3

The alternative consciousness wrought through Moses is characterised by Brueggemann’s use of two functional qualifiers, critical and energising. Prophetic criticism, critical, has two broad dimensions in this story of liberation from slavery. Firstly, in the Exodus narrative the politics of oppression are overcome by the alternative of justice, as illustrated by the plague cycle.4 The biblical narrative culminates with:

Aaron stretched out his hand with his staff, and struck the dust of the earth, and gnats on humans and animals alike; all the dust of the earth turned into gnats throughout the whole land of Egypt. The magicians tried to produce gnats by their secret arts, but they could not (Exodus 8: 17 - 18 NRSV).

The second dimension of criticism concerns the voices of grieving complaints of the people of Israel;5 another narrative of voice, listening and covenantal/relational response:

The Israelites groaned under their slavery and cried out. Out of the slavery their cry for help rose up to God. God heard their groaning, and God remembered his covenant with Abraham, Isaac and Jacob. God looked upon the Israelites, and God took notice of them (Exodus 2: 23 - 25 NRSV).

For as long as the pretence is kept alive that things are all right, there will be no real grieving and no serious criticism. Brueggemann conjectures that this primal scream

2 Antony F. Campbell, The Study Companion to Old Testament Literature: An Approach to the Writings of Pre-Exilic and Exilic Israel (Wilmington, Delaware: Michael Glazier Inc., 1989), 393. 3 Campbell, The Study Companion, 394. 4 Brueggemann, The Prophetic Imagination, 10. 5 Brueggemann, The Prophetic Imagination, 11.

251 which announces the beginning of history, is a cry of misery which also functions as the official filing of a legal complaint. This research project contends that it is not acceptable for adults with intellectual disability to live lonely and isolated lives (aliens). The disability rights movement’s critical voice is enabling the grieving complaints to be increasingly heard. Such critical voices are also being increasingly heard from within faith communities, reflected both in scholarship (the review of literature in Chapters 2 and 3), and in comments and feedback from the 14 co-researchers.

Energising, the other functional qualifier, is closely linked to hope, and Brueggemann identifies three dimensions. Firstly, in the darkness of bondage the narrative knows that the darkness may be trusted to God, as it surely cannot be trusted to Pharaoh. Secondly, in Exodus 11:7 there is a wondrous statement of a new reality that surely must energise in which Moses, with passion and energy, takes side with those who are powerless and marginalised:

But against any of the people of Israel, either man or beast, not a dog shall growl; that you may know that the Lord makes a distinction between the Egyptians and Israel.6

Thirdly, there is the energising reality of a new doxology proclaiming human freedom:

… the language of empire is surely the language of managed reality, production and schedule and market … Only where there is doxology can there be justice, for such songs transfigure fear into energy.7

This research project is symbolic of this energising reality in that it has intentionally aligned itself with a network of people who are powerless and marginal and also discouraged from participating in markets and productivity which would enhance their material lives.

In conclusion Brueggemann asserts that Jesus of Nazareth not only spoke prophetically but also practised in most radical form the main elements of prophetic ministry and imagination. Jesus practised criticism of the deathly world around him,

6 Brueggemann, The Prophetic Imagination, 15. 7 Brueggemann, The Prophetic Imagination, 18.

252 his crucifixion embodying that which was dismantled, and also practised the energising of the new future given by God, fully manifested in his resurrection.8

In the practise of ministry, it is time to wake up to the challenges of forging relationships beyond current patterns. For Brueggemann, prophetic ministry offers:

… an alternative perception of reality, and community that knows it is about different things in different ways … [and] … a variety of relationships with the dominant community. That prophetic ministry seeks to penetrate the numbness in order to face the body of death in which we are caught … [and] … seeks to penetrate despair so that new futures can be believed in and embraced by us all.9

9.3 Jesus as friend

Any discussion of friendship that reflects the tonalities of the 14 co-researchers must revisit the theological themes of Chapter 1 as they provide the bedrock for the discussion. In the New Testament Jesus is referred to as ‘friend’ on two occasions that are foundational to the message of Jesus, firstly in Luke’s gospel:

The Son of Man has come eating and drinking; and you say “Behold a glutton and a drunkard, a friend of tax collectors and sinners!” (Luke 7:34 NRSV)

Jesus’ ministry is described as one in which he challenged the boundaries of social acceptance and exclusion by seeking to be in relationship with people considered outcasts and strangers, those on the margins who experienced shame and rejection. In John’s gospel we read:

No one has greater love than this, to lay down one’s life for one’s friends. You are my friends if you do what I command you. I do not call you servants any longer, because the servant does not know what the master is doing; but I have called you friends (John 15:13 - 15 NRSV).

Here the sacrifice of one’s life is the highest form of love, manifested as friendship. The switch from being servants to friends is most significant for the relationship between Jesus and the disciples, essentially a community. As outlined in Chapter 3, in classic traditions, friendship was a great gift and treasure, a human pathway to the

8 Brueggemann, The Prophetic Imagination, 3-19. 9 Brueggemann, The Prophetic Imagination, 116-117.

253 divine. In the biblical tradition friendship reveals the grace, love and call of a caring God. Friendships are one of the expressions of God’s grace, a grace that compels the reciprocal actions of both loving God, and loving God through the love of others. Friendship needs to be understood in the context of both gift and call.10 Reinders echoes this:

As human beings, our vocation is friendship with God, but usually our reflective self gets in the way of trusting God. Being with an intellectually disabled person teaches us precisely this painful lesson. It paves the way for our friendship both with them and with God by teaching us that we can only give friendship after we have learned to receive it.11

In shifting the emphasis from service to friendship, was Jesus pointing to a different way of being recognising that servants were often the poor, women or others who had no power? So often, within community support systems, relationships are bound by professional roles and self-protection which mitigate against development of natural friendships between staff and ‘client’. Staff also are not encouraged to see their role as facilitators of friendship within community settings, including faith communities. Christ’s upside-down model of service seeks an equality based on the expression of friendship. Such an equality speaks to the heart of the biblical tradition, which cries out for justice. Justice for people with disability is an on-going struggle for acceptance, and for the fruits of a society which many people take for granted.

Can we imagine a new orientation in which adults with intellectual disability become friends in relationships of reciprocity in which they are perceived and known as people who give as well as receive? This is indeed a radical hope and imagining, prophetic even. In Chapter 3.6.4 Swinton et al raised the question of friendship’s meaning: “… can you have a friendship with someone who does not reciprocate or reciprocates in unusual ways?”12 In earlier analysis of the literature (2.4.2 (iii)) pertaining to the meaning of intellectual disability, Wolfensberger described people with intellectual disability as contemporary prophets who symbolise resistance to the technological age and provide an alternative voice to all that is powerful in society.13 Harshaw paralleled

10 Gaventa, “Gift and Call,” 45-46. 11 Reinders, Receiving the Gift of Friendship, 225. 12 Swinton, Baines and Mowat, Understanding the Spiritual Lives of People with Profound and Complex Learning Disabilities, 108. 13 Wolfensberger, The Prophetic Voice, 16.

254 Wolfensberger’s insight by suggesting that the Church has been subtly captured by a prevailing culture that elevates normalcy and conformity and equates goodness with autonomy, independence and power. Based on Jesus’ interactions with people who were socially and religiously marginalised, an encounter and time spent with people with intellectual disability is an encounter with Jesus and therefore a deepening of the relationship with God. Harshaw asks the question that resonates with the essence and purpose of our second research question: “So of what might believers, individually and corporately, hear these prophets speak?”14

In recalling Hallahan’s question from Chapter 1: “How do relationships become transformational for all of us?” communio is defined as: ‘loving, moral journeying’, with the emphasis on community as verb rather than noun. In the exploration of the qualities of people who can be mobilized to bridge differences, and in writing of the work of embrace she reminds us:

We are inviting people into the lives of stigmatized people who are considered burdensome, disturbing, frightening, incapable of mutuality, demanding, or just plain unworthy and less than human. Many people with impairments are seen as the irremediably troubling other. We know that just being in a place or hoping for a friend to emerge does not overcome deeply ingrained practices of exclusion. So the question remains, is there any way into people’s hearts?15

Using Brueggemann’s functional qualifiers, critical, and energising, the following two major sections, with subsections, will firstly theologically analyse and discuss major barriers and resistance within faith communities to relationship and friendship-making (critical). Secondly, discussion will focus on what will support and enable faith communities to move beyond the barriers (energising) which impede a new orientation to become more intentional about the move from being strangers to being friends, from exclusion to embrace. This is where faith communities may recognise friendship with adults with intellectual disability in terms of ‘gift and call’.

14 Harshaw, Prophetic Voices, Silent words, 319. 15 Hallahan, “Believe that a Farther Shore is Reachable from Here,” 33-44.

255 9.4 CRITICAL issues

The central question for this section is: what needs to be dismantled within Christian faith communities in order to mitigate the dominating influences of exclusion? This question needs to be interrogated in the pursuit of criticism about faith communities as places of welcome and friendship with adults with intellectual disability. A multitude of factors must be dismantled. Each one could be the subject of a thesis, but for this purpose five key factors will be explored in developing a critical framework as a forerunner to discussion of the five energising responses that engage Creamer’s summarising of three innovative models or images of God from the literature. Described in 2.3.5 they are: The Accessible God; The Interdependent God and The Disabled God.16

9.4.1 Body image

As noted, Eiesland’s Disabled God image (2.3.5.3) rejects the notion that disability is in any way a consequence of individual sin, the scars of Jesus verifying this claim. Jesus did not sin yet became disabled.17 Sharon Betcher complements Eieseland:

… by creating the set-aside named ‘disabilities’, society shields its eyes from the vulnerability of birth and the risk of becoming; it already buffers the existential conditions of precariousness by marginalizing certain bodies and excluding them from the pool of aesthetic value.”18

Elizabeth Grosz asserts that the dominance in the west of the white, youthful, able, male body image, functioning as the ideal human body, can only be undermined by a defiant affirmation of a multiplicity of fields of differences, of other kinds of bodies and subjectivities.19 The advocacy movement over recent decades has strongly critiqued this ideal image. Affirmation, sense of self-acceptance and defiance of the ‘ideal human body’ was captured when discussing meaning in question 3 of the interview template. When asked what the best thing in his life is, Jason’s emphatic response tells a new story of identity and self-belief:

16 Creamer, “Theological Accessibility,” 2. 17 Creamer, “Theological Accessibility,” 6-7. 18 Sharon Betcher, Spirit and the Obligation of Social Flesh. A Secular Theology for the Global City (New York: Fordham University Press, 2014), 9. 19 Elizabeth Grosz, Volatile Bodies (St. Leonards, NSW: Allen and Unwin, 1994), 7-19.

256 “God made me be born with Aspergers”.

The field of differences Grosz refers to, and ‘difference’ per se as a central concept amongst humans, has traditionally been derived and defined by dualisms such as male/female, white/black, political/personal, public/private, abstract/concrete, or abled/disabled. These dualisms are predicated on relations of hierarchy, domination and exclusion. ‘Different from’ has come to mean ‘less than’, that is, to be worth less than.20 Within the Christian context, being less-than has historically been equated with having a body that is not perfect, that does not conform to the representative God of ‘normality’ as depicted in a male-only transcendent God. As Chopp observes, this needs to be dismantled:

… within Christian symbolic logic, the body is often explicitly denied in importance, and then implicitly constructed through the necessity of only ‘perfect’ bodies representing and approaching God.21

This relationship between perfect bodies and approach to God is defined by notions of the ‘spoiled body’, or stigma. Erving Goffmann’s classic writings on this topic defines stigma as “an undesired differentness from what we had anticipated.”22 Goffmann identifies three types of stigmatization: physical, moral and behavioural, which often overlap with differences of race, religion and nation.23 Any dominant group in society, and clearly faith communities are one such, has the means to control which differences are perceived as deviant and those which are not. Certain bodies, by way of appearance or behaviour are devalued by projection of stigma on to them. Rosemarie Garland-Thomson writes that stigmatisation:

… not only reflects tastes and opinions of the dominant group, it reinforces that group’s idealised self-description as neutral, normal, legitimate, and identifiable by denigrating the characteristics of less powerful groups or those considered alien.24

20 Rosi Braidotti, Nomadic Subjects (New York: Columbia University Press, 1994), 9. 21 Rebecca S. Chopp, foreword to The Disabled God by Nancy Eiesland (Nashville: Abingdon Press, 1994), 9. 22 Erving Goffmann, Stigma: Notes on the Management of Spoiled Identity (New York: Simon and Schuster, 1963), 5. 23 Goffmann, Stigma, 4. 24 Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), 31.

257 Such devaluation of undesired characteristics uses stigma to perpetuate a cult of normalcy which repudiates persons lacking in body capital and highlights blemished features unworthy of social inclusion.25 As someone stigmatised by difference and labels Bill is certain that he is no aberration in God’s creation of human beings.

“ … The human body … that’s just one example of it … it’s just so complex and well designed.”

Bill is an excellent dialogue partner with Thomas Reynolds:

… the experience of disability … names possibilities for “staring back” at stigmatizing gazes, prophetically exposing the pretentiousness of the sovereign claim to control, to be invulnerable and without limits. And it points to possibilities for living beyond normalcy, opening space for inhabiting alternative embodiments of human life as valuable and creative.26

How might faith communities, seeking to engage in friendship with devalued people, understand and critique, or dismantle this cult of normalcy, and thereby mitigate its negative influence?

9.4.2 Cult of normalcy and otherness

In his analysis of the pernicious cult of normalcy, Walter Wink cites its three sources as Hebraic cultic thought, Greek aesthetic norms and the values of the Enlightenment.27 This discussion addresses Hebraic sacrificial practice. Both the gift offered to God and the priest who makes the offering must be “without blemish”. The priest must be representative of the people and in Leviticus 21:16 – 24 a long list of human characteristics excluded the priest from offering sacrificial gifts. The maimed, diseased and deformed were excluded in a long list of characteristics exemplifying deviation from a norm.28 It is not too far a stretch to suggest that in Hebraic thought all people bearing such features were also considered abnormal and outside what was

25 Reynolds, Vulnerable Communion, 63. 26 Thomas Reynolds, “Protestant Christianity and Disability,” in Disability and World Religions: An Introduction, eds. Darla Y. Schumm and Michael Stoltzfus (Waco, Texas: Baylor University Press, 2016), 163. 27 Walter Wink, “Holy and Without Blemish Before God: Disability and Normalcy,” Auburn Views 1, no. 1 (Spring 1993): 2. 28 Wink, “Holy and Without Blemish Before God,” 2.

258 considered acceptable in God’s eyes and could not be allowed to contaminate the Temple.

Christian communities must come to terms with how significant this perspective has been in contributing to people’s alienation, both religiously and socially. Jesus however, sought to diminish and dismantle holiness as separation, instead offering an economy of mercy extending especially to outsiders. By abrogating the laws of purity, defilement and blemish, Jesus announced a new image of God:

… God’s holiness cannot be sullied; it is a cleansing and healing agent. It did not need to be shut up and quarantined in the Temple; it was now, through his healings and fellowship with the despised and rejected, breaking out in to the world to transform it.29

Calling for an end to structures and attitudes that are exclusionary, the image of the Accessible God therefore (2.3.5.1):

… demands we search our community with truth and face the serious reality that some of the people of God have been systematically denied access to the community … that we admit that our own attitudes and actions have excluded people. It forces us to ask difficult questions. How can we become more inclusive? What actions do we need to take? What skills do we need? How must we change to make this gospel demand a reality in our communities? 30

Relevant to this research, and inspired by agape, Jesus directs his followers to go out of their way in friendship to dismantle the barriers that have previously excluded people labelled by blemish, abnormality or disability. Peter offers verbal snapshots that capture the importance of diversity and difference:

“… you want … different people … learn something … that kind of question … .got to listen to your friends … that sort of questions you don’t want … ”

Fear is projected on to the ‘other’ by the cult of normalcy. Otherness is perceived as not conforming to values affirmed by the majority and is defined by a lack in worth, or of exchange value such as beauty, efficiency or productivity.31 Similarly, Vanier seeks

29 Wink, “Holy and Without Blemish Before God,” 4. 30 Block, Copious Hosting, 122-123. 31 Reynolds, Vulnerable Communion, 60.

259 to dismantle the tendency to see the world in terms of self over and against the other. He challenges a world in which self-mastery and domination take precedence in the organisation of human relationships claiming that the gospel message turns this world view upside-down. The image of Jesus washing his disciples’ feet reveals a self- emptying act which prefigured friendship:

Peter cannot understand the meaning of this gesture. He needs Jesus above him, not below him. Jesus gives him security … But Jesus wants to enter into a new relationship with Peter, to call him to rise up and discover that he is called to love as Jesus loves him.32

9.4.3 Healing and wholeness

People with disability often find themselves judged or excluded from faith communities because they are ‘not whole’ and therefore not ‘holy’ enough to be present in worship.33 From where are such attitudes derived? Might Jesus’ miraculous healings, which include consideration of the cause-and-effect relationship of sin and disability, contribute unwittingly to this? Schumm refers to the implication that “bodies that are disabled must be made physically “whole” before those who inhabit them can be spiritually whole?”34

Moving from codes of purity to any emphasis on dominant and disabling theologies which equate disabilities with sin, Chopp suggests that:

… as if to ensure the quest for purity, physical afflictions become elevated to virtuous suffering when, and only when, they can be spoken of as trials of obedience. Such teachings allow either one of two options for those with disabilities: either miraculous healing or heroic suffering. 35

In the pursuit of friendship, is emphasis by faith communities on either of these options acceptable or helpful? I believe not. The active pursuit of unfulfilled miraculous healing, or exorcism of evil spirits, has left many a person with feelings of guilt and failure, whilst heroic suffering is likely to cast people as victims with diminished person-hood.

32 Jean Vanier, Drawn into the Mystery of Jesus through the Gospel of John (London: Darton, Longman and Todd, 2004), 227. 33 Black, A Healing Homiletic, 14. 34 Darla Schumm, “Holy Access,” Tikkun 29, no. 4 (Fall: 2014): 25. 35 Chopp, The Disabled God, 11.

260 In calling for a dismantling of the nexus between disabilities, sin and healing, Elizabeth Hastings, somewhat ironically, captures the sentiment of the negative impact this has had on many people’s relationship with the Church:

With all the respect due to the ten lepers, the various possessed, and the sundry blind, lame and deaf faithful of scripture, I reckon36 people who have disabilities may have been better off for the last two thousand years if our Lord had not created quite so many miraculous cures but occasionally said, “your life is perfect as it is given to you – go ye and find its purpose and meaning … ” 37

Rachel, resuscitated at birth, spoke of appreciation for her life as it is:

“… at least I’m alive even though I have a disability … I didn’t die … I’d rather have the oxygen mask and they held the baby.”

Edmonds provides a vital critique of contemporary efforts to remove ‘disability’ by the increasing use of genetic ‘therapy’ and manipulation, and the global rise of faith healing, both of which arise from and perpetuate the ‘broken’ language of disability. This language is premised on people being objectified by dehumanising and generalised labelling which seeks to correct and eliminate the diversity of bodily and behavioural difference. He postulates a new direction firmly premised in the Christian belief that the value of any person commences in the grace of Christ: a ‘graceful life’. Such a life is exemplified in communities of friendship like those of L’Arche and serves as a prophetic antidote to the narrow vision of genetic reductionism and the misplaced practice of faith healing.38

A significant manifestation of the cause and effect relationship of disability and sin is the use of certain clichés that perpetuate the sense of not being ‘whole’ or holy enough to be present in faith communities. Fullwood and Cronin name such “God is on your side” clichés: God has chosen this for you; it’s a test of your faith; these things are

36 Australian vernacular for ‘think’. 37 Elizabeth Hastings, “A Thousand Tongues to Sing: Difference and Belonging,” (paper presented at Beyond the Ramp Conference, 7-10 May, Adelaide, 1998). 38 Matt Edmonds, A Theological Diagnosis: A New Direction on Genetic Therapy, ‘Disability’ and the Ethics of Healing (London and Philadelphia: Jessica Kingsley Publishers, 2011).

261 meant to be; we all have our crosses to carry.39 As the parent of a daughter with profound intellectual disability, Palmer objects to such clichés as ‘pious utterances’:

… all too often the pronouncer has not done the hard work of wrestling with the profound theological issues that arise when we attempt to give an account of the human reality of disability, nor have they entered into the pain and grief experienced by those who live with disability or share life with those who do.40

Such clichés need to be critiqued, dismantled and removed from the pastoral vocabulary of Christian faith communities. Calder asserts:

That they are trite and superficial despite their good intent because the recipient is cast as a person whose faith is perhaps suspect and who has incurred God’s wrath for some misdeed. They are a distancing device. How does one respond to such prescriptive and categorical assertions in the midst of shame, grief or trauma, especially when God is invoked in such definitive terms? 41

9.4.4 Independence and vulnerability

The notion of independence, in the context of relationship development and friendship, also needs to be critiqued and dismantled. Whilst the values of autonomy and self- determination have underpinned the agenda of the disability rights movement, how does independence help or hinder the response by faith communities?

Reinders does not believe that the language of rights alone will create more opportunities for human interactions from which friendships may emerge:

… rights cannot open up spaces of intimacy, which are the kinds of spaces where humans have their need of belonging fulfilled. Put simply, disability rights are not going to make me your friend.42

39 Deborah Fullwood and David Cronin, Facing the Crowd: Managing Other People’s Insensitivities to your Disabled Child (Melbourne: Royal Victorian Institute for the Blind, 1986), 90-93. 40 Damian J. Palmer, “Disability: Consider the Crepe Myrtle,” in Speaking Differently: Essays in Theological Anthropology, eds. Phillip Holliday and Heather Thomson (Canberra: Barton Books, 2013), 101-102. 41 Andy S. Calder, “God Has Chosen This for You” – “Really?” A Pastoral and Theological Appraisal of This and Some Other Well-Known Clichés Used in Australia to Support People with Disabilities,” in Voices in Disability and Spirituality from the Land Down Under: Outback to Outfront, eds. Christopher Newell and Andy Calder (New York: Haworth Press, 2004), 6-7. 42 Reinders, Receiving the Gift of Friendship, 41-43.

262 Fundamental to friendship formation is the need for a moral culture in which questions about what makes our lives worth living, our ‘quality of life’, are considered. Few people believe that spending time with people with intellectual disability will contribute to the quality of their own lives.43 Reinders is clearly suggesting that the extolling of independence needs dismantling if it dismisses the human need for dependence and vulnerability within relationships. He suggests that a different moral culture is required for friendship formation with adults with intellectual disability. This was echoed by two interviewees:

“You look out for each other … what you are up to … what you are doing … every each day you got to help each other … you can do, you don’t know, you know … ” (Peter)

“I know I’m not by myself. Part of the world … like we are all part of it.” (Cameron)

If a different kind of moral culture is needed within faith communities, how is that to be envisaged? Jean Vanier believes that “we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.”44 The recognition of our dependence is key to our independence in relationships:

Our self-knowledge too depends in key part upon what we learn about ourselves from others, and more than this, upon a confirmation of our own judgements about ourselves by others who know us well, a confirmation that only such others can provide.45

In section 2.3.5.2 one of the three defining images from the literature in the field of spirituality and disability is the Interdependent God. Relationships that affirm and extol the interconnectedness of dependence and independence are constitutive of Christian communities as places “where people can be accepted for who they are as children of God, the place where dependency is acknowledged and interdependency is valued.”46

43 Reinders, Receiving the Gift of Friendship, 7. 44 Jean Vanier, Becoming Human (London: Darton, Longman and Todd, 1999), 41. 45 Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues (Chicago: Open Court, 1999), 94. 46 Black, A Healing Homiletic, 41-42.

263 9.4.5 Fear of the stranger – xenophobia

If friendship with people labelled by intellectual disability is to be fostered and celebrated, the final key precondition to be addressed and dismantled is fear of the stranger, or of the ‘other’. Otherness is created by the tendency to make issues and questions into an ‘us - them’ polarity. The polarity ‘disabled – normal/typical’ is a denial of the ways in which we are all limited and vulnerable and a denial of the differences that already exist between people. Recognition of the need to subvert the ‘us - them’ polarity underpinned the 1981 campaign and slogan ‘Break Down the Barriers’.47 Such a polarity is represented by Peter when subjected to bullying:

“It hurts me … when you get sweared at … f’d at … you know – it’s out there outside the building not in here it’s not everywhere you just have to keep your opinions to yourself … you know … just got to have that sort of … like, the meaning … what some people can do … you get bullied at … yeah, want to be treated better.”

Xenophobia assigns the label of stranger which engenders uncertainty, hesitation and fear of difference. In the biblical witness the stranger is a moral category, included in the same category in Israel as the widow, the orphan and the poor.48 Israel’s commitment to embrace such a person or group recalls its own past in Egypt, the very “paradigm of inhospitality for Israel, the definitive story of how not to treat the stranger”.49 The New Testament continues this tradition because in the welcome of the stranger the risen Christ becomes manifest (Luke Chapter 24). In Jesus’ encounters with those who were socially and religiously other to him or stigmatized and demonised as people to be feared, Jesus repositioned the margins of who knew God, and in friendship offered the means to overcome fear. In dismantling fear, Swinton challenges church communities: “Are we sitting where God is sitting?” 50

47 1981 was International Year of Disabled Persons (IYDP) and initiated significant legislative change, awareness and education about the rights and needs of people with disabilities. 48 Patrick D. Miller, “Israel as Host to Strangers,” in Today’s Immigrants and Refugees: A Christian Understanding (Washington, D.C.: United States Catholic Conference, Inc., 1988), 1-19. 49 Miller, “Israel as Host to Strangers,” 15. 50 John Swinton, Raging with Compassion: Pastoral Responses to the Problem of Evil (Grand Rapids, Michigan: W.B. Eerdmans, 2007), 221.

264 Scriptural references to finding divine blessing in the face of the stranger abound (Deuteronomy 14: 28-29; Matthew 25:45; Hebrews 13:2). If the church dismantles its fear of the stranger in the move to filoxenia, or love of stranger, and sits where God is sitting, Rabbi Jonathan Sacks states that since “God creates difference; therefore it is in one–who-is-different that we meet God.” 51

Involvement in the music team at his church is a positive experience but Bill is aware that fear of the stranger still looms large in many faith communities:

“… in other churches people with a disability would not be given that sort of opportunity. Or in fact they could end up being discriminated against.”

In conclusion, the five key factors discussed above are preconditions which significantly contribute to alienation of adults with intellectual disability within Christian faith communities. This cohort of interviewees has claimed that connectivity and friendship are the primary determinants of their spirituality. In listening to these voices, how might a new orientation be imagined and hoped for, one which is defined by understandings and responses which give pre-eminence to friendship with God and others as a move towards ‘life in its fullest’? The next Section will use Brueggemann’s second functional qualifier, energising, to discuss five pre-conditions and actions required for this new orientation.

9.5 ENERGISING issues

9.5.1 Trinitarian anthropology

In seeking a normative anthropology for relationships and friendship with people with intellectual disability, based on interdependence, it is important to trace the origins of this image of the autonomous individual. Herman Meininger describes the concept of autonomy as:

… the means to and the ultimate aim and ideal of human development away from dependence into independence. Its project is emancipation and escape from tutelage and unwanted interference by all others … In

51 Jonathan Sacks, The Dignity of Difference: How to Avoid the Clash of Civilizations (New York: Palgrave Macmillan, 2002), 59.

265 this frame of reference the fellow human being is emphatically seen as a potential opponent of one’s own process of self-realization. The other person represents the danger of heteronomy and of violation of territory.52

Meininger notes this ‘first person point of view’ originates with Augustine. He suggests Augustine understood the Trinity as an internal relationship between the Divine self and itself where this self-relationship within the Trinity was “reflected and represented in the rational and reflective capacities of the human soul. Put briefly Augustine describes man (sic) as a substance that is enclosed in itself.”53

Jürgen Moltmann’s ‘social Trinitarian doctrine’ on the other hand critiques Augustine’s focus on internal relationships and the ‘monarchical’ structure of these relationships which he described as the ‘anthropology of dominion’:

For Moltmann, being human means living in a relationship which stands open to the eschatological destination of man (sic). Rather than individual autonomy, “sociality” (community in the same space and time) and “generativity” (community of generations through time) are keywords in his description of being human.54

Zizioulas also does not consider the personal being of God and man (sic) as a static and enclosed entity. It is both ekstasis which aims at affirmation of the other, and hypostasis in that the move towards community is both unique and unrepeatable. He affirms the Trinity as a community in which one person is constituted by the other, and as humans created in the image of God:

… being human exists in the form of a community in which persons receive from each other their unique identities, each from the hand of the other. Human persons do not exist in what they are for each other, not in their intellectual capacities or influencing powers, but in who they are for each other.55

52 Herman P. Meininger, “Authenticity in Community: Theory and Practice of an Inclusive Anthropology in Care for Persons with Intellectual Disabilities,” in Spirituality and Intellectual Disability: International Perspectives on the Effect of Culture and Religion on Healing Body, Mind, and Soul, eds. William C. Gaventa and David L. Coulter (New York: Haworth, 2001), 17. 53 Meininger, “Authenticity in Community,” 18-19. 54 Meininger, “Authenticity in Community,” 19. 55 John D. Zizioulas, “Human Capacity and Human Incapacity: A Theological Exploration of Personhood,” Scottish Journal of Theology 28, (1975), 408.

266 This form of fellowship (koinonia) points to human friendship as a reflection of the relationships of the Trinity, with friendship being at the heart of both Christian life and theology.56 Reinders’ notion of ‘receiving the gift of friendship’ reflects the above- named ekstasis and is grounded in the following Trinitarian position:

The notion of being human does not spring from an act of self-affirmation … Theologically speaking, we are truly human because we are drawn into communion with God the Father, the Son and the Holy Spirit … my being as imago dei is not to be taken ontologically as a subsistent entity, but as a relationship that is ecstatically grounded in God’s loving kindness towards me.57

An inclusive anthropology therefore has a close connection between our image of the other and of our own self-image and “the question ‘who is the other?’ immediately leads to the question ‘who am I?’ and answers to these questions always are interdependent.”58 Stephanie captured this sense of interdependence when she said:

“I believe that God does the right thing by all. He can do the right thing … by us. I believe that God is a human being.”

Such an inclusive anthropology means that relationships with people with intellectual disability do not depend on the presence or absence of any attributes. Rather, they are oriented towards the authenticity of the other; aiming at a relationship in which the who precedes the what, and the intimacy or relational community emerges:

… sometimes when I go to a Church service … with some friends of mine … go to Church and play some music and we talked to God and He heard us.” (George)

An inclusive and relational anthropology, grounded in Trinitarian theology, provides the energising impetus and imperative from which Christian faith communities can develop a response of friendship with adults with intellectual disability. Such a response of love, impelled by agape, is affirmed and unapologetically asserted by Josef Pieper in the following words:

56 Brian Edgar, God is Friendship: A Theology of Spirituality, Community and Society (Kentucky: SeedBed Publishing, 2013), 127. 57 Reinders, Receiving the Gift of Friendship, 274. 58 Meininger, “Authenticity in Community,” 23-24.

267 In every conceivable case love … is a way of turning to him or it and saying: “It’s good that you exist; it’s good that you are in this world!” Human love, therefore, is by its nature and must inevitably be always an imitation and a kind of repetition of this perfected and … creative love of God.59

9.5.2 Interdependence and vulnerability

How to deepen an understanding of this creative and energising love of God? If Pieper is correct, in the human imitation of this divine love are there certain ingredients needed for such relational wholeness, ingredients which underpin and are vital for the new orientation of friendship to be enacted with adults with intellectual disability? Reynolds, Moltmann and Vanier all focus on the essential issue of vulnerability and offer a trilogy of resonance with the research findings. Chapter 2.3.6 outlined two additional images found in the literature of disability theology, namely God as limited and vulnerable.60 Moltmann affirms the importance and centrality of vulnerability because a “person with disabilities gives others the precious insight into the woundedness and weakness of human life.”61 Reynolds, reflecting on his role as parent to a child labelled with multiple diagnoses, believes that in accepting his own vulnerability and limitations, he has grown to release his need for control and to move beyond his fears:

… attending to another such that we become vulnerable with that particular and concrete other, up close; and love includes receiving from the other … Vulnerability is a positive feature of every human life, a life that becomes its own through dependency upon others in relationships of belonging.62

Drawing links between disability and weakness holds the danger of trivialising disability as an instructive tool, such that people with disability are reduced to a moral lesson for non-disabled people, rather than privileging disability as a measure of personhood. The lesson that Reynolds seeks to share is that in learning to embrace

59 Gilbert Meilaender, “Learning from Pieper: On Being Lutheran in This Time and Place,” Concordia Theological Quarterly 63, no. 1 (1999): 37-49. 60 Swinton, “Who is the God we Worship?” 281-297. 61 Jürgen Moltmann, “Liberate Yourselves by Accepting One Another,” in Human Disability and Service of God, eds. Nancy L. Eiseland and Don Saliers (Nashville: Abingdon, 1998), 121. 62 Reynolds, Vulnerable Communion, 117-118.

268 ourselves and others as we are, in our specific weaknesses, people are freed from narcissistic self-enclosure and empowered to risk the openness of genuine relationship. For Reynolds this is the beginning of a moral conversion where disability is part of the fragile character of human existence where genuine relationships of mutual vulnerability can flourish.63

Igor alluded to this sense of mutual vulnerability as he reflected on when things are tough in a special relationship.

“Feels like sticking together, like makes me feel settled, makes me feel like something in my system and makes me feel like hey Bob wants to do this or Bob wants to do that or Bob want to do such and such that’s how people getting along to me …”

Perhaps more than anyone else, Vanier has been cited, or explored interdependence and vulnerability, particularly with disability as a key characteristic. The metaphor of a ladder is commonly found in his writings, and he uses it as a pointer to the deeper purposes of being human: of befriending. At a retreat for L’Arche assistants Vanier outlined this ladder metaphor:

The vision of God is to go down the social ladder to take the lowest place in order to be with the weak and the broken. Then God rises up with them to build a new community which does not forget or exclude anyone … Jesus tells us: … ‘Stop associating only with people like yourself. Accept differences. Go down the ladder. Become a friend of the weak and the broken, and a friend of God.64

Vanier clearly associates friendship with the God of Jesus Christ with mutual vulnerability. Peter Comensoli writes that Vanier uses this ladder metaphor to illustrate the power of self-emptying, that is, giving up what one clings to in order to be relationally with people who are similarly self-emptied.65

This is a vital and energising precursor to forming friendship with adults with intellectual disability. But it is not an easy one to enact. Vanier points to Jesus’ action of going down on his knees to wash the feet of his disciples (John’s

63 Reynolds, Vulnerable Communion, 117-118. 64 Jean Vanier, Befriending the stranger (London: Darton, Longman and Todd, 2005), 41. 65 Peter A. Comensoli, “Descending the Ladder: The Theological Anthropology of Jean Vanier’s Key Metaphor,” Journal of Religion, Disability and Health 15, no. 2 (2011): 7.

269 gospel, Chapter 13), an action of self-emptying (kenosis) which he hoped would be the trigger for friendship. Why does Peter initially refuse Jesus’ offer? Previous discussion noted Vanier’s project to dismantle the tendency to see the world in terms of self over against the other, where self-mastery and domination take precedence.66 Perhaps this is what Peter was reacting against. The image of Jesus washing his disciples’ feet reveals a self-emptying act which prefigured friendship, a radical move from servant to friend where the sacrifice of one’s life is the highest form of love, an energising action which manifests itself as friendship.

No one has greater love than this, to lay down one’s life for one’s friends. You are my friends if you do what I command you. I do not call you servants any longer, because the servant does not know what the master is doing; but I have called you friends (John 15:13-15 NRSV).

9.5.3 Servanthood and friendship

The switch from servant to friend is significant for the relationship between Jesus and the disciples. Moltmann believes that in the fellowship of Jesus they now experience him in his innermost nature as Friend. Open friendship becomes the bond in their fellowship and, most significantly, becomes their vocation in a society still dominated by relationships of masters and servants.67

Our society has evolved into a nation underpinned by service, where servants are major contributors to the Gross Domestic Product (GDP). We have become an economy of servants. As a nation we could perhaps celebrate the institutionalisation of the good servant! Faith communities and their missional endeavours are also embedded in this structure. Would Christ, who chose to reverse accepted values, have rejected such a society of good servants? He might if he saw good servants becoming lords of commercialised systems of service delivery be it in Education or Aged Care. Can we develop an alternative metaphor?

Friends are people who understand that it may not be the servants — lawyers, social workers, clergy, teachers, doctors — who are most expressive of God’s world. Rather,

66 Vanier, Drawn into the Mystery of Jesus, 227. 67 Moltmann, The Open Church, 57.

270 friends are people who understand that it is through their mutual action and enjoyment of each other’s company that Christ’s call for equality is realised.68 Why friends rather than servants? It is possible for a servant to abuse power over those entrusted to their care. However friends do not need the call to turn values upside-down because they are free to give and receive help and are liberated by the possibilities of knowing how to be mutually supportive. It is contended that this shift from being servant to friend is another vital ingredient for faith communities in adopting a new orientation of friendship with adults with intellectual disability. In shifting the emphasis from service to friendship, Jesus was pointing to a different relational dynamic, an energising and prophetic way in which faith communities can imagine and experience the world. Christ’s backwards model of service seeks an equality based on the mutuality of friendship that George knows very well.

“Well … well … if my friends need help … we are there to help each other … and … to help other friends as well …”

From a feminist perspective, Susan Dunfee asserts that servant-hood can create a dependency between a woman and those she serves, and that friendship offers a new model for calling women to wholeness and freedom. This power imbalance of being recipients rather than contributors, thus compromising interdependence, also resonates with adults with intellectual disability. For Dunfee, friendship with its love and freedom creates solidarity among people that in turn promotes and sustains personhood because “friends love their friends into freedom and as a community of friends … seek not to serve but to befriend the world.”69

Such friendship is only possible when people have dismantled their fear of the stranger, of the other, as discussed earlier. This friendship is powerfully formed by love of the stranger. This is what is needed by faith communities in their move to an unconditional welcoming embrace of adults with intellectual disability.

68 Acknowledgment to John McKnight, “On the Backwardness of Prophets.” Source of article unknown. 69 Susan N. Dunfee, Beyond Servanthood: Christianity and the Liberation of Women (Lanham: University Press of America. 1989), 144-157.

271 9.5.4 Love of the stranger – filoxenia

A Greek term meaning love of the stranger, filoxenia echoes the ancient Hebrew tradition of welcoming the stranger, or sojourner. In ancient Greek society, the stranger, however odd they appear to be, might be one of the gods rather than a fellow human or downtrodden enemy.70 For Palmer such welcome means letting the stranger find a sanctuary of warmth, trust and goodwill while “letting the stranger remain a stranger while offering acceptance nonetheless.”71 The stranger’s integrity and difference need to be respected and kept intact, just as when the Israelites were exhorted by God not to oppress or harm the stranger. Having been aliens themselves in a strange land and exiled from their spiritual home, the memory for the covenanted people is that they were outsiders, vulnerable sojourners with God, who were provided for and loved by God. In this lies the imperative to love others. By the power of God’s Spirit xenophobia turns into philoxenia and fear of the stranger becomes love of the stranger. In asserting that what is at stake is far more than superficial civility or niceness, Reynolds concludes this argument by claiming that “justice requires an economy of compassionate reciprocity that welcomes the vulnerable stranger.”72 He notes that all human beings can become vulnerable strangers at any time. In the stranger’s dependence and lacking the ability to reciprocate in kind we can each recognize the stranger in ourselves. Hospitality also evolves from the acknowledgement of being graced, of having received something to offer. A host can and should give because she or he has first received.73 It is this vulnerability which provides the theological root of hospitality.

In this discovery of God through role reversal, as well as meaning ‘stranger’, the word xenos also means both ‘guest’ and ‘host’.74 This is a most important observation for Christian faith communities who witness in the life of Jesus occasions when he

70 Lorna Hallahan, “On Relationships Not Things: Exploring Disability and Spirituality,” in Ageing, Disability and Spirituality, ed. Elizabeth MacKinlay (London: Jessica Kingsley Publishers, 2008), 101-102. 71 Parker J. Palmer, The Company of Strangers: Christians and the Renewal of America’s Public Life (New York: Crossroad, 1981), 67-68. 72 Reynolds, Vulnerable Communion, 242. 73 Reynolds, Vulnerable Communion, 242. 74 Ana Maria Pineda, “Hospitality,” in Practising our Faith, ed. Dorothy C. Bass (San Francisco: Jossey Bass, 1997), 33.

272 variously hosted strangers, was sometimes the guest and sometimes the stranger. Host and guest, befriender and befriended appear to be inextricably intertwined within the life of Jesus.75

God blesses through the stranger. How so? In hospitality the centre of gravity lies neither in the home nor in the stranger, neither in host nor guest, but in the God of both who is discovered redemptively in the meeting – indeed in the role reversal.76

As noted in discussion of Gaventa’s ‘gift and call’ schema, such hospitality-in- friendship is inspired by God’s universal love, agape, and enacted within particular communities with strangers. It is identity in Christ that leads faith communities to respond in hospitality and friendship. In response to the question about the importance of friends, Bill, who has been welcomed into his faith community, expresses this dimension of friendship:

“Absolutely. Having decent friends it is just so important.” “Well that makes life just that little extra worthwhile. Otherwise without friends, that’s not living it’s mere existence. And not a very nice one. I’ve been there too …”

It is clear from Bill’s statement that his quality of life, in relationship and friendships in his faith community means so much to him. He refers to times when he has not had friends, and he clearly knows the difference it makes. Remembering he spoke of involvement in the music group at his church, his emphatic words speak of a flourishing in community, an embrace with people he both contributes to and receives much from:

“It’s enough to feel like family which is a good thing … in other churches people with a disability would not be given that sort of opportunity.”

The final sub-section of this Energising Section will focus on the concept of embrace, in both its actions and its outcome of faith communities enriched by interdependent relationships that previously may have not been considered possible. What is needed on the part of the guest and of the host to bring this new orientation of friendship with adults with intellectual disability to fruition?

75 Swinton, Raging with Compassion, 238. 76 Reynolds, Vulnerable Communion, 243.

273 9.5.5 Embrace of friendship

Identification with our shared humanity is the first and essential step in the mutual embrace between adults with intellectual disability and others. The term ‘embrace’ underlines the importance of the guest and host finding space in which friendship might be encouraged and flourish. In his exploration of the polarities of exclusion and embrace, Miroslav Volf writes:

… the will to give ourselves to others and to “welcome” them, to readjust our identities to make space for them, is prior to any judgement about others, except that of identifying them in their humanity.77

Recalling Gaventa’s schema of ‘gift and call’, once the gift of shared humanity is recognized in both guest and host, as discussed in the previous subsections, what might the call be? What response allows each to keep their own, unique journey whilst also seeing themselves from the perspective of the other? What enables people to step out of their own history, their uncertainties, anxieties and fears of the other?

Volf says for embrace to have a chance people are called to have ‘the will to embrace’. I am called not to embrace my enemy, the other, the stranger but to have the will to do so. Truth and justice are not possible without the will to embrace; but the embrace cannot happen until truth is said and justice is done. A genuine embrace may not be possible until critical issues of truth and justice are done. The second step in the drama of embrace requires a willingness to step back, give space to the other. Repentance and forgiveness are the spiritual dramas that allow each of us to open the boundaries that define and protect us and give space to the possibility of embrace and reconciliation.78

Reinders’ provides the Christian theological-ethical argument for friendship being the means to this embrace of a good human life. Unconditional acceptance of self and the person with intellectual disability is only possible when understood as God’s actions being a loving self-gift. Friendship understood in this way requires a bi-directional movement: it can only be given after it is received, and only be received after it has

77 Miroslav Volf, Exclusion and Embrace: A Theological Exploration of Identity, Otherness and Reconciliation (Nashville: Abingdon Press, 1996), 29. 78 Volf, Exclusion and Embrace, 99-163.

274 been given.79 In a very real sense Reinders challenges the reader to ask questions of their own life and self, and what that means for friendship with people with intellectual disability. Understanding what it means to lead a human life comes to us in choosing the other person unconditionally as a friend, thus providing an answer to the question of who I am for myself.80 The essence of his argument is captured in the following:

The notion of being human does not spring from an act of self- affirmation: this is as true of my being as it is of yours—or Kelly’s (a person with profound disability). Theologically speaking, we are truly human because we are drawn into communion with God the Father, the Son and the Holy Spirit … my being as imago Dei is not to be taken ontologically as a subsistent entity, but as a relationship that is ecstatically grounded in God’s loving kindness towards me.81

Paul speaks of this love of God as mirroring his friendship with God in the relationship he has with God’s ordained representative and his faith community:

“God is kind. To me. I love going to Church it’s my favourite thing to do and the priest he always comes up and has a chat with me and goes. That’s why. He loves me so much.”

Hallahan’s exploration of the concept of communio, ‘loving, moral journeying’, posed the question: “How do relationships become transformational for all of us?” Describing the work of embrace and the qualities of people who can be mobilized to bridge differences she wrote:

We are inviting people into the lives of stigmatized people who are considered burdensome, disturbing, frightening, incapable of mutuality, demanding, or just plain unworthy and less than human … So the question remains, is there any way into people’s hearts?82

This is a profound question which reflects the heart of this research project which sought a deeper understanding and knowledge of how people with intellectual disability experience their spirituality. At its heart has been their desire for connectedness, as discerned in the two superordinate themes and exemplified in relationships of friendship. The L’Arche communities have revealed people’s search for love and

79 Reinders, Receiving the Gift of Friendship, 279-283. 80 Reinders, Receiving the Gift of Friendship, 150. 81 Reinders, Receiving the Gift of Friendship, 274-75. 82 Hallahan, “Believe That a Farther Shore Is Reachable from Here,” 33-44.

275 presence, knowing Jesus as friend and being open to human friendship in a way that confounds the wisdom of the world with what the world considers as foolishness. Michael Downey touches on Vanier’s anthropology of the heart:

Deep communion with God does not take place at the level of reason or intellect. Rather, as the tradition of the mystics reminds us, union with God occurs at the fundamental base and core of existence: the heart.83

Relationships that aspire to friendship within Christian faith communities are always inspired first and foremost by agape, the universal and unconditional love revealed in the life of Jesus. By acknowledging Tillich’s pre-eminence of agape as the manifestation of the divine Spirit,84 and in recognizing the gift of such love from God, we see that God’s embrace calls faith communities to offer an embrace of relational wholeness constituted by grace. In keeping with the research’s motif of ‘prophetic imagination’ and the artistic root metaphor, Anna Katherine Shurley reminds us that the Church is called to celebrate diversity and “needs dreamers of all abilities to carry its witness to the world. By God’s grace, may it always endeavour to welcome the dreamers with gladness and call them friends.” 85

As depicted in Kellenberger’s image and evidenced by the narratives of the 14 co- researchers, there is a clear plea for a connectedness with God and fellow humans, manifested in friendship which provides meaning, purpose and hope for an enhanced quality of life.86

9.6 Conclusion

This discussion has reflected Swinton’s earlier observation that there are two movements within the literature of spirituality and disability. Participant responses to questions about their lived experience and understanding of spirituality have prompted and shaped the need for a new orientation. Within this context, the gift of God’s

83 Michael Downey, Blessed Weakness: The Spirit of Jean Vanier and L’Arche (San Francisco: Harper and Row, 1986), 70. 84 Tillich, Love, Power, and Justice. 85 Anna Katherine E. Shurley, Pastoral care and intellectual disability: a person-centred approach (Waco, Texas: Baylor University Press, 2017), 105. 86 Kellenberger, “Biblical Exegesis,” 423-424.

276 friendship as revealed within doctrine and tradition has been clarified and revivified through interaction with the experience of disability.

This chapter has sought to honour the co-researchers’ desire for enhanced connectivity with God and others. Many of the 14 interviewees have had or continue to have some involvement with Christian faith communities, and some expressed a wish to have more friends within such contexts.

It is to be hoped that friendships of mutuality and reciprocity based on philos that goes beyond superficial encounters will increasingly emerge in Christian faith communities. Unity and reconciliation, expressed as friendship, with adults with intellectual disability will be experienced when, as equal members of the Body of Christ (1 Corinthians 12), their voice is heard and their very presence draws attention to their prophetic qualities for those who have “eyes to see, ears to hear and hearts ready to be transformed”. 87

In undertaking this social action research as a bridge-building practical theologian, a significant outcome within the research process was the development of the two policy statements from VALID and the Faith Communities Council of Victoria Inc. (FCCV). These Statements have become invaluable advocacy tools in traversing the river that flows between the realms of state and faith, between the realms of “in” and “of”.88 Chapter 10 explores the implications for practice that have arisen from these 14 interviews and the subsequent policy statements.89 Questions then and since belong to the field of practical theology and have included: “Is God only to be found in the realm of faith?” “What role does the state have in recognising and encouraging the spirituality of people with intellectual disability?”

87 Amos Yong, Theology and : Reimagining Disability in Late Modernity (Waco, Texas: Baylor University Press, 2007), 221. 88 Schwartz, Crossing the River, x-xi. 89 https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf http://faithvictoria.org.au/news-a-articles/421-statement-concerning-people-with-disability Both accessed 16 February 2018.

277 Chapter 10: Implications for Practice: Spirituality in Disability Services

10.1 Introduction

The previous chapter detailed and confirmed the centrality of friendship for the spirituality of adults with intellectual disability. The discussion focused on Christian communities and the changes required for enhancing the development of friendships. If the people in this study represent many others who reside or participate in government-funded facilities and services then a relevant question emerges: “What role does the state have in recognising and encouraging the spirituality of people with intellectual disability?”

Chapter 1 highlighted my long-term concern about the lack of attention and significance accorded to the importance of spirituality within disability services, particularly in Victoria. Whilst policy and service responsiveness continue to mature in aged care and mental health, the same cannot be said about the disability sector.

This chapter addresses the second research question:

(ii) How can the disability services sector respond? What action is needed?

The discussion takes seriously the thoughts and feelings of the 14 interviewees by including their voices when describing how the spiritual dimension of life is important and needs addressing. In addition to the desire for more friendships, the 22 themes, summarised into 2 superordinate themes, represent a breadth of issues related to spiritual expression.

In asserting his belief that spirituality has been overlooked, Bill’s hope for action and change in policy and service delivery contexts is clear:

“I think a few of these organisations can do more to advocate in this area, to make sure that people with a disability get that side of that particular aspect gets looked after a bit more (sic) … because at the moment there is very little … and it could be a lot better.”

278

The discussion will acknowledge Bill’s hope and plea and trace the plans and struggles that since 2001 have advocated for spirituality to be recognised in government policy and service responses in Victoria. This research has added significantly to such advocacy through the VALID and FCCV policy statements that now embrace spirituality’s importance for people with disability. These Statements have contributed to renewed dialogue opportunities with government and academic personnel and are integral to this chapter’s discussion. The bridge-building role of research and researcher (see 1.6.2) is valuable in making links between the worlds of disability support service systems, both public and private, and faith communities, seemingly on opposite sides of the river and respectively referred to as the “in” and the “of”.1

10.2 Bridge-building between “in” and “of” worlds

As a result of deinstitutionalization, the following questions were posed in Chapter 1. Firstly:

Did government assume people being moved into the community would attend existing faith communities to meet such needs?

If so, based on low participation levels, this does not appear to have been realized. Secondly:

When moving to community participation through small-scale residential facilities, was consideration given by the state government to those in their care regarding spiritual needs? 2

In my opinion, and those of fellow advocates, the state has failed this obligation, a major omission given the inherent potential to enhance the person’s quality of life. This raises issues of neglect and justice and even challenges the identity of what government regards as ethical communities.

Sedgwick (see 4.3.2) proposed that communitarianism, expressed through associations such as family and voluntary groups which promote community connectivity, underpins the role of the state in bringing the individual from dependence

1 Schwartz, Crossing the River, x-xi. 2 Of the three tiers of Australian government, federal, state and local, state governments have responsibility for provision and accreditation of residential services.

279 to supported independence. Will the State of Victoria listen to the hopes and desires of the 14 interviewees so eloquently encapsulated by Bill in the previous section?

Trevor Parmenter also concluded that the equality and value of people with intellectual disability depend upon what he calls an ethical community; that is “one rooted in the philosophy of a mutuality of need, and responsive to the needs of all individuals in our society.”3 The need for such ethical communities applies equally to both sides of the river: to faith communities and the wider society, of which faith communities are part. In traversing the river that flows between the realms of state and faith, the “in” and “of” as described by Schwartz, two questions are triggered:

“Is God only to be found in the realm of faith?”

“Is there a role for faith communities to raise concerns about this issue with government?”

The second question was a key motivator for this research. With a belief in and commitment to the spiritual well-being of people with intellectual disability, advocacy in Victoria has been actively pursued by the Uniting Church, in collaboration with other faith communities and entities, since 2001. Doctoral study, with its social action research focus and practical theological approach, has enabled continuity and consolidation of this advocacy, a purpose and cause echoed by Brueggemann:

Theological cause without social political reality is only of interest to a professional religionist, and social political reality without theological cause need not concern us here. But it is being driven by the one to the other that requires us to speak of and wonder about the call to be prophetic.4

Volf’s discussion of the central Christian tenet of loving God and neighbor as self (Luke 10:27) applies this to the function of faith in human life. He argues persuasively that every prophetic religion, including the Christian faith, has two fundamental movements: the ascent to God to receive the prophetic message, and the return to the

3 Trevor Parmenter, “Intellectual Disabilities – Quo Vadis?” in Handbook of Disability Studies, eds. Gary L. Albrecht, Katherine Seelman and Michael Bury (California, Thousand Oaks: Sage Publications, 2001), 268. 4 Brueggemann, The Prophetic Imagination, 6.

280 world to bring the received message to bear on mundane realties.5 He challenges liberal democracy’s neutrality and dismissal of religious content in public issues:

When religion leaves the public square – or is driven from it – the public square doesn’t remain empty. Instead, it becomes filled with a diffuse phenomenon called secularism.6

For many religious people, being active in public matters is part and parcel of religious commitment and it is a significant detractor when inhibited from living out their lives as part of the faith they embrace. Volf’s exhortation to live in the public square as a religious person is one that this research takes seriously and forms the basis for the actions described in this chapter.

Within the public square of Victorian life, this researcher hopes for recognition of spirituality’s importance for adults with intellectual disability, and by extension, all people with disability. Research collaboration with VALID’s Expert Group, on the “in” side of the river, moved towards this goal by developing their ‘Statement of Spirituality’. This was influential in the subsequent development of FCCV’s ‘Statement about People with Disability’ (see below, 10.5) and helped bridge towards communities which are on Schwartz’s “of” side of the river. The critical importance of friendship in faith communities, the “of” side, was discussed in the previous chapter; the discussion in this chapter will predominantly focus on Schwartz’s “in” side of the river, the response by the disability service sector (advocacy as well as service provision by public and private providers) for the recognition of spirituality.

10.3 Disability rights/friendship and spirituality

Within the disability services sector, Schwartz’s “in” side of the river, friendship is also an elusive goal. Waldron critiques the advocacy movement’s effectiveness in the sphere of interpersonal relationships, and argues that the solution to loneliness will not be found in a rights-based approach to disability:

The difficulty is discovered to be located at the level of anthropology and the understanding in all Western disability policy that human persons are, above all, individual citizens with competing rights to choice, equality

5 Miroslav Volf, A Public Faith: How Followers of Christ Should Serve the Common Good (Grand Rapids: Brazos Press, 2011), 72-73. 6 Volf, A Public Faith, 124.

281 and inclusion. Such a view renders those with and without learning disabilities ‘combatants’ in a legislative arena where the expressed wishes for freely given and received friendship among those who are lonely are frequently ignored in the battle for personal rights.7

Reinders also critiques the disability rights movement. Whilst acknowledging its importance in tackling the social, economic, and political dimensions of exclusion and inequality, he does not believe that the language of rights alone will create more opportunities for human interactions from which friendships may emerge:

… rights cannot open up spaces of intimacy, which are the kinds of spaces where humans have their need of belonging fulfilled. Put simply, disability rights are not going to make me your friend. 8

Fundamental to friendship formation is the need for a moral culture in which questions are posed about what makes our lives worth living. Reinders stakes out an extremely challenging position by claiming that not many people believe spending time with people with intellectual disability will contribute to the quality of their lives.9

I can appreciate that Reinders bases his argument on his development of Christian friendship as the pinnacle of responsiveness, and how important it is that faith communities have a theological understanding and rationale for this. Such energising of friendship was discussed in the previous chapter. However, given an espoused role of bridge-builder and immersion in the advocacy world of disability, I doubt many people in the world of rights would claim that rights alone will make up for friendship. There would be the hope and expectation that, through political and policy change, as people’s communal and social networks increased, including within faith communities, a by-product would be more friendships. Policy change is a necessary corollary but no guarantee that friendship will develop.

Within the realms of public and private service provision, the encouragement of friendship and spirituality for people with disability is not often seen as a priority. One significant factor, it is surmised, is that support staff are neither attuned enough nor encouraged to recognize and/or act on a person’s interest in expressing their

7 Waldron, “‘I came that they may have life’”, iii. 8 Reinders, The Gift of Friendship, 41-43. 9 Reinders, The Gift of Friendship, 7.

282 spirituality. This very issue was the impetus for a research project in inner South Melbourne, which sought to find better ways to meet the faith needs of people with intellectual disability:

This project commenced with a realization. A staff member in an agency working with people with disability in their day activities realized that one participant had identified in her lifestyle planning that she would like to go to church. Not only had she identified it, she had requested this three years in a row. But still, her request remained unsupported.10

If support workers are uncertain or constrained about promoting and sustaining friendship opportunities, including within spiritual contexts, it may in part be explained by inadequate orientation or low expectations of its critical value. Reinders says that support workers and professional caregivers “hardly ever think of their ‘clients’ as friends. They may be very fond of them, they may even say they love them, but only reluctantly is such affection interpreted as friendship.”11

Whilst friendship is so critical for quality of life and spirituality, this research has revealed other important dimensions of people’s spirituality which also need to be addressed and enhanced in the context of both faith communities and public policy/service delivery.

As a reminder, the analysis of the 14 interviews revealed 22 themes across the 10 questions, categorised into 4 major themes:

• Friendship issues

• Relationship issues

• Spiritual/religious participation

• Intra-psychic/existential

The aggregate of time spent per question (Table 2) revealed that 32% of time was spent responding to overt questions about spirituality, religion and God. Conversations

10 ‘Keeping Faith Project’ report, Inclusion Melbourne (2010): 15. 11 Hans S. Reinders, “The Virtue of Writing Appropriately, or Is Stanley Hauerwas Right in Thinking he Should Not Write Anymore on the Mentally Handicapped?” in God, Truth, and Witness: Engaging Stanley, eds. L. Gregory Jones, Reinhard Hütter and C. Rosalee Velloso Ewell (Grand Rapids: Brazos Press, 2005), 54.

283 about value, meaning, hope and existential matters were significant and included issues such as:

• The experience of grief and loss linked to a transcendent awareness:

“Up there yes it is. That’s where my aunty is. And I feel a bit sad for that.” (Louise)

• Prayer and intimate sustaining:

“God’s your friend … you can talk to Him any time you want. Which is good then you sort of … like you can talk to a person who you can see.” (Bill)

• Liturgical participation with positive sense-awareness:

“Love the taste and the wafer melts with the wine.” (Louise)

• Relationship with the natural environment as covenantal immersion:

“Oh I love nature. Looking at the trees, the birds … some people what you are doing … looking at parks … I’ve been in so many parks you know … listen to the birds … lots of rivers … lakes … what you want … I love the flowers, I love everything … it’s out there for you.” (Peter)

• Identity and self-acceptance within a context of blessedness and grace:

“There is more detail in the stuff I see now. Like before you only see stuff in lines. Now everything is in bigger colour. It’s a beautiful place to be. Like life used to be about negatives once upon a time.” (Cameron)

• Altruism, vocation and satisfaction through service:

“Makes me feel happy because I am helping people out.” (Mary)

How much consideration is given to these existential dimensions of people’s lives by those who are responsible for setting policy and providing supports in both worlds of secular services and faith communities? This thesis asserts that the spirit is “that which

284 enlivens, empowers and motivates,” implying that the spirit energises human beings and as such inspires the human quest for meaning, value, hope, purpose and transcendence.12 Cameron, one such human being, captured this when speaking of a universal quest in seeking God as part of the human condition:

“I’m here for the same reason all of us are. I mean like we have come here to … seek … that someone we should have found a long time ago.” (Cameron)

This is especially true when the quest provides support, encouragement and enhanced enjoyment of life, as reported by some respondents to Question 1:

“Spirit … it means … hear us … help us.” (George)

“We all have a mind, body and spiritual side to us – it’s to do with being connected with God.” (Bill)

“Church and that makes me feel happy.” (Paul)

The above responses support the notion that these 14 people are representative of many others across Australia who desire more in their lives. They are people seeking not only friendship, but also opportunities to give expression to significant existential matters in their lives, matters of value, meaning, vocation and hope in the frameworks of spirituality and religion according to their choice.

The literature review covering spirituality and disability in the past 30 years (2.3.3 (iii)) addressed: ethics, human rights, advocacy, anthropology, narrative, sacramental and liturgical participation, education and awareness of congregations and leadership, friendship, hospitality, vulnerability, healing and homiletics. It is difficult to explain or comprehend the underwhelming response by the disability services sector to these dimensions of people’s lives. Scholarship and awareness of this emerging topic is not absent or inaccessible. In a recent analysis of empirical research relating specifically to intellectual disability, social care services and spirituality in the period 1990 – 2015 the review yielded four main themes that were clearly linked to spiritual or religious care:

12 Peter Nolan and Paul Crawford, “Towards a Rhetoric of Spirituality in Mental Health Care,” Journal of Advanced Nursing 26, (1997): 289.

285 (i) an evident understanding of spiritual or religious concepts;

(ii) support for participation in spiritual or religious activities;

(iii) the importance of spiritual or religious practices in relation to self-identity;

(iv) and barriers to spiritual or religious care provision.

The authors of this 2017 article concluded that, based on these existing themes, there was a need for more empirical and original research in relation to the spiritual care of people with intellectual disability residing in community support contexts.13 It is clearly indicated that such future research should increasingly include consideration of the perspectives of recipients of community support. Their voices need to be heard and either directly spoken into policy contexts or interpreted by advocates who have their best interests at heart.

Given the focus on the Australian, specifically Victorian, context, it is important to briefly revisit three dimensions of broader policy and practice: (i) the historical response by state governments to the spiritual needs of people with intellectual disability; (ii) the hiatus of response since deinstitutionalization in the 1980s; (iii) the emergence of a disability-spirituality movement which seeks to influence both the “in” and “of” sides of Schwartz’s river. The focus in the following sections will predominantly be on the “in” side, that of state policy and service delivery. Some reference will also be made to the “of” side of the river, that of faith communities, regarding the development of FCCV’s ‘Statement’. The significance of that for the “in” side of the river is that it demonstrates interest and commitment by faith communities for the required dialogue and partnership. A bridge has now been created between these two worlds where the ‘planks’ of the bridge have been supplied by those who have traditionally been given no voice.

13 Precious N. Sango and Rachel Forrester-Jones, “Intellectual and Developmental Disabilities, Spirituality and Religion: A Systematic Review 1990-2015,” Journal of Disability and Religion 21, no.3 (2017): 280-295.

286 10.4 History of advocacy relevant to this research project

10.4.1 State of Victoria: Disability action plans

As noted in Chapter 1, until the late 70s numerous state-funded congregate facilities for people with psychiatric or intellectual disability across Victoria were the responsibility of the Health Commission with approximately ten effective full-time (EFT) chaplaincy positions resourced by the Psychiatric Services Division of the Victorian Health Commission. These Public Service positions represented spiritual care by the state and were funded so that chaplains could provide ‘in-house’ spiritual care intervention as part of the response to pastoral and spiritual needs.

In an increasing recognition that people with intellectual disability were inappropriately placed within this medical model of care, a new entity, the Mental Retardation Division (MRD) was established. Within the previous medical model, the person’s pathology was the focus as opposed to their personal attributes and humanity.14 MRD, a Division of the Department of Community Services, was the forerunner of the Office for Intellectual Disability Services (OIDS). Underpinning this transition were the Intellectual Disability Act 1986 and the Disability Services Act 1991 which provided legislature for the planning, management and administration of community-based support services.

As institutions closed, residents were moved to community residential facilities and no corresponding funding was made available for spiritual care/support. Questions posed in Chapter 1.5.2 included:

“Did this mean their spiritual needs were no longer important nor considered as part of holistic care?”

“Is there a consequent role for faith communities to raise concerns about this and potentially assume a role in collaboration with government?”

In Victoria the Disability Act 2006 (‘the Act’) replaced the afore-mentioned legislation concerning people with intellectual disability. This Act stipulates that all public

14 Robyn Munford and Martin Sullivan, “Social Theories of Disability: The Insurrection of Subjugated Knowledges,” in Human Services: Towards Partnership and Support, eds. Patricia O’Brien and Ray Murray (Palmerston North: The Dunmore Press, 1997): 17-33.

287 services—government departments, statutory authorities and statutory corporations— must develop a Disability Action Plan, its purpose being to:

• reduce barriers for people with a disability as community members • make it easier for people with a disability to use services available to all Victorians.

As the principal framework governing policy and service delivery, it became clear to a number of advocates, myself included, that it was important for spirituality to be included in a Victorian Disability Action Plan. Whilst there are policy statements and resources allocated in Victoria for spiritual supports in the mental health and aged care populations, there has been no similar response by government in the disability sector. This research sought to make some contribution to this omission, and was the reason why VALID, as a major advocacy entity, was chosen as a collaborative research partner. Without government endorsement, with accompanying policy statements and education of support staff, the prospects of the service system responding in a way that respects the dimension of spirituality in people’s lives are limited.

Before discussing endeavors and struggles to influence the content of Victoria’s inaugural 2002 – 2012 Disability Action Plan, and subsequent Plans, it is necessary to outline briefly the emergence over the past 20 years of a series of Australia-New Zealand conferences for those concerned with issues of spirituality and disability. A range of advocacy responses has been developed and, pertinent to this research is the 2016 conference at which VALID’s ‘Statement of Spirituality’ was presented as part of the research’s validation process (see 6.10).

10.4.2 Spirituality and disability advocacy in Australia/New Zealand

Since 1996 multi-faith conferences have been held across Australia and New Zealand bringing together people who are interested in exploring the spiritual dimensions of spirituality and disability. Participants have included those with disability, family members, care-givers, academics, faith representatives and community service/support organizations. These conferences have prompted significant conversations across the faith spectrum, exploring the lived experience of disability,

288 myriad ethical issues, and interpretations of sacred texts.15 The inaugural conference in Brisbane, Queensland was followed by Adelaide, South Australia (1998); Melbourne, Victoria (2001); Wellington, New Zealand (2003); Sydney, New South Wales (2004); and Melbourne, Victoria (2016). As part of my employment, I was the coordinator of the 2001 and 2016 conferences in Melbourne, both titled Exclusion and Embrace, drawing on Volf’s book title.16 The 2016 conference Exclusion and Embrace: Disability, Justice and Spirituality, fell within this Doctoral research period of 2012 – 2018 and provided a vehicle to introduce and recognize VALID’s ‘Statement’.

The 2001 Melbourne Conference provided the starting point to discuss advocacy to the Victorian government to take up its responsibility for supporting and enabling people with disability to participate in chosen contexts of spirituality and faith. The Minister of Community Services, Hon. Christine Campbell attended this conference, as did her principal advisor.

10.4.3 Struggle for recognition of spirituality since 2001

Since the 2001 Conference the narrative of the acknowledgement of spirituality in state government policy statements regarding disability services has been a chequered one. A successful application was made in 2004 by the Uniting Church for funding from the State Disability Plan ‘Innovation Grant’ scheme. Supported by the Victorian Council of Churches and the Leaders of Other Faith Communities,17 and through five forums held across Victoria, the project sought:

… to enhance the capacity of faith communities, community services providers, disability service providers, advocacy groups and carers within Victoria to promote the inclusion of people with disabilities.18

A major finding and recommendation proposed that an awareness of spirituality should be acknowledged and integrated with person-centered planning and service provision, with the necessary bridging to faith communities. In order to achieve this goal, it was

15 Andy S. Calder, foreword to Conference Papers: Exclusion and Embrace: Conversations about Spirituality and Disability, ed. Christopher Newell (Melbourne: UnitingCare Victoria, 2002), v. 16 Volf, Exclusion and Embrace. 17 Forerunner to Faith Communities Council of Victoria (FCCV Inc.). 18 The Inclusion of People with Disabilities in Faith Communities – Final Report. (Victorian Department of Human Services, 2005), 4.

289 recommended that the government provide modest funding to produce resources and education materials for its staff.19 This recommendation was consistent with that of Swinton’s UK research in the ‘No Box to Tick’ report.20

Concurrent with this encouraging development, the State Disability Plan, 2002 – 2012 recognised for the first time that:

… people with a disability are citizens who have the right to be respected and the right to have equal opportunities to participate in the social, economic, cultural, political and spiritual life of society (writer’s emphasis).

A significant factor in the successful outcome of both the funding application and the inclusion of people’s ‘spiritual life’ in that State Disability Plan can be attributed to the advocacy of the then principal advisor to the Minister of Community Services. She recognised the importance of the issue and was supportive of endeavours being undertaken. However, hopes were diminished when the recommendation for development of education awareness material for support staff was unsuccessful. Peter Gibilisco, reflecting on his personal experience of disability, also affirms the central role of support workers being equipped to support people’s aspirations:

People with severe disabilities want and are competent to perform the majority of human activities with the help of a skilled and empathetic support worker. The goals of Victoria’s State Disability Plan are to ensure such needs are adequately met; at least that is what it implies.21

In 2010 with joint funding between the Uniting Church and the Victorian Office for Disability, a collaborative research project sought to build on the recognition of spirituality within the 2002 – 2012 Plan. Given Victoria’s multi-faith context, the perspectives of people with disability from Buddhist, Christian, Jewish and Muslim traditions were sought, along with leadership of those traditions, regarding participation in worship and social activities. The report ‘To Belong I need to be Missed’ reiterated the principal recommendations of the 2005 report: The Inclusion of People

19 The Inclusion of People with Disabilities in Faith Communities, 2005. 20 Swinton and Morgan, “No Box to Tick”, 3. 21 Peter Gibilisco, The Politics of Disability: A Need for a Just Society Inclusive of People With Disabilities (BC, Canada: CCB Publishing, 2014), 228.

290 with Disabilities in Faith Communities.22 To date, despite a range of advocacy the recommendations have not been acted upon.

Unlike the 2002 – 2012 Victorian State Disability Plan, successive Plans 2013 – 2016, and 2017 – 2020 have neglected to refer to the dimension of spirituality, despite advocacy to do so. When not ‘named’ in policy statements there is no requirement for service providers to respond in any way that might fulfil people’s aspirations and wishes. In terms of the United Nations Convention on the Rights of People with Disabilities 2006 which is explicit about discrimination regarding religion, I believe this omission by the Victorian state government constitutes a breach of its own obligations under that Convention to support optimal social inclusion of people in its care. The voices of respondents in this research will be added to the call for this omission to be remedied.

The next section focuses on events in 2016 which helped to develop the research’s second question. VALID’s ‘Statement’, as initially hoped, has become an important document in subsequent conversations with key government personnel. FCCV’s ‘Statement concerning People with Disability’, has also become increasingly important and persuasive in advocacy.

10.5 Impact of this research project: fulcrum of 2016

10.5.1 Two Policy ‘Statements of Spirituality’

10.5.1.1 VALID’s ‘Statement of Spirituality’

In early 2016, following data analysis I met again with OPA staff, including the Victorian Public Advocate herself, (described in 6.10), and shared these results, seeking advice about strategy in agitating for recognition of spirituality’s importance within public policy. Given the rights-based context of state policy and service delivery they recommended that any communications and/or advocacy should strongly feature the United Nations Convention on the Rights of People with Disabilities 2006. This Convention underpins all legislative frameworks for disability services.

22 Andy Calder, “To Belong,” 262-286. See Chapter 3 for greater detail.

291 To advance this, and based on the findings of the 14 interviews, OPA affirmed the process underway with VALID, a rights-based organisation, to develop a ‘Statement of Spirituality’. The process of this development was detailed in Section 6.9; its purpose was to champion the issue across the sector and have an influence in policy development. The emergence of this research-informed Statement is believed to be the first time in Australia that a non-faith-based advocacy organization in the disability sector has ratified a statement attesting to the importance of spiritual expression.

As a sign of its commitment to both the process and to the issue itself, the Statement appeared on the homepage of VALID’s website as a Position Statement on the current issues that affect people with a disability: https://www.valid.org.au/sites/default/files/Spirituality%20Policy.pdf (Appendix 20).

Serendipitously, as noted above, the sixth conference on disability and spirituality was held 21 – 23 August, 2016 in Melbourne. As part of the research validation the findings of the 14 interviews were presented at this conference (see 6.10).

10.5.1.2 Faith Communities’ Council of Victoria (FCCV Inc.) ‘Statement concerning people with Disability’

Faith communities across Victoria have very low rates of participation by people with disability, including people with intellectual disability. One hoped-for outcome of this research was to raise awareness among faith communities about the expressed spirituality of people with intellectual disability, aiming for increased responsiveness to people isolated by disability. Seeking a response that focused on friendship, and using my bridge-building role an approach was made in early 2016 to both the Chairperson and Executive Officer of the Faith Communities Council of Victoria (FCCV Inc.) 23 This government-funded group operates as a peak body for all faith communities including the Victorian Council of Churches (VCC).

23 Established in 2010, the Faith Communities Council of Victoria (FCCV Inc.) is Victoria’s umbrella multi-faith body. FCCV was created to contribute to the harmony of the Victorian community by promoting positive relations between different faiths and greater public knowledge and mutual understanding of the teachings, customs and practices of Victoria's diverse faith traditions.

292 The aim was for FCCV to also consider developing a formal Statement that recognizes the importance of spirituality and the inclusion of people with disability in faith communities. The FCCV was invited, and agreed to be, an endorsing body for the 2016 Exclusion and Embrace conference. As an organization with limited prior awareness of people with disability, those FCCV members present at the conference deepened their engagement with, and commitment to, disability issues as a result. VALID’s ‘Statement’, combined with personal perspectives of people with disability at the conference, were significant to this deepening commitment. FCCV subsequently agreed to develop its own policy Statement for people with disability in Victorian faith communities and at the request of the FCCV I worked with them on a draft Statement. With some minor changes, the inaugural ‘Statement concerning People with Disability’ was adopted by its Council and formally launched at FCCV’s annual Conference on 13 November 2016.

It is the first time that an umbrella body representing faith communities in Victoria has formally adopted a Statement of this kind. It has become a springboard for future advocacy and response by faith communities, including Christian communities as described in Chapter 9. Details of the Statement and the Launch were distributed in the December 2016 monthly edition of the Faith Communities Council of Victoria.24

To enhance awareness of and communication between the worlds of “in” and “of”, at my request the Disability Resource Advocacy Unit (DARU)25 posted (15 December 2016) FCCV’s ‘Statement concerning People with Disability’ in its fortnightly newsletter which circulates widely across the Victorian disability sector.26 To illustrate how the spheres of ‘public policy’, ‘spiritual communities’ and ‘professionals’ exist on different sides of the river, and to emphasise the importance of bridges that enhance dialogue and cooperation, the resident cartoonist at the 2016 Conference, Exclusion and Embrace: Disability, Justice and Spirituality, captured it as below.

24 http://faithvictoria.org.au/news-a-articles/421-statement-concerning-people-with-disability accessed 20 November, 2018. 25 DARU is a State-funded and state-wide service established to resource the disability advocacy sector in Victoria. One of its main roles is to disseminate information of importance and interest to people with disabilities and the disability support sector. 26 http://www.daru.org.au/resource/11661 accessed 17 September, 2018.

293

Figure 5: The ‘Uncomfortable bed-fellows’ – Shelley Knoll-Miller 27

The development and formal endorsement of these two Statements is important for the momentum of current and future research. Firstly, it indicates possibilities for enhanced inclusion opportunities and social connectedness between the realms of secular/state and of faith, the realms of “in” and “of”. It is also consistent with this research’s clear practical theological focus and impact, and embedded commitment to praxis and bridge-building between these realms. Engagement with these two Statements in advocacy with senior government personnel will be described in the following sections.

10.5.2 Influence of ‘Statements’ for advocacy since 2016

Following the omission of spirituality in the 2013 – 16 State Disability Action Plan, the Uniting Church sought to address this in the 2017 – 2020 Plan. Formal submissions referred to the two Statements above, stressing the need for inclusion of spirituality’s importance, as in the previous 2002 – 2012 Plan. In addition, 75 concerned people were mobilized to send letters to the Minister for Housing, Disability and Ageing, requesting the same consideration. The CEO of VALID agreed to be involved from within his role and agreed to requests for interviewees from VALID’s Self-Advocacy network to participate in delegations or meetings with government personnel.

27 Reproduced with artist’s permission.

294 Section 1.4.3 referred to the advocacy of Spiritual Health Victoria (SHV) and its influence in recognition of spirituality in the sectors of aged care health and mental health.28 The Chief Executive Officer of SHV agreed that there was a major inconsistency in state policy with spiritual care and support for people with disabilities being overlooked. In October 2016 she wrote to the Minister for Housing, Disability and Ageing referring to the two Statements from this research. She requested a meeting with the Minister for a delegation which would include one or two of the 14 interviewees and that consideration be given to:

(i) undertaking a comprehensive evaluation/audit to ascertain awareness of and responsiveness to spiritual needs in the disability sector;

(ii) recognizing the importance of spirituality for health and well-being in the Government’s Disability Action Plan (2017 – 20).

The Minister did not agree to a meeting but instead referred the request to the Director of the Office for Disability who was personally supportive of spirituality’s inclusion in the about-to-be released Plan and was impressed with VALID’s ‘Statement’. However, she explained that the issue of spirituality and faith community involvement had been subsumed in a generic category of ‘Community Participation’ and that the content of the 2017 – 2020 Plan had been finalized. Clearly more evidence-research is indicated if policy is to be influenced.

The Director advised that many support services for people with intellectual disability were being progressively transferred from the responsibility of the Victorian government to the National Disability Insurance Scheme (NDIS), and that whilst the NDIS was in its infancy, the most effective efforts in gaining recognition for spirituality lay in approaching senior personnel of the National Disability Insurance Agency (NDIA) which has jurisdiction for the NDIS. Emphasis could be placed before the professional planners of individual packages to gain awareness of and include spirituality in the list of life areas when developing plans with clients and families. At

28 SHV advocates for spiritual care as integral to person-centred health care: funding, education, professional support and development of Standards. Such advocacy is also evidenced by spirituality’s importance, and the practice of pastoral care, being stated in a range of documents related to ageing, palliative care, mental health, community health and hospitals.

295 this point of limited political traction a level of cynicism arose: a full circle had been turned and there was now a different bureaucracy to confront with the same issues!

This seems to reflect Volf’s analysis of liberal democracy’s neutrality and dismissal of religious content in public issues.29 In spite of individuals in influential positions being personally supportive, such as a principal ministerial advisor and Director of the Office for Disability respectively, are they also in fact ‘swimming against the tide’ of societal and political processes that have an ingrained suspicion of things related to religion and matters of the spirit? It would appear so. Where to next?

The Director of the Office for Disability provided an introduction to a senior strategic advisor of the NDIA. A brief outline of the structure and purpose of NDIS is relevant as it will largely replace the existing system of disability care and support under the National Disability Agreement (NDA).30 Advocacy with staff involved with development of the NDIS operational framework will be described with the goal of including spirituality when preparing individualised plans.

10.6 National Disability Insurance Scheme (NDIS)

A major transformation is taking place in Australia regarding ‘service delivery’ and support of people with disability. In 2011, the Productivity Commission recommended that Australia replace the existing system with a unified national scheme to fund long- term, high-quality care and support for all Australians who experience significant disability. This was to be known as the NDIS.31 It described the existing system as “underfunded, unfair, fragmented, and inefficient, arguing that it gave people with a disability ‘little choice and no certainty of access to appropriate supports.”32

The NDIS is jointly governed and funded by the Australian government, participating states and territory governments. The main component is individualized packages of support for eligible people with disability, with emphasis on supporting independence

29 Volf, A Public Faith, 72-73. 30 This Agreement between the Commonwealth States and Territory governments is designed to ensure the disability services sector delivers outcomes that improve the lives of Australians with a disability. 31 The Productivity Commission provides independent research and advice to Government on economic, social and environmental issues affecting the welfare of Australians. 32 https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/ Parliamentary_Library/pubs/rp/rp1617/Quick_Guides/NDIS accessed 1 March, 2018.

296 in social and economic participation. Implementation commenced in July 2016 and by 2019 it is expected that around 460,000 Australians will be beneficiaries.

The NDIS also has a broader role in helping people with disability to:

• access mainstream services, such as health, housing and education;

• access community services, such as sports clubs and libraries;

• maintain informal supports, such as family and friends.33

In Victoria, where this research was conducted, responsibility for many support services for people with intellectual disability is being progressively transferred to the NDIS. What actions followed?

In keeping with the recommendation of the Director of the Office for Disability, during 2017, the CEO of SHV and I met on three occasions with the senior strategic advisor of the NDIA, referring each time to the two Statements emanating from the research. They were encouraging conversations and he undertook to advocate at the highest levels for the inclusion of spirituality when individual plans are devised and enacted. This would include promotion of the importance of participation in faith communities for people who would otherwise never have that possibility drawn to their attention by planners when service plans were being developed.

He also recommended that consideration be given to expanding the topic of this Doctoral research beyond the initial cohort of 14 people and become the subject of a national Linkages Project application, within the Australian Research Council (ARC). If successful, the results could provide significant evidence to the NDIA and influence its policy decisions.

Parallel with these conversations I convened a national telephone conversation with peers similarly concerned about inclusion of spiritual dimensions within the NDIS planning processes. We shared frustrations, hopes and efforts to date, including those of David Treanor whose articles critique the NDIS as a marketplace. If there is no equivalent focus on enabling people with intellectual disability to lead a meaningful

33 http://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/ pubs/rp/rp1617/Quick_Guides/DisabilityInsuranceScheme accessed 11 May, 2017.

297 and personally flourishing life in a network of intimate, personal and social friendships then the “NDIS does not address our human nature. To develop fully as a person, our human nature needs to be prioritised to the personal centre of our being.”34

Also involved was Professor Patricia O’Brien, Director of The Centre for Disability Studies (CDS), affiliated with the University of Sydney. She described a PAR pilot study conducted in 2015 by the Inclusive Research Network (IRN) of CDS which indicated that those researchers with intellectual disability had limited knowledge of the NDIS and how it would impact their lives. Her Centre was keen to explore in greater depth the relationship between individualized funding and the person’s perception of their psycho-social quality of life. As one of three Chief Investigators (with Emeritus Professor Trevor Parmenter and Dr Vivienne Riches), she indicated her Centre was developing an application for an ARC Linkages Project (2018 – 2021) grant to further this aim.

Based on the research within this thesis, particularly the PAR approach and outcome of VALID’s Statement, she agreed to incorporate the dimension of spirituality in the project’s design and referenced this in the ARC application. Implications for Practice and Indications for Future Research are dynamic parts of any Doctoral research so this offer is recorded here as an encouraging note of wider relevance. Accordingly, the following section will describe this project (‘Quality of Life with Individualized Funding and an Intellectual Disability’), because it locates the current and future value of the stories of our 14 participants.35 This is a full turn of the circle. In section 1.5.1 when discussing QOL the hope was expressed that the current research would contribute to the literature of QOL, especially as it relates to the dimension of spirituality. As Liegeois points out, it is remarkable there is no trace of spirituality in QOL domains, given its importance to so many people.36 14 voices can make a difference.

The NDIS is a major political and legislative framework which provides a national dialogue and response to the needs of people living with disability. As it continues to

34 David Treanor, “Does the Australian National Disability Insurance Scheme Enhance Personal Quality of Life?” Research and Practice in Intellectual and Developmental Disabilities 5, no.1 (2018): 67. 35 This current researcher has been formally included as a Partner Investigator in the Application. 36 Liegeois, “Quality of Life Without Spirituality?” 303-317.

298 develop the opportunity to contribute about spirituality’s importance is timely. Shane Clifton writes that “it is precisely here that the church has the opportunity to speak to and even challenge and reframe the society of which we are a part.”37

10.7 Australian Research Council: Quality of Life research

Section 1.5.1 described the principles and domains as they currently apply to QOL measurement for people with intellectual disability. In Australia, as people with disabilities transfer to individualized NDIS funding packages, little is known about how they experience life with such packages, and its impact on their quality of life. People with cognitive impairment represent up to 69% of NDIS recipients transitioning to this funding arrangement. This project will increase the knowledge base about quality of life in individualized packages, and contribute to training co-researchers with intellectual disability.

By developing methods for use with 75 participants with an intellectual disability in receipt of an NDIS service ‘package’, the research aims to:

1. identify perceptions held by adults with intellectual disability about their lives under individualised funding and to assess its impacts on having their needs meet, their well-being and self-esteem over a 36-month period; 2. evaluate the everyday ways that individuals with various levels of intellectual disability exercise choice and control, and harness the supports required to do so; 3. identify ways people with intellectual disability believe industry practice (but particularly support coordination) could be bettered to further enhance wellbeing (both their own and the wellbeing of other people with intellectual disability); 4. develop from the findings recommendations for government and industry to inform implementation of and guidelines for the individualised funding scheme;

37 Shane Clifton, “NDIS, the Disabled Voice and the Church,” St.Mark’s Review 2, no. 232 (July 2015): 77.

299 5. investigate the role that co-researchers with intellectual disability can play in service evaluation.

A multi-method approach will be used with the Partner Investigators and Organisations accountable to a Steering Committee comprising the 3 Chief Investigators. Most significant will be the role of the Inclusive Research Network (IRN). Since its inauguration in 2007 it has worked with The University of Sydney on varied research projects and includes 15 people with intellectual disability, 4 support workers and 4 university researchers.38

In the event this application is successful, the opportunity exists to further the knowledge gained in this Doctoral research by applying it within the design of the ARC project. In collaboration with the IRN and Steering Committee, at this stage it is envisaged that the 8 primary questions, based on Swinton’s schedule, may be replicated. It is anticipated that responses from the cohort of 75 participants would provide added impetus and information to their quest for enhanced quality of life as an NDIS recipient. Given the credibility and profile of an ARC Linkages Project, such information could also carry significant weight in policy discussions with the NDIA and consequent NDIS planning processes. It is hoped that such an outcome would also contribute to the international conversation and literature about the importance of spiritual beliefs and expressions as a domain of people’s well-being and quality of life. It is also hoped that recognition by the NDIS of spirituality’s importance would provide evidence and impetus for future Victorian Disability Action Plans.

This chapter has highlighted advocacy and actions since 2001, particularly since 2016 as a result of this research. Such actions have neither been predictable in their outcomes, nor in their effectiveness in advancing the importance of Bill’s aspiration:

38 Information from Application: ‘AUSTRALIAN RESEARCH COUNCIL Linkage Projects Proposal for Funding Commencing in 2018’. PROJECT ID: LP180100209. First Investigator: Prof Patricia O’Brien. Administrative Organisation: The University of Sydney. Research outputs up to this point include multiple conference papers (see https://cds.org.au/promotinginclusion/ inclusive-research/ and their work in action can be seen on a video (see https://cds.org.au/research-projects- resources/videos/).

300 “I think a few of these organisations can do more to advocate in this area, to make sure that people with a disability get that side of that particular aspect gets looked after a bit more (sic) … because at the moment there is very little … and it could be a lot better.”

As a practical theologian in a secular public sphere, and with a belief that the gospel is enlivened when people find belonging and embrace as a result of their spiritual beliefs and hopes, I have a prayer. My prayer is that the “in” side of Schwartz’s river, the Victorian disability services sector, will come to respect the significance of people’s rights and aspirations to spiritual expression, and provide meaningful policy and supports, as currently provided in both the mental health and ageing sectors of care.

10.8 Relationship to practical theology/praxis

Chapter 4 laid the philosophical and theological foundations for the place of practical theology. Theological reflection was described as:

… the art of making theology connect with life and ministry so that the gospel is enlivened. Theological reflection is at the heart of the nature and task of practical theology.39

Thomas Groome notes that Aristotle used the term praxis to refer to any kind of practical activity, considering it to be a source of and expressive of ‘conation’ or the process of moving towards activity. However, as a precise term, he reserved it for public political activity.

Aristotle’s most frequent use of the term praxis was to describe reflective and purposeful human activity of any kind. Yet he used it most precisely to describe ethical conduct according to “right reason in political life”. The purpose of praxis is further praxis, not rationally certain ideas.40

Undeterred by setbacks and spurred by Groome’s summation that “the purpose of praxis is further praxis, not rationally certain ideas,”41 VALID’s ‘Statement’ and FCCV’s

39 Ballard and Pritchard, Practical Theology in Action, 118. 40 Thomas H. Groome, Sharing Faith: A Comprehensive Approach to Religious Education and Pastoral Ministry: The Way of Shared Praxis (New York: Harper Collins, 1991), 44. 41 Groome, Sharing Faith, 44.

301 ‘Statement’ have become vital instruments for ongoing discussions and advocacy. Ernest Stringer reminds us that action research is a collaborative approach to inquiry or investigation in community-based research that provides people with the means to take systematic action to resolve specific problems. The researcher in community- based approaches is not so much an ‘expert’ who does research rather, they act as a resource person. Their role is to act as a catalyst to assist stakeholders in defining their problems clearly and to support them as they work toward effective solutions to the issue that concerns them.42 That indeed is how I have seen myself and has been the defining principle guiding this research project. It is hoped that momentum is strengthened as a result.

In keeping with the purpose of praxis being further praxis, and considering similar future research with this cohort, it is important to outline the limitations of this research and recommendations for future which have two dimensions: (1) the conduct of the research itself and (2) implications for policy and practice.

10.9 Research limitations

It is interesting to ponder why this cohort identified with only Christian perspectives. When presenting at VALID’s metropolitan network meetings, might these 14 people have made a particularly strong association with me as a Christian minister and researcher? Might the staff accompanying people to the advocacy networks, and who subsequently provided support with information and signed agreements, also be more likely to have Christian allegiances in a society that largely adheres to Christian values?

Whilst the initial aim had been to recruit up to 20 people the cohort of 14 nonetheless aligned with research projects engaging IHP methodology. Had another 6 people been interested in participating would this have altered the final two superordinate themes? That is a point of conjecture – whilst it would have been beneficial to have had additional interviewees, providing more rich descriptions, it is proposed that the 22

42 Ernest Stringer, Action Research: A Handbook for Practitioners (London: Sage Publications, 2007), 15-38.

302 themes, and ultimately, the 2 superordinate themes, are unlikely to have been different. These themes can still add to the development of future research questions.

One of the possible reasons for less than 20 recruits was the delay in my initial presentation to all networks in 2013, and subsequent recruitment processes of early 2014. Apart from a VALID newsletter article about the research in late 2013, people next heard of the opportunity when staff presented the ‘Information Pack’ to the metropolitan networks.

The cohort was predominantly of Anglo-Celtic heritage and did not reflect Victoria’s diverse Culturally and Linguistically Diverse (CALD) communities. Reasons for this may have been my use of spoken and written English only (including Easy English), and my identity as a white Anglo-Saxon, meaning interviewees may have responded on the basis of familiarity. Future research in this arena may consider purposive sampling of CALD populations to elicit a wider range of responses that can be compared for difference or similarity.

A constraint of the research was conducting one interview only per person; this was part of the design on account of available time and travel involved given the geographic spread of interviews. A second interview, based on initial findings, may have provided an opportunity to explore in greater depth an individual’s interests or to check the accuracy of data analysis and interpretation. The benefits of a second interview would need to be weighed up against time spent on transcription, which was considerable. However this researcher believed that a ‘hands-on’ approach throughout and manual transcription/analysis enabled him to be more immediately immersed at all points.

303 10.10 Recommendations

Recommendations arising from this research are two-fold:

(i) the conduct of the research itself which embodies a procedural critique and,

(ii) implications for policy and practice.

(1) The research process

That:

(i) PAR be affirmed as an effective approach in the exploration of this topic.

(ii) Self-advocates be affirmed as the experts, thus contributing to the depth, breadth, integrity and rigour of research.

(iii) Future researchers using or adapting Swinton and Powrie’s questionnaire should consider adding “Do you like being in nature?” 43

(iv) To reduce literal responses to “Why do you think you are in the world?” (Q7) the question be reframed as: “Do you think you have a reason for being alive? If so, what is it?”

(v) A larger cohort of participants be recruited to add depth and breadth.

(vi) Participants be recruited from multi-faith contexts representing the diversity of the Victorian community.

(vii) Co-researchers and recruiters reflect this diversity.

(viii) Consideration be given to a second interview for more in-depth information.

(ix) Future research explores in depth the significant spiritual issues raised but not focused on in this research. Topics include grief and loss, attributes of God/deity, existential considerations, liturgical participation, prayer, relationship with the natural realm, identity and self-acceptance.

43 Environmental Domain based on Fisher, “The Four Domains Model,” 17-28.

304 (2) Practical and policy implications

That:

(i) The findings of this research are disseminated widely within both the faith contexts of Australia and the disability services sector.

(ii) VALID’s ‘Statement of Spirituality’ be promoted by VALID’s self-advocates to enable wider dialogue and engagement amongst both VALID’s membership and policy-makers within the disability services sector.

(iii) FCCV’s ‘Statement concerning people with Disability’ be promoted within Victoria’s faith spectrum for dialogue and engagement, with emphasis on the importance of friendship.

(iv) The National Disability Insurance Authority (NDIA) be informed of the outcomes of this research and that the importance of friendship and spirituality be addressed within the NDIS.

(v) In the event of a successful application for an Australia Research Council Grant, these research outcomes are used to inform its design.

(vi) In promoting and supporting personal relationships, friendships and connectedness considerable work is yet to be done. The neglect of the views of adults with intellectual disability by policy makers (both state and faith) is attributed to the paucity of research focusing on their views and aspirations regarding spirituality. Their voices demand more.

(vii) Spiritual Health Victoria continues to highlight the inconsistency of spirituality’s absence in state government policy regarding people with disability.

(viii) This research contributes to dialogue amongst Quality of Life (QOL) scholars considering inclusion of spirituality’s importance.

(ix) Results of this research be published in relevant scholarly publications, including ‘Practical Theology’ and the ‘Journal of Religion and Disability’.

305 Conclusion

In concluding Chapter 1 the movement from “What is?” to “What can be?” was introduced as a guiding mantra for this endeavor. In theological terms, for people who have historically lived outside the mainstream of community life, in a place of exile, and who now physically live within the mainstream, is there a new song to be sung in a strange land? Is there a hopeful re-imagination of how life might be lived more fully in a land no longer so strange?

In pursuit of the two research questions, and motivated by this mantra, chapters 4 and 5 respectively outlined the research rationale and choices made, engaging principally with qualitative methodology and methods.

Chapter 4 elucidated engagement with praxis (orthodoxy/orthopraxy) by use of Stringer’s basic action research process of “look, think, act”, and Holland and Henriots’ pastoral circle of Experience, Exploration, Reflection and Action. Whitehead and Whitehead’s model (Experience, Culture and Tradition) and method (attend, assert, action), provided the principal theological reflection framework. Chapter 5 engaged with Carter and Little’s model of the relationship between epistemology, methodology and methods, providing the philosophical underpinnings of Interpretive Hermeneutical Phenomenology (IHP) and participatory action research (PAR).

In the subsequent description of the research process, transcription and analysis, chapters 9 and 10 respectively developed a critique of Christian faith communities to respond with friendship, whilst Chapter 10 detailed endeavours for spirituality to be recognised in public policy and service delivery. The contribution of this research in the tangible form of two ‘Statements of Spirituality’ provides a significant basis for ongoing dialogue and bridging between the worlds of “in” and “of”. In having undertaken this complex research it is tempting to say the task is now completed. But that would be folly. Ongoing vigilance and commitment is required; the very essence of praxis.

It is to be hoped however that Diogenes would be pleased with the work of this bricoleur, in which:

306 … the interpretive bricoleur produces a bricolage – that is, a pieced- together set of representations that are fitted to the specifics of a complex situation. 1

By using the lamps of listening and collaboration, the hope is that this bricolage has further illuminated the experience and knowledge of people who are real human beings, and whose quality of life may be enhanced as a result. This research has sought to add to the knowledge that has been gained in recent decades about the importance of spirituality for people with disability generally, but more specifically as it relates to this project, that of adults with intellectual disability. By adopting a collaborative approach, the research has also added to the emerging body of participatory action research which honours and respects the fact that adults with intellectual disability have the final say on what their experience means to them. This is consistent with Shakespeare’s assertion that:

Recognising the expertise and authority of people with impairments is very important. The disability movement is all about speaking for ourselves. This is what it is like to be disabled. This is what it is like to have an impairment. It is about demanding that we are respected as the real experts on disability … 2

1 Denzin and Lincoln, “The Discipline and Practice of Qualitative Research,” 4. 2 Tom Shakespeare, “Understanding Disability”, keynote address given at The Disability With Attitude International Conference, University of Western Sydney, 2001.

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Appendices

337 Appendix 1: Having A Say Conference 2013

Having a Say Conference

VALID February 7, 2013

Presenter

Andy Calder, Uniting Church

n Introductions

n Some talk about Faith and Spirit

338 What does faith mean?

You might believe in God or a god

339 What does faith mean?

You might read religious stories

What does faith mean?

You might join in religious festivals or services

340 What does faith mean?

You might pray or meditate

What does faith mean?

You might meet new people

341 n Maybe you don’t do any of these things!

n Maybe you put your faith in something else – or you don’t believe in anything at all?!

‘To Belong I need to be Missed’

This was the name of a report about Disability and Inclusion in faith communities in Victoria. It was funded by the Office for Disability and the Uniting Church and came up with 3 important things.

342 n ‘To Belong I need to be Missed’

1. You need to get into the place – temple, synagogue, or church - it needs to be accessible!!

‘To Belong I need to be Missed’

2. You need to feel welcome, and not treated differently

343 ‘To Belong I need to be Missed’

3. You need to have a say about your faith community

Thanks for coming.

If you like, I would like to talk with you more about this!

Mayer-Johnson LLC gave permission for the Picture Communication Symbols © 1981 – 2010 to be used in the Easy English document from 2010.

344 Appendix 2: Self-Advocacy Network

345 Appendix 3: Network Presentations 2013

VALID Self-Advocacy Network Presentations

March/April 2013

Presenter

Andy Calder, Uniting Church/Melbourne College of Divinity

n Introductions

n Some talk about Faith and Spirit

346 What does faith mean?

You might believe in God or a god

What does faith mean?

You might read religious stories

347 What does faith mean?

You might join in religious festivals or services

What does faith mean?

You might pray or meditate

348 What does faith mean?

You might meet new people

n Maybe you don’t do any of these things!

n Maybe you put your faith in something else – or you don’t believe in anything at all?!

349 ‘To Belong I need to be Missed’

This was the name of a report about Disability and Inclusion in faith communities in Victoria. It was funded by the Office for Disability and the Uniting Church and came up with 3 important things.

n ‘To Belong I need to be Missed’

1. You need to get into the place – temple, synagogue, mosque or church - it needs to be accessible!!

350 ‘To Belong I need to be Missed’

2. You need to feel welcome, and not treated differently

‘To Belong I need to be Missed’

3. You need to have a say about your faith community

351 Thanks for coming.

If you like, I would like to talk with you more about this!

Mayer-Johnson LLC gave permission for the Picture Communication Symbols © 1981 – 2010 to be used in the Easy English document from 2010.

352 Appendix 4: VALID CEO Letter of Request

Mr Kevin Stone Chief Executive Officer VALID Inc 235 Napier Street

Fitzroy, 3065.

February 14, 2014

Dear Kevin

Further to our recent conversations I am writing to request permission to undertake group conversations and subsequent individual interviews (up to two per person) with up to 20 people who are associated with VALID’s networks. These conversations will provide information and stories about people’s experience of spirituality. The title of my Ph.D. research proposal with the University of Divinity, Melbourne is: Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

The group and individual conversations will both use the following questions, with the group conversations being maximum length of one hour, whilst the individual conversations will be between 30 and 40 minutes. The questions are as follows:

1. What is spirituality?

2. What makes you feel good about yourself?

3. What do you like best about your life?

4. Are friends important to you? Why?

5. What do you want to do with your life?

6. Do you think there is a God?

7. Why do you think you are in the world?

8. Do you like being connected to nature?

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9. Is there anything else about spirituality you would like to talk about?

10. After talking about these things, are there any changes or actions that would make things better?

Participant Information Statements and Consent Forms (also in Easy English formats) will be submitted to, and then need to be approved by, the Human Research Ethics Committee (HREC) of the University of Divinity, before any research can commence. Its next meeting is April 7, 2014 and I need to submit my proposal by March 14. If approval is granted in April, I anticipate commencing interviews as soon as possible after that date.

This research seeks to understand the perspectives and experiences of people as they tell it. There will be no proselytising on my part and I am in the process of applying for a national Police Check. It is hoped as an outcome of the research that the issue of spirituality will be discussed more widely within the advocacy and human service sectors, with recognition of its rightful place in people’s lives.

I appreciate VALID’s interest in this research and the ongoing support of staff members. Should you have any further queries please contact me on either [email protected] or 0417562556. Given the HREC timelines and the requirement to include your letter with my application, I would be most grateful of receiving your letter of permission by the end of February.

Yours Sincerely

Andy Calder

141 Ramsden Street Clifton Hill, 3068

354 Appendix 5: VALID CEO Permission

355 Appendix 6: Participant Information Statement

PARTICIPANT INFORMATION STATEMENT

Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

Thank you for expressing interest in this research project.

My name is Andy Calder. I am conducting research with adults with an intellectual disability and asking questions about spirituality in order to learn and understand how this aspect of life might be important to them. Thanks for being willing to read through this information which explains what is required if you choose to be involved in the research, and are selected. If you wish to participate you need to be legally able to consent and sign the Participant Consent Form (there is an Easy English version if you would rather sign that).

(1) What is the study about?

This study investigates the experience of spirituality for adults with an intellectual disability. Spirituality or faith or religion, however people name it, is an important part of some people’s lives, and yet it is not talked about very often, nor given consideration when it comes to public policy or developing support plans. The study is being supported by VALID (Victorian Advocacy League for Individuals with Disability Inc), who have agreed to the researcher circulating this letter of invitation to people involved in VALID activities and networks (metropolitan and rural/regional).

The study will listen to the stories and experiences of people, seeking to learn what difference spirituality might make to a person’s quality of life. It is hoped that participants will enjoy the experience of talking about an area of life that is significant, whilst also contributing to a change in society which recognises spirituality as having a rightful place in people’s lives. The study’s aim will be achieved through three phases: (a) One or two individual interviews with the researcher that focus on the ten questions listed below;

(b) If you agree to it, the provision of a summary of the conversation to check it is an accurate record;

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(c) Present the findings and results of these group and individual conversations to government and specific advocacy and service organisations, with a view to developing recommendations about how holistic support could be improved in Victoria.

You are being invited to participate in the first of these phases.

(2) Who is carrying out the study?

Andy Calder is studying for a Doctor of Philosophy degree (Ph.D.) within the University of Divinity, which is located in Melbourne. He is a Uniting Church minister currently working in the area of disability inclusion, and has been interested in this topic for a long time. It is also important that you know he is interested in learning about all kinds of spirituality, will confine his interview process to listening, and will not be trying to convert you to his way of thinking.

(3) What does the study involve?

The one or two interviews with Andy would take place at a location suitable to you. You may wish to have a chosen support person with you (family, friend, or staff person). With your consent, the interviews will be recorded on audiotape. The audiotape will then be transcribed to ensure an accurate record of the interview proceedings. The information you provide will be confidential and will be available only to Andy who will be required to sign a confidentiality agreement. If you wish and agree, a summary of the interview(s) will be sent to you very soon afterwards to check it is an accurate record of the conversation.

You are encouraged to bring with you any photos, artworks, symbols, certificates or items that will help you talk about the questions below.

1. What is spirituality? (A general question to see whether the term itself has any meaning)

2. What makes you feel good about yourself? (value)

3. What do you like best about your life? (meaning)

4. Are friends important to you? Why? (connectedness/relationships)

5. What do you want to do with your life? (hope)

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6. Do you think there is a God? (searching for the transcendent)

7. Why do you think you are in the world? (search for identity and purpose)

8. Do you like being connected to nature? (awe and wonder).

9. Is there anything else about spirituality you would like to talk about?

10. After talking about these things, are there any changes or actions that would make things better?

(4) How much time will the study take?

The interviews will be between 30 and 40 minutes in length.

(5) Can I withdraw from the study?

Participation is completely voluntary - you are not under any obligation to consent and - if you do consent - you can withdraw at any time without affecting your relationship with VALID or the organisations with which you are associated, or with The University of Divinity.

You do not have to discuss any topic you are uncomfortable with and you may leave the interview at any time if you do not wish to continue. In such an event, any content of the audio recording relating to you will not be included in the study.

It is very unlikely, but if you get upset during an interview you can contact either Zoe Broadway or Rick Ruiu at VALID on 03 94164003 or 1800 655 570 (rural Victoria only). If needed Zoe or Rick will help you find the best person to talk further with and that might include Lifeline on 131114.

(6) Will anyone else know the results?

All study results will be strictly confidential. In addition to the written thesis, the researcher plans to share the results of the study with government as well as select advocacy and human service organisations. Results may be submitted for publication, and presented at select meetings and conferences. Individual participants will not be identifiable in any reports or presentations.

(7) Will the study benefit me?

It is hoped you will enjoy talking about your experience, but there is no guarantee or promise that you will receive any benefits from the study.

(8) Can I tell other people about the study?

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Yes

(9) What if I require further information about the study or my involvement in it?

When you have read this information, if you have any questions you can contact Zoe Broadway or Rick Ruiu at the VALID office on 03 9416 4003 or 1800 655 570 (rural Victoria only).

If you wish to participate in the research please sign the Participant Consent Form (or the Easy English version if you prefer) within two weeks of receiving this letter. It is also possible either Zoe or Rick will follow up with you to assist if needed. A stamped envelope is included for you to return the forms to VALID.

After you return the Participant Consent Form contact will be made with you by the researcher to arrange an interview.

Any questions regarding this project may be directed to the University of Administration (03) 98533177, or the Supervisor, Dr Alan Niven 0425764462.

(10) What if I have a complaint or any concerns?

If you have any complaints or queries that the researcher has not been able to answer to your satisfaction, you may contact the University of Divinity’s Director of Research: phone 03 98533177, email [email protected]

This information sheet is for you to keep

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359 Appendix 7: Participant Information Statement – Easy English Version

Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

PARTICIPANT INFORMATION STATEMENT

(1) What is the study about?

As you probably know, there are adults with an intellectual disability who are interested in spirituality and religion. VALID has agreed to me talking with people who go to VALID activities and who are interested to talk about this part of their life. This study is about finding out what life is like for you now and how things might be improved.

To do this, some things I would like to talk with you about are:

• What your life is like now • What you believe in • What is most important to you • What the word God means to you • Anything else about your spirituality you would like to talk about

(2) Who is carrying out the study?

Andy Calder from Melbourne’s University of Divinity is doing the study.

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(3) What does the study involve?

I would like to talk with adults over 18 years of age with an intellectual disability. You need to understand what the interviews are about and be able to legally sign the Consent Form. I have 10 questions to talk about what spirituality or religion might mean to you. I want to learn if it is important for you and why. I would like to interview you to help me find this out. An interview is someone talking to you and asking you questions and you answering them.

To help me remember what you say, I would like to tape record the interview. If you don’t want what you say to be recorded, then you can tell me and I will not record it. If you want to take part, but don’t want what you say to be recorded, then that’s ok too. You can tell me, and I will not record anything you say.

Of course, you don’t have to answer any questions I ask you that you don’t want to answer. And nobody except me will know what you said in the interview.

(4) How much time will the study take?

One, maybe two interviews, should take 30-40 minutes of your time.

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(5) Can I choose whether I take part in the study, or not?

• You can choose whether you want to take part in the study or not.

• If you do not want to be involved, that’s ok, it’s totally up to you! But if you do want to be involved, whatever you tell me will be private. I will not tell anybody else what you say to me.

• It’s ok if you want someone you trust to support you during an interview.

• You can stop taking part in the study at any time. If you stop taking part in the study, your relationship with any service you use will not change. Nor will your relationship with the University change. If you get upset you can talk with either Zoe or Rick at VALID, and if you need to talk further about what upsets you, they will help find the best person to talk with.

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• If you stop taking part in the study, all the information you give will not be used and will be destroyed.

(6) Will anyone else know the results?

Whatever you tell me will be private. Only Andy will know what you say. Andy will not tell anybody else what you say to me. In any reports about the study, individual people will not be able to be identified. All aspects of the study, including results, will be strictly confidential and only Andy will have access to information on participants.

(7) Will the study benefit me? Taking part in the study will give you the opportunity to tell me what life is like for you. As we talk about your spirituality or religion or faith it will help me learn about how your life is now. It will also help to understand how to better support people with disabilities with their spiritual life.

(8) Can I tell other people about the study?

Yes, you can tell other people about the study.

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(9) What if I need more information?

When you have read this information, you can talk to Rick or Zoe at VALID to answer any questions you may have. If you would like to know more at any stage, please feel free to phone Rick or Zoe on 03 9416 4003 or 1800 655 570 (rural Victoria only).

(10) What do I need to do if I would like to have an interview with Andy?

You need to talk with Rick or Zoe at VALID who will give you a Permission Form to sign and send it back to VALID in the next 2 weeks using the envelope.

If chosen, you are agreeing that Andy can make contact with you to organise one or two interviews.

(11) What if I have a complaint or concerns?

If you have any complaints or queries that the researcher has not been able to answer to your satisfaction, you may contact the University of Divinity’s Director of Research: phone 03 98533177, email [email protected]

This information sheet is for you to keep

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364 Appendix 8: Participant Consent Form – Easy English Version

PARTICIPANT CONSENT FORM – EASY ENGLISH version

Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

I, ______(PRINT NAME) Consent to – (say yes to) take part in this study, if selected.

This means I agree to talk with Andy Calder who is doing the study. He will talk with me about my life, what I believe and my thoughts and feelings about spirituality and religion. Some things he might talk with me about are:

• What my life is like now • What I believe in • What is most important to me • What the word God means to me, if anything • Anything else about my spirituality I would like to talk about

I also agree to the following list: • It is ok to be recorded and have what I say written down

• I know it will be kept safely and is private

• I know that what I say will go into a report

• I know that I won’t get anything for taking part in the research except for a conversation

Jan e • I know that I can stop taking part at any time

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• I do not have to answer all the questions

• I agree Andy can contact me to make a time for an interview

• I can have someone I trust to support me during the interview

• I can also talk to someone who supports me if I need to after the interview

• That is all I am saying I will take part in

Sign your name here:

Write your address and/or phone number here:

Write the date here:

IF REQUIRED:

I, ...... (PRINT FULL NAME) (person signing at your direction) state that:

(a) I am the person signing at the direction and in the presence of

……………………………………………(PRINT NAME) as he/she is unable to sign.

(b) I am at least 18 years old.

(c) I believe that………………………………………(PRINT NAME) understands the nature of this research project and consents to being involved in it.

I would like Andy to send an Easy Read copy of the interview(s) when it is ready. Please tick the box.

My address is ______

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366 Appendix 9: Revocation of Consent – Easy English Version

REVOCATION OF CONSENT – EASY ENGLISH VERSION

Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

I, ______Take back my consent to – (do not say yes anymore)

take part in this study with Andy Calder from the University of Divinity.

Sign your name here:

Write your name here:

Write the date here:

367 Appendix 10: Sorry Letter

Investigating the spirituality of adults with an intellectual disability: seeking a voice within policy and practices of human services in Victoria, Australia.

Date

Dear…………………………………………….

Thank you very much for returning the Consent Form for the study I am doing with people at VALID.

Unfortunately I was not able to interview you because so many people were interested.

I hope this has not been disappointing for you.

If you are upset, please make contact with either Rick Ruiu or Zoe Broadway at VALID on 94164003.

Best wishes

Andy Calder

368 Appendix 11: Newsletter Article for VALID Networks

Newsletter article for VALID networks Hello, my name is Andy Calder and you might remember me from last year when I talked about spirituality at the network meetings. I am now doing a study with the University of Divinity and want to talk with people who are interested in spirituality, faith or religion. VALID has agreed to support me to talk with people who go to VALID activities. This study is about finding out what life is like for you now and how things might be better. I am definitely not trying to change your beliefs.

To do this, some things I would like to talk with you about are: • What your life is like now • What you believe in • What is most important to you • What the word God means to you, if anything • Anything else about your spirituality you would like to talk about.

Please talk with Rick, Zoe or Jon at VALID on 94164003 if you want to know more about having a talk with me about

this.

369 Appendix 12: VALID network meetings 2014

AN INVITATION!!

Hello, my name is Andy Calder and you might remember me from last year when I talked about spirituality at the network meetings.

I am doing a study with the University of Divinity and want to talk with adults who are interested in spirituality, faith or religion.

VALID has agreed that I can talk with people who go to VALID activities. The study is to find out what life is like for you now and how things might be better. I am definitely not trying to change your beliefs.

370 In the study, there are 10 questions I would like to talk with you about, including: n What your life is like now n What you believe in n What is most important to you n What the word God means to you, if anything n Anything else about your spirituality you would like to talk about.

What next if you are interested?

Ask Rick, Zoe or Jon today for an Easy English Information ‘Pack’, which includes an Easy English Consent Form. When you are clear about the information, and you want Andy to know you are interested, sign and date the Consent Form.

A person called an agent, who you trust, can sign for you so long as they know you understand and agree. You can either give the Consent Form today to Rick, Zoe or Jon, or send it to VALID in the next 2 weeks.

371 n If I am selected for one or two conversations what do I know I am agreeing to?

I know our talk will be recorded and written down I know my information will be kept safe and it is private

I know that I won’t get anything for taking part in the research except for a conversation with Andy I know that Andy is writing a report but my name will not be mentioned in it

I know that I can stop taking part at any time

I know I do not have to answer all the questions

n I also know………….

I know I can have someone I trust to support me during the conversation, and any conversation goes for 40 minutes only

I know I can also talk to someone who supports me (staff member, family or friends) if I need to after a conversation with Andy

I know that when I (or my agent) sign and date the Consent Form (to say YES) Andy can contact me to make a time for a conversation

372 THANKS for thinking about this Invitation

If you are interested let Rick, Zoe or Jon know now, collect the Easy English Information ‘Pack’ which includes the Consent Form. Either give the Form to them today or send it to VALID in the next 2 weeks using the free envelope.

373 Appendix 13: Register of ‘Packs’

Spirituality Research – Andy Calder - 2014

Record of ‘Packs’ (Participant information Statement and Consent Forms) distributed to:

Name Address Phone contact Date given Support person Support person’s contact Network/ or posted name? (if needed) details Group

374 Appendix 14: VALID conference feedback 2015 and 2016

Having a Say Conference

VALID February 2015/16

Spirituality – who gives a toss?

Presenter Andy Calder

n Introductions/Welcome

n Some talk about Faith and Spirit

n Spirituality Project and VALID

375 What does faith mean?

You might read religious stories

What does faith mean?

You might join in religious festivals or services

376 What does faith mean?

You might pray or meditate

I talked with people in VALID about 8 questions. Firstly, people in the Self-Advocacy network, and then 14 people from the VALID network meetings agreed to talk with me. Each conversation lasted about 40 minutes. The 8 questions were:

377 1. What is spirituality?

Prayer/talking with God as friend. Spirit helping us. Being part of a group of people who they like being with (eg at Church).

2. What makes you feel good about yourself? (value)

Everyone talked about activities and relationships that made them feel good (family, staff, friends)

Helping other people was important

Having a connection with God or spirit

378 3. What do you like best about your life? (meaning)

Doing the things/activities that are on offer

Being connected to family, friends and carers

Accepting myself as I am (“I love having Aspergers”)

4. Are friends important to you? Why? (connectedness)

Almost everyone said YES Get to do things together, care for each other, learn from each other Some people said they would like more friends

379 5. What do you want to do with your life? (hope)

Individual dreams (be a singer, travel, new car, be a great aunty, meet politicians, make the world a kinder place)

3 people talked of either getting married or having a girlfriend.

6. Do you think there is a God?

Almost all people thought so, with 3 saying it is very hard to understand or really know

5 people talked about family members or friends who had died, and that they felt sad

380 7. Why do you think you are in the world? (identity and purpose)

Half the people had positive feelings about being connected with others: supporting or being supported

A number of people found it a difficult question to answer

Two had very clear answers, and another two said “I don’t know”

8. Do you like being in nature? (environment)

10 people said it gave them pleasure

5 people said it connected them with God in some way

One person was afraid in nature, and another said it makes them feel younger.

381 Thanks for coming.

If you like, I would be happy to talk with you more about this!

Mayer-Johnson LLC gave permission for the Picture Communication Symbols © 1981 – 2010 to be used in the Easy English document from 2010.

382 Appendix 15: Feedback 1 – Self-Advocacy

Self-Advocacy Network Meeting

VALID 26 May 2015

Spirituality – what did people say about it? Interview findings

Presenter Andy Calder

n Introductions

n Spirituality PhD Project with VALID

383 What does faith mean?

You might read religious stories

What does faith mean?

You might join in religious festivals or services

384 What does faith mean?

You might pray or meditate

I talked with people in VALID about 8 questions. Firstly, people in the Self-Advocacy network, and then 14 people from the VALID network meetings agreed to talk with me. Each conversation lasted about 40 minutes. The 8 questions were:

385 1. What is spirituality?

Prayer/talking with God as friend. Spirit helping us. Being part of a group of people who they like being with (eg at Church).

2. What makes you feel good about yourself? (value)

Everyone talked about activities and relationships that made them feel good (family, staff, friends)

Helping other people was important

Having a connection with God or spirit

386 3. What do you like best about your life? (meaning)

Doing the things/activities that are on offer

Being connected to family, friends and carers

Accepting myself as I am (“I love having Aspergers”)

4. Are friends important to you? Why? (connectedness)

Almost everyone said YES Get to do things together, care for each other, learn from each other Some people said they would like more friends

387 5. What do you want to do with your life? (hope)

Individual dreams (be a singer, travel, new car, be a great aunty, meet politicians, make the world a kinder place)

3 people talked of either getting married or having a girlfriend.

6. Do you think there is a God?

Almost all people thought so, with 3 saying it is very hard to understand or really know

5 people talked about family members or friends who had died, and that they felt sad

388 7. Why do you think you are in the world? (identity and purpose)

Half the people had positive feelings about being connected with others: supporting or being supported

A number of people found it a difficult question to answer

Two had very clear answers, and another two said “I don’t know”

8. Do you like being in nature? (environment)

10 people said it gave them pleasure

5 people said it connected them with God in some way

One person was afraid in nature, and another said it makes them feel younger.

389 n Some comments

n “Otherwise without friends, that‘s not living it’s just mere existence”

n “Well I think we all need to belong somewhere…and that also includes any folk with any sort of disability…there are some churches around that are very welcoming………and there are those which outright just discriminate….like some of your bigger style churches that have to have everything perfect….I don’t think that’s OK. And it’s something that needs to be dealt with…in some way, shape or form”

n “I’m here for the same reason all of us are. I mean like we have come here to….. seek……that someone we should have found a long time ago”.

and a few more……………

n “I know I’m not by myself. I mean……..like we are all part of it”.

n “God created me with Asbergers to be clever with numbers and religion”.

n “I think a few of these organisations can do more to advocate in this area……...step in a bit more into this area to make sure that people with a disability get that side of that particular aspect gets looked after a bit more…because at the moment there is very little…and it could be a lot better”.

390 n Summary of Themes

n 1. Importance of friendship (with others and with God) n 2. Importance of different expressions of spirituality n 3. Importance of Relationships and family – doing things with others n 4. Personal happiness and care.

391 Appendix 16: Validation 1 – Discussion of Primary Data

392

393 Appendix 17: Feedback 2 – Self-Advocacy

Self-Advocacy Network Meeting

VALID 31 May 2016

Spirituality – what did people say about it? Interview findings

Presenter Andy Calder

n Introductions

n Spirituality PhD Project with VALID

394 What does faith mean?

You might read religious stories

What does faith mean?

You might join in religious festivals or services

395 What does faith mean?

You might pray or meditate

I talked with people in VALID about 8 questions. Firstly, people in the Self-Advocacy network, and then 14 people from the VALID network meetings agreed to talk with me. Each conversation lasted about 40 minutes. The 8 questions were:

396 1. What is spirituality?

Prayer/talking with God as friend. Spirit helping us. Being part of a group of people who they like being with (eg at Church).

2. What makes you feel good about yourself? (value)

Everyone talked about activities and relationships that made them feel good (family, staff, friends)

Helping other people was important

Having a connection with God or spirit

397 3. What do you like best about your life? (meaning)

Doing the things/activities that are on offer

Being connected to family, friends and carers

Accepting myself as I am (“I love having Aspergers”)

4. Are friends important to you? Why? (connectedness)

Almost everyone said YES Get to do things together, care for each other, learn from each other Some people said they would like more friends

398 5. What do you want to do with your life? (hope)

Individual dreams (be a singer, travel, new car, be a great aunty, meet politicians, make the world a kinder place)

3 people talked of either getting married or having a girlfriend.

6. Do you think there is a God?

Almost all people thought so, with 3 saying it is very hard to understand or really know

5 people talked about family members or friends who had died, and that they felt sad

399 7. Why do you think you are in the world? (identity and purpose)

Half the people had positive feelings about being connected with others: supporting or being supported

A number of people found it a difficult question to answer

Two had very clear answers, and another two said “I don’t know”

8. Do you like being in nature? (environment)

10 people said it gave them pleasure

5 people said it connected them with God in some way

One person was afraid in nature, and another said it makes them feel younger.

400 n Some comments

n “Otherwise without friends, that‘s not living it’s just mere existence”

n “Well I think we all need to belong somewhere…and that also includes any folk with any sort of disability…there are some churches around that are very welcoming………and there are those which outright just discriminate….like some of your bigger style churches that have to have everything perfect….I don’t think that’s OK. And it’s something that needs to be dealt with…in some way, shape or form”

n “I’m here for the same reason all of us are. I mean like we have come here to….. seek……that someone we should have found a long time ago”.

and a few more……………

n “I know I’m not by myself. I mean……..like we are all part of it”.

n “God created me with Asbergers to be clever with numbers and religion”.

n “I think a few of these organisations can do more to advocate in this area……...step in a bit more into this area to make sure that people with a disability get that side of that particular aspect gets looked after a bit more…because at the moment there is very little…and it could be a lot better”.

401 n Summary of Themes

n 1. Importance of friendship (with others and with God)

n 2. Importance of different expressions of spirituality

n 3. Importance of Relationships and family – doing things with others

n 4. Personal happiness and care.

What do you think about these themes?

n Agree?

n Disagree?

n Other ideas or thoughts?

402 Where to from here?

If VALID’s Self-advocacy Network thinks this part of people’s lives is important and needs to be advocated for further, what might the next step be?

Might VALID consider a statement from VALID’s Network that recognises its importance? If so, one example comes from TASH in America which says:

‘TASH, an international advocacy association of people with disabilities, their family members, other advocates and people who work in the disability field, believes that all people with disabilities have the right to spiritual expression including the reflection upon and sharing of spiritual purposes for their lives. TASH further supports the right of individuals with disabilities to participate in spiritual expression or organized religion as they so choose and promotes the provision of any and all supports needed by people with disabilities to so participate’.

Might we together develop something similar?

Thanks for your participation.

Mayer-Johnson LLC gave permission for the Picture Communication Symbols © 1981 – 2010 to be used in the Easy English document from 2010.

403 Appendix 18: Feedback 2 re Statement

Validation 2 Appendix 18

May 31, 2016 feedback session with Self Advocacy Network

Discussion held 31 May, 2016 at VALID’s premises in Fitzroy. 12 VALID self- advocates and 3 staff members present. Of these 12 self-advocates 2 had been participants (2/14) in the original research interviews. Presentation of the findings (Powerpoint Easy English version – Appendix 17) took place for feedback and further community development with a view to developing a ‘Statement of Spirituality’.

Owing to unexpected time constraints 30 minutes only were allocated for this discussion. Weight was given by respondents to questions 5 and 7, to the summary of 4 themes and the ‘Agree/Disagree?’ slide: responses were as follows:

5. What do you want to do with your life? (hope)

One person raised the issue of work being important.

7. Why do you think you are in the world? (existential)

“I want to teach others about disability. That God is not only interested in normal people – what about people outside the square? I want to change people’s lives.”

“I died 40 years ago in an accident. Have an ABI and now my purpose is to help others understand head injury by talking to school groups.”

“When I was young the priest said I could not be baptised because I had a disability.”

“People with disabilities need advocacy.”

“How come the priest needs a new car every year?”

Slide with 4 Themes

Mention of friendship’s importance received much affirmation. Also the theme of happiness. One person said they love going to church.

Agree/Disagree slide?

Helping others was most important – gives a lot of satisfaction.

One person talked about people in the wider community getting scared as they might ‘catch’ disability.

Development of a ‘Statement of Spirituality’

It was agreed by all present that this was an important thing to be done and the researcher was requested to develop a draft Statement for consideration by the Reference Group.

404 Appendix 19: Faith Communities Council of Victoria: Statement on People with Disability 2016

13th of November, 2016

Statement concerning People with Disability On the eve of International Day of People with Disability, December 3, the Faith Communities Council of Victoria has issued the following statement:

As representatives of many religious traditions and different faiths, we stand together in affirming that all people have gifts and contributions that enliven and strengthen the community to which they belong and seek to ensure that people with disabilities have equal opportunity to participate in the faith community of their choice.

The Council recognises the United Nations’ Convention on the Rights of People with Disabilities (2006) which states discrimination should not occur on the basis of religion amongst other factors. Furthermore, the Australian Disability Discrimination Act 1992, (DDA) makes it unlawful to discriminate against people on the basis of disability.

For people with disabilities, and their families and carers, participation and belonging have at times been problematic because of a range of architectural, cultural and theological factors. People with disabilities request the following from faith communities: (i) their physical and sensory needs are addressed in order to be present at times of worship and social activity (ii) they experience a sense of unconditional welcome and belonging and are not treated differently on account of disability and (iii) they be consulted as to their particular participation in the life of their faith community.

Across the state, the Faith Communities Council of Victoria shares the call that faith communities and faith leaders play their part in ensuring that people marginalised by disability experience a sense of welcome and social inclusion, based on the principles of justice, equality and love.

Faith Communities Council of Victoria (FCCV) is comprised of the following peak bodies: Baha'i Community of Victoria, Brahma Kumaris Australia, Buddhist Council of Victoria, Hindu Council of Australia (Vic), Islamic Council of Victoria, Jewish Community Council of Victoria, Sikh Interfaith Council of Victoria and Victorian Council of Churches.

405 Appendix 20: VALID Statement on Spirituality

VALID Inc 235 Napier Street Fitzroy Vic 3065 Telephone 03 9416 4003

VALID Statement on Spirituality

Statement of Purpose

Faith and spirituality is important Faith and spirituality to many people. provide positive supports to many Victorians. Many people with disabilities have not been given the chance to choose, talk or find out about The rights, needs and their own faith or spirituality. wishes of many people with disabilities, in regards to Faith and spirituality can mean their spiritual expression, different things to different people. have been largely overlooked or denied. For some people Spirituality can Spirituality is a very be formal important part of the following a religion, human condition. It is expressed uniquely, and it can be informal may be formal or informal, knowing who you are and individual or communal, what you believe in and maybe expressed through music, art, or it can be doing things with creativity, religion and/or others (communal). relationships. Going to a service - church, synagogue, mosque etc.

Victorian Advocacy League for Individuals with Disability Inc www.valid.org.au ABN: 94 976 328 100

406

For some people spirituality can be through music, art, mediation, prayer, religion and/or relationships

Rationale (reason for Statement of purpose)

The United Nations Convention The United Nations’ on the rights of People with Convention on the Rights Disabilities says people should of People with Disabilities not be treated differently (2006) recognises because of their religion. discrimination should not occur on the basis of many In Australia it is against the law to factors, religion being one treat people differently because of them. they have a disability

This law is called the Disability Within Australia the Discrimination Act 1992. Disability Discrimination Act 1992, (DDA) makes it This means that people with unlawful to discriminate disabilities have the right to: against people on the basis that they have or might Choose their faith and have a disability. spirituality

Participate in their faith and spirituality.

407

VALID supports a person’s right VALID supports an to choose and participate in their individual’s right to express own spirituality as long as it’s in a and have access to the respectful way. spirituality of their choice, provided it communicates This could be what they believe value and respect for all in, which religion they follow or people. Such spirituality the way they choose to live their may represent beliefs, life. definitions and expressions

VALID believes people with of a particular faith disabilities should be supported community or of a to participate in any activities particular way of life. that may be part of their faith or VALID, a state advocacy spirituality. association of people with disabilities, their advocates and people who work in the disability sector, believes that all people with disabilities have the right to spiritual expression of their choice, and that any necessary supports need to be provided for such participation.

408

Statement of Purpose

Faith and spirituality is important to many people.

Many people with disabilities have not been given the chance to choose, talk or find out about their own faith or spirituality.

Faith and spirituality can mean different things to different people.

For some people Spirituality can be formal following a religion,

it can be informal knowing who you are and what you believe in

409

or it can be doing things with others (communal). Going to a church, synagogue, mosque etc.

For some people spirituality can be shown through music, art, mediation, prayer, religion and/or relationships

Rationale (reason for Statement of purpose)

The United Nations Convention

on the rights of People with Disabilities says people should

not be treated differently because of their religion.

In Australia it is against the law to treat people differently because they have a disability

This law is called the Disability Discrimination Act 1992.

410

This means that people with disabilities have the right to:

Choose their faith and spirituality

Participate in their faith and spirituality.

VALID supports a person’s right to choose and participate in their own spirituality as long as it’s in a respectful way.

This could be what they believe in, which religion they follow or the way they choose to live their life.

VALID believes people with disabilities should be supported to participate in any activities that may be part of their faith or spirituality.

411