Enabling self-identity revisioning through portraiture, for people living with life threatening and

338 Pages·2017·18.45 MB·English

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Enabling self-identity
revisioning through
portraiture, for people living
with life threatening and
chronic illnesses: paint me
this way!
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Additional Information:
• A Doctoral Thesis. Submitted in partial fulfilment of the requirements
for the award of Doctor of Philosophy of Loughborough University.
Metadata Record: https://dspace.lboro.ac.uk/2134/19522
Publisher: (cid:13)c Susan M.D. Carr
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Please cite the published version.
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.

Title: Enabling Self-Identity Revisioning through Portraiture, for people living with
Life Threatening and Chronic Illnesses: Paint me this way!

Doctoral Thesis

By Susan M. D. Carr ©

Submitted in partial fulfilment of the requirements for the award of
Doctor of Philosophy
by
Loughborough University

October 2015

Figure 1. Bohemian Rhapsody, by Susan Carr, 2011 (co-designed by Rose).

The healing power of art is not a rhetorical fantasy … I know no pain that art
cannot assuage … [it] cuts through noise and hurt, opens the wound to clean it,
and then gradually teaches it to heal itself. (Winterson 1995: 156-7).
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.

Publications to date arising from this PhD project:

Carr, Susan, M, D. (2011b) Reflecting identities: Using portraiture with people
suffering from life threatening illnesses. [Poster abstract] British Medical Journal
Supportive Palliative Care 2011;1:2 236.
http://spcare.bmj.com/content/1/2/236.1.full.pdf+html?sid=b4b81475-1720-4ede-
b83e-0e01fb0ef10e

Carr, Susan, M, D. (2014) Revisioning Self-Identity: The role of portraits,
neuroscience and the art therapist’s ‘third hand’. The International Journal of Art
Therapy, Vol. 19, Issue 2, 54-70, 2nd July 2014.
http://dx.doi.org/10.1080/17454832.2014.906476

PR or PRs = Patient-Researcher/s ATR = Artist-Th1e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
Acknowledgements

I begin by thanking Eileen and Hugh for being the inspiration for this project and for
all the patients and staff at the hospice where I work for their kind advice, enthusiasm
and support.

Particular acknowledgements and thanks go to my three supervisors. During the first
two years of this project Professor Alan Radley’s clear vision on ‘worlds’ and ‘works’
of illness provided a foundation for my ideas for this project, combined with the
creative knowledge and enthusiasm from Alastair Adams. Alastair, whose
encouraging guidance made it possible for me to overcome my anxieties about
painting portraits, and his knowledge of, talent for and experience in painting portraits
was invaluable to the process. My third supervisor Professor Sarah Pink, is thanked
for her innovative suggestions and experience in ethnography and visual & sensory
research methods, taking me into unthought-of areas of expertise and development. I
also thank my drama therapist/supervisor Rachel, for her ongoing belief in this project
and in me.

I thank my parents Mary and David for all their support and encouragement and
financial assistance during this time. To my sons James and Matthew, I apologise
sincerely for becoming ‘the most boring person in the world’ (a prerequisite for PhD
students I am told) and for understanding my ongoing commitment to this project. To
my partner Terry I say a special thank you for being my ‘rock’ who is … naturally
‘worth his weight in gold!’

This project is dedicated to the patient-researchers who were my collaborators
throughout, with my most special thanks and appreciation going to Rose, Hilary, Peter
(& Mark), Bill, Susan, Norma, Paul, and their families, who willingly gave their time,
and their stories of self-identity and illness, to be an inspiration and help to others.
The delightful combination of courage, humour, wisdom and inspiration they brought
to the project, is reflected through their portraits, collages and prose poems and will
be with me always ... and hopefully through exhibitions and publications, with many
others.

Now the portraits must ‘go and do their work’ … as Pinknola Estes once said ‘art is
not just for oneself, not just a marker of one’s own understanding. It is also a map for
those who follow after us’ (1992:13).

Susan Carr
October 2014

PR or PRs = Patient-Researcher/s ATR = Artist-Th2e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.

Table of Contents
Certificate of Authorship .............................................. Error! Bookmark not defined.
Publications to date arising from this PhD project: ................................................. 1

Acronyms & Definitions ............................................................................................ 10

Abstract ....................................................................................................................... 11

The Prequel: Eileen’s Legacy ................................................................................... 12

1.0 Chapter 1. Introduction: A phenomenological approach to revisioning

self-identity through portraiture, ‘paint me this way!’ .............................. 16

1.1 Research questions ............................................................................................ 18

1.2 Aims and Objectives of the Study .................................................................... 19

1.3 Calls for further research in the fields of Art Therapy and LT&CIs .......... 20

1.4 Original Contributions to Knowledge ............................................................. 21

1.5 Context: Setting the scene ................................................................................ 22

1.6 Revisioning self-identities: Introduction to key theories and concepts used.

.......................................................................................................................... 23

1.6.1 What are self-identities and disrupted self-identities? ................................ 23

1.6.2 What are Portraits? ....................................................................................... 29

1.6.3 Identity Formation: Mirroring and Attunement .......................................... 32

1.6.4 Reversing the terms of engagement: Invoking Edith Kramer’s concept of

the art therapist’s ‘Third Hand’ (Kramer 1971, 1986, 2000) .................... 33

1.6.5 A Phenomenological Approach to Art Therapy and Illness ...................... 36

1.7 Unhomelike-being-in-the-world: The Cultural Milieu .................................. 39

1.7.1 Problematised Bodies & Gender .................................................................. 39

1.7.2 The Problem of De-personalised Care ......................................................... 41

1.7.3 The Problem of ‘Being-Towards-Death’ (Heidegger 1962) ....................... 42

1.8 Summary and signposting for the following chapters ................................... 43

2.0 Chapter 2. Literature Review: Focusing the Gaze ......................................... 46

2.1 Portraits as Embodied Visual Portrayals of Self-identity ............................. 47

2.2 Art Therapy, Portraiture and Palliative Care ............................................... 51

2.3 Artists who have painted people living with LT&CIs ................................... 57

2.4 Portraiture, Photography & LT&CIs ............................................................. 67

2.4.1 Phototherapy and autopathographic photographic self-portraiture ........... 68

2.5 Collages & Prose Poems, self-identity, LT&CIs ............................................ 71

PR or PRs = Patient-Researcher/s ATR = Artist-Th3e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
2.6 Summary ............................................................................................................ 72
3.0 Chapter 3. Priming the Canvas: Development of Research Methods .......... 74

3.1 Introduction ....................................................................................................... 74

3.2 The Patient-Researcher (PRs) sampling process. .......................................... 75

3.3 Ethical considerations ....................................................................................... 78

3.4 Research Methods ............................................................................................. 82

3.4.1 Phase 1: Emotional Distancing, Elicitation Tasks, and Active

Documentation Sketchbooks (ADS) ............................................................. 82

3.4.2 Phase 2: Collage & Prose Poems, Co-designing the Portraits/creating a

statement of intention and the Portrait Reference Album (PRA). ............ 86

3.4.2.1Collage as response art .................................................................................. 86

3.4.2.2 Prose Poems as stories of self-identity reduced to ‘essences’ .................... 87

3.4.2.3 Co-designing the Portraits: Creating a Statement of Intention, Portrait

Reference Album (PRA) & Appropriation Art ........................................... 88

3.4.4 Phase 3: Painted portraits as ‘third hand’ intervention and research

method ............................................................................................................. 90

3.4.5 Semi-structured End of Project Interviews (EPIs) ..................................... 93

3.5 Phase 4: Methods for Visual Analysis ............................................................. 95

3.5.1 Arts-based Life/World Phenomenological Analysis ................................... 95

3.5.2 Phase 5: Voice Centred Interpersonal Analysis .......................................... 99

3.5.3 Multiple case-study design .......................................................................... 101

3.6 Reliability and Validity in Phenomenological Research ............................. 103

3.7 Summary .......................................................................................................... 106

4.0 Chapter 4. ‘Paint me this way’: The PRs lived experiences of portraiture

........................................................................................................................ 108

4.1 The Participants: Patient/Researchers (PRs) ............................................... 108

4.1.1 Rose ............................................................................................................... 108

4.1.2 Hilary ............................................................................................................ 109

4.1.3 Peter (& Mark) ............................................................................................. 110

4.1.4 Bill .................................................................................................................. 111

4.1.5 Susan ............................................................................................................. 112

4.1.6 Norma ............................................................................................................ 113

4.1.7 Paul ................................................................................................................ 113

4.1.8 My own reflexive statement: Susan Carr Artist/Therapist/Researcher . 114

4.2 Findings ............................................................................................................ 114

4.3 Increasing the PRs creative capacity to adapt to illness ............................... 118

PR or PRs = Patient-Researcher/s ATR = Artist-Th4e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
4.3.1 Adaption through transforming meanings & changing perspectives: re-
imagining and revisioning self-identity. ..................................................... 118

4.3.2 Humour: An adaptive and imaginative way of being-in-the-world. ....... 124

4.3.3 Adaptive dualities: creating emotional distance and connection ............ 128

4.3.4 Adaption through mourning losses: Learning to live with Being-towards-

death .............................................................................................................. 130

4.3.5 Adaption through increased Flexibility and Agency, and Changes in

Perception of ‘Control’. ............................................................................... 143

4.4 Summary .......................................................................................................... 151

5.0 Chapter 5. Portraits Making Meaning: increasing the lived experience of

homelike-being-in-the-world. ....................................................................... 152

5.1 ‘Making Special’, Making meaning: Spirituality & ‘Souls’, Ritual & Myth

........................................................................................................................ 152

5.3 Portraits of Belonging and Re-membering: Linking past, present and

future self-identities. ................................................................................... 163

5.4 Embodied empathy: Increasing the lived experience of a worthwhile &

valuable self/life ............................................................................................ 176

5.5 Legacy & Temporality: Immortalizing the sitter/Cheating death ............. 184

5.6 Summary .......................................................................................................... 191

6.0 Chapter 6. Mirroring and Attunement through Portraiture:

Intersubjective and Symbolic ways of knowing, being and relating. ....... 194

6.1 Intra-subjective validation of self-identity: Portraits PRs needed to see ... 196

6.2 Intersubjective validation of self-identity: Portraits PRs needed others to see

........................................................................................................................ 204

6.3 Portraits, collages & prose poems as ‘containers’ of duality: holding hope

and despair .................................................................................................... 211

6.4 Portraits of transformation: attaching aesthetic resonance ........................ 223

6.5 Summary .......................................................................................................... 229

7.0 Chapter 7. Drawing Conclusions: Portraits as unique ways of knowing and

being known. ................................................................................................. 231

7.1 Summary of Thesis ......................................................................................... 231

7.2 Findings ............................................................................................................ 233

7.2.1 Themes from the analysis ............................................................................ 234

7.2.2 Master Theme 1: Increasing the PRs lived experience of their creative

capacity to adapt to illness. ........................................................................... 234

7.2.3 Master Theme 2: Portraits Making Meaning: increasing the lived

experience of homelike-being-in-the-world and ontological security. ...... 235

7.2.4 Master Theme 3: Mirroring and Attunement through Portraiture:

Intersubjective and Symbolic ways of knowing, being and relating. ....... 237

PR or PRs = Patient-Researcher/s ATR = Artist-Th5e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
7.3 Answering the research questions ................................................................. 238
7.3.1 What are the PRs lived experiences of portraiture as a ‘third hand’ art

therapy intervention? .................................................................................. 239

7.3.2 What role does mirroring and attunement, reflected within the portraits

play in the process of revisioning self-identities? ...................................... 241

7.3.3 What role do portraits play in enabling meaning making and the

exploration of existential questions around ‘being-towards-death’? ...... 242

7.3.4 What are the PRs experiences of the collaborative nature of this project?

........................................................................................................................ 243

7.4 Original Contributions to Clinical Theory Development ............................ 245

7.4.1 Who makes the artwork in Art Therapy? ................................................. 246

7.4.2 The universal requirement for confidentiality irrespective of context. .. 247

7.4.3 The dys-engagement with aesthetics as a healing force? .......................... 248

7.5 Original contributions to knowledge ............................................................. 248

7.6 A Final Reflection on Portrait Therapy: Knowing the self through being

known ............................................................................................................ 250

7.7 Limitations to the study and implications for future research and art

therapy training. .......................................................................................... 252

7.7.1 Limitations to the study ............................................................................... 252

7.7.2 Implications for Future Research ............................................................... 253

7.7.3 Implications for Art Therapy Training ..................................................... 255

7.8 Afterward: Reflecting on experience .............................................................. 256

Appendix 1: NRES Letter of Ethical Approval. ................................................... 259

Appendix 2: Letter of Invitation to Participants .................................................. 262

Appendix 3: Letter of Invitation to Participants .................................................. 263

Appendix 4: Participant Informed Consent Form ............................................... 270

Appendix 5: Letter to PRs GP’s informing them of their participation in the

project. .......................................................................................................... 272

Appendix 6: Permission to use voice recording Form .......................................... 273

Appendix 7: Permission to use Participant’s first name Form ............................ 274

Appendix 8: Art Therapy Practitioner Insurance (including research) renewed

yearly. .......................................................................................................... 275

Appendix 9: Semi-structured End of Project Interview Questions ..................... 276

Appendix 10: Portrait Reference Album List ....................................................... 277

Appendix 11: Permission to use images of other artist’s work. ........................... 280

Appendix 12: Susan Carr, reflexive and reflective statement ............................. 282

References & Bibliography ..................................................................................... 283

PR or PRs = Patient-Researcher/s ATR = Artist-Th6e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
Table of figures

Bohemian Rhapsody,
Eileen Aged 10 years.
Figure 1. Eileen by Susan Carr, 2011 (co-designed by Rose). ............ 0
Figure 2. Hugh ..................................................................................................12
Figure 3. Carry M bye TSuhsisa Wn Caayrr 2009. ......................................................................................13
Figure 4. Out o .f. .T...h..i..s.. .W....o..r..l..d..........................................................................................................14
Figure 5.Robin and Mardi by Michele Angelo Petrone, 1994. ..................................16
Figure 6. Barry C by John D Edwards, 1999. ...................................................26
Figure 7. Evelyn by Mark Gilbert, 2007, (Portraits of Care Project). ......58
Figure 8. Steve by Mark Gilbert, 1999, (Saving FaceJsu Pliaroject).................................62
Figure 9. ‘Dead Mbya nH ePaotshin Rgo’ sPsoerltlri,a 1it9 o9f7 P. .h..i.l..i.p... .L..e..d...b..u...r..y....................................................64
Figure 10. Inclus bioyn A/Enxtoclnuisai oRno cllrsi,t 2er0i0a7 t.a blFei.gure 11. by Antonia Rolls .........65
Figure 12. , by David Fisher, 2009. ...66
Figure 13. ......................................................................77
Figure 14. Confidentiality ...........................................................................................................80
Figure 15. Exploitation ................................................................................................................80
Figure 16. DBuutatlo-Rn o&le L Cegoon fTliacstk/s‘I nprsoidtoerc’o rl e&s eraeracsho.n ..i.n...g........................................................80
Figure 17. EPthhoictoal E CloicnitsaidtieornatioAncst iwveit Dhionc uthmise nsttautdiyo n.. .S...k..e..t..c..h..b...o..o...k..s...p...r.o...t..o..c..o..l.. .&... ......81
Figurree a1s8o.n ing ......................................................83
Figure 19. Collages & Prose P &o ems Protocol and Reasoning
. Stat ..e..m....e..n...t.s.. .o...f. .I..n..t..e..n...t.i.o...n..,. .P...R...A... .&... .M....e..t..a..p...h..o..r.. .&.... .S..y..m....b..o...l.i.s..m................................84
Figure 20.. Painting the Portraits ...........................................86
Figure 21 EPI and PR Checking ............................90
Figure 22 Six steps for theArts-b .a..s..e..d... .L..i..f.e../..W.....o..r..l.d... .P...h..e..n...o..m....e..n...o..l.o...g..i..c..a..l.. .A..n...a..l..y..s..i.s........91
Figure 23. Voice Centred Interpe ..r..s.o...n..a...l. .A...n..a...l.y..s..i..s..................................................................93
Figure 24. Finlay’s (2011) F our ‘Rs’ of ‘Good’ Phenomenological Research. ......98
Figure 25. Matrix of Themes Identified table .............................................................. 101
Figure 26. The Window & The Heart of the Home by Susan Carr (co-desig n...e..d... .b..y 1 03
FigurHei l2a7r.y ) ..................................................................... 117
Figure 28. A Proper Grandma
H .e..l.d... .b..y... .a..n... .A..n...g..e...l...................................................................................................... 120
Figure 29. Broken Lungs by Susan Carr .................................................................... 121
Figure 30. Pin Hole Camera by Susan Carr (co-designed by Hilary). ...................... 123
Figure 31. Can’t breathe by Susan Carr (Co-designed by Paul) ................................ 126
Figure 32. Mark, Charlie & Rubsyt ySusan Carr (Co-designed by Susan) ...................... 129
Figure 33. RIP Mark & Ru csotlylage by Susan Carr, 2011. .................................................. 133
Figure 34.‘ There’s Something abo buyt SMuasrakn, RCIaPr’r (co-designed by Peter) ............... 133
Figure 35. Peter & Mark in K ecnoyllaa ge by Susan Carr, 2011. .......................................... 134
Figure 36.At the Races by Susan Carr .................................. 136
Figure 37. Mother Walked out andb lye fStu msaen Carr (co-designed by Peter). ............ 136
Figure 38. Seven Holes ibny M Syu Hsaena rCta rr (co-designed by Peter). ................................. 137
Figure 39. Unwelcome Contradictions of Decaotllha gine Bbiyr tShusan Carr, 2012. ............... 138
Figure 40. My baby/My Self collage by Susan Carr, 2012. ............................. 139
Figure 41. by Susan Carr 1999....... 140
Figure 42. Back in that Box by Susan Carr & Norma .................................................... 142
Figure 43. Susan’s post-diagnosis button task ................................................................ 143
Figure 44. collage by Susan Carr, 2012. ........................................... 144

PR or PRs = Patient-Researcher/s ATR = Artist-Th7e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook
© Susan M. D. Carr, PhD Thesis, Loughborough University, October 2015.
Pin Hole Camera
The Swan Island Book
Figure 45. Paint me like a Pibcays Ssousan Carr (Co-designed by Susan) ....................... 145
Figure 46. I’ll give it a damn good b tyr yS usan Carr (co-designed by Susan) ............. 147
Figure 47. I Don’t Want to JustDis bapy pSeuasran Carr (co-designed by Rose) .............. 148
Figure 48. Held by an Angel collage by Susan Carr, 2012.......................... 149
Figure 49. My baby/My Self Collage by Susan Carr 2010. ................. 156
Figure 50. by Susan Carr (co-designed by Hilary) ....................... 157
Figure 51. North Bear by Susan Carr (Co-designed and co-created by
NormaM)y .. .G..u...n...g..a... .D...i.n............................................................................................................. 158
Figure 52. Sacrifice by Susan Carr (co-designed by Norma) ................................. 161
Figure 53. The Flying Ace bPye Sguassauns BCarirdrg, e201T2h. .e... .V..e...t.e..r..a...n.............................................. 165
Figure 54. by Susan Carr, 2012. ........................................................................... 165
Figure 55. Mentioned in D, espatches collag &e by Susan Carr (co-
designMeden btyio Bnieldl) i.n... .D...i.s..p..a...t..c..h..e..s........................................................................................ 167
Figure 56. Bohemian Rhapsody by Susan Carr, 2012. ........................... 168
Figure 57. by Susan Carr, 2012 (co-designed by Bill) . 168
Figure 58. The Paper Dress by Susan Carr (co-designed by Rose) ................... 169
Figure 59. English Gothic by SusanL iCttalrer S (ucsoa-nd,e Ssaigyninegd Gboyo Pdabuyle) t..o... .t.h...e.. .S..e..a...,. .B...e..i.n...g 1 71
FigurPea 6n0d.ora & The Library by Susan Carr (co-designed by Susan) ......................... 173
Figure 61. STuhsea Pno’sp pfoyu Fri eplodrtraits:
Paint me like a Pi cbays Ssousan Carr (co-designed by PR Susan). ................ 175
Figure 62.Bohemian Rhap sboyd ySusan Carr (co-designed by Rose) ............................ 177
Figure 63. by BSuoshaenm Ciaanrr R (hcaop-dsoedsiygned by Rose) .............. 177
Figure 64. by Susan Carr (co-designed by Rose) ................... 177
Figure 65. STihgen R laaningbuoawge S fnoark ‘elove’ & by Susan Carr (co-
designTehde b Pyo Rppoys eF)i e..l..d......................................................................................................... 178
Figure 66. , by Susan Carr (co-designed by Susan) ................. 179
Figure 67. Recovery positio nb y S usan Carr (Tcoh-ed Peosipgpnye Fdi eblyd Rose) ............................ 182
Figure 68. RTroaspep: Eedssences of self-identity found within the portraits. .................. 182
Figure 69. Virtual Paul Figure 70. ........................................ 183
Figure 71. There’s S ocomlleatghein bgy A Sbuosuatn M Caarrkr,, R20IP12............................................................. 186
Figure 72. by Susan Carr (co-designed by Paul) .................................... 187
Figure 73. Not Going Out by Susan Carr (co-designed by
Peter)A ..t.. .H...o...m....e.. ..................................................................................................................... 191
Figure 74. The Two Norm bays Susan Carr ............................................................................. 198
Figure 75. The Twob Fyr iSduassan Carr ........................................................................................ 199
Figure 76. The Poppy Field, P bayi nStu msaen l iCkaer ar (Pcioca-dsseos i&gn Beodh bemy Niaonr Rmhaa/pNsoodrtyh Bear)
(After by Frida Kahlo, 1939) ......................................................... 202
Figure 77. All I might be to do, by Susan
Carr (cAot- tdhees Riganceeds by Rose). .......................................................................................... 205
Figure 78. I climbed Mount Kilicmoallnajgaer oby Susan Carr .................................................... 206
Figure 79. Climbing Mt Kbyil iSmuasnanja Croa rr, (co-designed by Peter) ................................. 206
Figure 80. Broken Lungs by Susan Carr ................................................ 207
Figure 81. Flying Ace by Susan Carr (co-designed by Peter) ......... 208
Figure 82. All My Plates C baym Seu Csraans Chianrgr (Dcoow-dne signed by Paul) ................................. 209
Figure 83. by Susan Carr, 2011 (co-dePsaiginnte dm be yli kBeil la) P...i.c..a...s..s.o................. 210
Figure 84. collage by Susan Carr 2010. ......... 212
Figure 85. Detail of the canary in the cage, from by Susan
Carr 2011, (co-designed by Rose) ............................................................................... 213

PR or PRs = Patient-Researcher/s ATR = Artist-Th8e rapist-Researcher EPI = End of Project Interview
LT&CIs = Life Threatening & Chronic Illnesses ADS = Active Documentation Sketchbook