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Études at Play : Narrative Identity in Adolescents with Chronic Illness

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Études at Play : Narrative Identity in Adolescents with Chronic Illness Études at play: Narrative Identity in Adolescents with Chronic Illness in Contemporary Young Adult Literature Volume 1 Exegesis Pamela Jane Harvey Submitted in fulfilment of the requirements of the degree of Doctor of Philosophy in Communication (246AA) November 2018 Faculty of Arts & Design, University of Canberra - i - Abstract Storytelling gives voice to people’s experiences, assisting them in making meaning of their lives and their place in it. It is also integral to a person’s narrative identity and the sense of self created through these stories. Philosopher Paul Ricoeur asserts that narrative identity is not present at a story’s beginning but born in the telling, creating a future for the narrator. For some, the effects of ongoing illness complicate narrative identity and storytelling becomes an avenue to express what it is to live with the effects of disease and how it shapes self. The resultant stories are known as illness narratives. Illness narratives form a burgeoning category of autobiography but published texts are limited to mostly adult storytellers. This thesis examines contemporary young adult fictional illness narratives (‘illness fictions’) as a cohort of books that act as transformative texts in the interpretation and understanding of the illness experience. Sociologist Arthur Frank’s illness narrative typology, based on Paul Ricoeur’s idea of narrative identity and consisting of three categories, provides a lens through which to interrogate these texts and their narrative type. While Frank’s typology is a useful initial tool, its application to stories of ill adolescents is restrictive. This thesis extends the illness narrative typology to five categories in order to create a more nuanced framework for the investigation and creation of illness. The additional categories enable particular stories of adolescents in particular to be recognised. With an advanced understanding of illness narrative types for adolescents, writers are more empowered to create authentic illness fictions for their readers. The thesis is in two volumes. The exegesis investigates illness narratives, the development of narrative identity and the application of a typology for classifying and writing illness fictions; and the creative work showcases the application of illness narrative types in a novel for young adults. - iii - Contents Abstract .................................................................................................................................... iii Certificate of Authorship of Thesis ............................................................................................ v Contents ................................................................................................................................... vii Acknowledgements ................................................................................................................... ix Introduction .............................................................................................................................. 11 One: What it is to be ill ............................................................................................................ 15 Two: A call for stories ............................................................................................................. 21 Arthur Frank’s Illness Narrative Categories ........................................................................ 24 Three: The story of self ............................................................................................................ 27 Identity: performance, subject positioning and agency ....................................................... 27 Four: Unpredictable stories ...................................................................................................... 33 Five: The young and wounded ................................................................................................. 39 Six: Stories for transformation ................................................................................................. 43 Seven: Giving voice ................................................................................................................. 49 Young adult illness fictions ................................................................................................. 49 Applying Frank’s typology of illness to young adult literature ........................................... 51 The extended illness narrative typology .............................................................................. 52 The Restitution Narrative ..................................................................................................... 53 The Chaos Narrative ............................................................................................................ 53 The Quest Narrative ............................................................................................................. 55 The Foundation Narrative .................................................................................................... 55 The Agentic Narrative .......................................................................................................... 56 Young adult literary illness fiction exemplars ..................................................................... 56 Eight: How it is to be ill ........................................................................................................... 57 - vii - The five narrative types of illness fiction: restitution, chaos, quest, foundation and agentic .............................................................................................................................................. 57 A restitution narrative: On the Jellicoe Road by Melina Marchetta ...................... 57 Chaos and Despair: The Dead I Know by Scot Gardner ........................................ 63 A quest narrative: Going Bovine by Libba Bray .................................................... 72 A foundation narrative: The Absolutely True Diary of a Part-time Indian by Sherman Alexie ................................................................................................................ 78 Agency: How I Live Now by Meg Rosoff .............................................................. 85 Nine: The writer’s journey ....................................................................................................... 95 Bibliography .......................................................................................................................... 101 Appendices ............................................................................................................................. 115 Appendix 1: A brief history of YA literature to 2015 (Adapted from Heuschele, 2007) .. 116 Appendix 2: Summary of literary award criteria ............................................................... 118 Appendix 3: The evaluation framework ............................................................................ 121 Appendix 4: Literary award winners 2003-2015 ............................................................... 122 Appendix 5: Literary young adult illness fictions 2003-2015 ........................................... 125 Appendix 6: Illness narrative typology rubric ................................................................... 126 Appendix 7: Extended Illness Narrative Typology ........................................................... 127 Appendix 8: Publications and presentations ...................................................................... 128 Étude .......................................................................................................................................... 3 - viii - Acknowledgements Thanks to my supervisory panel Associate Professor Anthony Eaton, Assistant Professor Jennifer Crawford and Emeritus Professor Belle Alderman for their support. Special gratitude goes to Tony for his battles with technology as we fought the long-distance supervision demon, and his never-ending wise words and encouragement. To Dr Natalie Radomski, whose gentle advice and kindness I miss from our day-to-day interactions. To Dr Patrick Mullins and Tom Gibson, my first friends at UC, who have gone on to great things (Patrick) and is hilariously inspiring (Tom). I’m not sure that working full time and studying part-time is the most favourable, but sometimes there’s not a lot of choice. To my friends Dr Marita Chisholm, Dr Deb Russell and others in SLAP (the post-grad group at work), you well and truly beat me to it. We all owe gratitude to Helen Cronin for her keen eyes. Of course, to my family - Mick, Oli, Mel - who are the reasons for everything I do. I love my PhD T-shirt, the one that reminds me that I am gettin’ there. This research project has allowed me to link many jigsaw pieces of my life together – my training as a physiotherapist, my work as a medical educator, and my vocation as a writer. I have enjoyed it. - ix - Introduction Storytelling gives voice to people’s experiences, assisting in making meaning of their lives and their place in it. Narrative identity, the sense of self informed by past and present experience, is created by the stories that are told to others, and in the way in which this occurs (McAdams 1993; Ricoeur 1991; Rimmon-Kenan 2002). For some individuals, narrative identity is complicated by disruptive factors to an expected life trajectory. People who have chronic illness (physical or mental),
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