Unbroken: Personal storytelling as a method of illuminating parenting experiences of disability, illness and diversity (original) (raw)

2019, Doctorate of Creative Arts thesis

*Please note that the creative component of this thesis is withheld. This project examines how personal storytelling can be used to illuminate and further develop understanding of illness, disability and diversity. Through an exegesis and creative component, it explores the notion that we live on a human continuum, and how the sharing of stories can help to break down the ‘them and us’ and ‘normal and abnormal’ dichotomy so often found in dialogue on illness and disability. The author proposes that personal storytelling can disrupt definitions around normality and instead offer a tool to assist in the development, and enhancement, of empathy. The creative component of this project is a multi-layered text that examines the experiences of family units living with what was formerly known as Asperger’s syndrome, then high functioning autism, and now autism. Indeed, the lived experience of those on the spectrum can resist well-ordered classification. This section combines the author’s own story as a mother, interviews with other families and individuals, and reflections on the process of researching and writing about autism. Incorporating a critical self-consciousness into her writing, the author ruminates on the complexities of parenting a son who is ‘on the spectrum’ by adopting a “wondering gaze”, as Max van Manen (2002) terms it, with the answers found in the “experience of writing itself” or in this “writerly space where reigns the ultimate incomprehensibility of things…the uncanny rumble of existence itself” (p. 243). The exegesis discusses the altruistic motivation for using self-reflexive writing techniques in narrative representations of illness and disability. As sociologist Marjorie L. DeVault (1997) writes: “[personal writing] makes excluded voices ‘hearable’ within a dominant discourse” and “is useful for exploring the unexpected and thus for bringing to light aspects of ‘ordinary’ experience that are typically obscured” (p. 226). It is particularly important to address the ‘social’ and the ‘ordinary’ everyday experiences within illness and disability because they are often neglected in the medical setting. Yet such experiences are what make a person whole—they are, of course, so much more than their physical symptoms and treatments (Richards, 2008; Carel, 2008). Through an analysis of texts by parents raising children with disabilities, the exegesis explores the advantages and drawbacks of vulnerable writing about oneself and others. It is proposed that researching and writing with reflexivity not only allows authors to better understand themselves, but also opens the door to reader empathy, creating a sense of connection for readers and a greater understanding of the ethnographic subject matter by pushing against assumptions and breaking down stereotypes. Simultaneously, the author applies this knowledge to her creative project to illuminate the nuances of families living with autism. As such, the research provides an avenue that affords some empathy for the people in the stories told, and subsequently becomes a tool for understanding, for it is through connecting with others’ stories, chaotic as they may be, that we make meaning of experiences and sense of our lives (Mattingly & Garro, 2000).