Sing Fox to Me: An Investigation into the “Use” of Down syndrome in Both the Down Syndrome and Gothic Novel Why are characters with Down syndrome built into the scaffolding of the Down Syndrome novel rather than being represented as individuals with a clear agency and a legitimate, autonomous voice and point of view? And, how might the Australian Gothic novel open up new possibilities for practitioners of modern disability fiction? Sarah Jean Kanake Bachelor of Creative Industries (Creative Writing) First Class Honours, Creative Industries (Creative Writing) Submitted in fulfilment of the requirement for the degree of Doctor of Philosophy School of Media, Entertainments and Creative Arts Creative Industries Faculty Queensland University of Technology 2014 Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. ABSTRACT This project investigates the current borders around and within, what I have in this exegesis termed, “the Down Syndrome novel”, using a close reading analysis of literary texts containing characters with Down syndrome and contextualised by theoretical works drawn from both disability and literary theory. This practice-led thesis introduces and discusses select fictional characters with Down syndrome from numerous genres, revealing them as highly contained, or “boundaried”, spoken for, and generally used for narrative conflict rather than included as individuals with agency and a legitimate, autonomous voice and narrative point of view. The Down Syndrome novel is defined and positioned as sharing a similar space with colonial texts, as both impose “Otherness” and use this otherness to maintain possession, establish order and build boundaries. The Gothic novel often dissolves or rejects these boundaries and is generally unconcerned with maintaining order. Marcus Clarke’s “weird melancholy” (Clarke [1896] cited in Birns 2005, 131) is discussed in order to understand how the Australian landscape may have been described as disabled, but does not passively accept this limitation. In reframing the Australian landscape as “disabled” this exegesis illustrates that, unlike the character with Down syndrome in more conventional fiction, the Australian Gothic novel can shift, and sometimes even remove, the boundary around characters with intellectual disabilities, allowing a space where the stories of characters with Down syndrome can emerge. In the writing of my novel Sing Fox to Me, I argue that the Gothic narrative is a space where these imposed boundaries can be pushed and even dissolved. Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. i Keywords – Australia, Boundary, Down syndrome, Faulkner, Gothic, Intellectual Disability, Literary, Novel, Narrative Scaffolding, Narrative Structure, Point of View, Voice. Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. ii TABLE OF CONTENTS Abstract …………….……………………………………………………………………..…... i Keywords ……..……………………………………………………………………………. ii Table of Contents ....………………………………………………………………….….… iii Statement of Authorship ……………...……………………………………………….…... iv Acknowledgments ..……………………………………………………………….….……… v Definitions ……………………………………………………………..……………………. vi Outline of Project …………….…………………………………………...………………… ix Description of Project ….………………………………………………………. ix Research Question ……………………..……..………………….…………… xvi Development of Project ……………………………...………….………….… xvi Literature Review ……………………………………………………………………………. 1 Research Methodology …………………………………………………………………..…. 17 Novel: Sing Fox to Me ……………………………………………………….………….….. 21 Introduction …………………………………………………………………….…….……. 340 Chapter One: Taking Down the Fence: Down syndrome as Boundary ……………...…….. 345 1.1 What is the Down Syndrome novel? ………………………………….….…... 347 1.2 Revealing Down syndrome ……………………………………………......…. 368 1.3 Down syndrome and the Mother Narrative ………………………….…...……374 1.4 Gothic and Down syndrome ……………………………………….….....…… 390 Chapter Two: Beyond the Fence: The Strange Scribblings of Nature ..………………..…. 399 2.1 Australian Gothic……………………………………………………………... 405 2.2 Hell and Utopia……………………………………………………………….. 416 Chapter Three: Self Reflection: Burning Down the Fence………………………………… 423 3.1 The “Little Mother” as Boundary in Sing Fox to Me………………….….….. 425 3.2 Down syndrome, Australian Gothic and Bees ...………………………......…. 426 3.3 Becoming Not So Strange in a Strange Place …………………………...…… 435 Conclusion ………………………………………………………………………………… 437 Publication Statement …………………………………………………………………….. 440 Bibliography ……………………………………………………………………………..... 441 Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. iii STATEMENT OF AUTHORSHIP Signature: QUT Verified Signature Date: 28/08/2014 Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. iv ACKNOWLEDGEMENTS First, I would like to thank the Fellowship of the Reading, Level 5 of K Block, the Golden Age of Booksellers, and my close friends and family. You all saw me through. In particular, Emily Philip, Kate Sunners, Dr. Ari Van Lyn, Dr. Liz Ellison, Dr. Tess Van Hemert, Samuel Finnegan, Kate Cantrell, Penny Holliday, Hannah Fry, Hayley-Jane Fry, Bronwen Gray, Bessie Holland, Jann Eyles, Sam Eyles, Sarah Seminutin, Max Kanake and Cara Shrimpton. A very special thanks to all the staff in the Creative Writing and Literature Studies faculty and Postgraduate department at QUT. Particularly Dr. Susan Carson, Dr. Kari Gislason and Dr. Philip Neilsen for supplying me with teaching throughout my candidature. Thank you to (bibliography-whisperer) Tyler Bartlett and Dr. Donna Hancox for her tough love and humour. Dr. Sharyn Pearce, for her support, encouragement and belief in me even when I had a green Mohawk. And, an enormous thank you to fellow writer Dr. Lee McGowan for his reassurance, occasional red pen and friendship. This project owes special thanks to six very important influences in my life. My editor, Aviva Tuffeild. Thank you for seeing the potential in my strange scribblings. My extraordinary teacher, support, reader, editor and friend, Dr. Lesley Hawkes. Without your influence and guidance no one would understand the bees. My hunting partner Jared Spurr, who took me to Tasmania and stayed very quiet (but also cooked dinner and blew up the air mattress) while I searched for tigers, and Charlie Cooper, who (without knowing it) gave me the second star to the right to shoot for. But mostly, this novel and research is for Bel Bel, and The Boy. Thank you. Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. v DEFINITIONS Down syndrome – Down syndrome, named after its “discoverer” Dr John Langdon Downs in 1866, is a chromosomal disorder caused by the presence of an extra chromosome 21. The National Dissemination Centre for Children with Disabilities in the United States defines Down syndrome as: Down syndrome is the most common and readily identifiable chromosomal condition associated with intellectual disabilities. It is caused by a chromosomal abnormality: for some unknown reason, an accident in cell development results in 47 instead of the usual 46 chromosomes. This extra chromosome changes the orderly development of the body and brain. (NDCCD 2013) The NDCCD also states that: “Nearly 5,000 babies are born with Down syndrome in the United States each year. This means that 1 in every 733 babies is born with this condition”. According to recent studies Down syndrome is the “most common presenting chromosomal disorder” (Gothard 2010, 33) and, according to the CDC in the US, in 2002: Down syndrome was found to be present in about 1 of every 1,000 children… in 10 chosen regions of the United States, which means that approximately 83,000 children and adolescents with Down syndrome were living in the United States during that year (CDC 2013). There are three types of Down syndrome, Trisomy 21, Mosaic and Translocation Down syndrome [Down syndrome Victoria] each of which manifests as a developmental disorder along with a “characteristic set of facial and physical features” (Korenberg 1994, 4998). Gothard defines these features in Greater Expectations. Sing Fox to Me: An Investigation into the “use” of Down syndrome in both the Down Syndrome and Gothic Novel. vi These classical features (or ‘stigmata, the technical term’) of Down syndrome are visible in the face, neck, feet and hands. The eyes may appear to tilt upwards and be almond-shaped, a fact which led to earlier naming of the syndrome as ‘Mongolism’, as this feature was viewed as typically ‘Asiatic’. The irises… sometime exhibit rather attractive light flecks called ‘Brushfield strokes’. In some the tongue can protrude, and the mouth and its cavity may be smaller than normal [sic]. Ears too are sometimes smaller and the tips are slightly folded over. A child’s face is sometimes flatter, especially in the bridge of the nose, and the head smaller. Some with Down syndrome have a characteristic transverse palmar or ‘simian’ crease, a single line crossing the palm of the hand instead of two; others have an inward curved finger. Sometimes a wide gap exists between the first and second toe (Gothard 2010, 33). Down Syndrome novel – The Down Syndrome novel refers to a novel that builds the scaffolding of plot and story around