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Constructing Narratives and Identities in Auto/Biography About Autism RELATIONAL REPRESENTATION: CONSTRUCTING NARRATIVES AND IDENTITIES IN AUTO/BIOGRAPHY ABOUT AUTISM by MONICA L. ORLANDO Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of English CASE WESTERN RESERVE UNIVERSITY May 2015 2 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the dissertation of Monica Orlando candidate for the degree of Doctor of Philosophy.* Committee Chair Kimberly Emmons Committee Member Michael Clune Committee Member William Siebenschuh Committee Member Jonathan Sadowsky Committee Member Joseph Valente Date of Defense March 3, 2015 * We also certify that written approval has been obtained for any proprietary material contained therein. 3 Dedications and Thanks To my husband Joe, for his patience and support throughout this graduate school journey. To my family, especially my father, who is not here to see me finish, but has always been so proud of me. To Kim Emmons, my dissertation advisor and mentor, who has been a true joy to work with over the past several years. I am very fortunate to have been guided through this project by such a supportive and encouraging person. To the graduate students and faculty of the English department, who have made my experience at Case both educational and enjoyable. I am grateful for having shared the past five years with all of them. 4 Table of Contents Abstract ............................................................................................................................... 5 Chapter 1: Introduction Relationality and the Construction of Identity in Autism Life Writing ........................ 6 Chapter 2 Clara Claiborne Park’s The Siege and Exiting Nirvana: Shifting Conceptions of Autism and Authority ................................................................................................. 53 Chapter 3 Transformative Narratives: Double Voicing and Personhood in Collaborative Life Writing about Autism ............................................................................................... 106 Chapter 4 Expanding Possibilities for Personhood and Narrative: Parent Memoir about Life with Severe Autism ........................................................................................................... 157 Chapter 5 Autistic Autoethnography: Articulating Self, Locating Culture ............................... 213 Chapter 6: Conclusion Relationality in Autism Life Writing: Looking Forward .......................................... 273 Works Cited .................................................................................................................... 292 5 Relational Representation: Constructing Narratives and Identities in Auto/Biography about Autism Abstract by MONICA L. ORLANDO This dissertation explores the use of relational writing practices in the textual representation of life with autism. While people with autism are often seen as isolated and as so different from the norm as to lie outside the realms of personhood and selfhood, incapable of producing stories of their own lives, attention to relationships in the construction of both life stories and identities works against such limitations, instead demonstrating the ways that people with autism are connected with others and acknowledging the coexistence and legitimacy of both normative and nonnormative ways of being. I define relational life writing as a set of textual practices that draw upon, and draw attention to, the significance of relationships among people, voices, and discourses, in the narration of lives and the construction of identities. These practices include the use of metaphor to seek to understand the experiences of others; the challenging of norms through life stories that resist conventional narrative models; attention to communication beyond the verbal through rhetorical listening and interpretation; and the use of autoethnographic techniques to respond to and resist others’ representations of oneself and one’s sociocultural group. By examining a variety of forms of auto/biographical writing about life with autism, including parent memoirs, collaborative texts between parents and autistic children, and single-author texts by autistic writers, I argue that relational life writing makes possible new ways of thinking and writing about autistic experience and identity. 6 Chapter 1 Relationality and the Construction of Identity in Autism Life Writing “Jessy cannot tell her story for herself. Though she can speak nothing but truth and her memory is unerring, I must tell it for her, today as when she was eight years old. Once I was naïve enough to think she might; when I wrote that account of her first eight years I changed her name to Elly so she need never be embarrassed. I know now how effortful is her reading, how partial her understanding, how questionable her embarrassment. I know too that she’d never read such a story even if she could, or understand why it might be worth the telling. So I can tell it freely, in its continuing strangeness and its increasing, precious ordinariness, as Jessy enters, more and more fully, yet never entirely, the world in which we live, all of us, together.” - Clara Claiborne Park, Exiting Nirvana (208) “Was it possible there was more to Carly’s personality than we had thought? After all, Carly was autism. Autism, tantrums, and neediness. … [T]here was a wall that couldn’t be breached, locking her in and us out. Bit by bit, now a few stones were beginning to crumble.” - Arthur Fleischmann, Carly’s Voice (116) “I always had a voice. It was just inside of me. I would talk to myself and even reply back to people sometimes even though they couldn’t hear me.” - Carly Fleischmann, Carly’s Voice (360) “I’ve told Cam’s story from my own viewpoint, yet I’ve also tried to speak for my son, who can’t speak for himself—to convey what I believe he felt, desired, and thought. But I can’t really know how it feels to be Cam. In that sense, his story may never be told.” - Mark Osteen, One of Us (262) “The restoration of spirit that I achieved through belonging…is no different for autistic people than it is for all other people who need companionship. It is this sense of companionship that validates one’s experience from afar. It is crucial for our sense of well-being and the awakening of our potential. But it is also, after this kind of healing, essential for our emergence as individuals.” - Dawn Prince-Hughes, Songs of the Gorilla Nation (33) Introduction The representation of the lives of people affected by autism, including those diagnosed as autistic as well as those in relationships with them, presents both significant challenges and opportunities for autobiographical writing. Autism, a developmental disability that encompasses a broad spectrum of abilities and impairments, has over the 7 past few decades become an increasingly substantial presence in many areas of discourse, including medical, psychological, educational, literary, and, most notably for my interests, autobiographical. One major factor in this increasing discursive presence is the growing number of people diagnosed as autistic since the condition was first designated by psychiatrist Leo Kanner in 1943; initially considered a rare disorder, the most recent estimates indicate that 1 in 68 children in the United States now falls somewhere on the autism spectrum (CDC). As the number of people diagnosed as autistic has steadily grown, so has the drive to understand what it means to live with autism, for individuals, families, and communities. However, the realities of autism often make the representation of autistic subjects, both by themselves and by others, complex and challenging. One of the most common manifestations of autism is impaired communication, which may make self- representation in language difficult or impossible, presenting obstacles to conventional modes of autobiography. This means that for the written representation of life with autism to take place, it must often be undertaken or mediated by non-autistic family members or “proximate others” (Couser, Vulnerable Subjects 40), a practice that may be called into question by readers and critics due to its not being perceived as conventional self-representation of an individual. Even when an autistic subject is able to produce his or her own life narrative, such a narrative often is seen as challenging normative notions of selfhood and credibility because of the significant neurological and behavioral differences that autism can entail. Because of autistic individuals’ differences from the norm, non-autistic others, including medical experts, often question whether a person with autism can be considered a “person” or a “self,” and whether he or she is capable of 8 writing or communicating about his or her own life. Oliver Sacks, for instance, tells of his initial response to Temple Grandin’s groundbreaking 1986 autobiography Emergence: Labeled Autistic: “When I first read the book, I could not help being suspicious of it: the autistic mind, it was supposed at that time, was incapable of self- understanding and understanding others and therefore of authentic introspection and retrospection. How could an autistic person write an autobiography? It seemed a contradiction in terms” (Anthropologist 253, emphasis original). Similarly, Uta Frith and Francesca Happé, in a discussion of autistic autobiographical texts, warn that “there are grave limitations with this type of material. While the accounts are intriguing, it might be a mistake
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