Pausing Encounters with Autism and Its Unruly Representation: An inquiry into method, culture and academia in the making of disability and difference in Canada A dissertation submitted to the Committee of Graduate Studies in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the Faculty of Arts and Science. TRENT UNIVERSITY Peterborough, Ontario, Canada Copyright by John Edward Marris 2013 Canadian Studies Ph.D. Graduate Program January 2014 ABSTRACT Pausing Encounters with Autism and Its Unruly Representation: An inquiry into method, culture and academia in the making of disability and difference in Canada John Edward Marris This dissertation seeks to explore and understand how autism, asperger and the autistic spectrum is represented in Canadian culture. Acknowledging the role of films, television, literature and print media in the construction of autism in the consciousness of the Canadian public, this project seeks to critique representations of autism on the grounds that these representations have an ethical responsibility to autistic individuals and those who share their lives. This project raises questions about how autism is constructed in formal and popular texts; explores retrospective diagnosis and labelling in biography and fiction; questions the use of autism and Asperger’s as metaphor for contemporary technology culture; examines autistic characterization in fiction; and argues that representations of autism need to be hospitable to autistic culture and difference. In carrying out this critique this project proposes and enacts a new interdisciplinary methodology for academic disability study that brings the academic researcher in contact with the perspectives of non-academic audiences working in the same subject area, and practices this approach through an unconventional focus group collaboration. Acknowledging the contribution of disability studies approaches to representation, this project will also challenge these methodologies on the grounds that the diverse voices of audiences are, at times, absent from discourse focused research. Chapter One offers an ii explanation of disability studies scholarship and the history of autism as a category of disability and difference. Chapter Two looks at how disability and specifically autistic representations have been understood academically and introduces the rationale and experiences of the focus group project. Chapter Three explores retrospective, biographical diagnosis, the role of autism as technological metaphor, and contemporary biography. Chapter Four looks at the construction of autistic characters in Canadian literature and film. Chapter Five interrogates documentary and news media responses to autism and the construction of autism as Canadian health crisis, and also explores how discourses that surround autism are implicated in interventions and therapeutic approaches to autistic individuals. Key Terms Autism; Autistic Spectrum; Asperger; Disability; Representation; Media; Interdisciplinary Research; Focus Group; Retrospective Diagnosis; Biography; Academic Method; Academic and Representational Responsibility; Literature; Film; Diagnosis; Disability Studies; Therapy iii Does an oversimplified model of how a human being comes to be result in an oversimplified model of what a human being is? (Ian Brown, The Boy in the Moon 178) Central to my sense of how we might understand autism is a desire to place the condition in cultural contexts. (Stuart Murray, Autism xiii) iv Preface It’s 7.30 in the morning, early March 2009. It’s cold outside, small wisps of snow are falling and the road is covered in those lovely swirls of drifting snow that are too light to settle. I am driving to Brian’s house to pick him up. We are heading out of town to spend two hours with Peter (name changed). Peter is five, he does not speak, he still wears diapers, he has autism (or is he autistic?). But I should start again, because these are not the most salient points about Peter, nor are the basic facts of his life: his older brother, his middle-class parents, the farm just outside of town. No, the reason that I am prefacing this dissertation with some thoughts about him are that he has taught me more than any other person how to be present and alive to another human and to myself, and you would not be reading this Ph.D. dissertation if I had not met him. For me and for what you are reading, these are the most salient points about Peter. On this particular cold March morning I am in possession of a certain knowledge about how some people see autism. I have been through a particular experience that I wish not to share with either Brian or Peter, but I know as I drive it comes between me and my work, between me and the world this day. Two nights ago I was attending a seminar for my Ph.D. This was one of a few critical meetings in the academic year where Ph.D. students are expected to present a synopsis of their research, and in preparation for this a paper outlining research and ideas is submitted to the department a few days before. There is no knowing who is going to be present at these meetings. The expectation is at least all the Ph.D. students in the program. Since the program has only been running for v two years, this means fewer than ten students (half of my cohort had already dropped out at this point). These events follow a fairly typical format, the student gives their presentation and fellow students are given the first round of questions, then faculty get their turn. I witness my two other second year colleagues take a verbal beating. And then it is my turn. One expects a mauling, some tough questions, but I do not expect the attack to come at such a personal or fundamental rights level. There is, then, a certain form of testing that I expect. Professor ‘P’ makes a comment about how well trodden the ground I am studying is and I should look elsewhere. There are other comments on poor reading of films, badly framed arguments, just how much work is needed to formulate a workable thesis. All predictable if frustrating and mostly unproductive stuff. Then Professor ‘R’ has her turn to speak: ‘John, why, why do you want to study these people, they are not even real people, they cannot even speak. You should study sex or something in French cinema.’ I get caught on the comment on French cinema, I think, ‘why would anyone want to study sex in French cinema, surely that has been done to death?’ Then I realize that (to his credit) Professor ‘B’ is angry, has shouted something about Stephen Hawking not being able to speak. I hear again in my head her words. I start to shake, I want to cry. I say nothing and the next professor starts offering her comments. No more is said about ‘R’s’ comment. Ever. Why didn’t I walk out? I am thinking this in the car two days later. I was leaving the program anyway. I had only attended the meeting because the chair of my future department had asked me to keep attending classes until my place in Canadian Studies was confirmed at the beginning of May. So there it is, it’s out. I did not start my Ph.D. in vi Canadian studies, but found a home here for my cultural focus on autism. And so I should take this opportunity to thank my department for its hospitality, particularly my supervisor Sally Chivers who counselled me through the wider academy’s troubling approach to disability studies, and Julia Harrison, the incoming chair in 2009, who negotiated a place for me and my work in the Frost Centre. At no point has anyone in the Canadian Studies Ph.D. program questioned the right of autistic people to exist. As one member of a care and therapy team, I worked on and off with Peter from January 2008 until the spring of 2012. For two years from 2008 to 2010 I picked up Brian every Friday morning and we would go together to Peter’s house and occupying him in many and varied ways for two hours before handing over to another member of the team. Brian is probably the most qualified, and talented play therapist in Ontario, maybe Canada. I learned almost as much from Brian as I did from Peter. What I learned from Brian is easier to put down on paper, but Peter’s teaching goes deeper. Brian could teach me that we have to respect who Peter is, meet him where he is ready to be met, but Peter could show quite clearly when I knew what this meant by smiling and offering a rare moment of eye contact if I was being truly present with him. In our more recent time together Peter would also greet me with a laugh and jumping, a clear Peter sign that I had achieved a certain level of acceptance and I was in his circle of love. In the last two years I have often picked Peter up from the special unit at his school (the back entrance, where the parents do not make eye contact with each other), for Monday afternoon play-dates. As I guide him towards the house, stand behind him on the porch steps to be sure he does not head to the road, he will try the handle of the screen door and maybe fifty-percent of the time he will manage to open it, the same cannot be vii said for the main door, which he opened once, turning the old metal round handle and pushing at the same time. The skill apparently found briefly, and then lost again. Peter enters the house slowly, with a sense of caution, a somewhat worried look on his face.