DOCSLIB.ORG

Pausing Encounters with Autism and Its Unruly Representation: an Inquiry Into Method, Culture and Academia in the Making of Disability and Difference in Canada

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
Pausing Encounters with Autism and Its Unruly Representation: an Inquiry Into Method, Culture and Academia in the Making of Disability and Difference in Canada 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.
Load more

Recommended publications
  • Horse Boy Method 1 - Workbook
    Horse Boy Method 1 - Workbook Horse Boy Method 1 Intro Workshop 1 | Page Last Updated 2014‐ 06‐ 11 © 2013 All rights reserved, Horse Boy LLC Horse Boy Method 1 - Workbook Table of Contents Live course Overview ................................................................................................................................................. 4 Online course Overview ............................................................................................................................................ 4 Introduction ............................................................................................................................................................... 5 1. Theory ................................................................................................................................................................ 6 1‐0 Theory: The Horse Boy Story – How it began ............................................................................................ 6 1.1 Theory: Environment, Sensory, Back‐Riding ................................................................................................... 6 1.1 Theory: Rule based Games/Theory of Mind, Academics & Self‐Advocacy ..................................................... 8 1.2 Theory: Ethics! ................................................................................................................................................. 8 2. Environment .....................................................................................................................................................
    [Show full text]
  • Twice-Exceptional Newsletter July/August, 2016 for Parents, Teachers, and Professionals
    TM Twice-Exceptional Newsletter July/August, 2016 For parents, teachers, and professionals. Issue 77 Helping twice-exceptional children reach their potential. 2e Our focus for this issue — Authentic learning for 2e students Improvisational Play: Social/ Most importantly, improvisational play provides 2e Page perfectionists with a nurturing and safe learning envi- 3 Emotional Learning for 2e Students ronment for taking risks, experiencing missteps, and By Pat Sciortino, M.S. developing recovery skills vital to moving beyond any Quote challenges they may encounter. If I could do only one thing to help twice- exceptional students The Talent Development “They need a place where they can be themselves Page and be accepted. Here they have the opportunity to on their journeys, it 7 Cooperative indulge in creative thinking and admire each other for would be to identify it.” — Melissa Sornik and develop their tal- By Linda C. Neumann ents. It is their talents that will provide them a pathway to success in life. It is through 2e-Friendly School: Conservatory Conservatory Prep opened in Davie, Florida, in 2006 Page and graduated its first class in 2009. “In the beginning the rigors of talent 9 Prep years,” says founder Wendy Weiner, “it was really an development that By J. Mark Bade arts integration school. We felt we were going to use they will become self- the arts as the basis or part of the methodology for regulated and goal- learning, and we still do.” directed. It is through talent that they will Also Inside develop positive iden- From the Publishers .................................................................................................................................................................................................. 2 tities and like-minded Introduction to Social Thinking ...............................................................................................................................................................................
    [Show full text]
  • Production Notes for Feature Film, “Snow Cake” It's April 2005 and The
    Production Notes for Feature Film, “Snow Cake” It’s April 2005 and the snow is melting fast in Wawa there is perceptible panic throughout the cast and crew of Snow Cake when they find out that this location chosen specifically for its customary frigid climate and overabundance of snow – has very little snow to speak of. “The reason we went to Wawa in the first place was to get the snow, says director Marc Evans with a smile. “I was very worried about not getting enough snow. And then Alan Rickman, who plays Alex, said ‘Look, at the end of the day, this film is not about snow. It’s got snow in the title, but it’s about the people who live in this place.’ And I thought, yes, that’s so true. It’s the interaction between the two main characters that forms the thrust of the film. The joy of this film is seeing how the characters interact.” In fact, the lack of snow may have been a blessing in disguise for the film. ‘It appears that this film is being guided by some unseen force in a way,” Rickman says. “We went to Wawa a week later than we were due to. Had we gone there the week before, we would have encountered temperatures that would have been so horrific to work in, so cold, below freezing” Instead, “we had a freak period of 13 days of unbroken sunshine, which on the face of it, with a film called Snow Cake, you might think would be a problem!” But Rickman had always said that the film would find itself and it did in the most beautiful way as the snow thawed around them.
    [Show full text]
  • Disability in an Age of Environmental Risk by Sarah Gibbons a Thesis
    Disablement, Diversity, Deviation: Disability in an Age of Environmental Risk by Sarah Gibbons A thesis presented to the University of Waterloo in fulfillment of the thesis requirement for the degree of Doctor of Philosophy in English Waterloo, Ontario, Canada, 2016 © Sarah Gibbons 2016 I hereby declare that I am the sole author of this thesis. This is a true copy of the thesis, including any required final revisions, as accepted by my examiners. I understand that my thesis may be made electronically available to the public. ii Abstract This dissertation brings disability studies and postcolonial studies into dialogue with discourse surrounding risk in the environmental humanities. The central question that it investigates is how critics can reframe and reinterpret existing threat registers to accept and celebrate disability and embodied difference without passively accepting the social policies that produce disabling conditions. It examines the literary and rhetorical strategies of contemporary cultural works that one, promote a disability politics that aims for greater recognition of how our environmental surroundings affect human health and ability, but also two, put forward a disability politics that objects to devaluing disabled bodies by stigmatizing them as unnatural. Some of the major works under discussion in this dissertation include Marie Clements’s Burning Vision (2003), Indra Sinha’s Animal’s People (2007), Gerardine Wurzburg’s Wretches & Jabberers (2010) and Corinne Duyvis’s On the Edge of Gone (2016). The first section of this dissertation focuses on disability, illness, industry, and environmental health to consider how critics can discuss disability and environmental health in conjunction without returning to a medical model in which the term ‘disability’ often designates how closely bodies visibly conform or deviate from definitions of the normal body.
    [Show full text]
  • The Joy of Autism: Part 2
    However, even autistic individuals who are profoundly disabled eventually gain the ability to communicate effectively, and to learn, and to reason about their behaviour and about effective ways to exercise control over their environment, their unique individual aspects of autism that go beyond the physiology of autism and the source of the profound intrinsic disabilities will come to light. These aspects of autism involve how they think, how they feel, how they express their sensory preferences and aesthetic sensibilities, and how they experience the world around them. Those aspects of individuality must be accorded the same degree of respect and the same validity of meaning as they would be in a non autistic individual rather than be written off, as they all too often are, as the meaningless products of a monolithically bad affliction." Based on these extremes -- the disabling factors and atypical individuality, Phil says, they are more so disabling because society devalues the atypical aspects and fails to accommodate the disabling ones. That my friends, is what we are working towards -- a place where the group we seek to "help," we listen to. We do not get offended when we are corrected by the group. We are the parents. We have a duty to listen because one day, our children may be the same people correcting others tomorrow. In closing, about assumptions, I post the article written by Ann MacDonald a few days ago in the Seattle Post Intelligencer: By ANNE MCDONALD GUEST COLUMNIST Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing.
    [Show full text]
  • Name of Guide Library List
    NameLibrary of guide List A Guide for ParentsBooks Working wonders for children with brain conditions Families where a child has a brain condition face challenges every day. Just to learn, play, make friends and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome. So we listen to families, we learn from them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we find out together makes life better,better. It opens doors to discovering the world. It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together. www.cerebra.org.uk Our guides for parents help you find the answers you need. You can view and download the full series of our guides and factsheets completely free from our website www.cerebra.org.uk. If you would like to make a donation to help cover the cost of producing our guides give us a call on 01267 244216 or donate at www.cerebra.org.uk/fundraise/donate. Thank you. Contents How the Postal Lending Library Works 4 Acquired Brain Injury, Brain Tumour and Stroke 5 ADHD and ADD 6 Autism including Aspergers Syndrome (explaining autism) 7 Autism including Asperger Syndrome (living with autism) 10 Behaviour 14 Carers and Respite Care 16 Cerebral Palsy 17 Communication, Speech and Language 18 Down Syndrome 20 Education Teaching and Learning (general education) 21 Education Teaching
    [Show full text]
  • Temple Grandin Professeure De Zootechnie Et De Sciences Animales
    TEMPLE GRANDIN PROFESSEURE DE ZOOTECHNIE ET DE SCIENCES ANIMALES Mary Temple Grandin, dite Temple Grandin, née le 29 août 1947 à Boston, est une femme autiste, professeure de zootechnie et de sciences animales à l'université d'État du Colorado, docteure et spécialiste de renommée internationale dans cette même discipline. Elle monte en 1980 une entreprise d’ingénierie et de conseils sur les conditions d'élevage des animaux de rente, qui fait d’elle une experte en conception d'équipements pour le bétail. En 2012, près de la moitié des abattoirs à bovins d'Amérique du Nord sont équipés du matériel qu'elle a conçu ; depuis les années 1980 jusqu'en 2016, elle a collaboré à environ 200 articles de recherche. Temple Grandin a été diagnostiquée avec des « dommages cérébraux » à l'âge de deux ans, et n'a pas parlé avant l'âge de trois ans et demi. Une intervention précoce lui a permis de progresser, de suivre sa scolarité jusqu'en doctorat, puis de vivre de son métier. Elle est également connue pour être la première personne autiste à avoir témoigné de son expérience de vie dans des autobiographies, Ma vie d'autiste en 1986 et Penser en images en 1995. Elle fait régulièrement appel à des techniques de scanographie, qui ont révélé le fonctionnement et la structure particulière de son cerveau spécialisé dans la pensée visuelle, une recherche publiée dans l'ouvrage Dans le cerveau des autistes, en 2013. Elle s’implique pour la défense du bien-être animal, plaidant pour une meilleure prise en compte de la souffrance animale pendant l'élevage et l'abattage, s’opposant en particulier à l'élevage en batterie.
    [Show full text]
  • Autism, Humanity and Personhood: a Theological
    AUTISM , HUMANITY AND PERSONHOOD : A THEOLOGICAL PERSPECTIVE Jennifer Anne Cox BSc; GradDipEd; BTh; BTheol (hons) This thesis is presented for the degree of Doctor of Philosophy 2015 1 I declare that this thesis is my own account of my research and contains as its main content work which has not previously been submitted for a degree at any tertiary education institution. ………………………………………………….. Jennifer Anne Cox 2 Abstract Theological anthropology is charged with providing an understanding of the human. But theological anthropology can exclude people who are cognitively impaired because it has historically upheld reason as the image of God. Recent theology of intellectual disability has bypassed this difficulty by emphasising relationality as the image of God. This approach, however, has the unfortunate consequence that it excludes people with severe low- functioning autism, who do not relate to others as persons but as objects. This thesis aims to articulate a theological anthropology which is inclusive of people with severe autism. Autism is a pervasive developmental disorder, the main characteristic of which is difficulty in social interaction. An examination of the Genesis creation story reveals both that God is relational and that human beings were created to live in relationship with God and other humans. This raises the theological question of how we may understand people with severe autism as human persons. Through an investigation of the significance of the incarnation I argue that the best basis for an inclusive anthropology, not dependent on any characteristic or ability, is the vicarious humanity of Christ. This is because Jesus Christ is the only human being who is without sin and the only true image of God.
    [Show full text]
  • Educational Inclusion for Children with Autism in Palestine. What Opportunities Can Be Found to Develop Inclusive Educational Pr
    EDUCATIONAL INCLUSION FOR CHILDREN WITH AUTISM IN PALESTINE. What opportunities can be found to develop inclusive educational practice and provision for children with autism in Palestine; with special reference to the developing practice in two educational settings? by ELAINE ASHBEE A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY School of Education University of Birmingham November 2015 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. Amendments to names used in thesis The Amira Basma Centre is now known as Jerusalem Princess Basma Centre Friends Girls School is now known as Ramallah Friends Lower School ABSTRACT This study investigates inclusive educational understandings, provision and practice for children with autism in Palestine, using a qualitative, case study approach and a dimension of action research together with participants from two educational settings. In addition, data about the wider context was obtained through interviews, visits, observations and focus group discussions. Despite the extraordinarily difficult context, education was found to be highly valued and Palestinian educators, parents and decision–makers had achieved impressive progress. The research found that autism is an emerging field of interest with a widespread desire for better understanding.
    [Show full text]
  • Supporting Neurodiverse Students on Campus and Beyond
    Supporting Neurodiverse Students on Campus and Beyond Eric R. Mitchell, PhD [email protected] [email protected] Amy D. Edwards, Ed.D. [email protected] with Drexel Students Armon Owlia, Robert Barton, and Morgan Murtagh 4th Annual Philadelphia Autism Project Conference “Journey through the Lifespan: Mapping Your Path” In collaboration with Ruttenberg Autism Center and Drexel University October 18, 2019 Objectives: Statistics on the low rates of college success and under-employment for individuals diagnosed on the spectrum are staggering. Developing programs that individualize supports for students are essential for successful transitions. This workshop will explore components of successful transition planning starting at 14 years of age under IDEA, continuing through the college years with ADA accommodations, and preparing graduates for success in vocational settings in the workplace. Ruttenberg Autism Center and Drexel’s DASP program have supported such success, and will discuss with students how these supports have promoted their own educational and vocational trajectories toward a more successful future. Describe components of transition planning that predict success in college and work settings. Identify how colleges can successfully assist neurodiverse students to overcome challenges. Summarize how a local university and service provider are collaborating to address the increasing need for autism accommodations in higher education, leading to success in the workplace. Your Questions….Answered! o On the index card, please write a question you would like answered in this presentation o We will incorporate those answers as we talk! What is Neurodiversity? - Definition - Neurodiversity is a concept where neurological differences are recognized and respected just as any other difference.
    [Show full text]
  • 14 Jan 2011 Draft
    MOVING BEYOND LOVE AND LUCK: BUILDING RIGHT RELATIONSHIPS AND RESPECTING LIVED EXPERIENCE IN NEW ZEALAND AUTISM POLICY by HILARY STACE A thesis submitted to the Victoria University of Wellington in fulfilment of the requirements for the degree of Doctor of Philosophy Victoria University of Wellington 2011 Abstract Autism Spectrum Disorder (ASD) diagnoses have been rising rapidly in recent years and New Zealand is just one country grappling with the policy challenges this presents. Currently, love, such as a supportive family, and luck, that appropriate services are available, are required by people with autism and their families for good outcomes, a situation that is neither equitable nor sustainable. Autism was first named as a separate condition in 1943. The concept of autism has developed significantly since then in many ways, including as the cultural identity that many autistic adults now claim. Influenced by the international disability rights movement and local activism, New Zealand policy is now based on the social model of disability, whereby society as a whole has responsibility for removing disabling barriers. In 1997, a New Zealand mother, unable to find appropriate support at a time of crisis, killed her autistic daughter. A decade of policy work followed, leading to the 2008 publication of the New Zealand Autism Spectrum Disorder Guideline (Ministries of Health and Education, 2008) which is the first whole-of-spectrum, whole-of-life, whole- of-government, best practice approach in the world to address the extensive issues surrounding ASD. Prioritisation and initial attempts at implementation revealed new problems. The complexity, lack of simple solutions and fragmentation of autism policy indicates that this is a „wicked‟ policy problem.
    [Show full text]
  • Virginia Becomes 26Th State to Enact Autism Insurance Legislation
    Volume 19 Issue 6 Autism Society , Central Virginia June 2011 6 Virginia Becomes 26th State to Enact Autism Insurance Legislation AS-CV Mission & On May 6, 2011 Governor Bob McDonnell signed legislation into law that will provide much needed medical treatment for Philosophy young children with Autism Spectrum Disorders. The sum- mary of the legislation from the General Assembly website The Autism Society, the nation’s leading states the legislation requires: grassroots autism organization, exists to improve the lives of all affected by autism. We health insurers, health care subscription plans, and health do this by increasing public awareness about maintenance organizations to provide coverage for the diagno- the day-to-day issues faced by people on the sis of autism spectrum disorder (ASD) and treatment for ASD spectrum, advocating for appropriate services in individuals from age two to six, subject to an annual maxi- for individuals across the lifespan, and mum benefit of $35,000 of coverage for applied behavior providing the latest information regarding analysis. Treatment for ASD includes applied behavior analy- treatment, education, research and advocacy. sis when provided or supervised by a board certified behavior analyst, who shall be licensed by the Board of Medicine, and the prescribing practitioner is independent of the provider of 2010–2011 OFFICERS AND BOARD: the applied behavior analysis. The mandate to provide cover- age will not apply to individual or small group policies, con- President: Sandi Wiley tracts, or plans. The mandate will apply to the state employees' Vice-President Fundraising: Pam Mines health insurance plan and to the local choice health program.
    [Show full text]