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University of Alberta Discourses of Fetal Alcohol Spectrum Disorder in Alberta by Irene Lata Shankar A thesis submitted to the Faculty of Graduate Studies and Research in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Sociology ©Irene Shankar Fall 2011 Edmonton, Alberta Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission. Abstract Our understandings of health and illness are shaped by the social and political context in which these understandings emerge (Foucault, 1975). Accordingly, I explore the socio-political context in which Fetal Alcohol Spectrum Disorder (FASD) emerged in Alberta through investigation of three research questions: 1) how did FASD emerge and become recognized as a public health concern in Alberta? 2) how do those in charge of managing FASD in Alberta understand this disorder? and 3) what are the implications of understanding FASD as it is currently understood? The data for this qualitative study was collected through 23 semi-structured interviews, archival research, and document analysis and was analyzed using discourse analysis. I examined the key individuals responsible for bringing FASD to public attention, the understandings those individuals have of FASD, and the effects of this history on the way that FASD is currently understood. The results demonstrate that discourses of risk, responsibility, gender, and race are invoked in FASD understandings. Public FASD discourse represents the unborn child as being “at risk¨ for FASD and the mother as being “responsible¨ for creating this risk. FASD discourse ignores the structural context (i.e. poverty, racism, marginalization, mental health disorders, and a lack of available addiction treatment programs) in which pregnant women consume alcohol. This focus on the child “at risk” in FASD discourse renders adults with FASD invisible and without adequate services and support. While FASD professionals are aware and critical of the ways in which discourses of risk, responsibility, gender, and race are invoked in FASD understandings, their ability to enact substantial change is limited by structural constraints. This is the first investigation of FASD discourse in Alberta. I trace the FASD discourse and its implications, as well as argue that it is characterized by the hyper-visibility of women deemed to be at risk for giving birth to children with FASD, the invisibility of adults with FASD, and silence on race. I also illustrate how FASD professionals attempt to negotiate these understandings and shape future discourse on FASD. My findings demonstrate the significance of undertaking a historical examination of health disorders, such as FASD. Acknowledgements I am very thankful to all the research participants for generously sharing their experiences, expertise and insights with me. I am extremely grateful for Dr. Amy Kaler’s outstanding support and continued mentorship. This dissertation would not have been completed without the incredible patience, guidance, and counsel of Dr. Kaler. I would also like to thank my committee members: Dr. Sara Dorow, Dr. Harvey Krahn and Dr. Malinda Smith for their insights and assistance throughout this process. My undying gratitude goes to my amazing group of friends who spent countless hours reading and editing my dissertation: Dr. Shane Gannon, Dr. Sarah Wall, Mr. Tim Hartley, Dr. Tim Haney, Dr. Kristin Lozanski, Mr. Sunoop Menon, and Ms. Lisa Lozanski. I am particularly grateful to Colleen Anderson, Milijana Setka, Beverly Matthews, Rupa Gannon, Sacha Ravelli and Lata Narayan for keeping me sane throughout this arduous process. I want to thank my parents Kala and Shiu Shankar for everything they have done and continue to do to ensure my continued success in life. I would also like to thank the rest of my family members, Dalip, Kamal, Aida, Anita, Walter, Sylvia, Jaynen and Amit, for their support. Finally, I want to thank Isobel Kala Clark for bringing unprecedented joy and happiness into my life. Philip Clark, without you this little success and the entire big world mean nothing. I thank you for giving me love and a life worth living. Chapter 1: Introduction............................................................................................ 8 Chapter 2: Literature Review...............................................................................12 A History of Fetal Alcohol Spectrum Disorder (FASD) in Canada.....................19 Conclusion and Discussion ............................................................................................26 Chapter 3: Research Methodology......................................................................28 Epistemology......................................................................................................................29 Discourse Analysis....................................................................................................................... 33 Power............................................................................................................................................................35 Knowledge..................................................................................................................................................37 Data Collection...................................................................................................................38 Interviews........................................................................................................................................ 39 Archival Research ........................................................................................................................ 44 Policy and Program Documents............................................................................................. 47 Data Analysis......................................................................................................................51 Limitations..........................................................................................................................54 Chapter 4: The Making of a Medical Disorder: Tracing the History of FASD in Alberta .........................................................................................................56 Social and Political Context...........................................................................................59 American Influence ..................................................................................................................... 59 Alberta............................................................................................................................................... 61 The Emergence of Fetal Alcohol Spectrum Disorder in Alberta .......................66 Becoming Debbie and Janet..................................................................................................... 66 Eliciting Public Support............................................................................................................. 71 Stories and Representations of the “Hurt Child” ............................................................ 72 The Numbers.................................................................................................................................. 73 A Preventable Disorder ............................................................................................................. 74 “They Just Really Came on Board”: The Development and Funding of FASD Programs.......................................................................................................................................... 75 Discussion and Conclusion............................................................................................81 Chapter 5: The Risk of and Responsibility for FASD.....................................86 Risk and Responsibility..................................................................................................87 Risk of and Responsibility for FASD...........................................................................91 Defining Risk .................................................................................................................................. 93 At Risk: Children......................................................................................................................................93 At Risk: Society.........................................................................................................................................97 Designating Responsibility.....................................................................................................101 Alcohol as the One and Only Cause of FASD ............................................................................. 108 Mother as Solely Responsible ........................................................................................................

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