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Hiv/Aids and Identity Recovery: Stitching the Self Back Together

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Hiv/Aids and Identity Recovery: Stitching the Self Back Together HIV/AIDS AND IDENTITY RECOVERY: STITCHING THE SELF BACK TOGETHER by KAITLIN JESSICA SCHWAN A thesis submitted to the Department of Art In conformity with the requirements for the degree of Masters of Art Queen’s University Kingston, Ontario, Canada (September, 2009) Copyright © Kaitlin Jessica Schwan, 2009 Library and Archives Bibliothèque et Canada Archives Canada Published Heritage Direction du Branch Patrimoine de l’édition 395 Wellington Street 395, rue Wellington Ottawa ON K1A 0N4 Ottawa ON K1A 0N4 Canada Canada Your file Votre référence ISBN: 978-0-494-65228-2 Our file Notre référence ISBN: 978-0-494-65228-2 NOTICE: AVIS: The author has granted a non- L’auteur a accordé une licence non exclusive exclusive license allowing Library and permettant à la Bibliothèque et Archives Archives Canada to reproduce, Canada de reproduire, publier, archiver, publish, archive, preserve, conserve, sauvegarder, conserver, transmettre au public communicate to the public by par télécommunication ou par l’Internet, prêter, telecommunication or on the Internet, distribuer et vendre des thèses partout dans le loan, distribute and sell theses monde, à des fins commerciales ou autres, sur worldwide, for commercial or non- support microforme, papier, électronique et/ou commercial purposes, in microform, autres formats. paper, electronic and/or any other formats. The author retains copyright L’auteur conserve la propriété du droit d’auteur ownership and moral rights in this et des droits moraux qui protège cette thèse. Ni thesis. Neither the thesis nor la thèse ni des extraits substantiels de celle-ci substantial extracts from it may be ne doivent être imprimés ou autrement printed or otherwise reproduced reproduits sans son autorisation. without the author’s permission. In compliance with the Canadian Conformément à la loi canadienne sur la Privacy Act some supporting forms protection de la vie privée, quelques may have been removed from this formulaires secondaires ont été enlevés de thesis. cette thèse. While these forms may be included Bien que ces formulaires aient inclus dans in the document page count, their la pagination, il n’y aura aucun contenu removal does not represent any loss manquant. of content from the thesis. Dedicated to my mother, Jacqueline Schwan, whose belief in me inspires everything I do. ii Abstract In this thesis I explore and evaluate the grounds upon which we can claim that community and activist art makes a difference in peoples’ lives. To do so, I examine an ongoing art project that seeks to transform the lives of American women with HIV/AIDS through artistic creation, the STITCHES Doll Project. To evaluate the efficacy of the Project, I position the Project in relation to the history of HIV/AIDS in America, popular and medical understandings of the illness, connections between HIV/AIDS and oppressive structures, representations of the illness, as well as Western conceptions of embodiment, illness, and identity. Against this history, I provide visual and textual analyses of several of the works produced through the STITCHES Doll Project, in combination with interviews and reports from participants themselves, to determine how these dolls affect these women’s sense of self and agency. This thesis argues that Western understandings of the meaning of HIV/AIDS, combined with its physical, emotional, social, and psychological effects, violently erodes a sense of self for those who contract the illness. Specifically, I argue that because identity in the West is predicated upon self-control, self-containment, mental control, and a repression of embodiment, illness, and death, HIV/AIDS has been experienced at both a personal and cultural level as corrosive of identity. In response to such pain, the STITCHES Doll Project provides an opportunity for HIV+ women to use a variety of strategies to re-establish their identity. Strategies such as sharing the illness or displacing it, when enacted through the Project, can successfully assist in re-affirming identity for participants. I suggest that this is where the value of the Project is best situated, and that this case study provides reason to believe in the value and power of community and activist art. Nevertheless, the Project’s success at individual, social, political, and pedagogical levels is tempered by the challenges posed by cultural codes, discourses, institutions, and practices. In iii light of this, my research explores how negotiation of these cultural codes, norms and practices helps to both re-build, as well as un-do, identity for participants. iv Acknowledgements First and foremost, I would like to thank my deeply committed and insightful thesis supervisor, teacher, and friend, Dr. Lynda Jessup. Her encouragement in my pursuit of this research, her tireless editing, and most specifically her excitement about this project has made this thesis possible. Dr. Jessup has the unique capacity to challenge her students to challenge themselves, and I have grown both personally and academically because of this. I would like to thank her for her patience with me as I have learned what it means to write a thesis, organize my time, and cross disciplinary boundaries. Most specifically, Dr. Jessup has inspired me to continue on in academia with the faith that academic research can be socially, culturally, and politically transformative and powerful. This is one of the most valuable gifts I have ever received. My deep appreciation is extended to Dr. Jackie Davies, whose extensive work on the development of this thesis are neither forgotten nor taken for granted. Dr. Davies’ tireless commitment to reminding me of the political, social, and ethical realities around me has forced me to grow in ways I didn’t expect. Thank you. I would like to give a very warm thank you to the founders and participants of the STITCHES Doll Project. Your courage, passion, and beauty are the inspirations for this thesis. Thanks go to Kathy Gerus-Darbison especially for her contributions to my research. Queen’s University, and the Department of Art in particular, has been exceptionally supportive and helpful as I have pursued my degree and research. I would like to thank Dr. Janice Helland for her patience, support, and compassion as I have learned how to navigate graduate school. I am indebted to the wonderful staff of the Queen’s University Art Department, especially Diane Platt, who I consider a good friend. I would like to thank the numerous staff and administration who kindly allowed me leniency when my registration, applications, documentation, and payments were just a little too late! v Throughout one’s education, there are always teachers who stand out for their passion, brilliance, and capacity to engage their students. I have been lucky to have several of these. Thank you to the following professors who I continue to marvel over: Dr. Karen Houle, Dr. John Potvin, Dr. Clive Robertson, Dr. Margaret Little, Dr. Rahul Kumar, Dr. Steve Leighton, Dr. Kenneth Dorter, Dr. Mathieu Doucet, and Dr. Victor Semerjian. I would also like to thank my kindergarten teacher, Mrs. Taylor, who thought I was more than a shy little girl. This degree and thesis would not have been possible without the kindness, warmth, and support of friends. Ms. Katie Mullins, my best friend, gave me the strength to believe in myself and believe this was possible. I would like to thank her for making me tea, answering the phone, letting me wear her clothes, painting with me, allowing me time alone, not letting me be alone, seeking adventure in everything, and helping me laugh. I would like to thank my best friends Andrea Spicer, Lilly Whitham, Shannon McFadyen, Jeffery Ord, Rebecca Boyce, Jared Both, Alex Koustas, Danny MacAdam, and Jordan Veenstra for their continual encouragement. Thank you to Eric de Demenico for reminding me what is important. Thanks to Nathan Baker for all of the years and all of the poetry. My gratitude to Jack van Dorp for helping me think through earlier versions of this thesis. I am also indebted to Douglas Nayler, who believed in me. My thanks are given to my extended (and extensive) family as well, in particular my aunt, Ms. Adrienne Taylor, whose courage inspires me every day. Thank you to Jim and Donna Schwan, whose encouragement throughout my education has meant the world to me. I would also like to thank Reg Quinton and Kate Graham, whom I consider my second parents. Finally, my deepest gratitude is extended to my family, Alanna, Mike, and Jacquie Schwan. Each of you has graciously allowed me to freely explore and express who I am. To my mother, thank you for all of the phone calls, for believing I can be who I want to be, and for teaching me what means to be a strong woman. To my father, it is because of you that I believe the world is a good place. To my sister, your joy is contagious; you are my dearest friend. vi Table of Contents Dedication ……………………………………………………………………………...………….ii Abstract ……………………………………………………………………………...…………iii-iv Acknowledgements ……………………………………………………………………….…….v-vi Table of Contents ....………………………………………………………………………….vii-viii List of Abbreviations ……………………………………………………………………………..ix List of Figures……………………………………... …………………………………....…...…x-xi Chapter One: Introduction: Globalizing the Visual, Visualizing the Global Picturing the World, Questioning the Discipline…………………………..……….……..1 The STITCHES Doll Project - Art That Makes a Difference …………….…………...….8 Chapter Two: Theories and Methods: Dismantling and Rebuilding Reinventing Art History ……………………………..………………………………......14 Western
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