A Shot in the Dark: Lay Perception of Inoculations and Anti-Vaccination Discourse By ©Andrea Kitta A thesis submitted to the School of Graduate Studies in pat1ial fulfillment of the requirements for the degree of Doctor ofPhilosophy Department ofFolklore Memorial University ofNewfoundland July 2009 St. John's Newfoundland Abstract In spite ofthe success of the childhood inoculation movement, questions about vaccines have increasingly been an object of concern for Canadians. This thesis explores vernacular beliefs and practices that surround decisions not to vaccinate, with the primary aim of providing concrete recommendations for improving inoculation promotion programs. Ideally health education programs are community based, involve collaborative partnerships between communities, researchers, and service providers, and make use of local concerns. Understanding health choices is dependent on exploring the variety of cultural issues and influences that constitute risk for the communities and individuals in question. Risk categories and 1isk perception are multifaceted, culture bound, personal, and political. Through the use of ethnographic, media, and narrative analysis, this thesis explores the vernacular explanatory models used in inoculation decision-making. The purpose of this research is targeted at the creation of public health education programs and promotional materials which respond to patients' real fears, real understandings of risk, real concerns, and real doubts. Explming the nature of inoculation distrust and miscommunication, this work isolates areas which require better public health communication and greater cultural sensitivity in the handling of inoculation programs. It also suggests guidelines for physician interaction with inoculation resistant patients. 11 Acknowledgements There are many people to which I am indebted, many of whom will likely have been forgotten in this section. As with any major work, I was influenced by everything I encountered since the day I was inspired to write on vaccination after seeing yet another news report on MMR and Autism. Although many of these small insights have been forgotten over time, I would like to think that there is a part of all of them, and a pru1 of everyone, in this work. First, I would like to thank everyone involved with the Depar1ment of Folklore at Memorial University. I have never encountered a more supportive environment. It was that support and encouragement which led me throughout my classes, comprehensive exams, research, and every other aspect of my life, both academic and non-academic. I would like to thank everyone for their open doors, thoughtful responses, and the opportunities they gave me. It is rare to see a department which fosters a climate where students feel like active participants in their education and valued members of a team. Words cannot express how fortunate 1 feel to be a part of the Department of Folklore at Memorial University. I would also like to specifically thank a few people from the program. Thanks to Dr. Mru1in Lovelace for being a wonderful Chair and welcoming me into his office every time I appeared with a question or problem. I would like to thank Dr. Paul Smith for answering numerous questions, allowing me to search through his collection, and for all of the excellent meals he prepared over the years. Thanksgiving is never quite the same without him. Dr. Diane Tye was also a source of wisdom throughout the years (as well as lll a wonderful Chair). I thank her for being a positive role model and for all of her advice. Thanks to Dr. Cory Thorne and Dr. Philip Hiscock for answering half-formed questions and always having the time to talk. Dr. Holly Everett deserves special thanks for working on the Foodways issue of Culture & Tradition and for all of her immigration advice. Without the support of Cindy and Sharon, our support staff, I would have been lost - both literally and figuratively. They deserve special thanks for all their patience and kindness over the years. Finally, Diane Goldstein is an amazing advisor, professor, researcher, and mentor. She made me work harder than I thought possible and she forced me to acknowledge my shortcomings, yet still gave me the confidence and strength to overcome them. Thank you, Diane. Special thanks to the Newfoundland and Labrador Applied Health Centre for the funding for this project and their belief that a folklorist could do applied health research. The Stakeholders' meeting when Dr. Stephen Bornstein mentioned that he was really happy they funded me was one of my proudest moments. I would also like to thank those who helped me both out of kindness and interest in my research. Thanks to Dr. Jim Connor, Jolm Clinch Professor of Medical Humanities and History of Medicine, for opening his office door and spending hours recommending books and articles. His assistance gave me the background I needed to understand the importance of vaccination and it was his warm welcome that encouraged me to seek others for their help, such as Dr David Allison, Medical Officer of Health, Eastern Health. Dr. Allison assisted with finding infonnants and introducing me to countless IV people. His encouragement sustained me when I had difficulty finding people to interview. My thanks to Dr. Rick Cooper, Chief of Paediatrics, cannot be expressed in words. Dr. Cooper's help and suppot1 was crucial in the completion of this dissertation. I would like to thank him for his help with the project, encouraging me to speak at lectures and conferences, and his honesty. It seems every week brought word that Dr. Cooper mentioned me in a lecture or conversation, and he deserves thanks for being one of my strongest supporters. I would also like to thank the other graduate students in my department and life. Lynne McNeill, Jodi McDavid, Ian Brodie, and Lynda Daneliuk were always fmding useful information (often with an accompanied apology for adding yet another chapter to my thesis) and insight. Ginny Fugarino kept me sane with bizane tales and editing, and Jennifer Thorburn made the ultimate sacrifice by attempting to fix my bibliography and being my gym buddy. Jon Lee, in addition to his apologetic contributions, deserves thanks for responding to all my emails, tolerating my office visits, and contributing to my own folklore (and his missus deserves my thanks as well). As many who have gone before me have learned, writing a thesis is something you cannot do alone. I was fortunate enough to have "The Writing Girls": Shana, Sophia, Robin, and Kathryn. I thank them for their assistance and encouragement. I truly could not have done it without them. I would also like to thank the members of The Neighbourhood Strays Bellydance Troupe for never doubting that I would finish, even when I did. Their constant faith and cheer made Monday nights the best day of the week. v Lastly I would like to thank my family. Everyone was so encouraging through the process and never questioned why it would always take another year. My grandmother deserves my gratitude for always sending articles and words of encouragement. It always meant so much that updates on my work were worthy of being written down to share with others. A special thanks to Dr. Craig Brown, M.D., for medical advice and explanations, reading over countless drafts, and his support and love. Staying with me through comps was brave, but proposing marriage during the last year of my thesis was fearless - and it showed just how confident he is about us. Lastly, I would like to dedicate this research to my mother, who gave up so much to make sure I had evetything I needed to succeed. I am glad she considered how long it would take to do a Ph.D. when, after the first day of pre-school, I asked how much longer I had to go. Because of her I knew that anything was possible. VI Table of Contents Abstract II Acknowledgements Ill Chapter One - Introduction Introduction Objectives 10 · Chapter Construction 14 Chapter Two - History of Innoculation and Immunization 16 Early Inoculation 16 History of Medical Care and Vaccination in Newfoundland 21 John Clinch and Edward Jenner 24 Public Health, Infectious Disease, and Health Care in Newfoundland. 1814 to Present 30 Jenner and the Anti-Vaccination Movement 48 The History of the Anti-Vaccination Movement, 1798-early 1900s 52 Conscientious Objection and Anti-Vaccination Organizations 54 Forced Vaccination 63 Canada and the Anti-Vaccination Movement 67 Historic Legal Proceedings 71 Vaccine Disasters 71 Chapter Three - Folkloric Content in Lay Vaccine Narratives 78 Contamination Legends 80 VII Vaccines That Cause the Diseases They Are Supposed to Prevent 80 Vaccines That Cause Additional Diseases 83 Chemicals and Other "Unnatural" Ingredients 90 MMR and Autism 94 "Natural" Ingredients That Should Not Be in Vaccines 98 Improperly Stored Vaccines 109 Characteristics of Contamination Legends 111 Contamination NalTatives 114 What is Conspiracy Thinking? 117 Conspiracy and Belief 119 Conspiracy Thinking, Race, and Ethnicity 122 Why Are These Stories Appealing? 126 Chapter Four - Genres and Communicative Fo1ms 129 Contemporary Legend 129 Rumour 130 Personal Experience Narratives 131 Differences Between These Genres 132 Communicative Forms 139 Word of Mouth 139 The Intemet 140 How the Public Uses the Intemet 141 Why Do People Tum to the Intemet for Health Infom1ation? 143 VIII The Digital Divide 144 What are the Types of Health Seekers? 146 The Internet and "Reliable" Information 150 How Does This Affect Patients? 153 What Does This Mean for