“A Little Sugar”: Interactions between Professional and Lay Understandings in Diabetes Education Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy in the Graduate School of The Ohio State University By Sheila Marie Bock, MA Graduate Program in English The Ohio State University 2010 Dissertation Committee: Dorothy Noyes, Advisor Katherine Borland Diane Goldstein Amy Shuman Copyright by Sheila Marie Bock 2010 ABSTRACT This dissertation brings together critical and applied traditions in folklore studies to examine the potential of a performance-based methodology in diabetes health education. Beginning with an examination of health educators’ increasing attention to culture, I suggest that this “cultural turn” has opened up opportunities for educational practices that attend to the variety of resources people draw upon to make sense of diabetes. Using the tools of performance theory to analyze health education as performance, I reveal the educational value of creating spaces of dialogue where health educators and community members can engage explicitly with these multiple perspectives. This project is based on fieldwork conducted between 2006 and 2009 on a variety of health education initiatives targeting at-risk populations in Central Ohio. Focusing my analysis on performances of personal experience narratives in formal and informal health education settings, I show how the dialogic nature of these performances does valuable work in helping other individuals make sense of their own experiences and inspire healthy lifestyle changes. At the same time, I raise questions about the assumptions underlying their messages as well as the limits of particular performance strategies for different audiences. ii Ultimately, I argue that unscripted dialogue presents opportunities for effectively engaging with the process of how people create interpretive frameworks that accommodate different experiences and ways of knowing. Contestations and evaluations of knowledge claims are already taking place implicitly. It is therefore in the best interest of health educators not only to be aware that these evaluations are happening but to be open and willing to engage with them respectfully in face-to-face encounters. A performance-based methodology focused on creating spaces for explicit contextualization and response would contribute greatly to the work of health professionals engaged in the fight against diabetes. iii ACKNOWLEDGMENTS I would first and foremost like to express my sincere gratitude to all the individual community members and health professionals who took the time to share their insights with me during the course of my fieldwork. Without their willingness to share their time and their stories, this dissertation project would not have been possible. I wish to offer a special thank you to Robbie McCauley, whose commitment to community engagement through her performance works planted the seeds for this research project. I also wish to thank the following centers and departments at The Ohio State University for financial support that made my research and writing possible: Center for Folklore Studies, Department of English, Department of African American and African Studies Community Extension Center, College of Arts and Humanities Diversity Committee, Project Narrative, Department of Comparative Studies, and Literacy Studies. Writing a dissertation is not an easy task, and I am especially grateful to my chair, Dr. Dorothy Noyes, and the other members of my committee – Dr. Katherine Borland, Dr. Diane Goldstein, and Dr. Amy Shuman – for offering encouraging words, closely reading drafts, and asking the guiding questions that helped me figure out what I was really trying to say. In addition, Dr. Sabra iv Webber, Barbara Lloyd, Dr. Patrick Mullen, Dr. Ray Cashman, Dr. Margaret Mills, and my fellow members of the Folklore Student Association have greatly contributed to my development as a scholar through inspiring courses and conversations during my time at Ohio State. Of course, I must also offer my gratitude to Dr. Alan Dundes, whose “Forms of Folklore” course and subsequent mentorship at UC Berkeley was my entry point into the wonderful world of folklore. Finally, many thanks go to my family. It is difficult to put into words my appreciation for my mom, dad, and sister Tammy, who never cease in their unwavering support of what I do. Last but not least, I would like to thank my husband Michael, who I am so lucky to have as a partner in my life. v VITA 2003 ……………………………….. Bachelor of Arts in Anthropology, University of California, Berkeley 2005 ……………………………….. Master of Arts in Comparative Studies, The Ohio State University Autumn 2004 - Winter 2010…….…. Graduate Teaching Associate, Departments of English and Comparative Studies, The Ohio State University Autumn 2005 - Spring 2008 …………Graduate Administrative Associate and Archivist, Center for Folklore Studies, The Ohio State University Winter 2010 ……………………….. Dissertation Fellow, Department of English, The Ohio State University Autumn 2010 ………….................... Adjunct Faculty, Department of English, The Ohio State University (Newark) Publications “Exotic Identities: Dance, Difference, and Self-fashioning,” co-author Katherine Borland, Journal of Folklore Research 48:1(2011). Book review. Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma, edited by Valerie Raoul et al., Western Folklore 68.2/3(2009): 390-391. "State Jokes." The American Midwest: An Interpretive Encyclopedia. Eds. Richard Sisson, Christian Zacher, and Andrew Cayton. Bloomington: Indiana University Press, 2006. 402-403. vi Fields of Study Major Field: English Minor Field: Folklore vii TABLE OF CONTENTS Abstract ................................................................................................................... ii Acknowledgments.................................................................................................. iv Vita ........................................................................................................................ vii Chapter 1: Introduction……………………………………………………………1 Chapter 2: “A Type 1 Diabetic is Just Walking Down the Street…”: Contextualizing Practices in Fieldwork Encounters ........................................... 433 Chapter 3: “My Diabetes Story”: A Comparative Look at Contextualization .... 722 Chapter 4: Speaking as The Biggest Loser: Experience and the Paradigm of Expertise ............................................................................................................. 100 Chapter 5: “Grappling to Think Clearly”: The Vernacular Theorizing of Sugar.. ........................................................................................................................... 1322 Chapter 6: Conclusion ........................................................................................ 162 Bibliography ....................................................................................................... 175 Appendix A: Transcription Conventions ............................................................ 197 viii CHAPTER 1: Introduction What’s “Pulling the Trigger”? Identified by Newsweek in 2000 as “the next great lifestyle-disease epidemic to afflict the United States,” Type II diabetes has joined the ranks of cancer, heart disease, and obesity, garnering increased attention in both the public eye and the world of health professionals. 1 While diabetes is understood to have several causes, including genetic predisposition, its designation as a lifestyle disease calls primary attention to the idea that the disease is not merely caught, but acquired through a lifetime of poor eating and exercise habits (Crawford 1987); in short, it is understood as a disease that is ultimately preventable. One phrase neatly sums up this perspective, a phrase attributed to Dr. Frank Vinicor of the Center for Disease Control and often quoted in health promotional materials and media stories about the disease: “Genetics may load the cannon, but human behavior pulls the trigger.” The question that follows, then, a question of great interest to 1 Diabetes refers to a condition where the body does not regulate blood glucose levels effectively, and there are three different types of the disease. Type 1 diabetes, formerly referred to as Juvenile Diabetes because it most often affected children and young adults, is caused by an autoimmune response which causes the pancreas to be unable to produce insulin, a hormone necessary for regulating blood glucose levels. Type 2 diabetes, formerly referred to as Adult Onset Diabetes, occurs when the body creates insulin but is unable to utilize it effectively. Gestational diabetes is a form of the disease which occurs during pregnancy for some women. In this dissertation, unless otherwise noted, the term diabetes refers to type 2 diabetes. 1 laypersons, health professionals, and policy makers alike, is this: What is the source of this behavior that, metaphorically speaking, pulls the trigger? One common explanation circulating in public discourse is that Type 2 diabetes is caused by a lack of individual control (Broom and Whittaker 2004). Consider the following online responses posted to Tara Parker-Pope’s 2009 New York Times piece entitled “The Voices of Type 2 Diabetes,” which included photographs and audio- recordings of six people with Type 2 diabetes talking about their personal experiences: o “My grand daughter has diabetes type 1. At 13 she has