THE NARRATIVE CONSTRUCTION OF BREAST CANCER: A COMPARATIVE CASE STUDY OF THE SUSAN G. KOMEN FOUNDATION AND NATIONAL BREAST CANCER COALITIONS’ CAMPAIGN STRATEGIES, MESSAGES, AND EFFECTS A dissertation presented to the faculty of the College of Communication of Ohio University In partial fulfillment of the requirements for the degree Doctor of Philosophy Amanda M. Olson August 2005 This dissertation entitled THE NARRATIVE CONSTRUCTION OF BREAST CANCER: A COMPARATIVE CASE STUDY OF THE SUSAN G. KOMEN FOUNDATION AND NATIONAL BREAST CANCER COALITIONS’ CAMPAIGN STRATEGIES, MESSAGES, AND EFFECTS BY AMANDA M. OLSON has been approved for the School of Communication Studies and the College of Communication by Nagesh Rao Associate Professor and Interim Director of Communication Studies Gregory Shepherd Interim Dean, College of Communication OLSON, AMANDA M. Ph.D. August 2005. Communication Studies The Narrative Construction of Breast Cancer: A Comparative Case Study of the Susan G. Komen Foundation and National Breast Cancer Coalitions’ Campaign Strategies, Messsages, and Effects (196pp.) Director of Dissertation: Nagesh Rao The goal of this research is to reveal the connections, contradictions, tensions, and paradoxes inherent in the narratives of breast cancer created by the Susan G. Komen Breast Cancer Foundation and the National Breast Cancer Coalition by exploring three research questions: Q1: How do the Susan G. Komen Breast Cancer Foundation and the National Breast Cancer Coalition perform a narrative of breast cancer at their respective events? Q2: How are these performed narratives shaped by the cultural and historical context of breast cancer awareness in the United States? Q3: How do these performed narratives shape current breast cancer awareness in the United States. In addressing these questions, the historical and cultural roots of breast cancer campaigns in the US are addressed, as well as current narrative health communication scholarship. The organizational stories are told through ethnographic thick descriptions and analyzed using Goffman’s Frame Analysis to reveal narrative structure, cultural and historical themes, and speculate about the future of breast cancer awareness efforts in the US. This study serves as a record of events, a model of culturally and historically based narrative research, and a demonstration of how narrative theories can extend beyond the scope of a single author and explain collective authorship as well. Reframing narrative scholarship in this way expands on current theories and offers a new perspective for analyzing the ways that we communicate about health-based narratives Approved: Nagesh Rao Associate Professor and Interim Director of Communication Studies Acknowledgments I wouldn’t be here today if it weren’t for the support of many people that I would like to thank and acknowledge: Thank you to my parents, Karen and David Olson, and my brother, Erik for all of your love and support. Thank you to the rest of the Olsons and the Beldens for cheering me on. Thank you to Chris True for keeping me on track. Thank you to Allison Fritscher, Teodora Carabas, Pam Royse, Autumn Edwards, and Sarah and Andy Douglas for being the best friends a person could ever hope for. Thank you to Dawn Carusi for driving to that first Race for the Cure with me. Thank you to Nancy Goulden and Jerry Pepper for believing in me. Thank you to Greg Shepherd for helping me find a home in Ohio. Thank you to Nagesh Rao for endless encouragement. Thank you to Lynn Harter and Jackie Wolf for helping me make this a better project. And thank you to all of the women who shared their stories, their courage, and their wisdom with me throughout my breast cancer research – especially the members Northeast Ohio Breast Cancer Coalition – their friendship and trust made all the difference. 6 Table of Contents Page Abstract...........................................................................................................................3 Acknowledgments...........................................................................................................5 Chapter 1. Breast Cancer Campaigns in the United States................................................7 Prologue: Discovering Pink Ribbons....................................................................7 The Breast and Breast Cancer ............................................................................11 Understanding the Female Breast.......................................................................11 Cancers of the Breast .........................................................................................16 Historical Overview of Breast Cancer Campaigns..............................................27 Chapter Summary ..............................................................................................44 Chapter 2. Performances and Contexts of Narrative Inquiry ..........................................46 The Power of Stories..........................................................................................46 Narratives of Health and Illness .........................................................................49 Narrative as Performance...................................................................................64 Contexts of Performance: Komen Foundation and the NBCC ............................77 Chapter Summary ..............................................................................................83 Chapter 3. Method of Inquiry ........................................................................................84 The Practice of Ethnography..............................................................................85 Data Analysis ....................................................................................................92 Chapter 4. Ethnographic Data........................................................................................94 Thick Description of the Race for the Cure ........................................................94 Thick Description of Annual Advocacy Training Conference .......................... 106 Chapter 5. Results and Conclusions............................................................................. 134 Introduction ..................................................................................................... 134 Frame Analysis of the Race for the Cure.......................................................... 134 Frame Analysis of the National Breast Cancer Coalition Conference ............... 144 Interpreting Results.......................................................................................... 156 Conclusions ..................................................................................................... 179 Limitations and Final Thoughts........................................................................ 185 References................................................................................................................... 188 7 CHAPTER ONE BREAST CANCER CAMPAIGNS IN THE UNITED STATES Prologue: Discovering Pink Ribbons Clipped to my refrigerator is a white slip of paper with a large, official-looking number on it - 496. This was the race number from my first “Race for the Cure” 5 kilometer run/walk. The Race for the Cure is a fundraising event sponsored by the Susan G. Komen Breast Cancer Foundation. I keep it because it represents several firsts for me: The first time I enjoyed running. The first time I entered a race. The first community event I attended after moving to the small town of Nelsonville, Ohio. And, the first time I witnessed the selfless passion of many Race for the Cure participants who demonstrate through physical effort the degree to which they care about fighting breast cancer. As one woman said, “if my sister can go through chemotherapy, there’s no reason I can’t run up that hill.” It was at that moment I realized that this was more than just a race. The small, local Race for the Cure that I witnessed that morning in the summer of 2001 made me realize the power breast cancer awareness campaigns have to influence us personally and shape our perceptions and emotions regarding this disease. Breast cancer awareness is inescapable: Komen’s Race for the Cure events draw more than one million participants annually to their 5K fitness run/walks (About Komen: Facts and Figures, 2002). Beyond special fundraisers, our daily lives are saturated with pink ribbons and cause-related marketing ranging from lids on Yoplait yogurt containers to pink KitchenAid mixers. Countless women’s magazines also take up the cause, as well as television programming like The Oprah Winfrey Show, and Murphy Brown. We are 8 inundated with messages that tell us not only to keep thinking about breast cancer, but how we should think about breast cancer. The magnet that holds my Race for the Cure number to my refrigerator is a constant reminder of the forces that shape our thinking. The magnet bears a picture of a pink bulldozer pushing dirt and a caption that says: “[Not just ribbons]” (brackets in original). It is an ad for the National Breast Cancer Coalition (NBCC), reminding us that “pushing in the right direction” is what it takes to eradicate breast cancer. This magnet is important, because it represents the critical shift in thinking that led me to this research project. When I first discovered the NBCC’s website, I believed that this organization worked against all the good that the Komen Foundation was doing. Their position paper