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Framing Death: Politics, Meaning, and the Strategic Communication of Organ Donation Messages in South Carolina Jeremy T University of South Carolina Scholar Commons Theses and Dissertations 12-14-2015 Framing Death: Politics, Meaning, and the Strategic Communication of Organ Donation Messages in South Carolina Jeremy T. VanderKnyff University of South Carolina - Columbia Follow this and additional works at: https://scholarcommons.sc.edu/etd Part of the Anthropology Commons Recommended Citation VanderKnyff, J. T.(2015). Framing Death: Politics, Meaning, and the Strategic Communication of Organ Donation Messages in South Carolina. (Doctoral dissertation). Retrieved from https://scholarcommons.sc.edu/etd/3273 This Open Access Dissertation is brought to you by Scholar Commons. It has been accepted for inclusion in Theses and Dissertations by an authorized administrator of Scholar Commons. For more information, please contact [email protected]. Framing Death: Politics, Meaning, and the Strategic Communication of Organ Donation Messages in South Carolina by Jeremy T. VanderKnyff Bachelor of Arts University of South Carolina, 2007 Master of Arts University of South Carolina, 2009 Submitted in Partial Fulfillment of the Requirements For the Degree of Doctor of Philosophy in Anthropology College of Arts and Sciences University of South Carolina 2015 Accepted by: David Simmons, Major Professor Thomas Leatherman, Co-Chair, Examining Committee Marc Moskowitz, Committee Member Sara Corwin, Committee Member Lacy Ford, Senior Vice Provost and Dean of Graduate Studies © Jeremy T. VanderKnyff, 2015 All rights reserved ii DEDICATION For B.K.V., who taught me compassion, and for B.R.V. to whom I hope to pass it on. iii ACKNOWLEDGEMENTS I would like to first acknowledge the work of my committee, Drs. Leatherman, Simmons, Moskowitz, and Corwin, for their advice and encouragement in getting me through the process; Drs. Friedman and Tanner for their mentorship and opening my eyes to the world of health communication and mixed methods analysis; Cleo Mulligan for going above and beyond her duties as graduate assistant and helping me recruit in Sumter County; Lavell Thornton, for being an outstanding colleague and helping me recruit in Richland. Dr. Romel Lacson for creating both a model of research that I can only poorly emulate and helping me make the single most important introduction of my life; Brian and the South Carolina OPO community for supporting my research; Dr. Tamera Beam for letting me tag along to anatomy class; and my wonderful wife Stephanie and darling baby boy Brendan for letting me disappear for weeks to wrap up this final chapter in his education. iv ABSTRACT This study applies framing theory within a critical-interpretive anthropological context to understand how organ procurement organizations (OPOs) design messages to promote organ donation registration and how cultural factors including notions of embodiment and structural inequalities influence audiences’ processing of those messages. The first part of the study employs content analysis to deductively identify OPO-produced message frames. The second part of the study uses focus groups across South Carolina to explore audience reactions to different message frames. Themes from donors and non- donors alike reflected a mistrust of the medical establishment, a keen awareness of structural inequality, and complex notions of embodiment that may be responsible for low donor designation rates. I propose a new model of organ donation registration behavior that incorporates these cultural factors and recommend that effective messaging should first address cultural mistrust of the U.S. healthcare system. v PREFACE “Please don’t bury me Down in that cold, cold ground No, I’d rather have 'em cut me up And pass me all around Throw my brain in a hurricane And the blind can have my eyes And the deaf can take both of my ears If they don’t mind the size Give my stomach to Milwaukee If they run out of beer Put my socks in a cedar box Just to get 'em out of here Venus De Milo can have my arms Look out! I've got your nose Sell my heart to the junk man And give my love to Rose” -John Prine, “Please Don’t Bury Me” vi Gerald is dead. I can easily tell that Gerald is dead because Gerald, unlike the other dead people I have seen, cannot be mistaken for anything except dead. He is not coated in makeup and placed delicately in an unnecessarily cushioned box as if he were merely sleeping. He is not meticulously posed as a runner captured in mid-sprint, as are the plastinated human models of Gunther von Hagens’ Body Worlds. He lay instead unadorned on a metal table as two first-year medical students—for lack of a more apt medical description—peel him with scalpel and scissors. Forceps and formaldehyde are his grave goods for now, and plastic freezer bags his canopic jars. Other than his name, I know three things about Gerald: that he is (was?) 49 years old, that he was a “manager,” and that cancer claimed his life. Gerald may well have a fascinating life story; perhaps he climbed Everest in his youth, or coached his daughter’s soccer team, or was an amateur magician. But I do not need fantastical conjecture to realize, within minutes of making his acquaintance, that Gerald has changed my life. ................................................................................................................................................ I have never been drawn, as a rule, to the morbid. As a teen, I did not hang out in cemeteries. To this day, I devise clever excuses to avoid seeing horror movies with friends. After personal experiences with death, I came to appreciate life rather. It was instead mere curiosity—and perhaps a little boredom—that compels me to accept a friend’s invitation to spend a sunny Saturday morning in August with her in a medical school anatomy lab. Her professor would be present to assist students in reviewing for an upcoming exam, and after ensuring that I would follow basic rules of conduct (no photography, no food and drink, no interfering with future physicians, and no vii disrespecting the dead), he points me to a box of nitrile gloves, tunes an old boombox to the 80’s pop station, and leaves me with my friend, her lab partner, and Gerald. My friend pats Gerald affectionately on the forehead. “Good morning, Gerald. How are you today?” she asks politely, although clearly not expecting a response. In that instant, she reminds me of Gerald’s humanity, which I was all too quick to dismiss under a pretense of clinical detachment. Gerald is a person—a hero, if you will—who in a time of personal crisis made a difficult (it would be for me, anyway) decision to donate his body such that others could learn from it and someday use that knowledge to save lives. I cannot help but romanticize the choice he makes and imagine agonizing conversations with his wife and kids or with the anatomy professor who, I now realize, has met, talked with, and perhaps cried with every person lying on a table in this room when they still they drew breath. Gerald makes me think, for the first time, about the afterlife—not of harps or Hades or questions of the soul, but of what will happen in the corporeal realm when my heart stops beating and my brain stops thinking. What will become of the pieces of me that are left, and will I have the presence of mind and strength of character to make a choice like Gerald’s? And is there some inherent contradiction to thinking of these pounds of flesh in front of me as “Gerald” when Gerald himself had clearly decided for himself that his humanity—his Geraldness, if you will—would be separated from his body at death? This brings me to organ donation. I have been an organ donor since I was 15 years old. The argument for so becoming, courtesy of my parents, is, for me, still the most convincing: there is no good reason not to register as a donor. The thought that went into my decision was so scant that, upon reflection, I realize I spent more time deciding viii whether or not to smile for my driver’s permit photo than I did contemplating my own mortality. In the intervening years, however, I have become utterly fascinated by the topic and the ethical, economic, and anthropological questions it raises. I am drawn to it because the simplicity of the registration process masks so well the complexity of the decision it signifies. I am a donation advocate not because I believe everyone should donate, but because I believe not everyone should. When asked whether I believe individuals should be allowed to sell kidneys, I can rattle off a half-dozen well-reasoned arguments from prominent thinkers on both sides of the issue and tell you where you could get the best price for your own, yet cannot for the life of me articulate my own opinion on the matter. Given the life-altering effects of an organ transplant—from quality of life to financial burden to moral confusion—I do not even know if I would opt for a transplant should I ever need one, yet I would gladly donate my organs to a stranger in a heartbeat (were my doctor quite certain that heartbeat is my last). At an awareness event held by Donate Life South Carolina, the emcee asked the audience: who among us were organ recipients or family of organ recipients? A number of people raised their hands. Who among us were live donors or family of deceased donors? The rest of the crowd raised their hands. Mine remained at my side. I have no strong personal connection to donation. I have no family or friends who are organ recipients and have never sat in an intensive care unit with a loved one lying before me, facing the heartbreaking decision to donate her organs.
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