Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life A dissertation presented to the faculty of the Scripps College of Communication of Ohio University In partial fulfillment of the requirements for the degree Doctor of Philosophy Nicole C. Eugene August 2017 © 2017 Nicole C. Eugene. All Rights Reserved. This dissertation titled Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life by NICOLE C. EUGENE has been approved for the School of Communication Studies and the Scripps College of Communication by William K. Rawlins Stocker Professor of Communication Studies Scott Titsworth Dean, Scripps College of Communication ii Abstract EUGENE, NICOLE C., Ph.D., August 2017, Communication Studies Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life Director of Dissertation: William K. Rawlins Research on narcolepsy tends to highlight negative features of the condition while not including the perspectives of people with narcolepsy. This dissertation sought to represent narcolepsy in a way that put the subjective experience of narcolepsy in conversation with the medical language about narcolepsy while collecting narratives of how people with narcolepsy navigate everyday life. A hidden disability like narcolepsy exists within contexts that may obscure apparent differences between individuals. An in situ approach to researching hidden disabilities considers the way physical and discursive contexts shape what is knowable about another person’s capacities. Narcolepsy causes people who have it to have difficulty in matching the spatiotemporal rhythms of society. Using the feminist disability studies concept of misfit and performance studies concepts about uncovering hidden meanings and evocative writing I designed a research project that included in-depth interviews with people who have narcolepsy, participant observation with a local narcolepsy support group and autoethnographic writing. Case study interviews were analyzed using interpretive phenomenological analysis. The analysis portion of the dissertation includes one autoethnography on the intertwined relationships between identity, place and sleep and four chapters that highlight four places where people with narcolepsy wrestle with narcolepsy and the challenges of managing it. The narratives about narcolepsy highlight how meanings of narcolepsy are iii socially constructed through communicative interactions around symptoms and treatment. The dissertation concludes by reflecting on how sleep medicine can play a larger role in the social construction of narcolepsy in everyday life by revising some of the language used in medical discourse and by improving patient and family education. iv Dedication This is dedicated to the loving memory of Peter Raposo. v Acknowledgments As a first-generation college graduate, I have a lot of people who I would like to acknowledge. In keeping with the narrative form, these acknowledgements will also tell the story of my growth as a scholar and as a person. First, I would like to acknowledge my parents who discovered my sleepiness before I was diagnosed. My father’s endless curiosity and love of learning continue to inspire me in my research. I am especially thankful for my mother’s love and for her support of my adventures in learning throughout the years. I would also like to express my appreciation for having three beautiful sisters who have loved and supported me in all my endeavors—even if that meant they had to do the driving. I would like to acknowledge Pastor John Ogletree, Jr. whose love of religious scholarship made Sunday morning both spiritually fulfilling and intellectually stimulating while growing up. It was at his church where I met my two-other college-bound black young women who would become lifelong friends—Jannica Cox and Brittany Kennedy; thank you for your friendship throughout the years. I would like to acknowledge Bruce Wade and Mona Philips at Spelman College for planting in me passion for research on social issues while also being exceptional models of in their teaching and service. While attending Spelman College, Ronald McFadden invited me to participate in the Ronald McNair Scholars Summer Program at the University of Tennessee at Knoxville where I received encouragement to pursue a graduate education and eventually a PhD. The McNair Scholars Program is a federal TRIO program designed to help prepare undergraduates for doctoral education and vi thereby increasing the number of graduate degrees awarded to underrepresented populations. I want to express my appreciation of Erin F. Labbie, at Bowling Green State University (BGSU) for her role as the advisor for my Master’s thesis on the cultural dimensions of sleep in society. I am incredibly thankful for the guidance and mentorship Matt Wolf-Meyer, a fellow BGSU American cultural studies department graduate. Always one step ahead, he provided empathy as a person, who was keenly aware of the struggles I faced, while also encouraging autoethnographic reflections on what I experienced as a person with narcolepsy. At times, studying sleep can feel isolating, which is why I treasure having been invited by Brigittee Steger to share research from my Master’s thesis at a workshop in Vienna with group of researchers from around who were studying sleep. I am indebted to Donald H. McQuarie for his gracious support of my research while at BGSU and his enthusiastic support of my return to academia after being away for several years. During my academic hiatus in Houston, I had the opportunity to work with Carl Lindahl and Pat Jasper, who founded and directed the Surviving Katrina and Rita in Houston Project. I continue to strive towards the ideals that project actualized as a researcher and community member. I also must thank Diana Bowen who introduced me to communication studies while I scouted for books to sell as a self-employed bookseller. She encouraged me to consider communication studies because of the many overlaps with American cultural studies and sociology. vii My time at Ohio University has been a rollercoaster ride, and I really appreciate being able to share the some of the bumps and thrills with my friends Sarah Parsloe and Zamzam Jama. I would also like to thank Sarah for her help during the writing process. I would be a hermit without Zamzam to pull me out of my shell to enjoy my time in Athens—I have always needed people to remind me of the world outside of my work. I would have had a lonely first year in my PhD program if it was not for Aarti Arora’s mentorship and companionship. I would also like to recognize my friend and mentor Jenny Nelson who made sure I did not feel alone in my unique differences. At Ohio University, I have benefited greatly from mentorship and guidance from Ben Bates, Judith Lee, Yea-Wen Chen, Adah Ward Randolph, Sherrie Gradin, Ron Jackson, and Austin Babrow. I am also indebted to Henry Wood and Andew Ladd for their trust and support. I must also express my appreciation for the support I received from the people at Ohio University who help people with disabilities succeed as students and as instructors. Daryl Purdy made it possible for me to thrive in the graduate program, and so I am forever grateful for his work and activism. I would also like to acknowledge Megan Cameron, Jennifer Romero, and Kerri Griffin for their role helping me while at Ohio University. I would like to thank Laura Ellingson for her mentorship and guidance as a fellow feminist health communication researcher with a disability. I am happy to also thank Michael Butterworth and the School of Communication Studies for providing financial support for my many of the trips to and from Columbus. viii I also benefited from audience comments and conversations at Coe College and the University of San Francisco. I especially would like to thank Nate Hodges for sharing his stories of navigating his final year and for demonstrating how to use evocative autoethnography to address issues of health and inequality. I would like to express appreciation for thoughtful and emboldening feedback on Chapter Two I received from Dan Strasser as a respondent at the 2016 Eastern Communication Association conference. I also received valuable feedback and encouragement on Chapter Four from Julie Ann Scott-Pollock, who I also treasure as a fellow communication and performance scholar interested in hidden disabilities. My dissertation committee, Lynn Harter, J.W. Smith, and Risa Whitson have been courageous sources of inspiration and guidance during my time at Ohio University. My advisor, William K. Rawlins, has a has done a masterful job at setting the beat for this jam session, and I am honored to be able to keep the music playing throughout the rest of my measures. ix Table of Contents Page Abstract .............................................................................................................................. iii Dedication ........................................................................................................................... v Acknowledgments .............................................................................................................. vi List of Tables ................................................................................................................... xiii List of Figures .................................................................................................................. xiv Chapter 1: Exploring Communication About Narcolepsy .................................................