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Self-Advocacy and Collective/Connective Action on The “Real People. Real Stories.”: Self-Advocacy and Collective/Connective Action on the Digital Platform, The Mighty 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 Sarah M. Parsloe August 2017 © 2017 Sarah M. Parsloe. All Rights Reserved. This dissertation titled “Real People. Real Stories.”: Self-Advocacy and Collective/Connective Action on the Digital Platform, The Mighty by SARAH M. PARSLOE has been approved for the School of Communication Studies and the Scripps College of Communication by Austin S. Babrow Professor of Communication Studies Scott Titsworth Dean, Scripps College of Communication ii Abstract PARSLOE, SARAH M., Ph.D., August 2017, Communication Studies “Real People. Real Stories.”: Self-Advocacy and Collective/Connective Action on the Digital Platform, The Mighty Director of Dissertation: Austin S. Babrow People with disabilities have long been under-represented and misrepresented in mainstream media, and have sought strategies to contest discourses of difference that frame disability as a pitiable tragedy, a burden, or a source of inspiration used to make non-disabled people feel better about their own lives. With the advent of the internet and the increasingly participatory character of the media landscape, people with disabilities are now more able to generate and circulate a counter-narrative—one which draws on the social model of disability to highlight the ways in which stigmatizing and oppressive responses to different bodies create and perpetuate marginalization. However, the disability community is far from monolithic. In addition, the line between “chronic illness” and “disability” remains blurry. Thus, as individuals engage in self-advocacy and collective/connective action by publicizing their stories, they draw from varied discourses of difference that preserve or resist medicalization. Similarly, advocates organize to pursue potentially conflicting goals. The resulting tensions of representation and organization are particularly apparent in the case of The Mighty, a for- profit media company that publishes stories submitted by people with disabilities, chronic illnesses, and mental health conditions. This site has become an increasingly popular resource for some members of the disability community. At the same time, it has also iii become a site of contention and has received criticism from disability activists who protested its publishing practices via the hashtag initiative, #crippingthemighty. For this dissertation project, The Mighty served as a context to explore how public performances of self-advocacy in digital spaces link to connective/collective action. Taking a constructivist approach to grounded theory (Charmaz, 2006), I analyzed interviews with Mighty staff members (14 participants), Mighty contributors (29 participants), and #crippingthemighty activists (2 participants) and conducted a textual analysis of 213 Mighty articles and 22 #crippingthemighty blog posts. In Chapter 4, I explored how individuals engage in sense-making processes (re)construct both individual and collective identities in ways that reflect varied discourses of difference and multiple forms of problematic integration (PI; Babrow, 1992). In Chapter 5, I conceptualized the nature of refracted self-advocacy, collective self-advocacy, allyship, and collective action. I also provide a typology of collective goals that animate advocacy and activism. In Chapter 6, I build on Giddens’ (1979) structuration theory and Ashcraft’s (2001, 2006) description of paradoxical hybrid forms to consider how Mighty staff members communicate in ways that constitute and manage three sets of dialectical tensions. Chapter 7 offers an analysis of #crippingthemighty, describing disability activists’ response to tensions and ableist structures apparent on the The Mighty, their conceptions of allyship, appropriation, and dialogue (Bakhtin, 1981; Buber, 2010), and their use of Twitter to engage in cyberactivism. Finally, Chapter 8 offers theoretical and practical implications, limitations and directions for future research, and some personal reflections of the nature of academic allyship. iv Dedication I dedicate this dissertation project to my participants. Thank you for sharing your time, your work, and your stories. v Acknowledgments All that I have accomplished in my life, I have done with help from allies. Allies taught me the skills I needed to reach for my goals; they recognized my own potential when I could not see it myself; they celebrated with me in moments of triumph and held me in moments of despair; and, most importantly, they asked me to pause mid-sprint to look around at the beautiful, ephemeral, poignant details of a life well-lived. I have many allies to thank, but I mention just a few of them here. To my advisor, Dr. Austin Babrow: you have convinced yourself that you were merely a spectator in this dissertation process, but that is far from the truth. I have been learning from you since the first time I met with you in Lasher Hall. I came to Ohio University because of that meeting—because your passionate curiosity reverberated with my own, and because your genuine interest in my work helped me to believe that it was work with doing. You have advised me throughout these four years, often without knowing it. You have shown me what it means to be a rigorous scholar, an engaged mentor, and a humble, ethical, kind human being. Thank you for being my first co- author. Thank you for spending time with me each week on the phone and in your office, thinking together about the developing outline for this dissertation. Those were some of the most gratifying intellectual conversations of my graduate career. Thank you for never doubting me, even when I faltered. Earning your respect is one of my most cherished accomplishments, because I respect you more than I can say. To my first advisor at Ohio University, Dr. JW Smith: some of my fondest memories from graduate school will be from times spent with you in laundromats, diners, vi and Buffalo Wild Wings. Thank you for being my comedic relief and my confidant. I hope that you will visit me in Florida so that we can share a fancy meal (my turn to treat!), drink wine, and put our feet in the sand. To my thesis advisor and continual mentor, Dr. Patricia Geist-Martin: you are the person who introduced me to health communication, qualitative research, and feminist scholarship. You helped me to imagine my capacity to become a teacher-scholar. From you, I have learned what it means to enact the vulnerable, emotional, mutually-validating labor of love that is feminist mentorship. Thank you for always being there to provide advice and to celebrate achievements. I am grateful for our continued friendship, and I look forward to our future collaborations. To my professors at Ohio University and at San Diego State University: thank you for providing me with your support and your academic expertise. I would like to acknowledge the remaining members of my dissertation committee, Dr. Brittany Peterson, Dr. Stephanie Tikkanen, and Dr. Risa Whitson, for their guidance and advice regarding this dissertation project. Thanks especially to Stephanie for including me in your work with the Sturge-Weber Foundation, for opening up your home to me when I was struggling, and for gifting me with lucky toffee (it worked!). Thanks also to Dr. Charee Thompson for inviting me to work on the crying wolf project. Your interest in why people doubt and are doubted in healthcare contexts has informed this dissertation project, and I am excited to work with you as we continue to develop this line of research. I would also like to acknowledge Dr. Beck, Dr. Chawla, Dr. Harter, and Dr. Rawlins for teaching me about the nature of qualitative research, interpretive theory, vii narrative, dialogue, and health organizing. Your scholarship has infused my own, and your guidance helped me to move from confusion to clarity. Thanks also to my academic auntie, Dr. Laura Ellingson. I hope to emulate your generous, optimistic spirit. Finally, thank you to my undergraduate mentor, Dr. Cochece-Davis, who encouraged me to apply to my very first academic conference and who fueled my grad school aspirations. To my cohort members, Lanie Presswood, Kristen Okamoto, Steve Granelli, Sean Gleason, Sidi Becar-Meyara, and Nicole Eugene—we made it! Thanks especially to Nicole for being a steadfast friend, even when I did not always return the favor. You are the most tenacious person I know. I’d also like to acknowledge my writing buddies, Rebekah and Hanan. I’m very proud of your successes, and I wish you the best of luck as you push forward. To my friends: thank you for filling my life with laughter. I am especially grateful for my roommate, Kelly Choyke (and her cat, Captain). Thank you for the farm walks, for nights with boxed wine and (discounted) fancy cheese, for impromptu dance parties, and for always reminding me that I am worthy of friendship. Thanks also to my townie friend, Dr. Suzanne Pennington, for encouraging my inner goofball and for reminding me how beautiful Southeast Ohio really is. Thank you to all of the long-distance friends who supported me from afar and welcomed me back, especially the San Diego Beer Club, the “enginerds,” Christi Sheehan, and Cynthia Dagenais. Finally, thank you to my first grad school friend, Melissa Lucas. You were the best Europe travel companion, TAG teammate, and brunching partner. I am so grateful for the continued connection we’ve shared while contending with the (un)expected challenges of academic life. viii To Mom, Dad, and Doug: your love sustained me throughout this grad school journey. Mom—the first Dr. Parsloe—as I have grown into an adult I have become even more aware of how important it was for me to see your success as a competent, respected, professional woman. Watching you has given me the strength to pursue my own ambitions.
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