FROM GENDER-AFFIRMING CARE TO TRANS-AFFIRMING CARE: Trans Youth Discourses of Healthcare Access Alic G. Shook A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Washington 2020 Reading Committee: Ira Kantrowitz-Gordon, Chair Doris Boutain Marieke van Eijk Program Authorized to Offer Degree: Nursing ÓCopyright 2020 Alic G. Shook University of Washington Abstract FROM GENDER-AFFIRMING CARE TO TRANS-AFFIRMING CARE: Trans Youth Discourses of Healthcare Access Alic G. Shook Chair of the Supervisory Committee: Ira Kantrowitz-Gordon School of Nursing Transgender youth in the United States face intersecting forms of societal marginalization and discrimination that places them at higher risk for disparate health outcomes compared to their cisgender peers. Access to care is known to improve long-term health outcomes among transgender adolescents, yet existing studies demonstrate that few youth receive transgender-affirming services. The overarching goal of this study was to better understand the healthcare-seeking experiences of transgender youth under 18 (both with and without parental support), highlighting how youths’ perspectives might challenge existing ideas in health research and practice about what constitutes equitable access to care in this population. The present study was comprised of three interrelated analyses. The first analyzes the discursive framing of contemporary transgender youth in the existing healthcare literature by applying discursive analytic methods to a small, purposely assembled sample of 10 articles in which ideas about the diagnosis and treatment of transgender youth are presented, discussed, and evaluated. The second utilizes discursive analytic methods and principles of community-based participatory research to analyze data from interviews with self-identified transgender youth between the ages of 13 to 17 (n=11) and parents of transgender youth (n=6) to better understand how youths’ transgender identity and legal status as minors impacted their ability to access health care or influenced the quality of care they received. Youth participants were invited to participate as members of the data analysis team. Two of the 11 youth participants served as data analysts. The third and final analysis integrates the perspectives of 8 additional trans youth who participated in a focus group regarding access to care for transgender minors and utilizes discursive analytic methods to evaluate how notions of age, consent, and autonomy influenced youth’s ability to access care and their inclusion in informed consent processes. Findings from this study suggest that a shift in research paradigms is needed for sufficiently addressing the health disparities facing trans youth, especially those most likely to experience inequitable access to care, particularly poor transgender youth, transgender youth who lack parental support, and transgender youth of color. Dedication This dissertation is dedicated to the memory of Lou Sullivan, who died from complications due to AIDS in San Francisco, California on March 2, 1991. “When people look at me I want them to think – there’s one of those people…that has their own interpretation of happiness. That’s what I am”. -Lou Sullivan Acknowledgments My deepest gratitude and respect to the nineteen young people that volunteered their time and shared their experiences with me. To everyone that made the time to meet with me and talk with me, that invited me into their homes, that offered me food, that spent time and energy communicating with me to arrange interviews or answer follow-up questions over e-mail – thank-you! To the people in Seattle and beyond that supported the logistics of this research project and made time to share your perspectives, offered feedback, made space for me, and made connections at varying stages of this project: Chris Brown, Nicholas George, Sasha Duttchoudhury, John Farley, Morgan Darby, Aidan Key, Eyva Winet, Genya Shimkin, Kendra Liljenquist, Britt Murphy, and Jeremy Miller. To all of the individuals at schools and organizations throughout the Seattle-Tacoma area who helped me secure safe interview space to meet with youth when they chose to interview without their parents present. To Diana Tordoff – for being a witness, an ally, a co-conspirator, a teacher, and a friend. To April Clark, Robin Hardwick, and Will St. Pierre Nelson – for taking a chance on me and agreeing to be part of the analysis and manuscript development phases of this project. Dean Weiler – for the gift of your incredible artistic talent, which brought the experiences and perspectives of participants to life at presentations and conferences; your work engaged people in a way that I would never have been able to do without your illustrations! To Billy Rosa – for entering my life at the exact moment I needed you and for being a witness and a mirror during the dissertating stage of this process. To the members of my committee – Drs. Ira Kantrowitz-Gordon, Doris Boutain, Marieke van Eijk, and Helene Starks – for your steady support throughout my doctoral experience, for your thoughtful feedback, for contributing your insights, experiences, and expertise, and for being my pacers. To Dr. Amanda Swarr – for your encouragement early in the process of this research. To Dr. Selina Mohammed – for taking the time to meet with me, listen to me, and think with me at pivotal points over the last three years. This research was made possible by generous funding and support from the Robert Wood Johnson Foundation Future of Nursing Scholars Program. To Heather Kelley, Amanda Bastelica, Samantha Fotos, and Drs. Julie Fairman and Kathy Dracup – for believing that I was valuable and helping me navigate the highs and lows of this process. Additional funding support was provided by the Washington Institute for the Study of Inequality and Race and University of Washington School of Nursing Hester McLaws Nursing Scholarship, for which I am grateful. To my mother and my brother, Betti and Mikey Shook, for always saying ‘I Love You’, particularly when it hasn’t been easy. Over the last three years, when I envisioned the moment I’d finally sit down to write the acknowledgements of this dissertation, I always thought the exact right words would come to me, that I’d have the words to properly thank each of you for the invaluable contributions you’ve made to my life. I thought it would feel like the closing of a chapter, one that I opened fifteen years ago when I ‘crossed over’…for lack of a better way of putting it. In many ways it has felt exactly like I expected and not like that at all. In alphabetical order: Amy Alikhani, Marcia Benjamin, Renee Byrd, Joseph Canarelli, Dresden Carvalho, Cathy Johnson, Megumi Iwasa, Augustus Klein, Tim Matheson, Shafer Mazow, Kevin Miles, Tracy Montauk, Elizabeth Nicholson, Deanna Pusatier, Gaelen Stevens-Nelson, and Kelly Storck – you are my queer family, the family I made from scratch. I was never alone in this process because each of you was with me…helping me to cross over …over, and over again. To my partner Kevin Custer, love of my life – Thank-You…for “traveling down the road of life with me”. As the Reverend Doctor Douglas Harrison says: “The dissertative spouse is a singular thing to live through.” We made it love! Forward always. Table of Contents Abstract .................................................................................................................................. ii Dedication .............................................................................................................................. iv Acknowledgments ................................................................................................................... v List of Tables .......................................................................................................................... 9 Chapter One ......................................................................................................................... 10 Introduction .................................................................................................................................. 10 Specific Aims ................................................................................................................................ 12 Aim 1 ................................................................................................................................................................. 12 Aim 2: ................................................................................................................................................................ 12 Aim 3: ................................................................................................................................................................ 12 References ..................................................................................................................................... 14 Chapter Two ......................................................................................................................... 17 Abstract ........................................................................................................................................ 18 Introduction .................................................................................................................................. 20 A Brief History of the Present ..........................................................................................................................