Reproductive Citizenship: Experiences of Mothers with Disabilities in Russia BY ALFIYA BATTALOVA B.A., Omsk State University, 2007 M.P.A, University of Maine, Orono, 2011 THESIS Submitted as partial fulfillment of the requirements For the degree of Doctor of Philosophy in Disability Studies In the Graduate College of the University of Illinois at Chicago, 2017 Chicago, Illinois Defense Committee: Sarah Parker Harris, Chair and Advisor Carol Gill Akemi Nishida Michael Rasell, Lincoln University, United Kingdom Kateřina Kolářová, Charles University, Czech Republic ACKNOWLEDGMENTS This dissertation is the result of several years of careful thinking about what should be the focus of my research. The components that I had in mind – disability in Russia – took a long time to coalesce into a clear idea of the research project. I am indebted to people around me who were patient and supportive as I was working through the different stages of this process. I would like to acknowledge my deep gratitude to my academic advisor and the committee chair, Dr. Sarah Parker Harris. Sarah’s guidance and her ability to map out a vision kept me going even after the break that I took from the pursuing my degree. It is this reassurance that things are possible and things are doable that was crucial for my decision to finish my PhD. In the times when everything seems vague and disorganized, Sarah brings in clarity and a calm balanced perspective that are so crucial during the dissertation writing process. I remember that when Dr. Michael Rasell agreed to serve on my committee, I was beyond excited. Throughout the last few years of working with Michael, he proved to be an indispensable source of my critical engagement with the scholarship on post-Soviet Russia. His insightful feedback and challenging questions pushed my own thinking and encouraged me to keep focused. I cannot express enough gratitude to Dr. Carol Gill who introduced me to the rich and exciting domain of qualitative research in disability studies. The kind of critical engagement with the processes of qualitative methodology and the deep appreciation of the knowledge production based on qualitative methods taught me to be a much more reflexive researcher who values ambivalence and in-betweenness. At the crucial time of my dissertation research, I was extremely fortunate that Dr. Akemi Nishida and Dr. Kateřina Kolářová had agreed to step in and serve on my committee. Akemi’s ii ACKNOWLEDGMENTS (continued) expertise on transnational feminism and social justice and Katerina’s critical work in cultural studies were instrumental in shaping my own thinking. I would like to thank Aly Patsavas, a friend and a colleague whose support and kindness sustained me during the year of writing my dissertation in Chicago. Aly’s active listening and expression of solidarity made a huge difference during some hard times. I also want to express gratitude to my fellow colleagues and friends in the Department of Disability and Human Development at UIC whose interdisciplinary work gives me a lot of hope in thinking about the future directions of disability studies as a field. As a non-native English speaker, I appreciate all the people who provided editorial assistance in my writing process. I would like to thank Dorian Lebreux for her editorial suggestions. My great group of friends in Vancouver, especially friends from the disability community there, offered me their encouragement and thought-provoking conversations. I could not have done it without my wonderful family. My mom has been by my side through ups and downs and has always been my source of strength. I cannot imagine doing this work without my sister and my niece who provided me with a much needed distraction from sometimes frustrating writing process. I cannot thank enough my husband Pratick who believed in me and supported me from miles away. Finally, I want to express my sincere appreciation to all the research participants who agreed to be interviewed and whose stories of motherhood informed this research in a truly transformative way. AB iii TABLE OF CONTENTS CHAPTER PAGE I. INTRODUCTION .................................................................................................. 1 A. Background ................................................................................................. 1 B. Goals and Research Questions .................................................................... 4 C. Methodology ............................................................................................... 7 D. Definitions................................................................................................... 9 E. Dissertation Outline .................................................................................. 11 II. GENDER AND MOTHERHOOD IN THE CONTEXT OF CITIZENSHIP ...... 14 A. Introduction ............................................................................................... 14 B. Gendered Citizenship ................................................................................ 15 C. Maternal Citizenship ................................................................................. 17 D. Motherhood and Disability ....................................................................... 19 E. Exclusion of Disability in Citizenship Debates ........................................ 20 F. Gender and Motherhood in the Soviet Context ........................................ 22 G. Gender Discourse in post-Soviet Russia ................................................... 23 H. Families and Disability in Russia ............................................................. 28 I. Invisibility of Disability Discourses around Motherhood ........................ 31 J. Conclusion ................................................................................................ 35 III. CONCEPTUAL FRAMEWORK ......................................................................... 38 A. Introduction ............................................................................................... 38 B. Citizenship Debates: Shifting in Depth and in Breadth ............................ 39 C. Intersectionality......................................................................................... 45 D. Care and Citizenship ................................................................................. 48 E. Subjectivities and Citizenship ................................................................... 53 F. Belonging .................................................................................................. 57 G. Reproductive Citizenship .......................................................................... 60 H. Conclusion ................................................................................................ 61 IV. METHODOLOGY ............................................................................................... 63 A. Introduction ............................................................................................... 63 B. Exploratory Qualitative Research ............................................................. 63 C. Intersectional Research ............................................................................. 64 D. Feminist Disability Studies Methodology ................................................ 65 E. Experience, Context, and Discourse ......................................................... 68 F. Post-Soviet Research Space ...................................................................... 70 G. Research Site ............................................................................................. 71 H. Recruitment Strategies: Negotiating Access ............................................. 72 I. Research in Virtual Spaces ....................................................................... 74 iv TABLE OF CONTENTS (continued) CHAPTER PAGE J. Research Participants ................................................................................ 75 K. Semi-structured Interviews ....................................................................... 77 L. Translation ................................................................................................ 78 M. Data Analysis ............................................................................................ 79 N. Insider-Outsider ........................................................................................ 83 O. Reflexivity................................................................................................. 85 P. Limitations ................................................................................................ 86 Q. Conclusion ................................................................................................ 88 V. AMBIVALENT SUBJECTIVITIES .................................................................... 89 A. Introduction ............................................................................................... 89 B. Constructing the Mother ........................................................................... 91 1. Independence discourses ................................................................ 95 2. Feminine subjectivity ......................................................................97 C. De-essentializing Motherhood ................................................................ 101 1. The role of barriers........................................................................104 2. Seeing yourself through children