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An Ethnographic Account of Disability and Globalization in Contemporary Russia

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An Ethnographic Account of Disability and Globalization in Contemporary Russia INACCESSIBLE ACCESSIBILITY: AN ETHNOGRAPHIC ACCOUNT OF DISABILITY AND GLOBALIZATION IN CONTEMPORARY RUSSIA Cassandra Hartblay A dissertation submitted to the faculty at the University of North Carolina at Chapel Hill in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of Anthropology. Chapel Hill 2015 ! ! ! ! Approved by: Michele Rivkin-Fish Arturo Escobar Sue Estroff Jocelyn Chua Robert McRuer © 2015 Cassandra Hartblay ALL RIGHTS RESERVED ! ii! ABSTRACT Cassandra Hartblay: Inaccessible Accessibility: An Ethnographic Account Of Disability And Globalization In Contemporary Russia (Under the Direction of Michele Rivkin-Fish) Based on over twelve months of fieldwork in Russia, this dissertation explores what an ethnographic approach offers disability studies as a global, interdisciplinary, justice-oriented field. Focused on the personal, embodied narratives and experiences of five adults with mobility impairments in the regional capital city of Petrozavodsk, the dissertation draws on methods including participant observation, ethnographic interviews, performance ethnography, and analysis of public documents and popular media to trace the ways in which the category of disability is reproduced, stigmatized, and made meaningful in a contemporary postsoviet urban context. In tracing the ways in which concepts of disability and accessibility move transnational and transculturally as part of global expert cultures, I argue that Russian adults with disabilities expertly negotiate multiple modes of understanding disability, including historically and culturally rooted social stigma; psychosocial, therapeutic, or medicalized approaches; and democratic minority group citizenship. Considering the array of colloquial Russian terms that my interlocutors used to discuss issues of access and inaccess in informal settings, and their cultural antecedents, I suggest that the postsoviet infrastructural milieu is frequently posited as always opposed to development and European modernity. I draw on personal history narratives to relate how people with disabilities experienced the shifting discourses of human rights, democracy, and strategies of integration during the postsoviet transition of the 1990s through Putin’s iii! ! reconsolidation in the 2010s. The final section of the dissertation relates how adults with mobility impairments who came of age during the postsoviet transition years enact Russian citizenship and assert social worth in the context of an art therapy group, through online social networks, and in kinship and gender relations. This work contributes to cultural and medical anthropology, to the ethnography of postsocialism and NGO culture, and to the establishment of a robust anthropology of disability. ! ! ! iv! ACKNOWLEDGEMENTS The research for this work was funded by a National Science Foundation Graduate Research Fellowship. I also received funding from the Program in Sexuality Studies at the University of North Carolina at Chapel Hill. My stay in Petrozavodsk was facilitated through visa sponsorship for Youth Exchange through the Center for Initiatives, and for Cultural and Scientific Ties through the Karelian Center for Gender Research. I am grateful to Larissa Dmitrievna Boichenko of the Karelian Center for Gender Research and the Law School of Petrozavodsk State University for her unwavering support in securing my visa status and championing citizen exchange at a moment when our countries began to lean once again toward antagonism. I am also grateful to other scholars in the city of Petrozavodsk, especially Alexey Volkov and Vitaly Nilov. My ties to Petrozavodsk (as well as my Russian language skills) are entirely due to the enduring influence of Jude Wobst, who established and continues to support the exchange program between Amherst Regional High School in Massachusetts and School Number 17 in Petrozavodsk. This project would not have been possible without the support of the Russian disability and gender studies community, including Svetlana Driakhlitsina Affolter, Marianna Muravyeva, Elena Iarskaia-Smirnova and the late Pavel Romanov. I especially am grateful to Valeriya Markina, whose own forthcoming ethnography on disability theater in Moscow I am eagerly anticipating, and who is one of the few people in the world with whom it is possible to have the conversation, “how should we translate ‘the politics of staring’ into Russian?” My research also included extensive participation in a social theater project not discussed in this work, for which I v!! am thankful to all of the members and supporters of the Dobry Den' Theater, especially Oleg Lipovetsky and Lidia Pobedinskaia. I am grateful to the many professionals in Russian NGOs and government agencies who took the time to talk with me and either provide interviews or direct me toward further resources. Those colleagues at international non-profits who have taken an interest in elements of this project and supported me over the years deserve recognition. I am especially indebted to my colleagues at CEC ArtsLink and the Open World program, who brought me deeper into Russia, and to Kate Lapham at OSI, who took a chance on a young scholar. Ethnography is not possible without the participation of a great number of people, both those who participate formally, and those who buoyed me through my time in Russia with friendship and comradery. Thank you to those who participated in this research project. And thank you to my many friends in Petrozavodsk and across Russia. Spasibo. Preliminary findings and components of this work were presented at several academic conferences and workshops, and I am grateful to co-panelists, discussants, and audience members in those settings for their helpful feedback. In this vein, I am especially glad to have found interlocutors in Anastasia Kayiatos, Stevie Peace Larson, Louise Hickman, Marina Bazelevych, Amanda Cachia, Sara Hendren, Aimi Hamraie, and the participants and organizers of the Cripping Development Conference in Prague in the fall of 2013, especially Katerina Kolarova, Robert McRuer, and Chris Chapman. You all changed me. This work and project came into being thanks to the unwavering faith and support of my committee members at UNC-Chapel Hill Michele Rivkin-Fish, Jocelyn Lim Chua, Arturo Escobar, Sue Estroff, and the late William S. Lachicotte. I am also grateful to the members of the Moral Economies of Medicine working group, including Peter Redfield and Barry Saunders, and ! vi! the Social Movements working group, especially Michal Osterweil, Jean Dennison, and Dottie Holland. The performance ethnography crowd, including Marie Garlock, Renee Alexander Craft, and Joseph Megel have made elements of this work possible that could not have existed otherwise. My intellectual trajectory and sheer capacity to keep writing and “make it work” would not have been possible without friends and comrades, including Diana Gomez-Correal, Amelia Fiske, Sara Juengst, Mike Dimpfl, Adam Leeds, Lindsey Wallace, the 2013-2014 and 2014-2015 UNITAS community, and many more. And Katie Herzog: as the song goes, “stories don’t mean anything if you have no one to tell them to.” Thanks for being the one I gather stories for. Finally, embarking on this project and completing this dissertation would not have happened were it not for the support of my family: thank you. ! vii! TABLE OF CONTENTS LIST!OF!TABLES,!FIGURES,!AND!ILLUSTRATIONS!................................................................................!xiii! ! LIST!OF!ABBREVIATIONS!...................................................................................................................................!xv! ! LIST!OF!GEOGRAPHIC!AND!GEOPOLITICAL!TERMS!.............................................................................!xvi! ! A!NOTE!ON!DISABILITY!AND!TERMINOLOGY!.........................................................................................!xix! ! A!NOTE!ON!LANGUAGE!AND!RUSSIAN!TRANSLATION!AND!!! TRANSLITERATION!.............................................................................................................................................!xxi! ! PART!I:!DISABILITY!AS!A!GLOBAL!CATEGORY!...........................................................................................!1! ! CHAPTER!I:!INTRODUCTION!..............................................................................................................................!1! ! Situating!this!work!...........................................................................................................................................!13! ! Major!themes:!Personhood!and!Citizenship,!Infrastructure!!! and!Performance!..............................................................................................................................................!16! ! Methodology!.......................................................................................................................................................!23! ! Arriving!at!a!topic!for!Engaged!Ethnography!.......................................................................................!26! ! Plan!of!the!present!work!...............................................................................................................................!40! ! CHAPTER!II:!TOWARD!AN!ANTHROPOLOGY!OF!DISABILITY!!! IN!AN!AGE!OF!GLOBAL!INTERCONNECTION!............................................................................................!45! ! CrossYcultural!approaches!to!disability!..................................................................................................!48!
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