Social citizenship, disability and welfare provision in contemporary Russia: views from below by Michael Rasell A thesis submitted to The University of Birmingham for the degree of DOCTOR OF PHILOSOPHY Centre for Russian and East European Studies The University of Birmingham July 2011 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. Abstract This thesis uses an area studies approach to examine the complex relationship between citizenship, disability and welfare provision. It does so through a bottom-up analysis of how the state welfare system affects the everyday lives of physically disabled adults in contemporary Russia. Drawing on thirteen months of qualitative fieldwork in the city of Kazan, I study how tensions between guaranteeing rights and providing care are balanced in social provision. My focus on physical disability offers a sharp insight into the socially constructed tropes of control and exclusion that can mediate experiences of citizenship and also seeks to rectify the lack of research on disabled people in non- Western contexts, especially the postsocialist region. My research is underpinned by a theoretical and methodological framework that sees ‘social citizenship’ as an explicitly relational, emotional and embodied phenomenon and therefore values lived experiences of welfare provision. Each of my four empirical chapters considers a particular dimension of citizenship: needs interpretation, livelihoods, mobility and personal agency. Together they highlight that welfare provision is not always empowering and can create powerful inequalities. At the same time, I show that citizenship is often reworked from below through actions and discourses that challenge official ideas about the capacities and needs of disabled people. Für meine Oma Acknowledgements My doctoral project has taken many twists and turns over its five-year evolution. Although only my name appears on the title page, this thesis was only possible with the assistance and encouragement of a host of colleagues, friends and organisations. First of all, my utmost gratitude goes to my research participants who warmly and openly shared details of their lives with me. My thesis would have been very different without their willingness to devote time and energy to my research. Although I settled on the topic of disability somewhat unexpectedly, I have no regrets and am extremely pleased to have studied a group in Russian society that is sadly hidden and ignored in official circles. My supervisors at the University of Birmingham, Julian Cooper and Deema Kaneff, deserve much credit for giving me the trust and flexibility to pursue my own empirical and theoretical interests. Their dedication to my progress and a topic that pushed the limits of their expertise is greatly appreciated. My PhD was generously funded by a studentship from the Economic and Social Research Council. I also received support from Universitas21 to visit the Social Policy Research Centre, University of New South Wales, and from the DAAD to spend two months at the Social Science Research Centre (WZB) in Berlin. I would like to thank my advisors Bettina Cass in Sydney and Chiara Saraceno in Berlin, where Justin Powell and Lisa Pfahl also provided significant support (and coffee!) alongside a crash course in US-German disability studies. Through their rigorous reading of my work, my examiners Rebecca Kay and Dominique Moran helped me to look at my thesis with new eyes. In Russia, my colleagues at Kazan State Medical University, especially Laysan Mukharyamova, looked out for me and opened numerous doors into the world of Russian social services. Overseas fieldwork can often be lonely and exhausting, but their moral and practical support was extremely nurturing. Irina Kuznetsova-Morenko, Olesya Timofeeva and Olga Goncharova each greatly facilitated my research by expanding my contacts with disabled residents in Kazan. Andrei Komarov in the city of Nabarezhnye Chelny taught me a lot about Russia and gave me a valuable insight into local disability provision. My family sparked my professional and personal interest in Russia and have followed the development of my work with a pleasing mixture of distance and support. My sister Jenny meticulously read and polished my draft text and must be credited for her friendly criticism. Friends and fellow doctoral students in Birmingham and beyond have shared the distinctive and personality warping experience of writing a PhD and I am indebted to them for their sympathy and infectious enthusiasm. Finally, Pavel Rodionov has valiantly endured my distractedness, erratic schedules and stressful periods for the sake of my research. He deserves a special mention for appreciating what this study means to me and its implications for practical and scholarly understanding of contemporary Russia. Table of contents List of terms and abbreviations List of illustrations and diagrams Introduction 1 Citizenship and welfare provision in the postsocialist region 3 Disability as a lens for understanding social citizenship 7 Outline of thesis 11 Chapter One – Conceptualising citizenship, disability and welfare provision: views from below 17 The lived experience of citizenship 18 Citizenship, difference and disability 20 Care perspectives on citizenship: relations, power, agency and emotions 23 Mobility and spatial dimensions of citizenship 33 Citizenship and welfare provision: a complicated relationship 41 How does the state disable? 45 Conclusions: a framework for analysing citizenship 53 Chapter Two – Disability and social citizenship in Russia: methodological considerations 57 A qualitative research strategy for studying social citizenship 57 Fieldwork 62 A social portrait of Kazan and Tatarstan 64 Disability provision in Kazan and Tatarstan 69 Research methodology 72 Positioning myself in the research: practical and ethical issues 81 Data analysis and revisit 90 Conclusions 91 Chapter Three – A history of welfare provision and disabled people’s citizenship in Russia 93 Soviet disability policies: paternalism and passivity 94 Institutionalisation and defectology 104 Russian social policy since perestroika: continuity and change 107 Reform and retrenchment: welfare reform under Vladimir Putin 116 Conclusions 124 Chapter Four – Classifying disability, rehabilitation and the medical gaze 128 Official discourses about disability 129 Classifying disability 134 Hierarchies of disability 142 Defining need as rehabilitation 145 Medical services 148 The non-provision of medicines 151 Sanatoria as social institutions 157 Conclusions 161 Chapter Five – Shaping livelihoods: education, employment and money 166 The educational dilemma: ‘choosing’ how to be excluded 168 Employment: state-sponsored exclusion 186 Material well-being 200 Conclusions 205 Chapter Six – Mobility and access to space: housing, the built environment and transport 208 Isolation at home 210 Housing complexes: new buildings, old approaches 219 Public spaces: buildings and streets 228 Transport and moving around spaces 238 Seasonal dimensions of mobility 244 Conclusions 246 Chapter Seven – Citizenship in action: promoting agency and rights 250 Obstacles to realising rights and entitlements 251 Challenging the actions and decisions of state institutions 258 Forms of organised agency 263 Family and friends 273 Attitudes towards citizenship 279 Conclusions 287 Conclusions – Social citizenship, disability and welfare provision in Russia 290 Social citizenship and disability provision in Russia: empirical results 290 Reconsidering citizenship: theoretical reflections 296 The transnational dimensions of area studies 300 Suggestions for future research 308 Epilogue: the path to equal opportunities? 311 Appendix 1 – List of research participants 313 Appendix 2 – List of social services centres visited 315 Appendix 3 – List of expert interviews 316 Bibliography 317 Terms and abbreviations Except for Russian words that have become part of standard English, my thesis uses the British Museum system of transliterating Russian words into the Latin alphabet. Interviews and documents have been translated by myself unless a reference is given to an official English-language version. I have endeavoured to follow the guidelines of the British Sociological Association on using non-discriminatory language in research about disability. Desnitsa Disability organisation in the Volga city of Samara that promotes rights- based approaches and independent living IPR Individual Programme of Rehabilitation MSEK Commission of medical-social expertise VOI All-Russian Society of Disabled People VTEK Commission of medical-labour expertise List of illustrations and diagrams Illustrations Map of Kazan, Tatarstan and subsidiary fieldwork sites 67 Tables Disability statistics in Tatarstan (accurate on 1 October 2006) 69 Boxes Interview framework 76 Introduction * * * Disability officially did not exist in the Soviet Union and indeed it was only after living in Russia for six months prior to my fieldwork that