Disability in Eastern Europe and the Former Soviet Union: History, Policy and Everyday Life 1315866935, 9781315866932

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Disability in Eastern Europe and the Former Soviet Union

There are over 30 million disabled people in Russia and Eastern Europe, yet their voices are rarely heard in scholarly studies of life and well-being in the region. This book brings together new research by internationally recognised local and non-native scholars in a range of countries in Eastern Europe and the former Soviet Union. It covers, historically, the origins of legacies that continue to affect well-being and policy in the region today. Discussions of disability in culture and society highlight the broader conditions in which disabled people must build their identities and well-being, whilst in-depth biographical profiles outline what living with disabilities in the region is like. Chapters on policy interventions, including international influences, examine recent reforms and the difficulties of implementing inclusive, community-based care. The book will be of interest both to regional specialists, for whom well-being, equality and human rights are crucial concerns, and to scholars of disability and social policy internationally. Michael Rasell is a Senior Lecturer in the School of Health and Social Care at the University of Lincoln, UK. Elena Iarskaia-Smirnova is a Professor in the Department of General Sociology at the National Research University – Higher School of Economics, Moscow, Russia.

BASEES/Routledge series on Russian and East European studies Series editor: Richard Sakwa Department of Politics and International Relations, University of Kent Editorial Committee: Roy Allison, St Antony’s College, Oxford Birgit Beumers, Department of Theatre, Film and Television Studies, University of Aberystwyth Richard Connolly, Centre for Russian and East European Studies, University of Birmingham Terry Cox, Department of Central and East European Studies, University of Glasgow Peter Duncan, School of Slavonic and East European Studies, University College London Zoe Knox, School of Historical Studies, University of Leicester Rosalind Marsh, Department of European Studies and Modern Languages, University of Bath David Moon, Department of History, University of York Hilary Pilkington, Department of Sociology, University of Manchester Graham Timmins, Department of Politics, University of Birmingham Stephen White, Department of Politics, University of Glasgow Founding Editorial Committee Member: George Blazyca, Centre for Contemporary European Studies, University of Paisley This series is published on behalf of BASEES (the British Association for Slavonic and East European Studies). The series comprises original, high-quality, researchlevel work by both new and established scholars on all aspects of Russian, Soviet, post-Soviet and East European Studies in humanities and social science subjects.

1. Ukraine’s Foreign and Security Policy, 1991–2000 Roman Wolczuk

4. Repression and Resistance in Communist Europe J.C. Sharman

2. Political Parties in the Russian Regions Derek S. Hutcheson

5. Political Elites and the New Russia Anton Steen

3. Local Communities and PostCommunist Transformation Edited by Simon Smith

6. Dostoevsky and the Idea of Russianness Sarah Hudspith

7. Performing Russia – Folk Revival and Russian Identity Laura J. Olson 8. Russian Transformations Edited by Leo McCann 9. Soviet Music and Society under Lenin and Stalin The baton and sickle Edited by Neil Edmunds 10. State Building in Ukraine The Ukranian parliament, 1990–2003 Sarah Whitmore 11. Defending Human Rights in Russia Sergei Kovalyov, dissident and Human Rights Commissioner, 1969–2003 Emma Gilligan 12. Small-Town Russia Postcommunist livelihoods and identities: a portrait of the Intelligentsia in Achit, Bednodemyanovsk and Zubtsov, 1999–2000 Anne White 13. Russian Society and the Orthodox Church Religion in Russia after Communism Zoe Knox 14. Russian Literary Culture in the Camera Age The word as image Stephen Hutchings 15. Between Stalin and Hitler Class war and race war on the Dvina, 1940–46 Geoffrey Swain 16. Literature in Post-Communist Russia and Eastern Europe The Russian, Czech and Slovak fiction of the changes, 1988–98 Rajendra A. Chitnis

17. The Legacy of Soviet Dissent Dissidents, democratisation and radical nationalism in Russia Robert Horvath 18. Russian and Soviet Film Adaptations of Literature, 1900–2001 Screening the word Edited by Stephen Hutchings and Anat Vernitski 19. Russia as a Great Power Dimensions of security under Putin Edited by Jakob Hedenskog, Vilhelm Konnander, Bertil Nygren, Ingmar Oldberg and Christer Pursiainen 20. Katyn and the Soviet Massacre of 1940 Truth, justice and memory George Sanford 21. Conscience, Dissent and Reform in Soviet Russia Philip Boobbyer 22. The Limits of Russian Democratisation Emergency powers and states of emergency Alexander N. Domrin 23. The Dilemmas of Destalinisation A social and cultural history of reform in the Khrushchev era Edited by Polly Jones 24. News Media and Power in Russia Olessia Koltsova 25. Post-Soviet Civil Society Democratization in Russia and the Baltic States Anders Uhlin 26. The Collapse of Communist Power in Poland Jacqueline Hayden

27. Television, Democracy and Elections in Russia Sarah Oates 28. Russian Constitutionalism Historical and contemporary development Andrey N. Medushevsky 29. Late Stalinist Russia Society between reconstruction and reinvention Edited by Juliane Fürst 30. The Transformation of Urban Space in Post-Soviet Russia Konstantin Axenov, Isolde Brade and Evgenij Bondarchuk 31. Western Intellectuals and the Soviet Union, 1920–40 From Red Square to the Left Bank Ludmila Stern

38. Peopling the Russian Periphery Borderland colonization in Eurasian history Edited by Nicholas B. Breyfogle, Abby Schrader and Willard Sunderland 39. Russian Legal Culture Before and After Communism Criminal justice, politics and the public sphere Frances Nethercott 40. Political and Social Thought in Post-Communist Russia Axel Kaehne 41. The Demise of the Soviet Communist Party Atsushi Ogushi

32. The Germans of the Soviet Union Irina Mukhina

42. Russian Policy towards China and Japan The El’tsin and Putin periods Natasha Kuhrt

33. Re-constructing the Post-Soviet Industrial Region The Donbas in transition Edited by Adam Swain

43. Soviet Karelia Politics, planning and terror in Stalin’s Russia, 1920–1939 Nick Baron

34. Chechnya – Russia’s “War on Terror” John Russell 35. The New Right in the New Europe Czech transformation and right-wing politics, 1989–2006 Seán Hanley 36. Democracy and Myth in Russia and Eastern Europe Edited by Alexander Wöll and Harald Wydra 37. Energy Dependency, Politics and Corruption in the Former Soviet Union Russia’s power, Oligarchs’ profits and Ukraine’s missing energy policy, 1995–2006 Margarita M. Balmaceda

44. Reinventing Poland Economic and political transformation and evolving national identity Edited by Martin Myant and Terry Cox 45. The Russian Revolution in Retreat, 1920–24 Soviet workers and the new communist elite Simon Pirani 46. Democratisation and Gender in Contemporary Russia Suvi Salmenniemi 47. Narrating Post/Communism Colonial discourse and Europe’s borderline civilization Nataša Kovacˇevicˇ

48. Globalization and the State in Central and Eastern Europe The politics of foreign direct investment Jan Drahokoupil 49. Local Politics and Democratisation in Russia Cameron Ross 50. The Emancipation of the Serfs in Russia Peace arbitrators and the development of civil society Roxanne Easley 51. Federalism and Local Politics in Russia Edited by Cameron Ross and Adrian Campbell 52. Transitional Justice in Eastern Europe and the former Soviet Union Reckoning with the communist past Edited by Lavinia Stan 53. The Post-Soviet Russian Media Conflicting signals Edited by Birgit Beumers, Stephen Hutchings and Natalia Rulyova 54. Minority Rights in Central and Eastern Europe Edited by Bernd Rechel 55. Television and Culture in Putin’s Russia: Remote Control Stephen Hutchings and Natalia Rulyova 56. The Making of Modern Lithuania Tomas Balkelis 57. Soviet State and Society Under Nikita Khrushchev Melanie Ilic and Jeremy Smith 58. Communism, Nationalism and Ethnicity in Poland, 1944–1950 Michael Fleming

59. Democratic Elections in Poland, 1991–2007 Frances Millard 60. Critical Theory in Russia and the West Alastair Renfrew and Galin Tihanov 61. Promoting Democracy and Human Rights in Russia European organization and Russia’s socialization Sinikukka Saari 62. The Myth of the Russian Intelligentsia Old intellectuals in the new Russia Inna Kochetkova 63. Russia’s Federal Relations Putin’s reforms and management of the regions Elena A. Chebankova 64. Constitutional Bargaining in Russia, 1990–93 Institutions and uncertainty Edward Morgan-Jones 65. Building Big Business in Russia The impact of informal corporate governance practices Yuko Adachi 66. Russia and Islam State, society and radicalism Roland Dannreuther and Luke March 67. Celebrity and Glamour in Contemporary Russia Shocking chic Edited by Helena Goscilo and Vlad Strukov 68. The Socialist Alternative to Bolshevik Russia The Socialist Revolutionary Party, 1917–1939 Elizabeth White

69. Learning to Labour in Post-Soviet Russia Vocational youth in transition Charles Walker 70. Television and Presidential Power in Putin’s Russia Tina Burrett 71. Political Theory and Community Building in Post-Soviet Russia Edited by Oleg Kharkhordin and Risto Alapuro 72. Disease, Health Care and Government in Late Imperial Russia Life and death on the Volga, 1823–1914 Charlotte E. Henze 73. Khrushchev in the Kremlin Policy and government in the Soviet Union, 1953–1964 Edited by Melanie Ilic and Jeremy Smith 74. Citizens in the Making in PostSoviet States Olena Nikolayenko 75. The Decline of Regionalism in Putin’s Russia Boundary issues J. Paul Goode 76. The Communist Youth League and the Transformation of the Soviet Union, 1917–1932 Matthias Neumann 77. Putin’s United Russia Party S. P. Roberts 78. The European Union and its Eastern Neighbours Towards a more ambitious partnership? Elena Korosteleva 79. Russia’s Identity in International Relations Images, perceptions, misperceptions Edited by Ray Taras

80. Putin as Celebrity and Cultural Icon Edited by Helena Goscilo 81. Russia – Democracy Versus Modernization A dilemma for Russia and for the world Edited by Vladislav Inozemtsev and Piotr Dutkiewicz 82. Putin’s Preventative CounterRevolution Post-Soviet authoritarianism and the spectre of Velvet Revolution Robert Horvath 83. The Baltic States from the Soviet Union to the European Union Identity, discourse and power in the post-communist transition of Estonia, Latvia and Lithuania Richard Mole 84. The EU–Russia Borderland New contexts for regional cooperation Edited by Heikki Eskelinen, Ilkka Liikanen and James W. Scott 85. The Economic Sources of Social Order Development in PostSocialist Eastern Europe Richard Connolly 86. East European Diasporas, Migration and Cosmopolitanism Edited by Ulrike Ziemer and Sean P. Roberts 87. Civil Society in Putin’s Russia Elena Chebankova 88. Post-Communist Poland – Contested Pasts and Future Identities Ewa Ochman 89. Soviet Economic Management under Khrushchev The Sovnarkhoz reform Nataliya Kibita 90. Soviet Consumer Culture in the Brezhnev Era Natalya Chernyshova

91. The Transition to Democracy in Hungary Árpád Göncz and the post-communist Hungarian presidency Dae Soon Kim

94. Disability in Eastern Europe and the Former Soviet Union History, policy and everyday life Edited by Michael Rasell and Elena Iarskaia-Smirnova

92. The Politics of HIV/AIDS in Russia Ulla Pape

95. The Making and Breaking of Soviet Lithuania Memory and modernity in the wake of war Violeta Davoliūté

93. The Capitalist Transformation of State Socialism The making and breaking of State Socialist society, and what followed David Lane

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Disability in Eastern Europe and the Former Soviet Union History, policy and everyday life

Edited by Michael Rasell and Elena Iarskaia-Smirnova

R

Routledge Taylor & Francis Group

LONDON AND NEW YORK

First published 2014 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2014 selection and editorial material, Michael Rasell and Elena Iarskaia-Smirnova; individual chapters, the contributors. The right of Michael Rasell and Elena Iarskaia-Smirnova to be identified as authors of the editorial material, and of the individual authors as authors of their contributions, has been asserted by them in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data Disability in Eastern Europe and the former Soviet Union: history, policy and everyday life / edited by Michael Rasell and Elena Iarskaia-Smirnova. page; cm. – (BASEES/Routledge series on Russian and East European Studies; 94) Includes bibliographical references and index. ISBN: 978-0-415-61096-4 (hardback) – ISBN: 978-1-315-86693-2 (ebook) 1. People with disabilities–Former Soviet republics. 2. People with disabilities–Europe, Eastern. I. Rasell, Michael, editor of compilation. II. IArskaia-Smirnova, Elena, editor of compilation. III. Series: BASEES/Routledge series on Russian and East European Studies; 94. HV 1559. F6D572013 362.40947–dc23 2013020591 ISBN: 978-0-415-61096-4 (hbk) ISBN: 978-1-315-86693-2 (ebk) Typeset in Times New Roman by Deer Park Productions Every effort has been made to contact copyright holders for their permission to reprint material in this book. The publishers would be grateful to hear from any copyright holder who is not here acknowledged and will undertake to rectify any errors or omissions in future editions of this book.

Contents

List of figures and tables Notes on contributors Acknowledgements 1

Conceptualising disability in Eastern Europe and the former Soviet Union

xiii xv xviii

1

M I C H A E L R A SE L L AND E L E NA I ARS KAI A- S MI RN O V A

2

Soviet-style welfare: the disabled soldiers of the ‘Great Patriotic War’

18

B E A T E F I E S E LE R

3

Prosthetic promise and Potemkin limbs in late-Stalinist Russia

42

F R A N C E S B E RNS T E I N

4

Heroes and spongers: the iconography of disability in Soviet posters and film

67

E L E N A I A R S KAI A- S MI RNOVA AND P AVE L ROMA N O V

5

Between disabling disorders and mundane nervousness: representations of psychiatric patients and their distress in Soviet and post-Soviet Latvia

97

A G I T A L U¯ S E AND DAI GA KAME RA¯ DE

6

Living with a disability in Hungary: reconstructing the narratives of disabled students

121

ESZTER GÁBOR

7

Breaking the silence: disability and sexuality in contemporary Bulgaria T E O D O R M L A DE NOV

141

xii

Contents

8

Citizens or ‘dead souls’?: an anthropological perspective on disability and citizenship in post-Soviet Ukraine

165

S A R A H P H I L LI P S

9

Those who do not work shall not eat!: a comparative perspective on the ideology of work within Eastern European disability discourses

184

D A R J A Z A V I RŠ E K

10 The challenges of operationalizing a human rights approach to disability in Central Asia

204

H I S A Y O K A T S UI

11 The complex role of non-governmental organizations in advancing the inclusion of children with disabilities in Bosnia-Herzegovina and Bulgaria

226

M A J D A B E ĆI RE VI Ć AND MONI CA DOWL I NG

12 Lost in transition: missed opportunities for reforming disabled children’s education in Armenia, Azerbaijan and Georgia

245

V I C T O R I A S H MI DT

Index

270

Figures and tables

Figures 3.1 3.2 3.3 3.4 3.5 3.6 4.1

4.2 4.3

4.4

4.5 4.6

4.7 4.8

4.9

Viktor Kononov at his workbench using his prosthetic device. The Kononov arm’s intended male recipient. Rid the collective farm of the kulak, poster from 1920. Let’s fulfil the plan of great works, poster from 1930 by G. G. Klutis. Let’s root out spies and saboteurs, poster from 1937 by S. D. Igumnov. Design for the Kononov prosthesis. Poster from 1920 by Alexander Apsit, Each honest citizen should help injured and ill Red Army soldiers, which shows disabled veterans as objects of mercy and charity. Poster by Alexei Radakov: An illiterate person is like a blind person: he faces misfortunes and disasters everywhere, 1920. Screenshot from One Million Two Hundred Thousand, 1931. In this scene the director and cameraman are preoccupied with movement itself. Screenshot from One Million Two Hundred Thousand, 1931. The disabled body is shown as an object of medical scrutiny and expertise. Poster by unknown artist, I violated traffic regulations, 1939. A disabled person is shown as the cause of his own problems. Screenshot from the film Return to life, 1966. Achievements of engineering – for example, a bionic artificial hand – were key visual elements along with numerous devices and medical workers in Soviet documentary films about disabled people. Screenshot from Operation ‘Y’. The reason is drinking (1983), poster of the anti-alcohol campaign of the 1980s that presents disability as the fault of individuals. Poster by Olga Cutcher, Invalids cannot wait any longer, 1988, in which a disabled person is pictured waiting for a wheelchair to replace crutches.

43 44 45 46 47 49

70 71

73

74 75

84 85

86

88

xiv

Figures and tables

4.10 Screenshot from Every Tenth – the poet Gennadii Golovatii speaks about the cynicism of officials in the cultural and welfare spheres. 4.11 Screenshot from The Story of Asya Klyatchina, Who Loved but did not Marry, which featured ordinary people together with professional actors, including a hunchbacked figure of the kolkhoz chairman. 4.12 Screenshot from the 1989 film What Happened by the Sea by Ayan Shakhmalieva.

89

90 91

Tables 2.1 2.2

Distribution of disabled servicemen in groups, RSFSR 1942–48. Pensions for disabled servicemen completely (Group 1) or partially (Groups 2 and 3) unable to work as a result of military duty, 1 January 1938. 2.3 Pensions for former peasants or students injured during military action, 1 January 1938. 9.1 Slovenian figures on employment and people with disabilities. 9.2 People working in sheltered workplaces in Slovenia. 12.1 General characteristics of Caucasus countries. 12.2 Educational institutions for disabled children in the Caucasus (using most recent figures from 2009–11).

24

25 26 192 193 252 256

Notes on contributors

Majda Bećirević completed her PhD at the Open University in 2010 and is now Head of Research and Policy in the Atlantic Initiative in Bosnia and Herzegovina. Her research looks at the social and educational inclusion of disabled children in South-Eastern Europe and she has published widely on educational reform in Bosnia, Bulgaria and the wider Balkans region. Email: [email protected] Frances Bernstein is Associate Professor of History at Drew University in Madison, New Jersey. Her work focuses on health, medicine, sexuality and the body in Soviet Russia. She is author of The Dictatorship of Sex: Lifestyle Advice for the Soviet Masses (Northern Illinois University Press, 2007) and a forthcoming monograph on disability, memory and masculinity in the Soviet Union at the end of the Second World War. Email: [email protected] Monica Dowling is Professor of Social Work at the Open University. Her research looks at areas of poverty and social work, children with disabilities and their families and user involvement in the evaluation of social services. She has researched extensively in Eastern Europe in collaboration with NGOs such as UNICEF and the Open Society in order to improve the situation of children with disabilities. Email: [email protected] Beate Fieseler is Professor of History at Heinrich Heine University, Dusseldorf, Germany. She specialises in Russian and East European history and has conducted extensive archival research on both women and war veterans in the Soviet Union. She is currently undertaking a research project on ‘Women, Stalinism and the Soviet Home Front, 1941–45.’ Email: fi[email protected] Eszter Gábor is a final-year PhD student at the University of Göttingen, based in the Faculty of Social Sciences. She has an academic background in both social policy and sociology and specialises in interpretive social research, notably the analysis of life stories and biographical narratives. Her doctoral project looks at individual and social aspects of disability discrimination in Hungary. Email: [email protected]

xvi

Notes on contributors

Elena Iarskaia-Smirnova is Professor of Sociology at the National Research University – Higher School of Economics, Moscow, Russia as well as at Saratov State Technical University. She is interested in gender, disability, social work, social policy and professions, visual studies, public sociology and qualitative research methodology. She is co-editor of the Journal of Social Policy Studies. Email: [email protected] Daiga Kamera¯de is a Lecturer in Organisational Behaviour and Human Resource Management at Salford Business School, University of Salford. She is a labour market and employment researcher looking at the United Kingdom, Latvia and recent EU accession countries. Her current work focuses on the changing nature of voluntary work in third-sector organisations and the effects of volunteering on employability. Email: [email protected] Hisayo Katsui is a Senior Researcher at the Institute for Human Rights of Åbo Akademi University in Finland. She is also Research and Development Manager at the Abilis Foundation, which supports the activities of persons with disabilities in developing countries. Her academic interests are on disability, development, human rights and civil society and her academic interests are on disability, development, human rights and civil society and she has undertaken research on these issues in Central Asia, Uganda and Zambia. Email: hisayo.katsui@abilis.fi Agita Lu¯se is the Director of the MSc Programme in Social Anthropology at Riga Stradin¸š University. An anthropologist by training, her research looks at caring practices in post-Soviet Latvia, especially around mental health. Email: agita. [email protected] Teodor Mladenov holds a Leverhulme Early Career Fellowship at the Centre of Public Policy Research, King’s College London. He has a disability activist background and has published widely on disability, framing his work with postmodern and phenomenological theories. His current research focuses on the marketisation of disability policy in the UK and Bulgaria and its impact on disabled people’s moral identities. Email: [email protected] Sarah Phillips is Associate Professor of Anthropology at Indiana University, – Bloomington. Her research focuses on contemporary Ukraine and she has published widely on the Chernobyl disaster, women’s social activism and the disability rights movement. Her 2011 monograph Disability and Mobile Citizenship in Postsocialist Ukraine (Bloomington: Indiana University Press) has received several awards. Email: [email protected] Pavel Romanov is Professor of Sociology at the National Research University – Higher School of Economics, Moscow, Russia. His research interests lie within the areas of social policy and professions, disabilities, gender, organisations, visual studies and qualitative research methodology. He is a director of the independent research organisation Center for Social Policy and Gender Studies and Editor-in-Chief of the Journal of Social Policy Studies. Email: pavel. [email protected]

Notes on contributors

xvii

Michael Rasell is Senior Lecturer in Health and Social Care at the University of Lincoln and programme leader of the Erasmus Mundus MA Advanced Development in Social Work. He is a qualitative sociologist whose research focuses on how state welfare programmes affect everyday life and well-being in Eastern Europe, especially in relation to disabled people and social services. Email: [email protected] Victoria Shmidt is a Lecturer in the Department of Social Policy and Social Work at Masaryk University, Brno, Czech Republic. Her research looks at child protection, disability rights and educational reform in Russia and Central Europe with a particular focus on understanding state socialist legacies in order to improve public discussion around contemporary social work issues. Email: schmidtvica@ yahoo.com Darja Zaviršek is Professor of Social Work at the University of Ljubljana, Slovenia and President of the Eastern European Sub-Regional Association of the International Association of Schools of Social Work. Her teaching and research focus on disability rights, gender equality, sexual abuse and the development of social work in Eastern Europe and developing countries. Email: darja.zavirsek@ fsd.uni-lj.si

Acknowledgements

The stimulus for producing an edited volume of disability-related research on Eastern Europe and the former Soviet Union arose at the 2008 BEARR Trust conference in London, which was dedicated to the topic of ‘Changing Attitudes to Disability in Russia, Ukraine and Central Asia’. Speaking to activists, NGO staff and researchers working in the region, it became clear that a range of research has been undertaken in the past few years, but not been united in a coherent collection that can illuminate the experience of disability in this fast-changing region. We are therefore thankful to the BEARR Trust for providing the inspiration for this book. It is our fervent hope that this collection bridges the gap that frequently exists between research and practice and is therefore useful to both scholars and staff from local and overseas organisations working in the region. We thank the authors in this collection for their enthusiasm and dedication to this project. The editorial team for Russian and East European Studies at Routledge, particularly Peter Sowden, Helena Hurd and Jillian Morrison, must be commended for their patience and support during the realisation of the collection. Although all chapters represent new arguments and analysis, several chapters in this book include sections of previously published text whilst others use images and pictures from archives and collections. Relevant details can be found in chapter endnotes and we thank journals, archives and publishers for granting permission to use the materials. Michael Rasell and Elena Iarskaia-Smirnova

1

Conceptualising disability in Eastern Europe and the former Soviet Union Michael Rasell and Elena Iarskaia-Smirnova

The topic of disability in Eastern Europe and the former Soviet Union commonly evokes a range of depressing images from abandoned children in dilapidated orphanages to military veterans in uniform begging on street corners. More positive associations are far less frequent, whether disability activism, inclusive kindergartens or disability-themed film festivals. The ‘micro worlds’ of disabled people – their home lives, daily routines, family and friends – are similarly unknown to both scholars and large parts of society in the region. This collection of recent research explores how disabled people in postsocialist countries live in a context of weak safety nets, unstable polities and ambivalent civil society development that make it difficult to overcome historical legacies of control, segregation and stigma. Studying disabled people’s lives provides insights into the contested conceptions of citizenship, health, diversity and well-being circulating in policy circles and society in an area of the world that has undergone significant transformation in the past 20 years. This introduction and the overall book are addressed to scholars of the postsocialist region, researchers within the field of disability studies as well as practitioners and activists wishing to learn about disability outside Western Europe and North America. For all readers, this volume echoes calls for greater consideration of the local specificities shaping disabled people’s lives, particularly in non-Western contexts (e.g. Ingstad and Whyte 2007; Meekosha 2011). Bringing together researchers from a range of humanities and social sciences, the collection provides a dedicated chronicle of the political, social and cultural dynamics affecting physically and mentally disabled people in Eastern Europe and the former Soviet Union. The research emphasizes the heterogeneity of societies in the region – including within disabled populations – by investigating the experiences of ‘actually lived socialism’ and ‘actually lived transition’ from the standpoint of bodies and minds that do not fit with dominant norms and ideals in society. In this opening chapter, we seek to contextualize the study of disability in Eastern Europe, Russia and the countries of the former Soviet Union. We outline the importance of disability perspectives to research on the region and also discuss how engagement with postsocialist specifics can enrich disability studies in empirical and theoretical terms. We make two inter-related arguments while tracing the evolving field of Eastern European disability studies. Firstly, disability

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Michael Rasell and Elena Iarskaia-Smirnova

discrimination in the region cannot be reduced solely to the state socialist past or to events since 1991. Instead, developments should be seen in the wider context of modernity’s hostility to disability as well as the distinctive combination of economic hardship, social upheaval and limited international influences that characterizes postsocialism. Although certain scholars – including some authors contributing to this book – view the state socialist past as the major source of problems facing disabled people, a more nuanced view in some other chapters highlights the negative dynamics of the neoliberal transition and political authoritarianism in terms of impeding equal rights. Recent developments in disabled people’s lives and broader socio-political struggles are thus not necessarily a simple story of overcoming socialist legacies. This relates to our second point that there was no single experience or model of disability during state socialism or the transformations since the late 1980s. Whilst there were certainly similarities between Soviet bloc countries, especially in terms of state welfare structures, individual and local factors also affected the lived experience of disability. Indeed, much of the research in the book shows how different forms of agency have always subverted official practices and continue to shape disabled people’s lives and strategies today.

Disability as a lens for understanding Eastern Europe The topic of disability has been only patchily covered in scholarly work on Eastern Europe and the former Soviet Union even though United Nations’ estimates suggest that 7 to 10 per cent of any country’s population will be disabled. Local and overseas scholars frequently apply the analytical lenses of gender, nationality and ethnicity in their research on the region, but disability has rarely been considered despite the insights it can shed on social and political dynamics. Indeed, disability as both a substantive topic and a framework for scholarly analysis represents difference, dissent and a challenge to mainstream norms by focusing on experiences and perspectives that have historically been marginalized in society and academia. The usefulness of a disability perspective for advancing understanding of Eastern Europe, indeed any region, becomes clear when the term ‘disability’ is understood as a complex social and cultural construction. The authors in this book all subscribe to an understanding of disability as the interaction between individual physiology or psychology and broader conditions in society. Rather than reducing disability to an inherent feature of bodies and minds, the analyses reveal how broader attitudes, conditions and practices in society stigmatize people whose bodily forms or cognitive patterns do not match an illusory norm or standard. Factors such as the built environment, legislative provision and attitudes of pity and shame delineate people as ‘disabled’ with frequently negative connotations. Studying societal reactions to disability can therefore shed light on the development of local politics, culture and treatment of otherness. It is very important to highlight that placing emphasis on the externally constructed nature of disability is not to deny that pain, discomfort and emotional unease can inform the experience of living with disability (cf. Thomas 2007).

Disability in Eastern Europe 3 The phenomenon of ‘disability’ encapsulates physiological and psychological experiences of impairment as well as society’s reactions to them. At the same time, focusing on societal discrimination does not mean that people with disabilities or their peers, relatives and supporters lack agency to challenge negative conditions and practices. The effort and resourcefulness of many disabled Eastern Europeans to challenge barriers comes out in a range of chapters. Yet, it would be unrealistic and patronising to offer ‘heroic’ depictions of disabled people (cf. Smart 2001); instead, we can suggest that individual agency is exerted whilst being embroiled within political and social structures that may undermine well-being. In advancing a conceptualisation of disability that is both embodied and relational, this book challenges the ‘medical’ model of disability that often dominates societal and professional discourses in Eastern Europe and the former Soviet Union. Disability scholars have carefully traced how conventional medicine has historically operated with an image of a presumed ‘normal’ body and therefore conflated impairment – a disruption in physiology or functioning – with disability (Stiker 1999; Morris 2000). The upshot is a policy approach to disability based around ‘rehabilitation’, ‘treatment’ and attempts to achieve a supposedly ‘normal’ body. As discussed in several chapters in this book, the intensely normative and often unsympathetic undertones of this ‘deficit approach’ can be seen in the name of the Soviet rehabilitation paradigm – defectology – that was implemented to differing degrees across socialist Europe. Given its roots in societal and cultural practices, disability is a highly useful frame for interrogating how societies relate to and ‘manage’ alterity and otherness. Whether unease arises over the aesthetics of disability (Hughes 1999; Schweik 2009) or the fact of human frailty and vulnerability (Shildrick 2005), disability has frequently been something that societies have sought to condemn, neglect and expunge. This makes it unfortunate that the topic has been largely neglected in research on Eastern Europe by local and foreign scholars. Sarah Phillips (2009) has called for a ‘disability history’ of state socialism and her agenda can be extended to more contemporary analyses. Consideration of disability can contribute to scholarly understanding of such varied topics as nongovernmental activities, international influences on policy reform, secret police machinations or styles of visual culture. As an interdisciplinary and cross-cutting theme, the applicability of disability perspectives extends across a wide range of disciplines, including history, sociology, cultural studies, political science and more applied professional subjects. Whilst advocating for a disability perspective within research on Eastern Europe, this book does not offer a monolithic understanding of disability as something that dominates life experiences, identity or self-identity. Many of the articles instead implicitly or explicitly advocate an ‘intersectional’ approach that looks at the overlap of multiple markers of difference and identity. Although there is a distinct tendency for policy and society in the region to reduce disabled people to their impairment and thereby degender and desexualize them (IarskaiaSmirnova 2011), disability is shaped by various social differences and stages of

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the life course (cf. Priestley 2001). It is therefore important to challenge assumptions that disabled people have broadly similar lives and face common issues. This misleading construction of ‘disabled people’ as a homogenous group reflects the trend of modernist politics to divide society into ‘normal’ and ‘abnormal’ sections, thus erasing all other social differences. Beyond the point that impairments vary, it should be recognized that gender, sexuality, class, wealth, location, education, religious faith and further contextual factors all shape the lived experience of disability. Official discourses and political priorities are important here because they strongly influence the position and stratification of disabled citizens. For example, state socialist governments were materially and rhetorically more supportive of disabled people in employment or who had become disabled during military service. Welfare systems differentiated such groups of ‘deserving’ disabled people from those regarded as ‘dependent’, less worthy or politically suspicious, for example people with chronic health issues or ones associated with such discredited organisations as tsarism or organized religion. The lens of disability can thus highlight the complexity of populations and the effects of political, cultural and economic developments, including the involvement of welfare states in creating inequalities and determining the entitlements of ‘good’ and ‘bad’ citizens. In presenting a collection of disability research on a particular region, we have inevitably faced the challenge of delineating its meaningful and relevant borders. Whereas many area scholars spoke of ‘post-Soviet’ and ‘postsocialist’ during the 1990s, questions over the usefulness of such broad monikers are growing (e.g. Buckler 2009). For one, the countries of Eastern Europe and the former Soviet Union were never completely similar during socialist rule, not least in terms of welfare provision (Lal 1991). The transformations since 1991 have also been diverse: Central-Eastern European countries have largely stabilized their economies and democracies whilst reorienting to the European Union, but the Balkan countries experienced protracted conflict and political strife and much of the CIS has become politically authoritarian with high levels of deprivation. Wide differences exist between the republics of the former Soviet Union as well as among Eastern European countries, meaning that there are multiple disability histories in the region. A final issue is that certain trends in the region reflect global dynamics beyond (post) socialism, for example neoliberal retrenchment and discourses about human rights. Social stigma, medicalized treatment regimes and the inaccessibility of the built environment are issues facing disabled people across the world, meaning that researchers should not treat Eastern Europe and the former Soviet Union as completely unique. In the case of disability research, commonalities from the state socialist period and similar trajectories of recent disability politics agitate for a broad regional sweep that includes the ex-USSR, the former Soviet bloc countries as well as Yugoslavia. Within the constraints of available research, the book thus encompasses Central and Eastern European members of the European Union, the Balkans, Russia and the western CIS, the Caucasus and Central Asia. Yet, the compilation of research on the ‘postsocialist’ region does not necessarily mean

Disability in Eastern Europe 5 there are identical legacies from the state socialist period. Instead, we emphasize that the countries surveyed in this book do not have a single model of disability either historically or nowadays. Recent influences – for example neoliberal welfare policies and ideas of social inclusion – have thus become entwined with socialist-era programmes, institutions and attitudes in ways that are particular to each individual country. The proverbial slate was not wiped clean by the political, social and economic rearrangements associated with the end of state socialism. Instead, elements of former practices and systems around disabled people are being reconfigured with newer influences within countries and from abroad. It is thus more appropriate to speak of ‘recombinations’ of the remains of the old order rather than path dependency or direct legacies of state socialism (cf. Stark and Bruszt 1998). Occasionally there are even abrupt breaks with tradition, for example the abolition of special schools in Armenia or deinstitutionalisation processes in many countries. Unravelling the reasons for the continuities and disjunctures in the lived experience of disability can illuminate wider political and social dynamics in this fast-changing region. This collection therefore seeks to expose diverse aspects of disability in Eastern Europe and the former Soviet Union rather than offer a meta-analysis or systematic comparison of ‘postsocialist disability’ that would over-generalize and over-simplify a complex set of dynamics.

Disability, modernity and postsocialism The chapters in this book interrogate the various ideas about health, aesthetics and the body that circulate in Eastern European political and social discourses. Physiological prowess was a powerful theme promoted by state socialist regimes. Whether heroic labourers, medal-winning sportspeople or victorious soldiers, there was an official championing and near fetishisation of bodily strength, functioning and ability. Such messages were striking both in their own right and for whom they marginalized in official realms of politics, culture and society. Yet, it is very important to recognize that the origins of disability discrimination are not to be found exclusively in the state socialist past. They are rooted more broadly in the precepts of modernism that accompanied industrialisation across Europe, North America and later in other parts of the world (Hughes 1999; Morris 2000). In many ways, state socialism represented a triumph of modernism in terms of standardisation, urbanisation, mass production and rationalist social planning. The rise of cities, science and industries led to the commoditisation of the human body in both capitalist and socialist countries, during which people were increasingly classified and valued according to their labour contribution (Hughes 2002). Modernity’s demand for standardized units of (manual) labour meant that disability and other possible impediments to work were increasingly equated with deviation that needed to be regulated through reproduction, fertility, public health and other demographic policies. By propagating strict and homogeneous notions of the body and mind, there could be little tolerance or acceptance of impairment.

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As highlighted by Michel Foucault (2003), state medical and welfare institutions from the late eighteenth century onwards formed part of a broader system of ‘biopower’ that sought to control and manipulate physiology and public health. Welfare institutions and discourses were sites for the exercise of authority and knowledge over bodies that ‘produce and maintain the ways we think about human normality and abnormality, and that mold the lives and the very selves of those caught up in them: disabled people, their nondisabled friends and loved ones, support workers, advocates, and so on’ (McWhorter 2005: xiii). For example, rehabilitation policies aimed to ‘restore’ lost ability whilst ideas about disability being an individual and largely medical problem dominated official discourses to the extent that people unable to demonstrate productivity were often consigned to large and isolated residential homes. Although memoirs and fictional works reveal that some disabled people in state socialist countries were included in local life (e.g. Kochergin 2007), official policies sought to separate them from mainstream society. Institutionalisation dominated with health, education and welfare professionals trained to recommend residential care as the most appropriate form of support for disabled adults and children. In a frequently cited quote used by several authors in this book, a Soviet official even claimed to foreign journalists in 1980 that ‘there are no disabled people in the USSR’, seeing the suggestion as a slight on Soviet society. Yet, some context is important: Western Europe also had high rates of residential care for disabled adults and children until the 1970s. However, a crucial difference between modernity’s treatment of disability in Western and Eastern Europe was that countervailing forces to official interpretations of disability were not permitted under state socialism. The tight regulation of politics, culture and society – especially in the USSR, Romania, Bulgaria and the Czech Republic – silenced alternative viewpoints and largely curtailed any disability politics or activism (White 1999). Independent organisations of disabled people were not permitted, even for welfare purposes, and press censorship prevented open discussions of conditions in residential institutions and failures in state disability provision. Rare exceptions did exist, such as underground samizdat literature in the Soviet Union or the Hartroda commune of disabled people in East Germany (Poore 2007: 264), but largely served to highlight the tightly regulated lives and well-being of most disabled people. In a cruel irony of fate, disabled people in Eastern Europe gained greater recognition and freedom over their lives at a time when political and economic instability undermined the potential of state welfare systems to reduce disabling barriers. Starting in the late 1980s, inflation, poverty, macroeconomic collapse and sometimes conflict diverted political attention from existing and new forms of vulnerability (e.g. Field and Twigg 2000). There were very few resources to support social inclusion as an alternative to the institutionalisation that was common in the socialist period. Furthermore, laws, policies and attitudes have only changed incrementally, particularly in the former USSR, where international organisations have had less influence on agendas around equality and human rights. Individualistic medical approaches to disability are still widespread in the region

Disability in Eastern Europe 7 and the pressure of stigma weighs on disabled people, their relatives and friends. The transition towards market and democracy thus did not automatically bring improvements for disabled citizens in postsocialist countries. Instead, research in this book reveals the very diverse experiences and biographies of disabled people during socialism and since 1989.

Locating Eastern Europe in disability studies Beyond enriching the study of Eastern Europe, experiences of disability from the region are useful to the evolving discipline of disability studies. This interdisciplinary field of scholarship grew out of disability movements in Western countries and is establishing itself around the world, including in the global South and nonEnglish-speaking environments, through dedicated journals, study programmes, conferences and research centres. Focused on the development of frameworks for theorising and understanding disability, this field of study uses the experiences of disabled people to ‘provide the focus for a consideration of citizenship, rights, personhood, difference and diversity’ (Goodley 2011: 20, original italics). There is growing interest within the field of disability studies in experiences of disability in non-Western contexts (e.g. Ingstad and Whyte 2007). At a conceptual level, this comes from the challenges put forward by disability scholars working in postcolonial traditions. They criticize the approaches often found in Western writings and disability advocacy for only applying to rich and democratic countries with well-resourced welfare states, thus failing to highlight the challenges facing disabled people and the development of disability policy in the ‘majority world’ (Ghai 2002; Connell 2011). Helen Meekosha’s critique of ‘scholarly colonialism’ in which ‘disability studies was constructed as a field of knowledge without reference to the theorists, or the social experience, of the global South’ (Meekosha 2011: 668) greatly resonates with the neglect of disability issues in postsocialist and post-Soviet countries. Just as area scholars criticize the application of paradigms and methodologies developed in other contexts to Eastern Europe (cf. Bunce 1995), critical voices within disability studies suggest that there should be a careful dialogue between local and Western understandings of disability. Certainly, the concepts used in disability studies cannot be universal because experiences of disability are highly contextual and contingent. For example, many strands of British disability studies have a neo-Marxist flavour and criticize capitalist relations for subjugating disabled people and excluding them from society (cf. Oliver 1990). However, disabled people’s experiences of ‘actually existing socialism’ in Eastern Europe and the former Soviet Union suggest that non-capitalist forms of economic organisation can also be harsh and repressive towards bodily and mental difference (McCagg and Siegelbaum 1989; Phillips 2009). Notions of human rights and disabled people’s movements work well in countries where political opposition and civil rights are well-established, but are far less successful when the authorities do not welcome dissent and actively silence it (Evans et al. 2005). Finally, self-empowerment and living an independent life can sound very hollow when

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families face chronic poverty and states lack the resources to provide even basic education and healthcare, let alone personal assistants, occupational therapy and an accessible built environment. The upshot is that knowledge of distinctive local settings is crucial to interpreting developments and opportunities for change around disability in Eastern Europe and the former USSR. Methodologically, this entails familiarity with the historical, political, linguistic and cultural tropes surrounding disability or indeed any topic about a particular country or area (cf. Cooper 2000 on the merits of ‘area studies’ approaches). In highlighting that local context matters to the experience of disability and options for improving the lives of disabled people, the studies in this book engage with the question of how international discourses around disability circulate in Eastern Europe and the former Soviet Union. Here we see great variation in line with the receptiveness of political and professional elites to outside influence and the differing roles played by international organisations. Victoria Shmidt’s chapter thus shows how Armenia’s longstanding interaction with international organisations facilitated the introduction of inclusive education whereas Hisayo Katsui highlights the limited reach of rights discourses in authoritarian Central Asian states. Although a number of East European and post-Soviet countries have signed the 2006 UN Convention on the Rights of Persons with Disabilities, this formal approach ‘on paper’ far from signifies the achievement of equality, support and tolerance in daily life. Instead, the process of ‘translating’ and implementing policies in local contexts inevitably alters original meanings and procedures (Lendvai and Stubbs 2007). This translation can blunt the impact of transnational norms, especially in terms of improving living standards and societal acceptance. Ideas of global rights can seem very distant in a region where basic needs are not guaranteed and social stigma can be emphatically hostile. Yet, disabled people and their supporters in the region have been often able to develop their own local innovations and strategies to solve their problems, as highlighted by the life histories of disabled citizens recounted in this book, for example Sarah Phillip’s discussion of disabled entrepreneurs in Ukraine and Eszter Gábor’s chapter on Hungarian students.

The evolution of disability studies in Eastern Europe Academic interest in disability in Eastern Europe and the former Soviet Union has long been fragmented and limited to research by individual scholars, mostly historians and sociologists. At the same time, English-language disability studies have only marginally engaged with the postsocialist region or indeed many other areas of the world. This neglect is partly explained by the linguistic challenges facing foreign researchers and preventing local scholars from engaging with overseas literature and disseminating their work through foreign-language portals. The logistics of undertaking research with marginalized and ‘invisible’ members of society can also be formidable. Nonetheless, the field of disability studies in Eastern Europe can be characterized as emergent and growing, particularly in recent years.

Disability in Eastern Europe 9 It is only in the last two decades that local and overseas scholars have been given some freedom to research experiences of disability in most postsocialist countries. As with poverty and other ‘social problems’, the study of disability was highly circumscribed by socialist governments, especially in relatively more authoritarian regimes such as the Soviet Union, Romania and Albania. Although research and public discussion on disability issues were permitted in Hungary (Gábor in this volume), Yugoslavia and East Germany (Poore 2007), foreign researchers in all parts of state socialist Europe had highly limited access to disabled people and the services purporting to support their welfare. The upshot was that scholars relied largely on formal documentation, statistics and literary texts to explore disability under state socialism. There was also a heavy focus – at least in English-language literature – on the Soviet Union, which was a common feature of Cold War research on the region. Such characteristics emerged in the only volume on disability in the region to have been published during the Cold War period (McCagg and Siegelbaum 1989), a pioneering work whose broad and multi-disciplinary perspectives make it an important reference point for even contemporary studies. The social and academic freedoms of perestroika in the late 1980s facilitated the first critical studies of disability and other social issues in much of state socialist Europe (e.g. Tsiviliev and Rogogin 1990). The legislative contexts around disability were also changing at this time with new welfare laws in many countries incorporating ideas of anti-discrimination and social participation. The first large survey of disabled people in the Soviet Union was conducted by the Soviet Ministry of Labour in 1990–91 with more than 1,300 disabled respondents (Dobrovol’skaya and Shabalina 1992). Questions about isolation, family life and participation in disability organisations represented a remarkable change from earlier studies on physical capacity or mental functioning. However, it was only in the mid to late 1990s that the first major publications considering disability as a cultural and social construction emerged in Russia, providing critical analysis of both everyday experience on a micro-level (Iarskaia-Smirnova 1997) and national disability policy (Maleva et al. 1999). Such work was fuelled by the removal of constraints on social research that accompanied the breakdown of socialist rule as well as greater access to international training and academic agendas. The fact that many of the contributors to this volume are native scholars demonstrates that disability is emerging as a legitimate topic of study in Eastern Europe and the former Soviet Union. However, there has been little move to institutionalize disability studies as a specific discipline in the region, for example through journals, conferences or mailing lists. As with subjects like gender studies (Temkina and Zdravomyslova 2003), there has been some resistance in local academic circles to both the topic of disability – which was neither traditional nor in line with policy agendas around market reform and entrepreneurship – and the overseas origins of the discipline of disability studies. Instead, research and teaching on disability have been folded into disciplines of history, sociology, social work and social policy (cf. Phillips 2011: 77), which may actually be useful in terms of ensuring that the topic enjoys a wide audience. There are promising

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signs that local disability studies are developing in the region with a growing number of postgraduate dissertations looking at disability, including by disabled students and the relatives of disabled people. One of the leading social policy journals in Russia recently dedicated an issue to disability histories (Journal of Social Policy Studies, Vol. 10, Issue 2, 2012). Interestingly, academic subjects traditionally associated with disability in the region, namely pedagogy and rehabilitation, have been less likely to offer critical studies of disability in the region than other disciplines, pointing to the difficulties of reorienting professional approaches and discourses since the end of state socialism. Until recently, English-language research on disability in Eastern Europe was rare and sporadic. During the 1990s, the study of disabled people’s lives was driven more by practitioners and activists than academics (Human Rights Watch 1998; Rosenthal et al. 1999; Sammon 2001). Such work often contained implicit or direct comparisons with Western countries without considering the contextual factors that distinguish policy processes, civil society and well-being in postsocialist countries. Notable exceptions included Anne White’s study of disability activism in the late Soviet period (White 1999) and on-going research by Ethel and Stephen Dunn into welfare provision for disabled people (Dunn 2000). Internationally funded projects to promote inclusive education and social work occasionally generated studies charting the transformation of disability services. Although such work had to struggle ethically and methodologically with using international criteria and Western methods as benchmarks (cf. Bridge 2001), it nonetheless represents a useful record of developments during the turbulent period of ‘transition’ away from state socialism. The amount of disability-related research on Eastern Europe began to grow in the early 2000s with pioneering studies by Elena Iarskaia-Smirnova (1999, 2001, 2002), Kate Thomson (2002a, 2002b, 2006) and Darja Zaviršek (2002, 2004, 2006). This work was important for its focus on the perspectives of disabled people and their families, particularly in relation to the use of state services and attempts to overcome discriminatory professional and social attitudes. Gender was an important theme, notably stereotypes around caregiving activities and sexuality, and the research often had a clear activist stance in terms of advocating inclusive approaches. In addition to this set of research, work appeared that discussed bodily difference, impairment and welfare institutions without explicitly foregrounding the theme of disability (e.g. Petryna 2003; Edele 2008). International organisations also started to pay greater attention to disability in the region as an important factor in raising well-being and promoting community-based solutions (e.g. UNICEF 2005; World Bank 2008). This volume comes at a time when a critical mass of interest and scholarly activity on disability in Eastern Europe and the former Soviet Union seems to have been reached. Sarah Phillips’ award-winning ethnography of ‘mobile citizenship’ in Ukraine was recently published and is the first English-language monograph on disability in the region (Phillips 2011). A round table ‘Dis/abling Slavic Studies’ was organized at the main Russian and Eastern European studies conference in North America (ASEEES) in November 2011 and attracted a full audience from

Disability in Eastern Europe 11 a range of disciplines. Recent work on welfare services, caring practices and health in the region also provides a useful tangential look at disability through discussions of child protection and HIV (Khlinovskaya-Rockhill 2010; Zigon 2011). Finally, a number of postgraduate students are completing theses and publishing their own work on disability in the postsocialist region that will enrich and expand the current field of research (Sinecka 2008; Hakumura 2009; Kayiatos 2010; Yankovsky 2011; Chupina 2011; Fröhlich 2012). These developments are encouraging, so we only cautiously mention that disability studies in the region is still a very fragile discipline and largely reliant on the work of individual scholars and small research groups. It can be difficult to find critical social research about disability in all postsocialist countries, something that the sharing of ideas and deeper collaboration between local and overseas scholars could help to address. Through their careful analysis of empirical cases, the authors in this volume demonstrate methodological and conceptual creativity in disability studies that can be usefully applied in other areas of the world. For example, chapters on policy transformation by Majda Bećirević, Monica Dowling, Hisayo Katsui and Victoria Shmidt offer comparative research that contextualizes local specifics against the wider factors affecting disability-related developments in the region. In so doing, the researchers eschew a methodological tendency within disability studies to present countries as case studies rather than draw wider lessons. In a different form of methodological innovation, Eszter Gábor uses a very precise form of biographical analysis to analyse how disability features in the life histories and personal recollections of Hungarian students. The book’s three historical chapters draw on fresh archival materials, including sources that have only recently been opened to researchers. The contribution by Elena Iarskaia-Smirnova and Pavel Romanov interrogates how disability featured in Soviet posters and films in line with the recent rise of visual analysis in history and sociology. At a theoretical level, it is original and exciting to see contributors engage with notions of intersectionality by looking at the interplay of disability and other markers of social difference, as Teodor Mladenov masterfully accomplishes in his exploration of disability, gender and sexuality in contemporary Bulgaria. This book highlights how disability studies are emerging to record the diversity of disabled people’s lives right across the postsocialist region. Although the chapters are wide-ranging in terms of topic and country focus, numerous issues about disability and disabled people in Eastern Europe remain understudied. Forms of disability that are not physical or mobility-related deserve particular attention. While the precise impairments and disabilities discussed in this volume stem from researchers’ own interests and available materials, it is clear that sensory impairments, learning disability and mental health have not received as much attention as physical disability. The same applies to experiences of disability in rural areas of Eastern Europe and the former Soviet Union, where the social context and physical environment pose distinctive challenges for disabled people and researchers (Kay et al. 2012). Finally, very little is known about the significant numbers of disabled people who still live in residential institutions that are highly criticized in the rare examples of work on this topic (White 1999; Vann and Siska

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2006; UNICEF 2010). Research on experiences in state care would need to overcome methodological issues of access, but could illuminate the experiences of a large group of disabled adults and children, especially those with learning disabilities.

Multidisciplinary perspectives on disability in Eastern Europe and the former Soviet Union Although chapters in this book often encompass history, everyday life and policy, they can nevertheless be grouped by their main emphasis to draw out wider conclusions about disability in the region. The historical contributions to the book all focus on the Soviet Union and demonstrate that understanding of disability was tightly interwoven with questions of military capacity, technological progress, economic productivity and social stigma. Beate Fieseler’s chapter (Chapter 2) traces the development of government discourses and practices for disabled military veterans from the late tsarist period to the era of high Stalinism after the Second World War. She analyses how the official approach changed dramatically from initial championing and support for former soldiers to outright disregard in line with ideological motives and resource constraints. Her social history also provides a crucial explanation for the frequent association in Soviet society of disability with poverty, incapability and pity. Frances Bernstein (Chapter 3) uses the example of an innovative prosthetic arm in the USSR to offer a cultural perspective on technology’s supposed role in ‘treating’ bodily impairment during the Second World War and its immediate aftermath. She juxtaposes the huge symbolic importance of the ‘Kononov arm’ in Soviet politics with the depressing realities of mass production that rendered the device largely unusable. The chapter thus reinforces messages from Beate Fieseler’s work that the Soviet state did not regard the needs of disabled people, even soldiers, as a political priority and consequently allocated very scant resources and support. In the final historical chapter, Elena Iarskaia-Smirnova and Pavel Romanov (Chapter 4) analyse representations of impairment and disability in film and posters during the 70 years of Soviet rule. They argue that disability was a metaphor in Soviet visual culture, acting as a ‘floating signifier’ without agreed meaning that could convey conflicting messages of heroism, loss, courage, protest, pity and welfare dependence. Together the three chapters highlight the negative connotations about disability that were generated from the very top of Soviet leadership, but often reworked and occasionally even challenged in everyday practice. The second set of chapters focus on the lived experiences of disabled people in the 20 years since the end of socialist rule. Agita Lu¯se and Daiga Kamera¯de (Chapter 5) explore how constructions of mental health are changing among medical professionals, media and the general public in Latvia. They find that Latvian psychiatrists are redefining Soviet-era concepts of mental health and adopting an increasingly inclusive approach in line with international practices. Societal opinion and media coverage are however lagging behind the professional reorientation

Disability in Eastern Europe 13 in psychiatry, creating a gap that undermines mental health reform and the development of community-based care. Eszter Gábor’s chapter (Chapter 6) analyses life histories to discuss the role that disability plays in the personal history and identity of Hungarian university students. Her careful methodology tracks how macro-level changes in policy and society entwine with individual circumstances to shape the responses of disabled Hungarians to changing opportunities for higher education. Teodor Mladenov (Chapter 7) also considers issues of personal identity in his thoughtful critique of how disabled people’s sexuality is misunderstood in contemporary Bulgarian society. Using phenomenological theories, he highlights various ways in which the topic of sex and disability is silenced in public discourses and discusses how disablist assumptions of asexuality can be challenged. The final chapter to consider everyday life comes from Sarah Phillips (Chapter 8), who looks at how disabled activists challenge dominant ideas of citizenship and disability in Ukraine. She focuses on financial and employmentrelated rights as crucial arenas in which struggles for recognition and redistribution are fought. Like the other three chapters about everyday life, she shows that individual agency and strategies for improving well-being and leading independent lives are constrained by policy and cultural influences. It is therefore crucial to change the macro-level context affecting the lives of disabled people, most notably state support, raising questions of policy reform that are addressed in the final section of this book. The last four chapters discuss policy interventions in the context of longstanding discrimination on the part of politicians and society. They all consider international influences on disability politics as well as widespread policy misunderstandings and neglect of disabled people. Darja Zaviršek (Chapter 9) offers a strong critique of contemporary workfare schemes for disabled people, arguing that the neoliberal messages of autonomy and merit currently dominating Eastern European social policies are not sustainable or positive for people with impairments, who become trapped in marginal and low-paid jobs. Hisayo Katsui (Chapter 10) draws on her development studies background to discuss how global discourses around human rights need to be carefully adapted to the Central Asian context in order to be effective. Her essay highlights a broad tension within disability policy in the region, namely how to balance international models with local political and economic realities. This theme is also explored in the chapter on inclusive education in the Balkans by Majda Bećirević and Monica Dowling (Chapter 11), who problematize the multiple influences on state policy and nongovernmental activity in relation to disabled children in the Balkans. The authors suggest that the plethora of contradictory initiatives in Bulgaria and BosniaHerzegovina undermines a clear focus on social inclusion. Their study recommends greater coordination and dialogue within policy communities to ensure that reform projects are locally generated and managed. Victoria Shmidt’s chapter (Chapter 12) offers one of the very few English-language analyses of disability policy in the Caucasus region. In discussing the different trajectories that Armenia, Azerbaijan and Georgia have taken towards inclusive education, she agrees with other scholars in the book that policy reform needs to be nuanced to fit with

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individual needs and local realities. Somewhat provocatively, she suggests that this may involve abandoning a sole focus on inclusive schooling in favour of diverse and interchangeable forms of education. Her analysis highlights the institutional context for successful reforms in the Caucasus, notably the need for mainstream schools to be overhauled so that inclusion is genuinely useful as well as the problems associated with the lack of networking between multiple organisations working with disabled children. In researching disability, the authors and readers of this book explicitly or implicitly seek to improve the lives of disabled people in Eastern Europe and the former Soviet Union. Their exposés of discrimination, exclusion and inequality represent powerful advocacy on behalf of people in socioeconomically and politically vulnerable positions. By raising awareness of disability issues in the region and promoting research on the topic, we hope that disability studies in Eastern Europe and the former Soviet Union will continue to grow and transmit the experiences of a group that until recently was largely unknown to politicians, society and academia.

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Disability in Eastern Europe 15 Ghai, A. (2002) ‘Disability in the Indian context: Post-colonial perspectives’ in M. Corker and T. Shakespeare (eds) Disability/Postmodernity: Embodying Disability Theory. London: Continuum, pp. 88–100. Goodley, D. (2011) Disability Studies: An Interdisciplinary Introduction. London: Sage. Hakumura, T. (2009) ‘The problems posed by communication tools in the lives of deaf people in Soviet Russia: A historical study on a series of social policies and their impact on deaf people,’ Japanese Slavic and East European Studies, 30: 19–44. Hughes, B. (1999) ‘The constitution of impairment: Modernity and the aesthetic of oppression’, Disability & Society, 14(2): 155–72. Hughes, B. (2002) ‘Bauman’s strangers: Impairment and the invalidation of disabled people in modern and post-modern cultures’, Disability & Society, 17(5): 571–84. Human Rights Watch (1998) Abandoned to the State: Cruelty and Neglect in Russian Orphanages. New York: Human Rights Watch. Iarskaia-Smirnova, E. (1997) ‘When there is a handicapped child in the family’, Russian Education and Society, 39(10): 54–68. Iarskaia-Smirnova, E. (1999) ‘“What the future will bring I do not know”: Mothering children with disabilities in Russia and the politics of exclusion’, Frontiers: A Journal of Women Studies, 20(2): 68–86. Iarskaia-Smirnova, E. (2001) ‘Social change and self-empowerment: stories of disabled people in Russia’ in M. Priestley (ed.) Disability and the Life Course, Cambridge: Cambridge University Press, pp. 101–12. Iarskaia-Smirnova, E. (2002) ‘Stigma “invalidnoi” seksual’nosti’ in E. Zdravomyslova and A. Temkina (eds) V poiskakh seksual’nosti. St Petersburg: Dmitrii Bulanin, pp. 223–44. Iarskaia-Smirnova, E. (2011) ‘“A girl who liked to dance”: Life experiences of Russian women with motor impairments’ in M. Jäppinen, M. Kulmala and A. Saarinen (eds) Gazing at Welfare, Gender and Agency in Post-socialist Countries, Newcastle upon Tyne: Cambridge Scholars Publishing, pp. 104–25. Ingstad, B. and Whyte, S. (eds) (2007) Disability in Local and Global Worlds. Berkeley: University of California Press. Kay, R., Shubin, S. and Thelen, T. (2012) ‘Rural realities in the post-socialist space’, Journal of Rural Studies, 28(2): 55–62. Kayiatos, A. (2010) ‘Sooner speaking than silent, sooner silent than mute: Soviet deaf theatre and pantomime after Stalin’, Theatre Survey, 51(1): 5–31. Khlinovskaya-Rockhill, E. (2010) Lost to the State: Family Discontinuity, Social Orphanhood and Residential Care in the Russian Far East. Oxford: Berghahn. Kochergin, E. (2007) Angelova kukla: Rasskazy risoval’nogo cheloveka. St Petersburg: Ivan Limbakha. Lal, D. (1991) ‘Social policy after socialism’, paper prepared for Kiel Institute of World Economics, Annual Kiel week conference on ‘The Transformation of Socialist Economies’, 26–28 June 1991, available online at www.econ.ucla.edu/workingpapers/wp641.pdf (accessed 9 November 2012). Lendvai, N. and Stubbs, P. (2007) ‘Policies as translation: situating trans-national social policies’ in Z. Irving and S. Hodgson (eds.) Reconsidering Policy: Meaning, Power and Practice. Bristol: Policy Press, pp. 173–89. McCagg, W. and Siegelbaum, L. (eds) (1989) The Disabled in the Soviet Union. Pittsburgh: University of Pittsburgh Press. McWhorter, L. (2005) ‘Foreword’ in Tremain, S. (ed.) Foucault and the Government of Disability. Ann Arbor: University of Michigan Press.

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Maleva, T., Vasin, S., Golodets, I. and Besfamil’naya, S. (1999) Invalidy v Rossii: prichiny i dinamika invalidnosti, protivorechiya i perspektivy sotsial’noi politiki. Moscow: ROSSPEN. Meekosha, H. (2011) ‘Decolonising disability: thinking and acting globally’, Disability & Society, 26(6): 667–82. Morris, D. (2000) Illness and Culture in the Postmodern Age. Berkeley: University of California Press. Oliver, M. (1990) The Politics of Disablement. London: Macmillan. Petryna, A. (2003) Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton University Press. Phillips, S. (2009) ‘“There are no invalids in the USSR!” A missing Soviet chapter in the new disability history’, Disability Studies Quarterly, 29(3), available at http://www. dsq-sds.org/article/view/936/1111 (accessed 20 June 2010). Phillips, S. (2011) Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington: Indiana University Press. Poore, C. (2007) Disability in Twentieth-Century German Culture. Ann Arbor: University of Michigan Press. Priestley, M. (ed.) (2001) Disability and the Life Course. Cambridge: Cambridge University Press. Rosenthal, E., Bauer, E., Hayden, M. and Holley, A. (1999) Children in Russia’s Institutions: Human Rights and Opportunities for Reform. Washington DC: Mental Disability Rights International. Sammon, E. (2001) ‘Defying prejudice, advancing equality 2: Children and disability in the context of family breakdown in Central and South Eastern Europe and the former Soviet Union’. London: Everychild. Schweik, S. (2009) The Ugly Laws: Disability in Public. New York and London: New York University Press. Shildrick, M. (2005) ‘The disabled body: genealogy and undecidability’, Cultural Studies, 19(6): 755–70. Sinecka, J. (2008) ‘“I am bodied.” “I am sexual.” “I am human.” Experiencing deafness and gayness: a story of a young man’, Disability & Society, 23(5): 475–84. Smart, J. (2001) Disability, Society, and the Individual. Gaithersburg, MD: Aspen Publishers. Stark, D. and L. Bruszt (1998) Postsocialist Pathways: Transforming Politics and Property in East Central Europe. Cambridge: Cambridge University Press. Stiker, H. (1999) A History of Disability. Ann Arbor: University of Michigan Press. Temkina, A. and Zdravomyslova, E. (2003) ‘Gender studies in post-Soviet society: Western frames and cultural differences’, Studies in East European Thought, 55(1): 51–61. Thomas, C. (2007) Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology. Basingstoke: Palgrave Macmillan. Thomson, K. (2002a) ‘Differentiating integration: special education in the Russian Federation’, European Journal of Special Needs Education, 17(1): 33–47. Thomson, K. (2002b) ‘Regional welfare system developments in Russia: Community social services’, Social Policy and Administration, 36(2): 105–22. Thomson, K. (2006) ‘Disability organisations in the regions’ in A. Evans, L. Henry and L. McIntosh (eds) Russian Civil Society: A Critical Assessment. New York: M. E. Sharpe, pp. 229–45. Tsivilev, R. and Rogogin, V. (1990) ‘Social assistance for the elderly and the disabled in the USSR’, International Social Security Review, 43(2): 180–88.

Disability in Eastern Europe 17 UNICEF (2005) Children and Disability in Transition in CEE/CIS and Baltic States. Florence: UNICEF Innocenti Research Centre. UNICEF (2010) At Home or in a Home? Formal Care and Adoption of Children in Eastern Europe and Central Asia. Bratislava: UNICEF Regional Office for CEE/CIS. Vann, B. and Siska, J. (2006) ‘From “cage beds” to inclusion: the long road for individuals with intellectual disability in the Czech Republic’, Disability & Society, 21(5): 425–39. White, A. (1999) Democratization in Russia under Gorbachev 1985–91. Basingstoke: Macmillan. World Bank (2008) Economic Implications of Chronic Illness and Disability in Eastern Europe and the former Soviet Union. Washington D.C.: World Bank. Yankovsky, S. (2011) ‘Neoliberal transitions in Ukraine: The view from psychiatry’, Anthropology of East Europe Review, 29(1): 35–49, available online at https://scholarworks.iu.edu/journals/index.php/aeer/article/view/1057 (accessed 1 July 2013). Zaviršek, D. (2002) ‘Pictures and silences: memories of sexual abuse of disabled people’, International Journal of Social Welfare, 11(4): 270–85. Zaviršek, D. (2004) ‘Surviving ethnicity and disability – minority children in public care’ in S. Trygged (ed.) Moving Away from Residential Care. Department of Social Work, Stockholm University, pp. 23–37. Zaviršek, D. (2006) ‘Disabled women’s everyday citizenship rights in East Europe: Examples from Slovenia’ in J. Lukic, J. Regulska and D. Zaviršek (eds) Women and Citizenship in Central and Eastern Europe. Aldershot: Ashgate, pp. 185–204. Zigon, J. (2011) “HIV is God’s Blessing”: Rehabilitating Morality in Neoliberal Russia. Berkeley: University of California Press.

2

Soviet-style welfare The disabled soldiers of the ‘Great Patriotic War’ Beate Fieseler 1

From its very inception the Soviet leadership accorded the idea of state welfare a central place in its political propaganda, declaring – in line with Marxist tradition – that it wanted to create a new, just and content society in which exploitation would be abolished and population well-being guaranteed. This rhetoric was maintained until the very collapse of the system. How these postulates really shaped the character of the Soviet state is still a matter of dispute today. Since the 1960s academics have analysed Soviet social policy by studying official statements, state propaganda and the effectiveness of particular areas of public welfare. At that time, Alec Nove raised the essential question of the extent to which the Soviet Union was genuinely a ‘welfare state’,2 although historical research (unlike sociological analysis) did not follow his lead in a systematic way so that even today no comprehensive answer has been reached.3 After the collapse of the Soviet system, Stephen Kotkin took up the issue once more and emphasized that Soviet socialism was ‘a pivotal case for understanding the matrices of social welfare’.4 He termed the Soviet system a ‘welfare state’ without examining its actual achievements and the way it functioned.5 More recent research – often archival case studies by Russian authors – has investigated the discrepancy between state proclamations and social reality by focusing on individual areas of Soviet social policy.6 Such work views Soviet social policy much more through the prism of ‘care and duty’ or ‘care and control’ than was the case in the 1960s. These studies reveal the Soviet Union to have been anything but a society striving for social equilibrium and the allocation of welfare resources according to need.7 It was instead much more a stratified system with a pronounced welfare hierarchy; it even tolerated ongoing poverty among large social groups because it was much more committed to an individualistic meritocratic approach focused on employment than to the establishment of equality of outcome.8 This chapter engages with this debate on Soviet welfare policies by focusing on the material well-being of disabled servicemen through the presentation of new research findings derived from a wide range of sources (contemporary publications and a wealth of archival material from the central Russian archives GARF and RGASPI).9 It explores the extent to which the Soviet state lived up to the task of delivering ‘all-encompassing care’ to veterans, which it proclaimed to be a ‘sacred duty’,10 how it satisfied the expectations that had been aroused11 and how

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it made disabled servicemen fulfil their obligations towards the Soviet state. First I sketch the material and institutional conditions that the Bolsheviks inherited and then I look at several arenas of soldier-state interaction: processes for officially recognizing need; pensions and benefits for injured military personnel; the reintegration of disabled soldiers into working life; and, lastly, their discontent with the Soviet social welfare system. The chapter will argue that Soviet state care for the disabled soldiers was not provided on an egalitarian basis or according to need. It instead established a welfare hierarchy which put those who were still able to work in a considerably better position compared to those completely unable to engage in employment. All in all, the majority of disabled servicemen did not receive the ‘all-encompassing care’ that Soviet welfare rhetoric promised them, but were treated so inadequately that they had to live in poverty. The obligation of every individual to work was laid down in the first Soviet Constitution of 1918, which succinctly stated that ‘He who does not work shall not eat’.12 Accordingly, the official Soviet concept of social welfare, particularly in the Stalin period, declared that only people who were unable to work and had no other means of subsistence were entitled to state support.13 Article 120 of the Soviet Constitution of 1936 affirmed that all citizens of the USSR had a fundamental right to material care in old age, in the case of illness and if they lost the ability to work.14 Communist Party General Secretary Stalin specified in a speech in the same year that a citizen’s financial standing, ethnicity, gender or occupation should not determine their place in society, which would instead be set by their personal abilities and achievements in work.15 The connection between [the willingness to] work and entitlement to receive social benefits could hardly have been closer. Given this background and expectation that citizens should work, it is pertinent to ask what kind of monopolized state welfare was offered by the Soviet Union to its disabled soldiers (invalidy voiny) from the ‘Great Patriotic War’, who had partly or fully lost their ability to work as a result of their military service. The group of ex-servicemen are an ideal focus of study due to their number and definition; they paid for the survival of the Soviet state with their health and, as disabled soldiers, had reason to expect special treatment. From the summer of 1942 onwards, editorials in the Party mouthpiece Pravda (Truth) and various articles in the military press, for example in Krasnaya Zvezda (Red Star), made bold claims such as: Caring for disabled veterans of the Great Patriotic War is the sacred duty of the whole Soviet people. A soldier who has shed his blood in the battles against the German aggressors is someone the Soviet motherland will never forsake.16 The demand for comprehensive social assistance for disabled ex-servicemen contained in such proclamations stood somewhat in contradiction to the state’s monopoly in the social sphere. When the call was voiced amidst the turmoil of war it evoked a vision of steadfast unity between the military and home fronts, the

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people and the government, and thus fulfilled an important ideological function. A change in tone was however noticeable in the second year of the war: state propaganda, which vaunted the Soviet Union’s comprehensive care for its disabled soldiers, started to express what the state expected or demanded in return – the veterans’ part of the bargain. If they were no longer fit for the front, former soldiers with disabilities were to return to the ‘fronts of industry’ as soon as possible as civilian labour.17 Soviet care for disabled soldiers was thus conceived as a pact between the regime and society, as an interrelationship between state services and society’s quid pro quo. The state was to take on a caregiving role, the population was to assume a supporting role and disabled soldiers were to be willing workers. Thus, in May 1945, Pravda declared that care for war victims was the state’s most important future responsibility: None of those who risked their lives and sacrificed their health in the war must ever feel superfluous or like a worthless cripple – not even for one second. They must feel they are useful, fully-fledged members of society and be certain that all the doors to work and creative activity are open to them.18 It is the realization of this policy change and its implications for disabled soldiers’ well-being that interest me in this chapter.

Historical background In the final years of tsarist Russia the entire welfare system was still in its infancy and care for disabled ex-servicemen lay primarily in the hands of private philanthropists.19 This changed however with the law of 25 June 1912,20 in which the Russian government laid the foundations for public payments to injured soldiers and, for the first time, recognized the entitlement of all disabled military personnel to pensions and free prosthetic devices.21 An applicant’s assets and family situation played no role – the degree of physical impairment alone determined the level of a pension. Private charity nevertheless remained important as the payments did not cover the minimum income needed to survive.22 Despite the immense costs involved, the Provisional Government (February– October 1917) continued this new course in social policy by increasing benefits for ex-servicemen23 and creating the Ministry of Public Welfare (Ministerstvo gosudarstvennogo prizreniya) – a novelty in Russian history. The administrative foundations for a modern welfare state were thus laid in an attempt to overcome the country’s backwardness in this field. At the same time the care of disabled ex-servicemen was declared to be a governmental task.24 A new goal was formulated: to replace the previous focus on material support with ‘help to self-help’,25 which was essentially a reference to publically funded reintegration into working life.26 In addition, a fundamental reform of the private charity system was planned. Instead of reforming private charity, the Bolsheviks did away with all existing private philanthropic institutions after the October Revolution and by 1920 had

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brought the entire field of social welfare under public control. They self-assuredly assumed that the welfare institutions of the future Soviet state would render every kind of traditional charity redundant. In order to erase all memory of the pre-socialist period with its religiously inspired care for the poor and needy, on 17 April 1918 the public authority responsible for disabled servicemen was renamed the ‘People’s Commissariat of Public Welfare’ (Narkomsobes) and the customary, emotionally charged designation ‘maimed soldier’ (uvechnyi voin) was replaced by the neutral term ‘disabled serviceman’ (invalid voiny). For practical reasons, namely empty coffers, it was only possible to pay an elementary, minimum income to ‘persons unable to work’. After all, the Constitution of 1918 established the requirement to work for every individual as a basic social principle in the Soviet Union.27 A new concept of social welfare thus won ground: only persons who were completely incapacitated, unable to work and who genuinely had no other means of subsistence (other income, support from family etc.) would be able to benefit from state support.28 Since serving the interests of workers was also a priority, the emphasis of welfare policy shifted away from disabled servicemen. During the New Economic Policy (NEP) of the 1920s practically nothing remained of the tsarist government’s care obligation of 1912 which had guaranteed all sick and wounded soldiers the right to a pension. The overwhelming majority of the 2.7 million disabled soldiers of the First World War and Russian Civil War – predominantly peasants – thus received no regular financial support from the early Soviet government. The top echelons of the Party and government pleaded for disabled servicemen to be comprehensively reintegrated into working life instead of fostering their ‘sinecure mentality’ with pensions.29 This was, however, out of the question given high unemployment during the NEP. From that time on, public care for injured soldiers on the one hand and disabled workers on the other drifted ever further apart. Disabled ex-servicemen only profited from the country’s economic recovery late in the course of the NEP. Whereas care for disabled workers made perceptible progress from 1924,30 the number of pensioned ex-servicemen and the level of their pensions continued to be subject to budgetary constraints.31 Disabled ex-servicemen in rural areas remained disadvantaged. They had absolutely no benefit from the ‘turn to the village’ (litsom k derevne) outlined in the economic policy of 1924–25.32 The arguments used by the Narkomsobes in favour of extending care of injured soldiers to peasants fell on the deaf ears of the political leadership for a long period of time.33 It was not until the tenth anniversary of the October Revolution in 1927 that the budget of the People’s Commissariat of Public Welfare was significantly increased, allowing the number of disabled servicemen receiving pensions to increase every year from then on.34 However, the state’s new generosity mainly benefited disabled veterans of the Civil War. All in all, the abject poverty of disabled servicemen remained a mass phenomenon throughout the 1920s, but it was at least discussed in public and recognized as a social problem. Efforts were made to alleviate veterans’ hardships through publically controlled fundraising activities (donations, lotteries, the sale of commemorative stamps, calendars etc.). Prints with depictions of begging disabled

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servicemen matched the population’s readiness to help.35 The state thus did not conceal that it was unable to fully meet its obligations towards former soldiers and acknowledged that it was dependent on support from society. Over time, however, non-state assistance was increasingly sidelined and by the end of the 1920s it was clear that the government intended to solve the population’s problems solely with public funds. Active reintegration into working life thus became the basic instrument of state support for disabled veterans and a draft government resolution in 1930 declared it the ‘most practical form’ of public welfare.36 The Soviet state’s comparatively open and pragmatic approach towards disability ended abruptly in the 1930s. All existing societies and committees for aid to disabled soldiers were disbanded in 1935 as their activities had officially been declared ‘redundant’.37 This by no means corresponded to social reality, so other methods were chosen to make society conform to state rhetoric. Undesirable social phenomena were defined out of existence and individuals regarded as falling into such a category were treated with corresponding rigour and even repression. In 1935 Stalin proclaimed that life in the Soviet Union had become ‘better, and happier too’38 and by definition there was no longer any place for inadequately supported disabled people. In order to prevent the accumulation of déclassés and other ‘marginals’ in large cities and industrial centres, the government introduced internal passports in late 1932.39 Persons without regular employment and fixed abode were no longer allowed to stay in that city – they were branded ‘socially harmful elements’ (sotsial’no-vrednye elementy) to be persecuted and prosecuted by special police units.40 Police forces began to target outcasts and outsiders, including disabled servicemen who were begging and homeless and allegedly posed a threat to the Soviet state.41 Social control and state security became increasingly fused and the concept of a ‘menace to society’ spread like wildfire. Large-scale raids were carried out in 1935–36 against unemployed and homeless people, vagabonds and ‘professional’ beggars who were expelled from cities in concerted purges. These people were not ‘class enemies’ and did not have to be guilty of any offence – their very way of life (having no fixed abode, begging or illicit trading) sufficed for them to be considered social deviants. They were punished for having successful survival strategies which they had adopted out of necessity over the previous two decades. Yet there was no place for such ‘deviant’ behaviour in the new socialist society because the Soviet order was not supposed to have any ‘losers’. In official circles, people in need only had themselves to blame: ‘individuals now had the choice of conforming to the new society or putting themselves outside it’.42 As a way of integrating the part of the ‘socially harmful’ population who were disabled veterans, the state offered to house them in hostels, but the number of places was far from adequate.43 Disabled veterans who were unable to work were therefore caught up in the wave of purges, expelled from cities, forced to settle elsewhere and even punished with up to five years in a labour camp for ‘socially harmful’ or ‘antisocial’ behaviour.44 The campaigns of repression peaked in 1937–38 with the bloody ‘mass operations’ of the Great Terror,45 one of whose objectives was rooting out social disorderliness once and for all. Although they certainly were

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not the main target, unemployed and homeless veterans were among the victims of the purges.46 The ‘socialist offensive’ in dealing with disabled servicemen was pursued not only with repressive means, but also through ideology. Heroic passion compensated for the lack of genuine public welfare and went hand in hand with the state’s terroristic practices. The myth of the Civil War had to be popularized in order to mobilize the population – in particular young people – for numerous new ‘fronts of industry’. Yet real disabled servicemen were not suitable role models. They had learned the hard way what struggle meant and as a direct result were no longer able to fight ‘battles to increase production’; their primitive wooden crutches and empty sleeves were a reminder that not all wounds and impairments could be ‘overcome’ by energy and willpower. They were therefore swept under the carpet of a 1930s society committed to enthusiasm, optimism and heroism. It was symptomatic and at the same time revealing of the state of Soviet society in the early 1930s that a fictional disabled veteran was championed as a glowing role model. The novel How the Steel was Tempered47 (1932–34) by Nikolai Ostrovskii furnished a ‘fitting hero’ – Pavel Korchagin, a disabled serviceman who sacrificed himself and fought to his last breath to build socialism (cf. Iarskaia-Smirnova and Romanov in this volume). The book does not address the cruelty of war and the agony of the wounded, but glorifies tireless struggle.48 It denies the existence of physiological boundaries that cannot be mastered by human endeavour. Pavel Korchagin was the heroic victim whose iron will kept him in constant combat-readiness, despite his physical decline, and enabled him to perform at peak levels. He occupied a central position in the pantheon of totalitarian heroes and became a powerful example for many people, including disabled members of the population.49 The Soviet regime’s main instruments for dealing with disability were thus in place by the outbreak of war in 1941: ideology, repression and a belief that work was the best means of rehabilitation. No distinction was made between civilian and military disabled people. Regardless of whether the physical impairment was incurred at work or whilst defending the country, public welfare was first and foremost to serve the ‘socialist offensive’ and help increase production. In view of the ambitious industrialization plans that devoured most of the state’s resources, there was no possibility of significantly increasing social spending and intensifying integration programmes. Instead, disabled people were subjected to high demands and enormous pressure to conform. The social legacy of the First World War and the Civil War was thus to be ‘surmounted’ without great expense: with ideological axioms and violence if necessary. This mixture of minimal care, pressure to reintegrate, repression of ‘marginal’ individuals and groups and all-encompassing hero-worship shaped public attitudes to disabled servicemen from the 1930s until long after the ‘Great Patriotic War’.

No benefits for those who can work: the search for recognition by disabled veterans The health-related view of disability which had prevailed in tsarist Russia and the early Soviet Union was superseded in 1932 by a new concept embedded in

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labour-supply considerations.50 Disability was no longer automatically equated with physical impairment, but only recognized when it meant a partial or total loss of the ability to work. The first category of disability under the new definition – the ‘severely disabled’ (Group One) – encompassed all persons ‘completely unable to work’ and also ‘dependent on constant care’. The second group comprised those completely unable to work, but not in need of care. Finally, the third category combined those partially able to work, who could be employed under simplified conditions in low-qualified occupations with correspondingly low income.51 All those whose impairment did not force them to give up their profession were not recognized as disabled and had no pension entitlements at all – even when their functional handicap was considerable.52 This production-related view of disability was first applied on a large scale to the millions of soldiers who were physically impaired in the ‘Great Patriotic War’ (over 18 million wounded or seriously ill soldiers), of whom 3.8 million were discharged from the Red Army as disabled during the war. In the post-war years alone somewhere between 2.6 and 2.8 million of these were recognized as disabled veterans and entitled to corresponding public benefits.53 The doctors who assessed and awarded disability classifications were instructed by the Ministry of Social Affairs, in ever newer briefings, to apply extremely strict standards. The example was given of an accounts clerk with a prosthetic device for his amputated lower leg. He was considered fully fit for employment and thus not to be recognized as a disabled serviceman even though his impairment had led to his discharge from the army. The instructions said the admission of such cases to the third category was only possible for temporary periods when a wound needed to heal or to allow the person to adapt to new circumstances, for example using prosthetic devices or writing with the left hand.54 According to the welfare ministries, war wounds represented no disability at all, could be cured or were to be overcome through adaptation in the form of work, if necessary through a different kind of work to that performed before the war. The physical impairment itself was thus trivialized and its consequences for the individual downplayed. Following a government directive, disabled servicemen were regrouped between 1942 and 1948 in such a way that the majority of them became officially available as manpower for the war economy and post-war reconstruction (Table 2.1). It is particularly striking that the percentage of disabled ex-soldiers in the second category declined markedly in favour of the third. Whereas the second Table 2.1 Distribution of disabled servicemen in groups, RSFSR 1942–48*

Group 1 Group 2 Group 3 *

Sept 1942 (%)

Oct 1944 (%)

Jan 1945 (%)

Apr 1948 (%)

1.6 52.7 45.7

1.53 35.4 63.1

1.5 33.9 64.6

1.9 21.1 77.0

GARF (filial’) A-413/1/234, sheet 85; RGASPI 17/122/21, sheets 84–86; RGASPI 17/122/71, sheets 195 – 198; GARF (filial’) A-413/1/460, sheets 2, 4; RGASPI 17/131/36, sheets 3, 10.

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category made up the majority of all disabled servicemen (52.7 per cent) in September 1942, the percentage declined to a third in January 1945 and to just 21.1 per cent in April 1948.55 Three years after the war’s end more than threequarters of all recognized Soviet disabled servicemen (77 per cent) belonged to the third group and were thus expected to work normal working hours. Although they had to earn their living largely by themselves, many people in this group ended up in unqualified and poorly paid posts.

Not enough to live on: pensions for disabled soldiers During the war years the Soviet leadership was faced with the task of materially supporting a constantly growing group of people who had lost either their ability to work or their breadwinner, but had nothing to offer society in return. This called for a clear shift of emphasis compared to the previous decade and a half, when public welfare had been minor. Whereas social policies in Stalin’s ‘revolution from above’ had focused on employees of enterprises, classic public welfare was now required for millions of disabled persons as well as widows and orphans. The Soviet state accepted this challenge, but sought to restrict the number of applicants by limiting entitlement periods and keeping benefits as low as possible. At most, state support covered the absolute basics and in many cases not even that. The regime was not prepared to make greater material concessions or fundamentally reorient its social policy. A fixed public pension irrespective of previous income or military rank was already offered to disabled servicemen of the First World War (the ‘imperialist war’) and the Civil War, with the latter receiving higher benefits – loyalty to the regime was financially rewarded.56 These pensions, on the whole very low, were raised by 50 per cent on 16 July 1940.57 At the same time, considerably better pensions were introduced for soldiers, sailors and non-commissioned officers of the Red Army and Soviet Navy who had become partially or completely unable to work in the course of military duty after 1 January 1938.58 From then on pension levels no longer depended solely on the degree of disability, but also on military rank and – as a new principle – on previous income. Salary levels now had greatest influence on the level of pensions and the degree of disability was a lesser factor (Table 2.2).59 Table 2.2 Pensions for disabled servicemen completely (Group 1) or partially (Groups 2 and 3) unable to work as a result of military duty, 1 January 1938

Group 1 Group 2 Group 3

Pension value for disabled servicemen without a connection to agriculture (%)

Pension value for disabled servicemen with a connection to agriculture (%)

100 (of previous salary) 75 50

80 (of previous salary) 60 40*

* However, the pensions calculated according to this method were not allowed to fall below the rates of the fixed formula.

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Table 2.3 Pensions for former peasants or students injured during military action, 1 January 1938

Group 1 Group 2 Group 3

Pension value for former students without a connection to agriculture (roubles)

Pension value for former students or peasants with a connection to agriculture (roubles)

150 120 90

120 96 72

The maximum pension was 400 roubles.60 As had previously been the case, former peasants, students as well as the rural population in general received lower pensions and thus were always disadvantaged compared to urban workers and administrative employees (Table 2.3). On 28 January 1946, the minimum pensions for disabled servicemen of the first category were doubled from 150/120 roubles (city dweller/country dweller) to 300/250 roubles61 but they were still lower than minimum subsistence levels for that period.62 Pensions for non-commissioned officers were 25 per cent higher than the rates given above63 and officers received even more. Appreciable pension increases for all disabled servicemen did not come until the mid-1960s.64 From early 1943 onwards the requirement to work applied to all disabled persons of the third category and people labelled as ‘work-shy’ risked losing their pensions, once more proving the significance of work in the Soviet welfare system. Within the group of disabled servicemen entitled to a pension, those who worked were always considerably better off than those who were unable to do so. While all war disabled belonging to the third category were required to work, they were still allowed to claim a small disability pension in addition to their salary. Pensions ranged from 72 to 400 roubles, allowing only an exceedingly meagre life to persons wholly reliant on this income, whereas some disabled servicemen in employment could achieve quite a decent income. Only a minority enjoyed the highest pension of 400 roubles. Despite being recognized by the state as disabled veterans, the social situation of the majority of disabled ‘Great Patriotic War’ soldiers meant one thing: poverty. Pensions alone could in no way cover life’s necessities and pressure for recipients to work remained, especially since the reconstruction of the country demanded the commitment of every halfway employable worker. Many disabled servicemen preferred to beg or to live from small-scale black-market trading; others plied the population with various skills (playing the accordion, singing, parading trained animals etc.) for a small donation.65 Whoever wanted to use these alternative survival strategies (which were often more lucrative than wages and pensions) was able to do so in relative safety until the late 1940s, but from the early 1950s these inventive disabled veterans were increasingly prosecuted as ‘anti-Soviet elements’.66 As part of measures first taken in July 1951 to do away with begging in Moscow and the Moscow region, many severely disabled veterans, who made up the largest group of beggars in the

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capital,67 also fell into the net of the police. Since they were unable to work they were taken to residential homes for disabled soldiers located mostly in distant regions. The best-known of these homes was on Valaam Island in Lake Lagoda.68 These institutions were infamous for their squalid living conditions and many of the disabled veterans reprimanded for begging refused to move there.69 The pension system in the immediate postwar period was thus meticulously gradated according to a ‘divide and rule’ principle that established great differences in the benefits enjoyed by various groups of disabled servicemen and also led to a certain erosion of solidarity. Instead of fostering a collective identity among ‘comrades in misfortune’, the ‘misplaced egalitarianism’ (uravnilovka) that was much reviled at the time was subjected to all-out attack in the field of disability pensions. The pensions of the ‘Great Patriotic War disabled’ aroused the envy of the maimed soldiers of earlier wars, who were much less well off. Everyone eyed each other warily, comparing, calculating and suspecting others of receiving more, especially after most material bonuses connected with military honours and medals were abolished without replacement in 1947/48 so that those who were not maimed no longer had any privileges worthy of mention.70 Almost all complaints to public welfare offices contained denunciations of alleged ‘speculators’ or the ‘work-shy’. One file reveals how a man with an amputated hand demanded a higher pension than one with an amputated leg because the latter could work after all, but he was a writer.71 Despite all the instances of arbitrariness, obstinacy and red tape in the welfare offices, pension payments were the only aspect of public care for disabled ex-servicemen that functioned more or less smoothly.72 They also swallowed up the lion’s share of expenditure on welfare.73 Although pension payments were low, they were supplemented by a seemingly random array of one-off payments and non-cash assistance from various institutions, including welfare offices, Party committees, Soviets, trade unions, the Komsomol, enterprises, churches and the Red Cross.74 Yet these funds rarely benefited the neediest, instead going to the more mobile and resourceful disabled servicemen who demanded them the most persistently – from all welfare offices at the same time. The professional thief and fraudster Veniamin B. Vaisman pulled off the biggest coup. Fleeing from a penal camp in 1944, he suffered such severe frostbite that both his legs and one hand had to be amputated. Soon afterwards he passed himself off as a disabled serviceman and twice-decorated ‘Hero of the Soviet Union’. With a row of medals dangling from his chest he systematically visited various state organizations and presented himself as a former member of staff. By the time of his arrest on 30 May 1946 he had obtained over 50,000 roubles in cash as well as goods to the value of 30,000–40,000 roubles from 32 ministers or their deputies and also the Central Committee of the Communist Party itself. He was additionally given letters of reference for a flat, regular medical treatment and state-of-the-art prosthetic legs.75 The Soviet authorities rarely showed such generosity towards seriously disabled people, regardless of whether they were war victims or civilians. The neediest and the honest ones ultimately fell by the wayside, while imposters and defrauders were able to grab a large piece of the less-than-ample public welfare cake.

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The lower end of the hierarchy: the reintegration of disabled soldiers into working life From a purely quantitative point of view the return of disabled Soviet servicemen to working life was a great success. Work was proclaimed to be the most important instrument of reintegration into society. In 1948/49, according to official figures, over 90 per cent of all disabled servicemen had returned to regular work and thus at least were ‘off the streets’. However, the problems connected to the integration of hundreds of thousands of disabled servicemen into the workforce were still far from solved. Above all there was a scarcity of training opportunities. A total of 173,000 disabled servicemen were recorded as having undertaken retraining between 1941 and 1945 and an impressive 350,500 people in the RSFSR alone from 1941 to 1948, which indicated a considerable intensification of labour schemes after the end of the war.76 However, it is important to interrogate what such figures really say. The courses did not last very long and one should bear in mind that by 1948 more than half (53 per cent) of all registered disabled servicemen77 had not completed any training at all78 while another large cohort could no longer practise their previous occupation. As such, around a million people would have needed retraining in Soviet Russia alone. This goal was never achieved – not even in quantitative terms. As far as the quality of the retraining schemes was concerned, most did not go beyond a brief introduction to the new job. Many peasants disabled during the ‘Great Patriotic War’ returned to their villages with no training at all. They allegedly took on office posts in the administration of kolkhozes (collective farms). As may have been the case with some disabled servicemen, the bulk of disabled peasants ended up at the lowest end of rural society. Agricultural work is physically strenuous and only a few of the disabled returnees were able to perform manual farm work, meaning that many worked as cleaners, errand-boys, postmen, shepherds, gardeners, sales assistants in village-cooperative shops or farm hands.79 Staff in these roles could at best earn half of the average salary for kolkhoz members and their income could only be described as measly.80 In 1950 just 28.7 per cent of disabled servicemen living in the country performed skilled work.81 The proportion of unskilled labourers and casual workers – and thus the penury among disabled servicemen – must therefore have been greatest in agriculture given that pensions in this sector were among the lowest as well. Those disabled servicemen who had been employed in industry before the war generally tried to find work in their former enterprises.82 Despite the great shortage of labour in the country even employees of long standing were often unable to return to their previous collectives.83 Severely disabled ex-servicemen were most frequently rejected since the factory managers considered them to be ‘cripples’84 or feared that workers fit only for limited employment would impede the fulfilment of production targets. This was a concern because industrial enterprises received no credit for employing disabled servicemen and their production goals were not lowered commensurately.85 Many companies therefore did not want to

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employ disabled servicemen at all: ‘I’d rather give the job to a prisoner than a disabled serviceman’, the manager of the Dalstroi construction directorate said when commenting on the application of a disabled soldier.86 One manager informed the welfare offices in advance that he ‘did not need any disabled soldiers’.87 For many disabled servicemen reintegration through work therefore amounted to a demotion, even for those who were well qualified and had only a slight physical impairment. They complained to various authorities about the downgrading that took place at all levels of industry. There is no way of telling how often the ex-servicemen were successful in their complaints. Such problems remained unsolved and filled welfare office files from the early 1940s until well into the 1950s. The disabled servicemen in unqualified jobs included many former workers whose wounds prevented them from working in factories at the pace required to fulfil production norms88 – they had to switch to auxiliary jobs outside the actual production process where hourly wages rather than piecework rates applied.89 The Ministry of Public Welfare considered their consequent employment as watchmen, gatekeepers, janitors, cleaners and cloakroom attendants90 to be ‘appropriate ‘ and a ‘legitimate tendency’91. Many highly qualified and experienced workers, engineers and technicians also ended up in such jobs either because they were no longer capable of working in their old occupation due to war injury92 and lack of retraining, or because enterprises, welfare offices and army commissariats placed disabled people at the lower end of the workplace hierarchy.93 There were also many disabled servicemen who had been mobilized into the Red Army straight from school and thus had no occupational training at all. Once disabled servicemen found employment as unskilled assistants, no one attended to their professional advancement or the raising of their qualifications.94 Public welfare offices filed such cases away as ‘successfully referred’ while enterprises paid no attention to retraining the disabled servicemen they employed.95 For many disabled servicemen, reintegration into industry was therefore accompanied by a drop in professional status and a fall in income. Not only were the typical positions of watchman and janitor poorly paid, but it was generally not possible to augment low basic wages by overfulfilling production targets. A low rank in the workplace hierarchy often went hand in hand with limited access to the social benefits provided by an enterprise. This was particularly apparent in the provision of living space, which had become even scarcer as a result of the war and was thus an especially prized commodity. In line with a government decision, disabled servicemen were supposed to have priority access to living space, but enterprises primarily looked after non-disabled and better-qualified staff who they wanted to retain. Disabled servicemen often had no choice but to move into unsanitary barracks that were full of lice and lacked electricity, heating and often beds.96 Many other goods and benefits they were supposed to receive (fuel, additional food and clothing) existed only on paper or else were given to workers who were more important for fulfilling production plans.97 This conduct on the part of enterprises actually had less to do with conscious discrimination against

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disabled servicemen (although the ex-soldiers obviously saw this differently) than with fulfilling government demands and production targets – it was de facto imposed ‘from above’. Companies were under extreme pressure to produce maximum results for the front or the reconstruction of the country. Disabled employees with impaired health did not fit well into a production system that was oriented towards over-fulfilling norms and whose chaotic, dangerous operations demanded constant improvization. The pressure to meet production targets weighed heavily on companies and the bold postulate of the People’s Commissariat of Public Welfare that it provided ‘all-encompassing care’ did not square with reality.98 To be able to meet production goals, enterprises resisted the expectation that they should also assume the function of welfare bodies. This was not without justification since firms had difficulty integrating hundreds of thousands of disabled servicemen into the production process. It was much easier to use them sporadically as handymen, especially since the state’s labour policy disciplined workers through regular increases in output targets (without corresponding wage increases). Disabled servicemen were in no way exempt from this pressure, but had to compete with non-disabled workers in everyday operations in the enterprise. It no longer mattered that they had suffered their physical impairment in the struggle to defend their motherland. The less that war injuries could be offset by occupational qualifications and medical rehabilitation, the more negatively they affected individuals. Ironically, political leaders paid little attention to this particular social consequence of war. Retraining schemes and also the supply of prosthetic devices thus continued to be totally inadequate in both quantitative and qualitative terms. When the war broke out, the Soviet Union had only 38 factories and workshops manufacturing prosthetic devices and other orthopaedic appliances while wheelchairs were not produced at all.99 Hardly any attention had been given to the development of functional, modern prosthetic devices and the models produced in the 1940s were hopelessly antiquated – they were usually heavy, poorly assembled and did not last long.100 The memoirs of the ex-serviceman Kardin recall how ‘disabled soldiers stood in long queues to get prosthetic devices similar to the wooden legs (dereviashki) once worn by veterans of the Battle of Borodino’ in 1812.101 Although production increased in the postwar years, it was unable to keep pace with increasing demand.102 Delivery times were constantly delayed, raw materials were not supplied in the planned quantities or desired quality and there was a lack of medical specialists and qualified labour in workshops. New, more ‘active’ prosthetic devices (in contrast to ‘cosmetic’ artificial limbs that did not replace or support a bodily function) were only produced in negligible numbers, if at all.103 Hundreds of thousands of disabled servicemen of the ‘Great Patriotic War’ were to remain completely without assistance until far into the 1950s as if prosthetic devices were luxury items that could be dispensed with. State-organized social integration programmes, in particular ones directed at the improvement of disabled servicemen’s mobility, were few and far between; exservicemen essentially had no alternative but to come to terms with their private, social and occupational disability all by themselves.104 Consequently disabled

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veterans not only had to cope with the trauma of lasting physical disfigurement, but also with substantial occupational and social denigration. Even these fragile livelihoods were put into jeopardy after 1945:105 lay-offs of disabled servicemen increased dramatically towards the end of the war and even more so in the course of demobilization, repatriation and return from evacuation, which saw over 20 million people join or rejoin the workforce.106 For the individual disabled veteran becoming unemployed meant far more than a loss of income. Redundancy meant that food-ration cards, [company-owned] accommodation and all other social benefits linked to the workplace also evaporated, making the loss of one’s employment a real existential blow.107 Lay-offs increased markedly in the second half of the 1940s, especially since state organizations did little to counteract this development. In late 1947 welfare offices observed the blatant and large-scale displacement of disabled servicemen from enterprises, disabled persons’ cooperatives and even cottage industries. They were replaced by non-disabled workers, who were now available in great numbers following demobilization.108

Heroes without a voice: how the state hindered a collective identity among disabled veterans The discrepancy between welfarist rhetoric and their own experiences fuelled the resentment of Soviet disabled servicemen about their poor pensions and benefits.109 Many people held great hopes of a better life after Victory Day. They expected material improvements, but also a political breath of fresh air. Former soldiers in particular had gained self-confidence through their experience of war and they did not hide it. After the victory they felt like ‘giants’ in the words of the veteran and writer Kazakevich.110 Stalin distrusted the ex-servicemen precisely because of their increased self-esteem and their ability to compare Soviet life with what they had seen during their wartime stay abroad. He feared their claims to the ‘fruits of victory’. However, collective action or protests did not occur in the first decade after the war. This was partly due to political reasons, as the regime did not tolerate any social organizations other than the Komsomol and the unions, and partly because committees of disabled ex-servicemen threatened to cast a bad light on the provision of public pensions and benefits for war victims. The regime’s almost paranoid fear of ‘unbridled associations’, in particular those of veterans and disabled servicemen, had already led to the banning of all their organizations in 1920. There was therefore no living tradition and no example for the ‘Disabled Soldiers of the Great Patriotic War’ to follow. As a result, there was no organization that could transform the war victims’ grievances into political demands leading to specific social reforms, be it through officially legitimated mediation processes or constant pressure from below. The enforced lack of social policy debate meant that the Soviet public did not perceive the welfare problems of disabled servicemen to be particularly serious. The regime continued to present pensions and benefits for disabled soldiers (which in reality were pathetically inadequate) as an achievement of socialism and to contrast this with the ‘sad fate’

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of disabled people in capitalist countries. The fiction of ‘all-encompassing care’ was thus perpetuated in broad sections of the population long after the war and even after the collapse of the entire Soviet system.111 Since social reality lagged far behind the expectations created by propaganda, disabled servicemen who received this allegedly lavish care remained without a voice and were denied the opportunity to have their own organizations that could have infused them with a sense of common identity. When all veterans’ and disabled soldiers’ associations were disbanded after the October Revolution it was a matter of consolidating Bolshevik rule; in 1945 the preservation of the Stalinist system was the regime’s top priority. The traumatic memories and consequences of the war were not to be dealt with in public. Despite its war weariness, Soviet society was not to succumb to a ‘helpless contemplation of its own wounds’112 but needed to be mobilized, drilled and regimented anew, thus returning to the permanent state of emergency so typical of the 1930s: ‘It soon became clear that the term REconstruction was to be taken literally in social terms as well: the new society was to be the same as before.’113 However it could not be quite the same because the demands made by the ‘Disabled Soldiers of the Great Patriotic War’ on the Soviet state were not denied as those of non-disabled veterans had been in 1947–48, when millions of recipients of decorations were deprived of the material privileges that came along with their honours and medals.114 This latter move made it clear that non-disabled veterans were not to be acknowledged as a new and officially recognized status group in Soviet society. Disabled servicemen, on the other hand, were allowed to retain their material benefits, which were contingent on the state’s recognition of them having lost their ability to work. In this respect the Pension Law of 1940 created a particular group of the population that was to enjoy a range of long-term privileges. This gave rise to expectations that were only fulfilled at the lowest material level and on the whole were deeply disappointed. Some of the full-bodied propagandistic announcements concerning benefits were pure promotion since only pension payments were usually made punctually and smoothly. Being so low, however, these financial payments could not satisfy the hopes of the disabled servicemen. ‘Is this what we fought for?’ was a common expression of exasperation in the post-war years. Frustration and resentment grew since the paltry public benefits were not balanced by additional symbolic recognition in the form of a disabled soldiers’ organization.115

Conclusion The findings presented in this chapter corroborate the critical statements outlined at the beginning of this chapter that the Soviet welfare system was underpinned by coercion and division. Soviet care for disabled soldiers largely followed a divisive and individualistic approach based on meritocratic rather than egalitarian principles. This established a pronounced welfare hierarchy with pension levels based primarily on former employment and salary. Disabled ex-servicemen who were able to obtain work were in a significantly better position than those completely

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unable to work. This highlights the close connection between work and the provision of public benefits and services. Yet even the highest pensions often failed to cover basic needs and many former soldiers with disabilities were condemned to a life in abject poverty. The lack of generosity displayed by the Soviet state towards its former defenders could not be publicly discussed or challenged. Even the fact that pensions for disabled war victims consumed the lion’s share of expenditure on public welfare scarcely figured in state propaganda – presumably to discourage the spread of a ‘welfare mentality’. The retraining of hundreds of thousands of disabled ex-servicemen and the vocational reintegration of further millions was another field where a gulf existed between the Soviet regime’s propagandistic claims and social reality. As impressive as the results may have been in purely quantitative terms, the high level of placements did not reflect the organizational achievements of Soviet welfare bodies, which were completely overwhelmed with the task. They are more indicative of the economic, political and propaganda pressures to work that were exerted over ex-servicemen. At a higher level – in the institutional conflict between public welfare and state pressure on enterprises to fulfil production targets – ‘the Plan’ won over welfare considerations. Disabled veterans who attempted to evade their duty to work and preferred alternative survival strategies soon encountered the regimenting and even punitive sides of the Soviet ‘welfare state’, which brought coercion and terror to bear on poorly integrated ex-servicemen as early as the mid-1930s. War victims caught begging or black-marketeering in large Soviet cities in the early 1950s were transported to remote places in a continuation of inhumane traditions of internal exile. All in all, the discrepancy between the regime’s promises towards the defenders of the motherland and its actual treatment of disabled ex-servicemen could not have been more glaring. The Soviet state miserably failed its injured soldiers in this regard. The much-trumpeted ‘all-encompassing care’ was pure fiction and the ‘sacred duty’ of care nothing but a hollow phrase. Despite being officially recognized as a special group in Soviet society, the disabled servicemen of the Great Patriotic War were in many ways ‘poor victors’.

Notes 1 The author thanks the editorial board of the journal Comparativ for its kind permission to use material from his 2010 article, ‘The Soviet Union’s “Great Patriotic War” Invalids. The Poverty of a New Status Group’, Comparativ. Zeitschrift für Globalgeschichte und vergleichende Gesellschaftsordnung, 20(5): 34–49, and to republish it here in a substantially revised and extended version. 2 A. Nove, ‘Towards a “Communist Welfare State”? Social Welfare in the USSR’, Problems of Communism, 9, 1960(1): 1–10; idem: ‘Is the Soviet Union a Welfare State?’ in T. Riha (ed.) Readings in Russian Civilization, Vol. III, Chicago: Univeristy of Chicago Press, 1964, 745–56. 3 There are, however, several overviews: B. Q. Madison, Social Welfare in the Soviet Union, Stanford, CA: Stanford University Press, 1968; R. J. Osborn, Soviet Social Policies. Welfare, Equality and Community, Homewood, IL: Dorsey Press, 1970; M. Yanowitch, Social and Economic Inequality in the Soviet Union, London: M. E. Sharpe, 1977; A. McAuley,

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7 8 9 10 11

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13 14 15 16

Beate Fieseler Economic Welfare in the Soviet Union. Poverty, Living Standards, and Inequality, Madison: University of Wisconsin Press, 1979; V. George and N. Manning, Socialism, Social Welfare and the Soviet Union, London: Routledge, 1980; V. Zaslavsky, The NeoStalinist State. Class, Ethnicity, and Consensus in Soviet Society, Armonk: Branch Line, 1982; P. Stiller, Sozialpolitik in der UdSSR, 1950–1980. Eine Analyse der quantitativen und qualitativen Zusammenhänge, Baden-Baden: Nomos Verlagsgesellschaft, 1983; H. Herlemann (ed.), Quality of Life in the Soviet Union, Boulder-London: Westview Press, 1987; L. J. Cook, The Soviet Social Contract and Why It Failed. Welfare Policy and Workers’ Politics from Brezhnev to Yeltsin, Cambridge, MA: Harvard University Press, 1993. Much research is still required, particularly regarding the early Soviet Union and the Stalinist period. S. Kotkin, ‘1991 and the Russian Revolution: Sources, Conceptual Categories, Analytical Frameworks’, Journal of Modern History, 70, 1998: 425. In the introduction to his book Magnetic Mountain. Stalinism as a Civilization, Berkeley: University of California Press, 1995, 20, Kotkin states: ‘The amount of benefits, particularly pensions, remained small, but there was no denying the Soviet State had embraced a broad conception of social welfare – […] – and had done so without prodding.’ M. G. Field, ‘Medical Care in the Soviet Union: Promises and Realities’, in H. Herlemann (ed.), Quality of Life in the Soviet Union, Boulder-London: Westview Press, 1987, 65–82; Nuzhda i poryadok: istoriya sotsial’noi raboty v Rossii, XX v. Sbornik nauchnykh statei. Pod red. P. V. Romanova/E. R. Iarskoi-Smirnovoi, Saratov: Nauchnaya Kniga, 2005; Sovetskaya sotsial’naua politika 1920-kh–1930kh godov: ideologiya i povsednevnost’. Sbornik statei. Pod red. P. V. Romanova/E. R. Iarskoi-Smirnovoi, Moscow: Variant, 2007; Sovetskaya sotsial’naya politika. Stseny i deistvuyushchie litsa, 1940–1985. Nauchnaya monografiya. Pod red. E. R. Iarskoi-Smirnovoi/P. V. Romanova, Moscow: Variant, 2008; Sotsial’naya politika v sovremennoi Rossii: Reformy i povsednevnost’. Nauchnaya monografiya. Pod red. P. V. Romanova/E. R. Iarskoi-Smirnovoi, Moscow: Variant, 2008. McAuley, Economic Welfare, 265. George/Manning, Socialism, Social Welfare and the Soviet Union, 49; Zaslavsky, The Neo-Stalinist State, 67, 87. Typically the rural population was excluded from many social services, a situation which lasted for decades. GARF (Gosudarstvennyi Arkhiv Rossiiskoi Federatsii): State Archive of the Russian Federation; RGASPI (Rossiiskii Gosudarstvennyi Arkhiv Sotsial’no-Politicheskoi Istorii): Russian State Archive for Social and Political History. Pravda, 16 June 1942; Pravda, 23 May 1945. For the recognition of all former combatants as one status group and their combination into the category of veterans, see the essay by M. Edele, ‘Veterans and the Welfare State: World War II in the Soviet Context’ in Comparativ. Zeitschrift für Globalgeschichte und vergleichende Gesellschaftsordnung 20(5), 2010: 18–33. Constitution of the RSFSR, adopted at the 5th All-Russian Congress of Soviets on 10 July 1918, in H. Altrichter (ed.), Die Sowjetunion. Von der Oktoberrevolution bis zu Stalins Tod, Vol. 1: Staat und Partei. Dokumente, Munich: Deutscher TaschenbuchVerlag, 1986, 147. Sotsial’noe obespechenie v Sovetskoi Rossii. Sbornik statei k s’’ezdu Sovetov. Pod red. A. Vinokurova, Moscow: Gosudarstvennoe izdatel’stvo, 1919, 5. In all other cases the family had to pay: McAuley, Economic Welfare, 267. The USSR Constitution of 1936 (as amended in 1941) in Altrichter (ed.) Die Sowjetunion, Vol. 1, 287. Stalin’s speech to the 8th Congress of Soviets on 25 November 1936: ibid., 265. Invalidam Otechestvennoi voiny zabota vsego naroda, in Pravda, 16 June 1942. After the German capitulation in May 1945, the Soviet foreign minister, Vyacheslav

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Molotov, was quoted in Pravda with the words: ‘We will wholeheartedly fulfil our great duty towards the disabled veterans’: Pravda, 23 May 1945. It was not clear whom exactly he meant by ‘we’. Pravda, 14 September 1942; Pravda, 23 May 1945. Pravda, 23 May 1945. The development of pensions and benefits for war victims in the Russian Empire has yet to be studied systematically, but see E. Pyle, Village Social Relations and the Reception of Soldiers’ Family Aid Policies in Russia, 1912–1921, Ph.D. dissertation, University of Chicago, Illinois, 1997. Pensii soldatam, ikh vdovam i sirotam. Zakon 25 iyunia 1912 s izdannymi v dopolnenie ego instruktsiyami i raz’yasneniyami Pravitel’stvuyushchego Senata, Petrograd 1915. Two days earlier, on 23 June 1912, the Tsar endorsed the draft laws on workers’ health and accident insurance. In practice, however, they only applied to about 20 per cent of workers: V. L. Stepanov, ‘Die Sozialgesetzgebung Otto von Bismarcks und die russischen Arbeiterversicherungsgesetze’ in D. Beyrau, I.Cˇicˇurov und M. Stolleis (eds), Reformen im Rußland des 19. und 20. Jahrhunderts. Westliche Modelle und russische Erfahrungen, Frankfurt a.M.: Vittorio Klostermann, 1996, 109–38. For the precursors of the law, see J. von Puttkamer, ‘Anfänge russischer Sozialgesetzgebung. Die Politik der Regierung und die Haltung der Industrie zur Haftung bei Arbeitsunfällen’, in H. Haumann und S. Plaggenborg (eds) Aufbruch der Gesellschaft im verordneten Staat, Frankfurt a.M.: P. Lang, 1994, 186–216. Kak russkomu soldatu i ego sem’e poluchit’ pensiyu i posobie, Moscow: Government of Tsar Nicholas II, 1915, 17. D. N. Borodin, Invalidnyj dom grafov Zubovykh, Moscow: M. Vilenchik, 1915, 5–6; see also: I. I. Charnomskaya, K voprosu o trudovoi pomoshchi uvechnym voinam, St Petersburg: unknown publisher, 1915, 9–10. E. Pyle, Village Social Relations, 6. Soveshchanie pri Ministerstve gosudarstvennago prizreniya po voprosam pomoshchi voenno-uvechnym, 4 June 1917: GARF 6787/1/37, sheet 37; speech by the Minister of Public Welfare, Prince D. I. Shakhovskoi, at the 1st All-Russian Delegates’ Meeting of Wounded Soldiers, Petrograd, 15 June 1917: GARF 6787/1/28, sheet 10. O zadachakh Ministerstva gosudarstvennago prizreniya v oblasti okazaniya pomoshchi voennouvechnym. Doklad d-ra G. F. Melenevskago, 1917: GARF 6787/1/30, sheet 39. Letter of the Minister of Public Welfare to various ministries requesting that all suitable positions be filled with disabled servicemen, 7 September 1917: GARF 6787/1/30, sheets 81–82; circular of the Ministry of Agriculture on the allocation of workplaces to disabled servicemen, 19 September 1917: GARF 6787/1/35, sheet 5; Zasedanie soveshchaniya po voprosu o trudovoi pomoshchi voenno-uvechnym so storony rabotodatelei i soyuzov rabotodatelei, 22 September 1917, 29 September 1917, 6 October 1917: GARF 6787/1/38a, sheets 1–6, 10–11. Constitution of the RSFSR, adopted by the 5th All-Russian Congress of Soviets on 10 July 1918, in H. Altrichter (ed.), Die Sowjetunion. Von der Oktoberrevolution bis zu Stalins Tod, Vol. 1: Staat und Partei, Dokumente, Munich: Deutscher TaschenbuchVerlag, 1986, 147. Sotsial’noe obespechenie v Sovetskoi Rossii. Sbornik statei k s’’ezdu Sovetov. Pod red. A. Vinokurova, Moscow: Gos. Izdatel’stvo, 1919, 5. Letter from Trotsky to the Narkomsobes and the Vserokompom, 17 January 1922: RGVA 4/4/207, sheets 71–72; letter of the Narkomsobes to Trotsky, 25 January 1922: RGVA 4/4/207, sheets 79–80; Postanovlenie Narkomsobesa No. 115, 4 December 1924: GARF 4347/1/219, sheet 9. S. Ewing, ‘The Science and Politics of Soviet Insurance Medicine’, in S. Gross Solomon and J. F. Hutchinson (eds) Health and Society in Revolutionary Russia, Bloomington-Indianapolis: Indiana University Press, 1990, 282–286. GARF 1235/72/1404, sheets 54–55.

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Beate Fieseler RGASPI 17/84/831, sheet 17. RGASPI 17/84/831, sheets 8, 16; RGASPI 17/85/144, sheet 106. GARF 4347/1/607, sheets 59, 63. For example, see the poster ‘Don’t leave the Red Hero empty-handed, buy specialissue stamps!’ (around 1920), in M. Lafont, Soviet Posters. The Sergo Grigorian Collection, Munich: Prestel Publishing, 2007, 49. GARF 4347/1/607, sheet 60. GARF 1235/76/121, sheet 7. Stalin, I. V.: Sochineniya, t. 14, Moscow: Pisatel’, 1997, 85. N. Moine ‘Passeportisation, statistique des migrations et contrôle de l’identité sociale’, in Cahiers du Monde russe, 38, 1997, 587–600; G. Kessler ‘The Passport System and State Control over Population Flows in the Soviet Union, 1932–1940,’ Cahiers du Monde russe, 42, 2001, 477–504; D. Shearer, ‘Elements Near and Alien: Passportization, Policing, and Identity in the Stalinist State, 1932–1952,’ Journal of Modern History 76, 2004, 835–81. D. Shearer, ‘Social Disorder, Mass Repression and the NKVD during the 1930s’ in B. McLoughlin and K. McDermott (eds) Stalin’s Terror. High Politics and Mass Repression in the Soviet Union, Houndmills-Basingstoke: Palgrave Macmillan, 2003, 95–96. D. Shearer, ‘Crime and Social Disorder in Stalin’s Russia. A Reassessment of the Great Retreat and the Origins of Mass Repression’, Cahiers du Monde russe, 39, 1998, 1/2, 139, 143; D. Shearer, ‘Social Disorder, Mass Repression, and the NKVD during the 1930s’, Cahiers du Monde russe, 42, 2001, 526, 528, 534. The following books provide a good overview of the various campaigns for the ‘social defence’ (sotsial’naya zashchita) of the Soviet state: D. Shearer, Policing Stalin’s Socialism. Repression and Social Order in the Soviet Union, 1924–1953. New Haven: Yale University Press, 2009, 181–218; P. Hagenloh: Stalin’s Police. Public Order and Mass Repression in the USSR, 1926–1941, Baltimore: John Hopkins University Press, 2009, 89–195. These studies contribute to understanding the prosecution of criminals and social deviants in the years of the Great Terror, 1937/38, as ‘social engineering’: R. Binner/M. Junge ‘Vom “sozial nahen” zum “sozial feindlichen Element”. Kriminelle in der sowjetischen Gesellschaft 1918–1938’, in R. Binner, B. Bonwetsch and M. Junge (eds) Stalinismus in der sowjetischen Provinz 1937–1938. Die Massenaktion aufgrund des operativen Befehls No. 00447, Berlin: Oldenbourg Akademieverlag, 2010, 161–216; V. Ivanov, ‘Die Kriminellen als Zielgruppe im Gebiet Leningrad’, in ibid., 217–233. Binner/Junge: Vom ‘sozial nahen’ zum ‘sozial feindlichen Element’, 215. S. Yekelchyk, ‘The Making of a “Proletarian Capital”: Patterns of Stalinist Social Policy in Kiev in the mid-1930s’, Europe-Asia Studies 50, 1998, 1236; L. Rimmel, ‘A Microcosm of Terror, or Class Warfare in Leningrad: The March 1935 Exile of “Alien Elements”’, Jahrbücher für Geschichte Osteuropas 48, 2000, 531–32. P. Hagenloh, ‘Socially Harmful Elements and the Great Terror’ in Fitzpatrick, Sheila (ed.) Stalinism. New Directions, London-New York: Routledge, 2000, 288–90, 294; G. Rittersporn, ‘Extra-Judicial Repression and the Courts: Their Relationship in the 1930s’ in P. Solomon (ed.) Reforming Justice in Russia, 1864–1996. Power, Culture, and the Limits of Legal Order, New York: M. E. Sharpe, 1997, 208–12. R. Binner und M. Junge, ‘Wie der Terror “groß” wurde: Massenmord und Lagerhaft nach Befehl 00447’, Cahiers du Monde russe, 42, 2001, 2/3/4, 557–614; idem: ‘“S . etoj publikoj ceremonit’sja ne sleduet”. Die Zielgruppen des Befehls Nr. 00447 und der Große Terror aus der Sicht des Befehls Nr. 00447’, Cahiers du Monde russe, 43, 2002, 1, 181–228. B. McLoughlin, ‘Mass Operations of the NKVD, 1937–8: A Survey’ in McLoughlin/ McDermott, Stalin’s Terror, 136. There is no information about the proportion of the

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victims of the Great Terror who were unemployed and/or homeless ex-servicemen with disabilities. Published 1932–34, German edition 1947. H. Günther, ‘Das Tauwetter als Prozeß der Entkanonisierung’ in D. Beyrau and I. Bock (eds), Das Tauwetter und die Folgen. Kultur und Politik in Osteuropa nach 1956, Bremen: Temmen, 1988, 149. In letters and speeches, disabled soldiers of the ‘Great Patriotic War’ sometimes referred to the story of Pavel Korchagin whom they tried to emulate, see for example: GARF 9541/1/3, sheets 95–97. Trudovoe ustroistvo invalidov v SSSR. Sbornik normativnykh aktov i metodicheskikh materialov, Moscow 1963, 56; S. M. Schwarz, Arbeiterklasse und Arbeitspolitik in der Sowjetunio, Cologne: Bund Verlag, 1953, 33. Ibid., 56. Ibid., 52–53. G. F. Krivosheev, Soviet Casualties and Combat Losses in the Twentieth Century, London: Greenhill Books, 1997, 92; C. Merridale and Iwans Krieg: Die Rote Armee 1939–1945, Frankfurt: Fischer Taschenbuch Verlag, 2006, 395. A. Ia. Averbakh/M. V. Shirokova (eds) Spravochnik po vrachebno-trudovoi ekspertize invalidov otechestvennoi voiny, Moscow: Medgiz, 1943, 14; see also: A. Ia. Averbakh, ‘Sostoyanie vrachebno-trudovoi kspertizy v RSFSR i eë ocherednye zadachi’, in N. M. Obodan (ed.) Vozvrashchenie k trudovoi deiatel’nosti invalidov, Leningrad: Gaz-zhurn. i kn. izdatel’stvo, 1945, 24, who even adduced the following example of full fitness for employment: an accounts clerk, blind in one eye, with fingers 3–5 of the right hand missing and his left lower leg amputated. O rezul’tatakh proverki raboty organov sotsial’nogo obespecheniya po obsluzhivaniyu invalidov Otechestvennoi voiny, April 1943: GARF 5446/44/976, sheet 118; sheet 220ff; letter of the head of the Organisational-Instructional Section of the Central Committee of the VKP(b), Slepov, to the Secretary of the Central Committee, Malenkov, 1945: RGASPI 17/88/604, sheet 2; O sostoianii trudovogo ustroistva invalidov Otechestvennoi voiny na 1. 10. 1949: GARF 5451/29/330, sheets 19–22. Postanovlenie SNK RSFSR, 19 March 1935: ‘O normakh pensii invalidov voiny i semei lits, pogibshikh na voine’, in Material’noe obespechenie, 176–77; Postanovlenie TsIK i SNK SSSR No. 86/162, 31 January 1937: ‘O povyshenii razmerov pensii invalidam grazhdanskoi voiny i voennoi sluzhby v ryadakh RKKA, byvshim Krasnogvardeitsam i Krasnym partizanam, a takzhe chlenam seme tikh lits’, in Sobranie Zakonov SSSR 9, (1937), No. 30. According to this decision, former Red Guards and Red Partisans of all disability categories were paid a 25 per cent allowance on top of the abovementioned pensions and were entitled to a higher ‘personal pension’ providing they had gained ‘particular merit’: ibid. Corresponding requests were received by Voroshilov and others, see e.g. the letter of Disabled Serviceman of the Civil War, 2nd category, T. F. Agarkov of 25 January 1948: GARF 5446/54/58, sheets 54–55. Postanovlenie SNK SSSR No. 1269, 16 July 1940: ‘O pensiyakh voennosluzhashchim ryadovogo i mladshego nachal’stvuyushchego sostava srochnoi sluzhby i ikh sem’yam’, in Sobranie Postanovlenii SSSR, 19 (1940), No. 465. Ibid. Postanovlenie SNK SSSR No. 2291, 12 November 1940, in Sobranie Postanovlenii SSSR, 30 (1940), 729. The original decision of 16 July 1940 did not anticipate any deductions for persons on a wage-related pension who were engaged in agriculture. However, a supplementary decision of the Central SNK of 12 November 1940 cut the pensions of this group by 20 per cent: Postanovlenie SNK SSSR No. 2291, 12 November 1940: ‘O dopolnenii postanovleniya Sovnarkoma SSSR ot 16 iyulya 1940’, in Sobranie Postanovlenii SSSR, 30 (1940), 729.

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61 Postanovlenie SNK SSSR No. 231, 28 January 1946: ‘O povyshenii razmera pensii invalidam Otechestvennoi voiny 1-oi gruppy’, in Sobranie Postanovlenii SSSR, 3 (1946), No. 35. 62 It was not until the late 1950s that minimal standards of well-being began to be stipulated and ‘minimum budgets’ were published, which amounted to an official Soviet definition of poverty: A. McAuley, Economic Welfare in the Soviet Union. Poverty, Living Sandards, and Inequality, Madison: Allen & Unwin, 1979, 79; M. Matthews, ‘Aspects of Poverty in the Soviet Union’, in H. Herlemann (ed.) Quality of Life in the Soviet Union, Boulder-London: Westview Press, 1987, 43–44. Therefore there is no official information on the actual subsistence level in 1946. But we can compare pensions and wages in 1946: while the average monthly wage across all industries was 626 roubles, there were branches with considerably lower wages, e.g. the construction sector or textile industries, where monthly wages only reached 300–500 roubles. These incomes were considered very low and led to massive poverty: D. Filtzer, Soviet Workers and Late Stalinism. Labour and the Restoration of the Stalinist System after World War II, Cambridge-New York: Cambridge University Press, 2002, 235–37. The pensions for disabled servicemen were far below even these poor wages. For a discussion of the relationship between the cost of living index (Moscow) and the real wages of workers and employees, see D. Filtzer, ‘The Standard of Living of Soviet Industrial Workers in the Immediate Postwar Period, 1945–1948,’ Europe-Asia Studies, 51, 1999: 1015–18. 63 Sobranie Postanovlenii SSSR, 19 (1940), No. 465, point 7. 64 M. Edele, Soviet Veterans of the Second World War. A Popular Movement in an Authoritarian Society, 1941–1991, Oxford: Oxford University Press, 2008, 86; the other privileges were then also constantly extended. 65 For the manifold peculiarities of this subculture of disabled sevicemen and other marginal social groups in the postwar years in Leningrad, see the autobiographical stories by E. Kotschergin, Die Engelspuppe, Mannheim: Persona Verlag, 2009 (Russian edition: Kochergin, E.: Angelova kukla, St Petersburg: Izdatel’stvo Ivana Limbakha, 2003, 2nd edition 2006). 66 E. Zubkova, ‘S protianutoi rukoi: Nishchie i nishchenstvo v poslevoennom SSSR’, Cahiers du Monde russe, 49, 2008, 441–74. 67 RGANI 5/30/78, sheet 41. 68 See the webpage ‘Mify ob internate dlya invalidov VOV na ostrove Valaam’ on the website ‘poltora_bobra’: http://poltora-bobra.livejournal.com/72746.html, last accessed on 10 December 2010. 69 For more details on this topic, see B. Fieseler, ‘“La protection social totale”: Les hospices pour grands mutilés de guerre dans l’Union soviétique des années 1940’, Cahiers du Monde russe, 49, 2008, 419–40. 70 For this topic, see the paper by Edele, Veterans and the Welfare State (note 17). 71 Petition of Engineer Captain Svetaev: GARF 5446/48/3245, sheet 165. 72 The pension payments placed a huge financial burden on the Soviet state but the payment procedure itself did not present any particular difficulties. However, specific aspects of care for disabled servicemen such as vocational reintegration, retraining and the supply of prosthetic devices were often highly inadequate – when they were provided at all. 73 According to figures of the Minister of State Control, 95 per cent of the budget of the Ministry of Public Welfare in 1947 was spent on pension payments but only 5 per cent on disabled persons’ homes, vocational boarding schools, sanatoriums, prosthetic devices etc.: letter of the Minister of State Control, Vasiliev, to the Secretary of the Central Committee, Malenkov, 16 December 1948: RGASPI 17/121/680, sheet 160. 74 For the organisation of ‘Disabled Soldiers’ Sundays’ and ‘Disabled Soldiers’ Aid Months’ by Party bodies, wounded soldier aid committees, village communities etc., see RGASPI 17/122/145, sheet 36; 17/122/157, sheets 81–82; 17/88/470, sheets

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75

76

77 78 79 80

81 82

83

84 85 86

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77–83; 603/1/8, sheets 192–94; 603/1/13, sheet 80; W. Eggeling, Das Sowjetische Informationsbüro. Innenansichten einer sowjetischen Propagandainstitution, 1945– 47, in Osteuropa, 50 (2000), 1, 210. Similar activities were also organised by the Red Cross: GARF 9501/2/869, sheets 83–90; 9501/2/1187, sheets 54–65; 9501/2/1195, sheets 10–19. The Orthodox Church also supported widows, orphans and disabled soldiers during the war: M. A. Vyltsan, ‘Prikaz i propoved’: Sposoby mobilizatsii resursov derevni v gody voiny’, Otechestvennaya istoriya, 3 (1995): 69–80. For aid campaigns of the Jewish communities, see G. Kostyrchenko (Intro.): From a Report Concerning the Jewish Religion in the USSR in 1946, Jews and Jewish Topics in the Soviet Union and Eastern Europe, 1992, 19(3): 40; F. Grüner, ‘Jüdischer Glaube im Sowjetstaat. Zur Lage der jüdischen Religion in der Sowjetunion in den Kriegs- und Nachkriegsjahren’, Glaube in der 2. Welt, 2002, 30(4): 13–19; K. Boeckh, ‘Fallstudie: Lemberg in Galizien. Jüdisches Gemeindeleben in der Ukraine zwischen 1945 und 1953,’ Glaube in der 2. Welt, 2002, 30(4): 24. ‘Top-secret’ report of the Deputy Minister of the Interior of the USSR, I. Serov, 14 June 1947 to I. V. Stalin, V. M. Molotov and A. A. Zhdanov: GARF 9401/2/170, sheets 65–69 as well as Serov’s ‘top secret’ report of 21 June 1947 to Stalin, Molotov, Zhdanov and L. P. Beriya: ibid., sheets 77–79; report of the Prosecutor General: GARF 8131/37/3874, sheets 60–61. For the phenomen of imposture in Russia in general and in the Stalin period in particular, see S. Fitzpatrick, ‘Making a Self for the Times: Impersonation and Imposture in Twentieth-Century Russia’, Kritika, 2002, 2(3): 469–87; idem, ‘The World of Ostap Bender: Soviet Confidence Men in the Stalin Period,’ Slavic Review, 2002, 61(3): 535–57. RGASPI 17/131/36, sheet 15. This figure may be greatly exaggerated like much of the Narkomsobes data, especially when one bears in mind that Sukhov stated for the war years alone: ‘Over 173,000 disabled servicemen have learned a new occupation’: Itogi raboty organov sotsial’nogo obespecheniya za gody Velikoi Otechestvennoi voiny, 30 May 1946: GARF (filial’) A-413/1/753, sheet 6. RGASPI 17/131/36, sheet 10. Ibid., sheet 10. This stratum made up an average of 6.5 per cent in the kolkhozes of the RSFSR: O. M. Verbitskaya, Izmeneniya chislennosti i sostava kolkhoznogo krest’ianstva RSFSR v pervye poslevoennye gody (1946–1950), in: Istoriya SSSR 5 (1980), 137. In the early 1950s, peasants’ average income (in money and kind) still lay 39 per cent below that of industrial workers: M. A. Beznin and T. M. Dimoni, ‘Sotsial’nyi protest kolkhoznogo krest’yanstva (vtoraya polovina 1940-kh–1960-e gg.)’, Otechestvennaya istoriya, 3, 1999, 89. I. Kruchinin, Trudovoe i bytovoe ustroistva pensionerov v RSFSR: GARF (filial’) A-413/1/1380, sheet 18. This is according to Nesterova, head of the Public Welfare Section of Moscow’s Krasnogvardeiskii District, at a meeting of the Moscow staff of the Narkomsobes, April 1943: GARF 5446/44/976, sheet 131. The Narkomgoskon established, however, that in the Sverdlovsk region and in Moscow, at least, the overwhelming majority of the disabled servicemen employed in industry had found work independently: GARF (filial’) A-339/1/1800, sheets 105, 125. RGASPI 17/122/100, sheet 93: The applicants were stopped by the plant managers and not even allowed into the factory: Saratov, October 1942. Three years later the situation there had still not improved: 17/122/101, sheet 146; 17/122/100, sheet 150. Letter from Grishakova to the Central Committee of 11 October 1942: RGASPI 17/122/21, sheets 76–77. Stenograph of the meeting of Moscow public welfare staff, April 1943: GARF 5446/44/976, sheet 128; GARF (filial’) A-413/1/359, sheet 26. GARF 5446/44/976, sheet 133. RGASPI 17/122/100, sheet 60.

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87 Letter of the People’s Commissar of State Security, Merkulov, to the Secretary of the Central Committee, Malenkov, 5 May 1945: RGASPI 17/121/425, sheet 28. It gives further examples of unfounded rejections of disabled servicemen as workers. 88 For example, 25 per cent of Leningrad disabled servicemen had only one arm (or only one that was fully functional). A commission therefore examined which industrial occupations they were still able to work in: Dokladnaya zapiska, ‘O rasshirenii sfery primeneniya truda invalidov na proizvodstve’, 14 March 1947: GARF 5451/29/242, sheet 212. 89 GARF 5451/29/128, sheet 4. 90 A. N. Sukhov, Ocherednye zadachi organov sotsial’nogo obespecheniya v oblasti trudovogo ustroistva invalidov. Doklad. In: Ocherednye zadachi organov sotsial’nogo obespecheniya. Materialy Vserossiiskogo soveshchaniya rukovodyashchikh rabotnikov sotsial’nogo obespecheniya (mai 1945 goda), Moscow: Izdatel’stvo Narkomsobesa RSFSR, 1945, 18. 91 Ibid., 18; Sukhov, Zadachi sotsial’nogo obespecheniya, 1946: GARF (filial’) A-413/1/753, sheet 27. 92 Ibid., sheet 26: Sukhov spoke in this context of a ‘considerable percentage’. Reconstruction required mainly workers able to do heavy physical work: M. Hildermeier, Geschichte der Sowjetunion 1917–1991. Entstehung und Niedergang des ersten sozialistischen Staates, Munich: C. H. Beck, 1998, 704. 93 RGASPI 17/122/100, sheets 173–174: Kurgan region, January 1945. In some factories of the Gorkii region in early 1945, according to Narkomsobes figures, 60–80 per cent of the disabled servicemen were in unqualified posts: GARF 8131/22/221. A SNK decision of 10 July 1945 prohibiting the employment of qualified disabled servicemen as watchmen and janitors was passed on from the trade unions to the enterprises: letter of the head of the trade unions’ social-security section to the factory committees: GARF 5451/29/242, sheets 159–61. The Head of the People’s Commissariat of Tank Construction also reacted and ordered that they be relocated to qualified positions: Order No. 552, 24 August 1945: GARF 8131/22/103, sheet 86. 94 RGASPI 17/122/100, sheet 195: Rostov region, January 1945; sheet 138: Voronezh region, May 1944. Here not even all the available money for appropriate retraining schemes was spent; RGASPI 17/122/100, sheet 113: Novosibirsk region, January 1945; sheet 150: Kirov region, January 1945. 95 RGASPI 17/122/100, sheet 113: Novosibirsk region, January 1945; sheet 150: Kirov region, early 1945; sheet 71: Kuibyshev region, January 1945. 96 RGASPI 17/121/299, sheet 66; 17/122/100, sheets 7, 60, 97, 114, 127, 130, 151, 228; GARF 5446/44/976, sheet 148. 97 RGASPI 17/122/21, sheet 86: October 1942; 603/1/13, sheets 148–49, Novosibirsk 1943. Naturally the lion’s share of goods for distribution within the enterprises went to the management and the technical specialists, and corruption was widespread. Workers as a social group were fundamentally disadvantaged in this arbitrary distribution system: D. Filtzer, Soviet Workers and Late Stalinism. Labour and the Restoration of the Stalinist System after World War II, Cambridge: Cambridge University Press, 2002, 70, 73. 98 I. V. Padezhnov: Zadachi pensionnogo i material’no-bytovogo obsluzhivaniya invalidov, in: Ocherednye zadachi organov sotsial’nogo obespecheniya. Materialy Vserossiiskogo soveshchaniya rukovodyashchikh rabotnikov sotsial’nogo obespecheniya (mai 1945 goda), Moscow: Izdatel’stvo Narkomsobesa RSFSR 1945, 28. 99 RGASPI 603/1/3, sheet 4. 100 GARF 5446/48/3246, sheets 3–1. 101 V. Kardin ‘Luchshie gody nashei zhizni, ili pochemu ya ravnodushen k antiutopiyam’, in Ogonek, 1990, 19, 17. 102 The historian Margarita Zinich comes to the conclusion: ‘Unfortunately the Soviet prosthetics industry is underdeveloped even today [i.e. in the period shortly before

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103 104 105 106 107

108

109 110 111

112 113 114 115

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the collapse of the Soviet Union]’: Budni voennogo likholet’ia 1941–1945, Moscow: Russkaya Press-Sluzhba, 1994, 34. The interviews carried out by Dr Vladimir Bessonov with disabled servicemen in the 1980s are full of complaints about the poor quality of prosthetic devices: Voina vsegda so mnoi, Moscow 1988, 27, 30, 71, 89, 90, 94, 102. GARF 5451/29/130, sheet 73; GARF (RSFSR) A-413/1/1425, sheet 48. For more on this topic, see the article by B. Fieseler, ‘Stimmen aus dem gesellschaftlichen Abseits. Die sowjetrussischen Kriegsinvaliden im “Tauwetter” der fünfziger Jahre,’ Osteuropa, 2002, 52, 955–60. RGASPI 17/122/21, sheet 76. M. Hildermeier, Geschichte der Sowjetunion, 702–03. Report by the head of the Social-Security Section of the Central Coucil of Trade Unions, Gorbunov, and the head of the Section for Reintegration into Working Life and Care for Disabled Servicemen, Bezuglii, to trade union secretary L. N. Soloviev, 1946/47: GARF 5451/29/242, sheets 1–4. From the account of the Deputy Minister of Public Welfare, Nyrkov, at a meeting of the Disabled Persons’ Cooperative Insurance Funds, 26 November 1947: GARF (filial’) A-413/1/904, sheets 19–21. In Yaroslavl the wave of lay-offs of disabled servicemen lasted until 1950: ‘O vypolnenii profsoiuznymi organizatsiyami Yaroslavskoi oblasti i Yaroslavskim otdelom sotsial’nogo obespecheniya Postanovleniya Sekretariata VTsSPS ot 10 fevralia 1950 g. “Ob obsluzhivanii invalidov voiny, truda, i semei poteriavshikh kormil’tsev”, Ministerstvom Sotsial’nogo Obespecheniya RSFSR’: GARF 5451/29/397, sheet 112. For the situation of disabled servicemen in the Ukraine, see K. Boeckh, Stalinismus in der Ukraine. Die Rekonstruktion des sowjetischen Systems nach dem Zweiten Weltkrieg , Wiesbaden: Harrassowitz Verlag, 2007, 120–22. . E. Kazakevich, Slushaya vremya. Dnevniki, zapisnye knizhki, pis’ma, Moscow: Sovetskii pisatel’, 1990, 316; see also V. Kondrat’ev, Paradoks frontovoi nostal’gii, in Literaturnaya Gazeta, 9 May 1990, 9. E. Iarskaia-Smirnova and P. Romanov, ‘At the Margins of Memory. Provincial Identity and Soviet Power in Oral Histories, 1940–1953’, in D. J. Raleigh (ed.), Provincial Landscapes. Local Dimensions of Soviet Power, 1917–1953, Pittsburgh: University of Pittsburgh Press, 2001, 308. I. Deutscher, Stalin. Eine politische Biographie, Reinbek b. Hamburg: Rowohlt, 1992, 726. M. Hildermeier, Geschichte der Sowjetunion, 701. M. Edele, Soviet Veterans of the Second World War. A Popular Movement in an Authoritarian Society, 1941–1991, Oxford-New York: Oxford University Press, 2008, 191–92. This disappointment was expressed in a surge of petitions and letters of complaint to all conceivable official bodies, Party and government officials, magazine editorial boards and army commissariats. See the author’s professorial dissertation, ‘“Die Invaliden des Großen Vaterländischen Krieges” – Eine politische Sozialgeschichte 1941– 1991’, Ruhr-Universität Bochum, 2003; for the persistence of similar expressions of irritation until into the 1950s see B. Fieseler, ‘Stimmen aus dem gesellschaftlichen Abseits. Die sowjetrussischen Kriegsinvaliden im “Tauwetter” der fünfziger Jahre’, Osteuropa, 2002, 52(7): 945–62. On the function of complaints by disabled soldiers of the ‘Great Patriotic War’ and related issues, see also E. Chueva, ‘“Mir posle voiny”: zhaloby kak instrument regulirovaniya otnoshenii mezhdu gosudarstvom i invalidom Velikoi Otechestvennoi voiny’, in Sovetskaya sotsial’naya politika: stseny i deistvuyushchie litsa, 1940–1985. Nauchnaya monografiya. Pod red. E. R. IarskoiSmirnovoi/P. V. Romanova, Moscow: Variant, 2008, 96–120.

3

Prosthetic promise and Potemkin limbs in lateStalinist Russia Frances Bernstein

In June 1948, after several months of closed deliberations, the Stalin Prize committee announced its 1947 laureates in the fields of science, medicine, and technology. Among the eminent engineers, scientists, and physicians recognized for their achievements, one name on the list in particular stands out due to the inventor’s very different set of credentials: Viktor E. Kononov, a one-armed, uneducated, blue-collar worker. Kononov’s creation, a mechanical arm for amputees, was widely promoted during the war and postwar years, and heralded as of similar strategic importance as another of that year’s prize winners, the Tupolev medium-range bomber (Tu-2).1 Why “Kononov’s arm” (ruka Kononova) achieved this status, and the cultural and political significance of the device, are the subject of this chapter.2 The prosthetic offered an ideal opportunity to counter the vast material, psychological, and symbolic damages wrought by the war on the bodies of the country’s disabled soldiers. The “re-arming” of war veterans mattered deeply to the state. The reemployment of this population, preferably in industry, was vital to rebuilding the country’s devastated economy.3 It would also ease some of the state’s colossal financial burden of pension provisions. Functional and inexpensive, easy to put on and take off without assistance, the prosthesis was also judged the most life-like of any active device available, a factor deemed especially valuable for mending wounded psyches. Quite literally a self-made man, Kononov demonstrated the possibilities and opportunities to which anyone using an artificial limb could aspire (Figure 3.1). Both in design and in application, the Kononov arm was presented as a masculine object and assumed a male recipient (Figure 3.2). Disability was associated with the threat of feminization, so rehabilitation necessitated a reassertion of the traditional gender roles and hierarchies on which the nation’s recovery appeared to rely. As with representations of the Red Army more generally, the veterans that Kononov’s limb promised to help were inevitably men, even though a substantial number of women fought during the war and sustained the same debilitating injuries.4 Ultimately, a device that promised so much delivered very little, and the arm’s potential was never realized. Most significantly, this “technological marvel” was a technological failure: comprised of defective parts made from substandard materials, fitted poorly and assembled incorrectly, the arm was rejected by the

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Figure 3.1 Viktor Kononov at his workbench using his prosthetic device.

war amputees for whom it was intended or used by them purely cosmetically. That such a fate befell an object receiving so much support allows us to draw broader conclusions about the quality of other prostheses and the defects of the industry as a whole. The history of post-war prosthetics encapsulates the larger story of technology in the Soviet Union: from enthusiasm about its transformative power, through technological quick-fixes, to systemic failure. Our focus on Kononov’s prize-winning arm will allow us to consider more generally the government’s inability to meet the needs of the war disabled, at such a tremendous cost to the state. It is next to impossible to calculate accurately the number of Soviet soldiers permanently disabled as a result of their war service. Due to the difficulties in

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Figure 3.2 The Kononov arm’s intended male recipient.

establishing disability classifications and the reluctance of the state to do so, the actual figure would have been substantially higher than the official estimation of 2.75 million, with 85 percent of all injuries to the extremities.5 According to statistics compiled by the Ministry of Social Welfare,6 the state agency administering artificial limb production, about 600,000 prosthetic devices were issued between 1941 and the first five months of 1945; as of January 1, 1945, 70,000 people were waiting for prostheses. This number increased many-fold in the postwar period.7 Yet whereas injuries to the upper extremities predominated over the lower extremities, substantially (three to four times) more lower limb prostheses were produced and distributed.8 In part this was due to the fact that there were more injuries to left arms than to right, and many amputees could and did get along without their left arm if the dominant one remained intact. Moreover, the significantly wider range of movement of which the arm is capable made it much more difficult to produce a satisfactory replacement.9 Thus the development of active arm prostheses, allowing wearers to care for themselves and to return to work, was identified by the state as a priority for the prosthetics industry early in the war.10

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Revolutionary hands The hand served as a key visual symbol of the Communist state from the very first days of the Soviet era. In a country where much of the (overwhelmingly peasant) population was illiterate or only semi-literate, the use of visual propaganda was crucial for political education, serving as a short-hand primer to instill Bolshevik values and behaviors.11 The Revolution’s definitive iconographic figure was the proletarian, usually a heavy metal worker, his hammer raised to forge socialism as it smashed those enemies who would destroy it. In the Civil War years (1918–21) he was frequently paired with a Red Army soldier, whose raised arm held a bayonet or rifle. During the New Economic Policy (1921–27), which allowed for the partial return of a market economy and the temptations accompanying it, a larger-than-life hand might snatch a worker away from a bottle of vodka or a rendezvous with a suspect woman. The violence with which the Soviet symbolic hand was often associated became explicit as the state forcibly collectivized agriculture in the late 1920s (Figure 3.3). Wealthy peasants, and indeed any who resisted, were labeled “kulaki’’ (fists)—a very different kind of hand—and in a pervasive slogan all loyal citizens assisting in this brutal campaign were exhorted to “beat the kulak with a fist.” As a potent symbol of and support for the state’s agenda in the 1930s, the mighty Soviet hand enthusiastically industrialized and voted in favor of the Five Year Plans and the Stalin Constitution (Figure 3.4). It crushed or strangled both

KVrtfiKM C O M m I J B t B C * ' ' i VM L bmUI J B t B C1* a> KCA V rHt b f ilC K Mr W CO '' - I KM f a U C n /lQ ftlA TO P b 1

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Figure 3.3 Rid the collective farm of the kulak, poster from 1920. Available through the London School of Economics Digital Library, archive reference COLL MISC 0660/2/1, at http://digital.library.lse.ac.uk/objects/lse:xef997lep, accessed 25 June 2013.

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Frances Bernstein

\ \ *? *? *?\ * n*?\ fP\ *? *?\

\ \ *? *? *?\$ \ \*? *?\*? *?\ Figure 3.4 Let’s fulfil the plan of great works, poster from 1930 by G.G. Klutis. Available through the online archive of “The reality of utopia: 20th Century Poster Art” collection at http://www.russianposter.ru/images/0/12-24.jpg, accessed 25 June 2013.

internal and external threats, as well as those enemies who straddled this divide (such as the “Trotsky-Bukharinist agents of fascism” mentioned in Figure 3.5). Common to all these images is the potential or display of great force. The hand is never hesitant or, for that matter, feminine.12 Whether hoisting his weapon, shielding the innocent, or pointing westward, the Red Army man of World War Two illustrations served as a powerful visual symbol of the country’s dedication to the fight against Germany. This leads one to contemplate what happened representationally to those same brave soldiers wounded in the valiant effort to defend the motherland. Beyond the celebration of a few iconographic examples, the portrayal of disabled veterans was decidedly complicated.13 Their courage and sacrifices were hailed in print and over the airwaves. They figured increasingly in fiction and, eventually, in film.14 Yet visual illustrations of people with severe impairments were noticeably lacking.15 In posters, paintings, and monuments,

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u P r- E■Hn M W9 M M C Kl O H I ui h OH U irni M H H O Ba h m a M AM M H BI E PP>C C C /AA HH TT OO BB , ByXAPMh TPOUKk T P O U KK M M C T C: K kO o --Bb X/X AAPPMMHHC:CKkKMm Oa0 4 AUJM3MA I XiI A a irl tl H * P> « U IM 3 M A ' KMTOB TTO

Figure 3.5 Let’s root out spies and saboteurs, poster from 1937 by S. D. Igumnov. Available through the online archive of “The reality of utopia: 20th Century Poster Art” collection at http://www.russianposter.ru/images/r/6-7.jpg, accessed 25 June 2013.

returning soldiers appeared “intact” (perhaps slightly grazed, a modest bandage wrapped around a forehead) or they were wholly absent, marked by an empty helmet or an eternally waiting mother. This invisibility is a notable departure from the practices of both the USSR’s most important wartime enemy and its ally.16 Kononov’s biography made him an ideal candidate to advertise the promise of prosthetics, and upper limb prostheses, in particular. For one thing, his disability was unrelated to the war: the incident that resulted in his amputation occurred over a decade before Germany’s invasion. Through its enthusiastic promotion of Kononov’s device, the state could demonstrate its commitment to the war injured at a safe representational remove, referencing the loss without having to engage or depict it too explicitly. In fact, the attention received by the arm was distinctly out of proportion to the number of amputees ever eligible for, or in receipt of, the device. Even after it had been adapted to accommodate a wider range of amputations

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beyond the middle-third forearm for which it had been designed, Kononov’s arm only ever accounted for a fraction of the upper limb appliances produced.17 Therefore its value should also be measured by its more symbolic contribution to the war effort: fitted with this life-like and capable prosthetic, the emblematic Soviet arm was made whole again, thereby removing any evidence of actual impaired bodies. The inventor’s personal history reinforced this alternate narrative. He was born into a poor family with many mouths to feed, forcing his father to leave the village to find work with kulaks. He died when Viktor was only ten, at which point the boy entered the workforce to help support his family. Drafted into the Imperial Army in 1915, he later worked as an auto mechanic for the OGPU (secret police unit) during the Civil War and eventually joined the transport division of the Red Army stationed in Mongolia.18 On October 28, 1928, while driving his superior to headquarters by motorcycle, Kononov was involved in a serious accident, as a result of which his right hand had to be amputated. Although he recovered enough to return to his job a few months later, he no longer drove “masterfully, with strength and confidence,” according to a 1940 article promoting his invention.19 He was quickly disillusioned with the highly touted cosmetic arm purchased from Germany: three fingers broke off on his very first business trip. Resolving to make one himself, Kononov first turned to the study of anatomy. Taking advantage of his location (and, undoubtedly, his status as a Russian stationed with the occupying Red Army) he appropriated a body from the above-ground burial site in which it had been laid to rest.20 With the expertise he gained from the dissection of this unwitting volunteer Viktor Efimovich constructed his first prosthesis, using aluminum and ebony. This crude, unattractive, and passive device enabled him to travel widely on his own by car and motorcycle, but he was still dissatisfied.21 He wanted a limb with fingers that bent at the joints, capable of grasping objects. To achieve this he fitted the fingers with steel cables running from the tips to a single cable wound around a drum within the palm.22 The hand, which could be exchanged for a work-specific tool, was attached by a metal band to a sleeve, itself fastened to a shoulder harness. A movement of the shoulder pulled the cable running from the shoulder to the hand, causing the fingers to bend. Eventually Kononov added a lock mechanism to the sleeve, securing the fingers into position to maintain the grasp for as long as was required. Releasing the mechanism would cause the fingers to release and the hand to reopen23 (Figure 3.6). In 1932 the Moscow Semashko Factory for Prosthetic Semi-finished Products produced a prototype and Kononov utilized his newly designed limb successfully for a number of years. Hired by the Prosthetics and Orthopedics Scientific Research Clinic of the Social Welfare Commissariat to continue improvements, he returned to Moscow in 1939.24 Among the first recipients of his invention were soldiers injured in the Winter War with Finland (1939–40).25 In light of extremely positive feedback, the Semashko factory was given an order to produce 2,000 devices.26 After several years of clinical and probationary industrial trials, the Kononov arm was approved for serial production in the RSFSR in 1946. By June of the following year 47 factories across Russia had been selected to begin manufacture.27

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Figure 4.2 Poster by Alexei Radakov: An illiterate person is like a blind person: he faces misfortunes and disasters everywhere, 1920. Reproduced with permission from the online archive ‘The reality of utopia: 20th Century Poster Art’ collection at http://www.russianposter.ru/images/r/9-22.jpg, accessed 25 June 2013.

the Deaf), cooperatives, and the open criticism of rights violations. Social services were instructed to assist disabled people in economic activities to transfer them into the labour force (Decree of the People’s Committee 1923). Labour resources that were not used remained the active labour force of tomorrow. Disabled people were therefore ‘a reserve army of labour’ – their status was determined not by their present state, but by what they could become in the future (Bauman 1998: 90). Though these ‘reservists’ did not enjoy a high level of material well-being, they were given some modicum of social care. Mechanisms for categorizing disability were reinforced by strict state control over society and the accumulation of ‘expert’ knowledge about disability in a context where rational management theories dominated state planning and policy.

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Stalinism emerged in 1929 with the mass collectivization of agriculture, abandonment of market economics and rapid state-commanded industrialization through Five-Year Plans as well as major social and cultural changes (Spring 1993: 8). In 1931 the Soviet state redefined its concept of ‘invalidity’ by basing it on one’s ability to perform duties in the production process (cf. Fieseler in this volume). Social welfare bodies were instructed to promote rational employment by training and retraining disabled people and a system for categorizing people and placing them in different institutions was developed. Employment was provided in the specialized artels (workshops) and cooperatives that had been created in the 1920s. In addition, special employment commissions were established at city, area and regional levels and tasked with assigning a proportion of job vacancies to disabled people. These vacancies were mainly occupied by Civil War veterans with mild impairments (Iarskaia-Smirnova and Romanov 2009: 156). During the 1930s opportunities for veterans and other disabled people to engage in independent economic activity expanded slightly through the merging of cooperatives into trade associations. However, this process was based on a rigid network of control according to the regime’s new social stratification in which many disabled people were distrusted: Class-alien elements are penetrating disabled people’s environments and, despite having nothing in common with disabled veterans, they call themselves invalids while engaging in different shady deals (standing in queues and speculating, running unofficial shops etc.) Such ‘invalids’ generally include disabled kulaks, former merchants, White Guardists and other classalien elements. (Verzhbilovskiy 1932: 28, author’s translation) In the 1930s, government pressure for films with a strong public appeal was especially high and socialist realism was the only accepted visual style (Lawton 1992: 4). A distinctive aesthetization of labour and celebration of its heroics was a means for the socialization of the individual seen as necessary to create new Soviet industrial society. Socialist realism as a style of art glorifying socialism and communism, the proletariat and its Party, was thus a ‘machine for distilling Soviet reality into socialism’ (Dobrenko 2007: 6) in which disabled heroes became pure metaphors of reality. A ‘factory of illusions’ worked to legitimize and disseminate Bolshevik ideas to a large and mainly rural population. The silent Soviet propaganda film One Million Two Hundred Thousand (Petr Galadzhev, 1931), which was produced at the initiative of the Central Institute of Disabled Labour of Narkomsobes (the National Committee for Social Provision), showed the large-scale transformation of disabled people into shock workers (udarniki) of socialist labour. Such a ‘reforging of human material’ followed the ‘conquest’ or ‘subjugation’ of nature in socialist realist discourse as well as the mass population’s presentation and selfpresentation (Dobrenko 2007: xvi). The socialist realist hero represented the already ‘reforged’ masses who have been disciplined by brave and epic examples. Disabled people lived in a transformed world: they were not just cripples converted

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into heroic ‘shock workers’, but also politically correct and healthy citizens with a new way of life. The first part of the film One Million Two Hundred Thousand caricaturizes prerevolutionary social care by depicting the aristocracy as leading vacuous lives and drinking at benefit nights while the blind and legless veterans of the ‘imperialist’ First World War are left to the whims of fate and forced to be thankful for meagre alms. Disabled peasants returning from war are shown as helpless in their immobility while their wives are overloaded with farm work. The next scene shows how the flows of city pedestrians and moving cars are stopped by a legless man in a small wheel frame. Pushing off the ground with makeshift poles, he jumps over kerbs and weaves in and out of the traffic (Figure 4.3). The scene romanticizes the melding of person and machine and makes movement a core theme, which was typical for the filmmaker Dziga Vertov and his followers. The full unity of a disabled human body and a machine is presented in later parts of the film, starting with medical tests to develop the necessary prostheses (Figure 4.5). The film explains how disabled people should live in a ‘cosmopolitan industrial society (not the world of patriarchal village)’ (Bulgakova 2005: 149) by working in industrial enterprises, exercising regularly and enjoying ‘civilized recreation’

Figure 4.3 Screenshot from One Million Two Hundred Thousand, 1931. In this scene the director and cameraman are preoccupied with movement itself. (RGAKFD No. 1491, permission granted by the archive.)

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Figure 4.4 Screenshot from One Million Two Hundred Thousand, 1931. The disabled body is shown as an object of medical scrutiny and expertise. (RGAKFD No. 1491, permission granted by the archive.)

in a shiny sanatorium (kul’turnyi otdykh in reference to the notion of kul’turnost, which was the civilizing mission of the new elite within the educational framework of Stalinism). Positively presented aspects of life included moving like a machine, being part of an assembly line, eating with screw-in prosthetic cutlery and drinking with a glass-holder. At the same time, this modernist vision demanded that disabled people be objects of scientific examination and rational management. The achievements of Soviet medicine were a constant theme in Soviet literary and visual outputs about disability in line with the promotion of Soviet management, medicine and technology. The moral authority of the medical experts stemmed from their qualifications and training that were ‘famous all over Europe!’ (the film The Fighter Pilots). The representation of disability in One Million Two Hundred Thousand was based on binaries. The film is structured along such clear dichotomies as capitalism-socialism, experts-disabled people, disability-shock work (udarnyi trud), workers-welfare dependants and backward-technically advanced. ‘Deviant’ disabled people are also depicted in the film: they are dependants who rely on their pensions, misuse alcohol and lead an ‘antisocial way of life’. In the 1930s, ‘parasites’, violators of labour discipline and ‘enemies of the people’ were identified as

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ip m c ip m cip m c ip m c ip m cip m c ip m ccip m c ipmmccip ip ip m mc ip m c ip m c ip m cip m c ip m c ip m cip m c ip m c ip m cip m c

Figure 4.5 Poster by unknown artist, I violated traffic regulations, 1939. A disabled person is shown as the cause of his own problems. (Copy from author’s collection.)

undesirable elements of society (Manning and Davidova 2001: 208). The supply and discipline of the labour force was the state’s main problem and everything that hindered these goals was considered damaging. Although the Constitution of 1936 specified that labour is the honourable commitment of every citizen who is able to work, the principle ‘ he who does not work, shall not eat’ remained. In order to prevent resistance, new labour patterns were developed that required highly disciplined work habits and included differentiated remuneration and special welfare benefits depending on the type of work. Disabled workers were also affected by these regulations and expectations of high labour contributions. Unreliable and anti-Soviet personages ‘were part of a system of signs imposed by the authorities in an effort to transform mass consciousness’ (Bonnell 1997: 7–8). Doubt over the reliability of disabled people, their personal responsibility and the authenticity of their impairment were leitmotifs that passed from posters

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(Figure 4.5) and films into social reality and ultimately the everyday lives of ordinary Soviet people. Such characterizations relied on a moral model of disability associated with sin and feelings of guilt. Even though they were not overtly based in religion, this model drew on biblical references and Orthodox Christianity. It was also based in modernist precepts (Hughes 2002) in which the classification of human value by labour contribution was especially important, and can therefore also be regarded as an economic model of disability that assesses an individual’s productivity. The rise of cities, science and industries led to the commodification and standardization of the human body while disability was seen as a deviation that needed to be controlled. This biopower emerged as a means of control in relation to public health and other economic and political issues in the late eighteenth century (Foucault 2003). The ‘rational management’ of disability related to a person’s capacity to work ultimately led to the marginalization and exclusion from employment of many disabled people, thereby creating a juxtaposition between a good working citizen and a disabled ‘sponger’.

‘With such people we will win any war!’: clichés of military heroism in the ‘Grand Style’ period Millions of Soviet soldiers died in the war against Nazi Germany, but many more returned home after victory. Disabled people encountered many problems during demobilization (Dunn 2000; Fieseler in this volume), having to deal with a dysfunctional civilian bureaucracy and reintegration into civilian life in one of the most devastated countries of Europe. In an attempt to control the increasing number and flows of disabled people the Soviet government extended its system of institutional care. This move meant that facilities for job placement slightly expanded, even for people with childhood disabilities. However, such support was delivered in conditions of segregation since the education and employment of disabled people were arranged in special schools and factories that removed them from mainstream social life. Official pressure was put on factory directors and organizations to broaden job opportunities for war veterans during and after the war, but many disabled ex-servicemen were nonetheless out of work and languished in poverty while their complaints and protests often led to government persecution (Fieseler 2005). The Soviet leadership was suspicious of veterans’ political loyalty and worried about the costs of affording a special status to such a large group of the population, meaning that no official organization of disabled veterans or indeed physically disabled people was permitted (Edele 2009). Many disabled veterans were arrested for being ‘spies’ (za agenturnuyu deyatel’nost) or for anti-Soviet and anti-kolkhoz propaganda and sabotage, for which they were tried as criminals, shot or sent to gulag settlements. The security services placed disabled veterans under supervision and registration while military disability became a politicized category included in the list of potential dangers to the regime. At the same time, the criminal meanings of disability as a category of economic risk were constructed. The disabled ‘reserve army of labour’ remained

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part of Soviet plans for modernization, but its members were tested increasingly frequently for their ‘ability to work’ while disabled people’s economic activity was tightly monitored and controlled by state organizations. Within this context, artistic representations of disability in the Stalinist ‘Grand Style’2 (bol’shoi stil’) period emphasized patriotism, military heroism and the clichés of brave ‘super-cripples’ who overcome all barriers (see Shapiro 1993 about the ‘super-crip’ phenomenon). At the very beginning of the Second World War the Soviet public avidly consumed stories about military valour while later they heard tales about the suffering of the Soviet people. Both literature and visual arts created images that contained disabled characters displaying an inherent ‘Stalinist bravery’ (Dunham 1989: 151). Remarkable disabled heroes of these times who wielded great influence on the culture of several Soviet generations included the fighter pilot Alexei Meresyev, who was immortalized in the novel A Story About a Real Man by Boris Polevoi (1946) and film of the same name by Alexander Stolper (1948). The novel was based on the true story of a Soviet fighter pilot whose plane was shot down during the Great Patriotic War (Second World War). Masaryev survived and crawled through dense forest, in frost and snow, practically without food for 18 days until he reached a village. He was rescued and nursed by kolkhozniki (villagers of a collective farm) before being transferred to a hospital, where both his legs were amputated. He was supported by his fiancée, doctors, medical staff and fellow patients and inspired by the example of a First World War ace who continued to fly after losing one of his legs. Yet most of all he was driven by patriotic feelings as the war had not ended and the nation needed its hero. Maresyev overcame his doubts and pains when walking on prosthetic legs in order to take to the air again as a fighter pilot. In similar depictions of disabled heroics, the front-line soldier Aleksei Voropaev from the novel Happiness by Piotr Pavlenko (1947) immersed himself in Party work despite his prosthetic leg while the hero of the hugely popular pre-war film The Fighter Pilots by Eduard Pentslin (1939) lost his sight as he saved the life of a child. It is striking that Soviet films dealing with war underplayed the vivid and long descriptions of wounds found in literature (Kaganovsky 2008: 10), for example the canonical narrative about Pavka Korchagin from the novel How the Steel was Tempered by Nikolai Ostrovskii. Images of sickness and disability were absent from the first screen adaptation of this novel (Mark Donskoy, 1942) whose main message was an appeal to mobilization. Disablement was only shown on the screen in later cinematic adaptations of this text (1956 and 1973). Similarly, impaired bodies rarely appeared in the posters and paintings of the Great War period and were generally represented by covert signs such as bandages or crutches. The figure of a soldier who was disabled on the frontline and returning home functioned as a symbolic sign of the consequences of war and devastation. Injuries, scars and disabilities are ‘easily readable emblems of patriotic sacrifice’ usually attributed only to men (Michel 1993: 260). In years of war such ‘cinematic recognition of the large number of disabled veterans that society would need to embrace’ (Youngblood 2007: 79) was an important political step that can be

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found, for example, in Ivan Pyrev’s film Six o’clock in the evening after the war (1944). In Stalinist Russia, the figure of a heroic military ‘invalid’ represented the paradox of living with lack and damage while striving to build communism: Bandaged, blinded, limping, paralyzed – these “disabled” heroes represented the inverse of the fantasy of extravagant virility, of the “flesh to metal” narrative that imagined the body tempered rather than undone by Bolshevik commitment. (Kaganovsky 2008: 6–7) The typical hero of socialist realism was an ordinary Soviet person who became a fighter and leader through his communist convictions and stamina in the face of trials. Such heroes were depicted as epitomes of valour and strength and therefore included in Soviet school curricula as compulsory reading. The films suggested that disability temporarily undermined the traditional gender role of main male characters. The loss of masculinity was depicted by the arrangement of personages on screen: disabled male characters were usually shown lying down while female characters bent or stood over them. Such scenes usually portray a sick male body while women are shown acting as nurses taking care of men with impairments, like in the lyrical film Actress (Leonid Trauberg, 1943). Kaganovsky (2008: 4) underscores that ‘the two forms of masculinity exist together, that together they create the ideal Stalinist man: hyperbolically strong, yet without arms or legs; committed to the cause, yet permanently chained to his bed; visionary, yet blind’. Military heroics thus occupied a central place in cinematic discourse about disability during the Grand Style period and later during the Thaw period of cinema beginning in the mid-1950s. However, the focus on military achievements was replaced by the labour feats of former front-line soldiers. Disabled heroes resisted bureaucracy and inertia and their lives served as models for other Soviet citizens, including disabled civilians. Films thus did not reflect the reality faced by disabled people returning from war, namely great everyday hardships due to suffering, isolation and the limitations of the welfare system. A disabled character was always a man wounded at the battlefront and restored to life by Soviet medicine and a patriotic will to succeed. The personal qualities of a film character were framed by ideology: socialist heroes therefore challenged dissenters and opponents of the regime as well as triumphing over personal enemies and their own pain and sickness.

Limited social change during the ‘Thaw’ period From the mid-1950s onwards large reforms under Nikita Khrushchev (1956– 64) attempted to rhetorically and practically dismantle Stalin’s dictatorship and re-establish Lenin’s principle of ‘democratic centralism’ in political and economic management. The restoration of social justice and reduction of social inequality became key political priorities in this period. However, these achievements coincided with hasty economic reforms accompanied by heavy strain on the whole administrative system at the end of the 1950s. Both ‘shady dealers’ and small

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craftsmen became victims of repression through another campaign searching for enemies, embezzlers and speculators (Fitzpatrick 2006). The constant broadening of the category ‘social parasites’ turned into a political witch-hunt. The years of the Thaw were thus a time of contradictions, when risky Party initiatives and new waves of repression coincided with progressive measures to improve the lives of Soviet citizens (for a general history of this period see Pipes 2001). The period from the mid-1950s to mid-1960s saw the centralization of the economy, which led to the liquidation of cooperatives of disabled people and the nationalization of the labour, leisure and educational organizations that had belonged to these unions. During this time laws on state pensions and pensions for kolkhozniki (workers on collective farms) were passed and a single scale of disability pensions adopted. In addition, the number of boarding schools and residential institutions increased, the system of disability assessment was revised and higher education opportunities for persons with hearing and visual impairments were slightly broadened. In social policy the most obvious trend was the transition away from the economic participation of disabled people towards the provision of pensions and institutional care for them. As the Russian disability activist Valery Fefelov wrote in his famous book There are no disabled people in the Soviet Union! (1986), these policy developments transformed the societal image of a disabled person from an entrepreneur who enthusiastically overcomes obstacles to a passive recipient of a pension. The number of nursing homes and disabled people living in them grew steadily from the late 1950s, a trend that was cited as evidence of the socialist regime’s care provision (Tretii god pyatiletki 1968: 3). However, these facts also demonstrated how a great number of citizens were disabled by the workings of the Soviet welfare state. Nursing homes were badly financed and the treatment of patients was often so detrimental that being sent to a residential institution was equal to ‘warehousing’ (see Gallego 2006). Some disabled people tried to create informal associations in the 1950s in the hope of somehow participating in societal life and improving their living conditions, but they were subject to repression by suspicious authorities (see Fefelov 1986; Raymond 1989; White 1999). In the late 1950s, a period of cultural renaissance brought Soviet cinema into the international arena: The emergence of talented directors and screenwriters, together with a new generation of actors and a fresh beginning in terms of theme and style, all helped the cinema to regain the confidence of the public, and contributed to the leading role that films came to play in Soviet culture and ideology in the 1960s and early 1970s. (Golovskoy 1992: 264) Visual representations of disability in this period were rather contradictory. The fundamentally new thing was that cinematic plots of the Thaw presented ‘complex everyday events including those related to private life’, thereby introducing audiences to conflicts that had previously been excluded from the

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sphere of representation (Dashkova 2008: 157). ‘The Thaw war films focused on wartime as much as war, and their protagonists represented a cross section of the Soviet population’ (Youngblood 2007: 235). A typical character would be a just and generous disabled person who returns from war, as in The Sun Shines for Everybody (Konstantin Voynov, 1959). Similarly, one hero in The Chairman (Alexei Saltykov, 1964) is a one-armed frontline soldier who dares to challenge Stalinist bureaucracy at the end of 1940s and in fact acts as a herald of the Thaw ideology. A secondary character in the Ballad of a Soldier (Grigori Chukhrai, 1959) – a disabled veteran – is presented as an ordinary Russian just like the main character Alyosha as well as everyone he meets in his odyssey (Youngblood 2007: 124). Films about disabled people without a military connection also appeared that abandoned earlier stigmatising representations and scenarios, for example Unfinished Novel (Fridrikh Ermler, 1955). An ‘area of unaccounted meanings’ gradually formed in the cinema of the Thaw period (Dashkova 2008: 164), which explored the complex lives of people who were not cult disabled heroes, but rather ordinary people with disabilities, thousands of whom had been discharged from hospitals with amputated limbs, deafness or blindness, and nowhere to go. Alexey Maresyev, the hero of the novel and film Story of a Real Man discussed in the previous section headed the Committee of Veterans of the Second World War in 1956, but this organization acted as a mouthpiece of Soviet propaganda and did not improve the lives of disabled people at all. Indeed, it was in the 1950s that the policy of isolating disabled people from society found its widest application as expressed in mass campaigns to resettle disabled veterans from cities and villages to nursing homes where people languished in poverty and where it was hard to live and easy to die (see Gallego 2006; Phillips 2011). These disabled people were lost to their relatives and forgotten by the country that they had defended and for which they had sacrificed their health. These experiences were later brilliantly exposed by Yurii Nagibin (1982) in his collection of short stories called Rebellion Island, which was adapted for the screen during the zastoi (stagnation) period and will be discussed later. Claims of injustice resonated in the attempts of disabled people to take part in public protests and creative work during the Khrushchev period. Disability was then not a metaphor for limitation, but for liberation from social boundaries and fears. In a remarkable scene from Varlam Shalamov’s story The Funeral Oration (1960), a group of prisoners discuss whether they want to return home, what they expect and what they really want from their lives. Their conversation is finished by Volodya Dobrovoltsev, who sees disability as a source of empowerment and resistance: And I – his voice was calm and slow – I wish to be a stump. A human stump, you know, with no arms, no legs. Then I would find strength within myself to spit in their faces for everything they did to us. (Shalamov 1998, translation by the author) In seeking to touch upon sensitive themes, for instance, the everyday life of deaf people, the creators of documentary and feature films created lyrical and emotional

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images that were sometimes quite far from reality. In the debut work of Mikhail Bogin, the short feature film Pair [Dvoe] (1965), personal relations are depicted with warmth and sincerity, but the actress playing the main heroine with a hearing impairment does not communicate with sign language. The lack of sign language signifies an attempt to hide or downplay the disability thus echoing ‘compulsory mimesis as a project of state power’ (Kayiatos 2010: 25) and an ideology of repressing other languages as potentially dissident. Despite the more sympathetic and ordinary depictions of disability during the Thaw period, medicalist perspectives that subjected disabled people to various kinds of scientific research and treatment remained a universal trope in Soviet discourse. The bodies of disabled people were therefore not their own property, but rather objects for correction and manipulation by managers and doctors. This was clearly demonstrated in the documentary film The Examination of Conjoined Twins (Piotr Anohin, the Academy of Medical Sciences of USSR, 1957) which documents the life of the conjoined twins Masha and Dasha from birth to the age of eight under the intent gaze of doctors intensified by the camera. Although it must be recognized that this film was produced and intended for a specialist medical audience and cannot be compared with films for public distribution, it nonetheless reflected an official preoccupation with ‘curing’ disability. Indeed, figures in white robes repeatedly appear in the visual messages about disabled people created by Soviet artists.

Moral variations in the visual aesthetics of disability during the stagnation period (1964–85) With the collapse of Khrushchev’s regime in 1964, the political and economic underpinnings of social policy changed. The late 1960s were marked by remarkable improvements in living standards and personal incomes. On the other hand, the country under Brezhnev began to stagnate because society started to live beyond its means and to waste resources in an unprecedented manner by using irrational management methods and distorted price structures. Economic efficiency was also undermined by expensive armament strategies in Europe and Asia, by economic and military support for ‘progressive’ regimes in developing countries and by a hopeless war in Afghanistan. As a result, the overall moral climate was, at the end of the 1970s, on the way to total stagnation: the last sprouts of public free-thinking were suppressed (dissidents were exiled, expelled or put into correctional and psychiatric facilities), the process of rehabilitating victims of Stalinist and post-Stalinist repressions was halted and the cult of Stalin’s personality was no longer criticized. As society grew increasingly disappointed and frustrated, motivations for high-quality work and labour discipline faded while levels of alcoholism and criminality came to a peak. Moreover, governmental control and isolating forms of care intensified during the late socialist period such that disabled people had few chances for economic independence. In the 1960s, the polio survivor, talented engineer and great activist Gennadii Guskov founded a workshop within a state residential institution in the small town

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of Voronezh so that a group of disabled people could manufacture consumer goods. He published an important and critical article in the magazine Sotsial’noe obespechenie (Social provision) (Guskov 1973) and sent letters to the top officials trying to fight Soviet bureaucracy. Guskov demonstrated that citizens with serious physical impairments could work and improve their life situation and his efforts were partially successful. In 1976 the Council of Ministers of the USSR finally passed Resolution 1010 on ‘Additional measures to improve professional education and employment for invalids’. However, Guskov was soon exiled to a distant asylum associated with dissidents (see Kak eto bylo [How it was] 2008). It was during the stagnation period that the shoots of the human rights movement and civil initiatives of disabled people emerged, but were rigorously repressed. At the end of the 1970s, the ‘Action Group’ of disabled people was founded by Yuri Kisselev and Valery Fefelov and actively worked until 1982 despite constant persecution, oppression and arrests (see Fefelov 1986; Kak eto bylo [How it was] 2008; Raymond 1989: 236–37). While official sources insisted that the government was seriously concerned with the social problems of disabled citizens, the activists of the Action Group not only highlighted the weaknesses of the Soviet welfare system, but also argued that radical change was necessary. From the end of the 1970s and especially in the 1980s outstanding intellectuals, writers and journalists appealed in the press and in their books to support such enthusiasts and campaigned for the employment of disabled citizens (White 1999). However, these publications were in many respects loyal to government and did not challenge the foundations of the Soviet regime. The 1970s brought relative artistic stagnation and the Soviet cultural sphere was governed by a ‘more conservative policy on the arts combined with a consumer mentality to give a commercial slant to film production’ (Lawton 1992: 8). Regardless of their genre, directors skilfully blended ‘entertainment with ideology, offering the public simple stories meant to sustain the status quo’ (ibid.). Official discourse in the stagnation period thus continued to champion disabled military veterans, ‘the real man’ and the achievements of state care. Broad film distribution meant that a hero who successfully builds his career despite his impairment and the invariably low expectations of people around him could become a vivid role model for the masses (the television series How the Steel was Tempered, Nikolai Mashchenko, 1973, film version from 1975). Three key themes can be identified in the 16 documentary films in the RGAKFD collection that feature a disabled person and were made between 1965–85: firstly, the employment of disabled veterans; secondly, the achievements of Soviet social provision and medical treatment in the USSR; thirdly, the problems of social and foreign policy in other countries. In the first case various workers were represented – teachers, mechanical engineers, tractor operators and artists – all of whom were disabled veterans of the Second World War. The second group of documentaries depicts the achievements of socialism in producing hand-controlled cars for disabled people as well as providing hospital and medical care – the main characters of these plots are doctors and nurses who treat and assist disabled people. Finally, in the third group of documentaries, the

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image of disabled people is used to criticize social provision abroad or demonstrate the Soviet Union’s support for allied countries. It is interesting that political demonstrations by disabled people abroad were reported in news from 1965 to 1967, but practically disappeared from documentary films during the period of stagnation. Two documentary films – the cinematic almanac No. 13 Around the Soviet Union (Vladimir Ramenskii, 1965) and Return to life (Alexander Burimskii, 1966) – presented the achievements of Soviet prosthetics even though both actually related to Italy. In the mid-1960s the Soviet Union actively supported European communists and its closest relations were with the Italian Communist Party, which was one of the most authoritative political forces in Italy. The first film demonstrated how an Italian decorator who lost both hands in an accident was helped in the Leningrad Institute of Prosthetics, where prosthetic devices were made for him and where he is taught how to use them. The second film is narrated by the Italian journalist Giovanni, who meets disabled Soviet citizens with industrial and military backgrounds as well as young men injured by accidents. His conversations take place in a hospital framed by shots of an ‘artificial hand’ (Figure 4.6) as well as in workplaces, special schools and dancing lessons. These two propaganda films were shot at the request of the State Committee for Cultural Relations with Foreign Countries. At that time, cultural centres and communities of friendship with the USSR were being founded around the world and generously supplied with Soviet books and films. The leitmotif of the film Return to Life was socially useful work and it begins and ends with the words of a disabled war veteran, the poet Ivan Shamov, from his interview with an Italian journalist: ‘I regard myself as a lucky person because I live and work, work in any position.’ At the same time as using disability to promote the USSR abroad, Soviet documentary cinema – and some fictional films – spread messages that disabled people were dependent and needed to be weaned off their reliance on the state. It is important to remember that labour was a key part of Soviet citizenship and a central element of the socialist value system (see Alexopoulos 2006). The updated Constitution of 1977 proclaimed the slightly different principle of ‘each contributing according to his ability and receiving according to his need’, but state rhetoric and policy nonetheless emphasized that socially useful work would determine an individual’s position in society. The dialogue from Leonid Gaidai’s comedy Operation ‘Y’ (1965) is illustrative here: DRIVER: Where is this damn invalid?! BYVALYI: Don’t kick up a row, I’m the invalid! In this scene of the film, Byvalyi is a trickster who drives a small invalidka motorized carriage that is blocking traffic on a street. Passers-by are shown laughing when Byvalyi (a large athletic man who is also a criminal) appears since it is clear that he simply pretends to be an ‘invalid’ by riding a special motor-car for disabled

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Figure 4.6 Screenshot from the film Return to life, 1966. Achievements of engineering – for example, a bionic artificial hand – were key visual elements along with numerous devices and medical workers in Soviet documentary films about disabled people. (RGAKFD No. 20988, permission granted by the archive.)

veterans and thereby claiming related benefits. He easily moves the vehicle with his hands (Figure 4.7), thereby freeing the road for a truck. This episode clearly presents a leitmotif of ‘spongers’, false ‘invalids’ and the manipulation of disability status and related benefits. Images of disabled people as dependent ‘parasites’ appeared in posters and films and perpetuated traditional messages of victimization, compassion and heroism. Later, in posters issued as part of Gorbachev’s anti-alcohol campaign in the 1980s, images asserted that disability and related social exclusion were caused by personal irresponsibility (Figure 4.8), thereby echoing posters about malingerers from the 1920s. In contrast to official discourses about disability, notes of anger, rebellion and liberation featured in some works of fiction during both the Thaw period, particularly in samizdat (underground) literature, and also the later stagnation years. The 1982 collection of stories Buntashnyi ostrov (Rebel island) by Yuri Nagibin is a good example. The main character of a story called ‘Patience’ – the disabled man Pasha – was a former soldier without legs who was sent to the remote Valaam island in the middle of northern Russia’s Lake Ladoga to spend the rest of his life in a residential institution together with many other men sharing a similar fate.

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Figure 4.7 Screenshot from Operation ‘Y’. (From the author’s collection.)

According to the story, he was left on a battlefield during the war by a friend who believed him dead and later married Pasha’s fiancée. This friend and his wife live a rather stable and prosperous life, but she is unhappy. During their trip to Valaam, which is also a tourist destination due to its beautiful nature and ancient monastery, she suddenly meets her beloved man whose life stands in absolute contrast to her own. Yet he strongly refuses to follow her: You are browned off and constantly whining wimps! You will never understand where your face is and where your ass is, and still you moan that groceries are hard to come by. And that you can’t get spare parts. And garages are far from home. It makes me sick. No, I don’t want your ‘grand’ life, it would be too tight for me. Your circle is stuffed full of people longing for spares, slate, trips abroad and other rotten stuff. (Nagibin 1982, translated by author) Interestingly, the harsh criticism of the regime uttered by Pasha was omitted from the screen adaptation of the novel, Igor Talankin It’s Time for Rest from Saturday to Monday (1984), a move that was strongly condemned by Yuri Nagibin. Furthermore, the representation of the disabled character was ‘normalized’ as the legless man is shown walking on prostheses while his critical proclamations were sterilized.

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V

flbHHCTBO! flPMMA m Wi K u WCL TBi p/ Figure 4.8 The reason is drinking (1983), poster of the anti-alcohol campaign of the 1980s that presents disability as the fault of individuals. Reproduced with permission from the online archive USSR Posters, available at http://cccp.narod.ru/fo_ plakat.html, accessed 25 June 2013.

Boris Durov’s film Can’t say Goodbye! (1982) reflects the ideology of the stagnation period. In this work, a man is injured because of his own and his employer’s greed, but gradually adjusts to his new life as a disabled person and finds happiness in family and creative labour. At the end of the film the hero regains his lost masculinity: he starts to work (teaching woodcarving to boys from a village school), his wife is pregnant with his baby and the director’s final shots even give the audience hope for a miraculous recovery as Sergey rises up from his wheelchair. In a crucial moment in the film, the hero compares himself to disabled veterans and simultaneously criticizes those who follow ‘bourgeois principles’: Mother: Son, those who came back from war felt much worse… Sergey: But that was war while here I suffered because of greed! It is no accident that Sergey’s first wife is depicted negatively in the film as a materialistic person who urged him to moonlight and work overtime only to

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abandon him when he was injured. She is called Martha (a non-Russian name) and works as an accountant while his loving and faithful second wife is the truck driver Lida who restores him to life. The stagnation period reinforced the themes of medicalization (with its emphasis on science and technology) and welfare provision in the conceptualization of disability, thereby creating the foundations for the post-Soviet paradigm of social rehabilitation according to which disabled people are treated as ‘clients’ and ‘patients’ with limited citizenship rights. While the government continued to present itself as well resourced and responsible, carefully nursing disabled people, a wave of protest and liberation developed in art and literature, including samizdat, until notions of human rights could finally surface during perestroiika and especially in the post-Soviet period.

There are invalids in the USSR: the reconstruction of visual culture Starting in 1985, the surge of perestroika (Mikhail Gorbachev’s policy of ‘restructuring’ Soviet society and politics) washed away many official prohibitions and for some time it appeared that longstanding taboos and stereotypes rooted in culture could be shaken. International influences also shaped public opinion and governmental approaches – the United Nations proclaimed the period 1983–92 the ‘Decade of Disabled Persons’. However, the beliefs that disabled people should have equal rights and enjoy equal resources were neither properly fixed in legislation nor practically realized. The topic of disability became more pronounced during perestroika and acquired new meanings in visual culture. The 14 documentary films in RGAKFD and television broadcasts from this period are not about cult heroes. Instead, they condemn the inaccessible built environment and lack of compassion and support for such varied figures as disabled veterans of the Afghanistan war (My House is my Castle, 1988), disabled and religious caretakers (Rita and Lena, 1989) and artists (Unfinished Portrait: Lyuda Volkovinskaya, 1990). Directors finally felt free to create powerful and honest pictures of social injustice and human callousness (Valaam Island, 1990) by presenting images of ordinary people, including disabled women, who live full lives and earn respect (Erzhena, 1990). Traditional images of disability did nonetheless persist, including ‘super-heroes’, ‘spongers’ and ‘victims of misery’ (Figure 4.9). Some perestroika films presented disabled people as active and ‘able’ (Gaze, 1987, The Late Rise, 1990, Make Yourself, 1991). In showing the progress and inner world of disabled sportsmen and artists, they still used familiar patterns of ‘the sentimental, nationalist-tinged hagiography of a heroic sufferer … [O]nly a “man of iron” could live through what he has … a man ennobled by his suffering, placed on earth to “inspire” others à la Pavel Korchagin’, Meresyev or Voropaev in earlier periods (Alaniz 2007: online). Despite inevitable continuities with past practice, cinematic language and representations around society and disability significantly changed during perestroika. Undisguised, unvarnished everyday life and ‘non-parade’ personages appeared on screen, for instance the documentary films Every Tenth (1988) and

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Elena Iarskaia-Smirnova and Elena Iarskaia-S mir nd aa n ov

Figure 4.9 Poster by Olga Cutcher, Invalids cannot wait any longer, 1988, in which a disabled person is pictured waiting for a wheelchair to replace crutches. Reproduced with permission from the David M. Rubenstein Rare Book & Manuscript Library, Duke University, available at http://library.duke.edu/digitalcollections/russianposters_ rpcps06010/, accessed 25 June 2013.

Whose Pain is It? (1988) in which members of the fledgling disabled people’s movement uttered sharp and scathing opinions. Many of these early activists were disabled from childhood and had thus experienced undisguised discrimination in the Soviet Union (Figure 4.10). A clear example is an interview with Gennadii Guskov about officials’ interference in his private life, the progress of his workshop and the obstacles created by the authorities (Whose Pain is It?). Similarly, Yuri Astakhov talks about ‘life as an exception’ and how he attempted to obtain an editorial post only to be told that: ‘You are right for us, but we can’t give you the job since you would frighten off writers.’ Gennadii Golovatii (Every Tenth) recalls how his attempts to get a box-seat in the Bolshoi Theatre for his family were rebuffed by an administrator: ‘What? An invalid? This is the Bolshoi

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Figure 4.10 Screenshot from Every Tenth – the poet Gennadii Golovatii speaks about the cynicism of officials in the cultural and welfare spheres. This was the first time in Soviet history that a person with congenital disabilities appeared on film as an activist, critic and ordinary man rather than a passive recipient of help or victim of officialdom. (RGAKFD, No. 23831, permission granted by the archive.)

Theatre! Can’t you understand that it’s immoral?!’ These personal tales were contrasted with the cynical quotes of officials from the Ministry of Social Protection along the lines of ‘There are no disabled people in the USSR!’ Such sharp social films contributed to a new metaphor of disability in public opinion by revealing images that had been incarnated in real life a few decades earlier, but never openly acknowledged due to official claims that socialist society was perfect. Disabled people were represented as ordinary people rather than ‘super-cripples’ or miserable orphans. Their rights to a fulfilling life were asserted and not necessarily determined by productive work for the motherland. In addition to new work and visual approaches to disability, several key films that had long been banned by the Soviet authorities were finally released during the perestroika period. In spite of the choking political climate and authorities’ vigilant surveillance of the artistic intelligentsia, numerous films were made during the 1960s that overcame ideological boundaries and were examples of free thinking and human dignity. Such films became masterpieces in both Russian and world cinematography. As a rule, these works had troubled histories. The film Andrey Rublev by Andrey Tarkovsky (1967) was re-cut and virtually abandoned

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before being released in a restored version in 1987. The director depicted a mentally disabled and deeply religious girl as an ingenuous creature personifying the purity, innocence and the naivety of the Russian soul, thereby using symbols of national identity in a classical way. The realistic style and representation of disability that first appeared in the Thaw period cinema was clearly displayed in the film The Story of Asya Klyatchina, Who Loved but did not Marry by Andrei Mikhalkov-Konchalovskii, which was produced in 1967, but only released 20 years later. A disabled body often ‘is represented as a metaphor for emotional or spiritual deficiency’ (Chivers and Markotic 2010: 2). In Konchalovskii’s film, the vulnerability and innocence of the main character Asya do not imply tragedy or humiliation, but rather warmth and happiness. It was shot in cinéma vérité style and offers dramatic monologues about life on kolkhoz collective farms. The film presents such people as the hunchbacked chairman of the kolkhoz and the tractor driver, who was injured in war and is missing his fingers. Such storylines are interwoven with deep and sincere ethnographic narratives about everyday life in Soviet villages (Figure 4.11). The disabled characters that appear in many Soviet films were usually played by non-disabled actors. One exception is the romantic action film Assa (Sergei Soloviev, 1987), in which little people play the actors of a theatre of dwarfs. One

Figure 4.11 Screenshot from The Story of Asya Klyatchina, Who Loved but did not Marry, which featured ordinary people together with professional actors, including a hunchbacked figure of the kolkhoz chairman. (Screenshot from the author’s collection.)

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Figure 4.12 Screenshot from the 1989 film What Happened by the Sea by Ayan Shakhmalieva, from the author’s collection.

of them is the secondary hero in this dramatic story of love and passion. He and other little people act as exotic and strange characters – they are rock musicians, gangsters and representatives of ‘alternative’ counter-cultures in the lead character’s secret dream world. This film was watched by more than 25 million people during the first months of release and still has many fans due to its depiction of the everyday realities at the end of the Soviet era. It was during the perestroika period that disabled children first appeared in mass-audience films. The heroines of Ayan Shakhmalieva’s film What Happened by the Sea (1989) are young inmates of an institution for children with spinal problems, a boarding school where they undergo medical examination and treatment. Their lives consist of physical exercises, orthopaedic procedures, compulsory viewing of the official news programme Vremya (Time), all kinds of restrictions and incessant control. Like other closed institutions, the boarding school works as a metaphor for totalitarian society with its rigid categories of normal and abnormal, beauty and ugliness, purity and danger. The residents are pretty teenage girls whose impairments are only noticeable when they wear medical devices (Figure 4.12). However, the boys from the nearby naval school avoid their female peers in special white collars when invited to a dance in the boarding school, asking ‘Does everyone here have these muzzles?’ In the film, a crowd of children rallies and is excited by the rousing rhymes of their leader Svetlana: Comrade kids, we are all responsible For the deeds of these teachers,

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Elena Iarskaia-Smirnova and Pavel Romanov Shame on them for taunting us in such a way Knowing that you can’t resist. No more overbearing lawlessness and boorishness, Down with hated tyranny! We don’t need tears and compassion Hunchbacks – take to the barricades!

Some children suggest changing the word ‘hunchbacks’ (gorbatye), but Sveta is against this: ‘It is offending if others use this term, but we can say that!’ The outpouring of resentment touches upon forbidden ground: it turns out that the institution’s headmistress is corrupt and some children wait years to be admitted. One girl’s father even goes to fight in the Soviet war with Afghanistan in order to earn sufficient money for the informal payments that will facilitate his daughter’s medical treatment. The apotheosis of the breakdown of order is stealing a teacher’s wig and placing it on the head of a stone bust of Lenin in the school’s courtyard. The miserable teacher in question, Zoya Grigorievna, thievishly looks around and apologizes to her personal and political idol before regaining her stolen dignity. The next morning the rebellion is defeated in the headmistress’ office. Many girls still need treatment, but they are expelled and sent home for misconduct. The defeat of the children’s rebellion by the total institution can today be seen as a metaphor for perestroika’s ultimate failure and the problems faced by current movements of disabled citizens. Soviet visual culture thus cardinally changed during perestroika and films appeared that would previously have been inconceivable due to their straightforwardness, criticality and use of expressive means. This was encouraged by the lack of censorship as well as the newfound autonomy of artists in relation to both Party bureaucrats and the market. Critical and previously censored works by nonconformist writers and directors of so-called ‘shelf films’ (polochnye fil’my) were finally released and became part of Russia’s literary, cinematic and documentary production. Disability was one of the metaphors of this new visual culture and many makers of such films (both fiction and documentary) not only documented the negative aspects of reality – the rigidity, inequity and cruelty of the regime – but also tried to consider the agency of disabled people by opening up their lives, love and personhood. Nonetheless, disability was still used to symbolize strength of mind and sacrifice, qualities that were the ultimate proof of national authenticity (cf. Alaniz 2007).

Conclusion: changes and challenges of (post) Soviet disability imagery Films and posters are visual products that emerge from many spoken and unspoken artistic, ideological and financial negotiations. Any film created in a certain period of history is both a specific document with its own internal logic and narrative and also part of the social reality of the relevant period. The study

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of the presentation of disability and impairment in visual culture is important for understanding disability policy as symbolic work that inscribes the meanings of normalcy. In the Soviet Union, such ideological work included the attempts of the state to govern the population, to shape good citizens according to the cultural norms of socialist society and to create new men and women suitable for the needs of the state. Such goals and meanings were produced, redefined and experienced by different social actors, including artists and the Soviet public. Disability was a floating signifier in Soviet visual discourse (Deleuze 2004; see also Hall 1996) that bestowed meanings required for the symbolic production of socialism at particular periods of Soviet history. The lived realities of people with disabilities were rarely equivalent to official conceptions; instead, disability functioned as a meta-symbolic term supposed to re-establish the complementarity between signification and knowledge (Diehl 2008: 108). Disability was largely used in Soviet posters and film as an iconic sign and metaphor that should be considered in the context of the USSR’s political ideology, welfare regime, construction of gender and restrictions on civil dissent. The most persistent message in the Soviet iconography of disability was ‘whoever who does not work shall not eat’, a political idea that legitimized the social exclusion of different groups. People with childhood impairments, mental health concerns and ageing bodies were excluded from the military and labour heroics of Soviet disability discourse. State control and isolating forms of care provision increased during the Soviet period so that by the 1960s there was little chance for disabled people to be economically independent. Posters and films displayed a general suspicion of disabled people as irresponsible spongers along with traditional connotations of victimization, pity and heroism. While the state continued to present itself as a generous and responsible provider throughout the stagnation years, a sense of rebellion and liberation emerged in underground literature until the idea of ‘disability rights’ broke through in the years of perestroika. Powerful messages were attached to and detached from disability in the long and non-linear process of shaping the value system of state socialism only for this imaginary map to be redrawn in line with the dynamics of post-Soviet bureaucracy, human rights and the free market. The elaboration of universal cultural codes was important for developing an ‘imagined community’ of Soviet people. The official images of Soviet society were challenged during perestroika and after the dissolution of the Soviet Union, when disabled people became one of the ‘problematic’ social groups that questioned the prevailing social situation. Disabled characters then appeared not only as metaphors of heroism, suffering and objects of state care, but also as symbols of protest against the inequity of society and power. The representation of disability became symptomatic of society’s changing self-perception by encompassing metaphors of protest, resistance and human rights that heralded the end of top-down control in relation to society, disabled people and visual imagery.

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Notes 1 The authors thank Michael Rasell for important editorial work and recommendations, and Frances Bernstein for valuable comments. This study comprises research findings from the project supported by the John D. and Catherine T. MacArthur Foundation. 2 The Grand Style – also known in art history as Grand Maniere – is an imposing combination of elements of classicism and baroque that developed in seventeenthcentury France and represented ideas of absolute power, national integrity and prosperity.

References Alaniz, J. (2007) ‘Cinema without barriers. Disability in Russian cinema: some tropes’, Kinokultura, 16. Available at www.kinokultura.com/2007/16-alaniz.shtml (accessed 7 August 2010). Alexopoulos, G. (2006) ‘Soviet citizenship, more or less: Rights, emotions and states of civic belonging’, Kritika: Explorations in Russian and Eurasian History, 7(3): 487–528. Barnes, C. (1992) Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People. Halifax: Ryburn. Bauman, Z. (1998) Work, Consumerism and the New Poor. Buckingham: Open University Press. Bonnell, V. (1997) Iconography of Power: Soviet Political Posters under Lenin and Stalin. Berkeley: University of California Press. Bulgakova, O. (2005) Fabrika zhestov [The factory of gestures]. Moscow: NLO. Chivers, S. and Markotic, N. (2010) ‘Introduction’, in S. Chivers and N. Markotic (eds) The Problem Body: Projecting Disability on Film. Columbus: Ohio State University Press, pp. 1–10. Dashkova, T. (2008) ‘Granitsy privatnogo v sovetskikh kinofilmakh do i posle 1956 goda. Problematizatsiya perekhodnogo perioda’ [The limitations of privacy in Soviet films before and after 1956. The problematization of the transition period], in SSSR: Territoriya lyubvi [The USSR: The territory of love]. Moscow: Novoe Izdatel’stvo, pp. 146–69. Decree of the People’s Committee of Social Welare [Postanovlenie Narodnogo Komissariata sotsial’nogo obespecheniya (NKSO)] of 26 May 1923, available at http:// lawrussia.ru/texts/legal_861/doc861a649x930.htm. Deleuze, G. (2004) Logic of Sense. New York: Columbia University Press. Diehl, C. (2008) ‘The empty space in structure. Theories of the zero from Gauthiot to Deleuze’, Diacritics, 38(3): 93–119. Dobrenko, E. (2007) Political Economy of Socialist Realism, trans. J.M. Savage. New Haven: Yale University Press. Dunham, V. (1989) ‘Images of the disabled, especially the war wounded, in Soviet literature’, in W.O. McCagg and L. Siegelbaum (eds) The Disabled in the Soviet Union: Past and Present, Theory and Practice. Pittsburgh, PA: University of Pittsburgh Press, pp. 151–66. Dunn, E. (2000) ‘Disabled Russian war veterans: Surviving the collapse of the Soviet Union’, in D. Gerber (ed.) Disabled Veterans in History. Ann Arbour: The University of Michigan Press, pp. 151–71. Edele, M. (2009) Soviet Veterans of World War II: A Popular Movement in an Authoritarian Society, 1941–1991. Oxford: Oxford University Press. Fefelov, V. A. (1986) V SSSR invalidov net! [There are no invalids in the USSR!]. London: OPI.

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Ferro, M. (1992) ‘Does a Film Writing of History Exist? The Case of the Soviet Union’, in A. Lawton (ed.) The Red Screen: Politics, Society, Art in Soviet Cinema. New York: Routledge, pp. 315–22. Fieseler, B. (2005) ‘The bitter legacy of the ‘Great Patriotic War’: Red Army disabled soldiers under late Stalinism’, in J. Furst (ed.) Late Stalinist Russia: Society between Reconstruction and Reinvention. London and New York: Routledge, pp. 46–61. Fitzpatrick, S. (2006) ‘Social parasites. How tramps, idle youth, and busy entrepreneurs impeded the Soviet march to communism’, Cahiers du monde russe, 47(1/2): 377–408. Foucault, M. (2003) ‘Governmentality’, in P. Rabinow and N. Rose (eds) The Essential Foucault: Selections from Essential Works of Foucault 1954–1984. London: The New Press, pp. 229–45. Gallego, R. (2006) White on Black, trans. Marian Schwartz. Orlando, FL: Harcourt, Inc. Golovskoy, V. (1992) ‘Art and propaganda in the Soviet Union, 1980–5’, in A. Lawton (ed.) The Red Screen: Politics, Society, Art in Soviet Cinema. New York: Routledge, pp. 264–74. Grigely, J. (2006) ‘Blindness and deafness as metaphors: An anthological essay’, Journal of Visual Culture, 5(2): 227–41. Guskov, G. (1973) ‘Trud – dlya nas blago’ [Labour is good for us], Sotsial’noe obespechenie [Social provision], 5: 27–29. Hall, S. (1996) Race: The Floating Signifier. Northampton, MA: Media Education Foundation. Hughes, B. (2002) ‘Invalidated strangers: Impairment and the cultures of modernity and postmodernity’, Disability & Society, 17(5): 571–84. Iarskaia-Smirnova, . and Romanov, P. (2009) ‘The rhetoric and practice of modernisation: Soviet social policy, 1917–1930s’ in G. Hauss and D. Schulte (eds) Amid Social Contradictions. Towards a History of Social Work in Europe. Opladen & Farmington Hills: Verlag Barbara Budrich, pp. 149–64. Kaganovsky, L. (2008) How the Soviet Man was Unmade. Cultural Fantasy and Male Subjectivity under Stalin. Pittsburgh: University of Pittsburgh Press. Kak eto bylo [How it was] (2008) Index. File on censorship, pp. 197–213. Kayiatos, A. (2010) ‘Sooner speaking than silent, sooner silent than mute: Soviet deaf theatre and pantomime after Stalin’, Theatre Survey, 51(1): 5–31. Lawton, A. (1992) ‘Introduction. An interpretative survey’, in A. Lawton (ed.) The Red Screen: Politics, Society, Art in Soviet Cinema. New York: Routledge, pp. 1–15. Manning, N. and Davidova, N. (2001) ‘Russia: revolution or evolution?’, in P. Alcock and G. Craig (eds.) International Social Policy. Welfare Regimes in the Developed World. London: Macmillan, pp. 203–20. Michel, S. (1993) ‘Danger on the home front: Motherhood, sexuality, and the disabled veterans in American postwar films’, in M. Cooke and A. Woollacott (eds) Gendering War Talk. Princeton, NJ: Princeton University Press, pp. 260–83. Nagibin, Y. (1982) Buntashnyi ostrov. Moscow: Progress. Phillips S. (2011) Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington: Indiana University Press. Pipes, R. (2001) Communism: A History. New York: Modern Library Chronicles. Raymond, P. D. (1989) ‘Dissidence as disability: the action group to defend the rights of the disabled in the USSR’, in W. O. McCagg and L. Siegelbaum (eds) The Disabled in the Soviet Union: Past and Present, Theory and Practice. Pittsburgh: University of Pittsburgh Press, pp. 236–37. Rieser, R. (2004) Disabling Imagery: A Teaching Guide to Disability and Moving Image Media. London: BFI: Disability Equality in Education.

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Shalamov, V. (1998) ‘Artist lopaty’ [The artist of shovel], in Varlam Shalamov, Kolymskie rasskazy [Kolyma short stories], the collected works in four volumes. Volume 1. Moscow: Khudozhestvennaya literatura, Vagrius. Shapiro, J. P. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: New York Times Books. Snyder, S. L. Mitchell, D. T. (2006) Cultural Locations of Disability. Chicago and London: University of Chicago Press. Spring, D. (1993) ‘Stalinism – the historical debate’, in R. Taylor and D. Spring (eds) Stalinism and Soviet Cinema. New York: Routledge, pp. 1–14. Thomson, R. G. (1997) Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press. Tretii god pyatiletki [The third year of the five-year plan] (1968) in Sotsial’noe obespechenie, No.1: 2–5. Verzhbilovskiy, P. (1932) ‘O merakh bor’by s klassovo-chuzhdym elementom v ryadakh invalidov’ [About measures of struggle against class-alien element among invalids], Sotsial’noe obespechenie [Social provision], 9–10: 28. White, A. (1999) Democratization in Russia under Gorbachev, 1985–91: The Birth of a Voluntary Sector. New York: St. Martin’s Press. Youngblood, D. J. (2007) Russian War Films: On the Cinema Front, 1914–2005. Lawrence: University Press of Kansas.

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Between disabling disorders and mundane nervousness Representations of psychiatric patients and their distress in Soviet and post-Soviet Latvia Agita Lu¯se and Daiga Kamera¯de

Based on the premise that mental illnesses are socially constructed phenomena, this chapter examines their conceptualisation by professionals, the general public and mass media in Latvia during the late Soviet years and the subsequent postSoviet decades.1 We discuss the growing discrepancy between professional and societal understandings of mental health issues, arguing that this divergence is a corollary of two interrelated factors: firstly, the professional ambition of Latvian psychiatrists from the 1990s onwards to assert their familiarity with international disease classifications and treatment methods; and, secondly, the endeavours of major stakeholders to bring Latvia’s mental health policy in line with care models developed in the West. These developments have involved redefining the psychiatric concept of mental disorder to include a significantly broader and more diverse range of phenomena. Psychiatrists now claim expertise not only over explicit, severely disabling and long-lasting varieties of mental distress, but increasingly also over more mundane, transitory and relatively widespread forms of ‘nervousness’. The Latvian public, on the other hand, still tends to associate psychiatry with the stigmatising conceptions and practices of the Soviet period. To make these arguments, this chapter employs data from three studies conducted in Latvia between 2004 and 2008. The aim of these studies was to examine how mental health-care professionals, the general public and mass media conceptualise mental illness in Latvia in the post-Soviet period. The chapter also occasionally draws on ethnographic research that Agita Luse has conducted since 2003 with several Latvian NGOs active in the mental health care field. In presenting these diverse data we intend to identify patterns between these various understandings and the actual circumscription of psychiatry’s borders in Latvia. The structure of this chapter has been organised around this task. We first introduce our theoretical position that mental distress is a social construction and then illustrate this process by sketching how people with psychiatrically defined illnesses were treated in Soviet times. Thereafter we chart the major transformations that

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affected psychiatry and its patients after Latvia regained independence in 1991, focussing primarily on developments during the first decade of the post-Soviet period. Subsequently, the findings of a review of professional literature and two empirical studies are presented in order to map the most significant changes in the ways in which mental illness in post-Soviet Latvia has been constructed and represented by professionals, the general public and the media respectively. We observe that mental capacities, including in relation to emotional well-being, have often been a basis for limiting a person’s rights and opportunities in the postSoviet world because the label of psychiatric disability carries intense state and societal stigma.

Mental illnesses as socially constructed entities As with other fields of disability provision, the distinction between ‘medical’ and ‘social’ approaches to mental health problems provides an important conceptual tool for understanding the development of Latvian psychiatry and mental health services. Internationally the most influential medical classificatory system for mental disorders is undoubtedly the Diagnostic and Statistical Manual (DSM) that the American Psychiatric Association has elaborated over many decades. During the 1990s this document considerably shaped the International Classification of Diseases (henceforth ICD) published by the World Health Organisation (Manning 2001: 85). By translating the ICD into dozens of languages, the WHO promoted the unification and standardisation of diagnostic criteria, including those for mental disorders, throughout the world.2 The Diagnostic and Statistical Manual is based on a medical or disease model that conceptualises disorders as discrete entities (Mechanic 1999: 16). The same holds true for the ICD, which is based on the same classificatory principles as the DSM in that attention is primarily paid to symptoms (Yevelson et al. 1997: 1552). A more detailed account of the ascendancy of the disease model in North American psychiatry can be found in Luhrmann’s book Of Two Minds: An Anthropologist Looks at American Psychiatry (2001). The author notes that a new group of psychiatrists began to emerge in the 1970s who were ‘committed to what they called strict standards of evidence … determined to create a psychiatry that looked more like the rest of the medicine, in which patients were understood to have diseases’ (Luhrmann 2001: 225). One of the main aims of the DSM when it was updated in 1980 was to defend such a medical model. A patient’s personal history became irrelevant: what mattered was that symptoms could be matched to criteria for a certain disorder. As a result, biomedical or biopsychiatric treatment styles in the United States superseded psychodynamic approaches and drug therapies were increasingly prioritised (see also Gold and Olin 2009: 46).3 Although advances in neuroscience and psychopharmacology tend to discuss diagnostic categories as objective realities ‘discovered’ in nature, transcultural psychiatrists and medical anthropologists have argued that these categories are social constructions and have demonstrated how they have been put to social uses (for instance, Kleinman 1988; Ware and Weiss 1994; Young 1995; Skultans

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1995, 1998). Some forms of mental distress have been extremely sensitive to influences from the wider social system. Hacking has argued that the way in which psychopathologies have been classified has always influenced sufferers, both individually in terms of how patients reflect on their condition and treatment and as a group in that classifications inform treatment practices. Being (re)classified thus changes the ways in which individuals experience themselves (Hacking 1999: 104–15). An illustration pertaining to the Latvian context can be found in Skultans’ work. During her fieldwork in Latvia in 1991 Skultans observed that among the most common diagnoses assigned by the Riga emergency ambulance service were: dystonia – a dysfunction of the autonomous nervous system (veg‘etatı¯va¯ distonija in Latvian) – and profound fatigue or neurasthenia4 (neiraste¯nija in Latvian) (Skultans 1995: 16). Both could display themselves in a number of quite diffuse physical and neurological symptoms. Skultans points to an important aspect of these diagnostic categories: they carried no stigma of mental illness since, according to Soviet diagnostic practice, both were classified as physical disorders of the nervous system and not conditions based on mental ill-health. Dystonia,5 in particular, was seen as a condition that anyone could experience as a reaction to an excessive workload or heightened sense of responsibility. Patients, however, resisted the diagnosis of neurasthenia because it had the potential to portray socially engendered unhappiness as weakness of individual physiology (ibid.: 17). Now, what made it possible for doctors to align their diagnoses with patients’ wants and choose a particular way of construing a range of symptoms? The answer can be found by examining the distinctive classificatory principles of Soviet psychiatry. From the late 1950s onwards consecutive editions of the ICD (7, 8 and 9) were available throughout the USSR in Russian translation. Nonetheless, Soviet psychiatrists used a terminology quite different from that of their colleagues in the West and their practice was actually guided by a different classification system of mental disorders (Skultans 1995; Yevelson et al. 1997; Skultans 1998; Skultans 2003: 2425). This system was based on an approach that sought to establish a clear relationship between a symptom and its cause or ‘aetiology’ (Yevelson et al. 1997: 1552). Although some sections of the WHO official classifications were slightly altered in the respective Soviet editions, this attempt to link them to Soviet diagnostic practices appears to have been little more than an exercise in interpretation, mostly driven by the need to facilitate research cooperation with mental health professionals from the West (ibid.: 1551). A significant feature distinguishing the perspectives of Soviet doctors on mental distress was the division between so-called major and minor psychiatry.6 At the basis of this division were two respective subfields of mental health care. Major psychiatry was by and large concerned with psychotic illnesses7 and practised in psychiatric hospitals. In contrast, minor psychiatry focused on neurotic complaints8 that were called ‘nerves’ (nervi in Latvian) or ‘nervousness’ (nervozita¯te) in popular usage and most often treated in polyclinics, especially in neurological units, as well as by the emergency ambulance service (Skultans

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1998: 182). Minor psychiatry could hardly be regarded as a less medicalised approach than major psychiatry since both were equally interested in the manipulation of neurophysiological processes. It is noteworthy that neurology and psychiatry were largely overlapping fields in the USSR, hence the frequent use of the terms psycho-neurology and psycho-neurological to denote categories of symptoms, administrative entities and medical specialisations: an American researcher in the 1950s observed that, ‘A neurologist is also a psychiatrist and the psychiatrist is, for the most part, also a neuropathologist’ (Field 1960: 281). At the same time, neuropathologists were more likely to treat what were called ‘nervous diseases’ while psychiatrists worked with ‘psychic disturbances’ or psychoses (ibid.: 282). In this respect, ‘minor psychiatry’ appeared as a field in which psychiatrists may have dealt with cases that they did not regard as belonging to their proper field of expertise. The WHO’s Classification of Diseases appeared for the first time in an official Latvian translation in 1996, when the ICD-10 was published in Riga. As with earlier Soviet translations, the introduction of a new terminology and classificatory principles did not change practices overnight. After four decades of being integrated into the Soviet mental health care system, certain institutional arrangements and diagnostic practices for dealing with mental distress had become entrenched in Latvia. Western diagnostic practices were only gradually adopted as mental health specialists in Latvia retrained and new pharmacological treatments became available. These transformations have inevitably involved changes in the representation of mental illness, not only among psychiatrists, but also among the general public and mass media, as will be discussed in the following sections of this chapter.

‘Partially or completely incapable of work’: mental illness and disability in Soviet times In 1980 a Soviet official exclaimed that ‘there are no disabled people in the USSR!’ when a Western journalist enquired whether the Soviet Union would participate in the first Paralympic Games (Fefelov 1986). This incident summed up the situation of mentally and physically disabled people in the Soviet Union, including in the Soviet Republic of Latvia: their apparent invisibility was created by practices, if not official policies, of social exclusion and stigmatisation (Dunn and Dunn 1989). Compared to practices in pre-Soviet times or in other European countries, Soviet medicine and psychiatry introduced few innovative approaches to widespread forms of human distress. Throughout most of Soviet history, the state apparatus thus subscribed to physiological and functional models of physical illness, mental disorders and disability. These models focused on the corporeal manifestations of illness and individuals’ ability to work (cf. the contributions by Beate Fieseler and Darja Zaviršek in this volume). Both illness and disability were seen in a narrow and medical way as physiologically based deficiencies or the loss of bodily functions (McCagg 1989). Except for the first decade after the

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Second World War (Merridale 2000) the dominant trend in Soviet psychiatry was the elaboration of biological understandings of mental illness inherited from German psychiatry of the late nineteenth and early twentieth centuries. Disability, called invalidnost’ in Russian (from Latin invalidus, weak), was defined in the USSR as ‘a condition of an organism (organizm in Russian) transformed by disease or aging and characterised by enduring or irreversible functional disturbances that results in the permanent or prolonged, complete or partial, loss of one’s ability to work’ (Vved’enskiy 1959a). It is noteworthy that in the Soviet definition it was not even a person, but just a body or organism, which suffered damage. Such an understanding of disability was based on the ideological premise that physical health and productivity were crucial preconditions for social participation. An individual was seen first of all as a body capable of performing certain functions that not only ensured its reproduction, but could also be organised as productive activity for the good of society. Consequently, one’s inability to work not only meant classification as an invalid, a weak and inefficient being, but also as lacking a basic attribute that a member of Soviet society was expected to possess, namely productivity. The vast majority of Soviet psychiatrists adhered to these physiological and functional models of illness and disability.9 Moreover, until the 1980s, they were primarily concerned with psychotic diagnoses that fell into the domain of ‘major psychiatry’, such as schizophrenia, manic-depressive psychosis and alcoholrelated psychoses. The entry on ‘mental illnesses’ in an encyclopaedia for the general public published in the late 1950s in fact treats mental illnesses and psychoses (psikhicheskie bolezni and psikhozi in Russian) as synonymous (Vved’enskiy 1959b). The leading Soviet school of psychiatry, the Moscow school, focused on the concept of psychosis while neuroses attracted much less attention (Eglı¯tis 1997: 89, 92). Indeed, the whole range of neuroses largely existed within the sphere of neurologists’ expertise due to the impact on Soviet medical science and clinical practice of an ideologised form of Russian physiologist Ivan Pavlov’s teaching on higher nervous activity as well as most doctors’ unfamiliarity with psychoanalytical concepts. As physiologically understood conditions, neuroses had little chance to be associated with mental illness, then the proper subject matter of psychiatry. Nor were neuroses among the categories that the general public in Soviet Latvia and other Soviet republics considered as health problems of a psychiatric kind. Even chronic sufferers from ‘neurological’ forms of mental disorders managed to adapt to a variety of social and vocational roles and their neuroses usually did not serve as the basis for a diagnosis of disability. Psychoses, on the other hand, were understood as more severe and persistent mental disturbances, marked by certain symptoms that were to be treated primarily and fundamentally by medical means – not only with psychotropic drugs, but also by such procedures as prolonged sleep (induced by barbiturates or weak electrical current), electro-convulsive therapy and only occasionally by hypnosuggestive therapy (Cohen 1989: 58–59, Lu¯se 2006: 99–102). Some non-biomedical means, however, were also recognised, work therapy being the most widespread

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among them (Cohen 1989: 60; Lu¯se 2011; Yankovsky 2011) and individual psychotherapy being another occasional exception. The association of mental health concerns with individual shame and inadequacy developed in part because seeking a psychoneurologist’s help in the USSR usually involved ‘being listed’ (nona¯kt uzskaite¯ in Latvian, postavlen na uchet in Russian) on a Psychiatric Case Register. Registered patients were not permitted to travel abroad, take up certain types of employment and in some cases even to drive a car (Pilgrim and Rogers 1999: 178). Moreover, being listed could also become known to colleagues, bosses, neighbours or other citizens, the majority of whom regarded mental illness as not only irreversible and untreatable, but also dangerous. At the level of Soviet ideology, people with disabilities of any kind were perceived as a threat to the state-cultivated image of happy and productive Soviet citizens. Therefore they were likely to be kept out of public sight and treated in psycho-neurological hospitals (Kikkas 2001).10 Thus one can speak of two forms of stigma affecting psychiatric patients in the Soviet Union, one ensuing from cocitizens’ stereotypes and another rooted in official ideology. Given such attitudes many people preferred to seek informal or private help if they felt mentally distressed, especially if they had symptoms of a non-psychotic kind (Cohen 1989: 53–54).11 Patients or their relatives found ways to circumvent the routine medical referral system by obtaining an unofficial appointment with a respected doctor through informal networks, very much like practices in other sectors of the Soviet ‘economy of favours’ (see Ledeneva 1998). The institutional organisation and legal procedures underlying psychiatric care in the Soviet Union were predominantly oriented towards patients whose symptoms suggested a disturbance of a psychotic kind. If an individual with mental health problems came or was accompanied to a district health centre (called poliklinika in Russian), he or she would be referred to an outpatient psycho-neurological dispensary (dispanser in Russian, a word that has been adapted from French dispensaire).12 Dispensaries differed from polyclinics in that apart from offering treatment they also prevented registered patients from avoiding treatment and supervised the circumstances of patients’ life and work (Je¯ra¯ns 1984: 126). The rationale behind this system of treatment and control was to ensure that patients could participate in the productive processes of Soviet society in between periods of illness. At a dispensary an individual with a mental health problem could see a psychiatrist who would prescribe drugs or refer him or her to a specialised psycho-neurological hospital. Those who were employed at the time, but whom the dispensary doctor deemed to be not well enough to work, could take sick leave. After four months of sick leave and before a person with mental health concerns had been absent from work for more than five months within a year, he or she had to be referred to a Commission of Medical-Vocational Expertise, commonly known by its Russian abbreviation VTEK (Minyajev 1987: 298–301). The Commission’s function was to assess if the particular illness had decreased the individual’s ‘ability to work’ to the extent that he or she had to be categorised as either only ‘partially capable’ or ‘completely incapable’ of work and thereby

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certified as a disabled person (invalid in Russian). Depending on how severe the symptoms appeared to the Commission, a person was assigned one of three categories – officially called ‘groups’ – of disability (gruppa invalidnosti in Russian). The resulting disability certificate had to be regularly renewed once a year for the second and third groups and once every two years for the most serious diagnoses belonging to the first group (Vved’enskiy 1959a). Some psycho-neurological disorders did qualify an individual for permanent disability status, but few mental illnesses in the proper sense of the word were included in this list. Thus, according to a regulation issued by the USSR Ministry of Health in 1956,13 most of the 12 psycho-neurological conditions that would qualify an individual for such a status were the outcome of physical damage to either the brain or central nervous system. Only two diagnoses would have fallen into the narrower field of psychiatry: ‘post-schizophrenic feeblemindedness’ (slaboumiye, literally ‘a weak mind’ in Russian) and ‘epilepsy when accompanied by frequent seizures and explicit feeblemindedness’.

Discovering patient rights: post-Soviet perspectives on psychiatric disability During the early 1990s, Latvia and other ex-Soviet countries experienced enormous socio-political and economic changes, regaining independence as the collapse of the state-controlled economy led to high levels of poverty, unemployment and increasing inequalities. The situation of disabled individuals and people diagnosed with mental disorders changed very slowly due to an absence of political goodwill and a resulting lack of resources in the public health sector (Tomov et al. 2007). During the first post-Soviet decade a number of disability rights advocates, mostly sponsored by foreign non-governmental organisations, began to promote a social model of disability in formerly socialist countries including Latvia. According to the social model of disability, most barriers that mentally and physically disabled people experience in their everyday life stem not from their physical impairments or functional limitations, but from discrimination and prejudice towards them in society (Gignac and Cott 1998; Barnes et al. 1999: 30). Mental disability rights advocates in Latvia consequently focused on reducing discrimination and prejudice among the general public. Among the first steps in this process were the promotion of community-based mental health care and the critique of institutional care that was still taken for granted by many health administrators and, consequently, relatively better financed (see, for instance, Leimane 2001; Celms 2005; Leimane-Veldmeijere and Veits 2006; LeimaneVeldmeijere and Šulce 2008). From the late 1990s onwards, a number of representatives from the Latvian Psychiatric Nurses’ Association as well as a dozen reform-minded psychiatrists have collaborated with the Latvian Centre for Human Rights and Ethnic Studies and the Resource Centre for People with Mental Disability, ‘Zelda’, the two leading advocacy organisations for mental health patients in Latvia.

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Although the social model of disability has been popular among activists promoting the rights of people with disabilities, including those based on a mental health problem, achievements have been very slow. Although some day care centres currently operate in the capital city Riga and larger towns of Latvia,14 thousands of people with psychiatric diagnoses still spend their lives in institutions,15 mostly in care homes or secluded at home.16 Latvia has signed and ratified the UN Convention on the Rights of Persons with Disabilities as well as its special protocol (see Lu¯se 2009), but the necessary amendments in law have not been implemented and few politicians have a clear vision of or interest in the ways in which the Convention should be implemented in real life.17 Indeed, a draft law On Psychiatric Assistance has been in preparation since the 1990s, but its adoption has been repeatedly postponed. After joining the European Union in 2004 Latvia, like other new member states, was expected to design its mental health policy ‘to support action based on evidence, to promote prevention and appropriate treatment of mental disorders, to aid access to treatment and the integration of people with mental disorders into society’ (Marusic 2004: 450; see also Knapp et al. 2007). However, the persistence of treatment in institutions, hesitation over effective preventive measures and the slow progress of social inclusion for people with mental illnesses suggest that physiological and functional models of mental health and disability are still strongly dominant in Latvia. To explore conceptualisations of mental health in Latvia, we now will present the results of our review of professional literature and two empirical studies.

‘Minor psychiatry’ comes to the aid: easing the neurologists’ workload Our analysis of literature aimed at mental health professionals in the Soviet and post-Soviet periods suggests that the definition of mental illness used by Latvian psychiatrists has been expanding since the late 1970s through the inclusion of mental disorders that used to be seen as within the competence of neurologists, namely psychosomatic and neurotic disorders. By the mid-1980s the number of people living with psychotic disorders had reportedly stabilised whereas the number of registered non-psychotic or ‘borderline’ disorders was growing in Latvia (Shirin and Malakhov 1985; Sochneva and Liepinsh 1985) as well as Estonia and Russia (Mehilane 1985; Severniy 1985). For example, a study conducted in Estonia between 1970 and 1984 demonstrated that neuroses constituted 16.8 per cent of all psychiatric illnesses (Mehilane 1985), which suggests that such conditions were recognised by psychiatrists. In particular, it was acknowledged that ‘long-standing neuroses are responsible for the psychogenic development of the personality that could subsequently result in the need for prolonged hospitalisation’ (Mehilane 1985: 353–55). Of all neuroses, their hypochondriac and depressive sub-types were most frequently reported. From 1978 onwards, the concept of psychosomatic illness was promoted among Latvian psychiatrists and doctors of other specialities (Eglı¯tis and Sochneva 1979). At about the same time,

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a group of psychiatrists in Latvia came forward with a preventative initiative, namely ‘psycho-hygiene clubs’, which invited members of the general public to popular lectures on psychological distress, alcoholism and even the occasional demonstration of hypnosis and auto-suggestion techniques. Neuroses were thus gradually reclaimed as an area of expertise belonging to psychiatrists rather than neurologists (Eglı¯tis 1979). Following the restoration of the country’s independence in 1991, intensive contacts with colleagues in the West as well as the increasing accessibility of contemporary psychiatric literature were additional stimuli for the revision of psychiatric reasoning in Latvia. Once Western training programmes in psychotherapy had been introduced, psychodynamic and psychosomatic concepts could further evolve in Latvian psychiatry. Mental health practitioners increasingly focused on disturbances that could be interpreted as psychogenic or sociogenic in origin (that is reactive conditions as distinguished from endogenous ones which reportedly stem from brain disorders; see more on this distinction in Busfield 2002: 152–56). In 2004 a group of privately practising psychiatrists offered, with the help of psychotherapists and psychologists, to ‘dismantle the fence’ that in their view still segregated people with mental disorders in Latvian psychiatric hospitals. Such an appeal can be seen as challenging the habit, inherited from the Soviet period, of dividing psychiatry into ‘minor’ and ‘major’ components. That fence, the group claimed, instilled a fear of psychiatry in the general population and hindered people from utilising psychiatric help as ‘an adaptive means towards the achievement of mental comfort’.18 Such emphasis on ‘mental comfort’ proposed by psychiatrists in Latvia echoes a neo-liberal ideology (Rose 1998; Furedi 2004) that favours individual self-mastery. Mental health specialists have thus come to view difficulties in controlling one’s mental and emotional states as deviations from the ‘normal’. The borders between minor and major psychiatry may have been eroded in clinical ideology, but a hierarchical relationship between the two still remains in Latvian health-care policy and practice. For example, the state funds medication and subsidises treatment expenses only for those diagnoses that have traditionally fallen within major psychiatry’s expertise and whose sufferers are usually regarded as potentially dangerous to themselves and society. Responsibility for ‘self-mastery’, ‘mental comfort’ and employability rests with individuals: they are expected to invest their own means in sustaining or improving their mental health, for example with the help of private-sector psychiatrists. Ultimately mental health issues are not fully accepted as legitimate concerns within the health and welfare systems, pointing to a discrepancy between the definitions used by psychiatrists and those circulating in policy circles.

‘Sheer otherness’: representations of mental illness in Latvian society19 In order to analyse the fit between professional and societal attitudes about mental health in Latvia, understandings of mental illness in the general public were studied using focus group interviews in 2004. The sample for this study was

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formed of 41 individuals in the age range 16–62 who read newspapers or magazines at least once a week and who had no direct experience of interacting with persons with mental disability or illness. The vast majority of focus group participants named the media as their primary source of information on mental health issues, emphasising that they wanted to know more about these issues, but that information is not readily available. A purposeful sampling method was used to obtain a sample that covered a wide range of demographic characteristics and levels of media usage to ensure broad representativeness and a diversity of views. All participants were divided into five mixed groups and a focused interview was conducted with each group. The agenda for interviews contained three main topics: firstly, general representations of people who are diagnosed as mentally ill (psihiski slims in Latvian) and attitudes towards them; secondly, sources of information on mental illnesses (psihiska¯s slimı¯bas in Latvian) and the media’s role; finally, attitudes towards the social inclusion of people with mental illnesses (cilve¯ki, kas slimo ar psihiskaja¯m slimı¯ba¯m, in Latvian). Each focus group lasted around one-and-half to two hours. The data from the focus groups were analysed using grounded theory techniques (Glaser and Strauss, 1967; Strauss and Corbin 2008). The study found that mental illness is still viewed in Latvia as sheer ‘otherness’ that manifests itself as socially unacceptable behaviour and excessively emotional utterances or even thoughts, but not as emotional disturbance and suffering. The general inadequacy attributed to people with mental illness was described as ‘something that is not as it’s supposed to be’ (female, age 35)20 and ‘strange and different’ (male, 24). Unusual verbal expressions like ‘talking to oneself’ (female, 32) and ‘singing without a reason’ (female, 57) were also considered symptoms of mental illness (psihiska slimı¯ba in Latvian). Similarly, behaviour that was perceived as implausible or laughable was classified as a sign of mental illness, widely described as ‘madness’ (va¯jpra¯tı¯ba in Latvian), for example ‘when an old lady claims that she will become the next president of Latvia and organises an election campaign in a shop’ (female, 19). Moreover, even people whose opinions either differ from the majority or who are critical of majority beliefs were perceived as having mental problems. For example, ‘when somebody always has strange ideas, not like a normal person, you often start to think that he is mentally ill’ (male, 27) or ‘people whose opinions always differ from what most people would think’ (female, 35). Beyond unusual behaviour, mental health problems were associated with externally observable emotional instability such as ‘mood swings’ (female, age 35) or ‘nervousness’ (female, 57), which were repeatedly mentioned by research participants. Another inadequacy often used by members of the general public to define mental illness was an inability to control oneself as well as a perceived dangerousness to others that allegedly arises from the absence of self-control. Individuals who are diagnosed as mentally ill were described as ‘aggressive, able to harm themselves and others’ (female 44), ‘dangerous because they are aggressive’ (male, 27), and it was suggested that it is ‘better to keep away from them because they are dangerous’ (male, 16). Moreover, interviewees often remarked

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that people who are diagnosed as mentally ill ‘cannot be left without supervision’ (female, 61) because they can cause danger to themselves or others, for example, ‘can leave gas switched on’ (female, 44) or ‘if not supervised, they can set the home on fire’ (male, 21). Overall the focus groups thus tended to distance themselves from people with health concerns, who were associated with an inability to follow social norms and related hazards. In relation to support for mental health, the focus group participants expressed strong reluctance to approach professionals for help when encountering mental problems. For the general public, this hesitance is based on the related fears of being classified as abnormal (nenorma¯ls in Latvian), mentally ill (psihiski slims in Latvian) or mad (traks in Latvian) and thus being stigmatised. Mental illness and visits to mental health care professionals were associated with shame and fears of being excluded from society. Thus ‘a visit to a doctor is shameful, [it’s] better to try to solve this problem on my own’ (male, 25) and ‘like going to a sex-shop, it is shameful to go to see a psychiatrist’ (female, 43). Due to its association with abnormality, mental illness was identified with shame: ‘it is shameful because others do not have such an illness’ (female 59). In addition to shame, people were afraid of being stigmatised (‘once you have been in a psychiatric hospital, you are lost’ (male, 24) and ‘you are going to be labelled for all your life’ (female, 44). As a result of stigma, people are afraid of being excluded from society and losing friends and employment: ‘they [friends] will not ask you out anymore and won’t be friends anymore’ (male, 21), ‘people will avoid me’ (male, 24), ‘you are going to be fired from work … they will find an excuse to do so’ (female, 37) and ‘you won’t be able to find a job’ (male, 47). Moreover, it seems that knowledge of non-biomedical treatments for mental health problems has not yet fully reached the general public in Latvia, as the focus group participants expressed strong concerns about the methods used in mental health care, focusing mainly on treatment with medicines: ‘I am afraid of psychiatrists because I don’t know what they will do to me’ (male, 54). Treatment with medicines was perceived as being more harmful than helpful: ‘The medicines are going to make it worse and worse’ (male, 55). Moreover, the general public expressed strong fears about approaching mental health professionals due to concerns about being isolated in hospitals – ‘I am afraid that I will be locked in a home for crazy people’ (male, 21) – and being included in official registers of mental health care patients: ‘people are afraid of being included in the register’ (female, 35). In summary, the focus group study suggests that the general public in Latvia defines mental illness entirely in external (behavioural and observable) terms, emphasising the inadequacy of people with mental health concerns and their deviance from widely agreed social norms. The results also indicate that mental ill-health and visits to mental health professionals are associated with stigma and fears around treatment. The fact that most participants identified the media as their main source of information about mental health issues suggests that media portrayals of people diagnosed with mental illness and mental health issues might play a crucial role in informing and shaping attitudes towards mental health issues in Latvia.

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Stories about people with mental illness: changes in media representations Numerous studies have demonstrated that the media is the main source of information on mental health issues in many countries, not only forming individual understandings of mental health and illness, but also shaping societal attitudes towards people with mental health issues (for example, see reviews by Edney 2004; Klin and Lemish 2008; Wahl 1995). Thornton and Wahl (1996) found that people who had read a newspaper article about a person with mental health concerns who had committed a murder demonstrated a significantly more negative attitude towards people with mental illnesses than individuals who had not read the article. A similar effect was observed by Wahl and Lefkowits (1989). Moreover, as studies conducted by Philo et al. (1996) indicate, the mass media has a more powerful effect on individuals’ attitudes than their own positive personal experiences. To examine how media representations of mental health and illness are changing in Latvia, content analyses of all publications in a representative sample of 15 magazines and newspapers published in Latvia between 6 May and 6 June (a randomly chosen month) were conducted in 2004 and 2008. It should be noted that Latvia joined the European Union in May 2004 and was thus increasingly exposed to inclusive approaches and attitudes to mental health.21 Printed mass media were chosen because according to the Baltic Media Facts (BMF) (2004), they are the second most commonly used media in Latvia.22 The sampling frame for the content analysis was formed from a list of all 262 regularly published printed press titles in Latvian and Russian. Highly specialised titles with a low probability of discussing mental health topics were excluded, for example free advertising newspapers and magazines about cars or handicrafts. A stratified probability sampling method based on readership and national/regional publication was used to select publications for analysis. Around 25 per cent of regional and national titles were selected. The selection resulted in a total sample of 15 titles. All issues of the selected magazines and newspapers published between 6 May and 6 June in 2004 and 2008 were examined for pieces related to mental health or illness (news, reports, advertisements, anecdotes, interviews etc.). In the first step, all relevant articles were coded quantitatively using a codebook developed for this purpose. The articles on mental health were then analysed qualitatively using a grounded theory approach to identify the messages that appeared in texts without prior assumptions about the themes that could arise. Comparison of the content analyses for 2004 and 2008 indicates that although mental health issues were rarely covered in magazines and newspapers, there were encouraging signs of a positive change – albeit slow and subtle – in the way mental health issues and people with mental disorders were portrayed by Latvia’s print media. As in Soviet times, when neither individuals diagnosed as mentally ill nor mental health issues were present in the public sphere and public discourse, they also rarely received any attention from the Latvian press in 2004

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and 2008. In 2004 and 2008 only six newspapers or magazines published at least one piece on mental health issues during the month of May/June. Overall 24 items were devoted to mental health issues during this period in 2004 while 26 mental health-related items were identified in the May/June period in 2008. Although there was no significant quantitative difference between the periods, there were important changes in the content and origin of mental health journalism. In 2004 information on mental health issues in general and mental disorders in particular was very scarce in newspapers and magazines while in 2008 reporting on mental disorders, their possible causes and treatment was more precise and coherent. In 2004, the only item that discussed the causes of mental disorders attributed them to life events like relationship difficulties: ‘after a relationship has finished, women can switch more easily [than men] to other things, thus avoiding depression and mental disorders’ (an excerpt from a weekly newspaper in Latvian, 2004). Another explanation of mental illness was to be found in an advertisement for nutritional supplements in a monthly newspaper (2004). It was phrased in biomedical terms and claimed (in Latvian): ‘Does depression start in the brain? Sometimes the problem comes from the glands.’ The printed press gave little information about the treatments available to people with mental illnesses. One monthly women’s magazine in Latvian published a report by the relatives of a well-known poet living with depression, describing how in the 1970s ‘psychiatrists doped her with strong medicine’. They told the magazine that ‘this medicine made her unable to write poems and even incapable of understanding the simplest plots on television’. An advertisement in a weekly newspaper in Latvian promoted a psychic healer ‘who can cure depression’ among other illnesses and ailments. Information on the causes of mental illness was more extensive and coherent in the Latvian press of 2008, mainly because newspapers and magazines increasingly published articles written or consulted upon by mental health care specialists. These quantitative and qualitative changes in media representations of mental health and illness seem partly to be the result of public relations strategies elaborated by various organisations to which psychiatrists are affiliated, such as hospitals, university departments, professional associations, pharmaceutical companies and sections of the Public Health Agency.23 The editors of printed media in Latvia were increasingly seeking sources of information that would be seen as more trustworthy and reliable by their readers. Mental health professionals may also have been increasingly likely to approach the media as a way of informing the general public on mental health issues. In 2004 journalists authored around half the articles published while doctors, generally not specialists in mental health care, contributed to three articles. Only in one case was a 2004 publication written by a mental health care professional. In the remaining articles, the occupation of the writer could not be determined, but were most likely to have been written by journalists. By 2008, the proportion of editorial items about mental health issues written by journalists had slightly decreased and the proportion by mental health care specialists had increased significantly, from a

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very small initial sample. As a result, three articles discussed the possible medical (biological) and social causes of mental illness at length, all written by psychiatrists. It should be emphasised, though, that more than half of the space in all articles was devoted to the biological causes of mental illness and much less to social factors. Mental health care specialists thus continued to promote a predominantly physiological and functional model of mental disorders. At the same time, neither in 2004 nor in 2008 did newspapers and magazines contain any useful information related to state support for or the legal status of people with mental health issues, for example details on which mental illnesses qualify for disability status or benefits. Another finding is that the attitudes towards people with mental health issues expressed in magazines and newspapers grew increasingly polarised between 2004 and 2008. During this time the proportion of media articles displaying a positive or favourable attitude towards people with mental health issues increased, but so did the proportion of publications conveying an explicitly negative stance. Not surprisingly, tabloids were more likely to express negative attitudes towards people with mental health issues. While three-quarters (in both years) of publications in weekly broadsheet newspapers and slightly less in daily newspapers had a positive attitude, a similar proportion of publications in tabloid newspapers expressed negative attitudes towards people with mental health concerns. When writing about an individual with mental health issues, newspapers and magazines were most likely to refer to him or her as ‘a patient from a psychiatric hospital’ (psihiatriska¯s slimnı¯cas pacients in Latvian, daily newspaper, 2004 and 2008), ‘a psychiatric patient’ (psihiatrijas pacients in Latvian, daily newspaper 2004 and 2008, weekly magazine in 2008) or as ‘mentally ill’ (psihiski slimais in Latvian, daily newspaper in 2004 and 2008). Other labels were used less frequently and included such neutral terms as ‘having serious problems with the psyche’ (monthly magazine in Latvia, 2004) or ‘being deeply depressed’ (monthly magazine in Latvian, 2004) as well as negative terms like ‘mentally ill deceiver’ (psihiski slims kra¯pnieks in Latvian, weekly magazine in Latvian in 2004), ‘mentally defective’ (garı¯gi nepilnı¯gais in Latvian, weekly magazine in Latvian in 2008), ‘psycho’ and ‘lunatic elderly man’ (both in a daily newspaper in Russian in 2004). In the vast majority of cases in both 2004 and 2008, mental illness was highlighted as a major or dominant characteristic of the person described. Although newspapers and magazines often printed the personal backgrounds of people with mental health issues, portrayals focused on their mental illness and related strange or dangerous behaviour as if these were the only characteristics of these individuals. In 2004, the only additional information, apart from personal details, that was commonly given about these individuals was a detailed description of their supposedly unusual behaviour (e.g. ‘he sang in the cemetery for many years’, daily newspaper in Russian) or the crimes they had committed (e.g. ‘while arguing with another man about politics, he grabbed a knife and stabbed him in the neck’, daily newspaper in Latvian). An exception was the aforementioned article portraying a

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poet living with depression, which gave a detailed description of her life and achievements. Very often, articles emphasised that the offender (usually a man) had been sent to a psychiatric hospital, despite committing a murder, because of their mental illness, rather than being sentenced to serve time in prison. Given the nature of coverage in 2004, it was a major change that stories about people with mental health problems had become more frequent in magazines and newspapers by 2008. Compared to 2004, when the only article related the story of the well-known poet struggling with depression, in 2008 there were three articles about individuals with mental health issues. In addition, there was an important editorial shift between 2004 and 2008, with one article in 2008 including a direct interview with a person with mental health issues. Although this article, which was published in a weekly magazine, focused mainly on the young man’s mental illness, other details of his life, for example educational and professional achievements, were also discussed. Mental ill-health was therefore not presented as dominating identity and life experiences, but rather as part of the wider context of daily life. Two articles in 2004 and three in 2008 discussed the experience of living with mental disorders in Latvian society, emphasising the barriers encountered in daily life. Thus in 2004, an article in a national daily newspaper described how ‘it is still impossible in our country to contest the confinement of an individual in a psychiatric hospital which has happened against the will of this individual. Thus Latvia is violating the European Convention of Human Rights’. The same article emphasised that ‘while there are nine psychiatric hospitals in Latvia and approximately 68,000 registered people with mental health problems; there is only one day care centre for people with schizophrenia based in Jelgava’. The source of this information was a mental disability rights advocate. The three articles in 2008, written by psychiatrists, focused more on the functional limitations that individuals with mental disorders encounter in their lives, such as their purported unsuitability for a range of jobs and inability to hold a regular job or maintain a permanent relationship. Their stance was nonetheless sympathetic to people with mental health issues, who were portrayed as victims of legal and social discrimination. Over time people diagnosed as mentally ill were increasingly less likely to be the subject of ridicule in the Latvian media. After 2004 there was a significant decline in the number of anecdotes about people with mental health issues and an increase in factual editorial coverage. In 2004, mental health was still considered a topic of mirth as almost one-quarter of related items were jokes about individuals with psychiatric illnesses. For example, one daily newspaper in Russian published a supposedly humorous short story about a man called Kerk who reportedly had a mental illness. According to this newspaper, Kerk thought he was a bean and therefore wore only orange clothes and took a bath in baked beans every day. Similarly, a weekly magazine in Latvian published a joke about a man who had been admitted to a mental health hospital: ‘The psychiatrist asks the man: “You like paying taxes. When did it start?”’ In 2008 the proportion of such anecdotes had declined, mainly due to the lower number of jokes about ‘psychiatric patients’

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published in newspapers in Russian. Also in this period the style and focus of coverage of mental health issues increasingly shifted towards features and away from news, perhaps bringing with it a more in-depth examination of mental health issues and less implicit linkage with crime and wrongdoing. It is significant that magazines and newspapers in Latvia have recently begun to publish the life stories of people who use mental health services because it suggests that individuals with a diagnosis of mental disorder are becoming more visible in society and that their voices and stories are being heard.

Concluding discussion This chapter draws attention to the significant discrepancy that has developed in Latvia in recent years between, on the one hand, psychiatrists’ understanding of their professional sphere and, on the other hand, media and societal perspectives on the nature of psychiatric treatment. Since the late 1970s Latvian psychiatrists have increasingly dealt with mundane ‘nervousness’ or relatively less severe disorders such as neuroses, masked depression and other psychosomatic disorders. By expanding their field of expertise, they have been following in the footsteps of their Western colleagues for whom every new version of the DSM has signalled both an enlargement of their clientele and an increase in their professional status. Furthermore, since the 1990s new treatment methods have become available to mental health patients in Latvia, for example psychodynamic psychotherapy, family therapy and advanced pharmacological therapies. Clients have gradually become aware of the new vocabulary with which deep personal distress may now be spoken about and are more frequently turning to professionals whose treatment styles construct mental health concerns in a less stigmatising way. Despite these developments at a professional level, mental health issues and individuals diagnosed with mental disorders are still rarely represented in the Latvian media, although information and reporting has become more detailed and balanced. In contrast, members of the public, as the focus group study presented in this chapter suggests, predominantly see mental illness as a dangerous deviation from social norms. Moreover, it appears that knowledge and understanding about non-biomedical and non-pharmacological treatments for mental disorders are still quite limited among the population of Latvia. The resulting ‘scissors’ effect’, namely the mismatch between mental health professionals’ representations of mental health issues (including those circulating in the mass media) and attitudes towards people with mental disorders on the part of the general public, is very important. It is essential to understand the way in which mental health professionals define what is or what is not a mental disorder or mental illness since such a definition determines how mental health issues are dealt with and whether they are considered a legitimate reason for recognising a person as disabled. As discussed at the beginning of this chapter, psychiatry’s function in Soviet times was basically to treat psychotic disorders. In recent decades, however, psychiatrists in Latvia have faced three types of novel demands.

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Firstly, by increasingly including non-psychotic disorders in their sphere of expertise and paying more attention to prevention they have attempted to improve the public image of their profession that the general public perceived as threatening, not least because psychiatry in the USSR had had considerable power to encroach on patients’ rights and determine their destiny. Secondly, as a profession, over the last 20 years psychiatrists have been expected to adopt their Western colleagues’ categories, vocabularies and practice guidelines (see Lu¯se 2006, chapter 5, for a more detailed account) as well as integrate into international professional bodies. Finally, new psycho-pharmaceutical treatments have made it possible to reduce the number of in-patient hospital stays endured by ‘clients’ of the mental health system so that psychiatrists, along with a number of mental health professions new to Latvia, have to see more outpatients than before. These developments have gradually blurred the difference between what Soviet terminology called ‘major’ and ‘minor’ psychiatry. In some respects the process of broadening the boundaries of psychiatry in Latvia is similar to the transformations that the two world wars initiated in British psychiatry (Rose 1986). As Rose notes, psychiatry increasingly broadened the range of mental illnesses within its remit. However, unlike the British case, the broadening of boundaries of mental health problems and psychiatry in Latvia has not yet led to an explicit policy move away from institutionalised mental health care towards community care. One reason for this seems to be the fact that the general public still prefers to have psychiatric patients locked away because, more often than not, it sees mental illness as a purely biological, irreversible disorder manifesting in aberrant behaviour. Another reason is that deinstitutionalisation would involve the decentralisation of psychiatric care, but establishing community care facilities outside a few large cities has neither been envisioned nor considered affordable within the tight strictures of the country’s social care budget. Whether mental health professionals support or resist the activities and agendas of disability rights advocates largely depends on their understanding of mental disorders. During the last two decades a number of psychiatrists – in particular those espousing a psychodynamic orientation – and most psychologists in Latvia have challenged previous assumptions that mental disorders are genetically based and irreversible conditions. The alliance that has been gradually forming between psychiatric patients’ advocacy organisations, such as Zelda, and an increasing number of mental health professionals suggests that there is an ongoing shift in the ways in which the latter evaluate mental health patients as members of society. The general public’s understandings of mental illness, in turn, facilitate or undermine the initiatives of disability rights advocates and the position that people with mental disorders may have in a community. The findings from this study therefore contribute to a broader understanding of how professional definitions, public attitudes and media representations of mental illness can interact and jointly better or worsen the prospects for dealing with mental health concerns which are, after all, a social and not a medical issue.

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Notes 1 The studies presented in this chapter were financially supported by the Latvian Council of Science and an International Policy Fellowship from the Open Society Institute, Soros Foundation. Parts of this chapter have previously been published under the following title: Lu¯se, A. and Kamera¯de, D. (2011) ‘Redrawing the boundaries of psychiatry and mental illness in the post-Soviet period: the case of Latvia,’ in Szmigiero, K. (ed.) Probing Madness. Oxford: Inter-Disciplinary Press, pp. 55–66. 2 See the WHO webpage on the International Classification of Diseases: http://www. who.int/whosis/icd10/language.htm (accessed 20 October 2010). 3 Psychiatrists in other countries embraced similar approaches as Western models of medical education and research spread to them. In Latvia, the earlier treatment style that was substituted by the DSM model in the 1980s and 1990s was shaped by a psycho-physiological focus on workings of the central nervous system rather than by a psychodynamic approach to human functioning. 4 The term ‘neurasthenia’ was coined by the late-nineteenth century neurologist George Beard for a disease of the nervous system. In 1881 Beard wrote of it as ‘a physical, not a mental state’. Around the turn of the twentieth century it was very widely used to refer to profound fatigue and a range of physical complaints. Research in cross-cultural psychiatry has demonstrated that the diagnosis of neurasthenia enabled patients to legitimise ‘neurotic’ symptoms as ‘real disease’ and thus circumvent the shame and stigma associated with mental distress (Ware and Weiss 1994: 101–03; Kleinman 1988: 100–20). 5 Although dystonia is not included in diagnostic manuals commonly used in the West, one can come across such terms as neuro-vegetative dystonia, vegetovascular dystonia or vascular dystonia in English-language specialist literature. They correspond to clusters of symptoms that earlier versions of ICD classified as Unspecified Disorders of the Autonomous Nervous System and that are partly covered by the group Somatoform Autonomic Dysfunctions in ICD-10 (Yevelson et al. 1997: 1552). 6 The term ‘major psychiatry’ (bolshaya psikhiatriya) came into use in the early Soviet period after the Russian psychiatrist P. B. Gannushkin introduced the concept of ‘minor psychiatry’(malaya psikhiatriya). Gannushkin (1964[1933]) coined the term malaya pskhiatriya to refer to his theory of ‘constitutional psychopathies’. His special interest was inherited personality features that situate individuals on the borderline between mental health and illness. 7 An influential and internationally known psychiatry textbook defines psychosis as the ‘inability to distinguish reality from fantasy; impaired reality testing, with creation of a new reality’ (Kaplan and Sadock 1988: 170). 8 Kaplan and Sadock (1988: 170) characterise neurosis as a mental disorder in which reality testing is intact and behaviour does not violate gross social norms while symptoms are experienced as distressing and unacceptable. 9 There were few exceptions in this respect. Compared with the politically influential Moscow school of psychiatry (discussed later in this section), the Leningrad school placed greater emphasis on individual psychotherapy, mostly consisting of providing the patient with guidance, advice and support (Visotsky 1968: 651). More widespread forms of psychotherapy included hypno-suggestive therapy, autogenic training (most often practised in groups) and autosuggestion (see Segal 1975). 10 The number of psychiatric beds in Soviet Latvia in 1989 exceeded that in Sweden and Finland (Andre¯zin¸ a et al. 1994: 572). There still were 5,085 psychiatric beds in hospitals, equaling 192.4 beds per 100,000 population in Latvia, just after the country had re-established its independence in 1992 (Medicı¯nas statistikas birojs 1992). Only 2,398 of them were left in 2010. Nevertheless even with that reduced number Latvia still has the fourth highest ratio of psychiatric beds per 100,000 population among all European Union countries (Pulmanis et al. 2011).

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11 A number of interviewees mentioned such patterns of help-seeking during interviews that Agita Lu¯se conducted with people living with depression in Latvia. 12 The dispensaire system was introduced by the Soviet state apparatus in 1921 in order to control the population’s health and ability to work. 13 Perechen’ zabolevanii, pri kotorikh gruppa invalidnosti ustanavlivaestsya VTEK bez ukazaniya sroka pereosvidetel’stvovaniya (The list of illnesses for which the Commission of Medically-Vocational Examination assigns a disability group without further reconsideration, in Russian). Available online at http://www.med-pravo.ru/ OthDocum/MLab/ListInvalid1956.htm (accessed 19 October 2010). 14 In contrast to hospital and ambulatory psychiatric care, community care facilities are often seen in Latvia as the responsibility of local governments and/or the Ministry of Welfare rather than the Ministry of Health. 15 For instance, 1,882 adults with a diagnosis of schizophrenia (F20-F29), 325 children with learning difficulties (excluding 656 diagnosed with oligophrenia) and 43 children with a diagnosis of mental illness were institutionalised for long-term care in state and municipal social care homes throughout Latvia on 1 January 2010 (Labkla¯jı¯bas Ministrija 2010). In the capital city alone, there were approximately 400 beds in 2011 for adults (excluding those of retirement age) with a psychiatrc diagnosis and classification in the first or second disability group. See Valsts Socia¯la¯s apru¯pes centrs ‘Rı¯ga’ (The State Social Care Centre ‘Riga’), online at http://www.vsacriga.gov.lv/ (accessed on 26 October 2011). 16 One indicator of the low social inclusion of chronic sufferers from mental health problems is the very low number and highly unstable membership of psychiatric patient associations or self-help groups in Latvia as observed by Agita Lu¯se during her fieldwork in 2003 and 2006. 17 In 2008–10 the global economic crisis diverted the attention of Latvian politicians even further away from the implementation of the UN Convention. 18 Association of Private Psychiatrists, online at http://www.privatpsihiatrija.lv/public/ (accessed 1 August 2008). 19 Research on understandings of mental illness in the general public and on changes in mass media representation of mental health issues was conducted by Daiga Kamera¯de. 20 All quotes from the participants are translated into English from Latvian or Russian. The gender and age of the participant is indicated in brackets. 21 About Latvia’s ambivalent stance vis-a-vis the EU mental health policy objectives see the earlier section of this chapter ‘Discovering patient rights: post-Soviet perspectives on psychiatric disability’. 22 Although the most widely consumed media was television, it was not chosen for analysis because the BMF suggests that people watching television mainly choose films whose selection and content cannot be significantly influenced by mental health advocates. 23 Positions of public relations specialists (alternatively called communication specialists) have recently been introduced in all major hospitals of Latvia, including psychiatric institutions. Latvia’s Public Health Agency (which was reorganised in 2009 but still existed during the period under consideration here) employed PR specialists who may have significantly influenced the way in which the Agency’s experts on mental health communicated with the general public.

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nevrologii, psikhiatrii i neirokhirurgii. II syezd nevropatologov, psikhiatrov i neirokhirurgov Latviiskoi SSR [Current Issues in Neurology, Psychiatry and Neurosurgery. 2nd Congress of Neuropathologists, Psychiatrists and Neurosurgeons in the SSR of Latvia, in Russian]. Riga. Shorter, E. (2006) ‘The historical development of mental health services in Europe’, in M. Knapp, D. McDaid, E. Mossialos and G. Thornicroft (eds) Mental Health Policy and Practice across Europe: The Future Direction of Mental Health Care. Maidenhead: McGraw Hill and Open University Press, pp. 15–33. Siksna, A. (2001) ‘The translation of psychiatric literature’, paper presented at the LatvianSwedish conference ‘Evaluation of Psychiatric Projects between Latvia and Sweden during 10 Years’, Jelgava, 28–31. Skultans, V. (1995) ‘Neurasthenia and political resistance in Latvia’, Anthropology Today, 11: 14–18. Skultans, V. (1998) The Testimony of Lives. Narrative and Memory in Post-Soviet Latvia. London and New York: Routledge. Skultans, V. (2003) ‘From damaged nerves to masked depression: inevitability and hope in Latvian psychiatric narratives’, Social Science & Medicine, 56: 2421–31. Sochneva, Z. G. and Liepinsh, Y. K. (1985) ‘Sostoyanie i perspektivi razvitiya psikhitriachicheskoi pomoshchi v Latviiskoi SSR’ [The current state and developmental opportunities of psychiatric help in the SSR of Latvia, in Russian], in Aktualniye voprosi nevrologii, psikhiatrii i neirokhirurgii. II syezd nevropatologov, psikhiatrov I neirokhirurgov Latviiskoi SSR [Current Issues in Neurology, Psychiatry and Neurosurgery. 2nd Congress of Neuropathologists, Psychiatrists and Neurosurgeons in the SSR of Latvia, in Russian]. Riga. Strauss, A. L. Corbin, J. M. (2008) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 3rd edition. New York: Sage. Taube, M., Mik¸ı¯tis, E¯. and Leišavnieks, I. (2003) ‘Overview of the mental health system in Latvia’, paper presented at the Mental Health Finance Reform Initiative conference, Tallinn, 2003. Thornton, J. A. Wahl, O .P. (1996) ‘Impact of a newspaper article on attitudes toward mental illness’, Journal of Community Psychology, 24(1): 17–25. Tomov, T., Van Voren, R., Keukens, R. and Puras, D. (2007) ‘Mental health policy in former eastern bloc countries’, in M. Knapp, D. McDaid, E. Mossialos and G. Thornicroft (eds) Mental Health Policy and Practice Across Europe: The Future Direction of Mental Health Care. Maidenhead: McGraw Hill and Open University Press, pp. 397–425. Visotsky, H. M. (1968) ‘The treatment system’, American Journal of Psychiatry, 125: 650–55. Vved’enskiy, B. A. (ed.) (1959a) Malaya Sovetskaya Entsiklopediya [Short Soviet Encyclopadia, in Russian], Vol. 3. Moscow: Bolshaya Sovetskaya Entsiklopediya. Vved’enskiy, B. A. (ed.) (1959b) Malaya Sovetskaya Entsiklopediya [Short Soviet Encyclopaedia, in Russian], Vol. 7. Moscow: Bolshaya Sovetskaya Entsiklopediya. Wahl, O. P. (1995) Media Madness: Public Images of Mental Illness. New Brunswick: Rutgers University Press. Wahl, O. P. Lefkowits, J. Y. (1989) ‘Impact of a television film on attitudes toward mental illness’, American Journal of Community Psychology, 17: 521–28. Ware, N. C. and Weiss, M. G (1994) ‘Neurasthenia and the social construction of psychiatric knowledge’, Transcultural Psychiatric Research Review, 31: 101–24. Yankovsky, S. (2011) ‘Neoliberal transitions in Ukraine: the view from psychiatry’, Anthropology of East Europe Review, 29: 35–49.

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Yevelson, I., Abdelgani, A., Cwikel, J. and Yevelson, I. S. (1997) ‘Bridging the gap in mental health approaches between East and West: the psychosocial consequences of radiation exposure’, Environmental Health Perspectives, 105: Supplement 6: 1551–56. Young, A. (1995) The Harmony of Illusions: Inventing Post-traumatic Stress Disorder. Princeton, NJ: Princeton University Press.

6

Living with a disability in Hungary Reconstructing the narratives of disabled students Eszter Gábor

Life stories represent a complex combination of individual and social factors and can reveal both the past perspectives of interviewees as well as their present-day interpretations (cf. Rosenthal 2005). The ‘reconstruction’ of life stories thus provides insight into the processes of identity formation, maintenance and change. This research technique can illuminate the biographical experience of living with a physical or sensory disability and also help to understand how disability is treated a particular society. In this chapter, I discuss the life stories and lived realities of 16 students with one or more physical impairments in three areas (megye) of Hungary. I examine how the students integrate disability and its effects in their lives and biographies, including changes over the life course. I focus on disability-related discrimination and stigmatisation in the context of self-esteem and ascription by others, looking at how these processes are affected by individual biographical experiences as well as collective events such as historical and political developments in Hungary. Although there is no precise medical diagnosis of disability (Kastl 2010: 46ff), many discussions of the phenomenon operate on a medical basis or attempt to explain and even categorize various forms of disability through medical knowledge. Whilst disability is clearly an embodied reality, it cannot be reduced to an individual’s physiology. It is instead important to emphasize that both the functional ability of the body and disability itself are socially constructed concepts and therefore dependent on context (cf. Kastl 2010: 44, Kálmán and Könczei 2002: 82ff). I use the term impairment to refer to the functional limitations of the body whereas disability concerns limitations in societal participation that arise due to impairment. Disability therefore includes society’s reaction to impairment, although it is the impact on individual biographies that most interests me in this chapter. I use my biographical investigation to explore the social processes that disable people with impairments in Hungary.

Historical background During Hungary’s socialist past1 issues such as poverty, unemployment and disability were largely ignored by the country’s politicians since social problems were incompatible with the dominant political ideology of a happy society.

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However, deeply rooted prejudices against people with disabilities in Hungary cannot be traced back to political traditions alone. They also derive from a deficitoriented approach in medical and welfare services that works against social acceptance by positing that people with impairments are ‘abnormal’. Hungarians often classify disabled people according to certain ‘attributes’ to form supposedly homogeneous disability-specific groups, for example ‘the blind’, ‘the deaf’ and ‘wheelchair users’ (in Hungarian: ‘a vakok’, ‘a siketek’, ‘a kerekesszékesek’). This group-based discrimination generates a relationship or ‘figuration’ in society that posits disabled people as ‘outsiders’ and non-disabled members of society as ‘established’ (cf. Elias and Scotson 1965). The core of this established/outsiders figuration is an unequal power balance that permits the ‘established’ to assign members of their own group to socially significant positions. Members of stigmatized ‘groups’ are not condemned by society as ‘inferior’ due to their individual features or shortcomings, but because they belong to a certain group. In the case of Hungarian society, ‘the blind’, ‘the deaf’ and other ‘groups’ of disabled people have been traditionally considered as inferior. Indeed, the term for ‘disability’ in Hungarian – fogyatékosság – is often criticized today for its focus on deficits. Fogyatékosság can be translated as ‘being less’ or ‘being reduced’ and is thus a judgemental and normative term. Although the significant diversity among physically disabled people in Hungary means that they cannot necessarily be called a coherent ‘group’ in a sociological sense (cf. Hillmann 1994: 310f), the similar structural and micro-level discrimination they face permits the analysis of their common experiences. Especially until 1989, but even today, disabled people in Hungary were stigmatized by the isolation and segregation promoted in educational and social policies. Here I draw upon Erving Goffman’s theory of social stigma and stigmatization processes during everyday social interactions. At the centre of this theory is the idea that people with a negatively perceived attribute (stigma) are socially outlawed (Goffman 1963). This means that stigmatized people ‘possess an undesired differentness’ that distinguishes them from ‘those who do not depart negatively from the particular expectations at issue’ (cf. Goffman 1963: 15). An important element of this theory is the routine nature and regularity of such categorization and also its transformation from expectations into normative judgements. This labelling can assist members of society to orientate ‘in social traffic’ and is a process that happens unconsciously: ‘we do not become aware that we have made these demands until an active question arises as to whether or not they will be fulfilled’ (Goffman, cited in Burns 1992: 213). Stigma emerges when a person possesses a characteristic that differentiates herself or himself from others in ways that could be perceived as negative, dangerous or inferior. The process of stigmatization constructs a discrepancy between the ‘virtual’ and ‘actual’ social identities (cf. Goffman 1963: 12–14). In nearly all of the 16 cases I analysed, the school careers of disabled students separated and isolated them from their non-disabled contemporaries until they went to university. This highlights the lack of inclusive schools in socialist and postsocialist Hungary where disabled and non-disabled children can study

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together. An artificial social distance between people with and without disabilities thus developed which led to further stigmatization and exclusion, for example due to a lack of information or contact. The lack of state support for disabled members of society and to some extent their total isolation in the realms of education and employment are longstanding practices in Hungary. In the early twentieth century, disabled people were supported by church-based charities. After the First and Second World Wars, the state only recognized and financed one association for disabled people, which organized support for injured servicemen and soldiers.2 From 1949, some so-called ‘target firms’ (célszervezet) were created to provide jobs for people diagnosed as having a ‘reduced ability to work’ in line with the socialist prioritization of work and labour productivity (cf. Fieseler and Zavirsek in this volume). However, these firms (factories, craft producers, textile makers etc.) had to fulfil demanding orders from the state that resulted in very poor working conditions (cf. Kálmán and Könczei 2002: 251ff). In light of the socialist government’s policies of full employment, the goal of the pension system was not to rehabilitate people with a ‘reduced ability to work’, but to remove or dissociate them from the labour market. Although employers were legally obliged to employ people officially diagnosed as having a reduced working ability, genuine rehabilitation support for disabled people was neither promoted nor financed by employers or the state (Kálmán and Könczei 2002: 257ff). The change of political, economic and social systems in 1989 not only brought democracy to Hungary, but also exposed and exacerbated social issues like poverty and unemployment. The transformations were particularly difficult for disabled people who had often lived invisibly on the margins of society. Constrained resources on the part of state and individuals meant that even basic support for social participation and independent living, for example equipment to facilitate mobility, was unavailable. This lack of effective social support continues to cause everyday challenges for many disabled people as buildings and public transport are often completely inaccessible and can only be used after complicated planning (e.g. companion, additional costs, lifts). As explored in the cases presented later in this chapter, the participants in my study discussed their everyday difficulties in great detail, characterizing inaccessibility as an insurmountable obstacle in daily life. Despite the problems facing disabled people during Hungary’s transition away from state socialism, important changes at legislative and community levels are worth mentioning for their impact on life histories. The lack of equal opportunities and social integration for minorities, not least disabled people, was increasingly addressed and criticized in public discourses after 1989. For the first time in Hungarian history, the population censuses in 1990 and 2001 counted the number of disabled people. Hungary’s first law dealing with the basic requirements for comprehensive rehabilitation and equal opportunities came into effect in 1998.3 Over time associations and interest groups for people with disabilities were founded and initial steps towards an inclusive school system were taken.

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Research on disability in Hungary Very little research about social inequalities or discrimination in Hungarian society was conducted before 1989, with disability being particularly neglected. After the end of state socialism, research on disability in Hungary was used to develop policy measures for equal opportunities whilst the media increased public awareness through its criticisms of society’s treatment of disability. In this respect it is important to emphasize that the first pieces of non-medical research about disability concerned the question of inclusion versus segregation in the education system (cf. the chapter by Victoria Shmidt in this volume). Such work asked whether a mentally or physically disabled person could be educated in an inclusive environment and tended to focus on specific forms of disability. Conclusions favouring integration or segregation were put forward in line with political ideas and institutional specifics. Importantly, such work did not look holistically at disability or disabled people’s lives in their full entirety. For example, studies about sexuality, employment or labour market integration were almost never conducted. After 1989 non-profit organizations, including self-help groups, started to play an important role in disability research in addition to state sector bodies, mainly universities and special education institutes.4 The situation of mentally disabled children was frequently discussed and therefore researched, often with a focus on children’s social surroundings and family. Although such work received greater attention than during the state socialist period, it still tended to focus on individuals or individual parts of their lives, for example education or employment (e.g. Tardos 1990; Gyarmati 1996; Lányiné Engelmayer and Marton 1991; Makrai 1999; Zászkaliczky 1999). Although some of these studies were rather ‘deficitoriented’ in their approach, they made an important contribution to disability research in Hungary, which today encompasses methodological discussion, sociological analysis and critiques of inequalities and exclusion. Nevertheless, Hungarian research on disability has only explored a small part of the issue and often concentrates on the supposed ‘deficits’ and ‘needs’ of disabled people. It is unsurprising that public opinion and societal discourses regard disabled people as ‘victims’ given that the media publicizes numerous charitable fundraising events for ‘poor and needy’ disabled people. In preparation for my study of life stories, I conducted a content analysis of various media appearances by politicians, newspaper articles about disability, television programmes (2000–5), personal accounts (from 1998) and a film with and about visually impaired people. In focusing on how disability is framed (the choice of words, comments, invited guests), I found that messages about disabled people were repeatedly relayed that they cannot care for themselves and that they lead sad, unfulfilled lives without assistance. Society’s responsibility is then projected as reducing the supposed suffering of disabled people. Interestingly though, the relatively new phenomenon in Hungary of disabled university students suggests that this characterization is no longer accurate. Statistically speaking, disabled people in Hungary face discrimination and inequality in the field of education. According to the 2001 census, 32 per cent of

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disabled people had not completed primary school (grades 1 to 8), which was the highest level achieved by a further 39 per cent; 25 per cent had finished secondary school or professional education and fewer than 5 per cent possessed a university degree. In 2002 a regulation was adopted to promote equal opportunities for disabled students in the higher education system and thereby improve their chances on the labour market.5 According to a survey by the Hungarian Ministry of Education, there were 271 disabled university students in 2002 (Andrásné 2002: 11). Of those, 37 per cent were mobility-limited, 13 per cent hearing impaired, 30 per cent visually impaired, and 20 per cent had other forms of disabilities such as cognitive impairments and/or multiple disabilities. In recent years, political changes and the development of an assistance programme for disabled members of Hungarian society have had positive effects on their participation in the educational system. This was clear in the life stories and educational trajectories of my research participants, who often anticipated and reacted to broader political and social changes. Some of my interview partners only learnt about their growing opportunities for post-compulsory education through news reports about legislation. Others even delayed their study plans until the 1998 Law for Equal Opportunities came into effect, using the additional time to acquire further qualifications or to prepare for university. The influence of policy and societal changes on disabled students’ lives will be clear in the following sections, where I discuss the aims, methods and key findings of my life story analysis.

Research question and methodological considerations My research asks how disabled Hungarian students deal with their physical disability biographically. This entails interrogating the significance and influence of disability in their lives – in other words, the biographical meaning of disability and how this changes over the life course. More broadly, how do the students design their lives within dominant political, social and societal frameworks? I seek to learn what resources disabled people have and how they use new social and political opportunities to achieve their personal goals. In order to explore these questions, I conducted 16 life history interviews with physically disabled Hungarian students in 2004 and 2005.6 The interviewees were born between 1971 and 1982 and had one or several physical or sensory disabilities. At the time of the interviews they were studying at one of three colleges and universities. Most interview partners were studying computer science and I later discovered that this subject was rarely chosen out of interest, but because it is frequently recommended by different interest groups for disabled people as ‘suitable’ and job-related. Some of the interviewees studied history and one person was training in law. The interviews were conducted in a biographical-narrative style (cf. Schütze 1983; Rosenthal 1995; Fischer-Rosenthal and Rosenthal 1997a; Fischer-Rosenthal and Rosenthal 1997b; Rosenthal 2005). The distinction between ‘life story’ (the narrated life interpreted from a current viewpoint) and ‘life history’ (the events

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experienced in the past) is important here (cf. Rosenthal 2004: 49). In most cases, I had two or three meetings with each ‘biographer’ or person recounting the life story.7 I contacted the interviewees by telephone and only briefly referred to the research topic of life histories of students with physical disabilities. Participants often mentioned that they had never been asked about their opinions or their personal lives. I started the interviews with the following opening statement: ‘I would like you to tell me your life story. I will not interrupt you, but I will make some notes about points to which I would like to return later.’ In line with the methodology for biographical-narrative interviews, the interviewee’s so-called main narration is followed by supplementary questions based on notes from the first part of the interview. The details of biographers and other persons in the narratives have been anonymized.8 The transcripts were analysed using a reconstructive approach that considers both the objective biographical data (events) and narrative style (self-presentation) contained in individual interviews (cf. Rosenthal 1995, 2005). The ultimate goal was to identify causal mechanisms linking narrated life stories to wider events. This was achieved by comparing and contrasting individual cases with each other in order to identify ‘ideal types’ that represent different strategies for incorporating disability into personal life histories (cf. Rosenthal 2005: 74–85, 96–97, 194–195). Additional research was blended into the analysis of interviews, for example historical facts and contemporary scholarly knowledge that contextualize and clarify the life stories.

Living with a disability: individual cases This section presents three individual case reconstructions. Here I analyse why a person acted in a particular way in a concrete situation or phase of life and how this affected their personal presentation of their life story. Later in this chapter, I will discuss the ‘ideal types’ reflecting how disability may be included in personal stories. Péter: ‘So what if I am not able to drive now? I am able to do everything else’ At the time of our interview (2005) Péter was 28 and had just started his second year of studies in information technology. He worked as a part-time computing teacher for blind pupils in his old vocational college and lived with his parents in the capital city, Budapest. Péter was born as a premature baby in a larger city in Hungary in 1977 and underwent medical treatment in an incubator for weeks. During this time he became blind, most probably due to an overdose of oxygen. He started his life story with this incident – birth and blindness: I was born then: in 1977, I was premature and was born at six and a half months. As a result I landed in an incubator. I don’t know the cause of this premature birth. This was declared to be a medical error, that the oxygen dosage was not correct, they gave more oxygen rather than less so the child

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would not suffocate but when they gave a little more, then something happened: it became disabled, the child, me, for example, my eyes, so my optic nerves burnt out, with this warm, overdosed oxygen. [I. 1/9–18] At the beginning Péter characterizes his history as a medical failure on the basis of what he had heard from his parents. Although there may have been other explanations for his blindness, for example the prematurity itself, it was explained to him as a medical mistake, an overdose of oxygen. He makes it clear that he was made disabled, implying that without this failure or accident he could have lived a different life. His father worked as a locksmith and his mother was a conveyorbelt worker in a factory. He has a sister who is 14 years older, but with whom he did not have a close relationship due to the age difference and later geographic distance. The residential institution Péter spent his kindergarten and primary school years far away from his family in the only institution for blind children in Hungary. He justifies this step by the facts that both his parents had jobs and that during the 1980s disabled children were not permitted to attend ‘standard’ kindergartens. Péter speaks about this time in the following way: Can you imagine what it’s like for a six year old child to be practically handed to an institution? [very clear, slow] Since then, when someone, says that institution, I’m so … well, I could explode … to me it sounds like an orphanage and I am not an orphan. These years for me were so terrible that [very softly] … not only being away from parents, being away so like a, typical then this was the institution, so a child who lives 200 kilometres away and is actually allowed to go home at weekends. I don’t know if it is still like that today so that [short laugh] so at that time, in our time, there were one or two remedial teachers who failed this job and I think they are still there today. [I. 1/47–2/6] Péter blames the staff of the residential institution for his negative experiences. He also makes the state responsible by asking why there was no other option for blind children, thus interpreting the event from his present-day standpoint. The sense that he was abandoned as a child appears to be closer to a feeling held in the past. This is combined with a permanent fear and feeling of abandonment, which can strongly influence children’s relationships with adults and parents (cf. Freud 1987; Kálmánand Könczei 2002). These years in the institution meant hope, suffering and fear of abandonment for Péter and he started to distance himself from people around him like his mother and father. Later his mother moved to the capital and found a job as a kitchen assistant to be near to her son. His sister and father continued to live far away in their home town. Although Péter achieved

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good marks in school, he had significant problems with the school staff. He opposed wearing socialist symbols like the pioneer tie or school uniform. Independence and initial successes Péter’s parents tried to obtain medical and alternative help for him until his adolescence. He thus grew up with the belief that the biggest challenge in his life was overcoming his blindness. His strength, accomplishments and also his own wishes were accorded secondary importance. The results of the case analysis show clearly that Péter grew resentful and started to arrange his own life independently from his parents from quite an early age. He could achieve this at the end of primary school due to the new political situation in Hungary after 1989. He found one of the first inclusive vocational colleges in the capital, far away from his home town, but where he could pursue his interest in computer technology. Publishing in professional computer journals, developing new computer programmes for blind people and establishing himself in the ‘seeing community’, Péter experienced a time full of positive events and recognition between the ages of 14 and 19. The discrepancy grew between his success and both the nonacceptance of his blindness and lack of appreciation of his activities from his parents and social surroundings. Being ‘different’ was neither desired nor accepted in his childhood, but it became positively embraced and catalysed Péter’s professional success. Higher education – looking for new ways After successfully passing his school examinations Péter (aged 21–22) started his university studies as a software engineering student in his home town. This was facilitated by new equal opportunities legislation (XXVI; 1998 about Rights of Equal Treatment for Disabled People). Péter did not find life in his home town and his return after 15 years to be particularly positive. He had problems with exams because he was expected to draw. Péter tried to soften his academic failures by succeeding in other ways and activities. He played in a music band, worked for a radio station and completed a course in radio presenting. However, he felt increasingly rejected and often failed due to a lack of support for his blindness. He could not find work as an advertising announcer and he was dismissed as a presenter after his internship with the blithe reason that ‘a blind person could not be employed anyway’. He was sorely disappointed, but searched for other ways to achieve his aims. He took over the editorial office of an internet radio programme and worked as a volunteer sound engineer in a cultural association for blind people. This latter job prompted him to commute weekly between his home town and the capital. Aged 25–26, Péter started a relationship with a blind woman with whom he shared a common history: becoming blind in an incubator and suffering in the boarding school. She is interested in arts and works as a teacher for blind children.

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After receiving his degree in software engineering Péter wanted to start a distance learning course to become a computer science teacher. He obtained not only an internship in his old vocational school in Budapest as required for his studies, but also a part-time job as a teacher. Péter spoke about his activities as follows: At the beginning I felt that it was a bit of a sham job, but I’d rather do this than not [short laugh] because one has to make a living practically. This is what it’s about, so on the one side I was averse to their blindness hmm, no well: this is such a typical fact, that the disabled don’t stick together. [II. 22/38–42] The job was on the one hand a reassurance, acknowledgement and form of recognition. On the other hand, Péter felt ambivalent about teaching blind pupils. This ambivalence escalated when he first received confirmation of his place to study computing and some days later a rejection letter referring to his blindness. Péter fought this decision by contacting the media and trying to enlist the help of disability activists. Although he won his appeal to start his studies, he did not feel positive about this decision and there are no marks of triumph. He had trouble and conflicts with professors at the university. At this time Péter focused more and more on the interests of disabled people. He organized a media performance of a small cultural association, co-founded a self-help association and received an award for his social engagement. However, Péter constantly questioned these successes and achievements. The following reasoning is just one example of what he calls his ‘pseudo-work’: However, it is a little bit ambivalent or equivocal, the whole thing [short laugh] but everywhere, where I succeeded, or I thought that I succeeded, these are all, all just hobbies [laughing]. But I do as one has to, I know that I want to do something [short laugh]. [I. 15/30–34] Overall, Péter presented himself as a self-confident all-rounder during the interview. He expressed a very strong wish to be judged based on his own achievements. Difficulties with self-evaluation and appreciation by others were key issues in his biographical self-presentation and also in his life. This outcome of the discrimination he experienced is one of the important features of his biography and helps to explain his actions and interpretations. The reconstruction of the life history shows that Péter repeatedly distanced himself from disabled people in his life and only came into contact with them when he or his achievements were not accepted by non-disabled people. He was not discursively aware of these processes of divergence and later reconnection, which operated on a latent level of his actions. One apparent dimension of this process was connected to a permanent move between cities.

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Mariann: ‘I longed for an ordinary life so much and in fact I do even now’ Mariann has been paraplegic since the age of 17 due to a car accident. I interviewed her in 2005, ten years after this accident. She lived in a separate part of a student dormitory together with four [male] students with physical disabilities, who I also interviewed. Mariann was my second interviewee and at the time of our meeting she was studying in the second year of her computer science degree course. Mariann is the oldest child in her family and was born in a medium-sized town in south-west Hungary in 1977. She grew up in a household where she experienced a lot of ambivalence, fear and aggression. Her parents had relationship problems connected mostly to her father’s alcoholism. As a child, Mariann tried to live without attracting attention and to quietly get through school. She frequently performed caring and domestic duties in the absence of her parents, unlike her sister, who is two years younger. Moving around, gymnastics, jogging and playing outside were constant themes in her narratives about her childhood. Most likely this is deeply connected to her post-accident situation because she can only move now in a very restricted way and at the time of the interview she lived far away from her sister. These parts of the past were described in vivid detail. In contrast, her childhood and family life were totally blended out of her life story at first. Only after some prompting and invitation did she speak about particular life phases. It is not only her secret management of her life story that deterred her from talking about her family, but also the interview situation – she was asked to speak as a disabled student and she felt that she should speak only about her ‘new life’.

The years of vocational education before the car accident After finishing school, Mariann trained to be a pastry cook and she found a lot of appreciation outside her family. She was preparing herself for an independent adult life. Mariann was very positive about her education, which she described – in comparison with the earlier and also later stages of her life – as ‘a free life without worries’. It is important to emphasize that Mariann’s situation at the time of interview will have strongly shaped both her reminiscences and also the way she frames and tells her life story. Events and people in the time before her car accident are embellished and in part idealized while some negative events are under-emphasized or completely suppressed. Mariann discussed her car accident and the reason why she ‘sits in a wheelchair’ at the very beginning of her biographical account, after having summarized the first 17 years of her life in one sentence. She tried to relativize the guilt of the very young driver by describing it as a ‘completely normal accident’. She only discussed the accident in greater detail upon further prompting: it happened when they were driving with friends and her sister after a visit to a disco. Mariann’s best friend from primary school, Ilona, was also in the car. She told half a sentence about the accident as she recalled her earlier life and her former friend:

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So from the beginning we were always together, we were actually born together, and then, so after that was my accident. She was also there in the car and then … let’s say after that she often visited the hospital and then she very often came to us. Only over time or I don’t know we drifted apart. [I. 11/8–11] It was hard for Mariann to remember the precise details. She did not name the accident as the direct reason for the end of this friendship. The description ‘my accident’ is interesting given that Ilona also experienced it. In this way the accident becomes solely her accident, as it was only she who suffered permanent consequences – impairment – from it. Shortly after the accident she lost the circle of friends from her ‘old life’, which she describes in her recollection as ‘completely normal’, because of their different ways. Mariann had a complicated relationship with her sister, which is perceived as an alliance formed by joint suffering because of their alcoholic father, but also characterized by power-positioning, rivalry and ambivalence. Her sister nonetheless remained the most important person to whom Mariann relates, who motivated her continuously and supported her after the accident in rearranging her life. The sisters often experienced negative and threatening periods in their childhood, but they both escaped. In the accident, however, only the sister succeeded in escaping. It remains unknown whether Mariann has ever talked about the accident with her sister, or whether her disability or her sister’s position as the person who did not become disabled has been openly discussed. In her life history, Mariann has an accusatory attitude towards her mother on a subconscious level. She makes her mother responsible for her scarred and violent childhood as well as for the death of her father, which was caused by alcoholism and occurred shortly after the accident. In her childhood memories her mother is described as a weak person. Yet from the time of the accident she is presented increasingly as a determined person who extensively helps Mariann in her everyday life. Nonetheless, her mother stays in the background throughout the interview because of their ambivalent relationship and later unwanted dependence. The burdensome family tragedy and the death of her father are similarly only touched upon and have not been emotionally processed. ‘The new life’ As a result of the accident, Mariann became severely disabled with her impairments affecting all aspects of her life and her family. Proper physical, mental and social rehabilitation was unavailable in Hungary at this time (1995) due to a lack of personnel and resources as well as the absence of a barrier-free built environment (cf. Kálmán and Könczei 2002). In her story, Mariann maintained that her emotional suffering after the accident was mainly the result of her physical pain. She presents herself as a strong and pragmatic person, thereby differentiating herself from other people with a similar fate. Forced to rely on her own resources, Mariann tried to adapt quickly to the new situation, to redefine her life and to

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continue to cope. She completed her final college examinations a few months after the accident. She tried to get a job as a pastry cook and to integrate into working life. However, her attempts failed because of the lack of a barrier-free environment and the shortage of workplaces suitable for disabled people (cf. Zaviršek in this volume). Soon after, she began to study for A-levels in an evening school together with her sister. When her sister entered employment and started her own family, Mariann (then 22 years old) decided to free herself from her dependence on and ambivalent relationship with her mother and sister by choosing to study at a university far away from the family. The results of the case reconstruction show that the decision to continue education was initially a side product of her loss of orientation and perspective, but helped Mariann to redefine her life and was consciously used later as a chance to build an independent life. Mariann often argued that she wanted and wants a different way of life that does not involve education and that is a ‘normal and average life’. A large part of the full interview with Mariann concerned faults with social policies, the health system, the inaccessible built environment and the stigmatizing attitudes of other citizens.9 In this way she could distance herself from personal and emotional impressions of her disability in the account. Although Mariann presented herself as a victim who is completely defenceless in various situations and who has many difficulties in everyday life (for example transport and coping with stairs), she nevertheless depicts herself as a person who is able to cope and neither earns nor tolerates pity. Éva: ‘Perhaps I can better understand the situation of a disabled person than a perfect, healthy person’ I first contacted Éva, who has a hearing impairment, by telephone. She asked me to stay in contact with her by text message rather than phone calls because she has a speech impediment and finds it difficult to talk. The interview took place in the student hall of residence in a small town in Hungary where she was completing her second year of a social work degree. Éva was born in 1982 in an area of Romania that is inhabited by ethnic Hungarians. She has a brother who is two years younger. Her grandparents on both sides worked in agriculture while her parents were employed in Romania as export traders, but their jobs were badly paid, as was normal during the socialist period among the Hungarian minority. When Éva was four years old, she caught pneumonia and underwent medical treatment, but a hearing impairment remained after her recovery. Although Éva had an operation, her hearing could not be restored. The reason given was medical error – the wrong medical treatment. The family received very little medical help in Romania and they often travelled to Hungary, where they paid for treatments themselves. This financial burden meant further difficulties for the family. Éva completed five years of primary school in Romania and in Romanian. She had great difficulties with her mother tongue (Hungarian) as well as with the Romanian

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language. Her serious hearing impairment and her problems with teaching materials were ignored by the school. Her life history includes many stories about the discrimination and lack of understanding she experienced at school. I don’t know, they didn’t like me, I have a hearing impairment so they perceived me as mentally handicapped, or I don’t know, they didn’t like me, if I accidentally touched one of them, ‘yuck, yuck’, they wiped the coat, so they hated me very much. [I. 6/11–14] In this context Éva recounted that she was hit by other pupils, but her younger brother defended her. These negative experiences made her very insecure and she was often ill and absent from school. At this time Éva also developed severe asthma and was repeatedly treated for it in hospital. The analysis of her narrative shows that Éva suffered from serious asthma attacks when changing her school or place of residence. A new home and the audible world In 1993 Éva’s family decided to leave Romania and to build a new life in Hungary. Her parents gave her especially strong support for this new beginning, a feeling of trust and great closeness. In Hungary they were either unemployed for long times or had badly paid temporary jobs. In this new situation Éva saw her parents’ great readiness to make sacrifices. The narrative analysis shows that she felt jointly responsible for her family’s poor living conditions. During her interview Éva argued that her family changed country only because of her, so that she could receive medical treatment. However, the analysis shows her parents may also have chosen to take advantage of the new political and social situation after 1989 to break away from their situation as a disadvantaged ethnic minority in Romania. For Éva this change was crucial. She received her first hearing aid aged 13 in Hungary and for the first time she could perceive her environment a little better. In her account this event is described as a ‘wonderful thing’. It remains unclear why Éva received a hearing aid so late and did not undergo speech therapy. Later school years and the ‘caring’ vocation After finishing primary school, Éva and her parents found a grammar school where she was able to continue her studies. Éva experienced more discrimination and lack of understanding there. In the account, her later school years are described as ‘dreadful’ and explained through short stories. In these stories Éva still remained passive and helpless in the face of insults and prejudice. At this time Éva started to help her parents to look after relatives in the holidays, such as her grandparents in Romania or other family members in need of care. Despite her bad experiences and social isolation in the grammar school, Éva passed her exams with good results and entered higher education.

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Éva moved into a student hall of residence and followed her dream to become a professional social worker. She worked at various associations in a voluntary capacity where she was able to help homeless people, socially disadvantaged families or disabled people. Through her volunteer activities and fellow students, Éva experienced understanding and acceptance for the first time. This reinforced her decision to orientate herself towards disadvantaged people and a caring profession. It is noticeable in her interview that Éva talked about her helping activities in detail, clearly and loudly, which was not the case concerning other topics in the interview. Éva’s life story is ultimately the ‘story of a victim’ and is presented as such. The experiences of discrimination, the willingness to make sacrifices and her parents’ solidarity had a great biographical influence on Éva. The resources originating from these experiences helped her to find a hook in her life. She found it first in her voluntary activity as a carer, which she later chose consciously as her profession or rather her vocation. In this way she broke away from the potential passivity of her suffering.

Different ways of processing disability-related stigmatization Coping with discrimination and stigmatization as well as the almost complete lack of equal opportunities were the most important biographical challenges for my interview partners. The nature and severity of their disability played an important role in their life histories. The more severe and especially the more visible (and hence stigmatising) an impairment is, the more the ‘biographers’ (interviewees) suffered from social exclusion. For example, they experience on a daily basis that their physical disability is perceived as ‘insanity’ (usually called elmebeteg in Hungarian). They are ignored or even insulted during everyday encounters and official or administrative errands. When it comes to decisions such as marriage or pregnancy they are often confronted with a lack of understanding. One research participant, who I will call Nikoletta, was physically disabled as a result of a car crash and used a wheelchair. When she became pregnant her friends and to some extent her doctor tried to convince her not to have the baby – not on the basis of Nikoletta’s physical state, but because the professional felt that someone who is disabled ‘cannot provide a normal life for a child’. She gave birth to a healthy baby shortly after her wedding and now lives with her husband, baby and sister in a rented flat. During the course of their lives, the disabled students I interviewed demonstrated high potential for personal development and action in the face of structural and social obstacles. However, they barely recognized their individual achievements, especially in a positive way, due to the discrepancy between their own self-evaluation and negative ascriptions by others. The latter are based on strong prejudices within Hungarian society that both cause and reinforce the lack of possibilities for social participation. We can better interpret the problem of self-evaluation and ascription by others with regard to disability if we build upon the assumption that biography and body are intertwined and develop in interaction with each other (cf. Fischer-Rosenthal 2002).

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As Fischer-Rosenthal (2002: 16) explains, biography and the body ‘produce each other and are produced through each other, developing autonomous structures that are nonetheless connected to each other so that one supports yet irritates the other’. In the case of my interview participants, bodily impairments – the ‘deficiencies’ – seem to be the most important or decisive factors of interpretation. In social interactions, a disabled person is often reduced to his or her impairment. A revealing example is a 25-year-old man – I will call him Lajos – who one night suddenly went blind at the age of 22. Lajos was very successful professionally before his blindness, working as a branch manager for a large company and later as a sales and distribution advisor. After going blind, he rearranged his life in a short period of time. Lajos returned to school and opened his own sports massage practice. However, he only marginally mentioned his road to success in his narrative. To him, it was an emergency solution to secure his livelihood and fraught with obstacles. Before he opened his practice he had been employed in a renowned sports club, but had then been dismissed because it was questioned whether a blind man could work in such a profession. Lajos was reduced to his visual impairment and fought against this discrimination, for example by refusing to use a white walking stick. He lives in a major city and memorized all relevant routes and traffic links in a very short period of time. The analysis carried out in this chapter and my wider research suggests that belonging to a family in an outsider position (e.g. ethnic or other collective minority, the presence of other family members with disabilities) can contribute to biographers’ personal agency and provide resources that help them to deal with their own disability. For example, Otto was 24 years old when we met. His mother had a severe physical disability and also belonged to the Roma ethnic minority, which is discriminated against in Hungary. Simply for this reason, they have always been in an outsider position – they were not only discriminated against for being Romani, but because of the mother’s disability. They were even partly excluded within the Roma community because Otto’s father had left the family and his mother raised him alone in addition to completing vocational education, which is unusual today. Presumably because of the same condition his mother suffered from, Otto became increasingly limited physically until he eventually lost his mobility completely (all four limbs are largely paralysed). For Otto this was ‘a normal thing’. The data analysis shows that he does not find ‘being disabled’ so serious due to his multiple outsider position. Disability has not been a major obstacle when realising his professional and private goals and he has integrated it into his life. His position within an outsider group (in the Roma community) helped him to confidently deal with any disability-related prejudice. He finished his training and then studied at various universities until he found his job-related interest. Today he works in an association for physically disabled people as an assistant and project officer.

Biographical processing of disability: three ‘types’ My analysis of disabled students’ life histories ends with the presentation of broader, theoretical ‘types’ that typify the ways in which disability can be incorporated into individual life stories (biographies). Three overall types emerged

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in my analysis and I illustrate them with reference to the individual cases discussed above, although it is important to note that a specific person’s life history may not always overlap fully with a theoretical type. Type A – ‘the aim-oriented lone warrior’ Péter is a biographer of the type I call the aim-oriented lone warrior. People who represent this type have experienced unstable relationships, a lack of role models and family break-up since their early childhood. Their achievements and own wishes were not supported or accepted, especially by key people around them. These factors make such individuals ‘lone warriors’ at a young age and they look for neither assistance nor an important attachment figure later in life. They follow their goals determinedly and persistently. They manage to repeatedly restructure their actions in response to changes in their life situation, drawing on changing conditions in society to reach their goals. As a result of this, representatives of this type suffer from the immense tension between their own self-esteem and poor appreciation by others. Important resources are developed and activated exactly because of this discrepancy. Representatives of this type are different from others of the same age due to their extraordinary efforts already in childhood. They aspire ‘to be different’ and ‘unique’ and they manage to position themselves as ‘self-confident all-rounders’. Representatives of this type do not necessarily adapt to general conditions in society, but try to change the structure of them in order to achieve their own goals rather than increase personal or social acceptance of disabled people. Type B – ‘functioning and adapting’ Mariann’s case is an example of a ‘functioning and adapting’ biography. People who represent this type have a family or life story that is strongly marked by illness, the loss of important attachment figures, feelings of guilt and existential fears. In contrast to Péter as a representative of Type A, they have an important role model to whom they can turn and base their behaviour. They already learn as young children to hide negative emotions and not to create additional problems for their families. The main aims are coping and functioning. They have a reserved attitude to their own disability, which is largely unacknowledged in their biography. They lead their lives by trying to conform to general conditions and expectations in society. Striving for ‘normality’ and conformity – in terms of not doing anything extraordinary, but meeting social expectations – is the key to selfpreservation and also helps to prove one’s own legitimacy in the family. Type C – ‘the helper and activist’ Éva’s story fits with a biographical type I call the helper and activist. People who represent this type develop feelings of solidarity and a great willingness to make sacrifices at an early age. They have direct experience of the negative effects of

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their own disability, such as discrimination and the lack of equal opportunities. However, they are not trapped in a ‘victim role’, but in fact draw resources from it when searching for support or a hold in their lives. During the course of their lives, representatives of this type try to help others in need in the private sphere and in a voluntary capacity, to represent minority interests or even work as carers and social workers. They choose the strategy of the helper and advocate to overcome the biographical crisis and disadvantages resulting from their own disability as well as the discrimination experienced by their families. In this way they are not passive in the face of suffering and make disability a central part of their life story.

Conclusions The biographical case studies presented in this chapter have focused on how young disabled students in Hungary weave the theme of disability into their life stories. My analysis also shows how social attitudes towards disabled people in Hungary are reflected in the narration of individual life stories. This has revealed both contemporary processes of stigmatization and also how techniques for managing and living with stigma may change during the life course. In the life stories, society and individuals are not seen as in dualistic opposition, but are analysed as interdependent and mutually constitutive. The various ways of framing disability in a life history show how varied the ‘response’ to disability-related stigma and discrimination can be. Emphasizing their disability is not a priority for people who represent Type A – the aim-orientated ‘lone warrior’ – who tend to underplay it when discussing their personal achievements. Such people seek to achieve their own goals even when structural conditions make this difficult. Such narratives stand in contrast to people who ‘function and adapt’ – for whom the theme of disability is also underplayed like Type A, but who place greater emphasis on adjusting to social conditions and expectations. People who represent Type C – ‘helpers and activists’ – are proactive in embracing their disabled identity and challenging related discrimination. Their helping and advocacy activities reduce the possibly negative connotations of explicitly framing a life story around disability. The majority of the disabled students who were interviewed for this project received a low level of education after 1989 when they studied as teenagers without any support in an integrated school system. They compensated for this obstacle in later life by gaining places at university and mastering their subjects. They thereby disproved prejudices and accusations of educational impediment or ‘deficit’. However, my interviewees were still frequently reduced to their impairments since their abilities and achievements are often not recognized or believed by the non-disabled population in Hungary. This partly reflects the features of an ‘established’ and ‘outsiders’ figuration (Elias and Scotson 1965) and partly the lack of real equal opportunities and related constraints on independent living in Hungary, including the absence of a barrier-free environment and social participation. In this respect it is interesting to see how disability-related discrimination appears

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in personal narratives and how it is dealt with biographically. Every life story included the theme ‘disabled people and being disabled’ and most of my interview partners positioned themselves as disabled. They discussed their nonbelonging to the mainstream (non-disabled) population as the result of structural conditions and discrimination. However, they made it clear that they differ from ‘ordinary disabled people’ through their activities, academic achievements and own personality. The unusual feature of receiving university education led the students to feel that they had attained or were supposed to achieve a better position within ‘disabled society’ (a fogyatékosok társadalma), which is what they called it without exception. This phenomenon could be found explicitly or latently in all types, but was especially pronounced in Type A – people who are ‘aimoriented lone-warriors’. In their life stories the disabled ‘biographers’ did not narrate their own [negative] individual experiences, but rather relayed stories coming from outside or widely-held statements and prejudices about disabled people and their ‘characteristics’ in society. The people I interviewed understandably did not want to conform to these negative statements and, in some cases, they distanced themselves from disabled people who could be seen as providing reasons for prejudice and stigmatization. In other cases, life experiences meant that some students in my study dealt with their disability frankly and tried to represent disabled people’s interests during the course of their lives, even if they positioned themselves in such a way that they are not the weakest and the neediest persons in this constellation.

Notes 1 After the Second World War, Hungary became part of the ‘Eastern Bloc’ that was dominated by the Soviet Union. After Stalin’s death (1953) the Sovietization policy in Hungary was temporarily curbed until the pro-democracy Hungarian uprising in 1956, which was defeated by Soviet troops. In subsequent years Hungary was isolated in foreign affairs, but the ‘Kadár era’ (1956–88) was a period of comparatively liberal politics and high material welfare. 2 The association was called HADRÖA (Hadirokkantak, Hadiözvegyek és Hadiárvák Nemzeti Szövetsége) – the National Council of Injured Servicemen, War Widows and War Orphans. See Kálmán and Könczei 2002: 237. 3 Paragraph 26 of law XXVI, 1998 on the Rights and Guarantee of Equal Treatment of Disabled People. 4 Various research projects were carried out in the Országos Közoktatási Intézethez (National Institute of Education) and the Eötvös Loránd Tudományegyetem Bárczi Gusztáv Gyógypedagógiai Fo˝iskolai Kara (Eötvös Lorand University, Bárcz Gusztáv Faculty of Special Education). 5 29/2002 (V. 17.) OM rendelet a fogyatékossággal élõ hallgatók tanulmányainak folytatásához szükséges esélyegyenlõséget biztosító feltételekrõl – Order of the Ministry of Education about the preconditions for equal educational opportunities for students with disabilities. 6 The interviews were conducted for the project ‘The individuality of disability’ for the former Ministry of Youth, Family, Social Affairs and Equality (now Ministry of Labour and Social Affairs). The idea for the project came from the chairperson of the

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‘Lelkierö’ association (which is affiliated to the University of Debrecen) and myself. One of the tasks of this association is to support the mental well-being of students. Contacts with interview partners were established with the help of the ‘Lelkierö’ association. 7 Within biographical research, the term ‘biographer’ refers to the interviewee or person telling their own life story. The constructivist nature of personal biographies means that it is possible to be one’s own biographer. 8 The interviews were carried out in Hungarian. There is a reference in brackets after quotations, e.g. (Péter I. 2/12–32). In this example it means that the quotation is from the first interview with Péter, on the second transcribed page, lines 12 to 32. 9 It is important to note here that the interview with Mariann took place two weeks after the decision of the Hungarian government to postpone for a further five years the deadline of 1 January 2005 laid down by law for the remodelling of a barrier-free environment, especially public buildings.

References Andrásné, Judit Teleki (2002) ‘Fogyatékkal élo˝ hallgatók a felso˝oktatás’ in Tanácsadás az Esélyegyenlöségért, Fogyatékkal élö hallgatók a felsöoktatásban, VII. Conference of University Associations, available at http://www.feta.hu/node/80 (accessed 17 December 2012). Burns, R. (1992) Erving Goffman. London and New York: Routledge. Elias, N. and Scotson, J. (1965) The Established and the Outsiders. A Sociological Enquiry into Community Problems. London: Frank Cass. Fischer-Rosenthal, W. (2002) ‘Biographie und Leiblichkeit : zur biographischen Arbeit und Artikulation des Körpers,’ in Alheit, P., Dausien, B., Fischer-Rosenthal, W., Hanses, A. and Keil, A. (eds) Biographie und Leib. Giessen: Psychosozial Verlag, pp. 15–43. Fischer-Rosenthal, W. and Rosenthal, G. (1997a) ‘Warum Biographieanalyse und wie man sie macht’, Zeitschrift für Sozialisationsforschung und Erziehungssoziologie, 17(4): 406–27. Fischer-Rosenthal, W. and Rosenthal, G. (1997b) ‘Narrationsanalyse biographischer Selbstpräsentationen’, in Hitzler, R. and Honer, A. (eds) Sozialwissenschaftliche Hermeneutik. Opladen: Leske & Budrich, pp. 133–64. Freud, A. (1987) Die Schriften der Anna Freud. Band III: Anstaltskinder, Berichte aus den Kriegskinderheimen Hampstead Nurseries 1943–1945. Frankfurt am Main: Fischer Taschenbuch. Goffman, E. (1963) Stigma: Notes on the Management of a Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall. Gyarmati, T. (1996) Beszéljünk erröl. Miskolc: Adolesz Kiadó. Hillmann, K. (1994) Wörterbuch der Soziologie 4 überarbeitete und ergänzte Auflage. Stuttgart: Alfred Kröner Verlag, pp. 310–11. Kálmán, Z. and Könczei, G. (2002) A Taigetosztól az esélyegyenlöségig. Budapest: Osiris. Kastl, J. (2010) Einführung in die Soziologie der Behinderung. Wiesbaden: Springer Verlag. Lányiné Engelmayer, À. and Marton, K. (1991) Èrtelmi fogyatékosok szociális teljesitményeinek vizsgálata. Budapest: Akadémia Kiadó. Makrai, J. (1999) ‘Èrzelmi élet, párkapcsolatok, szexualitás’ in Kézikönyv az értelmi fogyatékos emberek lakóotthonaiban dolgozó segítök részére. Budapest: Kézenfogva Alapítvány.

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Rosenthal, G. (1995) Erlebte und erzählte Lebensgeschichte. Gestalt und Struktur biographischer Selbstbeschreibungen. Frankfurt am Main: Campus. Rosenthal, G. (2004) ‘Biographical research’ in Seale, C., Gobo, G., Gubrium, J. F. and Silverman, D. (eds) Qualitative Research Practice. London: Sage, pp. 48–64. Rosenthal, G. (2005) Interpretative Sozialforschung. Eine Einführung. Weinheim and Munich: Juventa. Schütze, F. (1983) ‘Biographieforschung und narratives Interview’, Neue Praxis, 3: 283–93. Tardos, K. (1990) ‘Csökkent munkaképességu˝ek a belso˝ munkaero˝piacon. (A foglalkoztatási re-habilitáció vállalati gyakorlata)’, Szociálpolitikai Értesíto˝, 3: 40–63. Zászkaliczky, Á. (1999) ‘Fogyatékosság normalizáció integrátió’, in Kézikönyv az értelmi fogyatékos emberek lakóotthonaiban dolgozó segítök részére. Budapest, Kézenfogva Alapítvány.

7

Breaking the silence Disability and sexuality in contemporary Bulgaria Teodor Mladenov

Since the fall of the state socialist regime in 1989, Bulgaria has experienced a turbulent ‘transition’ from a centrally planned towards a free market economy and from one-party rule towards parliamentary democracy. This transformation has been accompanied by a number of significant social and cultural changes, but also by a number of continuities. The new order ostensibly undermined all kinds of boundaries – national, ideological, cultural. Travelling abroad became easier and people gained unprecedented access to previously scarce or explicitly forbidden cultural resources, a process that has been greatly enhanced by the internet since the mid-1990s. Nevertheless – or probably precisely as a reaction to such disorienting openness – negative attitudes towards difference along major socio-cultural axes like ethnicity, gender, sexual orientation and disability have remained relatively stable. Public discussion on such issues was largely silenced during the state socialist period, when the problems of difference were expected to automatically wither away with the abolition of class exploitation. They did not disappear,1 but neither did they dissolve with the development of the free market and parliamentary democracy after 1989. The results of recent sociological studies strongly suggest that ‘at the moment in Bulgaria (and to a different but approximating degree in all postsocialist countries) many real problems exist in relation to the perception and approach towards difference’ (Tomova 2009: 120). The interplay between change and continuity over the last two decades of transition is especially pronounced with regard to issues of disability, although Bulgarian sociologists rarely consider this form of difference in their analyses. Two examples will clarify the point. As might be expected, individualism has quickly become the dominant way of structuring relationships with others and the self in the new, aspiringly neoliberal order (cf. Outhwaite 2011). Nevertheless, disabled people continue to be denied individual agency. This is particularly evident when one considers the ongoing hegemony of paternalistic personal assistance schemes (CIL 2009). They were first introduced by the government in 2002 and since then have proved time and again incredibly resistant to reforms along the lines of the Independent Living philosophy and practice (CIL 2009; Mladenov 2004). The other example is related to lexicon. In 2005, a major legislative change finally substituted the problematic label ‘invalid’ (invalid) with the more appealing ‘person with disability’ (chovek s uvrezhdane).2 The substitution was promoted by progressive disabled people’s

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organisations, reflecting the self-perception of the majority of disabled people in Bulgaria, particularly those of working age, as suggested by a nationally representative survey conducted in 2001 (CIL 2002: 15). Yet everyday use, supported by the media, continues to obstinately resist this linguistic transformation – for a great number of Bulgarians, as for most Bulgarian journalists, disabled people are still ‘invalids’. Illuminating such historical patterns makes it easier to trace the dynamics of disablism in Bulgaria. The term is introduced and widely used by British disability scholars as analogous to concepts like sexism, racism and homophobia (Thomas 2004: 578–79). Accordingly, disablism can be defined as ‘a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being’ (Goodley and Runswick-Cole 2011: 604, drawing on Thomas 2007: 73). This definition follows the insights of the social model of disability (Oliver 1996), which makes a sharp distinction between the social phenomenon of ‘disability’ and the bodily phenomenon of ‘impairment’. From this perspective, people with physical, sensory and/or mental impairments are disabled by society and it is this particular kind of oppression that is identified as ‘disablism’. Since the 1980s, the social model has been very influential politically and conceptually, not only in Britain, but all over the world, including Bulgaria. Nevertheless, it has been criticised by disability scholars for taking the naturalness and negativity of impairment for granted (e.g. Michalko 2002; Schillmeier 2010). Such critiques suggest that it is imperative to consider as an essential aspect of disablism the belief that impairment ‘is inherently negative and should the opportunity present itself, be ameliorated, cured or indeed eliminated’ (Campbell 2009: 5). Reports highlighting the inequality, segregation and oppression experienced by disabled Bulgarians have been mounting over the last decade, mainly due to the efforts of grassroots organisations of disabled people. These have included: nationwide studies criticising Bulgarian disability policy as a whole (CIL 2002, 2003, 2004); critical analyses of disability legislation (Panayotova and Todorov 2007); accounts of the inaccessible built environment, of which many recent examples can be found in the media; cases of discrimination adjudicated by the Bulgarian Commission for Protection against Discrimination;3 and, reports on the degrading and inhuman conditions within residential institutions (Angelova 2008; CIL 2004; BHC 2011). In sum, the restrictions of activity and the undermining of the psycho-emotional well-being of disabled Bulgarians have been well documented by Bulgarian human rights advocates, with occasional support from the media. The genealogy of this pervasive disablism refers back to state socialist responses to disability (Mladenov 2011: 479) but, more importantly, it has survived the demise of the regime. In 2007, an international comparative study covering 14 European countries put Bulgaria on one of the last places (twelfth) in terms of the overall inclusion of disabled people in the country (International Disability Network 2007). All this raises questions about the underlying features of the present Bulgarian context that sustain and/or facilitate disablism. Several such features can be outlined that might not be specifically Bulgarian when considered individually, but constitute a more or less distinctive physiognomy of the structure underlying disablism when taken together.

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Firstly, disability-related regulations, concepts and practices in Bulgaria have been heavily medicalised (International Disability Network 2007: 64–66; Mladenov 2004). Historically speaking, such medicalisation4 can be traced back to the influence of the Soviet approach of defectology (Grigorenko 1998) during state socialist times (on the Soviet medicalisation of disability see Iarskaia-Smirnova 2011: 120). At present, it is most conspicuous in the standard method for certifying disability status – the ‘medical expert assessment of the ability to work’ that exerts significant material and symbolic power over all structures and processes concerning disability (Panayotova and Todorov 2007; Mladenov 2011). And, as will be argued in the second part of this study, the medicalisation of disability permeates everyday discourse too. Secondly, Bulgarian disability policy-making is dominated by the socalled ‘nationally representative organisations of and for disabled people’ as defined in the Bulgarian ‘Law for the Integration of People with Disabilities’ of 2005. These large membership-based umbrella structures have been criticised for reproducing and sustaining paternalistic and charity-focused approaches to disability (CIL 2002, 2003, 2004; Mladenov 2009).5 Yet they have retained their exclusive position as the government’s ‘legitimate partner’ when disability policy is concerned, enjoying annual government subsidies (Panov and Genchev 2011). Thirdly, disability-related thought and action in accord with the social model of disability and the Independent Living philosophy is confined to a few grassroots civil society entities. At present, these groups are small in size, financially fragile and often excluded from local and/or national policy-making.6 So far, disability has not been pursued as a legitimate and valuable field of study by Bulgarian social and political scientists, or by those working in the field of humanities. This list of features is far from exhaustive but it nevertheless provides some clues for imagining the present physiognomy of what underlies disablism in Bulgaria. In addition to these ‘macro-level’ features though, disablism is also deployed – and challenged – on the plane of the everyday. One needs to look at this micro-level in order to understand the constitution and reproduction of social order and meaning. Common, everyday understandings of disability revolve around people’s views about their own and others’ bodies, and particularly around bodily differences identified as ‘impairments’. There is much to learn from this ‘carnal politics of everyday life’, as Paterson and Hughes (1999) have put it. Proceeding from this presumption, in what follows I will explore how Bulgarians discuss disability in non-expert, public contexts. The conjunction of the topics of sexuality and disability in an autobiographical essay and an internet discussion will serve as a ‘magnifying glass’ that exposes the ways in which disablism is sustained and/or challenged in everyday discourse. As far as my own conception of the body is concerned, it is informed by phenomenology, where the human body is seen as (i) a vehicle of meaning that is (ii) itself always already invested with meaning. This understanding of the body is captured by the phenomenological notion of living or lived body, in German – Leib (Heidegger 2001; Merleau-Ponty 2002). From such a perspective, pure physicality is an abstraction – an objectifying detachment from the meaningengendering context or what phenomenologists call ‘world’ (Heidegger 1962: 91–94). As Merleau-Ponty (2002: 131) puts it, ‘[t]o be a body, is to be tied to

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a certain world’. This phenomenological understanding of human corporeality is implicit in most of what follows. It allows me to suspend or ‘bracket’ the takenfor-granted negativity of impairment without disembodying the human being – an approach that has also been promoted by Paterson and Hughes (1999; for a more recent discussion see Scully 2009). I will explicitly revisit these points in the conclusion. Now, I will return to the ‘macro level’ once more in order to introduce the specific topic of discourses on disability and sexuality that will be analysed in the second part of the chapter.

Disability and sexuality State socialism was reluctant to talk about sex. As Phillips (2010: 176) points out in relation to the former Soviet Union, ‘questions of gender and especially sex were a closed book throughout much of Soviet history’. This reluctance characterised the Soviet Bloc as a whole, where silence was imposed on public discussion of these issues and even on the open admission of sexuality (Tomova 2009: 146). Such silencing was even more pronounced in Bulgaria than in East Germany or Hungary, for example, because of the relatively greater degree to which the country was closed off from Western cultural influences. After 1989, discourses on sex and sexuality were quickly and effectively normalised and liberalised. Nevertheless, disabled people have remained excluded from such liberalisation, as if continuing to live under the state socialist taboo.7 Of course, the cultural desexualisation of disabled people is by no means a specifically state-socialist or specifically Bulgarian phenomenon. It is characteristic of Western modernity in general, where disabled people have consistently been regarded as ‘sexless beings’ – ‘aesthetically neutered objects of benevolence and assistance’ (Hahn 1990: 314). Yet the Bulgarian case can furnish important insights into the mechanisms of rendering disabled people ‘sexless’, especially given the physiognomy underlying Bulgarian disablism outlined in the previous section. In such an analysis, differences from Western countries may be easier to spot (cf. Shakespeare et al. 1996) than those from the countries of the former Soviet Bloc, where similarities seem to prevail, although the available information is scarce (Phillips 2010:182–83; see also Iarskaia-Smirnova 2002). By speaking publicly about disabled people’s sexuality, Bulgarians break an important cultural taboo that, although genealogically traceable to state socialist ‘puritanism’, transcends its boundaries. This is the tacit prohibition on associating issues related to sex with issues related to disability. Western modernity has exempted certain groups from this interdiction, but their membership has almost exclusively been confined to experts in the ‘helping’ domain: ‘There is quite an industry producing work around the issue of sexuality and disability, but it is an industry controlled by professionals from medical and psychological and sexological backgrounds’ (Shakespeare et al. 1996: 3). Hughes (2000: 564) also points out that, apart from popular prejudice, the ‘sexual invalidation of disabled people is mediated by medical knowledge’. The corollary is that discourses related to disabled people’s sexuality have been heavily individualised, professionalised and/or pathologised. A ‘regime of truth’ (Foucault 1980: 131) has

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been constituted, regulating what can legitimately be said and who can legitimately say it. This regime regulates Bulgarian public discourse too, perhaps to a greater extent than in most other European countries, including some of the Eastern European ones.8 Consequently, the mere bringing of the topic of disability and sexuality in a non-expert public context is already a subversive act, a challenge of dominant mechanisms of truth production (cf. Hahn 1990: 312– 13). Such an act becomes even more subversive when the person speaking is himself or herself [self-identified as] disabled, for it then becomes an instance of reclaiming the voice (Milner 2011) – a cornerstone of individual and collective empowerment and emancipation. What is needed to make such subversive and empowering acts possible? Spaces for alternative public deliberation are an important foundation because they provide discursive ‘clearings’ (I am borrowing the term from Heidegger 1962: 171, 401–2) where disability issues can be addressed in non-expert – and, accordingly, non-pathologised and/or non-paternalistic – ways. Few such ‘clearings’ have existed in the 20 odd years of the Bulgarian transition. Among them were the periodicals edited and published by the Center for Independent Living in Sofia, a Bulgarian non-profit, non-governmental organisation of disabled people founded in the mid-1990s with the mission ‘to provide disabled people with the support they need to achieve independent and complete human living’.9 The Center’s periodicals included the monthly newsletter Independent Living, of which 52 issues were published in 1999–2004; the magazine Integral, of which nine issues were published in 2001–4; and the monthly magazine Independent Living, intended to succeed the previous two, of which six issues were published in the second half of 2004. This prolific publishing endeavour came to a halt in December 2004.10 All of the Center’s periodicals contained a special section entitled ‘Taboo’. It was explicitly designated for discussing openly and publicly disability-related issues that usually remained silenced, including issues related to disabled people’s sexuality. I will take as my example an autobiographical essay that first appeared in the Integral magazine in 2002 and was subsequently reprinted in the Independent Living newsletter in 2003. The four-page essay, entitled ‘I, my impairment and sex’ (Az, moeto uvrezhdane i seksat), was written by Nina Zhisheva and appeared in the ‘Taboo’ section of both periodicals. This piece deserves to be read not only as a text, but also as an event. It was a venture not simply into uncharted territory, but also into one that has for a long time been dominated by expert knowledge and power. The rich and multi-layered essay is thus an instance of the aforementioned ‘reclaiming the voice’. Below, I reference the text with page numbers only; the translation from Bulgarian is mine.

‘I, my impairment and sex’ Zhisheva (2002) identifies from the outset the two interrelated issues that I have already singled out – the desexualisation of disabled people and silence on the topic of disabled people’s sexuality:

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These two issues of desexualisation and silencing are aspects of the same existential-ontological problem. Zhisheva regards sexuality as an essential dimension of full human being – ‘sex really incorporates the beauty of everything human’ (Zhisheva 2002: 6). She thus hints at the mechanism for denying the status of subjects (Shakespeare et al. 1996: 3), or, more generally, the ‘ontological invalidation’ (Goodley and Runswick-Cole 2011: 608) of disabled people that is put in operation by the denial of sexuality. The violence of disablism (ibid.) which is related to this ontological invalidation is not targeted at a specific feature of the individual, but at his/her very being. Such violence is experienced by the person who comes to inhabit a world where there is ‘no place’ for her/him – an uncanny or unhomely dwelling. ‘Exclusion, even oppression is a kind of homelessness. It implies a world of bodily discomfort, of being left out in the cold’, write Paterson and Hughes (1999: 604). Zhisheva’s point is that a profound existential-ontological crisis develops when an essential aspect of one’s being is denied a place through desexualisation: ‘The woman in me had to fall asleep in order for me to live. (…) Do you understand what I was doing? Allegedly in order to live, I was slowly killing myself’ (Zhisheva 2002: 8). Where does this desexualisation of disabled people come from? What causes it? Zhisheva suggests that it comes from culture and not from nature – disabled people are not naturally asexual. This is the main thrust of her argument and it is re-articulated at several points throughout the essay: … with time I also found out something that perhaps will seem preposterous or intolerable [nelepo i nedopustimo] … or grotesque. I found out that I, a woman with impairment, think, desire, seek and have a need – a real and completely normal need – for sex. (Zhisheva 2002: 7) I was a normal person and needed sex just as much as I needed food when I was hungry or medical assistance when in pain. I needed sex just as much as everyone else. (Zhisheva 2002: 8) The desexualisation of disabled people is a question of ‘upbringing’, ‘attitudes’, ‘societal perception’ (Zhisheva 2002: 6). It is made, not given. Zhisheva also identifies the particular cultural construct that is responsible for desexualisation – the

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perception of impairment as inherently negative, as ‘something ugly that, with its very essence [sas samata si sashtnost], kills the desire for beauty’ (p. 6). ‘I was ugly. I was crippled. I was prejudged as being no good. I was not entitled to sex’ (p. 8). This negative understanding is tied to a stifling charity attitude: ‘Just about that time – as if from the Salvation Army… – good relatives and friends visited and laboured to convince me that one can live without sex’ (p. 8). But most importantly, this negative understanding is solidified through internalisation: ‘I was slowly killing myself, day after day going down, deeper and deeper into the sticky swamp of self-pity’ (p. 8). If one is not able to disregard the part of one’s self that is invested with negativity, this negativity tends to take over one’s whole being. Silence becomes self-imposed, negativity transforms into self-hatred and oppression is internalized: I resented life, fate, God, the physicians who injected me with the live vaccine against polio. I resented my doom, my ugliness, myself, nature for creating male and female persons, my natural desires. (…) I came to hate my breasts that disobediently continued to react as an erogenous zone whenever unwittingly touched. I wanted to vanish from this world, not to be there, to have never existed. (…) My God, I came to be ashamed of myself – I was deformed, incomplete, useless! I was so convinced of this ugliness and uselessness of mine that even if someone told me he had feelings about me, I just did not believe him – I thought that he did it solely out of courtesy, because he realised how much it would hurt me if he disregarded me too. (pp. 7–8) The self-hatred related to ‘internalized oppression’ (Mason 1990) comes with cynicism and is self-perpetuating – one tends to unwittingly treat others in such a way that they will react negatively: ‘I became evil and cruel and people did not like me’ (p. 8; see also p. 9). What is the way out of this vicious self-negating trap? Zhisheva’s text suggests that the solution is to recognise its imposed or constructed character and thus to restore the externality of this negativity – in other words, to denaturalise the existential-ontological negation. In disability studies, this has been aided by pointing out the disabling features of the built environment that people with impairments inhabit (e.g. Finkelstein 1980: 25–26). Some poststructuralist disability scholars have also highlighted the disabling features of knowledge/power constructs, including those concerning ‘impairment’ (Tremain 2002). Another option, suggested by the feminist strand of disability studies, has been to locate negativity in the objectifying ‘male gaze’ (Thomson 1997: 26). This last possibility is actually hinted at by Zhisheva when she refers bitterly to ‘those who did not see the woman in me but noticed only my deformed bottom and the apparatuses’ (p. 8) – ‘[b]ecause men judge whether a woman is “good” by the size of her breasts, the length of the legs and the behind’ (p. 7). But Zhisheva does not elaborate this critique of sexual objectification and its relation to disability. Instead, she chooses to focus on the technical aids – the orthopaedic leg braces – she utilises in order to get about:

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This attitude towards the leg braces is ambivalent. On the one hand, they provide independence, on the other hand, they are ‘fetters’. Zhisheva asserts that they are not part of her, but they still ‘envelope’ her body and her soul to the point where she can feel pain in them. The reason for this ambivalence is that, while technical aids enable a person to exercise agency on one level, on another level they also ‘help to disable by working to reproduce the conditions for the making of difference and disability in the first instance’ (Moser 2006: 388–89). Similarly to the everyday environment, assistive technology embodies a corporeal norm. Consequently, it can cause the bodily difference of ‘impairment’ to seem problematic or, in other words, to dys-appear by appearing as dys-functional (Paterson and Hughes 1999: 602–4). Indeed, it is not simply that the ‘iron apparatuses’ are themselves ‘ugly’, the problem is that they make the person who uses them ‘ugly’: ‘In the beginning I tried to hide them by all means, but I was never successful – they always meanly exposed themselves and betrayed my incompleteness, my difference. They made me ugly’ (p. 7). Yet, being detachable, in both a material and cultural sense, mobility aids can also disburden the person and her body from self-hatred; they can translate self-directed hatred into object-directed discontent. More generally, as something made, as something constructed, technology testifies that the ‘ugliness’ of the impaired body is itself not given. The turning point comes with an encounter. A young man approaches Zhisheva in a disco club and asks her whether she dances. Still trapped in the self-perpetuating pattern of internalised oppression, she immediately assumes that he is mocking at her and retorts: ‘I do not dance. Don’t you see that I am an invalid’ (p. 9). Yet it turns out that he is not interested in her body, but in her soul: ‘I did not ask about your body. I asked about your soul. I cannot dance either, and I am not an invalid. No, believe me, beautiful music can make my soul really dance’ (p. 9). At that, the man looks at Zhisheva in a special way – his eyes are ‘childishly sincere’ and he does not detach them from her eyes while speaking to her (p. 9). It is this non-objectifying look, coupled with the unexpected reply, that sets Zhisheva free from self-negation. She is able, for the first time, to detach her self from the negativity carried by her orthopaedic devices: ‘Then, in this infinitely short moment, I understood – I loved through my soul and not through my legs, ugly as they were in the iron apparatuses’ (p. 9). Notwithstanding the personal transformation, it seems that this new, emancipated self is still radically disembodied. Furthermore, the detachment of the soul from the body seems to reproduce the very pattern of desexualisation that Zhisheva has criticised at the outset. Consequently, existential-ontological invalidation

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returns through the proverbial back door – the disablist negation of corporeal difference is reinscribed at the very moment of its alleged overcoming. This problem predates every attempt at disability emancipation through privileging personhood – or what has been criticised in the disability studies literature as the ‘“person first” ideology’. As Michalko (2002: 10–11) has argued, ‘[c]hoosing personhood over disability emphasizes both the strength of personhood and its separation from the body’. The corollary is that: Inclusion on the basis of privileging personhood over disability is thus never inclusionary. The difference-of-disability is always excluded in this version of inclusion. Social change is never part of such an inclusion. (ibid.: 155) There are two considerations that at least complicate such a reading of Zhisheva’s text. The first is that Zhisheva does not actually distance herself from her body but rather from her technical aids: ‘there are no orthopaedic apparatuses for the soul. The free soul just does not need them’ (p. 9). The second consideration is related to Zhisheva’s understanding of ‘soul’. It seems that her use of the notion mirrors the phenomenological concept of lived body because Zhisheva actually proposes an embodied understanding of the soul: ‘Yes, I had a soul – and she was able to dance! Yes, I had a soul and she was able to love, to make love – and to be made love to [Da, az imah dusha i tya umeeshe da obicha, da lyubi – i da bade lyubena]’ (p. 9, emphasis in the original). It is this insight that leads to the conclusive reclaiming of positive self-identity. Importantly, this newly found identity is a sexually integrated identity, one which does not deny one’s body and sexuality, but accepts and enacts them: Why did I allow myself to perceive myself as ugly, useless, deformed? This was absolutely not me! This was some other Nina, different from myself. I am Nina – with a fragrance of endless hot meadows, the ardent Nina, who also can burn hearts with her look, the exceptional Nina, the one and only, the unique. Nina, who can caress gently, who can whisper the sweetest words and make the loved one pulsate with happiness and desires. With the same happiness and desires that fill me. (p. 9) Zhisheva enhances this affirmative statement with the proud assertion of her motherhood: ‘Both of my children were conceived as a result of hot sexual experiences’ (p. 9). Thus she challenges another widespread stigma – that disabled persons, and particularly women, cannot be (good) parents: ‘Whereas motherhood is often seen as compulsory for women, disabled women are often denied or discouraged from the reproductive role that some feminists find oppressive’ (Thomson 1997: 26). The relationship between disability, sexuality, femininity and motherhood will be explored in the next section. I will finish this one with Zhisheva’s last sentence that rearticulates the fundamental existential importance

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attributed to sexuality: ‘I don’t know whether this is sex or joy, or love … The only thing I know is that it is something wonderful, something that makes us human, us – women and men’ (p. 9).

‘We talk about sex’ Let me now turn towards a collective reflection on the topic of sexuality and disability. The discussion took place on an internet forum hosted by the Bulgarian web portal, www.dir.bg. It was held under the rubric ‘We talk about sex’ (Govorim za seks). Neither the website, nor the forum, not even the rubric were specifically focused on disability-related issues – the setting was non-professional, nonspecialised and as mainstream as one can get. The mere fact that disability was discussed in the context of sexuality, rather than sexuality in the context of disability, made a difference. The discussion happened in 2004 and was renewed for a short while in 2007 with some of the original participants taking part in the later exchange as well. All the discussants participated anonymously, using nicknames instead of their real names. The personal information disclosed occasionally suggests that many of them had only a marginal interest in the topic of disability while some were relatives or friends of disabled people and only a few were disability professionals (service providers). Most importantly, several participants identified themselves as disabled, thus enacting – like Zhisheva – the aforementioned ‘reclaiming the voice’. Both male and female participants took part and no gender seems to have dominated the discussion, although gender-specific understandings did (as will be explained below). The number of participants can be estimated at 35, providing that nobody used more than one nickname, which seems unlikely. The number of comments exchanged in 2004 was 71, with further 25 added in 2007, or 96 in total. All this testifies that the topic attracted significant interest.11 There are no indications that the discussion was triggered by a specific event. It was initiated by one of the participants who formulated its subject as ‘On bodily deficiencies’, and its guiding question as ‘How many of you would accept your partner having physical impairments without this embarrassing you?’ At some point during the discussion Zhisheva’s essay was posted in full by another participant (judging by the personal information shared by this participant, it seems unlikely that it was Zhisheva herself). This posting stimulated further debate and testifies that the Integral magazine reached the mainstream. The collective and open nature of the dir.bg forum, coupled with participants’ anonymity, elicited tacit yet widespread understandings of disability and sexuality. Even statements that were deliberately provocative or purposefully exaggerated drew on culturally available knowledges. Whilst it is questionable that this open, collective and anonymous discussion produced more truth on the topic, it does seem that it did – and it still can – stimulate reflexive awareness of the mechanisms that produce and sustain such truths. As was the case with Zhisheva’s essay, the material is too rich to be comprehensively covered within the thematic and material confines of this study. Therefore, I will restrict myself to outlining several important themes

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that relate directly to the foregoing analysis – silencing and desexualisation, the meaning of impairment, medicalisation, and gender. The translations of all the comments from Bulgarian are mine; they are referenced with the latinized participants’ nicknames in brackets. Silencing and desexualisation The reflexivity hinted at in the preceding paragraph manifests itself at an early stage of the discussion. Echoing Zhisheva’s essay, the silencing of discourses that bring together disability and sexuality is explicitly recognised and thematised: ‘what you are talking about is one of the many taboos … And as a taboo it causes a spontaneous dread [uzhas] and/or denial [otrichane] in most people’ (Lilit). The dread and/or denial brought about by the topic are seen as existentially motivated. Echoing Shakespeare’s (1994) reflections on disability and disavowal of frailty, it is pointed out that impairment produces uneasiness because it is a reminder of human finitude: ‘physical impairments confront us with our own vulnerability and fragility’ (Lilit). Reluctance to engage with the topic is openly expressed by another participant who regards the issue of disability as ‘too serious and important’, concluding: ‘I do not see it as appropriate for this club [that is, the online discussion club ‘We talk about sex’]. People with impairments have too many problems for us to try to disentangle them here’ (GROZNIK 1). This statement unwittingly reproduces the already highlighted ‘regime of truth’ that regulates discourses on disability. It implies that ‘serious matters’ should be addressed by ‘serious people’ (read ‘experts’) in ‘serious settings’ (a number of such special places have existed in Bulgaria for a long time). As such, the statement is an instance of both desexualisation and silencing – in response, the initiator of the discussion retorts: ‘the unwillingness to discuss such a topic here is also a form of discrimination against people with physical problems. They too have a right to sex and they have a right to speak about it’ (High Carbon Steel). Accordingly, breaking the silence surrounding disabled people’s sexuality is aptly regarded as a prerequisite for social change, where the very inclusion of disabled people in society is at stake: It is not enough to make the public transport and the public buildings accessible for them in order to integrate them [disabled people]. Social engagement is needed too. And a change of attitude, which has to do with the mind and begins with not disregarding the topic as a taboo. (Kotkata Marta) This briefly sketched exchange revolves around the two issues that also served as points of departure for Zhisheva’s essay: desexualisation and silencing. In addition, it hints at the ways in which these disablist patterns are reproduced on an everyday level. People maintain ‘regimes of truth’ by disciplining themselves and others with regard to what can be spoken, by whom and in what settings. The exchange also illuminates the possibility and importance of resistance to these

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everyday disciplinary pressures. Such resistance is important because it addresses existential and socio-political problems like discrimination, exclusion and the disavowal of human finitude. Last but not least, the exchange testifies to the high degree of reflexivity of the discussants, facilitated, no doubt, by the possibility of publicly deliberating the issues of concern. Central among these issues is the meaning of impairment. The meaning of impairment From the outset of the discussion, impairment is regarded in negative terms, thus reproducing the hegemonic understanding of this type of bodily difference as a ‘limit without possibility’ (Titchkosky 2005: 657). The subject ‘On bodily deficiencies’ (Za telesnite nedostatatsi) frames corporeal differences in terms of disadvantage or lack. The guiding question, ‘How many of you would accept your partner having physical impairments without this embarrassing you [bez tova da vi smuti]?’ implies that impairments themselves cause distress. The negativity conveyed by such wording becomes conspicuous if one considers alternative ways of posing the question, for example: ‘What are the physical characteristics of your partner that do not comply with the norm and that attract you?’ One could also change the addressee of the utterance, again with significant consequences: ‘What are the physical oddities of yours that attract your partner?’ Questioning, in other words, has a twofold significance. On the one hand, it is indispensable for opening up discursive ‘clearings’ where phenomena can appear and become accessible. Yet, questioning also confines the discoursing parties to the local worlds thus disclosed. A symptom of such confinement is the production of tautologies like this one: ‘Bodily deficiencies are misfortune for the people who have them’ (GROZNIK 1). Even those discussants who attempt to challenge the presupposed negativity of impairment tend to fall back upon it. The reason is that this negativity is implied in the very terms that allow them to take part in the discussion in the first place: ‘It is not so much that the people themselves are those who do not accept the bodily deficiencies of their partner, but the surrounding ones, the others’ (razbiram). Note that it would be very difficult for me to ‘accept’ my bodily difference if it is regarded as deficiency in the first place. On the other hand, the negative understanding of impairment does not – and cannot – hold absolute sway over participants. Even within the naturalized negativity of impairment a degree of uncertainty is present. For example, impairment is regarded as self-evidently problematic; it is given (not made) as problematic; it is conceived as problematic outside any interpretive economy, outside culture, language, understanding, meaning: ‘It is as though we are something disgusting that does not deserve to exist. It [what we are] does not deserve [to exist], but nevertheless it is a fact’ (High Carbon Steel) And yet, High Carbon Steel also points out that ‘to have a physical problem practically means to be marked for life’. Now, to denote impairment as a ‘mark’ suggests that impairment is actually implicated in a particular interpretive economy. From such a perspective, impairment is a sign. Yet again, it is a special kind of a sign – one that cannot be effaced and has a fixed meaning.

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Nevertheless, such rendering suggests that the problem of impairment is an interpretive problem, a problem of an interpretation that has gone rigid, an interpretation lacking plasticity or flexibility: ‘my experience shows that they [disabled people] remain to a great extent confined in their own environment … mostly because other people avoid them, even if they do not want it – these are instincts’ (hose). Is then impairment something naturally negative or something culturally negative? Can it be one without being the other? Can it be both, without undermining the very distinction between ‘natural’ and ‘cultural’? Such questions implicitly challenge the negativity of impairment within the very terms that take it for granted. In addition, there are discussants who challenge this negativity explicitly: ‘what I cannot understand is why you decided that impairment is a misfortune’ (she the wolf). Some come even closer to the ‘affirmative model’ of disability (Swain and French 2000) by finding beauty in impairment: ‘One of the men who has impressed me most is blind – the curious thing is that his eyes are incredibly beautiful, beautiful blind eyes’ (SilentEnigma). The negativity of impairment is also at stake in distinguishing between ‘minor’ and ‘major’ impairments, or between ‘physical’ and ‘mental’ impairments, where the former are regarded as acceptable or even as ‘charming extra[s]’ (alexbg67), while the latter – as unacceptable, particularly in the context of intimate and/or sexual relations. A number of participants make such claims, for example: ‘Blindness and limping – OK. But imagine that you are in bed with a person who has chunks instead of arms; or with a woman who, instead of a breast, has a hole’ (seriozna 36); ‘The only and most dangerous [impairments] are mental and emotional deficiency; everything else makes the loved one even more unique’ (Sex Maniac). While as a rule such statements reproduce and reinforce disablism, they nevertheless highlight another internal instability of meaning – the scope of the concept of ‘impairment’ cannot be fixed and its boundary is subject to constant negotiations (cf. Thomson 1997: 12–15). This is also reflected in the frequent uncertainties and disputes about what counts as ‘acceptable’ or ‘unacceptable’ impairments: ‘But otherwise I also know a family where the man has had both legs amputated at the knee. He was like that when they met. And they have lived harmoniously for many years’ (seriozna 36); ‘My mother has a serious physical impairment of the right half of her body but I am always pleased to see how my father watches her with that carried-away look’ (SilentEnigma). To summarise, the online discussion incorporated numerous implicit and explicit challenges to the negative understanding of impairment – an understanding that nevertheless marks the discussion’s point of departure. Implicit challenges betray the inherent instability of attempts to fix the meaning of physical difference. Explicit challenges testify to the subversive potential of collective reflection on disability and sexuality. In both cases, the mechanisms of subversion are similar to the ones mobilised by Zhisheva in her essay – they make corporeal negativity appear less private, less natural, and/or less fixed. Nevertheless, the negative understanding of impairment retains its hegemony throughout the discussion. One of the main reasons for this is the pervasive medicalisation of impairment-related discourses and practices.

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Medicalisation Drawing on their research with disabled people in the United Kingdom, Shakespeare et al. (1996: 10) point out that ‘[i]n the realm of sex and love, the generalized assumption that disability is a medical tragedy becomes dominant and inescapable’. The medicalisation of disability is also hegemonic in Bulgaria and is among the most consistent features of the discussions on disabled people’s sexuality, even when they explicitly endeavour to challenge disablism. Disabled people, their outlook, lifestyles, life chances and life choices are consistently counterposed to those of healthy people. Below are some examples of how medicalisation manifests itself in everyday discourse, taken from the dir.bg discussion: A healthy woman, who nevertheless is marked with huge purple spots on her skin, would agree much more readily to have a relation with a blind person than someone who is impeccably beautiful (otherwise who is going to admire her beauty). (Kurator)

… it is not possible for a healthy person to fall in love with an impaired [nedagav] one, this only happens in the movies. (GROZNIK 1)

… the truth is that even if someone has been born completely healthy, nobody, absolutely no person is insured that she or he won’t be injured some day and go over to the category ‘invalid’. (Lilit)

… people with disabilities do not have problems … the healthy have problems with them. (she the wolf)

Every time [I visit the pool] I see how she swims more than all the healthy women in the pool. She has a great body, despite her problem. I admire her because of her incredible will. (Idiotche) In these examples the distinction between those who are ‘healthy’ and those who are not is used to organise different and even mutually challenging arguments about disability and intimacy. The first comment underlines the importance of appearance, engaging in what has been identified by Hughes (2000) as the ‘aesthetic invalidation’ of disabled people. The argument is furthermore gendered – it

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is a woman who is expected to be worried about appearance, an issue that I will elaborate on below. Most importantly, the possibility for intimacy is grounded in deficiency. Thus not only individuals, but also their intimate relations, are seen as governed by privation. It is not that Mariyka is attracted to Ivancho, it is that a lack of beauty is attracted to a lack of sight. The second comment rearticulates this conviction in negativity-driven intimacy. Disabled people are lumped together on the basis of pure and simple privation – they are alike because they all lack something. The third comment is of a different sort – it highlights the universal precariousness of the human condition, articulating a reminder of finitude that is supposed to enhance acceptance and understanding of difference. Similarly intended, the fourth comment points towards the attitudinal barriers that create problems for disabled people. Finally, the fifth comment attempts to challenge negative perceptions of disability by rendering it in heroic terms, in terms of ‘overcoming’ – a strategy that nevertheless takes the negativity of impairment for granted. Notwithstanding their differences, all these statements about disabled people’s bodies, identities, relationships and lives invoke the notion of ‘health’. Crawford (2006: 403) has pointed out that ‘[i]n modern societies, the meaningful practice of health is inextricably linked to the science, practice and layered meanings of biomedicine’. The persistent recourse to ‘health’ is then both a manifestation and an effect of medicalisation, especially when disability-related issues are concerned. This becomes clear in cases where medicalisation is bound up with the belief in reproduction as the ultimate purpose of life. Although pro-natalism has been in decline since the beginning of the Bulgarian transition, 74.2 per cent of female and 67.9 per cent of male Bulgarians, responding to the European Values Study of 2008,12 still maintained that a woman needs to have children in order to fulfil herself as a person (Pamporov 2009: 162). Some of the participants in the dir.bg discussion reproduce these values in uncompromising terms: ‘the main aim of men and women getting together is to have children’ (Kradets na sartsa). Accordingly, it is suggested that disabled people are excluded from sexual discourses and practices due to: our instinctive striving to ‘pair’ with healthy partners – in order to secure healthy genes, guaranteeing healthy offspring. True, not every physical impairment is genetic – and even if it is, it does not necessarily preclude the person from creating completely healthy children. But here we are speaking about instincts and primary reactions which for most of the people are not conscious and thought through [a]nd which serve the purpose of our survival as a biological species over the course of evolution. (Lilit) In this vision, ‘offspring’ provides a fixed teleological point of reference for human existence. The meaning of human life is to reproduce itself on the biological level – i.e. ‘to secure healthy genes, guaranteeing healthy offspring’ or, more generally, to survive as a species. Notably, such an understanding wholeheartedly

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espouses the norm of health and it is indeed hard to imagine modern reproduction outside the purview of medical professionals, institutions and technologies (cf. Holm 2009). Against this background, the differences associated with impairment seem problematic. The reason is that, according to Lilit, impairment is instinctively equated with lack of health – a lack that is seen as transferable to offspring. Consequently, suggests Lilit, people with impairments tend to be automatically excluded from the reproductive equation, and with it – from discourses and practices of sexuality. In sum, the medicalised notion of health imposes a hierarchical classificatory order on human diversity through reference to a norm – ‘healthy partners’, ‘healthy genes’, ‘healthy offspring’ or ‘healthy children’. It thereby impairs the ability to imagine intimate and/or sexual relations without constantly referring to the ‘naturally given’ ideal of able-bodiedness. Besides being medicalised, this ideal is also gendered, which significantly adds to its rigidity and power. Gender Despite inclusion of women in non-domestic labour, the state-socialist regime remained patriarchal in many important respects (Tomova 2009: 134–36). Postsocialist societies have reasserted these patriarchal values in a process of ‘retraditionalization … where women have been ushered back into hearth and home, while men play the dominant roles in the new market economies and new political structures’ (Phillips 2010: 178). In her analysis of disability in present-day Ukraine Phillips (2010) has convincingly shown how disabled Ukrainians negotiate their identities within this male-centred regime of knowledge/power, especially when sexuality is concerned. Similar considerations have been put forward by Iarskaia-Smirnova (2002) with regard to disability and sexuality in contemporary Russia. It is therefore unsurprising that many of the participants in the dir.bg discussion reproduced patriarchal understandings about the roles of men and women in society. In a world dominated by masculinist visions and values, framing impairment in terms of ‘lack’ parallels how the feminine is also understood in terms of ‘lack’. Thus ‘[b]oth the female and the disabled body are cast as deviant and inferior; both are excluded from full participation in public as well as economic life; both are defined in opposition to a norm that is assumed to possess natural physical superiority’ (Thomson 1997: 19). Indeed, the perception of disabled people, male and female alike, as weak, incapable or lacking is often enhanced by feminising the bodily difference of impairment: ‘What better way to exclude a legally blind boy than to feminize the biology of his eyes? What better way to exclude me from the “guys” than to castrate me – “cunt eyes”‘ (Michalko 2002: 20–21). On the other hand, the lack associated with being a woman in a man’s world is often perceived as the ultimate impairment. Take, for example, the following playful exchange, lavishly decorated with smiling and winking faces in the original: ‘Well done, lass!!!’ (she the wolf, responding to a comment by Jolee) – ‘What lass, she has an internal impairment (of the hymen).’ (O!Sag) – ‘I love people with a sense of humour. You are right, my hymen is irreparably impaired’ (Jolee).

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Another aspect of the male-centred culture is the association of masculinity with active agency and femininity with aesthetic appearance. Accordingly, the questions asked with regard to disabled people’s sexuality tend to follow two distinct, gender-specific formulas: (i) Can disabled men be sexually active despite their impairments? (ii) Can disabled women be sexually attractive despite their impairments?13 On the one hand, disabled men’s sexuality is defended with respect to potency or the ability to perform sexually: ‘We are greater lovers than some of the healthy who are filled with complexes to the edges of their hair’ (neponosim). If the presentation of a man is important, it is so only insofar as it manifests an ability to display sexual potency, physical strength and/or economic power: ‘Well, as the saying goes, “The true man is recognized even when naked”, so why care about [bodily] deficiencies’ (Sex Maniac). On the other hand, the sexuality of disabled women is defended (or denied) with respect to aesthetic appearance, as suggested in the comment cited above about the hypothetical woman with ‘huge purple spots on her skin’ (Kurator). Feminine appearance is seen as important in order to attract sexual attention and action. Reproducing and embodying this pattern, the Bulgarian transition has given birth and popularity to an odd couple: a stocky man dressed in trainers and tracksuit with a crew-cut haircut and an obligatory golden chain around his thick neck, accompanied by a slender woman with a fancy haircut, high heels, glossy clothing and expensive makeup. Disabled Bulgarians are excluded from this embodied ideal, where the masculine power to act complements and is complemented by the feminine ability to become an object of action. Indeed, similarly to the feminine body, the impaired body is also objectified; but while the feminine body is objectified as a sexual object (Young 2005: 38–44), the impaired body is objectified as an asexual object (Hahn 1990: 315), mostly within medicalised ‘regimes of truth’. This kind of asexual objectification is at the heart of the already discussed desexualisation of disabled people. Things get more complicated when familialist and reproductive expectations are added to the patriarchal mix. Familialism – the view that the nuclear family (comprising of a father, a mother and child/ren) is the defining element of a good life – is still strong in Bulgaria. Summarising data from the European Values Study of 2008, Bulgarian sociologists point out that ‘[d]espite the crisis of the family institution, the family continues to be an absolute value [bezprekoslovna tsennost] for the Bulgarians’ (Pamporov 2009: 167; see also Tomova 2009: 143). In such a context, women are expected to be good mothers as well as attractive sexual objects. For some discussants these two roles collide: ‘It is just that I desire the woman who stays with me to be perfect, but if she is perfect, she will not be a good mother of her children … You know the saying, better an “unworthy” [nestruvashta] woman in your hands and in your home with the children than a beautiful, intelligent and bright one outside’ (HishtniK). Other discussants see women’s sexual appeal as a prerequisite for reproduction: ‘A woman, no matter how hollow her nut is [sic], has no problems with reproducing providing she has big tits, a tight body and nice butt’ (High Carbon Steel). Notably, ‘[t]he same goes for a man, but in this case it is money which can secure him reproduction’

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(High Carbon Steel). The appearance vs. agency dichotomy is clearly expressed here. Women are sexually valuable when aesthetically attractive and men when they are economically potent. In addition, sexuality is reduced to an instrument for procreation – a position which, again, excludes disabled people, for they as a rule tend to be ‘instinctively’ (Lilit) left out of the reproductive equation. These gendered expectations are not fixed. Sometimes, it is disabled men‘s sexuality that is salvaged through recourse to ‘beauty’: ‘Is a man like Andrea Bocelli not beautiful? Does the fact that he is blind make him ugly or rather different but still beautiful?’ (razbiram). There are also those discussants who, similarly to Zhisheva, question the sexual objectification of women (but note the structural similarity with Kurator‘s comment about ‘purple spots’ and blindness): ‘Do you make love to a woman only because of her body? Aren’t you attracted by her eyes, her radiance, her internal world, her sensibility, her principles, etc. Isn’t it possible to fall in love with all these things and thus to become blind to her impairment?’ (debi). Notwithstanding these occasional challenges, the gendered expectations of the male-centred worldview remain hegemonic throughout the discussion. Together with the taken-for-granted negativity of impairment and medicalisation, these rigid gendered expectations contribute to the desexualisation and the attendant existential-ontological invalidation of disabled people.

Concluding remarks In this chapter I explored the conjunction of disability and sexuality, drawing on examples from postsocialist Bulgaria. I focused on the social, political and cultural aspects of this intertwining, but I also looked at it in existential and ontological terms. The overall aim was to show how disablism is perpetuated and/or challenged within common, everyday understandings of the body, and, more specifically, of the bodily difference of impairment. These understandings were elicited by looking at non-expert public discourses on disability and sexuality. Two sources of information were used – an autobiographical essay and an internet discussion. Their analysis highlighted several general points. Firstly, the topic of disability and sexuality is silenced, mainly by subjecting it to an expert-centred ‘regime of truth’. This silencing is directly related to a pervasive desexualisation of disabled people that is existentially-ontologically invalidating. Secondly, in the rare instances when they emerge, non-expert public discourses on disability and sexuality tend to be medicalised, thus reflecting the hegemony of medical knowledge, experts, institutions, technologies and practices in the domain of disability in Bulgaria. Thirdly, the bodily difference of impairment is as a rule understood in negative terms – as deficiency or lack. This understanding, supported by medicalisation, adds to the perception of disabled people as asexual beings, and accordingly, to their existential-ontological invalidation. Fourthly, impairment-related discourses are gendered along patriarchal lines. Thus genderspecific expectations informed by a male-centred worldview regulate the construction of disabled people’s identity, particularly when sexuality is concerned. All these patterns contribute to the (re)production of disablism in Bulgaria.

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At the same time, various instances of resistance to disablism were also highlighted in the context and content of Zhisheva’s essay and the dir.bg discussion. I underlined the crucial importance of opening up spaces for non-expert public reflection on disability and sexuality. The acts of disclosing and maintaining such ‘clearings’ themselves work to subvert disablist patterns. This subversion is greatly enhanced when those who are usually ‘spoken about’ – i.e. disabled people themselves – reclaim their voices by speaking publicly on their own sexuality. My analysis also suggested that the negative meanings attributed to particular bodily differences are inherently unstable. Consequently, disablism is undermined by exploiting and amplifying this instability of meaning, particularly within discourses on sexuality where corporeal understandings are pivotal. In addition, it is also important to openly and explicitly challenge the taken-for-granted negativity of impairment. Such direct attacks on disablism reach to its core, but this also means that they are prone to suffer the strongest repulse. In sum, each and every one of the aforementioned mechanisms of resistance needs to be deliberately cherished in attempts at overcoming disablism. I would like to finish this study with two methodological considerations. The first has to do with the relationship between analyses on ‘micro’ and ‘macro’ levels. Although the present study focused on the former, the critique of the everyday cannot displace structural critiques of the type outlined in the introduction, where I highlighted the broader factors underlying disablism in Bulgaria. In this sense, disability studies are very much like feminist and queer studies, conceived as: theoretical efforts to identify certain wrongful harms or injustices, locate and explain their sources in institutions and social relations, and propose directions for institutionally oriented action to change them. This latter set of tasks requires the theorist to have an account not only of individual experience, subjectivity, and identity, but also of social structures. (Young 2005: 19–20) My second methodological consideration has to do with my theoretical points of departure. I relied on two major concepts – the notion of ‘disablism’ borrowed from disability studies and the notion of the ‘lived body’ borrowed from phenomenology. While the former was explicitly used throughout the analysis, the latter was mostly implied in the ongoing refusal to take the negativity of impairment for granted. I see this refusal as crucial for challenging disablism. The notion of the ‘lived body’ is useful for disability studies because it provides for such a refusal while retaining an embodied understanding of human being. It cannot be denied that physicality delimits human capacities (cf. Shakespeare and Watson 2001), but neither can it be denied that these limits appear as limits and matter only within what phenomenologists call ‘clearing’ or ‘world’ – a ‘context within which relations of objects and activities are organized and make sense’ (Wrathall 2006: 38). From this perspective, any ‘excess’ with respect to meaning is itself constituted within the meaning-giving context: ‘Sense itself opens the difference to what is

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not sense, without transforming it into another piece of sense’ (Steinmann 2011: 48, cited in Polt 2011: 49). Even if impairment is conceived in terms of such ‘excess’, it still cannot be reduced to a ‘limit without possibility’ (Titchkosky 2005: 657). On the most general level, what exceeds meaning has the unique power to feed back and refresh it: ‘Encounters with excess can develop into crisis points, historical events in which meaning is refreshed or transformed; such events open new realms of meaning that, in turn, make it possible for us to encounter excess afresh’ (Polt 2011: 28) More specifically, bodily differences – including those identified as ‘impairments’ – bear the potential to refashion not only our customary identities and practices, but also the worlds we inhabit. In a disablist culture there is a pressing need to realise this potential through strategies for recognition and affirmation. An important first step is breaking the silence surrounding the conjunction of disability and sexuality.

Notes 1 This is testified by the persistence of gender inequalities during state socialism despite the high inclusion of women in non-domestic labour activities (Tomova 2009). Also revealing in this respect are the attempts at solving the problems of difference through violence, as reflected in the forceful assimilation of Bulgarian Turks at the end of the Todor Zhivkov’s rule (Curtis 1992). 2 Applied to a person, the word invalid has the same negative connotations in Bulgarian as in English. Bulgarians usually use the word uvrezhdane to refer to the bodily difference denoted by British social model theorists as ‘impairment’ (Oliver 1996). In this sense, uvrezhdane is also used interchangeably with the word nedag. Following the social model of disability (ibid.), I translate uvrezhdane, as well as nedag, as ‘impairment’. Yet in the instances of more ambiguous usage I translate uvrezhdane as ‘disability’ in order to preserve the allusion to the social aspects of the phenomenon implied in the original utterance. My translation is then simultaneously an interpretation informed by the social model of disability. 3 The website of the Bulgarian Commission for Protection against Discrimination is available at www.kzd-nondiscrimination.com, accessed 3 December 2012. 4 My understanding of the term is very similar to the one outlined by Holm (2009). Drawing on Peter Conrad, Holm (2009: 33) defines medicalisation as ‘the process that occurs when a given area of human activity is defined socially as falling under the proper purview of medicine’, including ‘any state that such a process might lead to’. Thus medicalisation ‘involves allowing the medical profession sole or pre-eminent power to define a given issue, decide whether or not it is a problem, and define the appropriate (therapeutic) solution to the problem’ (ibid.). Holm also highlights the intrinsic relationship between medicalisation and social control: ‘the process of medicalization allows the medical profession to take control of an area of life that other parties, often ordinary people previously controlled’ (ibid.). 5 The genealogy of these organisations is far from straightforward. Some, like the Union of the Deaf (www.sgbbg.com) or the Union of the Blind (ssb-bg.net), came into existence well before 1944, albeit under different names. Others, like the National Consumer Cooperative of the Blind (www.npksb.com), emerged during state socialist times. Yet others, like the Union of the Invalids (www.disability-bg.org) or the Bulgarian Association for Persons with Intellectual Disabilities (bapid.com), were founded after the fall of the regime in 1989. The extent to which the state socialist ideology and practice influenced the values, ideas and activities of these organisations

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is not immediately obvious and requires a separate analysis. All links accessed 3 December 2012. This frailty of grassroots organisations is an aspect of a more general phenomenon: ‘The weakness of civil society, in the sense of associational life, remains a striking feature of the postcommunist world’ (Outhwaite 2011: 8). Outhwaite cites Howard (2003: 13–14), who has pointed out that ‘[a]lthough the breakdown or survival of democracy may not be at stake, the quality of post-communist democracy suffers as a result of the weakness of civil society, as post-communist citizens become increasingly alienated from the political process, while simultaneously lacking the institutional leverage that organizations might provide’. This situation suggestively parallels the one concerning homosexuality: ‘The prohibition of discrimination on the basis of sexual orientation is incorporated in a numbed of normative acts, and particularly in the Law for Protection against Discrimination. At the same time, in the country there is actually no public debate on the problems of homosexuals as problems of power relations in a society that is dominated by hierarchical sexist attitudes’ (Tomova 2009: 147). For a comparative analysis of disability-related policies and practices in 14 European countries see International Disability Network 2007. The website of the Center for Independent Living is available at http://www.cil.bg/en, accessed 3 December 2012. I have collaborated with the organisation throughout the first decade of the new millennium, although I have not been directly involved in its publishing programme. All the periodicals of the Center were supported by foreign donors through programmes for civil society development in Bulgaria – none enjoyed any financial support from the Bulgarian state. Consequently, when the foreign programmes ended, the Center’s periodicals disappeared, for they could not sustain themselves through free market mechanisms. As in other cases related to cultural and social policy issues, the market proved to be a problematic regulator. For as far as the ‘public good’ was concerned, the Center’s publications had an important and pioneering function – to open up a public space for the articulation of subjugated knowledges. In a similar fashion to state socialist taboos or outright repressions – and similarly to the ‘regime of truth’ of medicalisation – the market can also silence voices. The archive can be found online at http://clubs.dir.bg/showthreaded.php?Board=talka bout&Number=1942347955, last accessed 12 January 2012. European Values Survey, available at www.europeanvaluesstudy.eu, accessed 3 December 2012. Phillips (2010: 176) makes the following observation, reflecting on a mobility seminar for wheelchair users in Ukraine: ‘whereas most of the men at the meeting used active wheelchairs, the majority of women participants used large, so-called “room” or home wheelchairs, or lever-drive chairs operated by pumping two levers with the hands’. Thus the assignment of gendered lifestyles is mediated by assistive technology. What are these lifestyles? According to Phillips (2010: 186), ‘[g]oing out in public (being mobile) is seen as an important aspect of masculinity, but women seem more worried by their visible imperfections and are given more leeway to stay at home in their “traditional” setting’.

References Angelova, L. (2008) ‘The road to Mogilino: The ideology of normality and Bulgaria’s abandoned children’ [online publication, in Bulgarian]. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/nabliudatelnitsa/Putqt_kum_Mogilino. pdf, accessed 3 December 2012.

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BHC (2011) Human Rights in Bulgaria in 2010. Sofia: Bulgarian Helsinki Committee. Available online at: http://www.bghelsinki.org/media/uploads/annual_reports/2010-en. pdf, accessed 3 December 2012. Campbell, F. K. (2009) Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan. CIL (2002) From Handicapped People to Persons with Disabilities [in Bulgarian]. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/library/ pregled/pregled_2001.pdf, accessed 3 December 2012. CIL (2003) Disability – a Deficit or a Survival Means. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/english_docs/survey_2002_en.pdf, accessed 3 December 2012. CIL (2004) Equal Opportunities through Access to Social Services. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/english_docs/survey_2003_en.pdf, accessed 3 December 2012 CIL (2009) Evaluation of the Assistance Services for People with Disabilities in Bulgaria [in Bulgarian]. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/nabliudatelnitsa/ocenka_asistentski_uslugi_BG.rar , accessed 3 December 2012. Crawford, R. (2006) ‘Health as a meaningful social practice’, Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 10(4): 401–20. Curtis, G. E. (ed.) (1992) Bulgaria: A Country Study. Washington: Library of Congress. Available online at: http://lcweb2.loc.gov/frd/cs/bgtoc.html, accessed 3 December 2012. Finkelstein, V. (1980) Attitudes and Disabled People: Issues for Discussion. New York: World Rehabilitation Fund. Foucault, M. (1980) Power/Knowledge: Selected Interviews and Other Writings, 1972–1977. New York: Pantheon Books. Goodley, D. and Runswick-Cole, K. (2011) ‘The violence of disablism’, Sociology of Health & Illness, 33(4): 602–17. Grigorenko, E. (1998) ‘Russian “defectology”: Anticipating perestroika in the field’, Journal of Learning Disabilities, 31(2): 193–207. Hahn, H. (1990) ‘Can disability be beautiful?’ in M. Nagler (ed.) Perspectives on Disability. Text and Readings on Disability. Palo Alto, CA: Health Markets Research, pp. 310–19. Heidegger, M. (1962 [1927]) Being and Time, trans. J. Macquarrie and E. Robinson. Oxford: Blackwell. Heidegger, M. (2001) Zollikon Seminars: Protocols, Conversations, Letters, ed. M. Boss, trans. R. Askay and F. Mayr. Evanston, IL: Northwestern University Press. Holm, S. (2009) ‘The medicalization of reproduction – a 30 year retrospective’, in F. Simonstein (ed.) Reprogen-Ethics and the Future of Gender. London and New York: Springer, pp. 29–36. Hughes, B. (2000) ‘Medicine and the aesthetic invalidation of disabled people’, Disability & Society, 15(4): 555–68. Iarskaia-Smirnova, E. (2002) ‘The stigma over the sexuality of “invalids”’, in E. Zdravomyslova and A. Temkina (eds) In Search of Sexuality [in Russian]. St Petersburg: ‘Dmitrii Bulanin’ Publishing House, pp. 223–44. Iarskaia-Smirnova, E. (2011) ‘“A girl who liked to dance”: Life experiences of Russian women with motor impairments’, in M. Jäppinen, M. Kulmala and A. Saarinen (eds) Gazing at Welfare, Gender and Agency in Post-socialist Countries. Newcastle upon Tyne: Cambridge Scholars Publishing, pp. 104–24.

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International Disability Network (2007) International Disability Rights Monitor (IDRM): Regional Report of Europe. Chicago: International Disability Network. Available online at: http://www.idrmnet.org/pdfs/IDRM_Europe_2007.pdf, accessed 3 December 2012. Mason, M. (1990) ‘Internalized oppression’, in R. Reiser and M. Mason (eds) Disability Equality in Education. London: Inner London Education. Merleau-Ponty, M. (2002 [1945]) Phenomenology of Perception, trans. C. Smith. London: Routledge. Michalko, R. (2002) The Difference that Disability Makes. Philadelphia: Temple University Press. Milner, L. (2011) ‘Voice giving (way)’ Disability Studies Quarterly, 13(3). Online article available at http://dsq-sds.org/article/view/1681/1591 (accessed 1 July 2013). Mladenov, T. (2004) Of People and People. Analysis of the “Assistant for Independent Living” Campaign of the Center for Independent Living – Sofia [in Bulgarian]. Sofia: Center for Independent Living – Sofia. Available online at: http://www.cil.bg/userfiles/ library/otdelni/za_horata_i_horata_2004.pdf, accessed 3 December 2012. Mladenov. T. (2009) ‘Institutional woes of participation: Bulgarian disabled people’s organisations and policy making’, Disability & Society, 24(1): 33–45. Mladenov, T. (2011) ‘Deficient bodies and inefficient resources: The case of disability assessment in Bulgaria’, Disability & Society, 26(4): 477–90. Moser, I. (2006) ‘Disability and the promises of technology: Technology, subjectivity and embodiment within an order of the normal’, Information, Communication & Society, 9(3): 373–95. Oliver, M. (1996) Understanding Disability: From Theory to Practice. London: Macmillan. Outhwaite, W. (2011) ‘Postcommunist capitalism and democracy: Cutting the postcommunist cake’, Democratic Socialism, 1(1): 1–23. Pamporov, A. (2009) ‘The crisis of marriage as an institution, familialism, and the new forms of family’, in G. Fotev (ed.) European Values in Bulgarian Society Today [in Bulgarian]. Sofia: St. Kliment Ohridski University Press, pp. 154–71. Panayotova, K. and Todorov, K. (2007) Integration and the Law for the Integration of People with Disabilities [in Bulgarian]. Sofia: Center for Independent Living. Available online at: http://www.cil.bg/userfiles/library/otdelni/integratsiqta_i_zakonut. pdf, accessed 3 December 2012. Panov, L. and Genchev, G. (2011) Assessment of the Mechanism for Allocating Subsidies from the Budget of the Republic of Bulgaria to NGOs [in Bulgarian]. Sofia: Bulgarian Center for Not-for-Profit Law. Available online at: http://www.bcnl.org/uploadfiles/ documents/report_budget_subsidies_in_bg_with_all.doc, accessed 3 December 2012. Paterson, K. and Hughes, B. (1999) ‘Disability studies and phenomenology: The carnal politics of everyday life’, Disability & Society, 14(5): 597–610. Phillips, S. (2010) Disability and Mobile Citizenship in Postsociallist Ukraine. Bloomington and Indianapolis: Indiana University Press. Polt, R. (2011) ‘Meaning, excess, and event’, Gatherings: The Heidegger Circle Annual, 1: 26–53. Schillmeier, M. (2010) Rethinking Disability: Bodies, Senses and Things. New York: Routledge. Scully, J. L. (2009) ‘Disability and the thinking body’, in K. Kristiansen, S. Vehmas and T. Shakespeare (eds) Arguing About Disability: Philosophical Perspectives. London: Routledge, pp. 57–73. Shakespeare, T. (1994) ‘Cultural representation of disabled people: dustbins for disavowal?’, Disability & Society, 9(3): 283–99.

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Shakespeare, T., Gillespie-Sells, K. and Davies, D. (1996) The Sexual Politics of Disability: Untold Desires. New York: Cassell. Shakespeare, T. and Watson, N. (2001) ‘The social model of disability: An outdated ideology?’, in S. Barnartt and B. Altman (eds) Research in Social Science and Disability, Vol. 2. Stamford, CT: JAI Press, pp. 9–28. Swain, J. and French, S. (2000) ‘Towards an affirmation model of disability’, Disability & Society, 15(4): 569–82. Thomas, C. (2004) ‘How is disability understood? An examination of sociological approaches’, Disability & Society, 19(6): 569–83. Thomas, C. (2007) Sociologies of Disability and Illness. Basingstoke: Palgrave Macmillan. Thomson, R. G. (1997) Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press. Titchkosky, T. (2005) ‘Disability in the news: A reconsideration of reading’, Disability & Society, 20(6): 655–68. Tomova, I. (2009) ‘Those who are different: Between stigma and recognition’, in G. Fotev (ed.) European Values in Bulgarian Society Today [in Bulgarian]. Sofia: St. Kliment Ohridski University Press, pp. 119–53. Tremain, S. (2002) ‘On the subject of impairment’, in M. Corker and T. Shakespeare (eds) Disability/Postmodernity: Embodying Disability Theory. London: Continuum, pp. 32–47. Wrathall, M. (2006) ‘Existential phenomenology’, in M. Wrathall and H. Dreyfus (eds) A Companion to Phenomenology and Existentialism. Oxford: Blackwell, pp. 31–47. Young, I. M. (2005) On Female Body Experience: “Throwing Like a Girl” and Other Essays. Oxford: Oxford University Press. Zhisheva, N. (2002) ‘I, my impairment and sex’ [in Bulgarian], Integral, No. 2: 6–9.

8

Citizens or ‘dead souls’? An anthropological perspective on disability and citizenship in post-Soviet Ukraine Sarah Phillips

In this chapter I examine Ukraine’s burgeoning disability rights movement through the lens of citizenship to illustrate the complex processes through which certain categories of people (here, persons with disabilities) are transforming themselves—and being transformed—into particular types of citizens in a changing welfare state.1 I take an institutional and relational approach to understanding citizenship, a tack that has recently been used by scholars such as Margaret Somers (1994, 1995) and Allison Carey (2003), to shed light on the complex intersections of agency, power, and personhood that struggles for post-socialist social justice entail. The chapter is based on ethnographic research I have conducted in Ukraine since 2002, research that centers primarily on mobility disability (i.e. persons in wheelchairs and others with limited mobility).2 As a relatively visible group with (seemingly) definable “needs” (i.e. lifts, accessible transport, specially designed living spaces, access to places of employment), during the last decade persons with mobility disabilities have been primary targets of intervention by government agencies, medical and rehabilitation professionals, human rights advocates, and others. Although societies for the deaf and blind were established and active in the Soviet Union, mobility disability has come under public scrutiny only recently, and mobility disabled persons are at the forefront of the disability rights movement in Ukraine today. Persons and groups with mobility disabilities thus form a locus where diverse disability discourses, models, and practices intersect (Frank 2000; Hockenberry 1995; Kohrman 2005; Langan 2001).3

Theorizing citizenship In recent years there has been a revival in studies of “citizenship,” especially among scholars interested in the social justice struggles of disempowered groups. These inquires have both built on and critiqued the work of T. H. Marshall, whose seminal volume Citizenship and Social Class (1992, originally published in 1950) moved notions of citizenship beyond the narrow scope of individual liberties to include considerations also of economic and social rights. Recently, scholars of citizenship have focused on a range of marginalized groups to challenge and refine Marshall’s liberal and abstract notion of “rights”: the poor (Lister 1990),

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ethnic minorities (Smith 1989), and women (Pateman 1989), for example. Anthropologists have extended Marshall’s three-way distinction between civil, political, and social rights to treat citizenship more broadly as the politics of belonging. This approach expands the repertoire of citizenship studies to include questions of ethnicity, migration, transnationalism, consumerism, embodiment, nationhood, labor, media, selfhood, vulnerability, kinship, gender, and others. A small but growing body of critical literature has begun to take up questions of citizenship in relation to disability in a variety of societies (Barton 1993; Beckett 2005; Bérubé 2003; Carey 2003; Danermerk and Gellerstedt 2004; Das and Addlakaha 2002; Jayasooria 1999; Kjellberg 2002). This work on citizenship and disability treats citizenship as a fluid and contingent concept that is dependent on a range of institutional, societal, and personal variables. Citizenship is thus examined as a “contested truth” whose meaning is historically and politically constructed (Somers 1994: 65). A relational approach has also been articulated by those who emphasize the links between the self and society, which struggles for citizenship inevitably entail. Citing Quicke (1992), Barton (1993: 241) notes that, “The question of citizenship raises the issue of the nature and relationship between the subjective experience of self and self-development and the public aspect of self as an agent of community relations.” Drawing on similar themes, Kjellberg (2002) has explored how citizenship for persons with mental disabilities in Sweden entails living and interpreting one’s own personal environment (home, work, family), and the general environment (services, structures, social networks, attitudes). In this article, I employ this kind of relational approach to explore debates about disability and citizenship in post-Soviet Ukraine. I also utilize Nancy Fraser’s (1995, 1997) famous theory of justice as a triad of redistribution in the economic sphere, recognition in the socio-cultural sphere, and representation in the political sphere, a framing of citizenship that is particularly fruitful for examining the “transitioning” states of the former Soviet bloc. In Ukraine, stakeholders in the disability rights movement draw on a range of discourses to make certain claims to full citizenship for people with disabilities and to forward political and social agendas. Several of these understandings have developed out of interventions that international disability rights groups have introduced in Ukraine (especially from Scandinavia, the United States, and Canada), and the interactions and discussions between local activists and international partners that these interventions have produced. Other discourses have developed more out of the historical, economic, and social contexts unique to post-Soviet societies. Each of these narratives defines the problem of disability discrimination differently, and places emphasis on a certain set of citizenship rights. By excavating these discourses, and especially by tracking how they are utilized by various groups and persons, we can gain insight into the salient and competing ideologies that drive the contemporary disability rights movement. We can also better understand the complicated structures of power at play at the level of formal, but especially informal, institutions. For several reasons, focusing on disability provides particularly good insights into changing post-Soviet negotiations of citizenship. In most contexts, being a

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citizen assumes certain kinds of normative behaviors (working, taking part in and contributing to social life), and disability is often framed as preventing this “normal” position and the fulfillment of basic human responsibilities. But, influenced by international disability rights narratives, some disability rights activists and state officials have begun to espouse a social model of disability, where disability is understood not as a problem or defect of the individual, but as socially produced stigma and the product of disabling political, social, and economic environments. Such a stance shifts the terms of citizenship debates—from dependence to independence, compensation to contribution, seclusion to inclusion, needs to rights—in ways that bring into vivid relief how state-citizen relations are being reimagined and reorganized in the new market economies of post-socialist states. Importantly, disability is an area where individualism emerges as an important aspect of citizenship in the context of neoliberal economic reforms, imminent welfare retreat, and the interventions of transnational disability advocacy groups. Notions of disability as something that is inherently a “social,” relational, and contextual phenomenon are prevalent among those living with disability in Ukraine. However, how exactly disability is understood, what notions of “citizenship” it produces, and how these understandings actually translate into policy, activist initiatives, and everyday life strategies, are complex questions that need to be researched. Ideas of citizenship help to assess the ways in which people with disabilities see their lives changing after socialism and to understand how these perceptions conflict or square with hegemonic (state) discourses on invalidity. Actors inside and outside the disability rights community may imagine “proper citizenship rights” for the disabled very differently. Using research methods such as in-depth interviews, surveys, focus groups, and participant observation with a range of actors—various members of disability communities, NGO directors, students, government officials, rehabilitation professionals, social workers, and others—I found that informants offer varied responses to the question of how persons with disabilities might be best positioned (and position themselves) to enjoy “full citizenship rights.”4 In considering these different visions of the politics of disablement, and varying concepts about what citizenship entails, I hope to highlight the relational quality of citizenship, and also excavate the structures of power that govern the lives of people with disabilities in Ukraine. At the end of the article I will explore further the fraught citizen-state relationships that motivate these discussions, to argue that disability rights activists become both subjects and agents as they stake claims to full citizenship in the new Ukrainian state. To contextualize these investigations, I begin with some background on disability politics in Ukraine, and then discuss some of the narratives that shape citizenship debates among disability rights activists, especially those narratives centering on economics and employment.

Disability contexts in post-Soviet Ukraine Official statistics indicate that roughly 2.64 million persons (5.8 percent of the population) in Ukraine are considered disabled (Ministry of Labor and Social

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Policy [MLSP] 2008: 28), but this statistic includes all types and levels of disability, including disability associated with the 1986 Chernobyl nuclear disaster.5 As disability rights lawyer and activist Oleg Poloziuk (2005) has stated, due to a lack of detailed statistical information the mobility disabled in Ukraine constitute an “unknown” segment of the population. Some recent studies in Ukraine report around 32,000 people with spinal and spinal cord injuries, and note that most injured persons are between 20 and 45 years old (Poloziuk 2005). According to the available statistical analyses provided by neurosurgical departments of medical institutions from 1994 to 2001, an average of 2,066 persons receive spinal cord injuries in Ukraine annually, and the incidence increases by 91 injuries each year. There are no statistics available to quantify the number of disabled children and adults who are wheelchair users as a result of disease. We know the numbers are significant since this population is provided with between 20,000 and 30,000 wheelchairs annually (ibid.).6 It is estimated by some activists that around 5,000 wheelchair users live in Kyiv, the capital city (Nina Syedina, personal communication, September 2, 2006). Interviews with persons with disabilities in Ukraine and a review of the available literature indicate that quality of life for most mobility disabled people has improved considerably since perestroika and the collapse of the Soviet Union.7 Some improvements in infrastructure and life possibilities, however, are accompanied by a range of injustices that compel many people with disabilities in Ukraine to feel as if they live in a “parallel world” where their rights to full citizenship in the new Ukrainian state are circumscribed (Phillips 2002, 2011). This parallel world is constructed at the intersection of public discourse and institutional infrastructure. The “unknown population” of the disabled is made further invisible by a hegemonic discourse that refuses to acknowledge the presence of the disabled on the political stage. My informants, for example, described how difficult it is to demand and exercise one’s formal citizenship rights when government buildings (and indeed, most buildings in the country, whether residential, business, or government) are not accessible. An investigation into accessibility noted that in 2005 the state—as represented by the State Building Committee (Derzhbud)—was actually the worst offender of laws guaranteeing the “full access of invalids to social infrastructure,” as encoded in the Law on the Basis of Social Protection for Invalids (No. 2606-III, Section 5 and Article 27) (Zhelezniak and Mashtaliarchuk 2005) and Presidential Decree No. 900 (see below), among other legislative acts. Not only do disabled citizens face physical barriers (staircases, inaccessible public transport, and barrier-ridden public spaces), they also confront discursive barriers that position the disabled as either pitiful unfortunates or undeserving “spongers,” or both. Many of my informants described at length the stigma they face as people with a spoiled identity (Goffman 1963) who look “different” and, as one young woman put it, thus “spoil the view for other people.” Members of the disability rights movement in Ukraine today, especially those groups focused on mobility disability, endeavor to break through the institutional and discursive barriers that marginalize them in Ukrainian society. Major foci of

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the movement include the improvement of medical services, the formulation of a comprehensive system of post-trauma rehabilitation, provision of suitable wheelchairs and other equipment, deinstitutionalization of children with disabilities, guaranteeing equal access to quality education, equal job opportunities, and the introduction of accessible transport and public spaces and buildings. Most of these mirror the concerns of the global organization Disabled People’s International (DPI), which has recognized and codified the following basic human rights of the disabled as essential for the full societal participation of people with disabilities: education, employment, economic security, services, independence, culture and recreation, influence or political participation, the right to life, and the right to parenthood (Barnes et al. 1999: 97). With the fall of the Soviet Union and the establishment of disability rights advocacy networks across national borders, activists in Ukraine were introduced to the “social model” of disability that has been developed in Western countries since the mid-1970s. Activists and representatives of the state increasingly draw on versions of a social model of disability to formulate new strategies for the rehabilitation of the disabled and in efforts to eradicate disabling barriers that are oppressive to people with disabilities. The following formulation by Oleg Poloziuk is representative of how the social model is conceptualized and used by many activists in Ukraine: Social adaptation, the prevention of maladaptation, and the rehabilitation of the disabled—these are problems of society, and not the individual disabled person, who does not correspond to the “norm.” Here, rehabilitation translates as “returning lost functions,” “compensating for lost possibilities,” and “a return to an active life.” Rehabilitation thus becomes a truly positive outcome: an expansion of adaptive possibilities of a socialized subject, the ability to adjust to new conditions, and to direct one’s own life. (Poloziuk 2005) This focus on the “socialized subject” has been taken up in activist circles, and thanks to the influence of a range of actors, the models of disability and citizenship embodied in Ukrainian legislation are gradually changing. Post-Soviet legislation governing disability, it could be argued, moves towards a social or empowerment model of disability that targets sources of oppression such as unequal access to education and work. On March 3, 1991, in accordance with the Law “On the Basis of Social Protection of Invalids of Ukraine,” the official definition of disability in Ukraine changed from the loss of work capability to a measurement of loss of health (Ukr. mira vtraty zdrov’ia) (Poloziuk 2004, 2005). Article Two of the Law defines an “invalid” as “a person with persistent disorder of bodily function, caused by illness, the result of a trauma, or birth defects, which result in limited activities (Ukr. zhyttediial’nost’), and in the necessity for social assistance and protection.”8 In 1992, the Ministry of Health approved the “Provision on the individual program of rehabilitation and adaptation of the invalid (IPRI),” and the “Method of

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formulating the individual plan of rehabilitation and adaptation of the invalid.” The IPRI plan represented a significant step towards a state system of rehabilitation that would focus not only on medical and technical problems of the disabled, but would integrate economic and social concerns as well. Unfortunately, a mechanism for funding the IPRI process was not approved until 2003, and even today the program has been only partially and poorly implemented (Marunych et al. 2004; Poloziuk 2005). On June 1, 2005, President Yushchenko signed a Decree (No. 900) “On Immediate Measures for Creating Favorable Conditions of Living for Persons with Limited Physical Capabilities” that outlined steps to be taken to provide people with disabilities equal access to “objects of social infrastructure.” The Decree highlighted the need for accessible public transport (including trains, cars, and school buses), parking spaces, government buildings, dormitories, underground walkways, and so on. It challenged the State Committee of Ukraine on Building and Architecture and the State Committee on Housing to begin steps for adopting European Union standards for guaranteeing persons with disabilities equal access to public spaces.9 Progress has been very slow, but accessibility standards are being enforced in some measure, especially in large urban centers such as Kyiv, L’viv, and Kharkiv where accessibility commissions have been formed, many of them staffed by members of disability communities. Overall, however, legislation is poorly enforced if at all, and persons with disabilities continue to face stigma and discrimination in their daily lives (Makharynska 2002). Changes in laws, proclamations, and Presidential decrees that seek to extend full citizenship rights to persons with disabilities are only the first step. As Oleg Poloziuk (2005) points out, self-realization involves not so much the potential possibilities offered to a disabled person (formal rights), but those that the person is actually able to use. In 2005, Valery Sushkevych (personal communication), an MP and head of the National Assembly of Disabled People of Ukraine (a coalition of nearly 140 disability rights organizations), estimated that existing laws on disability were only financed at 12–18 percent. In this context, many people with disabilities criticize the Ukrainian state for perpetuating (in reality, if not on paper) the medical/functional model from the USSR with its narrow focus on immediate post-trauma care, the provision of a (small) pension to disabled individuals, and a few trips to specialized sanatoria (institutions that are falling into a decrepit state) during one’s lifetime. In short, many see the state’s relationship to their problems as changing little, and primarily “on paper.”

Visions of citizenship In this section, I draw on ethnographic data that explores some of the rights that a range of people with disabilities in Ukraine perceive as crucial to guaranteeing them full citizenship in the changing post-socialist Ukrainian state. The narratives and vignettes presented here are indicative of many of the salient discourses on the body, sociality, personhood, the state, and the market that run through debates on citizenship and disability. Here I want to show how the everyday concerns, challenges, and successes of disabled persons—and, especially, the ways in which they

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talk about these concerns, challenges, and successes—reflect and reproduce a range of narratives linking people to institutions of the state. The situations and conversations I ponder here reflect the complex real-life effects of so-called “democratizing” processes taken up by institutions and agents of the state, and the contradictory ways in which people with disabilities are positioned (and position themselves) through such processes. Primary issues to be discussed here include economic entitlements (the politics of redistribution) and equal access to employment. Equal employment opportunities Several key issues in debates over the meanings of citizenship for people with disabilities in Ukraine are encapsulated in discourses and practices concerning disability and employment. These include questions of social welfare, independent living, economic independence, accessibility, and public perception, among others. Examining the range of narratives concerning disability and employment espoused by disabled persons and representatives of state institutions reveals how people with disabilities are variously positioned by structures of power, and how they react to such positionings. In recent years, high unemployment rates among the disabled have become a cause for concern and a target for intervention by state agencies and NGOs in Ukraine. In 2002 official statistics indicated that disabled workers only constituted 1.6 percent of the entire workforce, and only 14.5 percent of the disabled population was employed (Derzhavna Dopovid 2002: 96). Initial attempts to usher disabled workers into the workforce were made through the introduction of a 2001 change to the Law on the Basis of Social Protection of Invalids (No. 2606-III). This law requires that each employer hire a certain percentage of workers with disabilities. According to Article 20 of the law, employers who are unwilling to comply with this law must pay a fine into the All-Ukrainian Fund of Social Protection of the Disabled. These monies are then (according to the law) channeled back into programs for social, vocational, physical culture/sport, and professional rehabilitation for Ukraine’s disabled population (Derzhavna Dopovid 2002: 99). There are several loopholes in Article 20, however, that allow certain firms to avoid paying the requisite fines (Baranova-Mokhort 2005). Although some businesses in Ukraine comply with this law, others are unwilling to hire workers with disabilities, citing fear of absenteeism and expectations that disabled workers will be unable to carry out work responsibilities. Most significantly, many employers are unwilling to make accommodations for workers with disabilities, who may require architectural renovations, and special chairs and equipment, to access the workplace and perform their jobs. Employers who decline to hire workers with disabilities have two options: they may pay the requisite fine, or they may “fake” the hiring of disabled workers, an arrangement that saves costs. This entails officially hiring the worker but paying a reduced salary. The worker is usually paid half the official salary for work he or she never does. Almost every informant in my study was involved in this practice, which they colloquially called the “dead souls” arrangement.

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International corporations also hire “dead souls”: one young woman with cerebral palsy, Katia, was “employed” at the Kyiv office of a major multinational food company. She explained: I was working (in inverted commas) there. I think you understand me. I just gave them my workbook, and that’s it. It’s the usual way … They paid me a very small amount. But a school teacher gets the same money I got there, and [she] goes to work every day. I don’t need it. It is terrible! It is the usual way of getting the disabled to work. They are just using our privileges. They could afford to hire me for real; they are paying really big taxes, just like abroad. Katia’s assessment that “they are just using our privileges” is key here. Nondisabled people who learn about the “dead souls” arrangements often respond with comments such as, “What luck. They get paid for doing nothing. What’s the problem?” But this sort of manipulation of the system—despite the active compliance of the disabled—devalues people with disabilities and their potential contributions to the workforce and to society. The message is that it is “not worth it” to hire the disabled on a par with other workers and to invest in workplace accommodations to do so. Although official statistics show a recent increase in employment of the disabled in Ukraine—during 2007, 22 percent of the disabled were registered as employed (MLSP 2008: 137)—it is not at all clear that this rise indicates a real increase in employment, or if it reflects an escalation of the “dead souls” practice (possibly due to more stringent enforcement of quotas and requisite fines). As noted in one government-sponsored report (Derzhavna Dopovid 2002: 102), the quota system places disabled jobseekers in a vulnerable position: employers, whose primary concern is competitiveness in business, are not interested in employing workers who they perceive as being “unqualified” and “inadequate.” The report concludes that “this highlights the need for raising standards of professional preparation [of the disabled] in competitive specializations” (ibid.). On one hand, this proposed solution stresses the need to provide the disabled with access to educational and vocational training opportunities and thus empower them as potential workers. On the other hand, it shifts the focus from employers’ discrimination in hiring to looking instead at potential problems of the workers—are they unqualified? Why aren’t they competitive? It proposes an individualizing solution to a problem that is much larger in scope. Other ironies are present as well. For example, although enterprises may apply for state funds to support the costs of revamping the workplace to accommodate disabled workers, overall the Ukrainian state has not made it easy for employers to hire the disabled. Employers who are serious about integrating workers with disabilities into the workforce must go through a process of getting these positions accredited (accreditation is required for each “work space” (Ukr. roboche mistse) for which a disabled worker is permanently hired), and in doing so face confusing and contradictory laws. To date there is no single, concise, organized source for information for such employers (Myronivs’kyi 2005). More work also needs to be

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done to connect employers with disabled jobseekers and to dispel negative stereotypes about disabled workers and their “limited potential” among employers. One informant, Iryna, the head of an NGO for the disabled in a small city in central Ukraine, set up a partnership with the local unemployment office when she heard that employers regularly contacted the office to seek out disabled workers. She quickly learned, however, that the vacancies offered were exclusively for janitors or “lifters” (Rus. gruzchik). She described the solution she pursued—a job fair: We had a job fair—we invited directors of firms and enterprises, and people with disabilities … We let them know that among the disabled there are many qualified people. People become disabled at different times in their lives— not necessarily in childhood. People have some educational background. They were really surprised that we have people who can do computer work. And several people were hired right on the spot at the job fair because we began a dialogue. We tried to understand one another and it worked. Iryna thus worked through her NGO to address a lack of dialogue between organs of the state (the unemployment office), those of the market (the employers) and citizens with disabilities. She also formulated a strategy to educate local employers about the potential of her members as workers and to dispel negative stereotypes of the disabled as people who could only perform manual, unqualified work such as “lifting” (problematic for many people with disabilities in any case) and janitorial work. Another phenomenon involving employment of the disabled also points up some of the discourses surrounding disability and citizenship. There is a long history of disabled work collectives in the Soviet Union, formerly called artels. Work artels were formed by the disabled—without state assistance or support—beginning in 1921, before the end of the civil war (Indolev et al. 1998). By the end of the 1950s there were 4,252 artels with 218,900 workers consolidated in the Manufacturing Cooperative of Invalids (Promkooperatsiia invalidov). By July 1960 the artels had been liquidated by the Soviet state, which appropriated all their assets (ibid.). The only organizations for the disabled to formally exist until perestroika were the All-Union Organization of the Deaf (VOG), and the AllUnion Organization of the Blind (VOS), whose programs were focused on employment of their constituents in artels. The problem of employment of the disabled was a major impetus for attempts to form organizations for the disabled outside these two state-sanctioned groups, and employment was a primary focus of the All-Russian Organization of Invalids (VOI) formed in 1988. Since then the Russian government has ceded more than 300 enterprises back to the VOI, a move seen as a reversal of the state’s unjustified appropriation of disabled artels in the 1950s. As in Russia, in Ukraine today the Ukrainian Organization of the Blind (UTOS) and the Ukrainian Organization of the Deaf (UTOG) are two of the strongest disability groups, and both focus on providing employment—through factories and

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enterprises owned by the organizations—to the deaf and blind in Ukraine. Because they have monopolies on the production of certain goods (matches, brooms, specialized work wear, and others) these organizations are sometimes popularly referred to as “mafias.” (Reportedly, “mafias” made up of disabled groups also control part of the illicit drug trade in the country.) There are also firms in Ukraine known as “disability enterprises” that provide so-called “specialized work places” for the disabled. To be officially designated as a “disability enterprise,” and to qualify for requisite tax advantages, at least 50 percent of a firm’s employees must be disabled. Some disability rights activists see the disability enterprise as an empowering tool for the disabled to secure work in a very tight job market. Additionally, many disability enterprises are administered by persons with disabilities, who are admired for their achievements in producing profits, overcoming a range of barriers, and helping other disabled people in the process. The system of disabled enterprises is also subject to abuse, however. During 2005 I interviewed a group of entrepreneurs who were planning to establish a “rehabilitation center” in Kyiv to provide a range of services to the disabled, including “vocational rehabilitation.” Although to my knowledge this center was not realized, the group’s plans are illustrative of how employment-related benefits for the disabled can be used illicitly. The center was to be attached to a factory, with at least half the workforce consisting of people with disabilities (who presumably would take part in “vocational rehabilitation”), thus qualifying as a disabled enterprise with accompanying tax benefits. Some of my interlocutors were sceptical about schemes such as these, questioning the motives of the entrepreneurs and interpreting the “rehabilitation center” as a front for what would really just be a means of securing a cheap, rather captive labor force. At the level of the state there is a detectable move in Ukraine to do away with disability enterprises. Language in a 2002 government report is quite strong: “employment of invalids in specialized enterprises should not be considered a solution for providing jobs for invalids or as a foundation for such a solution. Working in specialized enterprises, invalids are in an isolated social system. Moving from a specialized to a regular type of employment must be the goal of the state in relation to invalids” (Derzhavna Dopovid 2002: 103). The call here is for the integration of people with disabilities into the general workforce, a problem that the 2001 change to the Law on the Basis of Social Protection of Invalids (No. 2606-III)—which established quotas for all enterprises—was designed to address. Examples like the system of disabled enterprises show how, given a range of constraints, people in disabilities in Ukraine today are often unable to exercise the agency that is accorded them in the legislation that affects their lives. These processes, and the effects on possibilities for “citizenship,” are interpreted differently, depending on a range of factors such as socioeconomic status, educational background, and one’s position within a range of hierarchies. The entrepreneurs mentioned above had picked up on one of the latest trends in state and NGO-provided services for the disabled in Ukraine: the establishment of centers that provide various forms of rehabilitation. As one informant noted, “It has become fashionable to open ‘rehabilitation centers’ all over the country,” and

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many of these rehabilitation centers, which receive state support, include some kind of “vocational education” in their programs, along with physical rehabilitation. Undoubtedly, the focus on vocational rehabilitation is a strategy to address the very real problems of unemployment among the disabled outlined above. It is also a way to ease the financial burden placed on the state, which is obligated to support disabled citizens through monthly pension payments and a range of other entitlements. This focus on employment is coupled with proposed changes in disability benefits that would make it illegal for Group I invalids (those considered unable to work, and in need of care) to work and continue to receive pension benefits. As Oleg Poloziuk explained to me, “Now Group I invalids will have to choose—work or pension, but not both. It is a case of the state telling us: ‘You want too much.’” He went on to explain that the proposed changes misrecognize the difficulties faced by people with disabilities, who need special accommodations and a certain measure of state financial support to get them to a position where regular employment is a viable and desired option. Edik, a disabled athlete and entrepreneur (his story is further described below), is also cynical about the new focus on vocational rehabilitation, and sees it as a violation of the social contract. He says that by emphasizing pratsevlashtuvannia (Ukr. job placement), the state is trying to shirk its responsibilities by “requiring the disabled to earn money in order to buy their own wheelchairs.” Edik, an entrepreneur himself and a strong proponent of initiative, hard work, and selfsufficiency among the disabled who are able to work, sees the state’s recent focus on vocational rehabilitation as a case of putting the cart before the horse. In other countries, he notes, the state provides all necessary fundamental support (such as appropriate wheelchairs, personal means of transportation such as vans, appropriate medical care, and physical therapy) and those disabled who can then work are better able to rehabilitate and “realize themselves.” He believes this basic financial aspect of the problem is one that only the state can solve—NGOs cannot do it, and most disabled citizens cannot do it themselves. Given market reforms in Ukraine, the introduction of neo-liberal discourses on self-sufficiency and productivity that accompany such reforms, and the state’s plans to scale back the pension system, the implementation of strategies to get people with disabilities into the workforce should come as no surprise. These strategies, however, entail contradictions and generate a range of narratives that reveal much about how people with disabilities are positioned by structures of power in today’s Ukraine. The contradictions inherent in state policies of economic support and employment provisions for the disabled and the lived realities of the disabled population, bring into relief the politics of recognition and redistribution in post-socialist states. On the one hand, it is hoped that better vocational rehabilitation and enhanced employment opportunities through quotas will make the disabled more “visible” and lead to social integration. Additionally, disabled citizens are expected to generate their own source of income, allowing the state to shrink the welfare system. These important changes, however, are occurring along with market reforms emphasizing a “leaner and fitter economy,” one that at present has no room for workers who require special accommodations. These

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contradictory processes put persons with disabilities in a precarious position, and result in what Holston and Caldeira (1998: 280–81) call “disjunctive democracy,” because citizenship is institutionalized and enacted differently for different groups of citizens. In these reflections on how people with disabilities talk about issues of employment, the very notion of “citizenship” is a relational one, a conceptual shifter always dependent upon its referents (here the disabled, but also women, ethnic minorities etc.) and on relations of power in which these persons and their possibilities and experiences are embedded. Disability and economic empowerment Issues of economic entitlements are critical to any discussion of disability politics. As in the Soviet Union, in Ukraine today persons who have received disability status by the Medico-Social Expert Commission (MSEK) are assigned a monthly pension and are entitled to a range of entitlements. Pensions and entitlements vary according to the category (disabled veteran, disabled from birth, disabled on the job, disabled as a result of trauma, and so on), and the group assigned (I, II, or III, depending on a person’s perceived level of potential for independence).10 In 2009 the average monthly pension for an “invalid of Group I” was 740 UAH ($88). This dismal sum puts recipients in an extremely precarious position, especially those who have little material support from family or friends and those whose disability (or pervasive employment discrimination) prevents them from generating income through paid work. The current pension system is criticized by clients for a number of perceived shortcomings: pensions are based on minimum living standards, the system is highly abused with people “faking” disability draining the fund of resources for those who really need them, the pension system creates dependence among citizens who could otherwise be self-sufficient, and so on. The example of Edik, a disabled athlete and entrepreneur, highlights many of the narratives that circulate in debates assessing the extent to which the state should extend economic compensation to disabled people. Edik is well known in the “spinal’nik” community as someone who has managed to become economically prosperous since his injury in the early 1990s. He lives with his wife and teenage son in a lovely two-story home in the private sector of a major city, drives an imported car with hand controls, and runs his own small business. In response to my question, “How were you able to do it?” Edik answered that he realized soon after his injury that the state was not going to help him solve his problems. After his initial recovery from injury, during which he relied on financial and moral support from friends and family, he turned to sports. Although he did not receive adequate state support in his athletic endeavors, he did enter some international competitions and used prize money to support his family. He combined the prize money with continued financial support from friends and business profits to build a house and establish economic independence for himself and his family. In telling his life story and commenting on the contemporary disability rights movement, Edik takes up a narrative of personal initiative and innovation. He thinks

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that the majority of people in Ukraine—and the disabled especially—are too passive; the Soviet system, he says, instilled in them an attitude of dependence that has to be changed. Edik is critical of what he calls the daval’nitskyi (Ukr. “gimme”) idea that he thinks is the basis for most of the disability rights movement: “Daite invalidu i vse“ (“We disabled need this, and this, and this…”). He believes that the current harsh economic realities in Ukraine call for new, tough measures: “You have to tell some people who request disability benefits that they simply have to look out for themselves.”11 Edik is also critical of how disability categories are “ranked” in Ukraine (and in Russia), which he identifies as an outdated holdover from the Soviet military-industrial state. Edik interpreted this “hierarchy” of disability claims as a clear case of the state’s privileging of the needs of some disabled persons (veterans, for example, many of whom are very elderly) over those of others (such as children and victims of trauma, many of whom are relatively young). He used the example of state-provided automobiles to further criticize the system: both disabled veterans and trauma victims are guaranteed a heavily discounted car at the state’s expense. He finds it ludicrous that elderly veterans are first in line for these cars—most are too infirm to drive them anyway, he averred. Due to long waiting lists (one of my research participants received his car in 2005 after waiting for 17 years) those younger people with disabilities who could really benefit from the automobile may never receive a car. Faced with what he calls “the state’s mistaken priorities,” Edik formulated his own strategies for generating income to purchase a car and equip it with hand controls outside the state entitlement system. Despite his criticism of the “passivity” and “dependence” of many people with disabilities, Edik realizes that structural constraints place limits on people’s possibilities to become economically self-sufficient. In describing his success, he cites his access to support networks, particularly friends and family; his physical condition (he is stronger and more mobile after his injury than many other spinally injured persons); and his positive outlook on life. Edik sees himself as an “exception,” and asked me to treat him as such in my study. Despite his criticism of citizens’ over-dependence on the state, Edik firmly believes that economic well-being is the basis for any kind of rehabilitation of disabled people, and says that economic security has to precede any social adaptation. He believes the state should take full responsibility for economically supporting “people who truly cannot work.” Edik, who has traveled to various countries in Europe and North America for athletic competitions, cites the “civilized” approach to the disabled he saw there. He said, “The civilized approach is when states give adequate financial help to people who are unable to support (Ukr. podbaty) themselves.” He believes that lack of such support has prevented the development of a strong disability rights movement in Ukraine (“People have too many financial worries to become socially active”) and chokes off any possibility for people with disabilities to truly enjoy “equal rights.” Edik contrasts the Ukrainian reality with the situation he sees in European countries. He says that wheelchair users he knows “enjoy full citizenship rights, because they get adequate state support that allows them to live full lives like anyone else. That is lacking in Ukraine, despite declarations about ‘equal rights.’ Here the state guarantees nothing.”

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Edik’s vision of citizenship for the disabled clearly prioritizes the importance of a firm economic base around which people can then build satisfying lives. His narratives draw on questions fundamental to questions of citizenship in a changing state: the politics of recognition (debates about who is deserving, and how “needs” are defined), and the politics of redistribution (debates about the extent to which certain categories of citizens are deserving—that is, what entitlements they should be offered) (Fraser 1997). Edik also ruminates on what role the state should play in disabled citizens’ lives. Here his narrative shows how processes of globalization and transnational advocacy networks are changing how people with disabilities in Ukraine conceptualize their rights vis-à-vis the state. Drawing on the example of European and Western colleagues he has met, he wishes the Ukrainian state would intervene more, and in a more positive way, but recognizes that in the face of inadequate state support individuals must find their own solutions. His narrative draws on discourses of individual initiative in the face of a reluctant state. This vision, of course, is not totally individualizing, because achieving it requires a good deal of social support and adequate financial means, in Edik’s case provided by others initially as a form of start-up. Edik’s narrative, I argue, helps us track the changing and contingent notions of “citizenship” articulated by some people with disabilities in Ukraine. He draws on a neoliberal discourse of individualism and self-reliance, yet calls for a strong state and a robust social welfare system. This narrative reflects the complex and fluid politics of redistribution that motivates contemporary discussions of disability and citizenship.

Conclusion Through a range of informal and formal practices—both discursive and actionoriented—people with disabilities in Ukraine today are staking citizenship claims in ways that would have been impossible 20 years ago. It is difficult to do so successfully, however, without the backing of a willing state. As anthropologists have noted, post-socialist citizens tend to have fraught and contradictory relationships with the state, bemoaning the state’s absence yet actively inviting the state into their lives (Ninetto 2005). Even though most of the people I interviewed in Ukraine narrate their relationships with representatives of state institutions as antagonistic, they often expressed a desire for more state, not less. Many disability rights activists seem to want the state to be an understanding facilitator, but are skeptical that it will ever happen—they are very cynical about corrupt officials and the tumultuous political situation in Ukraine, particularly the populist approach to disability politics taken by prominent politicians. Another common view is that representatives of the state are simply uninterested in citizens’ plights, being preoccupied with lining their pockets “while they still can.” Despite these doubts, many disability rights activists find themselves “reaching out for the familiar allocative state of before” (Verdery 1996: 214) to solve the many historical and structural constraints they face, yet being urged to stop doing so, even when no viable alternatives are provided.

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In this chapter I have focused primarily on the narratives of several disability rights activists and the ways in which they formulate citizenship claims in relation to questions of economic entitlements and employment possibilities. The varying notions of “citizenship” espoused by these persons shed light on the changing politics of recognition and redistribution that characterize post-socialist transformations in social policy. These shifts result from and are productive of a range of discourses about citizens’ rights and responsibilities in the new Ukrainian state. With the eminent changes in social policy regarding disability, social services, and pensions, many persons feel compelled to stake disability claims and confront the state. As Petryna (2002: 5) has demonstrated for claimants of Chernobyl disability entitlements, “In Ukraine, where an emergent democracy is yoked to a harsh market transition, the damaged biology of a population has become the grounds for social membership and the basis for staking citizenship claims.” Through a range of political, medical, and social institutions, a whole apparatus has emerged to classify and manage “invalids,” and it is largely through this apparatus that the disabled subject is created (Foucault 1982; Tremain 2005: 5–6). This phenomenon is not unique to the Ukrainian case. What problematizes this process, however, is the reality that in Ukraine this apparatus does not work very well; it is unwieldy and entails many contradictions, shortcomings, and injustices. This fraught citizen-state relationship is encapsulated in the understanding of dobytysia, a Ukrainian word that means something akin to “squeezing things out of the state.” My informants frequently related their attempts to dobytysia not only entitlements and resources guaranteed them by law as disabled citizens, but also information about their rights and the laws and structures that govern their lives. As Barnes (1991) has pointed out, and Kjellberg (2002) and others have reiterated, lack of access to information is a serious constraint on the ability of any person to exercise one’s formal citizenship rights. Indeed, my informants in Ukraine frequently stated that “it is very convenient” for representatives of the state to keep the disabled uninformed about their rights. As Oleg Poloziuk (2005) notes, in the Ukrainian case “each family is compelled to fill the informational vacuum it faces by drawing on a range of sources: from other disabled persons and their families who have had similar experiences, doctors, representatives of NGOs, and only then from representatives of the medico-social commission, the department of labor and social policy, and social services.” Talk about dobytysia reveals the contradictory terms in which many people with disabilities (and other categories of citizens who feel they are losing out in the “transition”) conceptualize their relationship with the state, both individually and collectively. They are critical of a state that denies them full citizenship rights yet persist in appealing to institutions of the state as a guarantor of such rights. Thus, although people are tied up in the complicated state apparatus via their claims to disability, many turn to an alternative, informal system that affords access to information and social support. This alternative system runs parallel to yet also intersects with institutions of the state governing disability. Through these intersections, people in the disability system—and especially disability rights activists—become both subjects of and subject to disability discourses, not

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merely their objects (Cruikshank 1999: 23). The narratives presented above show how people with disabilities from a range a backgrounds may resist hegemonic discourses that position them in certain ways and also challenge the institutional practices that constrain their possibilities. As Barbara Cruikshank has noted in her critical study of welfare recipients in the United States, “Being ‘just another number,’ ‘dependent,’ or ‘in need of help’ is not the antithesis of being an active citizen. Rather, it is to be in a tangled field of power and knowledge that both enables and constrains the possibilities of citizenship” (1999: 20). As Bérubé (2003) notes for the United States, all too often people with disabilities are excluded from debates on issues of citizenship (in his formulation, “participatory parity”), a problem that activists in Ukraine also point out. Regrettably, all the post-Soviet political administrations (most notably that of former president Viktor Yushchenko, and most recently that of president Viktor Yanukovych) missed an opportunity to include the “veterans” of the disability rights movements in the conversation. With a few exceptions, deliberations on disability policy have been carried out without the sustained participation—or the political appointment—of persons with disabilities themselves, arguably the ultimate “experts.”12 The most highly visible and respected disabled citizens in Ukraine, members of the country’s extremely accomplished paralympic teams, have played no role whatsoever in deliberations of disability politics. In a situation where even the most known of this “unknown population” (Poloziuk 2005) are marginalized from decision-making processes, the fraught and altogether uncertain nature of “participatory parity” for the disabled in Ukraine is brought into relief.

Notes 1 An earlier version of this paper was presented at the First Annual Danyliw Research Seminar in Contemporary Ukrainian Studies at the Chair of Ukrainian Studies, University of Ottawa, September 29–October 2, 2005. I am grateful to Michael Rasell and Elena Iarskaia-Smirnova for their helpful suggestions for revision. My research on disability in Ukraine has been generously supported by the Office of the Vice President for Research at Indiana University, the International Research and Exchanges Board, and the Social Science Research Council’s Eurasia Program. 2 In step with this research focus, most respondents involved in this study are persons who have experienced traumatic spinal cord injuries (primary causes included diving accidents, falls from heights, automobile accidents, and gunshot wounds). Other participants included amputees and persons with cerebral palsy, muscular dystrophy, multiple sclerosis, spinal tumors, Bekhterev’s disease (a chronic and progressive autoimmune disease resulting in immobility of the spine), under-developed limbs, and those who had contracted childhood polio. 3 Over the last decade, such persons have come to be identified (and to self-identify) with the general category of koliasochnyki (Rus. wheelchair users) or spinal’niki (Rus. persons with spinal and spinal cord injuries or diseases). Amputees, and people with tuberculosis of the spine, spinal meningitis, hernias, spinal hemorrhaging, and rheumatoid arthritis are often also included (Indolev 2001: 11–25). 4 This inquiry is part of a larger long-term ethnographic study of disability history, disability experience, and disability rights movements in Ukraine conducted during

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6

7 8 9 10 11 12

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2002–09. The research has involved participant observation with 26 advocacy groups, personal interviews with 90 informants (including 15 life history interviews), and survey research. In Ukraine, disability status is assigned by the Medico-Social Expert Commission (MSEK), which assesses the cause and level of disability. At present, disability groupings in Ukraine are categorized as they were in the Soviet Union: persons with disabilities are categorized into three groups (I, II, or III), depending on the severity of the disability and the individual’s ability to work and care for oneself. Group I includes those considered unable to work and who are deemed to require constant nursing care. Group II includes those who have lost some capability to work but may work in special conditions; members of Group II are not perceived to require constant nursing care. People in Group III are considered the partially disabled who have lost some work capability but may engage in part-time or casual work (Madison 1989: 171–72). This lack of statistics also characterizes the Russian case. Through compiling the scant available data and carrying out elaborate guesswork, journalist and activist Lev Indolev (2001: 7–9) estimates around 10,000 persons with spinal cord injuries living in Russia, and a total of 250,000–300,000 children and adults who use wheelchairs. For a discussion of disability history in the USSR, particularly in Soviet Ukraine, see Phillips 2009. This and other legislation affecting the disabled is archived at http://naiu.org.ua/ (last accessed 29 November, 2010). The Decree may be found at http://naiu.org.ua/content/view/99/87/ (last accessed 29 November, 2010). In the Soviet Union the commission was called the Treatment-Labor Expert Commission, and the post-Soviet name change was to reflect the new state’s focus on issues of social rehabilitation over questions of the labor-readiness of the disabled. See Petryna (2002) for nuanced accounts of how the system of disability status in Ukraine was manipulated in the 1990s and early 2000s. An exception is Valery Sushkevych, long-time head of the Parliamentary Committee on Pensioners’, Veterans’, and Invalids’ Affairs, a survivor of childhood polio who is mobility disabled. Sushkevych wields a good deal of political power in disability affairs, being linked to all the high-level state and quasi-state institutions dealing with disability, a situation that has led some to refer to him as the “invalid baron.” My informants in Ukraine frequently advocated for more democratic power-sharing in the disability rights movement.

References Baranova-Mokhort, S. (2005) “I znova pro nabolile—pratsevlashtuvannia invalidiv,” Svoia Hazeta, No. 03 (019): 6. Barnes, C. (1991) Disabled People in Britain and Discrimination: A Case for AntiDiscrimination Legislation. London: Hurst and Company. Barnes, C., Mercer, G. and Shakespeare, T. (1999) Exploring Disability: A Sociological Introduction. Cambridge: Polity Press. Barton, L. (1993) “The struggle for citizenship: The case of disabled people,” Disability, Handicap, and Society, 8(3): 235–48. Beckett, A. (2005) “Reconsidering citizenship in the light of the concerns of the UK disability movement,” Citizenship Studies, 9(4): 405–21. Bérubé, M. (2003) “Citizenship and disability,” Dissent, 50(2): 52–57. Carey, A. (2003) “Beyond the medical model: a reconsideration of “feeblemindedness,” citizenship, and eugenics restrictions,” Disability and Society 18(4): 411–30.

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Cruikshank, B. (1999) The Will to Empower: Democratic Citizens and Other Subjects. Ithaca: Cornell University Press. Danermark, B. and Gellerstedt, L. (2004) “Social justice: Redistribution and recognition – a non-reductionist perspective on disability,” Disability and Society, 19(4): 339–53. Das, V. and Addlakaha, R. (2002) “Disability and domestic citizenship: voice, citizenship, and the making of the subject,” Public Culture, 13(3): 511–31. Derzhavna Dopovid (2002) Pro stanovyshche invalidiv v ykraini ta osnovy derzhavnoi polityky shchodo vyrishennia problem hromadian z osoblyvymy potrebamy. Kyiv: Sotsinform. Foucault, M. (1982) “The subject and power,” Appended to H. L. Dreyfus and P. Rabinow (eds.) Michel Foucault: Beyond Structuralism and Hermeneutics, 2nd edition. Chicago: University of Chicago Press. Frank, G. (2000) Venus on Wheels: Two Decades of Dialogue on Disability, Biography, and Being Female in America. Berkeley: University of California Press. Fraser, N. (1995) “From redistribution to recognition? Dilemmas of justice in a ‘postsocialist’ age,” New Left Review, I/212: 68–93. Fraser, N. (1997) Justice Interruptus: Critical Reflections on the “Postsocialist” Condition. New York and London: Routledge. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster, Inc. Hockenberry, J. (1995) Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. New York: Hyperion. Holston, J. and Caldeira, T. (1998) ‘Democracy, law, and violence: Disjunctions of Brazilian citizenship’ in F. Aguero and J. Stark (eds.) Fault Lines of Democracy in PostTransition Latin America. Miami: North-South Center, pp. 264–96. Indolev, L. (2001) Zhit’ v Koliaske. Moscow: Soprichasnost’. Indolev, L., Oleinikova, M. and Panov, V. (1998) Kak Eto Bylo. Moscow: Soprichasnost’. Jayasooria, D. (1999) “Disabled people: Active or passive citizens—reflections from the Malaysian experience,” Disability and Society, 14(3): 341–62. Kjellberg, A. (2002) “Being a citizen,” Disability and Society, 17(2): 187–203. Kohrman, M. (2005) Bodies of Differences: Experiences of Disability and Institutional Advocacy in the Making of Modern China. Berkeley: University of California Press. Langan, C. (2001) “Mobility disability,” Public Culture, 13(3): 459–84. Lister, R. (1990) The Exclusive Society: Citizenship and the Poor. London: Child Poverty Action Group. Madison, B. (1989) “Programs for the disabled in the USSR,” in W. McCagg and L. Siegelbaum (eds.) The Disabled in the Soviet Union: Past and Present, Theory and Practice. Pittsburgh: University of Pittsburgh Press, pp. 167–98. Makharynska, N. (2002) Social Defense of Invalids in Ukraine. Senior thesis submitted to the Department of Sociology, National Technical University of Ukraine, Kyiv Polytechnical Institute. Marshall, T. H. (1992[1950]) Citizenship and Social Class. London and Concord, MA: Pluto Press. Marunych, V., Ipatov, A., Serhieni, O. and Voitchak, T. (2004) “Poiusy ta minysi Indyvidual’nykh prohram reabilitatsii invalidiv,” Sotsial’ne Partnerstvo 1(1): 22–23. Ministry of Labor and Social Policy (MLSP) (2008) “Pro stanovyshche invalidiv v Ukrayini: Natsional’na dopovid’,” Kyiv: Ministry of Labor and Social Policy of Ukraine.

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Myronivs’kyi, V. (2005) “Iak atestuvaty roboche mistse invalida?,” Sotsial’ne Partnerstvo, 3(4): 14–16. Ninetto, A. (2005) “‘An island of socialism in a capitalist country’: Postsocialist Russian science and the culture of the state,” Ethnos, 70(4): 443–64. Pateman, C. (1989). The Disorder of Women: Democracy, Feminism and Political Theory. Stanford: Stanford University Press. Petryna, A. (2002) Life Exposed: Biological Citizens after Chernobyl. Princeton: Princeton University Press. Phillips, S. D. (2002) “Living in a parallel world: Disability in post-Soviet Ukraine,” Russian and East European Center News, University of Illinois at Urbana-Champaign, 100: 1–2. Available at http://www.reeec.illinois.edu/publications/center/documents/ news_fall02.pdf, last retrieved November 29, 2010. Phillips, S. D. (2009) “‘There are no invalids in the USSR!’ A missing Soviet chapter in the new disability history,” Disability Studies Quarterly, 29(3), available online at http:// www.dsq-sds.org/article/view/936/1111, last retrieved November 29, 2010. Phillips, S. D. (2011) Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington: Indiana University Press. Poloziuk, O. (2004) “Iurodychna konsul’tatsia: Shcho oznachae poniattia ‘invalid’ ta iaki orhany vstanovliuiut’ invalidnist’?,” Sotsial’ne Partnerstvo, 1(1): 21. Poloziuk, O. (2005) “Problems of socio-legal protection of disabled persons with spinal cord injuries in Ukraine,” Paper presented at the Sixth Congress of the International Association of Ukrainian Studies, Donetsk, Ukraine, June 29–July 1, 2005. Quicke, J. (1992) “Individualism and citizenship: Some problems and possibilities,” International Studies in Sociology of Education, 2(2): 147–64. Smith, S. (1989) The Politics of “Race” and Residence: Citizenship, Segregation, and White Supremacy in Britain. Cambridge: Polity Press. Somers, M. (1994) “Rights, relationality, and membership: rethinking the making and meaning of citizenship,” Law and Social Inquiry, 9(1): 63–112. Somers, M. (1995) “Narrating and naturalizing civil society and citizenship theory: The place of political culture and the public sphere,” Sociological Theory, 13(3): 229–74. Tremain, S. (ed.) (2005) Foucault and the Government of Disability. Ann Arbor: University of Michigan Press. Verdery, K. (1996) What Was Socialism, and What Comes Next? Princeton: Princeton University Press. Zhelezniak, Y. and Mashtaliarchuk, B. (2005) “Bezbar’ernost’: chas rishuchykh diy nastav,” Povir u sebe, 21–22(333–34), June 1–15, 2005.

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Those who do not work shall not eat! A comparative perspective on the ideology of work within Eastern European disability discourses Darja Zaviršek

Historically disability has been connected with poverty given that physical impairments and mental health issues are associated around the world with the loss of paid work, low social status and stigma. People with disabilities1 have generally been constructed as unable to work without really being given the opportunity to be involved in paid employment (Shakespeare 1998). Under state socialism people with disabilities from Central and Eastern Europe were not defined as poor, but rather as the ‘children of the state’ because they were officially protected by a wide net of large social institutions, and perspectives such as the quality of life, independent living and the life course did not count (Zaviršek 2006). Poverty in the region increased dramatically after the disintegration of state socialist economies and governments and is especially sharp in countries where social transfers are low or hardly exist and where the social dimensions of health are not taken seriously, for example in Ukraine, Russia, Romania and Georgia (UNDP Ukraine 2008; Mete 2008; Mitra et al. 2011). People with disabilities are therefore disproportionately represented among those living in extreme or chronic deprivation since poverty causes disability and conversely disability can cause poverty. It is therefore no wonder that disability activists, some experts and policy makers frequently see the right to work as the primary means of achieving greater justice and moving beyond individualistic explanations of poverty and exclusion. Yet can the solution be so simple when disability is not only connected to social and economic inequalities, but also to negative cultural beliefs, including the medicalist, pathological and patronising attitudes of caring professionals who invest their expertise and fantasies in helping ‘cripples’, ‘invalids’ and disabled people? An Indian study has shown that: disability is still overwhelmingly viewed as a social welfare issue. As a result, disabled people are seen as passive victims requiring charitable assistance and disability is considered a “special” issue, isolated from mainstream development. [...] In India, rights are claimed less in terms of equality of

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access than of the notion that certain groups are under-privileged and require “special” assistance. (Thomas 2005a: 9) This situation is also characteristic of Eastern Europe. People with disabilities are excluded from ordinary life by their disability label in order to be ‘re-included’ through welfare provisions that encompass not only paid workplaces, but also quasi-employment and occupational activities (Zaviršek 2002, 2006, 2010). Most forms of work and societal participation for people with disabilities are exclusionary and based on negative images and stereotypes of ‘not-entirely-normal’ subjects. The continuous production of the ‘Other’ is packed into the discourse of ‘being different’ (Turner and Stagg 2006; ethnographic fieldnotes 2000–12). Actual figures about the poverty of people with disabilities and their families depend on many different factors such as the type of disability, social transfers, the symbolic representation of disability in a given society and whether poverty is defined solely in material terms or also in terms of quality of life, choices and life satisfaction. For example, the relationship between poverty and disability in Uzbekistan changes depending on the threshold for what constitutes a disability (Scott and Mete 2008). When minor and moderate disabilities (either physical or intellectual) are included there is no significant relationship between poverty and disability, however, there is a strong positive correlation when a higher threshold is used so that only significant disabilities are counted. Another study from the postsocialist region shows that the employment rates of people with disabilities and the employment rate of non-disabled individuals are not correlated (Mete 2008). In Moldova, for instance, adult persons with disabilities are 60 per cent less likely to work in paid employment than those who have no impairments (ibid.: xiv). This chapter offers a critique of the ideology of work as it relates to Eastern European people with disabilities in the era defined by Jeremy Rifkin (1995) as the ‘end-of-work’ period where some types of work are disappearing due to globalisation and some are replaced by high technology. It will demonstrate that exclusionary practices and segregation in workplaces prevail in relation to people with disabilities despite new laws and regulations in the countries of Eastern Europe which have joined the European Union in recent years. The ideology of ‘workfare’ has contributed to the creation of more short-term welfare jobs and the growing number of placements in sheltered workplaces without a work contract. However, there has been no fundamental shift in societal beliefs about the ‘normal’ and the ‘abnormal’ in the region and indeed most parts of the world.

The meaning of work: history, ideology and policy Historically, the employment, economic and profit-oriented activities of people with disabilities have been viewed with suspicion in society and politics. It was not actual ability, but stigma and prejudices, which excluded and kept disabled people from paid employment, creative work and innovation.2 These hostile ideas were often connected to beliefs about the ‘morality’ of work.

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Early Christian ideas saw work as both a consequence of original sin (the Fall) and as a joy and moral responsibility (Granter 2009). The idea of a moral obligation to work – something that was not widespread prior to the early European industrialisation of the eighteenth century – viewed work as a charitable activity for the needy and as something to occupy the mind, which might otherwise be distracted by improper thoughts. The tendency to regard paid employment as a moral obligation was greatly influenced by Protestant ethics, but gained force throughout Europe in the nineteenth century. In the region of Slovenia, for instance, the well known priest and educator Anton Slomšek (1800–62) wrote in his 1857 book Blaže and Nežica in the Sunday School that Saint Paul commanded “Those who do not work shall not eat!” (2006: 49). This slogan not only became a part of the moral and religious education for young people who visited Sunday schools in Slovenia, but also a widely used Slovenian proverb throughout the nineteenth and twentieth centuries. The religious belief that work is an obligation to God was transformed into the capitalist work ethic of the nineteenth and twentieth centuries. In the industrialised secularising states, the obligation to work spread through all social professions, affecting the social construction of healthy bodies and the design of asylums and residential institutions (Foucault 1988; Garland Thomson 1996; Davis 1997). In Europe and the USA, people who were poor or homeless were seen as dishonest, responsible for their own miserable situation, lazy and consequently worthy of punishment. Some people with disabilities tried to reject the stigma of the ‘undeserving poor’ by carrying signs that read ‘I was born a cripple’ to avoid being forcibly removed from public spaces (Gleeson 1999). From a historical perspective, the majority of people with disabilities had always worked. However, medical classification and spatial segregation meant that their economic activity lost some of the fundamental characteristics normatively associated with work: a reward in the form of a salary, public recognition, increased choices and liberation in the form of self-determination. Work was used as a means of improving and re-socialising disabled people and keeping them under control. While emerging economic elites used the work ethic to discipline and educate workers in order to achieve modern production relations and profit, labour in workhouses and asylums was used as a supposedly therapeutic tool to control disabled people. Work was a way of measuring time and breaking institutional tedium into sequences of monotonous activities. People who were seen as unable to work or who refused to work were perceived as irrational and were forced to work not for money, but as a part of a medical therapeutic cure. Asylums proclaimed that they were protecting people from their own irrationality and consequently from criminality. Occupational and work therapies in these spatially segregated places became part of scientifically justified practices of healing, care and control (Mitchell and Snyder 1998; Albrecht et al. 2001). While in religious conceptualisations work was seen as a tool for occupying minds that might otherwise drift towards immoral ideas, in secular thought the very same morality of work underpinned professional interventions such as occupational therapy and re-socialisation. This was in line with the judgement that

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disabled people and their families were morally responsible for their impairment. While the work of people with disabilities was not seen as potentially profitable, it was benevolently defined as an activity of moral improvement and medical therapy (Stiker 2000). Ethnographic accounts from the former Soviet Union convey life stories of economically independent disability activists who were criminalised and prevented from continuing their economic activities in the late 1970s. In 1978, Yuri Kiselev built a barrier-free house to serve his needs as an impaired person. The house was burned down by an unknown person and he was arrested when he wanted to repair it (Dunn and Dunn 1989). Another disability activist, Genadii Guskov, was punished and sent to a nursing home once he successfully invented special vehicles and prosthetic devices for people with physical impairments. He established a small social enterprise (a cooperative), employed other people with physical impairments and became financially independent and even prosperous. Guskov was accused of being socially dangerous by local social services. His alleged dissidence was closely related to his ability to live an economically successful life independent of public care institutions. His activities did not conform to the morally charged stereotype of disabled people as needy, economically incapable and less intelligent than the nondisabled population. Guskov’s ‘non-conformity’ led the Ministry for Social Protection to send him to a nursing home located 700 miles away from his home. Even though he was only able to move around with the use of crutches, Guskov was incarcerated with the help of armed policemen (Raymond 1989). Being disabled and economically successful was seen as subversive because disabled people were defined as dependent recipients of care and associated with a moral image of personal tragedy (Field 1989). These examples highlight that just two or three decades ago, the employment and economic activities of people with disabilities in Eastern Europe were watched with suspicion and disabled people were punished if they were economically independent. The official image of a disabled person was incompatible with the idea of profitable and productive work. For the past 300 years, then, people with disabilities have been caught in a vicious circle: as work became a societal imperative of normality, they were deprived of the ability to conform to this norm, consequently becoming morally suspect and outcasts. The normativity of paid work causes social exclusion, especially in countries with a pronounced work ethic, such as developed Western countries and some Asian countries (Engel 1985; Foucault 1988). This historical background is helpful in understanding why the right of work that was denied to people with disabilities in the past has become so vitally important in the struggle of disability activists across the world, as exemplified in the UN Convention on the Rights of Persons with Disabilities (2008) that many Central and Eastern European countries have signed and even ratified. The right to work has also guided national campaigns around the Decade of Persons with Disabilities in the USA, Europe, Asia and Africa in the past 20 years. The fight for the right to work and paid employment in ordinary environments has therefore become one of the crucial goals and principles of the ethics of disability as defined by disabled people themselves from their own lived experiences.

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Striving for employment Despite the fact that employment is one of the most socially accepted rights for adult citizens, there is a jarring discrepancy in the world: in some countries, people with disabilities can work and earn money, while in others there are hardly any jobs available to them. In Sri Lanka, approximately 8 per cent of the population are classified as disabled and about 90 per cent of them are unemployed and dependent on their families (Yeo and Moore 2003: 579). Estimates for Georgia, Kosovo, Rwanda and some Asian counties suggest that less than 1 per cent of people with disabilities are employed. In Ukraine, the employment rate among people with disabilities increased from 14.5 per cent in 2002 to 22 per cent in 2007 (Phillips 2011: 30). Some studies show that people with disabilities are excluded from micro-credit programmes because they lack assets such as collateral and are seen as a bad risk, for example in Rwanda (Thomas 2005b). Disabled people are often not told about development activities in their communities in the first place and are deliberately excluded when they try to get involved. Simultaneously, principles of redistributive justice and mainstream employment have become an important part of social policies in European Union countries. Mainstreaming the right of work among people with disabilities has undoubtedly produced a number of positive outcomes by increasing the visibility of persons with disabilities and diminishing their spatial segregation, including: • • • • •

more people with disabilities working in ordinary environments; more people with disabilities working in mixed groups without medical compartmentalisation; overcoming social isolation and developing social networks; a decline in stigma as people with disabilities become part of the social capital of societies; paid work becoming an important stabiliser for people with mental health concerns.

In 2008 the National Board of Persons with Disabilities in the Czech Republic conducted a survey on the employment of people with disabilities in the public sector. The survey found that most ministries, regional authorities and municipalities fulfilled their legal duties to employ persons with disabilities directly or indirectly and that the public employment of this group is constantly increasing (Šiška 2009).3 At the same time, it is worth noting that in the Czech Republic as well as in Slovenia, public enterprises try to find ways of meeting employment quotas4 other than through the actual employment of people with disabilities. Slovenian firms sometimes award work contracts to so-called ‘invalid companies’ (invalidska podjetja), which are enterprises where at least 40 per cent of all employed are people with disabilities. These segregated workplaces are subsidised by the government in the form of a tax reduction. Similarly, companies in the Czech Republic can purchase goods from sheltered workshops in order to

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meet their legal quotas on disabled employees (Šiška 2009; Zaviršek 2010). In Slovakia employers, while seeking to fulfil the quota system and employing people with disabilities, prefer to hire people with less severe degrees of disability, which excludes people with multiple disabilities and especially those with intellectual disabilities and mental health problems from paid employment (Hanzelova et al. 2009). In Lithuania, EU-supported programmes have provided opportunities for inclusive market-based initiatives like social enterprises, regional business development centres for disabled people and centres for professional rehabilitation. However, semi-closed initiatives prevail and people with mental health problems still have the lowest chances of gaining employment (Ruškus 2009). These examples show that mainstreaming work does have some positive effects for a minority of people with disabilities, but this does not mean that employment contributes towards wider equality in different areas of life. Global comparisons show that people with disabilities in some countries have been encouraged to assume more promising types of jobs such as in social enterprises, credit unions, cooperatives, employee-owned businesses, development trusts and social firms. In Hong Kong, more than 50 WISEs (workintegration social enterprises) have been established since 2001. They all have the ‘dual aim of providing social improvement and generating economic profit to help to move people from welfare dependency to self-reliance by giving them the capacity for independent wage-earning’ (Po-ying Ho and Kam-tong 2010). Poland is known for its cooperative movement with a long tradition dating from the end of the Second World War, although partially destroyed during the communist period, which provides employment for people with disabilities. In 2004 new social cooperatives were introduced into the Polish legal system5 and defined more fully in 2006 with the Act on Social Cooperatives. Stimulated by non-governmental organisations with the support of the Ministry of Labour, the cooperatives are part of government policies to create jobs and limit social exclusion for people defined as disadvantaged, including those with disabilities. The aim of social cooperative activity is to run a common enterprise that supports the occupational and social integration of its members. In 2008 there were 187 social cooperatives across the country, most of them involved in the service sector (repair and building services, catering and care services) and 12 per cent involved in production, for example fruit and vegetable processing as well as the production of candles and garden decorations (Wapiennik 2009). The new enterprises promise that people can increase individual independence and responsibility, but questions of whether employment really reduces stigma and to what extent it challenges the dominant meritocracy myth,6 transgenerational privileges and the ideology of the ‘able’ body remain unanswered. Seemingly promising statistics do not reveal that the majority of people with disabilities occupy less socially valued and lower-paying jobs in developing as well as in the developed countries. The Integrated Service Solution (ISS) in several Western European countries provides mostly cleaning jobs for people

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with disabilities: cleaning train stations and airports, industrial cleaning, window and office cleaning, cleaning of cooling and heating systems. In France, for instance, 45 per cent of all jobs for people with disabilities are in cleaning, landscaping, waste removal and pest control (personal visit, project Equal, Paris, 17 May 2006). These jobs require very few qualifications and employees do not even need to be able to read and write. In Hungary, where much has been done to encourage people with intellectual disabilities to enter some employment activities, persons living with Down’s syndrome are largely employed in service industry jobs as cleaners and in the handicraft industry. Among 80,000 people with disabilities, more than half were employed in the processing industry where hard repetitive work is common (Könczei and Horváth 2009). In Slovenia too, the majority of people with impairments who work in ordinary environments are employed in processing industries. Yet, discourses about the right of people with disabilities to work fail to question the limited types of jobs and semi-jobs available. The realities of low-paying and repetitive jobs, symbolic payment in so-called ‘welfare jobs’ and sheltered workplaces (without work contracts) are accepted as a given that does not need to be questioned. Additionally, several studies highlight that people with disabilities who work for pay are highly represented among the working poor, a term that highlights the relationship between a worker’s income and their everyday material needs as well as the number of household members who depend on their salary. Employment does not always protect persons with impairments from deprivation, for instance in Romania where monthly wages are very low (Mete 2008). These precarious conditions are glossed over by an ideology that views work as a sufficient condition for the inclusion of people with disabilities. As an example from outside Eastern Europe, the Japanese Organisation for the Employment of Older and Disabled People claims that, ‘We are aiming to create a “society for all” in which everyone has a chance to contribute through work’ (JEED 2008). Work has become the major contribution that a person can make to a given society and thus an end in itself. In Slovenia, one can read media coverage such as ‘From work towards social integration’ (Finc 2010), which reproduces the same discourse of work as a major factor of ‘societal inclusion’. In Portugal, too, employment is seen as the major vehicle of social integration, and as claimed by Pinto, people with disabilities (including those who are unemployed, but in training programmes) become a ‘reserve army’ of labour to serve the needs of the capital (2010: 127). Despite the fact that paid work provides some payment and an ordinary lifestyle, the undesirable nature of these jobs shows that not only unemployment, but also work itself, may cause social exclusion and create social outcasts. People with disabilities are excluded from socially respected statuses by being included in paid employment. These types of jobs and the social positioning they imply can be symbolically compared to those of the Untouchables in India or the Burakhumin in Japan, who are constructed as the holders of polluted identities and stigmatised as a group because of their socially undesirable jobs which contaminate their identity in the eyes of the others (Nakamura 2006).

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‘Welfare employment’ as the revival of medical perspectives on disability The Eastern European countries that entered the European Union in 20047 and 20078 have adopted laws on employment that formally ensure equal access to the labour market for people with disabilities and introduced new types of welfare employment. Welfare employment is defined here as a short-term work placement primarily financed by the state in order to offer short-term rehabilitation and assess a person’s work abilities.9 Although some data show that the quota system has a positive effect and some disabled people have found paid employment, no empirical research confirms that workfare discourses and programmes have really improved their quality of life, diminished stigma and promoted independent living. This is because the new laws on employment and vocational rehabilitation – which were designed to bring more people into ordinary employment through supported and protected workplaces – did not increase jobs in mainstream settings. The opposite in fact occurred whereby the employment laws legitimated a medical view of disability and increased ‘welfare jobs’ and rehabilitation activities with an army of rehabilitation, social and medical professionals who assess, monitor and categorise disabled people’s work performances whilst making the empty promise that this is done for their ‘own good’ and will eventually bring them into paid employment. In most Eastern European countries, welfare provision for persons with disabilities includes an interdisciplinary, but largely medically-oriented, review of ‘remaining ability to work’ in order to produce a rehabilitation plan for future employment success.10 The harmonious similarity of these laws in all of these countries which are now part of the EU suggests the legacy and a specific continuity from the state socialist period. Vocational rehabilitation dominates debates about disability policy and employment is framed within medical and needs-oriented laws, which expect a number of professionals to evaluate the person with a disability during different stages of largely temporary employment. Across the Eastern European region, employment programmes for people with disabilities are problematic if evaluated according to principles of social justice and genuinely improving life chances. In Slovenia, the Employment and Vocational Rehabilitation Act from 2004 introduced a quota system for workplaces, vocational rehabilitation, employment companies and protected and supported workplaces. Yet, these types of employment did not necessarily bring about greater inclusion or challenge negative images of people with disabilities. A large number of persons with disabilities work in segregated workplaces, for example disability companies, employment centres, centres for vocational rehabilitation and targeted social inclusion programmes. Protected and accommodated workplaces hardly exist in the laws mentioned above. Slovenian disability companies employ nearly one-fifth of all persons with disabilities, but more than half of their employees are non-disabled even though the enterprises still receive considerable state support – a legacy of state socialism (Zaviršek 2010). As in many other countries, Slovenian employers are keener to employ disabled staff if there

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Table 9.1 Slovenian figures on employment and people with disabilities

Total registered unemployed (%) Number of persons with disabilities in paid employment Registered unemployed persons with disabilities Number of disability companies Number of persons with disabilities in disability companies Number of employment centres Number of vocational rehabilitation services

2008

2009

2010

6.7 33,901

9.1 34,000

10.6 —

11,025

12,537

14,038

167 6,400

166 5,708

165 —

27 13

27 13

27 13

Sources: Institute of Macroeconomic Analysis and Development (UMAR) (2011), Pregled gospodarskih kazalcev ob koncu leta 2010; Slovenian Unemployment Service Monthly Statistics; Action Programme for Invalids Report, 2008 [Akcijski program za invalide, 2008].

are added incentives, for example state subsidies for salaries or tax reductions. Table 9.1 shows the growing unemployment rate against the largely stable number of disability companies and welfare jobs companies in Slovenia. The precariously low salaries and the limited amount of time that people with disabilities are allowed to work in short-term welfare jobs (from 6 to 12 months) are worrying. Disabled workers involved in Slovenian social inclusion programmes receive 62 Euros per month for a 40-hour working week. This amount is given to disabled people who are categorised as having 30 per cent of the working abilities of a ‘healthy’ person. Even a person without disabilities employed in the social inclusion programme would only get 200 Euros per month. The resulting economic vulnerability instead of autonomy only becomes obvious when the sum is compared with the monthly minimum wage, which was 562 Euros in 2010, and the poverty line of 593 Euros per month. State-subsidised workplaces for persons with disabilities paradoxically represent a new form of the welfare system’s privatisation in Eastern Europe. Of the 27 employment centres that employ 249 disabled people throughout Slovenia, the majority of them are licensed private organisations. Like disability companies during state socialism, these centres provide semi-segregated jobs, low wages and limited employment hours. Similarly, among 13 organisations providing vocational rehabilitation services only one is a public institution, while the remaining 12 are licensed private organisations. While they offer poorly paid short-term jobs for persons with impairments, they have created new long-term stable jobs for [non-disabled] professionals such as social workers, occupational therapists and education specialists. These welfare professionals are employed to assess and monitor persons with disabilities during their vocational rehabilitation even though the latter have little or no chance of entering ordinary long-term employment. Overall, the implementation of Slovenia’s new law on employment expanded the number of welfare jobs instead of ordinary workplaces. Even the fulfilment of

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quotas monitored by the Fund for the Encouragement of Disabled People’s Employment reflects a paternalistic approach towards people with disabilities. At the end of 2008, there was a 9 per cent increase in the employment of disabled people compared to 2006 when the quota system was introduced. Nevertheless, in the same year of 2008, more than 50 per cent of all Slovenian companies to which the quota applies (those with more than 20 workers) opted to pay a fine for not meeting the quota instead of actually employing people with disabilities. As in Poland, employers in Slovenia have the option of entering into business contracts with disabled companies or employment centres to fulfil quotas instead of employing workers with disabilities in their companies. In 2009 around one-third of the nearly 3,000 employers who fulfilled the quota opted to do so by entering into a business contract with a disabled company or employment centre. Nevertheless, prior to the onset of the economic crisis in 2008, the quota system had increased the employment of people with disabilities, albeit often in unsatisfactory or segregated posts (Zaviršek and Gorenc 2009). Sheltered workplaces have become a new area for the privatisation of welfare services and since 2007 the number of people participating in such schemes in Slovenia has increased as much as five-fold (Table 9.2). In the sheltered workplaces, people who are labelled by law11 as ‘incapable for independent life and work’ perform different tasks for local businesses or the public, thereby earning a small amount of money called an award. In 2010, 35 such institutions (23 public and 12 private) operated in 106 locations around the country and included more than 3,000 persons with disabilities.12 Although they share some characteristics with ordinary low-paying workplaces (e.g. working hours and repetitive work), sheltered workplaces do not confer the status of employee and, in most cases, work there does not generate anything more than a token payment. At best, these arrangements can be called ‘semi-welfare’ jobs because they also serve as a sort of day care placement and some professionals informally refer to them as ‘adult kindergartens’ (Zaviršek 2009). In January 2012, a scandal erupted after one parent informed the media that their adult children received just five Euros as a monthly award (Medvešcˇek 2012). After this incident, several parents complained that their children receive between one and seven Euros per month and are exposed to physical and emotional punishment. One of the mothers disclosed: ‘A member of staff told me that our Table 9.2 People working in sheltered workplaces in Slovenia Year

Number of persons working in sheltered workplaces

2007 2008 2009 2010

587 2,621 3,016 3,077

Source: Public welfare institutions in Slovenia 2010, available at www.stat.si (accessed 4 February 2012).

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children work in order to economically support the personnel who perform surveillance over them!’ (ibid.). People working in sheltered workshops live either with parents/relatives or in institutions for people with intellectual disabilities, which sometimes have group homes attached to them. For those who live in institutions, work in the sheltered workshops is mostly an obligatory daytime activity during which they are expected to improve their work and social skills – an inconsistent aim because the sheltered workshops only provide repetitive mechanical tasks (binding paper or cloth, connecting two different parts of an object such as making pens or small boxes) without any focus on meaningful social and learning activities. Paradoxically, people who work in the sheltered workplaces are legally denied the ability to work in mainstream settings (and thus have a semblance of independent living) due to the legal equation of disability with an ‘inability to work’. They may even be assigned work tasks for which they have officially been defined as ‘incapable’ of performing – for example washing sheets and tablecloths for local old people’s homes, woodwork, craft work and making souvenirs – and for which they receive no salaries. They are sometimes even required to work in sheltered workplaces if they want to receive welfare benefits such as accommodation in a public care institution or group home. Being transported from a group home (to which the residents themselves often do not even have a key) to sheltered workplaces and back is a typical experience of such welfare programmes across Eastern Europe and worldwide. In the case of people with intellectual disabilities or mental health problems, stigma and prejudice keep them in state welfare institutions. According to a recent study from Slovenia, up to 25 per cent of all persons in sheltered workplaces have the knowledge and skills to work in ordinary employment (Social Welfare Institute of the Republic of Slovenia 2008). Nevertheless, for some people sheltered workplaces are the only contact they have with the outside world apart from their immediate family. This state of affairs suggests that despite liberal laws on employment the dominance of the medical model still links welfare provision for persons with disabilities with the monetary benefits awarded on the basis of ‘invalidity’ which people would lose if they entered mainstream employment (Zaviršek 2002). Research from Poland demonstrates that 90 per cent of people with disabilities are not interested in gaining employment since they fear losing their disability pension and official disability status if they find a proper job and demonstrate their ability to stay in paid employment (Wapiennik 2009). The same is true in Slovenia where the outdated Social Care Act (1983) from the state socialist period defines persons with disabilities as being totally incapable of independent work and life and thus in need of financial support. Losing this money at the same time as attempting to be independent by working in paid employment is an enormous risk as the person in question will lose all social benefits. This is one of the major reasons why parents, who are most often the legal guardians of people defined under this law, prevent their children from competing in the labour market. Sheltered workplaces differ from one country to another. In Poland approximately 40 per cent of all employed people with disabilities work in sheltered

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enterprises, which are based on contracts between the government and employers who fulfil certain obligations and criteria in return for receiving tax exemptions and subsidies as well as support for the salaries of disabled employees.13 An employer can apply for the status of a sheltered enterprise if the company employs at least 25 people. In every enterprise 30 to 40 per cent of employees have to be people with disabilities, depending on their degree of disability, which again represents a medical approach of sorting people according to their level of ‘invalidity’. In 2008 there were approximately 2,150 sheltered enterprises in Poland employing up to 200,000 people with disabilities. Most were private enterprises and just a few were cooperatives (Wapiennik 2009). The current provision of welfare jobs for people with disabilities is therefore imbued with a workfare ideology – the idea that welfare recipients have to meet certain requirements to continue to receive welfare benefits. Sheltered workshops have a tripartite nature, representing a medically-oriented form of care provision for ‘disabled children’, a type of workfare and an organised workplace for those who are – paradoxically – seen as incapable of work. It is obvious that an ideology that glorifies work as the major factor of social inclusion needs to be challenged because workfare and welfare jobs neither protect disabled people from poverty nor ensure inclusion, but preserve the hegemonic division between the ‘normal’ and ‘abnormal’. In such schemes even successful employment may be treated as strange and unexpected, as shown by attitudes that ‘one of our staff performed so well that we promoted him to a position that is traditionally filled by a “normal” person’ (administrator of a welfare organisation, cited in Po-ying Ho and Kam-tong 2010: 41). In this case, the stigmatising attitudes of staff undermine the repositioning of the disabled person in the world of the ‘normal’.

Overlooked discrepancies The focus of political discussion on the right of people with disabilities to work inevitably overlooks practices that perpetuate traditional inequalities and power imbalances. Mainstreaming work has become more important than other human rights issues given the fact that so many people with disabilities still live in large institutions where they are prevented from making self-determined choices, are infantilised through media coverage and unable to obtain high-quality education. Many of them are entitled to work in institutions, but not to live a dignified life in ordinary environments. One of the leading disability activists from Bulgaria has commented: ‘They make us talk about employment to prevent us talking about more important things!’ (personal communication, ENIL conference, Ljubljana 2010). A 2007 study on the EU member states and Turkey found out that at least 1.2 million children and adults with disabilities are registered as living in longterm residential institutions, but that the number would be much higher if all countries kept accurate data on this type of welfare incarceration (European Commission 2009: 10). Institutionalisation is not declining, but affects new

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generations of children. It is estimated that across the EU at least 150,000 children live in residential care settings, including special schools, infants’ homes, homes for mentally and physically disabled people, homes for children with behavioural problems, institutions for young offenders and homes for care leavers (ibid.). In Slovenia alone in 2009, 21,730 persons lived in different long-term closed and semi-closed institutions, boarding schools and old people’s homes and in 2010 the number increased 3 per cent up to 22,254 persons.14 A large proportion of the disabled people living in institutions have intellectual disabilities or diagnoses of multiple impairments. Media representations in the region portray the happy faces of disabled children in residential settings. One recent article in Slovenia was titled ‘Happy to work’ (Petek 2010) and reported on young people from a sheltered workplace who make candlesticks and souvenirs for paltry rewards (20–100 Euros per month). A recent study from Romania showed that the media still portrays people with disabilities at polar extremes where some are helpless and inferior victims whilst others are heroes with superior qualities (Ciot and Michailidis 2008). Societal perceptions and awareness of disability continue to be dominated by medical and charitable models of mercy and support that diminish citizenship rights. Such messages do not support the inclusive employment of disabled people. One reason for the poorly paid jobs endured by persons with disabilities is the lack of educational opportunities and prejudices that have shoved them into spatially segregated environments. Current data show that children with disabilities living in Eastern Europe are significantly less likely than non-disabled children to enrol in schools (Mete 2008). They are often prevented by law from entering mainstream education and completing more than the obligatory minimum of primary education. Social workers and teachers in ‘special’ education institutions focus on disabled children’s ‘defects’ or ‘impairments’ rather than their strengths and potential to succeed in school and continue education. Educational disadvantages have different forms, ranging from total exclusion from the school system to segregated classes undermined by low expectations, motivation and support for people with disabilities.15 A lack of education (or the assumption that people with disabilities are uneducable) is a major reason why only 2.93 per cent of the total number of disabled people have paid employment in Romania (Ghergut and Gavrilovici 2009). In Slovenia, any person with a categorisation of intellectual disability (mild, moderate, severe or profound) is deprived of the right to study in an ordinary primary school. They will be taught in special schools, special classes within ordinary schools or large residential institutions (Zaviršek and Gorenc 2010). In Bulgaria almost half of disabled people do not have any professional training or qualifications at all. Among those who are registered as unemployed, 45.6 per cent have only completed basic education and just 8.7 per cent have a university degree (Panayotova 2009). Focusing specifically on people with intellectual disabilities, they have no access to proper education and training, which results in a near-100 per cent unemployment rate in Bulgaria and Slovenia (Panayotova 2009; Zaviršek and Gorenc 2010). The situation is very similar in Hungary: poor educational opportunities for persons with

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disabilities mean that only 9 per cent are in paid employment and most are employed through ‘special’ or ‘sheltered’ arrangements of the type criticised earlier in this chapter (Könczei and Horváth 2009). Narratives of young persons with disabilities who finished social work education show that the higher the educational level attained by a person with disability, the greater the struggle to find work at a corresponding skill and qualification level (ethnographic fieldnotes 2008–12).

Disability ethics and the imperative of work Although the right of disabled people to work is one of the most important values within disability and rights discourse, the desirability of an ideology that glorifies work as the major facilitator of social inclusion has to be questioned. Workfare and welfare jobs do not automatically protect people from poverty or ensure inclusion. The vocational rehabilitation favoured by traditional disability organisations and policy makers who prioritise protection over human rights needs to be critically analysed from the viewpoint of the actual changes made by these state interventions in people’s lives. Many people with disabilities have been included in paid employment, but thereby isolated from society and excluded from socially valued statuses. Even more people have experienced vocational rehabilitation, but have never had proper work in the full and positive sense of this term. Discourses of workfare fail to address these issues and do not contribute towards the right of disabled people to live a dignified life as well as their rights around housing and material well-being. More broadly, welfare jobs do not instantiate the right of disabled people to be respected as part of human diversity. This idea comes close to what Scully (2008) calls ‘disability ethics’. In her view disability ethics looks at how the ‘embodied effect of impairment’ affects the everyday life of disabled people and how people with disabilities see the world. From this perspective, employment would need to have three characteristics. Firstly, it needs to be defined as an activity that is carried out for remuneration. This constitutes an indictment of all sheltered workplaces and other semi-work contracts where workers do not receive a monthly salary or where salaries are below the poverty line or minimum wage. Next, work needs to have a creative component instead of being just repetitive labour. The distinction between labour and work can be traced back to ancient Greece and the ideas of some modern philosophers (Hannah Arendt, for example), where only work humanises and enriches the subject (Granter 2009). Thirdly, people with disabilities should be actively supported and welcomed should they wish to obtain respected and intellectually demanding jobs in line with their skills, qualifications and level of education. It is a paradox that work today is seen as the major criterion for including disabled people in society when between 9 and 20 per cent of the population in EU countries – and as much as 70 per cent in other countries and communities, such as the Roma and Shinti in Kosovo – are unemployed. Can full employment

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ever be achieved if today we face the export of jobs, mass unemployment and the mass phenomena of the working poor and the creation of precarious jobs? Such developments have prompted international discussions about the ‘end of work’ (Rifkin 1995) based on the idea that highly developed technology is eliminating the need for many traditional types of work. People with disabilities are most often employed in these slowly disappearing types of industrial workforce labour. Zygmunt Bauman has shown that we live in a global society that praises: full employment as not just a desirable and attainable social condition but also its own ultimate destination; a society which therefore casts employment as a key – the key – to the resolution of the issues of, simultaneously, socially acceptable personal identity, secure social position, individual and collective survival, social order and systemic reproduction. (Bauman 2004: 11) The obsession with full employment has also spread into the disability arena such that disabled people are being steered towards welfare employment in greater numbers than ever before. Despite employment mainstreaming and the success achieved in this area in mostly Western countries, people with disabilities are still more likely to face poverty than non-disabled people. In countries where a work ethic is strongly imbedded in the dominant value system, stigma is attached not only to poverty, but also to the question of whether someone is employed or not. The framing of a person’s contribution and work through a nineteenth-century Western conception of work (or similar ethical concepts – Confucianism, for example) has been challenged by Basic Income Earth Network (BIEN) activists and academics from around the world who believe that a basic universal income could increase the meaningful participation of every person instead of non-rewarding types of work and stigmatising welfare cash transfers (van Parijs 1992). There is therefore a need for disability policy and professionals to adopt four layers of commitment, advocacy and change in relation to disabled people’s employment. Firstly, there is a need for economic redistribution to ensure that people with disabilities can obtain paid employment and gain ‘a good life’ from it. Secondly, societal recognition in addition to economic redistribution is important to ensure that people with disabilities are seen as equal human beings in line with humankind’s variety of embodiments and human specificities. Thirdly, there is a need to transform narrow concepts of productive work that currently divide human bodies into what Bauman (2004) calls ‘producers’ and ‘waste’. Instead, a wider definition of work as the means for a holistically ‘good life’ that enhances and supports everyday well-being is part of disability ethics and concepts of social justice. Finally, the upshot of these principles is that funds should be redirected from vocational rehabilitation programmes into real jobs and schemes for monitoring the quality and effectiveness of employment.

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Conclusion There is no doubt that paid employment can be effective at tackling poverty among people with disabilities. Achieving the right to work has been one of the largest achievements of the disability people’s movement across the world. At the same time, this chapter has argued that neoliberalism dominates contemporary disability discourse and that notions of ‘dependency’ and ‘care’ have been partially replaced by the ideology of work, where every adult person is made into an income earner. Given that hegemonic workfare discourses claim that jobs for persons with disabilities contribute to independent wage earning and an enhanced self-image, research must interrogate the well-being and satisfaction of people with disabilities with their employment. How much does work really affect people’s lives? How much do people with disabilities earn, how are the earnings spent, how many friends did they make, how confident have they become and how many have really moved from welfare to general employment? Posing these questions will help to breach the symbolic and actual divisions between the ‘normal’ and ‘abnormal’ and bring us closer to understanding that there are different ways of experiencing the world in line with different embodiments and social positioning. The mystification of work – the promise of economic security and a good life for those who produce – versus the reality of low-paid, repetitive, unsatisfying and sometimes unpaid work needs to be addressed by researchers and welfare professionals. Today’s policies and schemes for mainstreaming employment in Eastern European countries are too often just another way of drawing a line between the normal and abnormal since their entire discourses are based on the idea that people with disabilities should be steered into welfare employment rather than broader goals of self-determination and independent living. There is little interest in whether these types of work and ‘rehabilitation’ really improve the everyday lives of individuals. Instead of looking at different types of discrimination, many professionals working with persons with impairments propagate an ideology of work rather than challenging the medical and rehabilitation model of disability. The latter may provide job opportunities, but it relies in practice on semi-segregated and precarious workplaces and occupational activities, thus turning discussion away from human rights and respect for diversity.

Notes 1 The expression ‘people with disabilities’ is based upon the People First Language (PFL) principles defined by people with impairments themselves. They stress that disability is a descriptor for a medical diagnosis and should be placed after the ‘person’. In the PFL formulation, ‘person’ always comes before disability. 2 For evidence of this tendency one need only look at the revolutionary work of Louis Braille (1809–52), who developed a tactile system of writing for people with visual impairments in France. Prior to the formal recognition of the Braille system, disabled children and adults who advocated for, or even used it, were punished and ostracised. It took 20 years for the French authorities to officially recognise Braille’s system

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3 4 5 6

7 8 9 10

11 12 13 14 15

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(in 1844) and more than 50 years for other European countries to implement the script he invented (in 1878). The United States began using Braille nearly a century after its invention in 1917 (Bavcˇar 2009: 10). Act No. 435/2004 Coll. on Employment stipulates that employers with more than 25 employees must employ 4 per cent of people with disabilities. In Slovenia the quota is between 2 and 6 per cent depending on the type of organisation or enterprise; the smallest quota is for governmental jobs and the largest for industry. See Act on the Promotion of Employment (Wapiennik 2009). I refer to McNamee and Miller (2004), who showed that societal resources are not distributed primarily on the basis of individual merit (intelligence, high work ethic, moral, personal attitudes, integrity, abilities etc.), and that non-merit factors such as inheritance, social and cultural advantages, discrimination, unequal educational opportunities and prejudices highly influence a person’s economic, social and symbolic status in society. They call it the ‘meritocracy myth’ and show that there is a gap between a person’s merit and his or her actual success. Czech Republic, Estonia, Hungary, Lithuania, Latvia, Poland, Slovakia, Slovenia. Bulgaria, Romania. In Slovenia the monthly payment is 70 per cent of the minimum wage, which is much below the poverty line. For instance, Law on Employment 2004 in Czech Republic; Employment Strategy of the Republic of Bulgaria for 2008–15; Social Welfare Act 2009 and The Labour Market Services and Benefits Act 28 from 2006 in Estonia; Rehabilitation Allowances Act of 2007 in Hungary; Vocational Rehabilitation and Employment Act 2004 in Slovenia; The Labour Code in Latvia; Law on Social Integration of Disabled People 2004 and the Law on Support for Employment 2006 in Lithuania; Act on Vocational and Social Rehabilitation and Employment of Persons with Disabilities in Poland 2004 (Zaviršek and Gorenc 2009, Šiška 2009, Panayotova 2009, Könczei and Horváth 2009, Sakkeus, et al. 2009, Calite 2009, Ruškus 2009). Social Care of Mentally and Physically Handicapped Persons Act, 1983. Republic of Slovenia (2010) ‘Porocˇilo o uresnicˇevanju’API 2007– 2013 v letu 2009’, p. 15, available at http://www.mddsz.gov.si/fileadmin/mddsz.gov.si/pageuploads/ dokumenti__pdf/api2009_net.pdf (accessed 3 December 2012). There are two types of sheltered workplaces in Poland: sheltered enterprises (zakłady pracy chronionej) and occupational activity enterprises (zakłady aktywnos´ci zawodowej) (Wapiennik 2009). Public Welfare Institutions in Slovenia 2010, available at www.stat.si (accessed 27 September 2011). This fact goes beyond the region presented in this chapter. In Turkey, for example, more than half of the 9 million people classified as disabled are illiterate and only 21.7 per cent of them participate in the labour force (Tufan et al. 2007).

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Mitra, S., Posarac, A. and Vick, B. (2011) Disability and Poverty in Developing Countries: A Snapshot from the World Health Survey. Washington D.C.: Social Protection and Labor Division, World Bank. Nakamura, K. (2006) Deaf in Japan. Signing and the Politics of Identity. New York: Cornell University Press. Panayotova, K. (2009) ‘Report on the employment of disabled people in European countries. Country: Bulgaria’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/BG-ANED%202009%20Employment%20 Report%20Final.pdf (accessed 12 December 2010). Petek, R. (2010) ‘Srecˇni, da lahko delaj’ [Happy to work ], Vecˇer Daily, 22 December 2010, p. 19. Phillips, S. (2011) Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington and Indianapolis: Indiana University Press. Pinto, P. (2010) ‘Beyond the state. The making of disability and gender under neoliberalism in Portugal’, in S. Braedley and M. Luxton (eds) Neoliberalism and Everyday Life. Montreal & Kingston, London, Ithaca: McGill Queen’s University Press. Po-ying Ho, A. and Kam-tong, C. (2010) ‘The social impact of work-integration social enterprise in Hong Kong’, International Social Work, 53(1): 33–45. Raymond, P. D. (1989) ‘Disability as dissidence: The action group to defend the rights of the disabled in the USSR’, in W. O. McCagg and L. Siegelbaum (eds) The Disabled in the Soviet Union: Past and Present, Theory and Practice. Pittsburgh: University of Pittsburgh. Rifkin, J. (1995) The End of Work. New York: G. P. Putnam. Ruškus, J. (2009) ‘Report on the employment of disabled people in European countries: Lithuania’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/LT-11-ANED%202009%20Task%206%20 Request-08B%20-%20Country%20update%20Employment%20-%20report%20-%20 final.pdf (accessed 10 December 2010). Sakkeus, L., Pall, K., Tampere, H. and Kreitzberg, M. (2009) ‘Report on the employment of disabled people in European countries: Estonia’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/ EE%20-20ANED%202009%20Employment%20Report%20Final.pdf (accessed 10 December 2010). Scott, K. and Mete, C. (2008) ‘Measurement of disability and linkages with welfare, employment and schooling: The case of Uzbekistan’, in Mete, C. (ed.) Economic Implications of Chronic Illness and Disease in Eastern Europe and the Former Soviet Union. Washington D.C.: The World Bank. Scully, J. L. (2008) Disability Bioethics: Moral Bodies, Moral Difference. Lanham, Boulder, New York, Toronto: Rowman & Littlefield. Shakespeare, T. (ed.) (1998) The Disability Reader: Social Science Perspectives. London: Cassell. Šiška, J. (2009) ‘Report on the employment of disabled people in European countries: Czech Republic’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/CZ%20-%20ANED%202009%20 Employment%20Report%20Final.pdf (accessed 10 December 2010). Slomšek, A. (2006 [1857]) Blaže and Nežica in the Sunday School. Celje: Celjska Mohorjeva Družba. Social Welfare Institute of the Republic of Slovenia (2008) ‘The analysis of the activities of sheltered workplaces in Slovenia’, Ljubljana: ISV. Stiker, H. (2000) A History of Disability. Michigan: University of Michigan.

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Thomas, P. (2005a) ‘Mainstreaming disability in development: India country report’, Disability Knowledge and Research, available at http://www.healthlink.org.uk/PDFs/ Mainstreaming-disability-in-dev-India-country-report.pdf (accessed 10 June 2010). Thomas, P. (2005b) ‘Disability, poverty and the Millennium Development Goals: Relevance, challenges and opportunities for DFID’, Gladnet Collection Paper 256, available at http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1257 &context=gladnetcollect Tufan, I., Yaman, H. and Arun, O. (2007) ‘Disability in Turkey’, International Social Work, 50(6): 839–45. Turner, D. M. and Stagg, K. (eds) (2006) Social Histories of Disability and Deformity. Abingdon and New York: Routledge. UNDP Ukraine (2008) Social Inclusion of People with Disabilities through Access to Employment. Kyiv: UNDP, available at http://www.undp.org.ua/files/en_59773Project_ Document_JP_disability_ENG.pdf (accessed 4 February 2012). van Parijs, P. (1992) Arguing for Basic Income: Ethical Foundations for a Radical Reform. London, New York: Verso. Wapiennik, E. (2009) ‘Report on the employment of disabled people in European countries: Poland’, Academic Network of European Disability experts (ANED), available at http:// www.disability-europe.net/content/pdf/PL-11-ANED%202009%20Task%206%20Request08B-Country%20update%20Employment%20-%20final.pdf (accessed 10 December 2010). Yeo, R. and Moore, K. (2003) ‘Including disabled people in poverty reduction work: “nothing about us without us”’, World Development, 31(3): 571–90. Zaviršek D. (2002) ‘Pictures and silences: memories of sexual abuse of disabled people’, International Journal of Social Welfare, 11(4): 270–85. Zaviršek D. (2006) ‘Disabled women’s everyday citizenship rights in East Europe: examples from Slovenia’, in J. Lukic´, J. Regulska and D. Zaviršek (eds) Women and Citizenship in Central and Eastern Europe. Aldershot: Ashgate, pp. 62–87. Zaviršek, D. (2009) ‘Social work with adults with disabilities: an international perspective’, British Journal of Social Work, 39(7): 1393–1405. Zaviršek, D. (2010) ‘The right to work: The ethics of disability and the new ethical dilemmas’, in D. Zaviršek, B. Rommelspacher and S. Staub Bernascone (eds) Ethical Dilemmas in Social Work. International Perspectives. Ljubljana: Faculty of Social Work. Zaviršek, D. and Gorenc, K. (2009) ‘Report on the social inclusion and social protection of disabled people in European countries: Slovenia’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/ SI-4-ANED%202009%20Task%206%20Request-9B-Country%20update%20 SPSI%20-%20report%20final.pdf (accessed 10 December 2010). Zaviršek, D. and Gorenc, K. (2010) ‘Equality of educational and training opportunities for young disabled people: Slovenia’, Academic Network of European Disability experts (ANED), available at http://www.disability-europe.net/content/pdf/Report%20on%20 equality%20of%20educational%20and%20training%20opportunities%20for%20 young%20disabled%20people%20-%20Slovenia.pdf (accessed 10 June 2012).

10 The challenges of operationalizing a human rights approach to disability in Central Asia Hisayo Katsui During the Soviet era and after their sudden independence in 1991, Central Asian countries were a hidden part of the world, especially in terms of disability and international development. When I started my PhD study (Katsui 2005) on disability organizations in Central Asia in 2000, I had great difficulty in finding relevant information. Times have recently changed. The series of “counter-terror” interventions in Afghanistan, the presence of natural resources, particularly in Kazakhstan and Turkmenistan, and various ethnic and political conflicts have raised the international profile and significance of the Central Asian region. Severe material and social deprivation, especially in Tajikistan and Kyrgyzstan, has further stimulated the interest of the international development community in the region. Yet, the lives of disabled people and activities of their organizations are still largely neglected. Based on the findings of my PhD study between 2000 and 2005 and an evaluation study from 2008–9 (Katsui 2009), this chapter sheds light on the challenges of operationalizing human rights-based approaches to disability in the specific context of Central Asia.1 The first part of the chapter outlines disability issues in Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan and Uzbekistan. The theory of human rightsbased approaches is subsequently introduced to understand how and why nongovernmental organizations (NGOs), in this case disability organizations, are often seen as important vehicles for reducing discrimination and promoting equality. After discussing the general conditions in which disability organizations in Central Asia must operate, I analyse a case study based on a Kazakh disability organization to highlight the challenges and even downsides of human rights-based approaches in Central Asia. The chapter concludes by discussing the practical implications of human rights-based approaches to disability in the region.

The Central Asian context: the normalization of discrimination The Soviet Union did not respect the law or people’s rights. People were not in the centre then. For instance, the International Year of Disabled People of the UN [United Nations] was not promoted, but was ignored in the Soviet Union. Instead we were told ‘there are no disabled people, there is no problem.’ (Uzbek disabled person E, cited in Katsui 2005: 43)

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During the Soviet period, disabled people were categorized into three groups depending on their impairments (cf. Fieseler in this volume). The official categorization determined pension amounts, social benefits and wider employment prospects. The category system was premised on a supposed healing cycle in which a person was temporarily sick or injured and expected to recover after treatment and rehabilitation. Disability assessments were thus only temporary and repeated examinations by medical personnel, often annually, were needed to maintain official status as a disabled person. The Soviet approach resembles a medical model of disability with a strong focus on bodily functioning rather than disabling social factors. Under this system, disabled people were therefore regarded as abnormal, firstly because they were not “able to work” (netrudosposobnyi in Soviet terminology) and secondly because they could not be “cured.” The official term “invalid” was used to describe disabled people who were not considered employable and thus supposedly not worthy of a place in Soviet society. The official condemnation of disabled people reached a peak in the late Stalinist period, when many were forced to resettle in labour colonies, “the most infamous of which is the Spasskaya labor colony near Karaganda, Kazakhstan, to which 15,000 disabled prisoners were sent in the late 1940s and early 1950s” (Solzhenitsyn 1985, as cited in Phillips 2009: 25). Despite this harsh example in Central Asia, it is important to note that although the Soviet Union tended to force disabled children and adults into isolated residential homes, such institutionalization was less widely used in Soviet Central Asia. To be more precise, disabled people in Central Asia were more commonly imprisoned at home by highly inaccessible architecture so that they were hidden from wider society. This social exclusion was promoted by the fact that very few disabled people worked during the Soviet period, with the possible exception of blind and deaf adults, some of whom found [low-skilled] work in production lines managed by semi-state organizations of deaf people and blind people (Werner 1995). However, Soviet citizens with physical or mental disabilities lacked both associations purporting to support their interests and official countenance that they could and should work. Indeed, physically disabled people were given medical identification cards that categorically stated their “inability to work.” The Soviet regime’s diagnosis of disability as synonymous with impairment and incapability had powerful consequences for the lives of disabled people. The state system assumed and enforced their passivity, thereby contributing to the huge physical inaccessibility and social prejudice against them in Central Asia today. After the Soviet Union, all the problems of disability which had been hidden appeared on the surface. We realized that there were many disabled people. It turned out that we did not have any accessible infrastructure. We then faced problems. If our government had done something about the problems during that time, we wouldn’t face them now. (Uzbek disabled person C, cited in Katsui 2005: 45–46) The realities of life after independence in 1991 have been devastating for disabled people in Central Asia. The move away from the Soviet planned economy brought

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hyperinflation and all countries went into negative economic growth, while political stability was largely maintained, except in Tajikistan which experienced a civil war between 1992 and 1997. In other words, all countries experienced a huge fall in well-being after 1991. Ethnic diversity and religious divisions in the region have also caused tensions. When it comes to disabled people in the region, independence worsened their lives both in socioeconomic terms and because decision-making continued to maintain a top-down approach with little consideration of their voices. Their social support system largely collapsed, greatly affecting disabled people and their families. One concrete example of the little attention paid to this specific group of the population is the lack of information on disabled people: USAID (2009: 3) claims that Central Asian countries do not have relevant national databases and statistics. Even when statistics have been collected, such as in Kazakhstan where disabled people are about 3 per cent of the entire population and in Kyrgyzstan where they number about 2 per cent, the numbers seem to be much lower than international estimates of 15 per cent of adults of a given population (World Health Organization and the World Bank, 2011: 27) or 7 per cent in neighbouring Russia (Zagirtdinova 2005: 215). This is because official statistics in the region still depend on the Soviet-oriented (medical) model of disability and thus fail to capture a comprehensive picture of disabled members of society (UNDP Kazakhstan 2009: 111). For example, statistics ignore many of the people disabled by conflict in the region, including children. The following interview excerpt aptly depicts the medical approach of the region: During this period [when a disability category is given], disabled people are under the control of local hospitals in every district. They are cared for by doctors from the Categorization Department. They provide rehabilitation, different kinds of rehabilitation. (...) And the people improve their health and start to work again. (Uzbek government official B, cited in Katsui 2005: 47) This quote highlights that disability policies prioritize the “expertise” of professionals and focus on individuals’ health rather than wider elements of their disability. Yet when it comes to national health and social services, disabled people in Central Asia are compelled to be vulnerable because they need certain services to survive that had often deteriorated considerably after independence. As in the Soviet period, employment opportunities for disabled people in Central Asia are very scarce. In Kyrgyzstan, for instance, one study found that only 16.5 per cent of disabled women work despite their capability and willingness to work (Alybaeva 2007). In Tajikistan, it was only 14.1 per cent (Kalonov 2007). Such studies have found that those who manage to find employment are poorly paid even by local standards. They thus rely mostly on their disability pension and to some extent the financial support of families and relatives. However, official allowances are too small to make ends meet (Alybaeva 2007; Kalonov 2007; Shakirova 2007). Poverty prevails in post-war Tajikistan where many

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disabled women cannot even afford bread on a daily basis. Consequently, every third disabled women in the study “limited their daily food intake in order to assist their family’s financial situations” (Kalonov 2007: 17). Furthermore, far from all disabled people are able to rely on small pensions because it is very difficult to obtain an official disability assessment and related allowances due to bureaucracy, corruption and stigma, as will be discussed later. The situation is slightly more positive in Kazakhstan where economic growth on the back of high prices for natural resources means that welfare services are relatively better funded than in other Central Asian countries. Despite the harsh conditions, disabled people in Central Asia frequently do not complain to the authorities because many of them are afraid of negative consequences such as harassment and also because they are unaware of their rights. For instance, the aforementioned Tajik study revealed that only 7.2 per cent of rural disabled women were aware of their rights and entitlements as disabled citizens (Kalonov 2007: 23). The same study clarified that only 0.7 per cent of the women research participants appealed to government officials concerning their experiences of discrimination and rights violations. They refrain from making their voices heard due to fear, lack of confidence and embarrassment (ibid.: 23–24). In such circumstances, self-censorship and remaining silent are coping strategies against authoritarian and often repressive governments, particularly in Turkmenistan and Uzbekistan, but also in relatively more democratic countries such as Kyrgyzstan and Tajikistan. Kazakh people have “some room” for civic activism and bottom-up change (Goldstein 2008: 2). For instance, a development cooperation project in 2005 with Finland led to the first state-funded personal assistant service for disabled people in the post-Soviet region (Muroke 2008). Having witnessed the service overseas with their own eyes, the chairpersons of several disability organizations successfully pressured the government to start this service in Kazakhstan. Although it is only available to severely disabled people and the salary for personal assistants is low, this example shows that there is some room for negotiation between the Kazakh government and civil society. Bribery is another coping strategy for disabled people in Central Asia given that government structures in the region are often corrupt with widespread informal payments required to access bureaucratic, health and welfare services as well as humanitarian aid, particularly in Tajikistan (Kalonov 2007: 17). Eight per cent of respondents in a Kazakh study of disabled women mentioned corruption as their biggest problem (Shakirova 2007: 15). Many interviewees shared similar experiences of paying bribes to receive their disability assessment and thus disability allowance: Last year, her sister gave her enough money to get her disability status more easily. The money was used for bribes. Now everyone should pay to get an assessment that is valid for several years because they are fed up with going through the same procedure every year always from the beginning. It’s very difficult and requires lots of money. (Female disabled person A in an Uzbek urban area, cited in Katsui 2005: 54)

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Such a reality exacerbates the profound vulnerability of disabled people. In short, current governments have largely maintained the medical approach of disability inherited from the Soviet Union and continue to undermine the lives of disabled people in many cases. People are therefore forced to rely on material support in the absence of more inclusive or supportive programmes that would promote independence and equal opportunities. The combination of Soviet-era discrimination with intense poverty and scarce state resources after independence has left disabled people in Central Asia highly isolated: There should be some [metaphorical] key to encourage disabled people which would be very necessary when working with them. I would like to have such a key. For example, that girl whom I mentioned, she became very inward-looking saying, ‘I am a sick person. So I cannot go out and I cannot do anything.’ She isolated herself and committed suicide. (...) The death rate [among disabled people] has increased over the last years. People die because they cannot overcome psychological barriers and so they commit suicide. (Chairperson H of a disabled people’s organization in a Kazakh urban area, cited in Katsui 2005: 86) Despite the fact that many disabled people face social oppression on a daily basis, this issue has attracted very little attention in Central Asian policy circles and society because of the group’s physical, political and social isolation from the mainstream. They are often referred to as “second-class people” even by the people closest to them, such as family and neighbours (Alybaeva 2007; Kalonov 2007). Endless examples were shared during my research: When you are out in a wheelchair, you are like a monkey in a cage and you grow tired with that. You can only be in your flat or outside on the street. You cannot go to any kind of building, hospital or something. And there are children staring at you, people pointing with their fingers, so you are frustrated with it. (Turkmen participant C, cited in Katsui 2005: 60) When I use public transport, I use it very rarely, but when I use it, even if I am not so disabled to need a wheelchair, I feel attention on me all the time. When you are on the streets in these countries, you don’t see disabled people. That’s not because there are no disabled persons in our countries, but due to the attitudes of people. People are very intolerant and rude, like ‘Why are you here? You should be sitting at home’. (Kyrgyz participant D, cited in Katsui 2005: 60) Combined with a highly inaccessible environment, the low self-esteem induced by societal discrimination means that disabled people in Central Asia tend to isolate themselves. This isolation can cause mental pain, which often leads to

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self-blaming and desperation. Fighting such psychological barriers is too difficult for many. The most common way to deal with the mental pain is to remain passive and stay at home rather than trying to fight the major environmental and social barriers to accessibility and social inclusion. Here there is a potential risk that disabled Central Asian citizens internalize the extreme prejudice of society by believing that their difficulties stem from their impairments. Erving Goffman’s sociological analysis of stigma found that ‘the stigmatized individual is also asked to see himself from the point of view of a second grouping: the normals and the wider society that they constitute’ (Goffman 1963: 115), a tendency that underpinned many of my interviews with disabled people in Central Asia: Your point of view depends on society and its environment. So it does not depend just on you. Your parents teach you and your friends say something and you form your point of view with the help of them. So it depends who you are surrounded by. These things are related. (Male non-member A in an Uzbek urban area, cited in Katsui 2005: 69) It is a strong Central Asian tradition that families look after members in need of care and support and there is therefore often great reluctance to place disabled relatives in residential care institutions, as was common in other parts of the Soviet Union (Zagirtdinova 2005: 216). Although positive in some ways, such practices mean that disabled children in this region are hidden at home and thus remain excluded from existing statistics and services (UNICEF 2005: 19–24). For instance, the majority of disabled children are excluded from existing educational provision such as special schools, integrated mainstream schools and home education by local school teachers visiting for several hours a week. The enrolment rate at special schools is only around 1 per cent in this region, which is much lower than in other post-Soviet countries that inherited a similar system of special schools for disabled children from the USSR (ibid.). Poverty and a lack of resources are common reasons for schools not to reach out to disabled children at home. In this way, the issue of disability is individualized within a family to become a ‘private problem’ rather than a task for society. At the same time, nondisabled people remain ignorant of the whole issue of disability because of the isolation of many disabled people at home. Exclusion thus reinforces and normalizes prejudice. This massive mechanism against disabled people has reinforced discrimination in all Central Asian countries (more about the mechanism in Katsui 2005: 59–71).

Human rights-based approaches to disability Until the end of the Cold War, international human rights talk was ideologically tinged. For instance, Uvin (2004: 14) delineates three groups of human rights in line with their content and geographical relevance. The first category encompasses civil and political rights that are also cited as ‘negative rights’. Here attention focuses on the non-violation of these rights, particularly by governmental

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actors. This type of rights talk was dominant in the West. The second category concerns economic, social and cultural rights that are cited as ‘positive rights’ including an adequate standard of living. It is in this sense that the Soviet Union can be said to have had a rights discourse, for some scholars argue that a social contract existed between the Soviet regime and majority of the population according to which socioeconomic well-being was exchanged for acquiescence to the political status quo (Cook 1993). Even today social rights have saliency in the post-Soviet region, both in terms of popular expectations and government actions (e.g. Henry 2009). The third category of human rights is collective or solidarity rights such as rights to development and self-determination, the latter of which is related to decolonization from the 1960s onwards. This category of rights is strong in non-Western contexts and influenced the realm of international development in the 1990s. This threefold categorization may be too simplistic to accommodate the complex practice of human rights, which in reality are fluid and highly contingent, but it is still analytically useful for understanding the development of human rights in a country or region. Human rights-based approaches have been replacing hitherto medical and charity models of disability around the world because the latter tend to reinforce rather than challenge discrimination. Human rights approaches are often understood in a narrow sense as the legal frameworks for promoting and protecting a predetermined list of rights. In this interpretation, people who are aware of their rights and feel that they have been infringed will file a court case appealing to a list of prescribed rights. Such justiciability is often highlighted as a core part of the approach (Teranaka 2006: 81). Thus when a human rights-based approach is narrowly defined, it has a strong linkage to international law (Seppänen 2005: 8) as well as national legislation. The linkage to international law can be a powerful tool when all countries in the world have ratified at least one of the seven core United Nations human rights treaties and 80 per cent of states have ratified four or more (OHCHR 2006: 5). On the other hand, the reliance on legal documents to promote rights and well-being also demands certain procedures, not least an accessible legal system and an independent judiciary that adheres to notions of rights, both of which are not forthcoming in Central Asia. Wider definitions of human rights approaches focus on the operationalization of rights outside the legal arena. Attention is paid to both the means (Frostell 2006: 3) and outcomes of supporting human rights (Uvin 2004: 123). Actual processes are prioritized (ibid.: 165) and based on principles of empowerment, participation, non-discrimination, and accountability with a special emphasis on vulnerable people (Lundström-Sarelin and Mustaniemi-Laakso 2007). In theory at least, the process becomes participatory and transparent with equality in decision-making and the sharing of outcomes among stakeholders (Sengupta 2000b: 21–22, cited in Uvin 2004). There is therefore a recognition that equality cannot be guaranteed by simply removing formal barriers and obstacles; rather, positive action and intervention is required. In this very respect, the participation of disabled people and their organizations becomes essential for human rights-based approaches, which will be discussed further in the next section.

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Notions of human rights have become central not only in international development discourse, but also in disability discourse (cf. the joint report from the World Health Organization and the World Bank 2011: 9–10). The world witnessed a clear shift from medical or charity approaches to a human rights-based approach to disability when the UN Convention on the Rights of People with Disabilities came into force in May 2008. This approach to disability in international development has fourfold significance for disabled people in Central Asia. Firstly, it actively strives to include all members of society in the mainstream discourse including the most marginalized groups such as disabled people. In the Central Asian context, disabled people have been both politically and physically hidden and therefore one of the most vulnerable groups of people, making notions of human rights very relevant to them. Secondly, the approach requires rightsbased actions instead of the charity that has dominated the disability activities of many international development organizations. Charity does not challenge the structural status quo that reinforces discrimination against disabled people. The human rights approach, however, aims for real change not only in policy and theory, but also in operationalization. Achieving concrete change is a great challenge in Central Asia due to its authoritarian regimes, which have strongly maintained charity-oriented approaches to disabled people. This makes the third dimension of the approach – an obligation upon states to secure the human rights of concerned people – highly relevant to Central Asia. Finally, a human rights approach demands transnational obligations. Central Asian countries increasingly engaged with international actors after their independence, for instance becoming recipients of development cooperation, which started to affect the lives of disabled people in the region. These four dimensions are the most prominent ones for disabled people in the “global South” (so-called “developing countries”), including Central Asian countries, in the quest for ultimate equality and equal opportunity (Katsui and Kumpuvuori 2008).

Civil society in Central Asia Human rights approaches often see disability organizations as key actors in operationalizing rights due to their supposedly bottom-up nature and advocacy stance. It is only possible to understand the activities of disability organizations in Central Asia in the broader context of the region’s civil society sector. Civic activism is a new phenomenon that only became politically tolerated and therefore publicly visible in the perestroika period of the late 1980s, before which civil or public activity independent of the Soviet state was not allowed (Carley 1995: 299). Only a few non-state organizations were allowed to operate during the Soviet period, including the Soviet associations of blind and deaf people discussed above, but they were nevertheless linked to dominant party-state structures and restricted in their activities and scope. After independence from the USSR, the number of nongovernmental organizations (NGOs) increased dramatically in Central Asia, except in Turkmenistan and Uzbekistan (OSCE/ODIHR 2000: 9). The increase in number, however, is not necessarily a sign of greater democracy and bottom-up

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political activism due to the important division between government-oriented organizations and new NGOs (Hunt 2001: 7). In contrast to many Western countries and some other contexts, government-oriented NGOs (GONGOs) occupy a significant space in Central Asian civil society due to the continuing influence and control of governments. They stand in contrast to organizations without close ties to the government, a category that can be further sub-divided into international organizations working in Central Asia and local NGOs overwhelmingly funded by international donors. Independent organizations that hold views against governments are sometimes not allowed to officially register, which is important because activities without registration are considered illegal. NGOs in the region are therefore ‘entangled’ in their countries’ bureaucratic systems (USAID 2009: 3). Within this general trend, the tolerance of Central Asian governments towards civil society activities varies between country: in Kazakhstan, NGOs have started to negotiate and cooperate with the government, while many NGOs in Tajikistan, Turkmenistan and Uzbekistan are subject to intensive scrutiny and harassment and have been pressured to close (Giffen et al. 2006: 83 and 118) even though ‘abuses continue in all countries’ (ibid.: 119). Relations with non-governmental organizations are hampered by government expectations that they should act in accordance with government policy and practice, which limit the space and strategy for NGOs. In recent years, national and local governments in Central Asia have started to collaborate with new NGOs in order to plug gaps in public services, for example healthcare and welfare. Governments have started to appreciate the professionalism of new NGOs. For example, disability NGOs are recognized as having ‘better expert knowledge and newer ways of working’ in Kazakhstan (Giffen et al. 2006: 123). However, the implication of this type of cooperation is that NGOs act largely as ‘service providers’ rather than ‘advocacy organizations’ that could bring new ideas and even challenge the government. Such tensions in the functions and activities of non-governmental organizations exist across the post-Soviet region (cf. Kulmala 2009). Both new NGOs and GONGOs thus co-exist and comprise civil society in Central Asia. It therefore becomes clear that, when taking a closer look at the facts and explanations behind the numbers of NGOs, the reality is quite different from the one with which the West is familiar. It is also important to go beyond conventional understandings of NGOs and civil society as interest groups. Aside from the Western type of organizations, traditional neighbourhood committees or community-based groups, for example mahallas in Uzbekistan and Tajikistan, are relevant actors for disabled people. They identify people in need and ensure a social safety net for them. For instance, they take care of repairing homes, weddings, funerals, family problems and are even used to distribute social assistance (Freedom House 2003; UNDP 2003; Coudouel and Marnie 1999). Mahalla activities were not encouraged under the Soviet regime, but they existed throughout the Soviet period and continue to shape social and public life, especially in rural areas. While their work highlights that the diversity of civil society in Central Asia goes beyond Western

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understandings, new independent organizations are the most relevant actors in relation to the operationalization of disabled people’s rights in the region.

Disability organizations in Central Asia Unlike non-governmental organizations in many other sectors, the history of Central Asian organizations in the disability sector goes back to the 1920s, when the Soviet Union created organizations for blind and deaf people. These associations had centralized structures through which top-down decisionmaking was implemented in all local area branches. This vertical system meant that institutions claiming to represent particular groups of disabled people existed that automatically became national structures following independence. It was however only in the perestroika period that a Soviet organization of physically disabled people was established (Phillips 2009). Soviet-era organizations of blind people, deaf people and physically disabled people remain the main GONGO structures working with disabled people in Central Asia. Nowadays their regional and city sub-divisions are usually known as associations or ‘societies’ of disabled people and tend to be registered as independent organizations, which increases the number of disability organizations given in statistics. Although often connected to government structures, they are led by disabled people themselves. In this way, Central Asian GONGOs as well as newly established NGOs of disabled people conform to Western understandings of ‘disability organizations’ as being led by disabled people rather than for them by non-disabled people. At least formally, the work of these organizations also matches approaches in international development which state that participation is a crucial aspect of civil society activity (Nederveeh Pieterse 2001; Fowler 2000). However, the automatic connection between disabled leaders and disabled people’s interests assumed to exist in Western literature is not necessarily accurate in the Central Asian context where civil society organizations must largely conform to dominant political ideas. In addition to the ‘official’ associations – which only cover some groups of disabled people – the number of disability organizations in some Central Asian countries has generally increased over time (Asian Development Bank 2011: 3) with the exceptions of Uzbekistan and Turkmenistan where NGO activities in general are complicated by strict government control (Giffen et al. 2006: 118). However, the number of organizations is only a superficial indicator of the strength of Central Asian civil society for a number of reasons. Firstly, around half of the organizations are GONGOs. Furthermore, international donors have increased the number of registered NGOs by creating organizations as part of time-limited projects. When the projects are completed, these registered NGOs typically become inactive. Nevertheless, disability is a relatively active field among the NGO sector in general. Disability organizations are becoming an important component of civil society in Kazakhstan, where 4.4 per cent of organizations work on disability issues and a further 3 per cent with disabled

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children. For comparison, 15 per cent of organizations focus on environmental issues and 13.1 per cent on social protection (Kazakh Government 2003).

Relations between disability organizations and other social and political actors It’s very difficult to struggle for human rights if the situation is like this. Because, I feel that if I explain the situation of blind children, government officials do not feel responsible for what they are supposed to do. We have to struggle, but it’s very difficult here. You can start something, but you get tired of fighting. And you start feeling ‘Let things stay like this.’ I want to improve the situation in residential institutions, but parents are afraid of the government. So I cannot get the cooperation of the parents to have greater impact. So I feel very alone here. I report to international organizations so that questions are raised later. I try to find cooperation more from abroad – like international agencies – rather than from inside the country. I find sponsors from international organizations and I am very grateful to them. (Tajik person with disability E in an urban area, cited in Katsui 2005: 127) Networking with different actors is indispensable for the development of Central Asia’s disability movement in the absence of resources and a favourable political climate for self-organization from below. However, relations between disability organizations are relatively under-developed. ‘Collaboration’ is understood as a ‘personal relationship among leaders rather than cooperation in organizational activities’ (Chairperson G in an Uzbek rural area, cited in Katsui 2005: 116). Sometimes, donors attempt to facilitate cooperation between projects and link different disability organizations in the name of ‘capacity building’. For instance in 2003 in Uzbekistan, a coalition of 28 NGOs and disability organizations campaigned for inclusive education with the funding of an American NGO. However, such linking and networking activities rarely strengthen the voices of organizations. The above-mentioned campaign, for instance, failed to include GONGOs (more detail in Katsui 2005: 116) and thus did not attract significant government attention. Conflicts between disability organizations are also common due to diverse agendas, including impairment-specific and financial interests. Disability organizations thus tend to work in isolation, thereby reducing their potential impact. Maintaining relations with governmental structures is one of the defining elements of civil society activity in Central Asia, particularly in Turkmenistan and Uzbekistan where governments tightly control the public sphere. Expressing criticism is easy, if dangerous, but building a good relationship with governments is much trickier. Disability organizations have been struggling to establish relations in the absence of proper channels and mechanisms for influencing government decisions. Moreover, Soviet-era privileges and subsidies to disability organizations for their production lines employing disabled people were cancelled towards the end of the 1990s in most countries in the region. This move frustrated

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government-organization relations and made disability organizations and their members financially vulnerable, which are hardly promising conditions for the development of civil society activity. The lack of resources for many organizations, especially in countries where overseas support for civil society is tightly controlled, makes connections with local sponsors an important lifeline. The relations that disability organizations have been able to establish with local sponsors have mostly involved ‘begging’ for resources. After the cancellation of tax breaks and financial privileges in the 1990s, asking for support from sponsors became a regular activity for disability organizations. Nevertheless, local sponsors lack understanding of both voluntary activities and disability and may not share their priorities and values. For instance, one Kazakh disability organization I met in 2005 only received one positive answer out of 300 letters written to local enterprises. Even if sponsors do donate some money, they do not give much and do not engage in long-term relationships with the disability organization: If I apply by letter, they can help us only once. We don’t have a concrete long-term sponsor. We need to visit different companies and organizations. Many of them promised to give help, but they didn’t keep their promises. (Male staff A in an Uzbek rural area, cited in Katsui 2005: 125) However, given the extreme need that many disabled people live in, even traditional forms of support like money, toys and food can meet part of the needs, although not rights, of disabled members. Indeed, tensions between daily survival and broader citizenship rights are very relevant to disabled people in the region. Relations between disability organizations and Central Asian mass media are developing, although the media is under tight governmental control. Central Asian newspapers and television channels, including state-owned companies, have started to broadcast disability-related reports, but in a tone that suggests pity, charity and paternalism: P: Articles have the tone of guardianship. Journalists describe us as a separate community. ‘Look at them. They are like this and that.’ They don’t write about us as part of them working together. R: Can’t you influence the content of the articles that are published? P: I know the process of writing an article. The journalist gives me the draft. Even before the interview, I warned them not to write an article that arouses only pity in people. Though they knew it, when they wrote the article, there was some kind of sympathy in it. The only thing I could do was to change the obviously sympathetic parts of the drafts. But most importantly I could not change the mentality of these journalists. (P: Kazakh participant D; R: researcher, cited in Katsui 2005: 122) The paternalistic attitude of journalists is troubling when disability organizations, at least independent ones, seek to deliver messages of equality, rights and

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inclusion. A further complication is that a considerable proportion of disabled people in the region do not necessarily have access to television, newspaper and radio due to extremely low living standards, which limits the media’s potential to raise awareness of human rights. Compared to the Soviet period (Phillips 2009), it is however positive that disability issues are featured in the press and on screen, albeit within an unhelpful framing of sympathy and commiseration. Given these domestic circumstances, building connections with international partners has become very important for Central Asian disability organizations seeking to make positive changes locally, nationally, regionally and internationally. However, international programmes often fail to consider the specificities of the region and individual countries (cf. Kandiyoti 1999). Many international efforts have failed because they did not pay sufficient attention to realities on the ground (Carley 1995). Broad criticisms made against international donors are also applicable to their work in Central Asia, such as weak coordination amongst organizations, strong focus on externally formulated agendas and a lack of accountability (Garbutt and Heap 2003). For instance, my evaluation study (Katsui 2009) revealed that a Kazakh disability organization involved in an international project did not know the level of financial resources available for the project until they asked for the information from the Finnish counterpart in the middle of the project. Without such crucial information, it was rather difficult for the Kazakh side to plan their activities. Local organizations are therefore often in an unequal relationship with their foreign partners, which can undermine effectiveness and the development of local solutions. These realities of international cooperation have led some Central Asian disability organizations to develop their own modalities for implementing foreign ideas and concepts in nuanced ways that fit their contexts, which will be explored with a case study in the following section.

Case study of Shyrak: a Kazakh organization of disabled women In the field of disability, Central Asian countries still follow many policies and practices of the USSR, but they are increasingly exposed to human rights approaches through international cooperation. It is noteworthy that many disability organizations today expect the United Nations Convention on the Rights of Persons with Disabilities to play a significant role in promoting the human rights of disabled people in this region, even though only Turkmenistan has so far ratified the Convention. During fieldwork in the region in 2008, many disability activists shared their views on the importance of their own organizations based on a human rights-based approach to disability. Global ideas and discourses on human rights are therefore filtering into the region, albeit unevenly since they are interpreted and realized in line with local practices and understandings that inevitably change their meaning. Implementing a human rights-based approach is both an opportunity and a challenge for disability organizations in Central Asia. It is a good opportunity to position hitherto excluded disabled people as equal members of mainstream

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society since the human rights-based approach prioritizes the most marginalized groups of people (OHCHR 2006: 24). The human rights-based approach also demands both national and transnational obligations instead of relying on sporadic paternalistic and charitable approaches. Nevertheless, in practice, many obstacles prevent disability organizations from fully operationalizing the ideas of human rights, if at all. This is evident from the case study of Shyrak, a Kazakh organization of disabled women that was established in 2001. Shyrak has been supported by a number of Western funders.2 Among numerous awareness-raising programmes, the organization pays particular attention to social research on the lives of disabled women (Shakirova 2007; Alybaeva, 2007; Kalonov 2007) and conducted a major research project in 2007 with the funding of a Finnish disability organization. Disabled women can cry about their problems, but that’s not enough. The poverty of our countries means that older people, migrants, poor people etc. get more attention and disabled women remain invisible. We therefore decided to make their situation visible through this research. The government needs figures to learn that we are not small in number and our problems are not small either. (Chairperson of Shyrak) The lack of systematic information, knowledge and awareness about the rights of disabled women in Central Asia was thus the primary motivation for the research and regarded as a crucial foundation for the use of a human rights approach by state and non-governmental organizations. Indeed, the Soviet legacy of near-complete isolation from society still affects disabled people today, meaning that very little is known about their experiences, lives and priorities. Shyrak has been active in disability networking and projects across Central Asia, albeit in line with the varying openness of governments to civil society organizations. Its research project was only possible in three countries – Kazakhstan, Kyrgyzstan and Tajikistan – because associational activities and independent social research are restricted in Uzbekistan and Turkmenistan due to the authoritarian regimes in power. Many activities are thus not implemented to the same extent in these two countries as in the other three countries, which is an important lesson regarding the operationalization of rights-based projects and will be discussed later in this chapter. In line with ideas that the processes of building human rights are as crucial as the outcomes, Shyrak designed the methodology underlying its research in the three countries to promote human rights by defusing power and decision-making to the participants. Participatory methods allowed many disabled women to be involved in the research process as assistants. The use of such methods in Central Asia at this time was quite novel in breaking down the barriers between supposedly “expert” researchers and interviewees. Assistants supported the primary professional researchers by articulating questions, conducting interviews, supporting the data analysis and translating the final report into national languages and

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English. Prior to the interviews, they were also involved in focus group discussions to determine which questions were relevant, empowering and reflected human rights. The research project in Kazakhstan, Kyrgyzstan and Tajikistan reached 250, 450 and 650 disabled women and girls respectively. Many claimed that they had gained experiential learning as well as knowledge through the reports. Their involvement in the research led to positive perceptual changes such as higher selfesteem and self-confidence, which is perhaps even more important than mere knowledge: It was good to be involved as an interviewee because until then nobody was interested in my life. I felt so positive and that I can change my life. Interesting questions that had never been asked made me feel that we are doing important things. For instance, the accessibility question, ‘Where do you want to visit?’ and I thought of museum, theatre, cinema, but I had thought they were not for us. But after being asked those questions, I felt that things can be changed. (Kazakh woman with disability) The research participants thus appreciated both the research process and the results. Five hundred copies of the final report were printed in Kazakhstan, 300 in Kyrgyzstan and 170 in Tajikistan, usually in three languages (the national language, Russian and English). The Shyrak organization held press conferences and also presented the results in seminars attended by government officials. Media coverage was strategically used to address the violated rights of disabled women and increase public awareness of this ‘invisible group’. Unlike the hitherto pitying or sympathetic tone of the media in the region, Shyrak tries to present both statistics and experiences of disabled women as part of society. For instance the Kyrgyz study (Alybaeva 2007) compared the survey responses of different groups of people including disabled and non-disabled men and women. The importance of education was regarded more highly among disabled women (56.4 per cent) than their non-disabled peers (42.3 per cent), while it is striking that 34.5 per cent of disabled women felt that it was unnecessary for a disabled person to receive education, pointing to an internalization of social stigma. The report reveals the nonimplementation of education laws that assert equal access for all citizens and thus discrimination against disabled women in reality. The Tajik report concludes that: The social problems encountered by Tajikistan’s disabled women are not a second-tier cultural problem – in fact they must be viewed as one of the most critical and overwhelming problems facing Tajik society. (…) Disabled women in Tajikistan face discrimination throughout all levels of society. These problems extend even to the rights of marriage and childbirth. Of critical note is the fact that the self-dignity of these disadvantaged women is disparaged as they face discrimination at all levels of society – especially at home and when using public transport. (Kalonov 2007: 2)

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Downsides of the human rights-based approach in Central Asia Although important in promoting the voices and rights of disabled women in Central Asia, the research conducted by Shyrak revealed three significant problems concerning the implementation of human rights approaches in the region: the hierarchy and prioritization of rights; poor awareness among rightsholders and primary duty-bearers; and unmet material needs. A high number of volunteers took part in the research, which was undoubtedly successful in reaching many disabled women and girls. However, the snowball technique used meant that many research participants tended to live in urban areas and had some form of public profile. Certain groups of disabled women were thus excluded. For instance, deaf women were less likely to be included because few research assistants knew sign language. Disabled women in rural areas and people with learning disabilities were also not exposed to the knowledge generated during and after the research in the three countries, let alone in Uzbekistan and Turkmenistan where the research could not be conducted at all. Progressive change focusing on the most marginalized disabled women is therefore difficult in the framework of a small non-governmental project such as this research. There is a real danger that the operationalization of a human rights approach will simply reflect existing power relationships benefiting the [relatively] better-off, as Alston (2005: 806) pointed out in another context. Dynamics of inclusion and exclusion within marginalized groups is clearly an important question that a human rightsbased approach must address. The second weakness in the use of a human rights approach in Central Asia relates to the awareness of both rights-holders themselves and state officials who hold the duty to implement rights. In this specific context, a crucial prerequisite for the effectiveness of a human rights approach is that disabled women are aware of their rights so that they can pressure duty-bearers to fulfil their rights. These duty-bearers must conversely be systematically and structurally prepared to properly respond to such pressures. The Central Asian reality, however, is still far from that required by a human rights-based approach. For instance, many governments in the region seem to have an ‘allergy’ to the term ‘human rights’ and sometimes do not allow non-governmental organizations who use the term to officially register, particularly in Turkmenistan and Uzbekistan. It is difficult for independent organizations to go beyond narrow legal precepts and proactively promote rights and well-being because such activities can be perceived as challenging government thinking and policies. As a result, disability organizations adopt a more nuanced approach on the ground, deliberately using the term ‘empowerment of disabled people’ rather than ‘human rights’ to avoid discursive conflict with governments. The upshot is that awareness of human rights among disabled women, policymakers and staff in welfare organizations is scant and not at the levels desired in an explicit human rights approach. It is however important to recognize successful developments when they occur in Central Asia. Relatively democratic governments in Central Asia have been

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more tolerant towards the idea of human rights. For instance, the new law of 2008 in Kyrgyzstan on disability removed the paternalistic word ‘protection and followed the social model in its content. Another example comes from Kazakhstan, where the Ministry of Social Protection launched a dialogue with disability organizations about how to ratify the UN Convention. After its active advocacy, Shyrak managed to become part of the working group in this process as the original group lacked gender balance. There is thus potential for cooperation between disability organizations and governments on matters related to disability rights. Although awareness of human rights is a crucial first step for promoting the equality of disabled people in Central Asia, it is insufficient when other needs are not met in practice, which is the third challenge. Many participants in Shyrak’s research project experienced positive changes in relation to their self-identity and awareness during and after the research. Such change is indispensable, but not enough when there are huge structural obstacles and barriers to equality. As discussed earlier, poverty, inadequate welfare services, widespread corruption and a highly inaccessible built environment greatly restrict the opportunities and quality of life of disabled people in the region. These large obstacles to the realization of rights mean that the disabled women who learnt about their rights through the research will find it difficult to enjoy and realize them as they lack assistive devices, personal assistants, accessible transportation and money to cover daily essentials. The practical implementation of human rights takes time because so many dimensions of discrimination have to be contested. This challenge is too large for Central Asian disability organizations alone, while many other actors, including international ones, tend to prioritize other issues. The third challenge, therefore, is meeting the urgent needs of disabled women while shifting away from charity and medical approaches towards human rights.

Going beyond the ratification of the UN Convention By January 2012, 109 countries had ratified the United Nations Convention on the Rights of Persons with Disabilities. Ratification is a major step in implementing a human rights-based approach because it transforms the Convention into a legally binding instrument. However, the discussions above reveal many practical challenges for the human rights-based approach to be fully operational, particularly when governments are authoritarian and disabled people have historically been excluded from and silenced in politics and society. The ratification of the Convention is therefore a milestone for some countries that comply with international legal norms, but it is an insufficient condition for many disabled people in Central Asia, especially for the most marginalized persons among them, to enjoy their rights. The current Special Rapporteur on Disability, Shuaib Chalklen (2010), claims that Article 12 is often one of the hurdles for many countries when ratifying and implementing the Convention. This Article stipulates the recognition of disabled people as persons subject to and equal in law. This legal equality is violated in Central Asian countries in many senses since legal systems do not work to defend rights and many disabled people are excluded from using the legal system. In other

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words, a human rights approach in this region needs to go beyond the ratification of the Convention due to Soviet legacies and contemporary trends: a broader approach that does not rely on narrow legal formulations of rights is required. As other chapters in this book demonstrate, Central Asian countries are not exceptional among the former Soviet countries in violating the rights of disabled people. Other countries also face similar challenges such as poverty (Braithwaite and Mont 2008), institutionalization, isolation, social exclusion (Mete 2008) and associational activities (USAID 2009: 3). Soviet legacies continue to have a large influence on the lives of disabled people, albeit in complex conditions of rapid impoverishment and greater exposure to international ideas after 1991. When human rights are not norms in a national context and when the equality and legal capacity of disabled people are not fully recognized, a human rights-based approach tends to be difficult to implement and achieve. This is especially so when the freedom of speech of disabled people and their organizations is not secure. Disability rights discourse in the former Soviet Union therefore needs a nuanced approach that differs from Western countries. For instance, filing a court case against the current regimes would be risky in many ways for a person with or without a disability. A human rights-based approach may not be viable in national contexts where top-down decision-making predominates, such as in Uzbekistan and Turkmenistan. Ideas of human rights therefore need to go through a serious localization process to benefit disabled people. Making a human rights approach relevant to Central Asia requires the recognition that negotiation with governmental structures in this region is more realistic than confrontation insofar as cooperation with policymakers is possible at all (cf. Holland 2008). As pessimistic as it sounds, public protest and legal challenges against the discrimination of disabled people are largely doomed to fail in Central Asia, whether they are conducted by individuals or organizations. In such conditions – when ratifying the Convention does not directly improve the quality of life for disabled people in a country – more attention needs to be paid to improving relations between disabled people and other actors, not least state officials. Even prior to this, networking among disabled people who have been isolated from each other is essential to establish a common platform. These lessons from Central Asia have useful implications for other countries of the former Soviet Union.

Concluding remarks In discussing the activities of disability organizations with a particular focus on human rights-based approaches to disability, this chapter emphasized the specificity of the Central Asian context. Human rights talk is increasingly being criticized for its irresponsible implementation (Kennedy 2004: 30). Few would oppose the idea that human rights language is absolute in its demands (Seppänen 2005: 85). Nevertheless, the discourse itself does not provide operational guidance for achieving concrete and targeted change (Uvin 2004: 30–31). It may be true that conceptually ‘human rights are indivisible and interdependent’ (OHCHR 2006: 2),

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but operationalization mechanisms are weak and unclear in practice (Seppänen 2005: 34). When the Central Asian context is taken into account, this weakness immediately becomes a fundamental challenge because situational analysis, the identification of structural problems and other important and complex tasks are all left to disability organizations in the absence of government willingness to engage in such activities. Moreover, the human rights of disabled people are a highly political topic that goes against the policy status quo in the region. Without implementation tools, the human rights approach will simply remain the ‘moral high ground’ with little practical significance (Uvin 2002, 2004). Today, many Central Asian disability organizations engage largely in service provision activities to avoid conflict with governmental structures. This is their important survival strategy. However, others are increasingly engaging in human rights activities in collaboration with their Western counterparts. Their challenges are not only to reconcile the ‘fish or fishing net’ dilemma that permeates international development, but also to adapt the principles of human rights to their specific contexts, particularly during international cooperation activities where foreign actors may dominate with their resources and ideas. It must therefore be asked whether a human rights-based approach has operational value in Central Asia and whether there are alternatives that better fit with local realities. These are issues that Central Asian disability organizations must answer themselves with their indigenous knowledge. The many causes of discrimination against disabled people in Central Asia, especially disabled women, are rooted in the region’s distinctive history, politics and society. Any form of rights-oriented intervention therefore needs careful adjustment to local context.

Notes 1 Part of this paper was published in 2008 as an article entitled ‘Human rights-based approach and DPOs in Central Asia’ in Journal for Disability and International Development, 19(2): 21–26. I would like to thank Shuaib Chalklen, Lyazzat Kaltayeva and the editors who kindly gave their insightful comments and inputs on the previous version of this article. However, the views expressed in this article are mine and they have no responsibility for the content or possible mistakes. 2 Further details about the Shyrak organization can be found on their website www. shyrak.kz, accessed 3 December 2012.

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11 The complex role of non-governmental organizations in advancing the inclusion of children with disabilities in BosniaHerzegovina and Bulgaria Majda Bećirević and Monica Dowling

Following a long period of socio-political and economic transition away from state socialism, the number of non-governmental organizations in Bosnia and Herzegovina (hereafter BiH, reflecting the abbreviation in Bosnian language) and Bulgaria has risen significantly. In the current climate of international pressures and economic changes, NGOs in both countries are seeking to position themselves in what is an unsettled welfare climate. These NGOs have different functions ranging from advocacy, research and policy making to direct provision of social services. This chapter explores the role of various types of NGO in advancing the inclusion of disabled children based on doctoral research supported by UNICEF and 15 months of fieldwork conducted in BiH and Bulgaria (Bećirević 2010). BiH and Bulgaria were identified as suitable countries for this study on the basis of a number of similarities and differences between them. Similarities are a shared communist past, the prominence of the medical model in the treatment of disability and the influence of the Soviet school of thinking, for example in the practice of defectology. However, the countries are also at different stages of European Union accession, Bulgaria having joined in 2007 while BiH is a potential candidate country which so far has concluded several pre-accession steps, though with actual accession uncertain. The process of joining the EU has considerable potential to influence the situation for children with disabilities because it requires reform of policies and bringing the care of vulnerable groups closer to EU standards. In this study BiH and Bulgaria are used to provide information on the overall dynamics underway in South-East Europe (SEE). As the primary researcher Majda Bećirević who is Bosnian, conducted all interviews and group discussions in Bosnian in BiH. In Bulgaria, all interviews and discussions were conducted in English or Bulgarian with the support of a local interpreter and translator. Quotations from respondents are translated from the original language into English. According to Lendvai (2007: 28) South-East Europe has a crowded international policy space and has had multi-level social policy governance for over a

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decade. The aim of this chapter is to trace the various influences on disability, inclusion and childcare policies in BiH and Bulgaria. The first part of the chapter maps the diverse international influences on the development of social and inclusion policies, including the roles of the European Union, international organizations, international NGOs and policy experts. We then present contradictions and dilemmas that come with these diverse influences on policy. The final section suggests several ways forward in advancing the inclusion of disabled children and their families through more effective communication with all stakeholders and through policies that have a ‘bottom up’ rather than a ‘top down’ approach.

Socio-political context Both BiH and Bulgaria are located in Eastern Europe and until 1989 both countries were part of the communist bloc. However, there were major differences between the two countries. Yugoslavia (of which BiH was part) was seen as more ‘open’, practising socialism with a ‘human face’ while Bulgaria was strongly influenced by the Soviet authoritarian regime (Puljiz 2008). There were however broad similarities in regard to social policies. Institutional care was provided for small children and older people whilst a centralized and bureaucratic system existed for education and health care (Manning 2004). Policies did not focus on supporting families to raise children, but rather on removing children from the home in order to make parents fully available for work. This was especially the case for children with disabilities, but was also true for all children who came from families experiencing any form of hardship (Burke 1995; Manning 2004). The expectations of communist ideology were that socialism would bring about such prosperity that the numbers of needy citizens would decline. The existence of disabilities in the population was not publicized and the segregation of disabled people reduced awareness or interest in the elimination of barriers to inclusion in society (Vann and Šiška 2007). The influence of state socialism extended into all aspects of social and family life – including the ideology of childhood. Children were viewed as a valuable national asset, a safeguard for a future in which they would grow up to be responsible communist citizens, ready to take society forward. As a result of this philosophy, the state reserved the right to take over parenting and assume responsibility for the care of children (Todorova 2009; Stanciulescu 2010). Children with disabilities were largely out of sight during the period of state socialism due to both the inherent inflexibilities of the system and the influence of an ideology that stigmatized disability as incompatible with the future communist model. In BiH, children were predominantly educated in separate classes based within mainstream schools because special schooling was not well developed. In Bulgaria, as part of the adherence to the Soviet model of state socialism, special schools and special residential schools were extensive and the majority of children with disabilities were educated in these establishments (Tsokova and Bećirević 2009).

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The collapse of the socialist system and the socio-political transition that began in 1989 across Eastern Europe and the Soviet Union were not smooth processes for children. In the entire region children, to varying degrees, experienced wars, atrocities, poverty, violence, political uncertainty and complex socioeconomic crises. These transitions also led to increases in mortality rates, crime rates, homelessness, child abuse and exploitation, as well as the erosion of public services, which were freely available in socialist times (Zouev 1999). Parents, encouraged by an ideology that the state would ‘look after’ children, saw residential care as the only place where their children would receive at least one meal a day (UNICEF 2005, 2007, 2010). The current situation for disabled children in both countries is characterized by attempts to reform the system, moving from an overly medicalized and institutionalized bureaucracy to one focused on human rights and social inclusion. As such, the new developments reflect the promotion of community services and a user-oriented approach, a striking contrast to the bureaucratized structures and paternalistic values of the old states (Stubbs 2006). The rhetoric in both countries is one of social inclusion and children’s rights, but current government and NGO policies and practices do not necessarily correspond with inclusion philosophy (Bećirević and Dowling, forthcoming).

Diversity of EU influence Political, economic and social transitions in the early 1990s, the 1992–95 war in BiH and recent drives towards EU integration have exposed both Bulgaria and BiH to strong international influences (Deacon 2000; UNICEF 2003; Lendvai 2004; Deacon and Stubbs 2007; Saurugger and Radaelli 2008). Currently the greatest external pressure comes from the European Union (EU) and countries aspiring to join have to demonstrate progress in social reforms. The EU in recent years has increased its focus on issues of social exclusion/inclusion, which affects member and potential member states (Atkinson et al. 2005; UNDP 2008, 2009; European Communities 2010). The fieldwork for the research in BiH and Bulgaria was conducted soon after Bulgaria became a full member of the EU. The timing provided an opportunity to discuss the influence of the EU prior to accession with participants and to consider its immediate effects on Bulgarian disability politics. This chapter is based on the views of policy makers, activists and professionals directly involved with policy making or knowledgeable about policies. Informants came from ministries, international organizations (IOs), international NGOs (INGOs) and national and local NGOs. They were asked if they thought that joining or aspiring to join the EU affected policies in their respective countries. The responses from the two countries varied significantly. Bulgaria experienced very strong pressures prior to joining the EU to demonstrate quick progress with social policies. Before joining the EU, Bulgaria was required to reduce the numbers of children and young people in residential institutions and special schools, and to develop policies for the education and social inclusion of children and young

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people from ethnic minorities. One Bulgarian policy maker from an international organization commented: In the pre-accession period Bulgaria was heavily criticized by the EU monitoring report on the conditions of children and people with disabilities and especially children and people living in institutions. At that time we almost had no community services and family support service and there was quite a pressure on government to start creating different alternatives. According to several Bulgarian participants, EU funds were very difficult to administer. The EU’s style of working was new to government ministry staff and they were often unable to respond to calls for proposals or to access available funds. During the research it was found that even when funds were secured, they were sometimes not spent due to a lack of personnel and knowledge in a particular government agency. Another concern raised by the participants was that EU requirements on child protection were not a high priority: the whole pre accession was based on aligning the system with the European Union and since child protection is a domestic issue it’s not covered by the key areas and there weren’t many specific requirements; it’s not like labour law where you have very specific requirements, or internal affairs that require very specific legislative changes. Social policy is more open and considered a domestic issue. (Policy maker, international organization, Bulgaria) Furthermore, the majority of research participants mentioned that the EU inclusion agenda is frequently misinterpreted by professionals in special schools and residential institutions in Bulgaria. There were occasions when inclusion strategies caused disputes among different policy makers and professionals because of an urgent need to satisfy EU requirements. The participants talked about situations where some residential homes were closed temporarily just to meet EU demands, whilst children living in those institutions were transported in a rush, without notice or explanation, to another residential home. Such incidents correspond with concerns raised by Bulgarian disability activists (Panayotova 2009). According to policy makers and practitioners interviewed, staff in residential homes felt threatened by closures and the prospect of losing their jobs. For example, one school brought distressed children who had been told they would lose their home to protest in front of the Ministry of Social Policy in an attempt to stop the closure of this school (as recalled by a former Bulgarian policy maker). Nevertheless, Bulgarian government policy makers confirmed their political commitment to the policies of deinstitutionalisation, family support, inclusion and the inclusive education of children with disabilities. These official figures offered optimistic versions of the current developments unlike participants from NGOs, INGOs and parents. However, what happened on the ground in Bulgaria, especially in residential institutions, did not appear to mirror this rhetoric.

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In addition government policy makers have never challenged or acknowledged the fact that elements of the inclusion agenda are difficult to achieve in Bulgarian conditions and unreasonably requested by outside organizations such as the EU. The participants in BiH had different views and a more relaxed attitude towards EU polices than Bulgarian participants: ‘The European Union should be our goal, but within our capacities … we need to be given the opportunity to slowly build society according to EU standards, instead of just doing it for the sake of gaining membership’ (NGO worker, BiH). Although EU membership was a major political ambition, accession was not certain in the near future and so there was much less pressure to conform to EU directives compared to Bulgaria. Whether BiH will maintain the same approach closer to the actual accession or rush into ad hoc solutions to satisfy EU requirements remains to be seen.

International organizations: powerful pressures Although the European Union is the major driver of the inclusion agenda in BiH and Bulgaria (Government of Bosnia and Herzegovina 2009; Republic of Bulgaria 2010), economic and political pressures also come from other powerful agents. Supranational organizations and financial institutions such as the International Monetary Fund (IMF) and the World Bank have a powerful role in shaping welfare and social policies in both countries. In fact, the influence of major stakeholders such as the World Bank, tended to move policy making away from a unified European Union model because of the frequently competing influences of international agents in South-East Europe (Deacon et al. 1997; Deacon 2000). Numerous international organizations and international NGOs are involved in social policies and education, for example the Organization for Economic Cooperation and Development (OECD), the Organization for Security and Cooperation in Europe (OSCE), the United Nations Development Programme (UNDP), UNICEF and the Open Society Institute (formerly known as the Soros Foundation), to name but a few. The role of the World Bank and the IMF are different from other organizations and agencies since they facilitate reforms by giving large sums in loans and credits that are conditional on meeting specific criteria (Stubbs 2007). The World Bank has a declared aim of fighting poverty and emphasizes that disability and poverty go hand in hand (Braithwaite et al. 2008). It claims to support inclusive development where disabled people and the parents of disabled children are encouraged to contribute economically and to move from benefits to full employment (World Bank 2008, 2009). The extent to which this can be achieved in countries facing high levels of unemployment like BiH and Bulgaria is questionable, especially since attitudes and views towards disability, as well as material resources, are still at a level that does not permit these programmes to be implemented. Disabled children and their families will be pushed deeper into poverty and exclusion if policies only focus on labour productivity, excluding other means of

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support, like cash benefits. However, the World Bank champions a reduction of material support while criticizing the BiH government for spending too much on social protection cash transfers (World Bank 2009). In order to save stand-by arrangements with the IMF, BiH acquiesced to requests to impose restrictions and savings on pensions and disability benefits, among others. The World Bank requested reductions of 10 per cent in cash benefits before they approved large loans (Dnevni Avaz 2009). In 2010 the IMF exerted even stronger pressure on BiH to reduce benefits and disability allowances for 1992–95 war veterans. Even though these allowances were generous compared to allowances for people disabled for other reasons, this measure resulted in demonstrations and fierce political battles by army veterans (Reuters 2010). In Bulgaria, the World Bank achieved its goal of reducing cash benefits to a bare minimum (World Bank 2008), something to which the parents of children with disabilities interviewed strongly objected because they needed financial support to pay high care costs and there was still a lack of jobs.

Policy experts and NGOs Apart from supranational agencies, influence also came from various policy ‘experts’, as discussed by Deacon et al. (2007) who argue that these figures have an important but often unrecognized place in shaping social policies. These policy ‘experts’ were not interviewed for the research, but their role was raised by research participants and it appeared that international consultants and experts are established as legitimate policy-making actors in the region: There were many consultants working here last year in the social arena, the World Bank as well; we had a big program on child welfare reform and it was co-funded by the EU, but the Japanese government as well and it was meant to bring in good examples … Actually the whole strategy was developed by external experts who worked with the government. (Policy maker, international organization, Bulgaria) By promoting social inclusion, international and national NGOs in both countries have developed an influential role in raising awareness about the human rights of persons with disabilities, the provision of community services and the participatory approach in policy making. There were, however, significant differences in advancing social inclusion between international NGOs, international organizations such as UNICEF, OSCE, OECD and Handicap International, and local NGOs. International organizations had greater power and resources and were more prominent in influencing government policies than local and national NGOs. They participated in popular round table discussions and they commonly led the development of plans and actions. INGOs were more focused on awareness raising, policy making and research, keeping away from direct service provision unless it was through partnership (funding and monitoring) with local and national NGOs. In addition they involved policy ‘experts’ who conducted research and

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published policy reports, which were used by governments as needs assessments. National disability NGOs, on the other hand, saw their role primarily as providers of services, with few engaged in disability activism (cf. Holland 2008 on the activities of disability organizations in Eastern Europe). They often took part in policy making but had much less influence than their international counterparts or international organizations. The tension between international and local agents was also shaped by an imbalance in financial and technical resources and in situations where international experts and NGO workers imposed their ideas without regard for or willingness to support local knowledge. However, there were also collaborative occasions when large international organizations provided financing to support national and local NGOs. For example, a recent collaborative research project (January 2012) with parents and parent organizations in BiH and Croatia was funded by the Open Society. The project included workshops with local and international NGOs, government officials, parents and professionals in order to examine and discuss the research findings (Bećirević and Dowling 2012). Further funding from the Open Society will enable the development of ‘round table’ initiatives in Bosnia and Croatia with all key participants to highlight and try to implement the main recommendations.

The influence of disability and children’s rights agendas The 2006 UN Convention on the Rights of Persons with Disabilities (UNCRPD) has been gaining momentum around the world with many countries signing and ratifying the document, which is seen as a significant instrument in advancing inclusion. However, in 2008 when this research was first conducted, the Convention did not have a powerful influence in BiH and Bulgaria and was rarely mentioned by participants as an instrument that had any relevance to national policies. Still, the disability rights activist in BiH who was present at the United Nations when the Convention was discussed said: I had an opportunity to see how much the BiH delegation advocated for acceptance of the Convention, especially the act concerning disabled children … however our country still has not signed let alone ratified the Convention … and that is maybe the biggest problem. To be honest, I do not know whether the country is ready for it. The Standard Rules were adopted in 2003, but they are not obligatory. The Convention is indeed obligatory and that is probably the reason why it still has not been signed. (Disability activist, NGO, BiH) By 2010 the Convention had been signed by both BiH and Bulgaria and by March 2012 both countries had ratified the Convention. However, these actions came about only after strong pressure from disabled peoples’ organizations and the key issue will be how the Convention is applied in both countries. With the implementation of the Convention still unclear, the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities

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(1993) were highlighted as the instrument that has most advanced the position of disabled people in BiH. Organizations of people with disabilities in BiH actively promoted these rules and in September 2003 they were adopted by the Council of Ministers of BiH as a document that needed to be used as a basis in policy making (Cehovic and Zahirovic 2006). The UN Convention on the Rights of the Child (1989) was also mentioned, especially by IOs and INGOs, as a good basis for advancing inclusion. Both BiH and Bulgaria have signed and ratified the UN Convention on the Rights of the Child (1989) but the rights of children, especially disabled children, are too frequently violated. This is particularly the case with Article 12 on child participation, especially if the state is considering placing a child in an institution: Commissions in local social services decide whether a child will attend a mainstream school or go to a residential special school or an institution. In this situation, the child is not really asked. The UN Disability Convention states that the opinion of the child will be considered in decisions regarding that child. I think it was in fact the suggestion of BiH to incorporate that article, but this is surely about children whose mental abilities are preserved. We cannot expect that a child with mental retardation can decide where and how he/she will live and go to school. (Disability activist, BiH) This quote highlights that the principle that ‘rights apply to all children’ seems to be forgotten when it comes to disabled children, especially children with intellectual disabilities. Furthermore there are misconceptions in applications of these rights. Professionals, even disability activists, expressed opinions that could be interpreted as acceptance that the fulfilment of human rights depends on social conditions, good will and the nature of the impairment. Since rights are meant to be unconditional one would think that these violations would be recognized by the UN Committee that monitors rights implementation, which would then instigate remedial actions. However, one Bulgarian activist talked about how this was not the case in practice and how organizations competed and misinformed one another when it came to UN Committee hearings. The usual procedure at UN Committee hearings is that countries present an official state report and an alternative report. The alternative report is usually compiled and finalized by an INGO, which often takes the lead by its own accord. Information can be rather selective or may not provide a sufficiently nuanced picture of developments in particular areas, such as disability. According to this research participant, some NGOs ally themselves closely with official agendas and are reluctant to openly criticize policies and practices due to the funding provided by government agencies. Certain lobbyists within Bulgaria thus want to present a particular picture and they try to exclude different findings, especially groups that are very critical of the situation in relation to children’s rights. In addition, even though children’s rights are a key part of the UN agenda, the philosophy and legacies of formerly socialist countries do not necessarily recognize such

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rights and some NGOs are still steeped in these traditions. The work of NGOs, INGOs and IOs therefore does bring new ideas and opportunities for inclusion, but the social inclusion field is also loaded with tensions, dilemmas and contradictions.

The search for a welfare model Even though international agencies and the European Union have the same broad inclusion agenda for the region (UNICEF 2007; European Commission 2009; OECD 2009), implementation strategies vary significantly. For example, the parents of children with disabilities expressed the need for financial support in overcoming exclusion during interviews. However policy makers in BiH and Bulgaria expressed different views. In Bosnia and Herzegovina, there was agreement on increasing financial assistance to families as specified in the Amendment to the Law on Social Care (Government of BiH, 2006). Bulgarian policy makers however, argued against this approach, claiming that increasing financial assistance would create dependency and foster poor productivity. Their policy model was to provide community services for children and employment for parents. This approach appeared to emerge from the pressing need to reduce institutionalization and also from exposure to closer scrutiny by the EU, IMF and the World Bank (Panayotova 2009). There are also unresolved issues in how changing welfare models reflect an inclusion agenda. Wagener (2002) argues that the state socialist welfare state was very different from the European (EU) model and that the countries of Central and Eastern Europe need to transform their political and economic systems, including catching up with productivity levels. Under state socialism, welfare was a worker’s privilege rather than a citizen’s right. In daily life, of course, the difference was minimal since almost everybody was a worker. Wagener argues that the convergence of social conditions will be the outcome of economic convergence and cannot be its precondition. Hence, candidate countries need to be free to choose welfare regimes that they think are appropriate for their stage of development and their welfare culture. However, achieving this goal might prove challenging due to international pressures and loan conditionality. Naomi Klein (2007) and Paul Krugman (2012) have strongly criticized the World Bank’s neo-liberal ideology, arguing that it destroys indigenous capacities and exacerbates poverty. In relation to disability, the Bulgarian welfare system is now more oriented towards labour productivity and community services, avoiding cash benefits. Bosnia’s social policy system was exposed to a complex mix of humanitarian and security interventions for many years, which directly affected the processes of social and political change (Deacon and Stubbs 2007). The transition from socialism in BiH was different from that in other East European countries since BiH was not exposed to strong neoliberal ‘shock therapy’ economics. Instead, a humanitarian aid approach dominated international influence. The effects of this influence are still felt and the needs of disabled people and children are often met

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through the work of aid organizations. The image of humanitarian action is not easy to shake off and NGOs and international organizations are still often seen as vehicles for delivering basic support rather than as agents of political action and change (Holland 2008). This is a difficult tension to resolve because humanitarian aid provides cash and assistance to vulnerable families, including those with disabled members, but relieves the state of responsibility for well-being and undermines a rights-based approach. Despite reservations over its long-term usefulness, it is important to note that the humanitarian approach in BiH possibly acts as a buffer to the neoliberal policy agenda promoted by the World Bank in the region. The World Bank advocates the privatization of health insurance and the promotion of productivity above social safety, which unfavourably affects disabled children and their families. This approach contradicts the EU’s social solidarity model (Deacon et al. 2007), which has direct implications for agendas around inclusion. One Bulgarian participant highlighted the contradiction between the inclusion rhetoric and the reduction in financial and human resources for social services. Institutions like social workers, schools and community centres need to be strengthened to cater for the diversity of the population and this will require resources. Klein (2007) argues for a mixed economy where developing nations are not coerced by the developed Western nations who run the IMF and World Bank, but are allowed to choose their economic destiny. However, developing nations as well as many countries in SouthEast Europe are tied to economic plans driven by globalized capital due to their pressing needs for funding, placing tight constraints on their welfare and inclusion policies. Ultimately, both Bulgaria and BiH are developing a mixed economy of welfare, moving away from the bureaucratic collectivism of welfare and state paternalism that dominated Eastern Europe (Deacon 1992). In addition, policy makers in both countries share a popular political rhetoric that policies need to be adjusted to a ‘European social model’. However, they fail to acknowledge that there is neither a clear European model nor a common understanding of the characteristics of welfare in current EU member states (Deacon and Stubbs 2007). It must not be forgotten that economic indicators in Bosnia-Herzegovina and Bulgaria are much poorer than those of Germany, the United Kingdom, Italy or France, which inevitably affects welfare development by indicating that the social model cannot be the same across Europe.

Policy transfer, translation or projects? Tensions and dilemmas around the social inclusion agenda have arisen due to numerous unsustainable, as well as unhelpful and contradictory, strategies among different stakeholders. Policy making in both Bulgaria and BiH was influenced by the actions of foreign NGOs, which often looked for quick solutions from developed countries of the EU. It appeared that in Bulgaria, the UK was influential in shaping new polices as commented on by a policy maker from an international organization:

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Majda Bećirević and Monica Dowling [I]n the UK you can do something as a pilot model and if it proves successful it will continue; in Bulgaria it doesn’t matter if it is successful or not you have to change it in legislation. The model can be very good, but legislation takes time and then you’ve lost it.

The presence of international agencies and foreign consultants in South-East Europe could be seen as encouraging policy transfer from abroad (Deacon et al. 2007). However, Lendvai and Stubbs (2007) put forward the idea that the process of ‘policy translation’ rather than ‘policy transfer’ is more appropriate to describe policy processes in the region. Policy translation is a more fluid and dynamic process where policies are not copied in their original form, but are constituted by multiple actors, networks and policy brokers. It is not always clear whether policy transition takes into consideration the fit with local conditions and sustainability. Policy makers were asked how they constructed policies and whilst there were strong indications that they looked for examples from abroad, straightforward transfer does not happen: In policy making we usually look for examples from abroad. However, this usually shows that they cannot be applied directly here. I don’t like the fact that we always try to translate policy making initiatives either from the region or from the West. We need to recognize that Sweden, Norway and the UK have much better standards when it comes to policy and practice so we cannot really copy them exactly. (NGO staff member and policy maker, BiH) As discussed earlier, disability policies are increasingly being developed with the participation of disability activists, who are sometimes disabled people themselves or the parents of disabled children. However, their opinions are not always respected, as reported by mothers from parents’ organizations. This was confirmed by a Bulgarian policy maker from an INGO when asked if parents participate in policy making: ‘this is supposed to happen. In practice it isn’t really the case’. In commenting on the currently popular trend of creating strategies and action plans, a government policy maker in BiH said: ‘Those strategies are often the outcome of individual projects and are not based on an assessment of the actual situation.’ This was also the case in Bulgaria, where parents and informants from INGOs and NGOs stressed that community needs were not assessed and researched. This approach resulted in a situation where services in some towns have no users, whilst there is great demand but insufficient day centres in the capital city of Sofia. Furthermore, Bulgarian parents and NGO workers claimed that research could establish what clients need and help to create diverse services instead of offering the same to everybody. Domestic policy makers are unsure how to harmonize national legislation with EU laws and regulations (cf. Young and Quinn 2002). One policy maker said that these processes are very unclear to domestic stakeholders, who look for similar laws and regulations in other countries but find that these are not readily available.

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What usually happens is that international agencies place strong pressure on government ministries, bring in their experts, engage NGOs and provide an injection of funds for solutions to be accepted. This results in a situation where policies or strategies are not embraced by all stakeholders, with some refusing to take these new developments on board. In addition participants in both South-East European countries argued that the resulting policy documents are loaded with messages about children’s rights, equality and non-discrimination, but lack implementation and enforcement mechanisms, as illustrated by the following comment by a Bulgarian policy maker from an international organization: In Bulgaria, a policy or strategy has to be codified in legislation in order to be implemented. I did an assessment of all policies concerning children and their rights and there were 22 of them; there was a strategy for children with disability, for street children, for children in institutions, I mean everything that you can think of. None of them had an allocated budget and frankly, very few of the measures were really implemented. Several practitioners claimed that the parents of disabled children advocated for their own individual children instead of using their experience to advocate for all disabled children. These claims are however contradicted by examples of parents’ activism in both countries. Parent organizations were highly praised by parents and sometimes seen as the only place where parents and children could get much needed support. In fact, parent organizations are becoming increasingly recognized by professionals themselves, as noted by a defectologist (a socialist-era term for ‘special educator’) in BiH: You should visit parent associations here; they are very transparent, they are doing a great job, I can only congratulate them … After all they are parents of those children. Imagine what a defeat that is for our profession, when a parent association shows better quality in certain jobs than defectologists do. That is like some kind of deterioration of defectology. (Defectologist from a special school, BiH) The presence of children’s rights organizations and their involvement in policy making is an opportunity to strengthen a children’s rights approach to inclusion. It offers a way to move the policy agenda and the way policies are developed from a ‘protective’ understanding of childhood to one in which children are given participatory rights (Lister 2007). Overall our research indicated that policy making did not reflect an inclusive approach and that children were not asked what they thought about policies and projects that are allegedly developed for their benefit. Such results demonstrate an important contradiction within social exclusion policy in that it often excludes the most marginalized people and groups (Warren and Boxall 2009). This is especially the case for children who have intellectual impairments or those who do not use speech to communicate.

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NGOs and inclusion In contrast to countries where political and social conditions allow disabled peoples’ organizations to have a major impact on disability politics and policies (Barnes and Mercer 2001; Oliver 2004), there are numerous complex issues around the work of NGOs in BiH and Bulgaria. Even though NGOs occupy an important place in advancing inclusion, bringing in new practices and generating social change, they face challenges and often have to make compromises. Their work is frequently divided between struggling to keep their organization going, raising their profiles and providing services. Several participants in this study expressed doubt that NGOs were able to bring about social change and advance inclusion. In Bulgaria, this was because most of the national and local NGOs were established by people who used to work in the former state socialist system and were responsible for the exclusion of disabled children. They understood why the welfare system needed to be changed, but their lack of professional capability and knowledge was evident and has also been mentioned in other literature (see Maglajlic-Holicek and Residagic 2007). There have also been concerns over financial transparency (DFID 2005). These issues were reflected in fieldwork interviews. For example, a government policy maker remarked: In BiH we have an ‘aristocracy’ of NGOs where around ten of them have a monopoly and they do not share information. When we cooperate, the partners are individuals and not organisations … most of the resources are used on their expenses and travel. There are no mechanisms through which the government can give support to disabled individuals through NGOs. These problems are more acute in countries burdened by poverty and inexperienced in civil society activity. Key issues that were identified in the interviews included: following donor agendas rather than the expressed needs of communities; the development of short-term ‘project cultures’; an emphasis on building organizations instead of addressing social goals; and distancing NGOs from grassroots activism (cf. Stubbs 2006). The major growth in the number of NGOs in South-East Europe in the past ten years has undoubtedly been related to the actions of international donors. According to Maglajlic-Holicek and Residagic (2007), NGOs now resemble a private business sector focused on absorbing donors’ funds instead of being truly civil organizations. Furthermore, evaluations of projects are frequently conducted without user participation (Maglajlic and Hodzic 2005). Problems with monitoring the work of NGOs were mentioned in both countries; as one Bosnian participant commented: ‘[N]o-one is able now to monitor them to see what kind of quality they provide, what kind of capacities their services have.’ With national and international NGOs becoming official and unofficial providers of services, tensions about the quality of services provided have emerged. In BiH, professionals from government institutions expressed suspicions about the way some NGOs work and the services they provide, especially around independent living for

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disabled young people. In Bulgaria, however, NGOs were critical of the quality of services provided by government agencies: The quality of the services goes down after the municipality assumes responsibility. Unfortunately, the situation is that when the municipality starts to govern these NGO activities, they install staff that are not so well qualified, but they put these people in because of their personal relationships. (NGO, Bulgaria) INGOs sometimes provide desired community services such as playgroups, toy libraries, preschool services and mobility aids, but only temporarily, which creates a false impression of true improvement and change. Furthermore, different NGOs and donors work to conflicting agendas, sometimes not clearly thought through. The following quote illustrates this point: British, French and German NGOs donated really enormous amounts of money to residential institutions … and now after several years they see that everything is stolen or hidden and none of the toys or equipment they provided is used … because there are no professionals, but they never, never think about the people … I tell them you should pay salaries, you should train people and never buy clothes, shoes, but that is the donor mentality, they continue to do that. (INGO worker, Bulgaria) The problem of corruption and nepotism was raised by several participants in Bulgaria. They gave examples of the misuse of donations by people who run homes for children and amongst officials who employ staff in child-care centres and services on the basis of personal connections rather than professional experience and knowledge. Government funds to national and local NGOs, as expressed by both BiH and Bulgarian participants, are not always allocated in line with NGO capacities, but affected by personal lobbying and good or bad relationships with particular ministers.

Ways forward This study has identified a patchwork of frequently contradictory government, IO, INGO, national and local NGO involvement in disability policies and practices. These contradictions sabotage clear social inclusion plans such that some stakeholders invest in improving residential care whilst others have closed as many residential care facilities as possible. Some policy makers advocate the reduction of financial assistance to parents whilst others support an increase to meet the aim of advancing inclusion. The evidence suggests that the resources for global inclusion and human rights agendas that come with international agents are not sufficiently utilized in BiH and Bulgaria. Foreign players exert power over domestic policy makers, but this

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dominance is not always productive and domestic stakeholders are apprehensive about criticizing it. Certain actions are therefore officially endorsed, but simply passively resisted (Deacon et al. 2007). How and why conflicts rather than collaboration emerges between governments, local NGOs and international NGOs needs to be addressed and the issues clearly communicated between all parties. Once a window for debate has emerged, then recommendations and solutions can be developed. Government and non-governmental organizations need to coordinate their efforts towards inclusion so that they can influence donor agendas and avoid programmes and projects that do not fulfil inclusion principles. Coordination could be improved if policies were developed systematically and evaluated regularly with service user participation, something that is not currently occurring (Maglajlic and Hodzic 2005; Bećirević and Dowling 2012). Competing and sometimes contradictory inclusion strategies can be overcome if inclusion is discussed as a national policy agenda, addressing all opportunities and constraints in the current context. A key element of promoting inclusion is changing public stereotypes about the way disabled people are portrayed in the media and discriminated against in public. The language around disability and inclusion is very much scrutinized in English-language disability literature (Barnes 1992; Oliver and Barnes 1998), but the same scrutiny was not encountered in BiH and Bulgaria. Language needs to be given additional attention because current policy transfers and translations are tied to particular language and discourses. Concepts such as inclusion can be misunderstood and lost in translation, requiring culturally appropriate terminology and understandings of concepts to be developed. International NGOs tend to blame cultural influences when a project fails to achieve sustainability or when initiatives do not take off in a non-Western country (Burr 2004), a problem recognized in this study too. International organizations need to change their approach in BiH and Bulgaria and start taking existing practice more seriously, instead of what Burr (2004: 156) describes as ‘presenting themselves as rescuers and sole defenders of children’s rights’. According to Deacon et al. (2007: 238) ‘the specific ways in which IOs relate to local players matter. They mould local knowledge and expertise, strengthening some think tanks and scholars and not others. They co-opt scholars into IOs, dissolving potential criticisms’. Certainly the fieldwork found that national professionals were often excluded if they did not speak English and did not conform to a particular agenda. Working with IOs and INGOs can be a negative practice if it deepens the gap between international and national agendas and creates the existence of two opposing groups. It can also lessen the opportunity for the culturally appropriate translation of policies and models. It would be beneficial to overcome this practice and combine the first-hand experience of BiH and Bulgarian social workers, teachers and doctors with new developments and international best practices available through international organizations. This chapter has considered a number of factors and players that contribute to changes in policies, practices and the overall disability agenda in BiH and

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Bulgaria. There is undoubtedly no lack of agencies, organizations and diverse influences to promote inclusion. The international human rights agenda is slowly creating a better atmosphere for the rights of disabled children, as are EU accession and the actions of international agencies and national NGOs. However, the strong presence of diverse actors in disability policy making has both positive and negative effects. The current period of change and diverse influences could be an opportunity for real discussion and creativity that avoids the slowness of developments abroad and uses overseas experiences to advance inclusion in ways that are sensitive to the differing needs of the populations in South-Eastern Europe.

References Atkinson, A., Cantillon, B., Marlier, E. and Nolan, B. (2005) Taking Forward the EU Social Inclusion Proces, Report 11-05-0180-E. Luxembourg: Council of the European Union. Barnes, C. (1992) Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People. Halifax: Ryburn Publishing. Barnes, C. and Mercer, G. (2001) ‘The politics of disability and the struggle for change’, in L. Barton (ed.) Disability, Politics and the Struggle for Change. London: David Fulton Publishers, pp. 11–23. Bećirević, M. (2010) ‘Inclusion or illusion? Policies and practices for children with disabilities and their families in Bosnia and Herzegovina and Bulgaria’, Unpublished PhD thesis, Milton Keynes, UK: The Open University. Bećirević, M. and Dowling, M. (2012) Parents’ Participation in the Social Inclusion of Children with Disabilities in Bosnia Herzegovina (BiH) and Croatia. London: Open Society Foundation. Bećirević, M. and Dowling, M. (forthcoming) ‘Inclusion or illusion? Institutional care for children with disabilities in Bosnia Herzegovina (BiH) and Bulgaria’, submitted to British Journal of Social Work. Braithwaite, J., Carroll, R., Mont, D. and Peffley, K. (2008) ‘Disability and development in the World Bank FY2000–2007’, Social Protection discussion paper no. 0808, Washington D.C.: World Bank. Burke, M. (1995) ‘Child institutionalisation and child protection in Central and Eastern Europe’, Innocenti Occasional Papers, Economic Policy Series 52. Florence: International Child Development Center. Burr, R. (2004) ‘Children’s rights: international policy and lived practice’, in M.J. Kehily (ed.) An Introduction to Childhood Studies. Buckingham: Open University Press. Cehovic, A. and Zahirovic, S. (2006) Jedna Strana Medalje’– Izvjestaj istrazivanja: Pregled najboljih praksi u oblasiti invalidnosti u Bosni i Hercegovini. Sarajevo: IBHI. Deacon, B. (1992) ‘East European welfare: Past, present and future in comparative context’, in B. Deacon (ed.) The New Eastern Europe – Social Policy Past, Present and Future. London: Sage, ch.1. Deacon, B. (2000) ‘Eastern European welfare states: the impact of the politics of globalisation’, Journal of European Social Policy, 10(2): 146–61. Deacon, B. and Stubbs, P. (eds) (2007) Social Policy and International Interventions in South East Europe. Cheltenham: Edward Elgar. Deacon, B., Hulse, M. and Stubbs, P. (1997) Global Social Policy: International Organizations and the Future of Welfare. London: Sage.

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Deacon, B., Lendvai, N. and Stubbs, P. (2007) ‘Conclusions’, in B. Deacon and P. Stubbs (eds) Social Policy and International Interventions in South East Europe. Cheltenham: Edward Elgar, ch. 12. DFID (Department for International Development) (2005) Zaposljavanje, pruzanje socijalnih usluga i nevladin sektor. Sarajevo: Nezavisni biro za humanitarna pitanja. Dnevni Avaz (2009) Tuesday 1 December 2009. Year XV, No 5111. Sarajevo: Avaz-Roto Press. European Commission (2009) Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care. Brussels: Directorate-General for Employment, Social Affairs and Equal Opportunities. European Communities (2010) 2010 European Year for Combating Poverty and Social Exclusion. Brussels: European Commission, Employment, Social Affairs and Equal Opportunities. Government of Bosnia and Herzegovina (2006) ‘Amendment to the Law of Social Care 2006’, Official Gazette, No 21. Government of Bosnia and Herzegovina (2009) Strategy for Social Inclusion in Bosnia and Herzegovina, Directorate for Economic Planning, Council of Ministers, Bosnia and Herzegovina. Holland, D. (2008) ‘The current status of disability activism and non-governmental organizations in post-communist Europe: preliminary findings based on reports from the field’, Disability & Society, 23(6): 543–55. Klein, N. (2007) The Shock Doctrine: The Rise of Disaster Capitalism. London: Penguin Books. Krugman, P. (2012) End this Depression Now! London: W. W. Norton & Co. Lendvai, N. (2004) ‘The weakest link? EU accession and enlargement: dialoguing EU and post-communist social policy’, Journal of European Social Policy, 14(3): 319–333. Lendvai, N. (2007) ‘Europeanization of social policy? Prospects and challenges for South East Europe’, in B. Deacon and P. Stubbs (eds) Social Policy and International Interventions in South East Europe. Cheltenham: Edward Elgar, ch. 2. Lendvai, N. and Stubbs, P. (2007) ‘Policies as translation: Situating trans-national social policies’, in S.M. Hodgson and Z. Irving (eds) Policy Reconsidered: Meanings, Politics and Practices. Bristol: Policy Press, pp. 173–89. Lister, R. (2007) ‘Investing in children and childhood: A new welfare policy paradigm and its implications’, in A. Leira and C. Saraceno (eds) Childhood: Changing Contexts. Comparative Social Research. Volume 25. Bingley: Emerald Group Publishing, pp. 383–408. Maglajlic, R. A. and Hodzic, E. (2005) Politicka participacija. Postoji li puna participacija gradjana u javnom zivotu? Sarajevo: Open Society Fund. Maglajlic-Holicek, R. A. Residagic, E. K. (2007) ‘Bosnia and Herzegovina’, in B. Deacon and P. Stubbs (eds) Social Policy and International Interventions in South East Europe. Cheltenham: Edward Elgar, ch. 8. Manning, N. (2004) ‘Diversity and change in pre-accession Central and Eastern Europe since 1989’, Journal of European Social Policy, 14(3): 211–32. OECD (2009) Students with Disabilities, Learning Difficulties and Disadvantages in the Baltic States, South Eastern Europe and Malta: Educational Policies and Indicators. Paris: OECD and European Commission. Oliver, M. (2004) ‘The Social Model in Action: If I had a hammer’, in C. Barnes and G. Mercer (eds) Implementing the Social Model of Disability: Theory and Research. Leeds: The Disability Press, ch.2.

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Oliver, M. and Barnes, C. (1998) Disabled People and Social Policy: From Exclusion to Inclusion. Essex: Addison Wesley Longman. Panayotova, K. (2009) ‘Country report on the implementation of policies supporting independent living for disabled people: Country Bulgaria’, University of Leeds: Academic Network of European Disability Experts (ANED). Puljiz, V. (2008) ‘Social policy of the post Yugoslav countries: Legacy, transition problems, perspectives’, in Reframing Social Policy: Actors, Dimensions and Reforms. Skopje: Institute of Social Work and Social Policy, Skopje University, and Friedrich Ebert Stiftung, ch.4. Republic of Bulgaria (2010) National Program: European Year for Combating Poverty and Social Exclusion. Sofia: Ministry of Labor and Social Policy of the Republic of Bulgaria. Reuters (2010) ‘Police battle Bosnians protesting IMF-imposed cuts’, Reuters Online, 21 April. Available at: http://www.reuters.com/article/idUSLDE63K213 (accessed 4 December 2012). Saurugger, S. and Radaelli, C. M. (2008) ‘The Europeanization of public policies: Introduction’, Journal of Comparative Policy Analysis, 10(3): 213–19. Stanciulescu, E. (2010) ‘Children and childhood in Romanian society and social research: ideological and market biases and some notable contributions’, Current Sociology, 58(2): 309–34. Stubbs, P. (2006) ‘Civil society or ubleha? Reflections on flexible concepts, meta-NGOs and new social energy in the post-Yugoslav space’, in H. Rill, T. Smidling and A. Bitoljanu (eds) 20 Pieces of Encouragement for Awakening and Change. Belgrade: Center for Non-Violent Action, pp. 215–28. Available at: http://www.nenasilje.org/ publikacije/pdf/20poticaja/20pieces-stubbs.pdf (accessed 5 June 2009). Stubbs, P. (2007) ‘International organizations and child care system reform in South East Europe’, Final report for UNICEF, Institute of Economics, Zagreb. Todorova, V. (2009) ‘Children’s rights in Bulgaria after the end of communism’, The International Journal of Children’s Rights, 17(4): 623–46. Tsokova, D. and Bećirević, M. (2009) ‘Inclusive education in Bulgaria and Bosnia and Herzegovina: policy and practice’, European Journal of Special Needs Education, 24(4): 393–406. UNDP (2008) Pension Reform and Social Protection Systems in Bosnia and Herzegovina. Sarajevo: UNDP. UNDP (2009) Human Development Report: Overcoming Barriers, Human Mobility and Development. Basingstoke: Palgrave Macmillan. UNICEF (2003) Legal Aspects of Social Protection for Children in Bosnia and Herzegovina. Sarajevo: UNICEF UNICEF (2005) Children and Disability in Transition in CEE/CIS and Baltic States. Florence: Innocenti Research Centre. UNICEF (2007) ‘Promoting the rights of children with disability’, Innocenti Digest, No 13., Florence: Innocenti Research Centre. UNICEF (2010) Situation Analysis: Inclusive Education in CEE/CIS. Bratislava: UNICEF CEE/CIS Regional Office. United Nations (1989) Convention on the Rights of the Child. New York: United Nations. United Nations (2006) Convention on the Rights of Persons with Disabilities. New York: United Nations. Vann, B. and Šiška, J. (2007) ‘From “cage beds” to inclusion: the long road for individuals with intellectual disability in the Czech Republic’, Disability & Society, 21(5): 425–39.

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Wagener, H. (2002) ‘The welfare state in transition economies and accession to the EU’, West European Politics, 25(2): 152–74. Warren, L. and Boxall, K. (2009) ‘Service users in and out of the academy: Collusion in exclusion?’, Social Work Education, 28(3): 281–97. World Bank (2008) ‘Project appraisal document on a proposed loan to the republic of Bulgaria for a social inclusion project’, Report No: 38604-BG, Human Development Unit, Europe and Central Asia Region. Washington D.C.: World Bank. World Bank (2009) ‘Social safety nets and employment support project information document (PID) project stage’, Report No AB4773. Washington D.C.: World Bank. Young, E. and Quinn, L. (2002) Writing Effective Public Policy Papers – A Guide for Policy Advisers in Central and Eastern Europe. Budapest: Open Society Institute. Zouev, A. (ed.) (1999) Generation in Jeopardy: Children in Central and Eastern Europe and the Former Soviet Union. New York: UNICEF and M.E. Sharpe, Inc.

12 Lost in transition Missed opportunities for reforming disabled children’s education in Armenia, Azerbaijan and Georgia Victoria Shmidt As in other parts of the former Soviet Union, the three countries of the Caucasus region (Armenia, Azerbaijan and Georgia) have introduced inclusive education with varying degrees of political, professional and civil society support. However, the sustainable transformation of education away from deficit-oriented approaches and Soviet institutionalization has not yet been achieved. In this chapter, I argue that factors differentiating the education systems in each Caucasus country are often neglected due to over-emphasis on the shared socialist past and the similar socio-economic upheavals that accompanied the ‘transition’ away from state socialism. I therefore question whether educational reform for disabled children in these countries should follow a single model or be more sensitive to specific circumstances in individual countries. The task of transforming education for disabled children in the Caucasus region is complicated by the lack of consensus among stakeholders around the world about the underlying goals of education (cf. Tickly and Barrett 2011). While some claim that literacy is important to develop skills and human capital among disabled and non-disabled children (Erickson 2006), others argue that traditional forms of education – notably residential care – must be reduced because they violate children’s rights (UNICEF 2005: 17). Legal regulations introduced in the post-Soviet years generally proclaim the right of disabled children to education in the Caucasus countries, but procedures for deciding how to educate a child and the responsibility of services to provide high standards of care and education have not been established. In exploring the socio-political realities that shape disabled children’s education in Armenia, Azerbaijan and Georgia, I first offer a theoretical framework that draws on disability studies and postmodern conceptualizations of childhood. The second part of this chapter presents Soviet legacies and recent trends in intervention with disabled children in the Caucasus region. The last part discusses education for children with mental and physical disabilities in each Caucasus country and argues that their specifics make a ‘multi-track’ or ‘multi-option’ model most useful for improving social participation and access to services. Throughout the chapter I draw on documentary analysis, interview excerpts and survey data from the Caucasus area.

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Education for disabled children: inclusive simplicity or integrative diversity? The Western history of education for disabled children is shaped by two types of school and the connections between them: ‘special’ (within separate institutions) and ‘inclusive’ (within mainstream schools). The relationship between special and inclusive education can be regarded in different ways from mutual opposition to the view that these trajectories can be complementary. Full inclusion and education in residential settings remain extreme points of the spectrum of strategies for educating disabled children: various forms of semi-inclusion, for example part-time learning in mainstream schools in combination with individual lessons or special classes in mainstream schools, exist in addition to a range of special education types. If properly designed and resourced, this diversity can deliver high-quality and effective education in line with children’s particular needs (Tisdall 2006: 75). Unfortunately, though, discussions about inclusion or special education are often too simplistic and polarized to provide a useful basis for shaping disabled children’s lives in such distinctive contexts as Armenia, Azerbaijan and Georgia. Special education as a system of institutions and practices arose in Western Europe during the late nineteenth century (Winzer 1992: 21) in line with the expansion of school education and the institutionalization of child protection. Starting in the late 1970s, special education (especially residential care) became strongly associated with an outdated medical approach to disability while inclusive education was linked to a more progressive ‘social model’ of disability (Priestley 2003: 7). The push to fully include disabled children in mainstream schools became increasingly widespread due to bottom-up activism and political change. Interestingly, the start of such reforms in the former Soviet Union coincided with the emergence of criticisms of full inclusion in Western countries (e.g. Kauffmann and Hallahan 1995). Nonetheless, full inclusion was viewed in the region as the best option for disabled children since it fitted with new political values about democratic development. In contrast, special education was labelled as Soviet, uncaring and out-of-date (Priestley 2003: 43). As in countries with longer traditions of educating disabled and non-disabled children together (cf. Croll and Moses 2000), an inconsistent approach towards full inclusion emerged in post-socialist countries. On the one hand, inclusive education was viewed as a first step in upgrading societal conditions and jettisoning Soviet ideology. However, such utopian viewpoints on inclusion were not accompanied by concrete measures to place disabled children in mainstream school spaces (ibid.: 10). Debates in developed countries about the merits of special and inclusive education were influenced by several factors during the late 1990s: changing constructions and the increasing acceptance of disability in public discourse (Pickering and Busse 2010); new conceptualizations of childhood and child development among researchers and parents (Honig 1999; Kehily 2009); and questions over the fundamental goals of education (Andreotti 2011). Approaches

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to disability, childhood and education were shaped by the increasing application of postmodernism and social constructionism in caring professions to emphasize diversity, pluralism and social participation in solving social issues. Debates on the appropriate balance between globalization and indigenous knowledge also informed moves to create ‘local’ solutions to social issues (Gray 2005). Critiques of ‘hegemonic’ Western approaches suggested that they were rooted in particular socio-cultural values and constellations of policy factors that were only applicable in a limited number of contexts (Tomlinson 1982: 27). Official approaches to childhood, education and disability have historically served the interest of the authorities. The commodification of children associated with industrialization thus promoted state regulation of the labour market and fertility (Gittins 2009) while the division between mainstream education for ‘normal’ children and special schools for ‘abnormal’ children functioned as a means of social control (Winzer 1992: 316–17). Concurrently, the medical model of treatment for people labelled as ‘disabled’ established a widespread system of norms and prescriptions in order to control them and legitimize their segregation as supposedly in their best interest (Grue 2011: 536). Moves to limit the power of state institutions required alternative concepts of childhood, education and disability. Parental associations as well as independent professionals campaigned for the diversification of ‘expertise’ and the revision of theories and practices. As a result of these bottom-up pressures, the concept of a child as ‘becoming’ or a ‘citizen of the future’ has been supplanted by the notion of a child as ‘being’ here and now (James 2011; Zeiher 2008). The acceptance of childhood as a meaningful period in its own right, and not just in terms of preparation for adulthood, has led to the redefinition of assistance to disabled children (James et al. 1998). Whilst traditional ‘developmental’ approaches are based on a belief in ‘typical’ mental growth, newer conceptions start from an individualized understanding of child development. Developmentalist theories were criticized for establishing benchmarks and deviations, thereby becoming a source of stigmatizing prescriptions that affect both the aims and strategies of intervention with families and children (McKeever and Miller 2004; Walkerdine 2009). Alternatives to the developmentalist approach stress the subjectivity of norms and the significance of contexts like multiculturalism, individual distinctiveness and personal autonomy (James et al. 1998). In line with these theoretical developments, the everyday practice of child care has become based upon a wider understanding of parenting in which families are viewed not only as brokers between a growing child and society, but as the source of autonomy and independence from public pressure (Zeiher 2008). Such ideas have heightened resistance to expert knowledge among the parents of disabled children (Ferguson et al. 1993; McKeever and Miller 2004). While the tensions between special and [fully] inclusive education are directly linked to differences between the medical and social models of disability (Fuchs and Fuchs 1998), contemporary discussion about education for disabled children reflects an understanding of disability as requiring multiple responses. Earlier

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ideas about developing standard institutions and practices to implement the social model have been replaced by the pluralization of approaches and integration trajectories with a focus on activism and self-organization among disabled people in contrast to previous paternalistic approaches (Goodley 2011: 4). One theoretical foundation for the pluralistic approach is the ‘cultural model’ of disability, which in fact rejects the dichotomy between the medical and social models of disability (Devlieger et al. 2003). According to the cultural model, both societal discrimination and physiological difference only have meaning in local social, political and cultural contexts as well as the specifics of an individual’s case. Attempts by the medical and social models to link disability with norms are therefore seen as meaningless, be it in a positive sense within the medical model or a negative way in the social model. The cultural approach to disability highlights the ambiguity of the social model and its implications (a strategy of full inclusion), which have greatly influenced public opinion, but not been structured into a consistent system of institutions and practices due to a narrow approach in regarding inclusion as the process of eliminating boundaries between ‘normal’ and ‘special’ development (Shakespeare and Watson 2001). Applying the cultural model to the issue of education for disabled people highlights the importance of listening to local ideas about the content and methods of education. The views of users or ‘customers’ of education and social services can differ greatly from policy statements about the integrative mission of education (Shakespeare and Watson 2001). Indeed, the institutionalization of education has been interpreted within postcolonial studies as a means of subjugation (Andreotti 2011). Full inclusion and its theoretical basis in the social model of disability may only ambivalently instantiate the right to autonomy, for example if special assistance is needed to support disabled children in education. Traditional educational systems may themselves be oppressive and fail to emancipate (e.g. Freire 1995: 102), making full inclusion an unhelpful goal. The idea that full inclusion is the optimal form of education has been undermined by fears that it can be a risk to autonomy and meaningful choice (Johnston 2000). Conceptual and applied changes in education for non-disabled children have influenced the evolution of inclusion as well as the deconstruction of special education. Today, inclusion is increasingly viewed as a fundamental part of general educational reform and not simply about disabled children: ‘inclusion is in the first place an educational reform issue and not a placement issue’ (Meijer 2010). Thus, inclusion is no longer associated only with inclusive education. New arguments for viewing special education as a sensitive and rational strategy for some children have been put forward in line with the idea of ‘managing diversity’ as a tool for solving the dilemma of universalism versus difference in the quest for social justice in education (Vuuren et al. 2012). Within this approach, inclusion is viewed as one of three measures for high-quality education together with relevance and democracy. The key function of inclusion is to provide access to education that facilitates the resources of students in overcoming social and cultural barriers (Tickly and Barrett 2011). This model is based upon the revision of the two most common conceptualizations of education for disabled people: human

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capital and human rights. While the human capital argument is viewed as an over-utilitarian and very traditional approach to childhood (Thomas and Loxley 2007), the human rights approach politicizes education and transforms it into an arena for the collision of interest groups (Tickly and Barrett 2011). These extremes can be avoided by viewing different forms of education as equally possible with the choice dependent on the features of a particular situation at individual, local and regional levels. The legitimization of a mixed approach to educating disabled children has redefined the meaning of residential care in Western Europe: previously close links between residential care and family poverty have been disrupted and options for residential care settings have been built into more flexible policies of (de)familialization (Lewis et al. 2000: 1042; Read and Harrison 2002: 215). Western European countries have integrated disabled children into existing educational systems in quite different ways, providing various empirical models for comparison (Armstrong et al. 2009: 45). Full inclusion, for example in Italy, has become just one possible strategy for educating disabled children and stands in contrast to multi-track approaches that combine elements of inclusive and special education at an individual or institutional level, for example in France, Denmark and the United Kingdom (Pijl et al. 1997: 13). Successful multi-track strategies require a complicated institutional design to provide a variety of services whilst remaining transparent to users and their families (Pickering and Busse 2010: 2003). In countries that offer it, the multi-track strategy is often based on the following organizational principles: • • •

decentralized decision-making, sustainable inter-professional cooperation and mutual responsibility; recognition that each educational trajectory has both advantages and disadvantages; mixing strategies within particular cases to best meet the needs of children and families (Tomlinson 1982; Baglieri et al. 2011).

These institutional essentials are still unmet in the majority of post-Soviet countries and support for disabled children has generally developed in a similar fashion to welfare programmes in developing countries: blanket universalism rather than targeted help (Mkandawire 2005: 7). At the same time, recent reconceptualizations of educational quality and the greater weight given to context in educational theory suggest that a multi-track strategy may be appropriate for post-Soviet countries. The enthusiasm of scholars and practitioners from Asia, Latin America and Africa in applying multiple approaches and learning from the mistakes of developed countries suggests that late reformers can advance rapidly when establishing institutions and practices of inclusive education for disabled people (Mitchell 2005: 212; Artiles and Hallahan 1995: 11–14). Yet, is such an intensive set of reforms suitable for the Caucasus countries? The complex answer to this question requires recognizing the historical influences on education for disabled children in the region, above all the Soviet concept of special education.

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Special education in the USSR: ascertaining the Soviet legacy The USSR’s third and the most powerful wave of industrialization in the 1920s drove the creation of a social protection system, including the establishment of special education, in the Caucasus region. Before this period, special education was not supported by the authorities, operated only on a voluntary basis and covered a very small group of children. Special schools for children with visual and hearing impairments had been established in the largest cities of Armenia, Azerbaijan and Georgia in the late 1890s and early 1900s. However, this practice was ad hoc rather than part of a systematic plan to provide education to disabled children. By the mid-1930s, three interrelated characteristics distinguished Soviet special education from its Western variants: a deficit-oriented discourse; the concentration of services within boarding schools; and non-transparent procedures for diagnosing and placing children. Soviet education for disabled children was permeated by the ideology of defectology (defektologiya), a supposed science that focused on defects in mental development and which appeared in the late 1930s after the prohibition of pedagogical psychology (paedology). Defectology was rooted in assumptions that child development was unchangeable, necessitating special curricula as well as special conditions for disabled children that could not be provided by families. Susanna Rubinshteyn, one of the leaders of Soviet special education, suggested that two dramatic mistakes could be made when assessing mental development to determine whether a child should attend a regular or special school. The first error was placing ‘normal’ children in a special school and thereby limiting their development through a reduced or ‘special’ curriculum, but the more dramatic mistake was to place a mentally disabled child in a mainstream school: ‘If a mentally retarded [umstvenno otstalyi] child were to be placed into a mainstream school, it would be among the chronic underachievers, start to hate learning and disturb class activity’ (Rubinshteyn 1968: 82). Although more humane alternatives to this viewpoint did circulate among Soviet pedagogues and were proven successful in educating children with multiple learning disabilities, they were not disseminated due to great pressure from the educational authorities (Meshcheryakov 1970). Instead, a highly gradated system of schools and pedagogical training emerged by the mid-1970s with eight types of schools catering to different forms of disability. Each type of school was supported by an academic institute that both assessed disabilities and provided research related to the development and teaching of these supposedly ‘abnormal’ children. Soviet special education generally provided services for disabled children in two types of institution: boarding schools or special care homes for children deemed ‘uneducable’. This legacy of a single institution delivering all provision has made it difficult to build networks of organizations and professionals around disabled children in the post-Soviet period. It was only in 1979 that support for disabled children and their families started to be provided independently from the education system following the introduction of the legal status and bureaucratic

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category rebenok invalid (disabled child). However, the ideology of complete provision within residential schools was reinforced in a special Resolution of the Central Committee of the Communist Party issued in 1987 (‘Measures for fundamentally improving the upbringing, education and material provision of orphans and children without parental care’). Boarding schools for disabled children were staffed with speech therapists, clinical psychologists and social pedagogues earlier than other educational settings in the USSR. Such trends bolstered the notion that educational institutions were entirely responsible for taking care of disabled children. At the same time, professionals were trained to believe that only specialist settings, educators and care workers could support disabled children. The Soviet state neither envisaged nor allocated roles to alternative actors such as parents, mainstream schools, professionals without specialist training, volunteers or non-governmental organizations. Another distinctive feature of Soviet special education was that the authority to place children in institutions lay exclusively with special boards dominated by medical professionals (mediko-psikhologo-pedagogicheskaya kommissiya). These commissions would diagnose ‘mental retardation’ (oligophreniya) and determine the type of residential institution attended by a child; their decisions could not be challenged by courts, school authorities or parents (Korobeinikov 1988: 25). Attempts to establish transparent and democratic decision-making systems in the post-Soviet Caucasus countries have failed and the medical boards remain largely unreformed. Reports from all three Caucasus countries reveal common practices of misdiagnosing mental development and placing children into residential settings even though their needs could be met in mainstream schools (AHRDO 2004; UNICEF 2006a, 2006b). Most critiques of current classification procedures in the region focus on the quality of assessment and numerous mistakes in diagnosis (Civil Society Institute 2007a), but the arbitrary nature of the procedures themselves is rarely questioned. During the Soviet period, the model of special education described above was reproduced across the USSR and the top-down colonialist nature of its spread limited options for adjustments in line with a region’s specifics. However, differences between Soviet republics inevitably affected the implementation of defectology. The Caucasus countries differed from each other in terms of the number of residential care settings, the number of disabled children in special education and the impact of the defectologiya discourse on interventions with children. In Armenia, the dynamic of special education was comparable with Russia and Ukraine in terms of the number of boarding schools, regulations around the placement of children and the theoretical explication of special education (Minasyan 1970: 27). Special education was less developed in Soviet Georgia and Azerbaijan due to these republics’ slower social development (Kasymov 1970: 34). By the end of the USSR, Azerbaijan thus had the same number of special schools as Armenia, but also a higher number of disabled children whose needs were not met by existing provision (Mikhailova 2006: 66). The differences between Caucasus countries in education for disabled children further increased in the post-Soviet period due to different

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policies and various events that shaped the contexts in which schooling was provided.

Education for disabled children in the Caucasus countries: contexts In spite of their similar geopolitical positions and socialist past, the Caucasus countries differ from each other in terms of population structure (urbanization, migration and demographics), political system and socio-economic development (see Table 12.1). These contextual factors shape the education offered to disabled children as well as the scope for reforming special education to better realize children’s rights. Armenia and Georgia have generally encouraged the development of civil society initiatives with a particular focus on children’s rights while societal participation in Azerbaijan has been a reluctant reaction to the direct pressure of international bodies (Lee et al. 2010). Azerbaijan has a higher level of national wealth than its two neighbours following intensive economic growth on the back of high oil prices. However, this has not translated into high spending on the social sector. As indicated in Table 12.1, education spending in relation to total GDP seems sustainable in Georgia and Armenia and reflects rapidly increasing governmental attention to education in Azerbaijan, largely prompted by obvious shortcomings in comparison with the two other Caucasus countries. Yet, access to education in rural areas across the region was and remains worse than in towns and cities, a trend from the Soviet period that was further exacerbated by the decline of the educational system in the 1990s. The rural factor is especially significant in Azerbaijan and Georgia, where more than half of the population lives in non-urban areas. Exposure to conflict and natural disaster has been an important factor shaping policy and societal responses to disability in the Caucasus region. Conflicts in Azerbaijan and Georgia have affected the quality of life for large sections of the population in these two countries while the Yerevan earthquake and the Sumgait Table 12.1 General characteristics of Caucasus countries Indices

Armenia

Azerbaijan

Georgia

Area (sq. km) Population in 2011 Share of population under 18 in 2011 (%) Share of urban population in 2010 (%) GDP per capita (PPP) in 2010 ($) Share of GDP spent on education in 2010 (%) Education expenditure as % of total public spending in 2005

29,743 3,262,000 22.6 64 5,700 2.8 13.5

86,600 9,111,000 27.9 52 10,900 2.8 19.6

69,700 4,469,000 20.9 53 4,900 3.9 13.1

Sources: country profiles available at http://www.indexmundi.com/; UNICEF 2012; IMF data and statistics, available at http://www.imf.org/external/data.htm; Statistical Yearbook of Azerbaijan 2011; National Statistics Office of Georgia, available at http://www.geostat.ge/ (all links accessed 1 December 2012).

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massacre in 1988 triggered the reform and upgrading of welfare services in Soviet Armenia with international support (Verluise 1995). The majority of earthquake victims were children and there was a stronger focus on children’s rights and childhood as a significant period in itself after the catastrophe (cf. James 2011). Post-traumatic stress disorder and the high number of people needing immediate and long-term interdisciplinary care after the earthquake prompted the intensive participation of international organizations, which introduced new approaches towards intervention with disabled people, including community-based mental health instead of the previously closed Soviet psychiatric system (Goenjian 1993). Beyond the recovery efforts after the earthquake, it was also noticeable that Armenian public opinion towards mentally disabled people started to change in the late Soviet and post-Soviet periods due to the activities of bottom-up social movements. Indeed, volunteer involvement has become a strong feature and significant resource of the Armenian social sector (Hakobyan 2008). Across the Caucasus region, access to healthcare is irregular and the majority of disabled children lack medical advice and care. This is especially the case in Azerbaijan, where the infant mortality rate in the early 2000s was more than 80 per 1,000 births despite the official under-estimation of negative public health trends feared by international organizations (UNESCO 2005: 14). As will be discussed later in this chapter, this trend partially explains the motivation of parents to place their disabled children in institutions that guarantee a minimum of health care even if educational provision is scant or completely missing. In the field of education, all three Caucasus countries experienced a period of stagnation in the 1990s when a significant number of children and young people did not regularly attend school. By 2001 around 8–9 per cent of children were out of education in Azerbaijan and Georgia (UNICEF 2012). Non-participation in education was less of a problem in Armenia, but even so 2 per cent of children did not receive regular schooling in the early 2000s (Statistical Yearbook of Armenia 2001). The poor focus of mainstream education on participation affected disabled children by undermining understanding of their rights to study alonsgside non-disabled peers in community settings. Survey data for the Caucasus suggest that the majority of disabled children stay at home and do not receive formal education (AHRDO 2004; EDRC 2006b; O’Brien and Chanturidze 2009). Only a small share (less than one-third) has access to home-schooling, special day schools or inclusive schools. Numerous shortcomings in health care and social support negatively affected projects aiming to establish inclusive education in all three Caucasus countries in the second part of the 1990s. These projects had to operate as emergency support during periods of social crisis, diverting attention away from the development of services. Such conditions did not allow for a critical understanding of inclusive education and discussion of the best way to implement it. This meant that when inclusive education was prioritized in the second part of the 2000s, there was little reflection on how a well-implemented plurality of strategies could have been more effective at meeting the diverse needs of children and their families.

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Inclusive education: an alternative to special education or a requirement of democratization? From its very beginning in the Caucasus region, inclusive education has been more strongly associated with democratic change than educational reform (Yesayan 2008: 20). International actors placed special emphasis on the ‘bottomup’ creation of inclusive schools, viewing parental associations and organizations of disabled people as the main providers of the new approach. Despite funding projects to transfer overseas (arguably ‘Western’) practices to the Caucasus, donors rarely sought to adapt international strategies to specific country contexts (UNESCO 2005: 43). Greater attention was instead paid to reforming the policy and legislative foundations of education for disabled children. The adoption of international standards around the care of disabled children has recently been strengthened in law; Armenia and Azerbaijan ratified the United Nations Convention on the Rights of Persons with Disabilities in 2010 and 2009 respectively, while as of November 2012 Georgia had yet to incorporate the convention into law. Public opinion surveys conducted in the Caucasus countries in the late 2000s found that the social inclusion of disabled people is widely viewed as an issue of humanization rather than rights. For example, in Georgia twothirds of respondents agreed that the business sector should be the main funding source for projects assisting disabled children (Jibuti 2007). In Azerbaijan, public opinion believes that clear rises in national wealth and living standards should be immediately reflected in care for disabled children (Jolly 2009). This direct linking of education to questions of resources oversimplifies the problem of inclusion and prevents the development of nuanced strategies for educating disabled children. There is considerable agreement that strategies for implementing inclusive education in the Caucasus have been ineffective and overly narrow (USAID 2010: 41). Supporters of a one-track approach generally use statistics about the number of children in institutions and the number of residential settings as benchmark indicators, thereby missing significant contextual factors. In particular, the lack of community-based services for disabled children and their families was downplayed in the push to deinstitutionalize with the consequence that inclusive schools started to be viewed as facilities for meeting children’s multiple needs. Inclusive education thus acquired a similar status to residential care in the Soviet and early post-Soviet periods: collecting all services under one umbrella. Familyfocused approaches were not consistently promoted due to the continued emphasis on schools as the central actors providing for children’s needs. Furthermore, the education of disabled children was not related to broader trends in the sector: participation rates were viewed as the only relevant criterion, but the crises facing schools in each Caucasus country (collapse would be a more appropriate description in Azerbaijan) were not taken into account. There was hence little discussion of how mainstream education should be reformed to be genuinely emancipatory and positive. As demonstrated in the following sections on each country, the detailed analysis of policy change around inclusive education in Armenia,

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Azerbaijan and Georgia can suggest successful ways of supporting children as well as approaches that perpetuate existing institutions and practices.

Armenia: success through late reforms Of the three Caucasus countries, Armenia has experienced the most rapid transfer of disabled children into mainstream schools. The number of inclusive schools grew from 15 in 2004 to 115 in 2009 while special schools have developed external partnerships with reformed rehabilitation centres and day care centres. In some parts of the country, the educational system for disabled children has thus followed a multi-track model in terms of collaboration between various institutions (USAID 2010: 44). Several factors have facilitated such trends: the decentralization of policy-making; facilitation of multiple options for special education, including special schools for children living in families and special classes in mainstream schools; an upgraded rehabilitation and health care system; and, lastly, various retraining programmes for staff in special education settings. In contrast to Azerbaijan and pre-2006 Georgia, Armenian policy-making is characterized by a high degree of decentralization and thus flexibility in changing legal regulations. In 1998, the Armenian parliament issued a new law about the inclusion of disabled children, which guaranteed both the right to learn in mainstream schools and parental choice in school selection. There were initial fears that this law would be incompatible with the existing practices and decision-making of the medical boards that assess children with impairments. Indeed, these boards continued to be pivotal in placing children in residential care settings because they lacked awareness of the new law and had not established procedures for its implementation. One possible explanation for such professional opposition to the law is that ‘defectologists’ interpreted it as championing inclusive education and therefore condemning existing practices of special education. In 2006 a set of laws aiming to complete the move towards inclusion was issued, after which regulations strengthened a parent’s right to choose the most suitable educational trajectory for their children (Yesayan 2008: 21). Armenia stands out from Azerbaijan and Georgia in having a comparatively developed special education infrastructure that is used by a greater proportion of disabled children. Special education did not decline following the end of Soviet rule, but was transformed with the establishment of new types of classes and settings focused on providing education for children living in families. Provision in rural areas also expanded in the 1990s. Special education developed under multiple international influences. On the one hand, methods and curricula were adopted from Western countries, particularly the United States, but on the other hand, managers and teachers also regularly visited the Institute of Special Education in Moscow for training, where they engaged with messages very different from inclusion (Melik-Baxshian 2006). If viewed positively, this exposure to different approaches promoted considerable flexibility in combining various educational models and pedagogical techniques. The reorientation of special school staff in

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Armenia was more successful than in Georgia and Azerbaijan: uniquely for the Caucasus region, teachers and senior managers of special schools underwent re-training in addition to welfare professionals, thus broadening acceptance of reform. Armenian supporters of special education have criticized inclusive schools as settings that only help children with light and moderate degrees of disability and this critique has been accepted by the Armenian authorities, which established a new strategy for special education in 2002 (Kafjan and Azaryan 2006: 75). Now 26 settings, including 14 boarding schools, offer a special (i.e. reduced) curriculum for disabled children. Yet, there has been a move away from residential forms of support: the number of special education institutions offering residential care fell from 34 in 1995 to 14 in 2007 and the number of children placed in them declined from 5,900 to 1,700 over the same time period (Statistical Yearbook of Armenia 2001–8). Boarding schools have totally disappeared in rural areas. Correspondingly, the number of special day schools as well as the number of children learning in them has increased (see Table 12.2). Special education in Armenia has thus become more firmly rooted in community settings, moving it away from the Soviet model. Gradually Armenia has abandoned typical post-Soviet expectations that special schools will provide all-encompassing care to disabled children from poor families. A 2004 UNESCO survey stressed the correlation between household Table 12.2 Educational institutions for disabled children in the Caucasus (using most recent figures from 2009–11). N/a = not available Indices

Armenia

Azerbaijan

Georgia

Number of disabled people under 16 Number of boarding schools for disabled children Number of special day schools Number of inclusive schools Number of residential care settings without educational input Disabled children in boarding schools Disabled children in special day schools Disabled children in inclusive schools Disabled children in residential care settings without educational programmes

11,100 14

60,000* 11

10,700 26

28 115 2

14 7 2

n/a 19 13**

1,700 2,800 n/a 360

1,353 2,664 268 348

1,427 n/a 200 n/a

Sources: O’Brien and Chanturidze 2009; Statistical Yearbook of Armenia 2011; Statistical Yearbook of Azerbaijan; UNICEF 2005; multiple news sources and interview materials. * Data are reported from the Ministry of Labour and Social Security, without any breakdown per type and degree of disability (including the chronic diseases for which children are entitled to assistance). This is due to the fact that all the recorded children receive state benefits irrespective of their condition. The size of the payments ($20 per month), compared to the average income of families, makes it quite appreciable for poor families. In some cases, this raises doubts over the trustworthiness of the evidence and diagnosis presented to obtain the financial support (UNICEF 2006a). ** Figures from 2006. Children are also placed into settings for adults and the total number of these institutions includes settings for children and for all.

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wealth and the placement of disabled children in institutions: two-thirds of disabled children attending day care centres were from relatively well-off families while more than three-quarters of users of residential care centres were from poor families (UNESCO 2005: 45). By the second part of the 2000s Armenian special schools were increasingly focusing on meeting educational needs and solving other issues in disabled children’s lives in cooperation with external services (Romanov and Iarskaia-Smirnova 2008: 107). Residential schools have stopped functioning as a last resort for children with multiple disabilities or from poor families. In 2006, the Armenian government established a list of medical conditions that grant the right to home visits by a qualified teacher for children with special educational needs; whilst potentially objectifying and stigmatizing, this measure was designed to prevent the educational exclusion of disabled children who live with their families without resorting to residential institutions. A significant factor in the rapid development of education for disabled children in Armenia was the transformation of the medical rehabilitation system following the powerful earthquake in 1988. By the mid-1990s, Armenian rehabilitation services had undergone substantial reform in terms of service delivery and the re-training of professionals. The International Post-Traumatic Rehabilitation Center (IPTRC) established by the Red Cross in Yerevan in 1992 began to disseminate new practices and international approaches to rehabilitation for disabled people. The ArBeS healthcare centre within the Republican Paediatric University Hospital became one of the first early intervention services in the Caucasus region by offering day care services for children with special needs. In the space of 15 years the rehabilitation system was transformed from a monopoly of the state healthcare system into a variety of services with relevant infrastructure for professional support (Romanov and Iarskaia-Smirnova 2008: 103). Such positive developments do not mean that educating disabled children in Armenia is problem-free. For example, there is a distinct trend to include children at pre-school stages rather than in primary and secondary education: between 2002 and 2005 the number of disabled children attending general kindergartens increased from 593 to 2,010, but the dynamic at school level was more modest (USAID 2010). There is also an issue around inclusive education in rural areas, where the social and economic infrastructure is still insufficient to build useful networks of professionals and organizations around children. Less than 40 per cent of people in large and medium rural communities have access to healthcare and education while these indices are even worse in small rural communities (EDRC 2006a). Furthermore, an assessment of access to social services in various localities showed that Armenian households from large cities and small villages apply for family support benefits more often than those in large and medium villages. Families from small villages were more likely to regard these benefits as an important part of their family budget (EDRC 2006b: 6). In combination with limited educational options (all special schools in rural areas had been closed by 2005 while inclusive education is mostly limited to large cities), the state strategy of simply providing financial benefits can jeopardize the implementation of the right to education. Since 2009, several internationally funded projects have sought

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to improve social and economic life in rural communities, including educational provision. However, these efforts have not yet created a sustainable social infrastructure in rural areas, where households continue to remain vulnerable in terms of income and social ties (Babajanian 2005). The development of education for disabled children will require a platform of community-based care, but this is something that cannot be advanced by projects focusing more on donors’ expectations than the needs of local communities (Kang 2011: 227). To summarize, Armenia has employed various strategies to develop inclusive education. A short focus on a single model of integration into mainstream schools from 1998 until 2002 was changed in favour of a multi-track strategy offering different forms of education to disabled children. The Armenian case highlights the importance of local contexts when planning and evaluating inclusive education: the state of infrastructure, services, policymaking structures and high urban-rural stratification in terms of access to social services are important factors. The country’s use of overseas experience suggests that multi-track strategies can be a useful model for transforming education within broader paradigms of family-focused intervention, community empowerment and inter-departmental cooperation.

Azerbaijan: putting the cart of inclusive education before the horse of general educational reform Access to education is a topical issue in Azerbaijan due to several mutually resonating factors, including rural impoverishment, comparatively high rates of child labour and the consequences of the Nagorno-Karabakh conflict (Dayıoğlu 2007). Azerbaijan is the largest and the most rural country in the Caucasus: half of the population lives in the countryside and this share increased during the 1990s and stayed steadily high in the 2000s. More than 60 per cent of the country’s population lived below the poverty line in the period 1995–2001 with even higher shares in rural areas (International Monetary Fund 2004). Such impoverishment partly explains the high rates of child labour in Azerbaijan, where 4.5 per cent of children under 14 are in work (United States Department of Labor 2010) and only 61.9 per cent of 15–18 year olds were in education in 2011 (UNICEF 2012). These developments have inevitably narrowed options for older disabled children, especially around inclusion, by reducing general appreciation of the benefits of education. During the Karabakh War (1988–94) more than one million displaced people arrived in Azerbaijan and immediately encountered problems with welfare provision, including education. By the end of the 1990s, the majority were still living in special refugee camps and many children lacked regular access to schooling (Blair 1997: 25). Forty-four thousand young men and 38,000 young women were out of regular education at the end of the 1990s, which was the deepest period of war and movement of people (UNESCO 2010). In the mid2000s Azerbaijan had the highest number of refugees and child refugees of any postsocialist country (UNICEF 2007: 36), but only a very patchy social safety

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net, not least for particularly vulnerable refugees. It has proved very difficult to provide education and welfare provision to disabled children in such conditions, not least due to the low involvement of international agencies with resources and expertise. General trends of declining access to education in Azerbaijan have affected the inclusion of disabled children in mainstream schools: the number of pupils in boarding schools temporarily increased in the mid-2000s (from 3,257 in 1995 to 4,789 in 2004) before declining after 2004 (AHRDO 2004). It was only in 2007 that special day schools for children living in families were created, where approximately 2,664 disabled children study (Table 12.2). Special classes in mainstream schools have existed since 1991, but just 600 disabled children study in them, and altogether non-residential settings work with just one-fifth of disabled children in Azerbaijan (Statistical Yearbook of Azerbaijan 2008, 2009, 2010). Furthermore, most types of special education (boarding schools, day schools and special classes) are only available in cities: 14 separate schools operate in the country’s capital Baku, where all special classes in general schools can also be found. The majority of disabled children therefore do not receive regular education, whether in inclusive or segregated settings. Home education remains the main option in Azerbaijan with more than 48 per cent of parents participating in one survey on education for disabled children mentioning this way of educating their children (Mikhailova et al. 2010: 108). This trend is however problematic because independent experts and parents are frustrated by the extremely poor quality of home-schooling and inevitable isolation experienced by children. One distinctive feature of current inclusive education projects in Azerbaijan is the nature of NGO involvement, namely how work with disabled children is often folded into broader activities. In contrast to Armenia and Georgia, these organizations are not necessarily associations of disabled people or their relatives, but often focus on environmental issues and basic needs in rural parts of the country, such as water delivery. Their access to these areas means they can promote activities related to education by publishing manuals for teachers and children, offering training and counselling to parents, inviting doctors and other professionals and collecting information about children’s needs for the authorities (UNESCO 2005: 58). These NGOs do not focus on a particular model of education for disabled children, but on the general task of meeting educational needs. Their work thus represents the concept of multi-track education in action. The vacuum of state services for disabled children in Azerbaijan has partially been filled by the 12 parental organizations that were founded during the last ten years to organize day care centres and family visiting services. Two parental associations cooperate with residential care settings: Goncha works with a psycho-neurological centre that provides services for children with autism, Down’s syndrome and other forms of learning disability while Mushfig opened a day care centre for children with various disabilities and recruited mothers as staff. These mothers became professionals, studying in the USA, Russia and European countries through various grant programmes (UNESCO 2005: 60).

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Interviews in 2006 with the mothers of disabled children identified various risks associated with this solution to the vacuum of state services: [this work] is not substantial: sometimes I think that I just pretend and I am not sure who am I, mother or professional. I take only things which are relevant to my child and it’s a big problem to apply my skills to other children’s cases. (Mother of a child with cerebral palsy, 43 years old, head of a parent organization). Another mother stressed the need for supervision by professionals: ‘I realize the necessity to attract professionals – they have to monitor us, but I am scared by this perspective: what they might say about my work, it would be not about the job, but mostly about my parental status’ (mother of a mentally disabled child, 28 years old). The involvement of parents thus clashes heavily with dominant ideas in Azerbaijan’s welfare sector about the ‘expertise’ and status of trained professionals. The introduction of the specific law ‘Education for disabled children’ in 2001 did not prompt such significant change as similar legislation in Armenia due to the centralization of Azerbaijani decision-making around social policy issues and the declarative nature of its policy statements. This top-down political control undermines the grassroots generation and dissemination of innovation. The disempowerment of parents further aggravates the lack of change, with survey data indicating the low expectations of parents in relation to education for their disabled children. Education is mostly viewed as a means for increasing communication and not as a means of increasing children’s skills or promoting inclusion (Mikhailova et al. 2010: 111). As with earlier schemes for non-residential education, all pilot schemes and reforms around inclusion are based in Azerbaijan’s capital, Baku, while education and other services for disabled children in other regions have developed irregularly. Although a few local educational authorities are working to include disabled children in mainstream classes, their initiatives are not supported by the central authorities in spite of schools’ complete reliance on federal funds (Mikhailova et al. 2010: 109). Instead, the rehabilitation day centres that were opened after 2009 are mostly sub-departments of boarding schools aiming to adjust the balance between residential and home-based care. Education for disabled children in Azerbaijan is ultimately undermined by the vacuum of state social services – the task of establishing support continues to be more pressing than its transformation into more inclusive institutions. This lack of provision has become particularly acute in rural areas. Existing resources in Azerbaijan – namely parental activity, mostly by mothers, community work and various NGOs – are arguably unsupportive of the country’s focus on a single model of full inclusion that downplays the role of specialists and emphasizes the work of non-professionals. Furthermore, the lack of reform to the general education system and continued neglect of schools in rural areas make it difficult to

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expect that placing disabled children in mainstream settings will be beneficial. Changes to the overall education system are needed to ensure that inclusion is effective in promoting disabled children’s rights and needs.

Georgia: at the crossroads of reform The post-Soviet transformation of education for disabled children in Georgia can be divided into two periods: scattered and uneven attempts to introduce inclusive approaches between 1990 and 2005 followed by the managerialization of the welfare system, including education for disabled children, from 2005 onwards. Data from a UNESCO survey (2005) indicates the highly constrained range of educational options for disabled children before the 2005 reforms and how social stratification shaped the choices made by parents. The study interviewed a total of 102 parents (98 mothers and 4 fathers) and 68 disability professionals in five Georgian regions about children’s needs and the work of local services, thus providing important information about how welfare support is integrated into family life. As in the two other Caucasus countries, parents placing children in residential care institutions usually had lower material resources and social connections than parents selecting special day or inclusive schools. Two-thirds of parents with children in residential settings thus judged their decision to place a child in a boarding school as the only possible way to obtain comprehensive care given the severe absence of family resources. In contrast, the parents of children in inclusive or special day schools were often better-off and benefited from informal networking and access to various medical and welfare services for their children. The high levels of poverty and disempowerment in Georgia (as in all Caucasus countries) can thus be a block to the development of inclusive education due to the failure of the welfare system to support the costs of raising disabled children within families. In addition to requiring material resources, families may find it difficult to provide the time and care input needed for inclusion in the absence of community services. Ultimately, the education system did not offer real choice to disabled children in Georgia before 2005. Access to special day schools and inclusive education was greatly determined by the socio-economic status of households while only children who lived in families could receive a multi-disciplinary care package delivered by multiple services. The task of providing disabled children in Georgia with access to education therefore required the optimization of each form of schooling and greater flexibility to move between pathways in line with the changing needs of children and families. However, it is unclear whether reforms since 2005 have met these challenges. The recent transformation of education in Georgia is the direct result of the liberalization and decentralization of the country’s welfare system in the period 2005–10. Reforms following the country’s ‘Rose revolution’ under Mikheil Saakashvili have emphasized quality, efficiency and access as core principles in order to convert Soviet approaches into ‘Western’ strategies for managing education and health care (Machabeli and Bregvadze 2008). The financing and

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management of welfare services have been devolved with budget planning, fundraising and the attraction of clients becoming tasks for individual services. Voucher-based funding schemes became the core funding instrument for secondary education in 2005 and residential care for children in 2010. A new scheme of health insurance for disabled children similarly delegated funding to parents in 2006. Alongside this decentralization, a network of inter-agency boards aimed to integrate separate services into a local system for providing social needs. Thus, the Child Care Division of the Ministry of Social Affairs is tasked with building cooperation between agencies involved in developing inclusive education. In line with the policy priority of full inclusion, a pilot project in 2005–8 established new services in ten Tbilisi mainstream schools to support the educational integration of disabled children. Such teams included special education consultants, neurologists and speech and occupational therapists. Parents were also engaged in the project to cover shortages of professional staff. Their work in organizing break-time activities and supporting teachers in classrooms reinforces earlier evidence about the need for parental input to achieve inclusion (Mantaluta and Rukhadze 2008). Georgian policy priorities related to residential care have changed in recent years as the difficulties of blanket inclusion – both for individual children and in terms of establishing effective community services – became apparent. There has thus been a move away from the original focus in 2006–8 on cutting the number of institutions and children in them. Two programmes focused on child welfare (2008) and social rehabilitation (2010) have encouraged the development of small non-governmental residential settings and established common standards for the long-term care of looked-after children in order to reduce frequent violations of rights (Public Defender of Georgia 2012). A further step towards the liberalization of residential care, including boarding schools for disabled children, was taken in 2011 with the introduction of regulations linking funding to standards of care in an attempt to improve the quality of services. There has only been a slight decline in the number of residential care units since 2006, but a significant decrease in the number of children in residential settings: from 5,200 in 2004 to 2,300 in public residential settings and 1,200 in private settings in 2008 (UNICEF 2010). At the same time, the monitoring of residential care settings suffers from a lack of transparency and thus often fails to address the violation of children’s rights (O’Brien and Chanturidze 2009). This lack of oversight is worrying given that the placement of children into foster families is not fully effective: more than 10 per cent of fostered children returned to residential settings each year between 2008 and 2011 (Public Defender of Georgia 2012). The process of uniting disabled children from institutions with their birth families is also unsuccessful because many of these children do not use even basic welfare services (ibid.). Annual reports by Georgia’s Public Defender since 2008 have thus noted increasing numbers of children living with relatives, but not receiving any type of care. Public disaffection with recent reforms has prompted moves to revise Georgia’s managerialist approach to child welfare. The parents of disabled children and staff

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in social service agencies have repeatedly complained about the low value of vouchers and insurance compared to the cost of services (Badasyan 2012). In combination with the ill-functioning system of diagnosing disability based on largely medical criteria, vouchers and insurance have aggravated the problem of access to the welfare system (Kupunia 2010). This is unfortunate because the number of families with disabled children who receive financial support from the state fell from 12,625 in 2004 to 2,926 in 2010 following the introduction of a means-tested poverty benefit in Georgia (Ministry of Labour, Health and Social Affairs of Georgia 2010). Indeed, an independent evaluation of child poverty in Georgia criticized the introduction of this targeted social assistance for failing to be child-sensitive, especially in relation to rural inhabitants and families with disabled children (Bradshaw et al. 2009). Unsuccessful attempts to establish community-based services for disabled children and their families have further sharpened the obvious discrepancy between the policy intention that disabled children live with families and the reality of cuts to state support for families. A recent review of local authorities revealed such a dire lack of day care centres and other services that experts stressed the inappropriateness of cutting residential care whilst alternatives do not exist (Civil Society Institute 2007b). In spite of the various reforms affecting educational provision for disabled children, local authorities in Georgia still do not provide sufficient alternatives to residential care, which continues to be regarded as the key institutional solution for families in crisis (O’Brien and Chanturidze 2009: 55). Expectations that inclusive education would displace special schools have not been met and fewer than 20 mainstream schools implement inclusive programmes. Public debates about the transformation of Georgia’s welfare system, including services for disabled children, highlight that institutional and budgetary reforms must be accompanied by local strategies for integrating the various benefits and interventions used by children and families. Whereas Georgian reforms were previously regarded as a model for other Caucasus countries (Machabeli and Bregvadze 2008), there is today greater reflection about the effectiveness and appropriateness of managerialist approaches in the social sector (Maglakelidze 2011). Although the Georgian government is correct that the country’s welfare system should be liberalized, arguments have been voiced that disabled children and their families in Georgia need a more elaborate system of service delivery that meets diverse needs and provides fair access (UNICEF 2010: 7). Overall, the need to further professionalize Georgia’s welfare sector must be combined with measures to encourage local diversity and flexibility in educational provision (Kim 2011).

Conclusions: revising paths towards inclusion Developments in the Caucasus countries provide strong evidence of the need for a range of educational tracks that respond to the complex contextual factors shaping the education and well-being of disabled children (Tisdall 2006). The provision of diverse forms of education and the reform of procedures for placing children in particular settings must be key priorities. Recognizing the underlying

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causes of disabled children’s exclusion from mainstream education is crucial for achieving reform. The violation of disabled children’s rights to education in the Caucasus countries is largely the consequence of the monopolistic system of special education established in the USSR. During the Soviet period, education for disabled children was characterized by the combination of all services under one roof, non-transparent decision-making around placement and a focus on the ‘defects’ rather than strengths of a disabled child. Today education in the Caucasus countries (especially Azerbaijan and Georgia) continues to combine services within one setting and thus has not developed the professional networking around children and families that is crucial for educational and social inclusion. Such practices isolate disabled children from the mainstream either through placement in boarding schools or being left out of education altogether. The complexity of these segregationist dynamics highlights the importance of coordinating education reform with changes to the overall system of social assistance to disabled children and their families. Inclusive education will remain hostage to numerous problems in the social spheres of the Caucasus countries as long as educational reform for disabled children is viewed as a separate project to the overhaul of mainstream education. Too many expectations were laid on the model of full inclusion in the 1990s, which could not be implemented due to broader shortcomings in welfare and educational policies and a historical preference to provide services in a single setting instead of building flexible networks around children. These trends have significantly reduced options for a pluralist approach to educating disabled children. The contexts shaping the education of disabled children in Armenia, Azerbaijan and Georgia demand a variety of educational strategies that can adjust to diverse family circumstances and institutional arrangements.

References AHRDO (Aran Humanitarian Regional Development Organization) (2004) Main Reasons for School-Age Disabled Children Not Having Access to Education in the Central Region of Azerbaijan. Barda: Aran and Oxfam. Andreotti, O. (2011) Actionable Postcolonial Theory in Education. London: Palgrave Macmillan. Armstrong, A. C., Armstrong, D. and Spandagou, I. (2009) Inclusive Education: International Policy and Practice. London: Sage. Artiles, A. and Hallahan, D. (1995) Special Education In Latin America: Experiences And Issues. Westport, CT: Praeger Publishers. Babajanian, B. (2005) ‘Bottom up and top down? Community development in post-Soviet Armenia: The social fund model’, Social Policy and Administration, 39(4): 448–62. Badasyan, E. (2012) ‘Calls for better provision for Georgia’s disabled children’, CRS Issue 628, 6 February 2012, available online at: http://iwpr.net/report-news/calls-better-provisiongeorgias-disabled-children (accessed 8 September 2012). Baglieri, S., Valle, J. V., Connor, D. J. and Gallagher, D. J. (2011) ‘Disability studies in education: the need for a plurality of perspectives on disability’, Remedial and Special Education, 32(4): 267–78.

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Index

access issues for the disabled 168, 170 agency, individual 3, 13, 141, 148 Andrey Rubley (film) 89–90 Apsit, Alexander 70 Arendt, Hannah 197 Armenia 5, 8, 13, 245–6, 251–8 Around the Soviet Union (film) 83 Assa (film) 90–1 Astakhov, Yuri 88 Azerbaijan 13, 245–6, 251–4, 258–61, 264 Balkan countries 4, 13 Ballad of a Soldier (film) 80 Barnes, C. 179 Barton, L. 166 Basic Income Earth Network (BIEN) 198 The Battleship Potemkin (film) 68 Bauman, Zygmunt 198 begging 26–7 benefit entitlements 25, 230–1, 257 Bérubé, M. 180 biopower 6, 76 Bocelli, Andrea 158 body, the, conceptualizations of 143–4 Bogin, Mikhail 81 Bolshoi Theatre 88 Bonnell, V. 67, 69, 75 Bosnia and Herzegovina (BiH) 13, 226–41 Brezhnev, Leonid 81 Bulgakova, O. 73 Bulgaria 13, 141–60, 195–6, 226–41 Burr, R. 240 Caldeira, T. 175–6 Campbell, F.K. 142 Can’t say Goodbye! (film) 86–7 Carey, Allison 165 categorization of disabled people 205 Central Asia region 204–22; civil society in 211–13; disability organizations in 213–14

The Chairman (film) 80 Chalklen, Shuaib 220 charity: church-based 123; private 20–1 child care 247 child development 247 child protection 229 childhood, ideology of 227 children as ‘becoming’ and as ‘being’ 247 children’s rights 233–4, 237, 241, 264 citizenship: ethnographic views of 170–8; in relation to disability 166–8, 173; theorization of 165–7 citizenship claims 178–9 civil society (in Central Asia) 211–13 Commonwealth of Independent States (CIS) 4 community-based services 113, 254 comparative research 11 corruption 207, 239 Crawford, R. 155 Croatia 232 Cruikshank, Barbara 180 cultural model of disability 248 Cutcher, Olga 88 Czech Republic 188–9 Deacon, B. 231, 240 decentralized policy-making 255 ‘defectology’ 3, 143, 250, 255 ‘deficit approach’ to health 3, 122, 124 dependency 83, 234 Derzhavna Dopovid 172, 174 ‘deserving’ disabled people 4 Diagnostic and Statistical Manual (DSM) 98, 112 disability: different conceptualizations of 2–3, 7, 23–4, 87; negative connotations of 12; prevalence of 2, 167–8, 206; social construction of 121; society’s reaction to 2–3, 121; Soviet definition

Index of 101; Ukrainian definition of 169; see also cultural model; medical model; social model ‘disability enterprises’ (in Ukraine) 174 ‘disability ethics’ (Scully) 197 disability politics, international influences on 13 disability rights movement 93, 103, 113, 166–9, 178–80, 221, 232 disability studies 7–12, 147, 159; British 7, 142; in Eastern Europe 8–12 Disabled People’s International (DPI) 169 disablism 142–3, 146, 149, 151, 158–60; definition of 142 discrimination on grounds of disability 1–5, 221; group-based 122; in Hungary 124–5, 137–8 Dobrenko, E. 72 dobytysia 179 Dunn, Ethel and Stephen 10 Durov, Boris 86 dystonia 99 education: of the disabled 196–7, 227–8, 246–9, 252–3; politicization of 249; underlying goals of 245–6, 260; see also inclusive education; special education Eisenstein, Sergei 68 employment of people with disabilities, proposed programme for 198–9 empowerment 176–8, 219 equal opportunities policies 123–5, 171–6 European Convention of Human Rights 111 European Union (EU) 104, 185, 191, 226–30, 234–6, 241 European Values Study 157 Every Tenth (film) 87–9 The Examination of Conjoined Twins (film) 81 ex-servicemen in the Soviet Union 18–33, 42, 46, 70, 72, 76; collectve identity among 31–2; portrayal in films 90; reintegration into working life 28–31; resettlement to nursing homes 80 familialism 157 Fefelov, Valery 79, 82 Field, M.G. 100 The Fighter Pilots (film) 77 films 67–93; portrayal of disability in 68, 77, 82, 90 Fischer-Rosenthal, W. 135 focus group discussions 105–7, 112 Foucault, Michel 6, 144–5

271

France 190 Fraser, Nancy 166 full employment 197–8 Gaidai, Leonid 83 gender issues 156–8 Georgia 13, 245–6, 251–4, 261–4 Goffman, Erving 122, 209 Golovatii, Gennadii 88–9 Golovskoy, V. 79 Goncha 259 Goodley, D. 7, 142 Gorbachev, Mikhail 84, 87 government-oriented NGOs (GONGOs) 212–14 Graham, Loren 61 Great Terror (Russia, 1937–38) 22 Grigely, J. 70 Guskov, G. 81–2, 88, 187 Hacking, I. 99 Hahn, H. 144 hand symbol in the Soviet Union 45–7 health care, standards of 253, 257 health insurance 262 Heidegger, Martin 145 Holston, J. 175–6 Hong Kong 189 Hughes, B. 143–6, 154 human rights 7, 13, 82, 87, 93, 195, 197, 233; international agenda for 241 human rights-based approach to disability 209–11, 216–22, 249 humanitarian aid 234–5 Hungary 13, 121–38, 190, 196–7; research on disability in 124–34; types of living with disability in 135–8 Iarskaia-Smirnova, E. (co-editor) 156 impairment: different views of 155–60; as distinct from disability 121, 142; meaning of 152–3 inclusion 238–41; promotion of 240–1; see also social inclusion inclusive education 13–14, 122–4, 245–9, 253–64 ‘independent living’ 142–5, 238–9 India 190 innovation, resistance to 61 institutionalization of disabled people 195–6, 205 Integrated Service Solution (ISS) 189–90 International Classification of Diseases (ICD) 98–100

272

Index

International Monetary Fund (IMF) 230–1 International Post-Traumatic Rehabilitation Center, Yerevan 257 ‘intersectional’ approach to disability 3 ‘invalid companies’ (Slovenia) 188–9 Italy 249 Japan 190 Journal of Social Policy Studies, Russian 10 Kaganovsky, L. 78 Kardin, V. 30 Kazakevich, E. 31 Kazakhstan 206–7, 212–20 Khrushchev, Nikita 78, 81 Kirov Prosthetic Factory 56 Kisselev, Yuri 82, 187 Kjellberg, A. 166, 179 Klein, Naomi 234 Konchalovskii, Andrei Mikhalkov 90 Kononov, Viktor E. (and ‘Kononov’s arm’) 12, 42–4, 47–52, 57–61 Kotkin, Stephen 18 Krugman, Paul 234 Kulik, A. 54 Kyrgyzstan 206–7, 220 Latvia 12, 99–113 Lawton, A. 82 Lefkowits, J.Y. 108 Lendvai, N. 226, 236 Lenin, V.I. 78 life stories 121, 125, 137–8 listed patients in Latvia 102 Lithuania 189 Luhrmann, T.M. 98 Luse, Agita 97 McCagg, W. 9 McWhorter, L. 6 Maglajlic-Holicek, R.A. 238 mahallas 212–13 ‘male gaze’ 147 managerialism 262–3 Marshall, T.H. 165–6 Marusic, A. 104 Marxist-Leninism 69 medical boards for assessment of children 251, 255 medical model of disability 3, 194, 205–10, 247 medicalization of disability 143, 154–8 Meekosha, Helen 7 Mehilane, L.S. 104

Meijer, C.J.W. 248 mental health, conceptualizations of 12 mental illness 97–113; conceptualizations of 97; Latvian definition of 104; Latvian media representations of 108–12; Latvian public’s view of 106–7, 112–13; social construction of 98–100 Merleau-Ponty, M. 143–4 Michalko, R. 149, 156 mobility disability 165, 168 modernism 5, 74, 76 modernization in the Soviet Union 69–70, 76–7 Moldova 185 moral obligation to work 185–7 Moser, I. 148 multidisciplinary perspectives 12–13 multi-level governance 226–7 Mushfig 259 Nagibin, Yurii 80, 84–5 networking among disabled people 221 neurasthenia 99 neuroses 101, 104–5 New Economic Policy in Russia 21, 45 non-governmental organizations (NGOs) 211–12, 226, 231–40, 259; and inclusion 238–9 ‘normal’ and ‘abnormal’ members of society 4, 122, 195, 199, 247 Nove, Alec 18 novels 77 nursing homes 79–80 occupational therapy 186 One Million Two Hundred Thousand (film) 72–4 Open Society 232 Operation ‘Y’ (film) 83, 85 Orthodox Christianity 76 Ostrovskii, Nikolai 23, 77 Pair (film) 81 Pamporov, A. 157 parental choice in school selection 255 parental involvement in education 260 parental organizations 237, 247, 259 passports, internal 22 Paterson, K. 143–6 patriarchal values 156, 158 Pavlenko, Piotr 77 Pavlov, Ivan 101 pension provision 25–7, 32–3, 79, 123, 176 Pentslin, Eduard 77

Index perestroika 9, 68, 87–93, 168, 213 Petryna, A. 179 phenomenology 143–4, 159 Phillips, Sarah 3, 10, 144 Philo, G. 108 Pinto, P. 190 pluralist approah to education 264 Poland 189, 194–5 Polevoi, Boris 53, 77 policy experts, role of 231–2 ‘policy translation’ (Lendvai and Stubbs) 236 Poloziuk, Oleg 168–70, 179–80 Polt, R. 160 Popov, Boris 60 Portugal 190 postmodernism 246–7 postsocialist countries 2, 7, 11, 141 post-traumatic stress disorder 253 poverty 185, 197, 230, 249, 257–8, 261–3 Pravda 19–20, 59 prosthetics 42–4, 47–61, 69 psychiatry, major and minor 99–101, 105, 113 psychosis 101 public opinion 89 purges, Stalinist 22–3 Pyrev, Ivan 78 quota systems for disabled employment 172, 188–93 Radakov, Alexei 71 ‘rational management’ of disability 76 Recovering to Life (film) 69 refugees 258–9 ‘regimes of truth’ 151 rehabilitation of the disabled 87, 123, 169–70, 174–5, 191, 197, 199, 257, 260 requirement to work 26 ‘reserve armies’ of labour 71, 190 Reshchikov, Dmitrii 50 Residagic, E.K. 238 residential care for the disabled 6, 11–12, 27, 79, 228–9, 239, 249–51, 257, 261–3 Return to Life (film) 83–4 Rifkin, Jeremy 185, 198 Romania 190, 196 Rose, N. 113 Rubinshteyn, Susanna 250 Runswick-Cole, K. 142 Rwanda 188

273

Saakashvili, Mikheil 261 samizdat literature 84, 87 Scully, J.L. 197 Serlin, David 50 sexuality and disability 13, 144–51, 155–9 Shakespeare, T. 144, 151, 154 Shakhmalieva, Ayan 91 Shalamov, Varlam 80 Shamov, Ivan 83 sheltered workplaces 193–5 Shyrak organization 217–20 Siegelbaum, L. 9 Six o’clock in the evening after the war (film) 78 Skultans, V. 99 Slomšek, Anton 186 Slovenia 186–96 social constructionism 98–100, 246–7 social engineering 69 social exclusion 93, 100, 134, 187, 205, 237 social inclusion 228, 231, 235, 239, 254 social model of disability 103–4, 142–3, 167, 169 social welfare bodies 72 socialist realism 78 Sofia Center for Independent Living 145 Somers, Margaret 165 Soviet Constitutions (1918, 1936 and 1977) 19, 21, 70, 75, 83 Soviet social policies 18, 68 Soviet welfare policies 18, 32 Spasskaya labor colony 205 special education 246–52, 255–6, 259, 263–4; in the Soviet Union 250–2 special schools 263 Spring, D. 67 Sri Lanka 188 Stalin, Joseph 19, 22, 25, 31, 42, 58–9, 78, 81 Stalin Prize 50–1 Stalinism 72 state socialism 2–6, 93, 184, 227, 234; transition from 10 stigmatization 122–3, 137, 247 Stolper, Alexander 77 Story of a Real Man (novel and film) 80 The Story of Asya Klyatchina (film) 90 Stubbs, P. 236 Sukhov, Aleksei 50 The Sun Shines for Everybody (film) 80 Sushkevych, Valery 170 symbols, disabled characters as 93 Tajikistan 206–7, 212, 218 Talankin, Igor 85

274

Index

‘target firms’ (in Hungary) 123 Tarkovsky, Andrey 89–90 ‘Taylorization’ of disability 69 Thomas, P. 184–5 Thomson, R.G. 156 Thornton, J.A. 108 Titchkosky, T. 152 Tomova, I. 141 transition economies 10 Turkmenistan 207, 213–21 Ukraine 10, 13, 165–80, 188 Unfinished Novel (film) 80 United Nations: Convention on the Rights of the Child 233; Convention on the Rights of Persons with Disabilities (UNCRPD) 8, 104, 187, 211, 216, 220–1, 232, 254; Decade of Disabled Persons (1983–92) 87, 187; Educational, Scientific and Cultural Organization (UNESCO) 261; human rights treaties 210; Standard Rules on the Equalization of Opportunities for Persons with Disabilities 232–3 user-oriented approach to services for the disabled 228 Uvin, P. 209 Uzbekistan 185, 207, 212–14, 217–21 Vaisman, Veniamin B. 27 Verdery, K. 178 Vertov, Dziga 73

Verzhbilovskiy, P. 72 visual arts and visual culture 67–8, 87, 92–3 visual representations of disability 79, 84, 87, 93; see also films: portrayal of disability in Vladimir Prosthetics Workshop 55–6 voucher systems in education 262–3 Vved’enskiy, B.A. 191 Wagener, H. 234 Wahl, O.P. 108 ‘welfare employment’ 191–9; definition of 191 ‘welfare hierarchy’ in the Soviet Union 18–19, 32 What Happened by the Sea (film) 91–2 White, Anne 10 Whose Pain is It? (film) 87–8 work ethic 186–7, 198 workfare schemes 13, 185, 197 World Bank 230–1, 234–5 World Health Organization (WHO) 98–100 Wrathall, M. 159 Yanukovych, Viktor 180 Young, I.M. 159 Youngblood, D.J. 77, 80 Yugoslavia 227 Yushchenko, Viktor 170, 180 Zhisheva, Nina 145–53, 159