Stigma Toward People with Disabilities in Poland and Its Effects On
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STIGMA TOWARD PEOPLE WITH DISABILITIES IN POLAND AND ITS EFFECTS ON SOCIAL INTEGRATION AND POLICY IMPLEMENTATION by MIRJAM HOLLEMAN MARYSIA GALBRAITH, COMMITTEE CHAIR JASON DECARO, COMMITTEE CO-CHAIR KATHRYN OTHS NIRMALA EREVELLES SONYA PRITZKER WILLIAM DRESSLER A DISSERTATION Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of Anthropology in the Graduate School of The University of Alabama TUSCALOOSA, ALABAMA 2019 Copyright Mirjam Holleman 2019 ALL RIGHTS RESERVED ABSTRACT The European Union (EU) recognizes the social integration of people with disabilities in society as an economic necessity and fundamental human right. However, not all countries in the EU are equally successful at realizing their goals. Assessing the social integration of people with disabilities in an intra-culturally valid yet cross-culturally replicable and comparative manner is a crucial yet challenging tasks for policy makers. Studies show that stigma interferes with the successful implementation of public policy and hinders the social integration of people with disabilities. This study employs mixed methods research to investigate stigma toward people with disabilities in Poland in an ethnographically rich, socially and historically contextualized way. Using a novel approach to existing methods in the field of cognitive anthropology, this research furthermore provides a quantitative and comparative assessment of this stigma in order to demonstrate how this population is socially integrated, versus stigmatized, in the mental-maps of different segments of Polish society. Ethnographic methods and discourse analysis reveal a tension in Polish society between “modern” pro-EU and neo-liberal values and “conservative” nationalistic community orientations. Using consensus analysis and residual agreement these complex social relations were strategically narrowed into measurable units of analysis. My sample of Polish respondents reflect a similar ideological split that was observed in Polish society through my ethnographic data and described in recent literature about Poland. Correlations between cultural values and expectations toward people with a physical disability reveal how diverging ideological views held by different segments of Polish respondents affect the degree to which the differently-able ii are integrated in the mental maps of non-disabled citizens. Quantitative results are linked back to broader historical process and current social debates concerning the role and responsibility of individual citizens and of the state, as well as the interwoven social question of “what to do with the disabled,” in post state socialist Poland. I describe how this study may be replicated and how quantitative measures of social integration or stigma, in the form of Pearson correlations, may be compared across cultures. iii LIST OF ABBREVIATIONS ANED Academic Network of European Disability experts df Degrees of freedom EU European Union PFRON Państwowy Fundusz Rehabilitacji Osób Niepełnosprawnych (The National foundation for the rehabilitation of people with disabilities) PiS Prawo i Sprawiedliwość (Law and Justice) PO Platforma Obywatelska (Civic Platform) UNCRPD United Nations Convention on the Rights of People with Disabilities iv ACKNOWLEDGEMENTS I want to thank the University of Alabama department of Anthropology for modeling an integrated community of cultural anthropologists, linguistic anthropologists, cognitive anthropologists, physical anthropologists, and archeologists. Working in this environment allowed me to adopt an integrated mixed-methods and interdisciplinary approach in my research when, apparently, utilizing such an approach remains unique and valuably rare in the field of anthropology and the (social) sciences in general. To the members of my committee: Thank you for introducing me to linguistic anthropology, Dr. Pritzker; to cognitive anthropology, Dr. Dressler; to theory and methods in medical anthropology, Dr. Oths; to disability studies, Dr. Erevelles; to Poland and European studies, Dr. Galbraith; and to physical anthropology, mixed methods and a holistic perspective, Dr. DeCaro, and the rest of my committee. All of your work has significantly influenced my own thinking and academic pursuits. I want to extend an extra “thank you” to my main advisor, Dr. Marysia Galbraith for the hours spent reading and providing valuable feedback, insights, and edits to various chapters and drafts of the dissertation. You have shown me that you really care about this project and want me to do well. Everyone on my committee has conveyed to me in one way or another that I was not alone in this project. I am thankful to have had all of you on my team. Thank you to my cohort and colleagues in the department of anthropology, who have all been wonderful, helpful, and encouraging. I want to especially thank Nikki Henderson, for helping me understand residual agreement analysis. Without her I do not know if I would have v found, or even looked, for intracultural variation in my quantitative data. Thank you to the people, besides my committee members, who proofread parts or all of my dissertation and offered encouragement along the way: Peter Holleman, Lisa Heida and Nancy Dupree. To my friends and participants in Poland – thank you for sharing your stories and perspectives with me. Your valuable insights have not only shaped this project, but also helped me grow as a person, z całego serca, dziękuję. And last but not least, I want to thank my parents, Nico and Ineke Holleman and my sister and brother, Esther and Peter, as well as all my aunts and uncles, cousins and grandparents for always believing in me and supporting me in whatever wild adventures I had in mind, such as starting a PhD far away from home in Alabama. vi CONTENTS ABSTRACT .................................................................................................................................... ii LIST OF ABBREVIATIONS ........................................................................................................ iv ACKNOWLEDGEMENTS ............................................................................................................ v LIST OF TABLES ....................................................................................................................... xiii LIST OF FIGURES ..................................................................................................................... xiv LIST OF ILLUSTRATIONS ........................................................................................................ xv PREFACE ....................................................................................................................................... 1 CHAPTER ONE: INTRODUCTION ............................................................................................. 4 The Anthropological Gaze .......................................................................................................... 7 Autoethnography and Activist Anthropology ............................................................................. 8 Overview of Chapters ............................................................................................................... 10 A Note on Terminology. How I am Applying the Concept of “Disability” ............................. 15 CHAPTER TWO: DISABILITY IN THE EUROPEAN UNION - AIMS AND PROGRESS ... 18 Problem Statement .................................................................................................................... 18 The Goals and Agreements ....................................................................................................... 19 Monitoring Specific Actions and Achievements ...................................................................... 24 vii Anthropology Problematizes .................................................................................................... 24 The EU Definition of Disability ............................................................................................... 26 Previous Methods of Measuring Attitudes toward Disability ................................................... 27 Aims of Research ...................................................................................................................... 29 CHAPTER THREE: THE MANAGEMENT OF DISABILITY ................................................. 32 Anthropological Investigations into the Making of Disabled Citizens ..................................... 32 Disability Assessments in the EU ............................................................................................. 39 Disability Assessment in Poland ............................................................................................... 42 Disability Benefits and Management in Poland. The Good Intentions .................................... 45 The Reality ................................................................................................................................ 49 Theory and Concluding Remarks ............................................................................................. 51 CHAPTER FOUR: THEORETICAL FRAMEWORK ................................................................ 54 Goffman’s Theory of Stigma .................................................................................................... 54 Theoretical Approaches to Disability ......................................................................................