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Democratic Justice for Brazilians with Impairments

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Democratic Justice for Brazilians with Impairments DEMOCRATIC JUSTICE FOR BRAZILIANS WITH IMPAIRMENTS Lyusyena Kirakosyan Dissertation submitted to the faculty of Virginia Tech in partial fulfillment of the requirements for the degree of Doctor of Philosophy In Social, Political, Ethical and Cultural Thought Max Stephenson Jr., Committee Chair James Dubinsky Kathleen Jones Wolfgang Natter March 19, 2013 Blacksburg, VA Keywords: social justice, disability, impairment, democracy, social policy, Brazil Copyright © 2013 Lyusyena Kirakosyan DEMOCRATIC JUSTICE FOR BRAZILIANS WITH IMPAIRMENTS Lyusyena Kirakosyan ABSTRACT For decades, Brazilians with impairments have not been able to enjoy full citizenship rights because of the existing oppressive structures in their society. This study examines comprehensions of justice for citizens with impairments in Brazil and what the implications of those perspectives may be for policy arguments and for social change. The principal sources of these justice-related outlooks are three key stakeholder groups: policymakers, disability nongovernmental organizations (NGOs) and people with impairments. The analysis is organized as follows. First, I provide an overview of the study, its aims and significance and research questions. Second, I discuss the theoretical foundations of the inquiry, focusing on debate among democratic theorists on the meaning of citizenship and social theorists on the significance and goals of social justice, as well as the key debates among disability theorists on the purport of disability, oppression, emancipation and social inclusion. Next, I describe the research design and methods employed in this effort, explaining the rationale behind my choice of a qualitative approach and offering details concerning the study‘s data collection, analysis and interpretation. Fourth, I summarize the issues and tensions implicit in Brazil‘s practices and institutions as these relate to the nation‘s disabled citizens. Fifth, I discuss the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which has helped an already growing social movement in Brazil formalize and legitimate its aims and place disability justice on the national agenda. Sixth, I explore the major conceptions of justice expressed by disability NGOs and analyze what these views suggested for efforts to secure full citizenship for the disabled in Brazil. Next, I explore the conceptions of impairment, disability and justice as imagined and lived by Brazilians with impairments. Specific ideas and conceptions of disability informed the understandings of justice of the individuals with impairments whom I interviewed. Finally, I provide an interdisciplinary interpretation of the research findings, in which I create a dialogue among different perspectives in order to outline a new understanding of justice for people with impairments and the social change needed to reach that aspiration. After discussing the insights of different stakeholders on justice, I share my recommendations for further research. Keywords: social justice, disability, impairment, democracy, social policy, Brazil. iii Dedication For Mauricio iv Acknowledgements This dissertation would not have been possible without the support, dedication and expertise of a large number of people. While working on this study has generally been thrilling and deeply satisfying, the many challenges along the way often tested my determination. I want to acknowledge and express my deep gratitude to the community of scholars, librarians, activists and colleagues, who nurtured my spirit, advised me through this journey and inspired me to move this work forward. I cannot name all of you here, but I am grateful to all of you for your kind support and assistance. I wish particularly to thank Max Stephenson Jr., James Dubinsky and Kathleen Jones at Virginia Tech and Wolfgang Natter at St. Bonaventure University for encouraging this project from the very beginning. Dr. Stephenson has been a supportive and inspiring advisor and mentor to me throughout my doctoral studies, and he has always given me great freedom to pursue independent work as well. I have been fortunate to work with Dr. Dubinsky whose warmth and willingness to engage ideas and to invest his time and his energy in improving others‘ work have been great assets to me and to many others at Virginia Tech. Dr. Natter has had an enormous impact on the present project and a lasting effect on the way that I think about interdisciplinary research and collaboration. I first formulated my thoughts and approach to this study under Dr. Jones‘ thoughtful guidance. I would also like to extend my gratitude to the disability rights advocates, the individuals with impairments and their families and friends who shared their experiences and v insights that formed the heart of this study and whose struggles have helped to promote justice in their native Brazil. Finally, I would like to thank my friends and family, particularly my son Mauricio, without whose love, dedication and support this journey would have not been completed. vi Table of Contents Page Chapter 1 - Introduction 1 Chapter 2 - Conceptual Framework 17 Chapter 3 - Research Design and Methods 52 Chapter 4 - Dimensions of Injustice toward Disabled Citizens since 72 Brazil‘s Modern Democratization Chapter 5 - Brazil‘s Disability Policy Initiatives in Light of the UN 93 Convention: Emerging Justice Discourses Chapter 6 - Justice Discourses of Disability NGOs 121 Chapter 7 - Conceptions of Justice, Responsibility and Blame 142 Chapter 8 – Conclusions and Implications for Further Research 166 Endnotes 181 References 196 Appendix A: IRB Approval & Extension Letters 216 Appendix B: List of sample interview questions: 220 disability NGO leaders Appendix C: List of sample interview questions for 223 individuals with impairments Appendix D: Consent Form Templates 226 vii Chapter 1 Introduction Involvement with disability rights among individuals who are not impaired usually arises from their having a personal tie to someone who has impairments. After almost five years working in non-governmental organizations (NGOs) concerned with disability rights, I have the honor of many such connections in São Paulo, Brazil. Most of my friends and work colleagues who are impaired are middle-class individuals with college or even graduate degrees, which is not typical of the majority of Brazilians with impairments. In general in Brazil, there is a significant overlap among impairment, disability, poverty and illiteracy, leading to weak political and social participation and reduced opportunities to improve one‘s life prospects. Besides personal connections, I am also strongly drawn to pursue issues that relate to justice and creating a better society for everyone. This dissertation‘s central concerns are social justice, democratic citizenship and disability and this introductory chapter has four primary aims. I first share my problem statement. Thereafter, I describe my research purpose and its significance. Third, I outline my research questions. Finally, I review the study‘s organization. Statement of the Problem For decades, Brazilians with impairments have been denied full citizenship rights by their country‘s broader society. Prior to recently enacted rights-based policies, a politics of assistencialism served as a rationale in Brazil for public support provided to the poor and disabled. Assistencialism was predicated on a ‗charity for the afflicted‘ mindset and produced 1 dependency among its recipients while doing little to address the root causes of inequality marginalized Brazilians confronted on an everyday basis. Entailing tutelage of marginalized citizens, the assistencialist perspective constrained their freedom to make decisions and to assume responsibility for those choices. Paulo Freire (1973) criticized this form of politics, stressing the dangerous implications of, ―the violence of its anti-dialogue, which by imposing silence and passivity denies men the conditions likely to develop or to ‗open‘ their consciousness,‖ making democracy difficult to realize because a substantial share of the nation‘s population lacked a critical voice (pp.15-16). ―Assistencialism‖ created strong resistance to advocates among disability rights in Brazil as the movement became more organized (Lanna, 2010). In light of this difficult past, the current conceptions of justice and accompanying rationales that people with impairments hold in Brazil emerge as a critical question. Since research on disability rights in Brazil is incipient (Lanna, 2010, p.12), this question demands deeper exploration. Western disability studies scholars have debated the appropriate boundaries of their domain of inquiry for many years (Linton, 1998b; Thomas 2007), the advantages and limitations of the social model of disability (Corker & French, 1999; Schillmeier, 2010; Siebers, 2001; Tremain, 2005), bioethics (Block, 1997; Scully, 2008; Tremain, 2005) and the meaning of justice for disabled people (Nussbaum, 2006; Sen, 2004). By comparison, there has been relatively little scholarly research on disability and justice in contemporary Brazilian society and such inquiry as has been undertaken typically has addressed a specific right, such as education, work conditions, accessibility or medical services.1 2 Brazilian scholars have examined the Law of Quotas (a compulsory percentage of employees with impairments applied to companies with 100 employees or more) and its effect on employers and the employability of professionals with impairments and analyzed social representations
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