Teodor Mladenov

This chapter explores the efforts of disabled people’s independent living movement to negotiate the meaning of independence. It focuses on the work of the European Network on Independent Living (ENIL) – a user-led, user-controlled initiative of disabled people and independent living organisations that has led the fight for independent living in Europe since 1989. I conceptualise ENIL’s monitoring of the implementation of Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) as a struggle for hermeneutical justice. ENIL has challenged the conventional understanding of independence as self-sufficiency. This conventional understanding has undermined disabled people’s right to live independently and be included in the community. In its stead, ENIL has promoted an understanding of independence stemming from the independent living movement and incorporated in Article 19 of the CRPD. According to this alternative understanding, independence means that one has choice and control in one’s everyday life, including choice and control over one’s support – rather than coping without support. This alternative understanding of independence has guided ENIL’s monitoring of deinstitutionalisation reform and personal assistance schemes in Europe that are discussed in the chapter as instances of disabled people’s organised collective struggle for hermeneutical justice.

This chapter explores the efforts of disabled people’s independent living movement to negotiate the meaning of independence. It focuses on the work of the European Network on Independent Living (ENIL) – a user-led, user-controlled initiative of disabled people and independent living organisations that has led the fight for independent living in Europe since 1989. I conceptualise ENIL’s monitoring of the implementation of Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) as a struggle for hermeneutical justice. ENIL has challenged the conventional understanding of independence as self-sufficiency. This conventional understanding has undermined disabled people’s right to live independently and be included in the community. In its stead, ENIL has promoted an understanding of independence stemming from the independent living movement and incorporated in Article 19 of the CRPD. According to this alternative understanding, independence means that one has choice and control in one’s everyday life, including choice and control over one’s support – rather than coping without support. This alternative understanding of independence has guided ENIL’s monitoring of deinstitutionalisation reform and personal assistance schemes in Europe that are discussed in the chapter as instances of disabled people’s organised collective struggle for hermeneutical justice.

This article discusses the relationships between three concepts that are key for contemporary disability policies: social model of disability, independent living, and care. The first part explores the impact of the social model and independent living on the UN Convention on the Rights of Persons with Disabilities, as well as the conflict between the social model and independent living, on the one hand, and the idea of ‘care’, on the other. This conflict is addressed by making recourse to studies of the ‘ethics of care’ and by introducing a distinction between ‘paternalist care’ and ‘egalitarian care’. In the second part of the article, these concepts are used in an analysis of contemporary Bulgarian disability policies. This includes a critique of the barriers to the independent living faced by disabled people in Bulgaria, and more specifically, of the continuing institutionalization of disabled Bulgarians, the lack of adequate personal assistance, the difficulties with providing access to inclusive education for disabled children, and the medical assessment of disability. The conclusion emphasizes that the approach of ‘paternalist care’ still dominates in Bulgarian disability policies. This significantly complicates the attempts to apply the ‘ethics of care’ in the Bulgarian context in a way that affirms disabled people’s rights.

This chapter discusses the combined impact of state socialist legacies and postsocialist neoliberal transformations on the intersections of gender, sexuality, and disability in present day Central-Eastern Europe (CEE). Using a critical and intersectional perspective, it is argued that elements of the state socialist heritage have interacted with features of postsocialist neoliberalization to enhance the oppression of women, homosexual, and disabled people in CEE. Emphasizing continuity rather than historical rupture, the main part of the analysis looks at the ways in which state socialist productivism, biological reductionism, and institutional confinement have been modified (rather than negated) by welfare state retrenchment, retraditionalization of society, and creeping marketization in the aftermath of 1989. The chapter also examines how individuals and communities have actively responded to and resisted resultant oppressions.

In this chapter, my analysis of disability assessment under state socialism is guided by the following more general question: how was the state socialist project reflected in the regime’s understanding of disability and in what ways was this understanding a constitutive and organising element of the state socialist project? To answer this question, I explore the approach to disability assessment developed in the Soviet Union in the 1930s and subsequently used as a “blueprint” that shaped disability policy in state socialist Bulgaria from the 1950s onwards. In terms of methodology, I analyse “official” disability discourses contained in “insider” accounts – documents produced by social policy experts who lived the Soviet and Bulgarian state socialist systems.

This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

This report presents the results of a pilot application of the PA Checklist – a new tool designed for assessing personal assistance (PA) schemes from the perspective of independent living. The checklist was created at the European Network on Independent Living (ENIL) to help advocates around the world to fight for better PA and to monitor the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities. It was developed as part of the project ‘User-Led Personal Assistance in the European Union: A Critical Comparative Analysis’, led by Dr Teodor Mladenov. The PA Checklist was co-produced with PA users and independent living advocates to measure the degree to which PA schemes support independent living.

This article explores critically the relationship between capitalist performativity and the disability category. It draws on Jean-François Lyotard's analysis of postmodernity to define 'performativity' as the principle of performance enhancement governing the world of contemporary techno-capitalism. The analysis then traces the historical development of the disability category in the 20th and 21st centuries and explains its complex interlinking with performativity. Special attention is paid to the impact of neoliberalism since the 1980s that includes both the disability category's administrative shrinking and its market-based expansion. These theoretical and historical reflections are supplemented by a reading of Terry Gilliam's movie The Zero Theorem. The conclusion discusses some possibilities for resisting performativity, suggested by the disability studies perspective espoused in the article.

This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

This paper explores injustices experienced by disabled people in the postsocialist countries of Central and Eastern Europe. Drawing on Nancy Fraser’s theory of social justice, the analysis proposes a ‘matrix’ that reveals the negative impact of two factors – state socialist legacy and postsocialist neoliberalization – on disabled people’s parity of participation in three dimensions of justice – economic redistribution, cultural recognition, and political representation. The legacy of state socialism has underpinned: segregated service provision; medical-productivist understanding of disability for assessment purposes; denial of disability on everyday level; and weak disability organizing. Neoliberal restructuring has resulted in: retrenchment of disability support through decentralization, austerity, and workfare; stigmatization of ‘dependency’ through the discourse of ‘welfare dependency’; responsibilization of disabled people; and depoliticization of disability organizations by restricting their activities to service provision and incorporating them in structures of tokenistic participation. The analysis is informed by reports and academic studies of disability in the postsocialist region.

This paper brings together concepts from the domains of disability studies, governmentality studies and Actor-Network Theory in order to develop a micro-level analysis of a scheme for the provision of personal assistance for disabled people, currently administered by the Sofia Municipality in Bulgaria. The workfare conditionality embedded in the scheme’s needs assessment procedure is highlighted and subjected to critique. The micro-level analysis is deployed on the background of wider, macro-level observations concerning the neoliberal mode of government and its relations to subjectivity and freedom. The conclusion suggests practical policy alternatives in line with the Independent Living philosophy and practice.

The marketisation of public services has been widely discussed by social policy analysts, but what is seldom emphasised in such reports is that this process incorporates a contradiction. On the one hand, marketisation has facilitated welfare state retrenchment, thus enhancing inequalities through maldistribution. Yet, on the other hand, marketisation has helped to bring about emancipation from top-down expertise and the paternalism of welfarist service provision. This contradiction between creating and dismantling hierarchies comes sharply in view in the mechanism of 'direct payments', whose increasing salience amidst austerity-driven reforms of UK social policy calls for a critical examination.

This article criticizes the negative impact of productivism on disabled people of working age in the postsocialist region of Central and Eastern Europe. Productivism is conceptualized as a mechanism that generates cultural and material invalidation of those considered to be unable to work. The analysis begins by outlining some political-economic features of state socialism that underpinned its productivism, emphasizing commodification of labor. It proceeds by discussing the ensuing approach to social policy, comparing it with two alternative models. Afterwards, it highlights several ways in which productivism shaped disability policy in the countries of the former Eastern Bloc. Finally, the analysis looks at present-day disability policy in the postsocialist region. It is argued that after 1989, the state-based productivism of the socialist regime was partially complemented and partially displaced by the market-based productivism of the new neoliberal regime. The conclusion discusses strategies for resisting productivism, focusing specifically on decommodification of labor.

Online at: http://crs.sagepub.com/content/early/2015/08/12/0896920515595843.abstract

This paper discusses the impact of neoliberalism on disability policy and activism. The paper highlights the neoliberalisation of postsocialist disability policy, as well as the convergence between the neoliberal critique of welfare-state paternalism and the advocacy of disabled people’s movement for deinstitutionalisation and direct payments (personal assistance). The discussion is supported by examples from Bulgaria and the United Kingdom. In conclusion, the paper argues that neoliberalism confronts the disabled people’s movement with two difficult tasks: to defend self-determination while criticising market-based individualism, and to defend the welfare state while criticising expert-based paternalism.

In the aftermath of the financial crisis of 2008, disabled people in the UK have been hit disproportionately hard by austerity. Austerity measures have had a strong impact on economic redistribution, but also on disabled people’s cultural recognition and political representation.

This paper explores the silence surrounding disabled people’s sexuality in contemporary, postsocialist Bulgaria. The related desexualisation of disabled people is regarded as an instance of disablism that is sustained through medicalisation, patriarchal stereotypes and negative understandings of the bodily difference of ‘impairment’. The analysis draws on disability studies and phenomenology in order to elicit the workings of these mechanisms in everyday discourse as represented by an autobiographical essay and an internet discussion. A number of strategies for challenging disablist desexualisation are also highlighted whose point of departure is breaking the silence on the topic of disabled people’s sexuality.

This paper explores the United Nations Convention on the Rights of Persons with Disabilities (CRPD) from a phenomenological perspective. It argues for complementing the predominant juridical approach to the CRPD with attention to the extra-juridical dimension of the constitution of its meaning. The core argument is that disabled people’s collectives should be recognised and admitted as important stakeholders and contributors in the community of interpretation that gives the CRPD its meaning. After briefly introducing the CRPD, the first part of the paper highlights the ubiquity of interpretation and the limits of its juridical regulation. The second part explores some extra-juridical factors that influence the interpretation of the CRPD. Two cases are considered: the socially embedded materiality of the interpretive work of the CRPD Committee; and the politics of interpretation inherent in the CRPD’s translation between languages. The latter is backed up by comparing the English, French, Russian and Bulgarian versions of several CRPD provisions. In conclusion, some methodological and programmatic inferences are drawn from the analysis. In particular, it is argued that disabled people’s civic self-organising is indispensable for sustaining the interpretation of the CRPD along transformative and emancipatory lines.

This paper uses phenomenology to explore recent representations of inaccessible architectural environment featured on major Bulgarian television channels. It is argued that by exposing the environmental restrictions faced by disabled people in their everyday activities, Bulgarian media unwittingly engage in an operation described by formalist literary critics as ‘defamiliarization’. As a result, familiar elements of the everyday, lived world are illuminated as strange. In phenomenological terms, this brings about the experience of ‘uncanniness’. The paper concludes by highlighting the transformative potential inherent in this experience; that is, its power to illuminate as artificial and oppressive the taken-for-granted aspects of the world we inhabit.

This paper explores personal assistance – a practice considered crucial for supporting the independence and social inclusion of disabled people. The starting point of the analysis is the presumption that the significance of personal assistance goes well beyond welfare, touching upon existential-ontological issues. In order to uncover these issues, a phenomenological approach is used. The aim is to highlight the understanding of human being which is mediated by an internationally prominent model of personal assistance, to wit, the one promoted by the European Independent Living advocates, as described by Adolf Ratzka (2004a). It is argued that despite its liberal-individualist assertions the scheme described by Ratzka presupposes a distributed, relational understanding of human being. A case study of recent disability-related activism in Bulgaria is developed in order to further substantiate this claim. In conceptual terms, then, the paper adds a fresh perspective to the debates on individualist vs. collectivist approaches to disability equality. This perspective is informed by the phenomenological insights of Martin Heidegger and Maurice Merleau-Ponty. In policy terms the paper argues for the necessity of promoting and supporting disabled people’s self-organizing, most importantly peer support and advocacy activities.

On the 19th of July, 2008, a group of young disabled visitors (wheelchair users) were expelled from the Troyan Monastery in Bulgaria by the hegumen of the monastery with the stipulation that ‘obviously you pay for others’ sins, since you are like this’. Two years later the Bulgarian Commission for the Protection against Discrimination found the hegumen guilty of harassment on the basis of disability. In this paper I analyse the Commission’s decision from a phenomenological perspective. I draw on Heidegger’s existential phenomenology and also on concepts borrowed from the domain of Science and Technology Studies. I explore the existential-ontological patterns that are implicitly at work in the event as recounted in the Commission’s decision. Thus, a spatio-temporal distribution of human beings according to a rigid interiority/exteriority logic is identified. This spatio-temporal pattern is informed by an understanding of space that prioritizes proximity, and by an understanding of time that prioritizes permanence. The interiority/exteriority division, on its behalf, is sustained by a highly contested ‘boundary-work’, in which different non-human entities are recruited as mediators.

This paper analyses disability assessment, conceived as a dominant way of assigning disability status within the modern welfare state. It explores the procedure and outcome of the assessment in their intrinsic relation to defining humanness by utilising an approach which is novel for disability studies – a Heideggerian, existential‐phenomenological critique of the modern reduction of human beings to objects and/or resources. This critical philosophical framework is supported by a sociological analysis, drawing on the science and technology studies concept of ‘boundary object’. Using the legally codified disability assessment in Bulgaria as its case study, the paper nevertheless formulates broader conclusions concerning the reduction of disabled people to deficient bodies and inefficient resources, linking it to the modern domination of medicalisation and productivism. In conclusion, it proposes an alternative, holistic view of what it means to be a human being, drawing on Heidegger's notion of ‘being‐in‐the‐world’ and his critique of modernity.

This paper presents a critical study of the participation of Bulgarian disabled people’s organisations in the policy‐making process on a national level. It describes how the ‘representatives’ of disabled Bulgarians become depoliticised and even depersonalised when their participation becomes institutionalised through the National Council on Integration of People with Disabilities. It is argued that such an instance of ‘participation’ actually sustains the status quo of underdevelopment and dependency. A parallel is drawn with the concerns of the British disability movement. The paper ends by suggesting some tentative solutions to the highlighted problems.

In the decades following the collapse of state socialism at the end of 1980s, disabled people in Central and Eastern Europe endured economic marginalisation, cultural devaluation and political disempowerment. Some of the mechanisms producing these injustices were inherited from state socialism, while others emerged with postsocialist neoliberalisation.

State socialism promised social security guaranteed by the public, and postsocialist neoliberalisation promised independent living underpinned by the market. This book argues that both promises failed as far as disabled people were concerned, drawing on a wide range of scholarly reports and analyses, policy documents, legislation, and historical accounts, as well as on disability studies and social justice theory. Besides differences, the book also illuminates continuities between state socialism and postsocialist capitalism, providing on this basis a more general and historically grounded critique of contemporary neoliberalisation and its impact on individual and collective life.

The book will appeal to anyone interested in disability studies and postsocialism, as well as in social policy, social movements and critical theory. It will also be of interest to professionals involved in disability-related service provision, as well as to disability activists and policy makers.

Critical Theory and Disability explores social and ontological issues encountered by present-day disabled people, applying ideas from disability studies and phenomenology. It focuses on disabling contexts in order to highlight and criticize the ontological assumptions of contemporary society, particularly those related to the meaning of human being.

Link to the book's page on Google Books: https://books.google.co.uk/books?isbn=162892201X

Link to the book's page on Bloomsbury's website: http://www.bloomsbury.com/critical-theory-and-disability-9781628921991/

This is the text of a presentation prepared for the ‘Disability Studies in East Europe – Reconfigurations’ seminar series organised by a disability studies group at the Jagiellonian University, Poland. The seminar took place online on 27 May 2022. In the presentation, I discuss a framework for a critical and historically informed analysis of disablement in the postsocialist region of Central and Eastern Europe. The framework brings together disability studies, Nancy Fraser’s theory of social justice, and critical studies of postsocialism. This helps understand disablement in the postsocialist region in terms of intersections between state socialist legacies and postsocialist neoliberal transformations in the economic, cultural, and political spheres. Specific instances of disablement are explored, including continuing institutionalisation, retrenchment of public support, medical-productivist framing of disability, overvaluation of self-sufficiency, and depoliticisation of disability organising.