Philosophy and Critical Theory

The concluding chapter revisits the book’s key arguments. Independent Living has been approached as an evolving, contextually inflected, organic epistemology, preserved and developed in the work of activist organisations like ENIL. This epistemology has rendered independence not in terms of self-sufficiency but in terms of self-determination underpinned by specific relations of interdependence (identified in the book as ‘egalitarian care’). The book has analysed how the ensuing intellectual and policy agenda has clashed with all three organising principles of social welfare – with the market under liberal and postsocialist residualism; with the state under social democratic and state socialist welfarism; and with the family under conservative and postsocialist traditionalism. In all these clashes, the Independent Living movement has sought to overcome the hermeneutical marginalisation of disabled people in defining key terms such as independence. These multiple lines of contestation suggest that Independent Living is a transformative rather than affirmative approach to injustice. Towards the end of the chapter, several issues likely to shape the future of this effort at social transformation are identified. The mainstreaming of the UN Convention on the Rights of Persons with Disabilities has already started to intensify definitional struggles and this trend is expected to continue. Other global challenges include housing crises, poverty, inequality, transnational migration, and creeping retraditionalisation. In response, Independent Living campaigning and analysis are likely to become increasingly intersectional and transnational. Finally, it is argued that the critique of capacity is likely to take centre stage, strengthening the movement’s conceptual coherence and inclusiveness.

Chapter 1 introduces two key terms – ‘disability’ and ‘independence’ – from the perspective of disabled people’s definitional struggles and by mobilising the critical-theoretical concepts of ‘epistemic injustice’ (with reference to Miranda Fricker’s work), ‘politics of need interpretation’, and ‘juridical–administrative–therapeutic state’ (with reference to Nancy Fraser’s work). The struggles for the meaning of disability are recounted, with a focus on the social model of disability, its significance for disability studies and organising, its critiques, and its impact on the international disability rights agenda, as epitomised by the UN Convention on the Rights of Persons with Disabilities. The chapter explains the implications of the social model’s shifting of attention from the individual to society in disability policy, advocacy, and theory. The discussion then turns to the struggles for the meaning of independence, which are explored by considering critically the definitional efforts of prominent Independent Living actors. It is argued that Independent Living – in a paradigm shift complementary to the social model – has transformed the understanding of independence from liberal-individualist self-sufficiency to freedom-maximising interdependence. To understand the implications of this transformation, self-sufficiency is explored with reference to Kant’s political philosophy. Both the social model’s reframing of disability and Independent Living’s reframing of independence are presented as examples of striving for epistemic justice and engaging with the politics of need interpretation. The chapter ends with a proposal for a productive alignment between the social model and the Independent Living paradigm towards combining structural-collectivist with relational-autonomist strategies in disability policy, advocacy, and theory.

Chapter 2 builds on the ideas discussed in Chapter 1 by introducing the European Network on Independent Living (ENIL), a major Independent Living actor in Europe and beyond. ENIL’s work is considered in significant historical, operational, and organisational detail by exploring the network’s democratic constitution, its adherence to the ‘nothing about us without us’ principle, its efforts at mediating between the policy makers and the grassroots, and the related issues of political representation. ENIL’s own definition of ‘Independent Living’ is then analysed in depth to complement the foregoing analysis of Independent Living’s intervention in the hermeneutics of independence. ENIL’s definitional efforts are studied as a prominent example of challenging the conventional, liberal-individualist understanding of independence as self-sufficiency. In its stead, the organisation has promoted an alternative concept, according to which independence means that one has choice and control in one’s everyday life, including choice and control over one’s support. The chapter also highlights ENIL’s intersectional turn, linking it to contemporary trends in disability advocacy and critical disability studies scholarship. On this basis, it is argued that ENIL has advanced epistemic justice with and for disabled people by asserting the meanings elaborated within the Independent Living paradigm and the social model of disability in a context of continuing hermeneutical marginalisation perpetuated by disabling societies, service providers, and caring professionals. In addition to critical-theoretical analyses of disability and independence, the account of ENIL’s work in Chapter 2 contributes to the efforts at creating an archive of disabled people’s intellectual production and activism.

Chapter 7 expands the critical-theoretical scope of the book. It begins with a critique of capacity that targets liberal-individualist and cognitivist versions of autonomy. Independent Living’s contribution to this critique is in highlighting the socially constructed nature of mental capacity – a position underpinning ENIL’s advocacy for supported decision making as an alternative to substitute decision making (guardianship) in policies concerning people with intellectual impairments. The chapter then focuses on critique of coloniality, and particularly on the perception of Independent Living as ‘colonial’ due to its North American origins and its convergence with neoliberalism. In response, it is argued that the structural-collectivist understanding of Independent Living embraced throughout the book and grounded in the work of ENIL opens up a space for reconciliation between decolonial disability studies and Independent Living. Similar issues are then explored from the opposite angle – by considering critique of decoloniality, and particularly criticisms of the Global North versus Global South binary. The author’s postsocialist experience in the Centre for Independent Living–Sofia is provided as evidence of indigenising Independent Living beyond the North versus South divide. The chapter finishes with a critique of technology. Having access to assistive devices is a pillar of Independent Living, but both assistive and mainstream technology can be (and often are) ableist and exploitative. To grasp this ambivalence, the chapter makes recourse to the concept of pharmakon (drawing on Bernard Stiegler) and the work of the ‘new materialists’ in social sciences. The discussion ends with a call for democratisation and decolonialisation of the design of enabling ‘things’.

Chapter 5 explores the relationships between Independent Living and the family as the third organising principle of social welfare, alongside the state and the market. Thus, if Chapter 3 focused on state-based biopower, and Chapter 4 on market-based psychopower, Chapter 5 discusses family-based parental power. The main argument is that Independent Living has promoted qualified defamilialisation that has resonated with the movement’s advocacy for qualified deétatisation (Chapter 3) and qualified decommodification (Chapter 4). To explain this, the first part of the chapter revisits the welfare regimes explored so far by discussing the role of the family in each of them, as well as the specific responses of the Independent Living movement to the corresponding versions of familialism. This is followed by a discussion of the links between gender equity and Independent Living, approached through a study of recent parental mobilisations for disability rights in postsocialist Central and Eastern Europe. Following Nancy Fraser, three different models of gender equity are identified: universal breadwinning, caregiver parity, and universal caregiving. The analysis reveals that Independent Living is commensurate with universal caregiving and the attendant ‘demotherisation’ of welfare, but also that universal caregiving needs to be complemented by universal care-receiving to enable egalitarian (as opposed to paternalist) care. In conclusion, the approach of Independent Living to the family is identified as one of challenging parental power and familialism while affirming familial support and relationships. Independent Living is thus about living in families of self-determining equals, in concert with the concept of egalitarian care.

Chapter 4 explores the relationships between Independent Living and the market, focusing on neoliberal thought and practice as epitomes of contemporary marketisation. The central argument of the chapter is that Independent Living’s deétatisation-enabling critique of professional power, biopower, and the juridical–administrative–therapeutic state has converged with neoliberalisation only partially and superficially, while diverging at a deeper level. The chapter begins by discussing the impact of neoliberal marketisation on the welfare regimes outlined so far and the implications of this for Independent Living advocacy. Special attention is paid to the neoliberalisation of subjectivity, as reflected in internalising market-based demands for self-enhancement and productivity (auto-exploitation). The chapter proceeds by considering these features of our neoliberal present as integral to the historical transition from biopower to psychopower and from ‘societies of discipline’ to ‘societies of control’, drawing on the work of Gilles Deleuze, Bernard Stiegler, and Byung-Chul Han. This account helps identify more clearly some of the convergences between Independent Living and neoliberalism, but also outlines how Independent Living has diverged from neoliberalisation. Independent Living’s discord with neoliberal psychopower and productivist control is identified in the movement’s preference for quasi-marketisation (as opposed to radical marketisation), embrace of self-determination (as opposed to self-enhancement and auto-exploitation), and promotion of egalitarian, peer-based collectivism (as opposed to liberal individualism). These points are evidenced by studying the ‘technologies of the self’ in a prominent model of personal assistance described by the Independent Living pioneer Adolf Ratzka.

Chapter 3 explores the relationships between Independent Living and the welfare dimension of the state. These relationships are conceptualised in terms of a critique of professional power deployed in conjunction with a defence of public support (decommodification) and affirmation of interdependence. In turn, professional power is approached in terms of biopower (drawing on Michel Foucault’s critical theory), and more specifically of the biopower realised within the postwar juridical–administrative–therapeutic state and manifested in the power of caring professionals over disabled people’s lives. The understanding of Independent Living as critique of professional power reveals the movement’s affiliations with anti-psychiatry, critiques of medicalisation, sociologies of total institutions, and radical/critical social work. This understanding also illuminates Independent Living’s scepticism towards discourses of ‘care’ and ‘ethics of care’. The attendant (partial) convergence between Independent Living and neoliberalisation is acknowledged, but the claims that the movement can be reduced to a neoliberal assault on the welfare state are rejected (an argument fully developed in Chapter 4). Instead, Independent Living’s critical interrogation of the welfare state, biopower, and ‘care’ is considered as a strategy of individual emancipation that negates neoliberal self-sufficiency and advances a complex affirmation of interdependence. To conceptualise this complexity, a distinction between ‘paternalist care’ and ‘egalitarian care’ is proposed. These considerations are then grounded in a discussion of welfare regimes (with reference to the work of Gøsta Esping-Andersen and its critical responses). Thus, Independent Living’s critique of professional power is contextualised by exploring the movement’s interactions with liberal, social-democratic, conservative, state socialist, and postsocialist welfare states.

Chapter 6 revisits the work of the European Network on Independent Living (ENIL) by discussing the organisation’s advocacy for deinstitutionalisation and personal assistance in the light of the theoretical discussions from the preceding three chapters. It begins with an overview of deinstitutionalisation reforms in Europe, comparing the intended shift in thought and practice to prison abolition (with reference to the work of Liant Ben-Moshe). ENIL’s campaigning for deinstitutionalisation is then discussed as an expression of the organisation’s struggle for epistemic justice (Chapter 2) because a major barrier to deinstitutionalisation in Europe has been the misuse of the term to justify renovating existing institutions or building smaller ones – ‘reinstitutionalising deinstitutionalisation’. Consequently, the struggle for the meaning of deinstitutionalisation has been at the centre of ENIL’s advocacy. The chapter proceeds by exploring ENIL’s campaigning for personal assistance that has complemented its campaigning for deinstitutionalisation. Promoting personal assistance has also included epistemic struggles – this time concerning the meaning of ‘personal assistance’ – and has underpinned ENIL’s criticisms of ‘institutionalisation at home’ engendered by misusing the term ‘personal assistance’ to signify inadequately resourced, professionals-led, and/or familialist forms of support. Ultimately, the analysis suggests that the hermeneutical marginalisation of the Independent Living activists has made it possible to present confinement in institutions or at home as forms of community-based support for self-determination. The study of ENIL’s work also testifies that Independent Living advocacy does not seek to substitute biopower (Chapter 3) with psychopower (Chapter 4) but to enable genuine emancipation.

The introductory chapter sets the stage by stating the book’s main argument – that the disabled people’s Independent Living movement helps understand freedom as a specific form of interdependence. It is claimed that this makes Independent Living a powerful approach for critical theorising on freedom/independence. The author then discusses his positionality by recounting some formative encounters with professional power and its critiques during the early years of Bulgarian postsocialism. The chapter proceeds by exploring the disciplinary foundations of the book through a discussion of the tensions and synergies between critical theory, (postsocialist) disability studies, and disability activism. This is followed by a brief history of Independent Living, from the mobilisations of disabled activists in the United States in the 1960s, through the struggles of the European pioneers and the founding of the European Network on Independent Living in 1989, to the current global spread of the movement. Independent Living is then considered as a theory rooted in practice. It is understood as an organically emerging wisdom about the supports and accommodations needed for the everyday exercise of freedom/independence and conceptualised by activists as the ‘pillars of Independent Living’. The discussion synthesises without being totalising – internal tensions within the movement are also highlighted. The chapter finishes with a summary of the key arguments and contributions of the book, complemented by an overview of the subsequent chapters.