Teodor Mladenov
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Independent Living, deinstitutionalisation, and personal assistance
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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.

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