http://orcid.org/0000-0002-0623-7952
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Abstract
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.
Acknowledgements
The author would like to thank Lilia Angelova-Mladenova, Ines Bulic Cojocariu and Yvo Pokern for their feedback and support at different stages of research and writing. The author would also like to acknowledge the contribution of the two anonymous referees of the journal. This document reflects only the author’s view. The Research Executive Agency of the European Commission is not responsible for any use that may be made of the information it contains.
Disclosure statement
No potential conflict of interest was reported by the author.
Notes
1 ENIL is a Europe-wide disability advocacy organisation defending the rights of disabled people to live independently and to be included in society. ENIL has strong historical roots in the independent living movement. The organisation was founded in 1989 by disabled activists including Ratzka (Citation1993) and Evans (Citation2002), who recounts: ‘The founding of the European Network on Independent Living, ENIL was one of the most significant events in Europe for the Independent Living Movement. ENIL was founded in 1989. It started when over 80 disabled people, most of whom were personal assistance users, from 14 different European countries, congregated at the European Parliament in Strasbourg to discuss issues of concern on Independent Living. This ended up being an historic event because the main outcome of this meeting of minds was the establishment of ENIL and hence for the first time there was a co-ordinated approach for Independent Living at a European level’ (Evans Citation2002, 13–14). Since then, ENIL has been at the forefront of campaigning and research on user-led PA and many of ENIL’s members share this commitment. The organisation’s work is based on the principles of solidarity, peer support, self-representation, cross-disability and self-determination.
2 In the period 2000–2009, the researcher worked on a contractual basis for the Centre for Independent Living – Sofia, a disabled people’s advocacy organisation that has been campaigning for disability rights in Bulgaria since mid-1990s.
3 The medical-productivist (Mladenov Citation2011) determination of disability as ‘decreased ability to work’ on the basis of clinically identifiable impairment(s) is problematic even on its own terms, because ‘in an important way it sidesteps the key issue of disability: what is it that prevents people from working? In most instances, the cause is not some identifiable physical phenomenon but a complex set of interacting factors involving individual and family history, the state of the economy, and cultural and psychological as well as biological factors’ (Stone Citation1984, 134).
4 The PA Checklist was piloted while the present article was undergoing review. The report on the pilot application of the checklist is available online (https://enil.eu/wp-content/uploads/2019/02/Mladenov_Pokern_Bulic-PA_Checklist.pdf).