Disability Politics and Care provides a robust, critical analysis of the tensions and contradictions created when disabled people attempt to redefine their roles, take control of their own care arrangements and place their experience of the care system and the policies underpinning it. Drawing on a study comprising 54 qualitative, in-depth interviews with disabled people and other key stakeholders from various sectors linked to the Ontario’s Direct Funding Program in Canada, the author address several sensitive and complex issues. The book is rich in extracts from these interviews and provides a summary of the history of the disability movement in Canada, which helps to locate the debates within the book.
Against a political background of neoliberalism and austerity, the potential consequences of independent living through direct funding programmes and schemes are debated. The dangers inherent in shifting responsibility of care to the individual are flagged up. Kelly is clear that while direct funding may benefit disabled people in their day-to-day living, the shift of the responsibility of care provision to individuals acts as an endorsement of neoliberal governments’ policy and may act to undermine disabled peoples’ support by creating hostile environments for social movement activity. Although the book focuses on a Canadian Direct Funding Program, similarities and differences between other Direct Funding Programs – for example, the direct-funding schemes in the United Kingdom – are highlighted, giving the book an international perspective.
Within the book, Kelly argues that care must be made ‘accessible’. In developing this concept of accessible care, Kelly’s key message is that bridges must be built between the different perspectives on care. Four arenas are identified which bridges need to span in order to develop this concept further (from daily experiences of disability and care to theoretical discussions; across feminist care research and disability perspectives; across divisions and anxieties within disability communities; from the local to the transnational context) (28). These bridges are not seen as unifying these competing perspectives but as a means of moving back and forth between them without rejecting any one perspective.
Drawing on interviews with those in receipt of care and the author’s use of autoethnography, the book examines the challenges of redefining the term ‘care’. The Questions of ‘what is care and non care?’ and ‘how can the multifaceted forms of care and the multiple viewpoints of disabled people be successfully incorporated in definitions of care?’ are asked. Using the lived experiences of disabled people, Kelly provides a thorough analysis of how focusing on one thread in the disability movement risks the marginalisation of some disabled people. A central and dominant message from disability movements is that disabled people do not need care. Yet there are many disabled people with long-term conditions and/or with complex health issues who require assistance during periods of illness who would label it as ‘care’. Kelly highlights the contradictions implicit in accessing direct funding for those who wish to self-manage and how avoiding defining care as oppressive for some disabled people may be tied to a fear of losing access to direct funding.
As well as addressing the complexities surrounding the redefining of care, Kelly discusses the difficulties of teaching those defined as ‘professionals’ about the philosophical approach to disability and independent living. It is noted how acceptance of this philosophical approach requires a shift away from seeing the health professionals and other key non-disabled stakeholders as having expertise that takes precedence over the disabled person.
The challenges, tensions and dilemmas inherent in carrying out research with disabled people are also discussed in the book. The differences in status and power between researcher and research participant are highlighted. This discussion is informed by a feminist epistemology and also appears to draw on the work of disability theorists who have previously highlighted the potential for research to contribute the disability industry and thus the oppression of disabled people (see, for example, Barnes and Mercer Citation1997; Swain et al. Citation2004). There are many complexities surrounding the ‘doing of research’, and the potential for research to promote a certain perspective of care and misrepresent the experiences of research participants is addressed. Even well-established qualitative methodologies using reflectivity have the potential to fail, and accurately representing the disabled person’s viewpoint is cited as a ‘calculated gamble’ (61), which often results in failure on the part of the researcher. Whilst this narrative is not new, Kelly highlights the need for researchers to openly acknowledge this failure and accept some responsibility for the continued oppression of disabled people and/or those in receipt of care through research production.
However, Kelly is realistic about the challenges this will involve in the competitive, neoliberal informed environments of higher education where the pressure to publish and produce fundable research proposals is high and the importance of acknowledging that the researcher’s analysis may only partially reflect the viewpoint of those taking part in it may be lost. Kelly concludes that many of the tensions inherent in the research process are ‘irresolvable’ (45), particularly where status and power do not allow for any acknowledgement of failure. Acknowledgement of this failure is seen as providing opportunities to develop relationships and encourage alternative methodologies and ontologies. Kelly cites the autoethnographical methodology as offering a way forwards; it enables the researcher to position themselves within the research and is grounded in the values of ‘feminist standpoint epistemology’ (47). The potential acceptability of such a method in academic domains with vested interest in the disability industry (e.g. such as health and medicine) where traditional quantitative methods tend to dominate, is given limited attention in the book. Otherwise the complexities associated with producing research in higher education are fully addressed.
Overall, Disability Politics and Care provides a comprehensive, unflinching and thorough examination of the complexities, tensions and contradictions inherent in direct funding and care. This book is a vital addition to the reading list of all those interested in direct funding, care and disability politics, and would be a good introduction to these areas for anyone seeking an overview of them.
Independent Disabled researcher, Denmark
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References
- Barnes C., and G. Mercer. (eds). 1997. Doing Disability Research. Leeds, UK: Disability Press, University of Leeds.
- Swain J., S. French, C. Barnes and C. Thomas. (eds). 2004. Disabling barriers-Enabling Environments. 2nd ed. London: Sage publications.