Copyright Sociological Research Online,


Disability Politics and Community Care

Mark Priestley
Jessica Kingsley Publishers: London
1998
1853026522 (pb)
15.95 (pb)

Order this book

Controlling the Agenda

In 1993, when Mark Priestley embarked on the research which led to this book, he took to heart the criticisms of disabled people that there needed to be a fundamental shift in the social relations of research production (Oliver, 1992). This should not just involve researchers employing different methods of data collection or analysis which may be more enlightened than those that had preceded them, but if research was to be conducted within an emancipatory paradigm it would involve disabled people controlling the agenda. In order to put this into practice, he contacted the Derbyshire Coalition of Disabled People (DCDP) and presented himself as a researcher who was intending to study for a PhD and invited them to set the agenda for his study.

At the time the DCDP and the Derbyshire Centre for Integrated Living (DCIL) were being forced to confront some fundamental challenges to their objectives that had been brought about by the implementation of the NHS and Community Care Act 1990. While DCIL had been at the forefront of developing independent living services for disabled people in partnership with Derbyshire Social Services, the new contract culture in social care was pushing the local authority towards a very different set of values to those inherent in the independent living movement. Community care was concerned with value for money and the measurement of outcomes reflected this, whereas independent/integrated living was, and is, more concerned with achieving social and political change that would enable disabled people to gain equality in terms of citizenship.

The result of Priestley's approach was that he was commissioned (without remuneration) by DCDP to carry out a study of ways of measuring quality that reflected the values of the DCIL and he succeeded in gaining ESRC sponsorship for the research. So from the outset the agenda for this study was both set and in the control of those who would be most affected by its outcomes-disabled people.

In common with others who have examined the rhetoric of 'choice' and 'independence' within community care policies, Priestley concludes that there is a gap between the aspirations of the state and disabled people. He gives three reasons for this:

First, the preoccupation with 'care' has reinforced the association between disability and personal tragedy (rather than structural exclusion)...
... Second, the preoccupation with individual 'packages of care' has reinforced the currency of individual models of disability which locate the problem within the body (rather than within the systems and structures of a disabling society)...
... Third, the maintenance of disabled people within a separate administrative category of welfare production reinforces the cultural construction of disability as otherness. (pp 218-219)
The effects of this is that local authorities continue to view disabled people simply in terms of their need for a range of services which are designed to maintain them according to the authorities' definition of independence. Such definitions tend to promote a functional view of independence and do not consider disabled people as citizens, as citizenship is not on the local authorities' limited list of 'care' needs. Individuals within Priestley's study report on how this has restricted their ability to control the way in which they lead their daily lives and, how receiving services through DCIL had changed that. Their control over their lives is brought about by a completely alternative set of values governing the receipt of services. These can be seen in the language of 'personal assistance' rather than 'care' and in the focus on integrated/independent living rather than the institutionalisation of community care.

In constructing his thesis Priestley examines the dominant cultures within disability services and the role that the disabled people's movement has played in countering these. What is clear from this book is that it is unrealistic to expect those in control of community care services to change through exposure to research that has shown the need to take a social model analysis of disablement, but that the disabled people's movement will have to continue to challenge the right of non-disabled people to remain in control. This process is already having some impact in terms of the introduction of direct payments and the Disability Discrimination Act, but both are limited unless they also include an ideology of integrated living and promote the equality of citizenship.

Direct payments for example may allow some disabled people to take control over the day to day aspects of the support they need but as Priestley argues, this only fits in with a privatised model of welfare. Furthermore, local authorities continue to have control over whether to permit people to receive direct payments and they could exclude the costs of support from organisations such as DCIL which would enable such money to be used to promote integrated living. At its outset DCDP had set out seven needs which would permit disabled people to be integrated within the community: information, counselling, housing, technical aids, personal assistance, transport and access. If direct payments are to be limited to those which local authorities determine as necessary, then the result will be a transfer of institutional forms of living from residential and nursing homes into the community. This is not integrated or independent living.

One of the strengths of Priestley's analysis is the detail he goes into in examining various aspects of the issues. He contextualises his examination of the marketisation and practice of social care in terms of social movements and of disabled people organising to bring about social, political and economic change. As a result he goes 'beyond services' (the title of his 7th chapter) to make proposals about what a system of quality assurance or measurement should include. He is critical of traditional quality of life measures which he argues have 'tended to contribute to the oppression of disabled people by obscuring both their community presence and their needs' (p. 186). Instead he argues for an 'e-quality' approach which would recognise a person's individual need for services and their collective need for citizenship and civil rights as a member of an oppressed group.

Priestley goes on however to draw an important distinction between disabled people and other oppressed groups which is that while black people and women have been subjected to exploitation in the labour market,

the cultural construction of disabled people (in terms of tragedy, the impaired body and otherness) has been exploited ideologically to exclude them from the processes of production and reproduction altogether. (p. 216)
He goes on to argue that,

In order to dismantle the administrative segregation of disabled people, and the disabling cultural values which underpin it, it would be necessary to dismantle some of the most fundamental mechanisms of structural state control. Consequently, any attempt by the disabled people's movement to reclaim and redefine popular discourses of disability and welfare also challenges the social relations of production and reproduction within a capitalist economy. All this takes us a very long way away from 'community care'. However, if we are to accept the agenda of the disabled people's movement, that is probably where we ought to be. (pp. 216-217)
This is an important book for those engaged in the delivery or study of welfare. Priestley's study confirms many others which have attempted to examine the impact of individual model approaches to the delivery of 'care' services, and his analysis of the importance of the disabled people's movement to redefining the role of welfare is a strong and welcome addition to the growing body of literature in this field. He started the study by putting the research agenda clearly within the hands of disabled people and has succeeded in putting the case that this is what should be done with the welfare agenda.

Bob Sapey
University of Lancaster

Reference

OLIVER, M. (1992) Changing the Social Relations of Research Production, Disability, Handicap and Society, 7(2) pp. 101-114.

Copyright Sociological Research Online,