Designs for Living: A Comparative Approach to Normalisation for the New Millennium
STEVEN CARNABY
First published 1999 by Ashgate Publishing
Reissued 2018 by Routledge
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Copyright Steven Carnaby 1999
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A Library of Congress record exists under LC control number: 99073636
ISBN 13: 978-1-138-60726-2 (hbk)
ISBN 13: 978-0-429-46044-9 (ebk)
I would like to give special thanks to all the service users in London and Milan, their families and support staff who kindly agreed to talk to me about their services and allowed me to gain a sense of their daily lives.
My thanks to Sally Sainsbury at the London School of Economics for her unfaltering support, encouragement and inspiration throughout the time I have been working on this project.
In addition, this study would not have been possible without support and advice from the following people: Laura Barnes, Jill Bradshaw, Hilary Brown, Salvatore Cassaro, Giovanna Cassaro, Elio Ferraro, Caroline Mitchell and David Stewart.
Trish Barton deserves my gratitude for her patience and dedication while typing this manuscript.
Services for people with learning disabilities in Britain are generally founded upon the principles of normalisation (Ward 1992), described by Wolfensberger (1972) as the
utilisation of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviours and characteristics which are as culturally normative as possible.
More recently, the approach has been implemented using the Five Service Accomplishments as set out by OBrien (1985). This reformulation of Wolfensbergers ideas stipulates that people with learning disabilities should be present in their local communities and be supported in making choices about their lives, as well as being afforded respect and the opportunities for developing competence and participation in everyday life.
While it is acknowledged that normalisation has been responsible for a revolution in terms of the way that society approaches people with learning disabilities (Ward 1992), particularly in terms of deinstitutionalisation, there has been increasing criticism during the 1990s for its tendency to advocate a white, male, middle class set of values (e.g. Baxter et al 1990) and devalue relationships between people with disabilities (e.g. Szivos 1992; 1993), as well as overlook the difficulties faced by people with profound and multiple disabilities (Smith 1994).
The hegemony of normalisation
From the time of the Jay Report (1979), normalisation has gained ever widening support to the point where, for the last decade at least, it appears to have achieved a position of hegemony. The unchallenged prevalence of the normalisation approach in British learning disability services has led to great difficulties in terms of allowing alternative views of supporting disability to be considered, or even their existence realised. Developing a critique is fraught with obstacles, the central issues being that research purporting to explore the significance and impact of the OBriens Five Service Accomplishments (op cit.), and therefore normalisation, is likely to assess outcomes in services, rather than develop a coherent criticism of the principles themselves. For example, studies interested in quality of life issues will monitor the number of relationships service users have with non-disabled others (e.g. Ralph & Usher 1995), or the frequency of opportunities available for forming such relationships (Kennedy, Horner & Newton 1990). Such approaches fail to question the assumption, according to the principles of normalisation, that relationships with non-disabled people are more valuable than those formed with disabled peers. Quality of life is measured by the range of opportunities offered for integrating with the local community, without considering whether self esteem and the security needed (Szivos 1992) by everybody but particularly vulnerable people (Townsend 1962) might result from support best obtained in the first instance from peers and perhaps involved members of the family or similar significant others.
A shift in the methodological framework
This book tries to address many of the issues outlined above by using a comparative approach to studying the impact of normalisation. Previous research which purports to consider the quality of life of people with learning disabilities can only really be said to have tinkered around the edges of the methodological problem. It is essential that the effects of implementing ideology are carefully scrutinised. Ironically, while choice is a key concept in service delivery and a rhetorical benchmark of good practice, the lack of choice offered to service providers with regard to ideological thinking and models of care has led to a stifling situation where managers and direct support staff alike are often at a loss to think creatively about service design. Normalisation more commonly referred to in the 1990s as ordinary living has come to mean everything that is acceptable about learning disability services. The concern here is that those providing support have stopped questioning the foundations upon which their work is built, always working in the name of normalisation without being critical and aware of its effect.
Why now, why Italy?
The new millennium seems as good a time as any for thinking seriously about how normalisation can be modernised in ways which maintain its relevance as a framework for those supporting people with disabilities and indeed any other group of vulnerable people who use support services. The recommendations and ideas for taking normalisation into the 21st century are derived from an exploratory, qualitative study which aims to highlight important issues and outcomes in the London services described by comparing them with similar provision in Milan, Italy. The choice of Italy as a partner nation was made for a number of reasons: initial contacts with professional bodies and agencies led to a conducive working atmosphere accepting of research, while other work studying mental health services has proved important in developing greater understanding of how similar services operate in another culture as well as arguably providing important insight into the Italian way of life (e.g. Ramon 1981; Donnelly 1992).
