Phase 3: Conceptualising new services
Vic Finkelstein, Centre for Disability Studies, University of Leeds
Abstract
The first UK course in disability studies was presented by the Open University (OU) in 1975. Although not labelled 'disability studies' until I first used the term in Britain in the remade course workbooks and publicity material in 1990 (if not earlier) the original course contained certain features which can only be characterised as 'disability studies' and in certain respects those features remain unique. As a correspondence university, OU publicity and course materials were accessed by a very large audience. This meant ideas disseminated by the first and subsequent courses penetrated the consciousness of a large body of disabled people as well as practitioners working with disabled people. A consequence was that the language of disability studies increasingly became common currency. The ground-breaking OU course paved the way for disability studies in the UK.
A central feature of the course was its focus on updating working practice with disabled people in the community. This reflected the national shift from institutional care to community care that started in the late 1960s. If phase 1 in the modern history of disabled people is regarded as the provision of institutional 'care' then phase 2 can be seen as involving the migration of 'care' from institutions into the community. In this phase it was inevitable that established service practices in the community were increasingly questioned. The proliferation of new types of organisations of disabled people and the emergence of the UK's first CIL, the Centre for Integrated Living in Derbyshire (DCIL), took up the challenge. An important focus of DCIL was establishing ways of collaborating with State health and welfare services in developing an integrated social support system which would be accountable to disabled service users. This approach departed significantly from the development of Centres for Independent Living (CILs) which are staffed by disabled people and geared up for competition within a USA-style free market for community based services.
With the advent of centre right governments in the UK since the 1990s creeping privatising of the statutory health and welfare services has been encouraged. In these circumstances the DCIL was put under increasing strain, eventually abandoning its original radical 'integrated living' agenda in order to survive. What was once a minority approach in the UK, the USA-style 'independent living' approach, now gained ground. Alongside this the radical OU disability course lost viability and study material in this area changed orientation to 'care in the community'. The national switch from 'socialised' to 'privatised' services was given a final stamp of approval by the disability movement when the British Council of Disabled People (BCODP) made lobbying for civil rights its top priority and failed to address the implications of privatisation. Not surprisingly, this implication came to the fore when the champions of USA-style CILs for the UK found ties with the BCODP too inhibiting for their entrepreneurial role in the expanding market for 'care in the community'. The National Centre for Independent Living, to the government's relief, has become 'independent' and has been freed to take the centre stage as the UKs premier disability organisation. This only left a need to create a centralised body to constrain excesses in the 'care' free market. This role has fallen to the 'Social Care Institute for Excellence', and the transformation of the UK disability movement into an American clone is complete.
The ascendancy of the 'centre right' in the disability movement at the turn of the century has been accompanied by systematically writing-out unique aspects of UK disability history. This side of our history is being replaced with interpretations compliant with the privatisation of community based services. Its as if the Open University disability courses and the Centres for Integrated Living never existed. In disability arts the role of politically active disabled people in starting the cultural revolution is completely ignored. The radical social model of disability is being 'rectified' and presented as a 'rights' model. Yet there has been very little debate about these developments both in the disability movement and, more importantly for disability studies, in the academic stable. This paper leaves a historical trace of past endeavours for future interrogation when questions are raised about where we went wrong.
If phase 2 in our history is not to finish in the dead-end of more sophisticated forms of dependency on people with capabilities to finance our survival in their world then we have to re-address fundamental questions raised at the end of phase 1 - 'What support systems are required to enable the emancipation of disabled people in all aspects of social life?' Our experience shows over and over again that adaptations and legal regulations to modify the world created by people with capabilities cannot provide an answer. To enter the next historical period, Phase 3, we have to rediscover the innovatory spirit with which we greeted entry into phase 2.
Disability studies has already demonstrated that emancipatory research cannot emerge without changes in methodology and funding criteria. In this paper I argue that disability studies, too, cannot become emancipatory without fundamental changes to academic course structures. Disability related conferences, such as this, need to discover emancipatory ways of presenting our conferences - copying conference models set by people with capabilities will only make our meetings as sterile as theirs have become. We cannot participate in a world created by people with capabilities without changing it. I don't think disabled people have quite got round to the fact that the social model of disability means 'seeing the whole world from a new perspective'!
Above all, this means constructing new ways of providing social support systems for all. I cannot see how this can be achieved without addressing the problem of establishing new community based professions; I believe this focus could make disability studies a leading academic field and not yet another academic game.