3 December 2002, Great Southern Hotel, Dublin Airport
Enthusiasm and the feeling of a new and better era ruled at the Inaugural Disability Research Conference co-hosted by the NDA and the Centre for Disability Studies UCD. There was a full attendance of 150 delegates, although many more had applied to attend. The conference was chaired by Mary van Lieshout, Head of Research and Standards at the NDA. The keynote speakers were Professor Mike Oliver from the University of Greenwich and Professor David Mitchell of the University of Illinois. There were two parallel series of workshops morning and afternoon and several of the presentations came from disabled people’s groups—for example, Mullingar Resource Centre presented ‘It’s my life, it’s my workplace’, and Making Minds Matter presented ‘The revolving door syndrome’. Other presentations on research in the area of intellectual disability were ‘Continuing the integration of pre-school children with a mild to moderate intellectual disability into community pre-school: Support and research requirements’ (D. Burns), and ‘The development of personal relationship and sexuality guidelines for people with learning disabilities’ (D. Evans). A documentary film ‘A world without bodies’, which dealt with Nazi Psychiatric Institutions, was shown continuously throughout the day.
Claire O’Connor opened the conference with a rundown of NDA research to date and a commitment that all NDA research would be grounded in the social model. She undertook to include people with disabilities in the research process, to develop research protocols, and to develop systems for the promulgation and dissemination of research.
There had been progress since Strategy for Equality, but perhaps not as much as had been hoped. More coordination and more social model studies were needed. She mentioned NDA plans for the commissioning of a new study on the prevalence of disability, their protocols for disability research, and their register of researchers. She also flagged their new fully accessible website which will contain downloadable documents, library catalogue, on-line discussion board and events diary.
Professor Mike Oliver, the grand old man of Disability Research, was the first keynote speaker and his fighting spirit, frankness and directness of speech were still alive and well, despite the fact that he is to retire in the new year. He detailed models of disability research and the problems associated with each. In his sceptical view the positivist paradigm still dominates. He still believes research can be labelled disabling if it fails to reflect experience, hasn’t led to better provision and doesn’t recognise the political aspect. He felt research benefited researchers (including himself), much more than it had benefited the people with disabilities who were the subjects of their research. He questioned the benefits of prevalence studies—which are usually billed as the prelude to better services—and he questioned the WHO definitions and ICIDH 2. He referred to Anne Oakley’s new work which has had a major influence on emancipatory methods, but he critiqued this methodology along with action research—drawing attention to possible exclusions, lack of representativeness and the difference between intentions and outcomes which can, alas, leave structures unchanged. A new monster emerged—‘investigatory foundationalism’, the bloodhound factor in research—going back in Oliver’s time-honoured Marxist manner to the social relations of production. He quoted Denzin who saw research as ‘producing, not investigating, the world’. Research into disability can, in his view, be part of the process of producing disability. He said we have to stop seeing research as something done by experts, and we have to use the expertise and opinion of people with disability—putting controls into the hands of people themselves. It is too simplistic to distinguish between partisan and unbiased (scientific) research. Research should not be used to investigate the world as it is, but ‘to produce the world’ that we want.
Rita Kwiotek, of UCG, had the difficult task of responding to Mike Oliver’s paper. She spoke of the small proportion of NDA research which she felt to be emancipatory. She called for a theoretical composite—an equality model encompassing several approaches, but always including the inputs of people with disabilities: ‘nothing about us, without us’.
In the afternoon Professor David Mitchell gave an address challenging the past focus on the biological side of ‘bodily, sensory or cognitive difference’—the focus on impairment, health and ‘fixing’ by medical and clinical rehabilitation researchers. He referred to the exhaustion of ‘people-based research practices’ and postmodernist influences on the disability area. Professor Patricia Noonan Walsh responded to Professor Mitchell. She spoke of the route that had taken her to the Centre for Disability Studies at UCD, the changes she had seen along the way and her hopes for the future. She reminded us of the importance of ‘a moral base’ for research. The most empirical and detached people do not necessarily have the truth. Research should, in her view, be uncomfortable, because it moves you away from the familiar—a form of exile. But, quoting Josef Brodsky, she said that ‘Exile can take you further in a week than it would otherwise take a lifetime to go’. Indeed, a challenging thought for researchers.
Before the close of the conference Angela Kerins, Chairperson of the NDA, presented cheques to the nine recipients of the 2002 Research Scheme, to build research capacity among voluntary groups in disability. The winners were AHEAD, Clondalkin/Tallaght Disability Partnership, Irish Deaf Society, Irish Tinnitus Association, Nigel Clare Trust Ireland, Dublin Northside Partnership, Roscommon Disability Group, Súgradh and Ballincollig Mental Health group.
Those wanting to take part in next year’s NDA Research Conference—and it’s a good place to be—will want to get working on their emancipatory methology now.