four - ‘An equal relationship’?: people with learning difficulties getting involved in research
Published online by Cambridge University Press: 20 January 2022
Summary
Introduction
During the 20th century, there has been no shortage of research into medical and cognitive aspects of learning difficulty. During this period, the medical profession has had an enormous influence on the construction of knowledge about ‘learning difficulty’, known in previous eras by terms that are now considered to be abusive and derogatory, like ‘subnormality’ or ‘mental handicap’ (Rioux and Bach, 1994). Researchers were concerned in the main to find out what ‘learning difficulty’ actually was, and what negative impacts it had on individuals. As Walmsley (2001) points out,
[until the late 1960s] people with learning difficulties were tested, counted, observed, analysed, described and frequently pathologised, but never asked for their views. (Walmsley, 2001, p 188)
It has only been relatively recently that researchers have paused to consider what people with learning difficulties themselves have to say about their lives, and to consider their views to be a focus for research (Goodley, 1996).
This chapter aims to re-examine the relationship between researchers and those who are researched, by taking an insider look at examples of inclusive research that have been carried out with and by people with learning difficulties. This is still a controversial area, with dilemmas that are rehearsed often within the academic literature. For many, as Walmsley (1997) pointed out, it seems a contradiction in terms to speak of researchers with learning difficulties, since research by its nature implies a high level of cognitive ability. Critics also question the authenticity of inclusive research in which non-disabled supporters are involved; the work carried out by the supporter or advisor is extremely important to many authors:
If people with learning difficulties need non-disabled allies in the research process in order to convey their experiences in a way which is acceptable to the research community and its gatekeepers, how can the integrity of their accounts be maintained? (Chappell, 2000, p 41)
There have been many debates in academic arenas about the distinctions between emancipatory research (Oliver, 1992; Zarb, 1992), which is research initiated and controlled by disabled people and their organisations, and participatory research Chappell, 2000), where disabled people are involved in others’ research projects.
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- Information
- Researchers and their 'Subjects'Ethics, Power, Knowledge and Consent, pp. 73 - 88Publisher: Bristol University PressPrint publication year: 2004