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Researchers and their 'subjects'Ethics, power, knowledge and consent$
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Marie Smyth and Catherine Bond

Print publication date: 2004

Print ISBN-13: 9781861345141

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781861345141.001.0001

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PRINTED FROM POLICY PRESS SCHOLARSHIP ONLINE (www.policypress.universitypressscholarship.com). (c) Copyright Policy Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in PPSO for personal use.date: 28 September 2021

‘An equal relationship’?: people with learning difficulties getting involved in research

‘An equal relationship’?: people with learning difficulties getting involved in research

(p.73) Four ‘An equal relationship’?: people with learning difficulties getting involved in research
Researchers and their 'subjects'

Beth Tarleton

Val Williams

Neil Palmer

Stacey Gramlich

Policy Press

During the twentieth century, much research was carried out on the medical and cognitive aspects of learning difficulties. During this period, the medical profession has a profound influence on the construction of knowledge about the concept of ‘learning difficulty’, known in previous periods as ‘subnormality’ or ‘mental handicap’ — terms which are now considered as derogatory. During this period, researchers were concerned to find what a ‘learning difficulty’ actually was and what the negative implications of a learning difficulty to individuals might be. It was only 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. This chapter re-examines the relationship between researchers and those who are researched, by taking a closer look at examples of inclusive research that have been carried out with and by people with learning difficulties. This is a controversial area, with many debates and dilemmas attached to it. For many, it seems a contradiction in terms to speak of researchers with learning difficulties, since research by its nature implies a high level of cognitive disability. Critics also question the authenticity of inclusive research in which non-disabled supporters are involved. In addition to these debates, disabled people seldom have control of every aspect of the research that concerns their lives. Issues of power and control involve additional debates on inclusive research with people with learning difficulties. This chapter begins by discussing the Norah Fry Research Centre and then presents a range of examples from different perspectives. This sample of research includes research from Beth Tarleton, Val Williams, Neil Palmer and Stacey Gramlich. The chapter concludes by discussing the controversial questions of skills, support and power in the light of the accounts given in this chapter from different viewpoints.

Keywords:   learning difficulty, inclusive research, researchers with learning difficulties, disabled people, power and control

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