Policy Press
Four ‘An equal relationship’?: people with learning difficulties getting involved in research
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Abstract
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.
Abstract
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.
Chapters in this book
- Front Matter i
- Contents v
- Notes on contributors vi
- Introduction 1
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Participation and inclusion
- Ethical considerations in service-user-led research: Strategies for Living Project 19
- Making the decision about enrolment in a randomised controlled trial 35
- Ethical protection in research: including children in the debate 55
- ‘An equal relationship’?: people with learning difficulties getting involved in research 73
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The review and governance process
- Research with psychiatric patients: knowing their own minds? 91
- Researching end of life in old age: ethical challenges 105
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Researchers’ relationships with participants
- Interviewing: the unspoken compact 121
- Using participative action research with war-affected populations: lessons from research in Northern Ireland and South Africa 137
- Conducting longitudinal epidemiological research in children 157
- Speaking truth to power: experiencing critical research 175
- Domestic violence and research ethics 195
- Conclusion 211
- Index 217
Chapters in this book
- Front Matter i
- Contents v
- Notes on contributors vi
- Introduction 1
-
Participation and inclusion
- Ethical considerations in service-user-led research: Strategies for Living Project 19
- Making the decision about enrolment in a randomised controlled trial 35
- Ethical protection in research: including children in the debate 55
- ‘An equal relationship’?: people with learning difficulties getting involved in research 73
-
The review and governance process
- Research with psychiatric patients: knowing their own minds? 91
- Researching end of life in old age: ethical challenges 105
-
Researchers’ relationships with participants
- Interviewing: the unspoken compact 121
- Using participative action research with war-affected populations: lessons from research in Northern Ireland and South Africa 137
- Conducting longitudinal epidemiological research in children 157
- Speaking truth to power: experiencing critical research 175
- Domestic violence and research ethics 195
- Conclusion 211
- Index 217
