Researching Together

Abstract

To be empowering, the research must be designed with a group of people who have decided to obtain power, and then must be conducted so that the group learns how to do the research as well as decides what research needs to be conducted. (Sample, 1996: 320) This article describes a project in which Bristol Self Advocacy Group members visited similar groups in their area, and carried out group interviews based on their own research questions. Some academic researchers appear to question the genuine research involvement of people with learning difficulties and I attempt to answer some of these views. The group has already published, in their own names, their views about the process of doing research and their findings (Palmer & Turner, 1998; Palmer et al., in press), and have produced a booklet aimed at other self advocacy groups (Finding Out, 1999). However, in view of the importance of such a group expressing their own viewpoint directly, a word of explanation is in order about the authorship of the present article. It arose originally from my attempts to summarise for the Research Group some of the literature mentioned in this paper, which resulted in an ‘alternative paragraph’ article, in which I wrote one point, and one group member responded in the next paragraph. That project is still in progress, but in the meantime, the group members wanted me to write the present article. I include their own words and writings at several points, but this remains essentially my account of what has happened.

The power of difference in inclusive research

“…Overall, these empirical studies show that there are possibilities for people with intellectual disabilities to be actively involved in research and the positive impact of this involvement and empowerment for people with intellectual disabilities themselves (Abma, Nierse, and Widdershoven 2009;Bigby and Frawley 2010;Garcia Iriarte et al 2009;Nierse and Abma 2011;Williams 2005). Some studies even argue that it is possible for people with intellectual disabilities to be fully in control of the research process (Williams 1999(Williams , 2005. These studies also give insight into the conditions for involvement, like training people with intellectual disabilities and taking time for the process of working together.…”

“…They also should be able to take on valuable social roles to enhance their image in society (Culham 2003;Wolfensberger 1983;Yates, Dyson, and Hiles 2008). Following the emancipatory assumptions of the disability movement, some advocates of inclusive research even strive for full control of the research process in the hands of people with intellectual disabilities (Atkinson et al 2000;Chappell 2000;Williams 1999Williams , 2005. This has consequences for the power balance between the researcher and the person with intellectual disabilities involved: the power of the academic researcher is, at first sight, shared or even transferred to the person with an intellectual disability (compare Oliver 1992).…”

14. Methodological challenges

“…TuffreyWijne (2008) discuss the ethical tension when people with learning difficulties can understand and want to tell their story but not the process of theory building that may go on around it. Williams (1999) does not claim to have the solution to the challenge of involvement in data analysis, but she does recommend that data analysts with learning disabilities spend periods of concentrated time with the data on a frequent basis. Thematic analysis may then be possible, she argues, through using the research questions, through presenting a range of themes for co-researchers to explore, and by using the simpler concept of recording 'the bits they find interesting' and their reactions to these bits.…”

It is Time to Stop Talking and Start Doing: The Views of People with Learning Disability on Future Research

“…Involving people with learning disabilities in research can be done at many levels (Walmsley and Johnson, 2003). In some research designs, people with learning disabilities may act as primary researchers (Williams, et al 2005). However, it is also possible for people to act as advisors to research projects (Tarleton et al 2004).…”