The focus of this article is participatory research with and by people with learning disabilities. Drawing on discussions that took place across a series of seminars, we use the concepts of space and boundaries to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory and non-participatory research; the boundaries that exist between different stakeholders of participatory research; and the boundaries that exist between participatory research with people with learning disabilities and participatory research with other groups. With a particular focus on participatory data analysis and participatory research with people with high support needs, we identify a number of ways in boundaries are being crossed. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods.
BackgroundThis study explores the training involved when people with learning disabilities take their place in the community as researchers. This was a theme in a recent UK seminar series where a network of researchers explored pushing the boundaries of participatory research.MethodAcademics, researchers with learning disabilities, supporters and other inclusive researchers considered important themes arising from presentations about developments in participatory research. The paper emerges from critical reflection on these rich discussions.ResultsA seminar series is a form of research training and capacity building, albeit a dynamic, interactive and collegial one. More formal training in research skills for people with learning disabilities is being developed but raises questions regarding the best contribution people with learning disabilities can make to the research process.ConclusionThere are various models of training for inclusive research, but these need to be reciprocal if they are not to undermine the inclusive goal.
Where problematic practice was discussed, supporters were open to developing alternative approaches. Acknowledging members contributions alongside the work of their supporters helped nurture more collaborative relationships. A lot of accessible methods were used to find out what was happening. Much support work is hidden away and not listed by organisations. The supporter role is very complex where supporters are managed by members. Supporters may find ways to hold on to power even when they say they try not to. There were some good ways seen for members and supporters to work together fairly. The writer talks about working in a team with researchers with learning difficulties. The study concludes that we can all learn from each other.
Carlisle Research 'Co-op' is a group of eight people who aim to do 'person-led' research in a way that changes ideas and makes life better for people labelled as having learning difficulties. The group is made up of four men and four women. Six members of the group are labelled as having a learning difficulty. The other two people act in a role of involved support. This article is an attempt by the two members of the group who have support roles to explain what they do, to look at the changes that have happened within this group and to open up a debate as to the research support role in the self-advocacy movement.What academic people say about support in research Walmsley (2001) talks about the idea of 'inclusive research', that is, involving people who are labelled as having learning difficulties in the research process. This can cover a range of approaches from people taking part in a small or big way (participatory research), which is done by researchers like
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