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Pushing the boundaries of participatory research with people with learning disabilities: What have we learnt
The document discusses facilitating participatory research with people with learning disabilities, emphasizing shared learning, collaboration, and the blurring of boundaries between participants. It highlights the importance of various methods and approaches such as storytelling and multi-sensory methods, which enhance participation and understanding. Ultimately, it advocates for a shared space where different stakeholders can engage and contribute to research efforts effectively.
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Pushing the boundaries of participatory research with people with learning disabilities: What have we learnt
- 1. Towards Equal andactive citizenship: pushing the boundaries of participatory research with people with learning disabilities What have we learnt? Jane Seale
- 2. Analysis and Feedback – We will talk about the issues raised across the seminar series. Jane will present the project team’s thoughts. We will then invite you to share your ideas and comments. Brainstorm – Liz will lead a ‘brainstorm’ session. We would like to create a resource that helps more people get involved in participatory research. We would like to hear your ideas about what would be most useful, and how we could do it. Shared problem-solving – You were invited to send ahead 'problems' that were bothering you in relation to doing participatory research. Mel has selected a few for discussion in small groups. This will help us to work through real challenges together and share our ideas so we can all learn.
- 3. Analysis and Feedback Spaces Boundaries
- 4. A different space • participatory research inhabits 'different spaces and offers different ways of seeing‘ (Cook,2012)
- 5. A shared space Academic Researchers People with Learning Disabilities
- 6. Who shares thespace? Academic Researchers People with Learning Disabilities Support Workers ? Ethics Committees Funders
- 7. A space inwhich we do things • We learn • We talk • We do research • We make the space together – Socially constructed, shared Participatory Research as a ‘spatial practice’ (Lefebvre, 1991; Thompson, 2007)
- 8. A space inwhich we push boundaries
- 9. A space inwhich we blur boundaries
- 10. An example Walmselyand Johnson (2003): inclusive research as a term allows for blurred and shifting boundaries between for example, feminist, participatory and emancipatory research and it 'has the advantage of being less cumbersome and more readily explained to people unfamiliar with the nuances of academic debate' (p.10).
- 11. A space inwhich sometimes we agree What is analysis? Pulling a rabbit out of a hat? • I am a scientist • I know the right methods • Therefore I can find out what this all means Mostly that is not the way things work…. Hey presto!
- 12. A space inwhich sometimes we disagree • Accessible research is about making things simple, but analysis is not always about making things simple, it is about understanding all that is complex and messy. (Melanie Nind)
- 13. Participatory Data Analysis: The Pushing and Blurring of Boundaries
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- 15. Observation and Videodata Making videos So let’s see what these themes mean – how do support workers do these things?
- 16. Interview and Focusgroup data When we got the audio files from all the focus groups… Analyse the data Interviews • We visited a home for elderly people and a neighbourhood for blind people • We did the interviews in the people’s homes • Saw how they lived • The interviews went well
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- 18. Disability Specific Methods Thought-Balloon Lot in common, understand each other better Be aware of the rights of disabled people People should not be called mongolid Peole should be equal Emotion-Balloon
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- 21. Everyone is involvedin all aspects of analysis
- 22. Academics do thefirst bit of analysis 1. University co-researchers Wrote word by word what people said Pointed at 19 important things that people had said 2. We all got together and talked about the 19 important things University Co- Co-Researcher with intellectual disability Supporter Researcher
- 23. People with learningdisabilities do the first bit of analysis Being friendly • We looked at body language • People were friendly to each other • They were able to have a good laugh • They had good team work Why is this ‘new’? It’s treating each other like human beings!
- 24. Can we copewhen some people in our space blur the boundaries?
- 25. Participatory research with people with high support needs: The Pushing and Blurring of Boundaries
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- 30. Story-telling as amethod
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- 32. Changing our thinkingabout participation • Debby Watson involved – Parents- to find out as much as possible about child – disabled people from a local advocacy group as co-researchers- but the research was not about them, it was about children with PMLD • “the groups session actually wouldn’t have worked well if I hadn’t had the young disabled people from the Listening Partnership with me because they went right off script and just asked the children things that they could answer, like what’s your favourite colour? This put them and their supporters at ease and we went on to get some useful data”
- 33. Changing our thinkingabout what counts as research
- 34. Changing our thinkingabout methods Theories about storytelling what do these images suggest? Stories are what you read to kids: in education this is the dominant idea; almost no oral personal narrative in curriculum Stories are performances by one person, everyone listens quietly. Can lead to “oh dear, I can’t tell stories” People tell stories together, the listener is actively involved; stories of personal experience are face to face, animated. EVERYONE does this all the time! This is what we do in Storysharing & Stories as co-constructed
- 35. Participatory research asa boundary object • As a 'boundary object' participatory research is a collectively generated shared space, which has no fixed boundary 'allowing different groups to work together without consensus". Susan Leigh Star (2010: 602-3) • In easy speak – As participatory researchers we all want the same thing (object) – to enable people with learning disability to participate in research – Sometimes we agree and sometimes we disagree on the best way to make that happen
- 36. Participatory research is‘localised’ and reflective • Boundary objects reside between groups and are inherently ill-structured, having a vague identity. This vagueness means that groups may not always achieve consensus. • This does not stop groups from co-operating however. Instead, when necessary, local groups (subsets of the larger groups) tailor the object to their local uses. • In doing so, they do not necessarily reject the common wider object, rather they 'tack back and forth' between the common object and their more localised object"; between the ill-structured and the well-structured. • Boundary objects are therefore subject to reflection and local tailoring.
- 37. The way wedo participatory research is influenced by our local contexts Here There
Editor's Notes
- #8 (Lefebvre, 1991) of the participatory research community. From Nind (2014)- Thomson (2007, p.2009) conceptualises
- #11 Walmsely and Johnson are clear: inclusive research as a term allows for blurred and shifting boundaries between for example, feminist, participatory and emancipatory research and it 'has the advantage of being less cumbersome and more readily explained to people unfamiliar with the nuances of academic debate' (p.10).