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Towards Equal and active 
citizenship: pushing the boundaries 
of participatory research with 
people with learning disabi...
Analysis and Feedback 
– We will talk about the issues raised across the seminar 
series. Jane will present the project te...
Analysis and Feedback 
Spaces 
Boundaries
A different space 
• participatory research 
inhabits 'different 
spaces and offers 
different ways of 
seeing‘ (Cook,2012...
A shared space 
Academic 
Researchers 
People 
with 
Learning 
Disabilities
Who shares the space? 
Academic 
Researchers 
People with 
Learning 
Disabilities 
Support 
Workers ? 
Ethics 
Committees ...
A space in which we do things 
• We learn 
• We talk 
• We do research 
• We make the space 
together 
– Socially construc...
A space in which we push boundaries
A space in which we blur boundaries
An example 
Walmsely and Johnson (2003): inclusive 
research as a term allows for blurred and 
shifting boundaries between...
A space in which 
sometimes we 
agree 
What is analysis? 
Pulling a rabbit out of a 
hat? 
• I am a scientist 
• I know th...
A space in which sometimes we 
disagree 
• Accessible research is about making things 
simple, but analysis is not always ...
Participatory Data Analysis: 
The Pushing and Blurring of 
Boundaries
Pushing boundaries
Observation and Video data 
Making videos 
So let’s see what 
these themes mean 
– how do support 
workers do these 
thing...
Interview and Focus group data 
When we got the audio files 
from all the focus groups… 
Analyse the 
data 
Interviews 
• ...
Standard Methods 
Analysis Sheets
Disability Specific Methods 
Thought-Balloon 
Lot in common, 
understand 
each other better 
Be aware of the rights of 
di...
Improvised Methods
Blurring Boundaries
Everyone is involved in all aspects of 
analysis
Academics do the first bit of analysis 
1. University co-researchers 
Wrote word by word what 
people said 
Pointed at 1...
People with learning disabilities do the 
first bit of analysis 
Being friendly 
• We looked at body 
language 
• People w...
Can we cope when some people in 
our space blur the boundaries?
Participatory research with 
people with high support 
needs: The Pushing and 
Blurring of Boundaries
Pushing boundaries
Visual methods
Multi-sensory methods
Multi-media methods
Story-telling as a method
Blurring boundaries
Changing our thinking about 
participation 
• Debby Watson involved 
– Parents- to find out as much as possible about chil...
Changing our thinking about what 
counts as research
Changing our thinking about 
methods 
Theories about storytelling 
what do these images suggest? 
Stories are 
what you 
r...
Participatory research as a boundary 
object 
• As a 'boundary object' participatory research is a 
collectively generated...
Participatory research is ‘localised’ 
and reflective 
• Boundary objects reside between groups and are 
inherently ill-st...
The way we do participatory research 
is influenced by our local contexts 
Here 
There
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Pushing the boundaries of participatory research with people with learning disabilities: What have we learnt

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Presentation at ESRC funded seminar series in which Jane Seale summarises the main themes and issues that have arisen from the presentations across the seminar series: focusing particularly on spaces and boundaries

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Pushing the boundaries of participatory research with people with learning disabilities: What have we learnt

  1. 1. Towards Equal and active citizenship: pushing the boundaries of participatory research with people with learning disabilities What have we learnt? Jane Seale
  2. 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. 3. Analysis and Feedback Spaces Boundaries
  4. 4. A different space • participatory research inhabits 'different spaces and offers different ways of seeing‘ (Cook,2012)
  5. 5. A shared space Academic Researchers People with Learning Disabilities
  6. 6. Who shares the space? Academic Researchers People with Learning Disabilities Support Workers ? Ethics Committees Funders
  7. 7. A space in which 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. 8. A space in which we push boundaries
  9. 9. A space in which we blur boundaries
  10. 10. An example Walmsely and 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. 11. A space in which 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. 12. A space in which 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. 13. Participatory Data Analysis: The Pushing and Blurring of Boundaries
  14. 14. Pushing boundaries
  15. 15. Observation and Video data Making videos So let’s see what these themes mean – how do support workers do these things?
  16. 16. Interview and Focus group 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
  17. 17. Standard Methods Analysis Sheets
  18. 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
  19. 19. Improvised Methods
  20. 20. Blurring Boundaries
  21. 21. Everyone is involved in all aspects of analysis
  22. 22. Academics do the first 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. 23. People with learning disabilities 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. 24. Can we cope when some people in our space blur the boundaries?
  25. 25. Participatory research with people with high support needs: The Pushing and Blurring of Boundaries
  26. 26. Pushing boundaries
  27. 27. Visual methods
  28. 28. Multi-sensory methods
  29. 29. Multi-media methods
  30. 30. Story-telling as a method
  31. 31. Blurring boundaries
  32. 32. Changing our thinking about 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. 33. Changing our thinking about what counts as research
  34. 34. Changing our thinking about 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. 35. Participatory research as a 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. 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. 37. The way we do participatory research is influenced by our local contexts Here There

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