pushing the boundaries of participatory research with people with learning disabilities: what have...
DESCRIPTION
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 boundariesTRANSCRIPT
Towards Equal and active citizenship: pushing the boundaries of participatory research with people with learning disabilities
What have we learnt?
Jane Seale
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.
Analysis and Feedback
Spaces
Boundaries
A different space
• participatory research inhabits 'different spaces and offers different ways of seeing‘ (Cook,2012)
A shared space
AcademicResearchers
People with Learning Disabilities
Who shares the space?
AcademicResearchers
People with Learning Disabilities
Support Workers ?
Ethics Committees
Funders
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)
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 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).
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!
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)
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 things?
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
Standard Methods
Analysis Sheets
Disability Specific Methods
Lot in common, understandeach other betterBe aware of the rights of disabled peoplePeople should not be calledmongolidPeole should be equal
Emotion-Balloon
Thought-Balloon
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 19 important things that people had said
2. We all got together and talked about the 19 important things
University Co-Researcher Supporter
Co-Researcher with intellectual disability
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!
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 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”
Changing our thinking about what counts as research
Stories as co-constructed
Theories about storytellingwhat 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
&
Changing our thinking about methods
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
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.
The way we do participatory research is influenced by our local contexts
Here
There