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

1. Towards Equal and active
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 the space?
Academic
Researchers
People with
Learning
Disabilities
Support
Workers ?
Ethics
Committees
Funders

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. A space in which we push boundaries

9. A space in which we blur boundaries

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. 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. 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. Participatory Data Analysis:
The Pushing and Blurring of
Boundaries

14. Pushing boundaries

15. Observation and Video data
Making videos
So let’s see what
these themes mean
– how do support
workers do these
things?

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. Standard Methods
Analysis Sheets

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. Improvised Methods

20. Blurring Boundaries

21. Everyone is involved in all aspects of
analysis

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. 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. Can we cope when some people in
our space blur the boundaries?

25. Participatory research with
people with high support
needs: The Pushing and
Blurring of Boundaries

26. Pushing boundaries

27. Visual methods

28. Multi-sensory methods

29. Multi-media methods

30. Story-telling as a method

31. Blurring boundaries

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. Changing our thinking about what
counts as research

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. 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. 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 we do participatory research
is influenced by our local contexts
Here
There