Doing Research Inclusively, Doing Research Well? Report of the Study: Quality and Capacity in Inclusive Research With People With Learning Disabilities

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Report number: Accessible Report, Affiliation: ESRC
Cite this publication
Doing research inclusively,
doing research well?
Report of the study:
Quality and capacity in inclusive
research with people with learning
disabilities
Melanie Nind & Hilra Vinha, 2012
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 1
Acknowledgements Thank you!
This work was funded by the Economic and Social Research
Council grant RES-000-22-4423. We are grateful to the funder
and to everyone who was involved in the study and whose
ideas are included in this report. This includes a few who did
not wish to be named and the following:
Andrew Shirfield, Anita Eley, Ann Lewis, Becca Cooper, Bill
Gilpin, Carl Bridden, Catherine O’Byrne, Chloe-Brownlee-
Chapman, Craig Hart, David Bennett, David Burns, Duncan
Mitchell, Durbali Roy, Elizabeth Harkness, Emma Stone, Eric
Emerson, Gareth, Gordon Grant, Hazel Lawson, Howard Swift,
Ian Buchanan, Ian, Jan Walmsley, Jane Seale, John Dias,
Joyce Howarth, Julian Goodwin, Julie Davies, Karen Warner,
Kelley Johnson, Kelly, Kerrie Ford, Lisa Pointing, Liz Tilley, Lou
Townson, Malcom Eardley, Margaret Flynn, Margaret Szabo,
Melanie Chapman, Michael Scott, Nicola Grove, Nigel Taylor,
Rohhss Chapman, Ruth Shaw-Williams, Sarah Parsons, Suzy
Tucker, Tony Crosby, Tracey Taylor, Val Williams, Vicky Brown,
Vicky Mason, Will Longden.
Our thanks also go to the people who helped in other ways
especially Austin Bradshaw, Helen Graham, and Torhild Hearn.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 2
Contents
Summary key points ............................................................... 3
1. Introduction How to read the report ................................... 6
2. Beginnings Our aims and plans ...................................... 16
3. Research process - How we did the research ................... 21
4. Findings What we found out ............................................ 27
5. Conclusion What we think now ....................................... 47
References .............................................................................. 51
Appendices What we produced ........................................... 53
Appendix 1: Suggested reading .............................................. 53
Appendix 2: Focus group questioning route ............................ 56
Appendix 3: Research topics of participant-researchers ......... 58
Appendix 4: Funders ............................................................... 59
Appendix 5: Questions to ask yourself when judging the quality
of inclusive research with people with learning disabilities ..... 60
Appendix 6: Questions to ask yourself when working out how to
work together in inclusive research ......................................... 61
Appendix 7: Case studies Teaching and learning materials for
helping to guide practice ......................................................... 62
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 3
Summary key points
This report is a story of our research for anyone
interested.
The idea was to bring
together people doing
inclusive research
1
to
share and develop their
learning.
We wanted to work together
on a better understanding
of what it means to work
together on research and to
do it well.
Our method was talking
together in focus groups.
We made audio
recordings and
transcriptions and looked
for important themes.
We found out:
o About how people
research together -
approaches can be
1
Applying the definition of Walmsley & Johnson (2003)
Inclusive research
is research that
matters to people
with learning
disabilities, involves
and respects them
Focus groups are
small groups who
talk about ideas on
a research topic
Audio recordings
record voices so
they can be
listened to again
Transcriptions are
written records of
what was heard on
audio recordings
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 4
planned or responsive; they can stress giving
support, negotiating practices, or trusting each
other.
o Inclusive research is particularly good at
developing knowledge about people’s lives.
o There are many different ways of doing
research inclusively.
o Being involved in inclusive research leads to
new friendships and networks, new skills and
experiences, and feeling confident and valued.
o When people with learning
disabilities are involved in
research the questions can
be more relevant, the
methods more accessible,
and the findings more rich.
There is potential for social
inclusion and social change.
o There are barriers that still
need to be addressed for
inclusive research to have
a good future.
o Research is seen as good in terms of inclusion
and good in terms of generating knowledge
when it:
Accessible is
when something
can be used by
people of all
abilities.
Findings are what
we find out and
learn from a study.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 5
addresses questions that require an
inclusive approach
answers questions in the best way
makes use of insider knowledge of what it
is like to live with learning disabilities or a
label of learning disabilities
is genuine and meaningful
has impact on the lives of people with
learning disabilities.
We conclude that we are still
learning about inclusive
research. Everyone wants it
to do a lot for the people
involved. It is important that
we keep exploring and talking
about how we go about doing research
inclusively and doing it well.
Impact is making a
difference or
making something
happen because of
the research
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 6
1. Introduction How to read the
report
This report tells the story of the research. We hope
to share this story with everyone involved and
anyone who would like to know more about what
we have done. This report is available on our
website www.doingresearchinclusively.org.
We want this report to be self-advocates,
researchers and funders who are interested in how
research can be done inclusively. It is hard to write
a report that is right for everyone, but we hope this
works for you.
For some, jargon
is a technical
language that
they use in their
profession.
use of
difficult
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 7
We know this report has some hard words, but we
use plain English as much as we can. To help with
some of the hard words, we include a list of what
they mean here. We have added pictures and
examples to make it easier to read. Change (2009;
no date), The Learning Difficulties Research Team
(2006), The Plain Facts Team at Norah Fry and
others have produced reports that we could use as
good examples. Some of our participant-
researchers with learning disabilities also guided
us as to what was important to them.
Research terms and what they mean
Academic: activity in
universities or a person doing
the university activity
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 8
Accessibility: refers to ways of
getting to places, communicating,
and doing things that have fewer
barriers and more help to make
them open to everyone
Capacity building: improving the
ability of people and groups to do
things by improving skills,
knowledge and support
Conclusions: what you can say at the end of the research
based on what you found and thought was important
Consent: agreeing e.g. to take
part in the research or to be
named
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 9
Example
I then got involved in the
work Jan and others were
doing at the OU and realised
there was a whole world of
people with learning
disabilities out there
exploring their history and
that’s why I got involved in
participation. (Duncan)
Critical incidents: turning
points that make people
change how they think or act
Example
Becca: This is how we do it
isn’t it Michael.
Michael: It is yes, yes
Becca: We go from pulling
out ideas & stuff and then
somebody goes away
writing
Data: the information you
gather through research such
as people’s words
Example
Research process funding
RP/costing forms
RP/getting funding
RP/allocating funding
RP/contract
RP/deciding on funding
criteria
Data analysis: working out
what information gathered
through research means,
what is important and what is
interesting
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 10
Dissemination: telling people
about the research and what you
found e.g. through reports,
conferences, websites
Easyread: a method of using
words and pictures together to
make the message easier to
understand
Emancipatory research: research that helps those involved
make good changes to their lives by being in full control of the
research
Ethics: doing the right thing in research, treating people well
and not doing anything to harm them
Example
Again Helen created a
welcoming feeling as
people arrived.
Fieldnotes: notes a researcher
makes about what goes on while
they are collecting data
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 11
Example
People said inclusive
research is particularly
good at developing
knowledge about
people’s lives.
Findings: what the
researchers find out and learn
from a study
Focus groups: small
groups brought together to
talk and share views on a
topic
Inclusive research:
research that matters to
people with learning
disabilities, and that
involves and respects them
Informed consent: agreeing
to take part in something like
research, based on
understanding what is
involved and what will happen
to you and your information
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 12
Jargon: academic or
special language which is
not used in everyday life
Methods: the ways you go about finding things out (such as
interviews) or doing analysis (such as finding themes)
Objectives: What you want
to achieve or complete
Example
I can remember when
we did the workshop …
people signed up to it and
we ended up having to
Narrative: A story of
events and how the
person experienced
them
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 13
Participants: the people
that researchers get their
information from
Participant-researchers:
Participants who are also
researchers or co-
researching with you
Participatory methods:
methods where the
participants are involved in
decisions about the
research and the research
activity
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 14
Policy: Statement about
what is important and how
things will be done
Policy-makers: People who develop policies in organizations.
Research literature:
Books and papers in
journals about research or
explaining findings
Self-advocacy:
Standing up for yourself
and taking control of your
life
Stakeholders: people with an involvement and interest in
something
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 15
Theory: A way of thinking about or explaining information or
things happening in the world
If a word in the report is in bold type you should be able
to look back at this list for help with it. If you would like
something explained please phone Melanie on
023 8059 5813.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 16
2. Beginnings Our aims and
plans
The idea for the study
We know that it matters to people how research projects
begin (and who came up with the idea!). Therefore we
are honest about this here. The idea for this research
came to Melanie when she was writing another paper
(Nind, 2011). The idea, though, was influenced by
others. She was reading a lot about how people with
learning disabilities get involved in research. It seemed
that although many people were working on this they
were not getting together to share what they were
learning. There were examples of interesting projects
that were breaking down barriers to research for people
outside universities. There were papers written about
what was important and challenging when people with
learning disabilities and academics do research
together. (We list some of papers at the end - see
Appendix 1.) But Melanie thought it would be good for
everyone to come together to talk and to get an overall
picture. This would help us to think together about the
next steps too.
Within the research literature some writers make it
clear that some things need particular attention.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 17
The importance of the research
This led Melanie to see the value of
exploring the nature of partnership in research
discussing the things that are difficult to do and
difficult to talk about, and
looking at when and how inclusive research
becomes good research.
Simone Aspis (2002: 4), a self-advocate, argues, ‘How
many times have we heard that we are working in
partnership with people with learning disabilities? We
need to think about what that really means.’
Jan Walmsley & Kelley Johnson (2003: 12) reflect on a
‘stifling of debate about the real difficulties of including
people with learning disabilities in research’. They
called for more honest discussion.
Gordon Grant & Paul Ramcharan (2007) concluded that
we have enjoyed a first phase of learning practical
things about doing inclusive research. Now, though, the
time has come to find out more about the kinds of
knowledge we can develop through inclusive research
and how we can know that knowledge can be trusted.
They put on the agenda: ‘what forms of partnership
make inclusive research effective, and whether good
science and good inclusive research practice can be
brought together’ (p.12).
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 18
She thought a research council might want to support a
project like this because of policy changes. The UK
government had written about their vision for people with
learning disabilities as active citizens enjoying rights,
independence, choice and inclusion (DoH, 2001). The
Department of Health had, between 2001 and 2003,
spent £2 million on 13 studies. These were part of the
Learning Disability Research Initiative (LDRI) following
the Valuing People white paper. Therefore it would
make sense to fund this research to help make sure
money spent on inclusive research is spent wisely.
Aims and objectives
The aim of this research was to build knowledge and
capacity. Our steps, or objectives, were to:
Take stock
of what we
know about
people with
learning
disabilities
taking part
in research
about them
Produce
guidance to
help when
people with
learning
disabilities
are
workiing
together
with others
and on their
own doing
research
Develop
materials
and case
studies
based on
new
practices
Produce
criteria for
judging
quality in
inclusive
research.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 19
Guiding principles
We did not want to end up just repeating what others
have already said about inclusive research. Instead,
we wanted to bring together people with experience to:
talk
work through points of friction
create new knowledge from sharing knowledge.
We wanted to bring about the kind of talk that changes
things. Gergen (2009) calls this transformative dialogue.
We were convinced of value of this by the work of Paulo
Freire (1970).
This theory influenced the research. It led us to see
focus groups as a powerful way to connect the
emancipatory and participatory principles important to
inclusive researchers.
We did not want to research inclusive research in a
way that was against the spirit of inclusive research.
Yet there were compromises we had to make and with
Freire, a Brazilian educationalist, was passionate about
dialogue as creative and liberating. Freire challenges
oppressive practices (the emancipatory principle) and calls
for the liberation of oppressed groups by themselves (the
participatory principle) by consciousness built
collaboratively in dialogue.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 20
more money we could have done more to make the
research more inclusive. People with learning disabilities
were not involved at all the stages, but their ideas and
published work did influence the decisions we made
throughout. The bid for funding said we would answer
these research questions:
1. What does working in partnership with people with learning
disabilities as researchers really mean?
2. What kinds of knowledge are attributable to inclusive
research?
3. How can inclusive research and the outcomes of inclusive
research be assessed and authenticated?
4. What are the benefits of inclusive research to people with
learning disabilities and other stakeholders? Where do the
problems lie?
5. How might good science and good inclusive research
practice come together?
6. What can be added, from sharing and interrogating practice,
to current understanding of what inclusive research is?
Put more simply we set out to find out:
1. How do people work together as partners doing research?
2. What kinds of things do they find out about?
3. How can we know whether the research is good?
4. What good things come from doing inclusive research?
What makes it difficult to do?
5. What makes a piece of research good - for people judging
it for its research and its inclusive qualities?
6. What we can learn about inclusive research from coming
together to talk about it?
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 21
3. Research process - How we did
the research
Plan for the methods
We designed the research for maximum dialogue. This
meant a series of focus groups. The idea was that the
focus groups would involve people coming together who
do research from a common position. This would help
create a safe space to talk in. This idea was borrowed
from Madriz (2000) and Haw (2010) who had found it
effective for research involving hearing the voices of
groups with little power. We wanted to ease the process
of sharing and generating knowledge among the people
participating in the study. We refer to them as
participant-researchers to recognise their role as
participants and researchers.
We planned for a series of focus groups as shown below.
The idea was that the first 3 focus groups would meet 3
times, and involve the same people so as to build trust.
The focus groups would be audio recorded and there
would be gaps between to give time
for them to be transcribed
to reflect on the data
to plan the next line of questioning
to prepare visual materials and ideas to stimulate
the talk.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 22
Plan for the focus groups
We thought of the time and tasks as ‘dialogic (talking)
phases’ and ‘reflective (thinking) phases’.
The policy-makers and funders would meet once to
reflect on the ideas of the other groups and share their
own views.
The final meeting would be a chance for all the
participant-researchers to meet and form new
networks. They could pick out the findings that were
1. A focus group of
people with learning
disabilities who lead and
do research, possibly
aided by academic
researchers or
supporters 2. A focus group of
researchers with
and without
learning disabilities
who work together
as co-researchers
3. A focus group of
academic
researchers who
collect data from or
with people with
learning disabilities
4. A focus group of
people who make
policies and fund or
commission
research
5. A final meeting
where the different
groups come
together and talk in
mixed focus groups
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 23
most important to them and challenge anything they
were uncomfortable with.
The methods in action
The realities of putting this
plan into action meant that
there were some changes.
We invited people to take
part who we knew, whose
research we had read
about, and who other
people suggested to us.
Some of them said that as
they do research in
different ways they could fit
into more than one group
this is a problem when
putting labels on
researchers! When this
happened we asked them
to choose which group they
joined. They did partly
based on what interested
them most and partly on
which group was nearest to
get to.
The first focus group
became 2 focus groups, one meeting 3 times in Leeds
We were very glad to
have the involvement
of participant-
researchers from:
Carlisle People
First
Central England
People First
Change
Looking into Abuse
research team from
Wales
Heritage Lottery
Fund
Joseph Rowntree
Foundation
My Life My Choice
National
Development Team
for Inclusion
Voice Group at
Norah Fry
Work in Progress
team from Cornwall
Wigan & Leigh
People First
York People First
We were very glad to
have the involvement
of participant-
researchers from:
Carlisle People
First
Central England
People First
Change
Looking into Abuse
research team from
Wales
Heritage Lottery
Fund
Joseph Rowntree
Foundation
My Life My Choice
National
Development Team
for Inclusion
Voice Group at
Norah Fry
Work in Progress
team from Cornwall
Wigan & Leigh
People First
York People First
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 24
and 1 meeting twice in Bristol. This was partly so we
made sure we heard from people with learning
disabilities with different experiences of research, and
partly because travel from the south-west to the north of
England was costly and difficult.
The main groups were bigger than we first planned
because so many people were interested in taking part.
The same people did not always come every time as
fixing dates that everyone could make was impossible.
The thinking phases between the talking phases were
sometimes a bit short.
The focus group of policy-makers and funders was
smaller than we planned as some of the people who
said they would come could not make it at the last
minute.
The ethics of the research were important and ethics
approval was given by the University of Southampton.
The process of getting informed consent began with
the same materials for all participants explaining the
project in plain English. Mostly this was straightforward,
but 1 group challenged our assumption that people in
support roles would help with access to the information
where needed. In response we made some of our
materials more in line with the easyread that these
participant-researchers were more familiar and
comfortable with.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 25
Each focus group lasted about 2 hours. The
conversation started with sharing experiences and led
into questions about what makes inclusive research
challenging, possible, and of high quality. They ended
by agreeing themes to be returned to in a later meeting
or taken forward to a different focus group. (See
Appendix 2 for the questioning route.) The questioning
included topics under-developed in the literature:
how are people with high support needs/ profound
impairment involved in research?
what inclusive ways do people use to do data
analysis?
how do inclusive researchers use or develop
theory?
Data analysis focused on what would help to build
capacity in inclusive research. The transcripts,
fieldnotes, reflections and the materials produced were
all analysed. Key ideas, narratives, and critical
incidents were identified.
The findings were then shared, reflecting the different
voices involved.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 26
Gareth Elizabeth
Ann
We work together as a
team … we practise on it
Actually, disabled
people should be paid
for the research they do
I think that any
research, as long as
[it’s] conducted
ethically, is good in its
own right
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 27
4. Findings What we found out
1. How do people work together as partners
doing research?
Researcher-participants described how they worked
together and what was important to them in this. This
showed the importance of
dialogue for all the researcher-
participants and not just to us in
this project.
There was some agreement
though that the quality of the
teamwork or partnership was important, and that this
involved trust, openness and finding ways of working
that suit everybody.
Funders/policy-makers who judged research
applications looked for
a healthy partnership,
shared understanding
of inclusive research
and shared purpose.
Lots of journal articles
have included the
prickly issue of the
power dynamics when academic researchers and
researchers with learning disabilities work together. This
issue had not gone away for the people in this project.
We sat down together
to talk about it, what
has been done and
what hasn't been
done. (Craig)
Some projects would come as
partnership say between a
People First group and some
researchers locally or the
university. And this is where
you see them working best.
(Emma)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 28
Research teams worked using agreed principles,
customs or even rules.
For some it was important that ideas came from people
with learning disabilities.
Who initiates and who leads
was important. Participant-
researchers from
cooperative research
groups spoke of needing to agree group decisions.
The processes involved in researching together
inclusively were sometimes informal, such as being
social, having fun, and doing research in your spare time.
They were sometimes
formalised, such as dividing
out tasks, doing training, or
using a steering group.
Informal and formal
processes could go on
alongside each other in the
same team. Similarly,
participant-researchers
operated in a very
principled way and a
realistic way rather than just one or the other. Some
talked of taking risks, learning from mistakes, adapting
and compromising. Some talked of the hard slog of
getting their research funded and working as they
wanted.
I went away and put it [the
proposal] together then
took it back to say have I
got it right. It was part of
what I did, but I checked
out how I did, just to make
sure it of it. So I had the
method bit about how to do
it but the ideas came from
self-advocates. (Julie)
Ideas have to come from
members of the group and
there’s this research cycle
we go through. (Rohhss)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 29
There was much talk of the
processes group members
went through together:
selecting interesting
articles to read together,
running focus groups
together, writing together,
reflecting together, and
working closely with the
funder. There were also times when tasks were divided
out with some research group members reporting back.
Researchers from inside and outside universities and
the people who supported others worked together in
various ways. Any one of them could be in the role of
bringing knowledge, skills or practical support.
An important idea to come from the focus groups was
that academic researchers, researchers with learning
disabilities or people offering support could provide a
bridge into new worlds.
Carl’s demonstration of the bridge idea
We make that decision as a
group then … in an ideal
world it would be great if all
the ideas came out of the
group, but that would mean
we would lose an awful lot
of things that were not our
idea (Chloe)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 30
To make sense of the different ways of researching
together we developed a model a kind of mental
picture as shown below. Formalised ways of working
together and improvised ways are very different, so they
are at either ends of the model. Formalised approaches
involve doing things in a pre-planned or rule-bound way
while improvised approaches involve co-working and co-
learning worked out ‘in the moment’ and in response to
specific challenges.
Model of different ways of researching together
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 31
Ian’s People First group had a formalised approach,
while Will valued something different. Another
researcher describes this in practice: “but when I get in
the field … I start adapting
my methods”.
Support, negotiation and interdependence are at the
core of working together. In a model that stresses
support some people work in support of others. People
with learning difficulties may be seen as doing the
research work; they are the experts by experience, the
decision-makers and leaders supported by support
workers or academics. Support may be with writing,
transport, making arrangements, understanding jargon
and so on. People holding support roles may be unsure
of their right to speak for themselves and sometimes
borrow the power of the person they support to make
I am the one basically
cracking the whip. Got to
get things done. …You
know the format. You know
what is going to happen.
You’ve got to make it
happen. Sometimes got to
be flexible but you are
answerable …
You set out
your stall. You have to
ensure that you try to
deliver. Steering group, we
meet every so often.
Report what you’ve done.
(Ian)
I view improvisation as the
greatest possible skill
which could be developed
and shared in terms of
inclusive practice. (Will)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 32
their voice heard. Equally, academics may see
themselves as doing the main work and recruit people
with learning disabilities to support their research with
their insights, access to networks, help with making
research tools accessible and so on.
In a model that stresses negotiation put effort into
agreeing how to work together. The negotiation may be
between people whose power and right to speak are
very unbalanced or on more equal terms.
In a model that stresses interdependency model there is
support and negotiation, but more crucially people
working together enjoy cooperation in what they see as
teamwork. There are high levels of trust and
communication and much work is put in to ensure all
voices are heard and none are dominant. Knowledge is
Lisa: We are one big team. So I think it’s a good idea to ask
the support workers what they think.
Gareth: …because at the end of the day it is how Kerrie and
Lisa, it’s their lives.
Mel: Yes, but they’re saying what do the support workers
think.
Gareth: Yes, but the thing is they're only there for support.
They can only make any judgement on if they've achieved
something.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 33
shared and value is placed
on listening to, and
learning from, each other.
What kinds of things do inclusive researchers
find out about?
The research answered this second question in two
ways:
By bringing so many researchers together we could
see the range of topics being researched (see
Appendix 3) and the range of knowledge they are
likely to produce.
By talking about what makes inclusive research
special we could see it as good for getting particular
kinds of knowledge.
Together these suggest that inclusive research
generates knowledge about and for people with learning
disabilities, and knowledge that is based on lived
experience. The lives of people with learning disabilities
was by far the largest focus of interest. On the whole,
researchers with learning disabilities did not get funded
We work as a co-operative
so every member of the
research team is an equal
member, which is different
from some other inclusive
research groups (Chloe)
The interdependency is
very important (Jan)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 34
to do research unconnected to their lives but had some
interest in doing so.
Some focus group discussions covered ways of
knowing and what counts as knowledge. These
discussions pointed to
different ways of knowing
rather than better or worse
ways of knowing. Knowledge
for academic researchers
might be different from
knowledge ‘for’ and ‘about’
people with learning
disabilities.
Sometimes studies might
lead to knowledge new to the
inclusive researchers
involved but not new in terms
of the research literature.
This makes it difficult to get
published in journals. Mostly
though, what makes the
knowledge distinctive is that
it is based on people’s lives.
It is grounded in experience.
It is authentic or meaningful
and uses and extends knowledge of the culture of
learning disability. This makes it useful rather than just
interesting knowledge.
What counts as
knowledge? And what
knowledge counts? …
We are still stuck in this
thing about hierarchies
of evidence, peer
reviewed, non peer
reviewed, journal
ranking, and all the rest
of it … the inclusive
research project is to
me very much about
relational practice, it’s
about pluralities of
knowledge and people
valuing and recognizing
that and not putting one
set of voices above
another. (Gordon)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 35
How can we know whether the research is
good?
The third research question was about how we can
know the value of inclusive research. Focus groups
discussed how to recognise quality in inclusive research.
Examples were research that was relevant and
interesting to people with learning disabilities, involved
them meaningfully and throughout and made their lives
better. These things were valued particularly by
researchers with learning disabilities and their
supporters.
Carl Durbali
Michael Becca
It must be a relevant topic … ask
the right questions
Everybody
has to be
involved
It is also about getting the
information across
Accessible.
Plain
English
Feedback
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 36
Quality was also talked about in terms of research that
generated the best evidence and used the best methods,
that was enjoyable, new in some way, honest and clear.
Participant-researchers were aware of what was
valued in universities impact and publications. The
policy-makers/funders particularly valued the quality of
the partnership and its impact and benefits.
They look for researchers asking the right questions,
clear and flexible plans, value for money, and money
reaching all the partners. Other funders might look for a
track record and good evaluations in previous studies.
It became very clear that everyone want sinclusive
research to do a lot of things:
create knowledge (the research goal)
give voice and build self-advocacy (the political goal)
Emma: There is something about you wanting to invest and
see it as process through people getting involved as co-
researchers shaping all aspects of themselves, part of
bringing around changing their own lives, the lives of the
group, life beyond the research output, that is added value
that comes of something that is co-produced
Tony: Yes, certainly one of the things that we look for in an
application is that it is not just a project that has a beginning
and an end, and that's the end of it, but it's the sustainability
it's what happens afterwards.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 37
bring funding to organizations (the practical,
sustainability goal)
provide training, skills, jobs, networks, and
friendships (the wider agenda)
The funders and policy-makers who support inclusive
research were as interested in the wider agenda as the
researchers themselves they wanted more from their
money than the generation of knowledge. This may
separate them from other funding bodies who do not yet
fund inclusive research and who may have a different
vision of what they what to fund. The participant-
researchers had received grants from a small number
of funders (see Appendix 4).
We need to think about the broad and varied goals
when judging the quality of the research. In Appendix 5
we suggest a series of questions to ask yourself to aid
this process. This helps us to avoid imposing ways of
judging research that are important to just one group on
to everyone.
Some participant-researchers struggled with meeting
quality criteria associated with funded research that was
not inclusive while still trying to be inclusive.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 38
What good things come from doing inclusive
research?
For many participant-researchers the benefits of doing
research were about making friends, learning new skills,
doing something useful, feeling valued, gaining
confidence and experience. Doing research could also
bring much needed funding to their self-advocacy
organizations. The benefits extended to the difference
the research could make to improve other people’s lives
and to change practices.
John Kerrie
Making lots of friends and all that
We feel valued and
they learn something
about us
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 39
We talked about where inclusive research had more
value compared with other kinds of research. Often the
value added by the researchers with learning disabilities:
their voice, experiences, thoughts and feelings, and
cultural knowledge of things like day centres, institutions
and personal assistants. Also important was their ability
to connect with, and create a comfortable feeling for,
research participants with learning disabilities.
One line of argument was that
to address some research
questions inclusive research
was the only way to get to the
data and do it properly. Another
was that people reading the
research might be more likely
to listen and take note.
There was also awareness of
the limitations of inclusive
research the questions it
could not answer.
I think people don't
listen to you because
they think, oh well
yeah yeah ok that's
just another birdie
talking off on a roof
top, whereas if people
with learning
difficulties are doing
the research people
from the older
generation might think,
shock horror, these
people should be in
the institution but
they're doing research,
we better listen to
them because it's like,
shock horror (Kerrie)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 40
What makes inclusive research difficult to do?
Many barriers to doing inclusive research were
identified. We grouped these barriers into:
Attitudinal barriers, such as funders’ lack of
knowledge or understanding, their inflexibility, their
low expectations of what people with learning
disabilities can do, and their failure to learn or
change. There were also general attitudes about
protecting people with learning disabilities or not
valuing their input.
Barriers in the social process, such as the barriers
put up by universities protecting their territory,
inaccessible calls to tender for projects and few
routes into research for people with learning
disabilities. Some barriers were put up by
individuals and some were rule-based such as
rules about tenders, formal ethics and governance
requirements, online submission to journals, and
the need for police checks.
Material barriers, such as of transport and
information, lack of funding for preparatory work
(which was important to the cherished value of
involving people with learning disabilities at all
stages), inadequate funding more widely, and rules
associated with people’s benefits payments making
short-term paid research risky.
Within-person barriers, such as literacy difficulties.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 41
Mostly people were reluctant to discuss barriers as
existing within people. Academic researchers did admit
gaps in their skills that they got help with, e.g. Irene
reflected “if I want to get my statistics analysed I talk to a
statistician”. Curiosity, though, was identified as crucial
for research and lack of it as a barrier for anyone. The
strong message was that problems associated with
inclusive research do not lie with people with learning
disabilities.
Accessibility was a big issue.
Making the research process
accessible includes:
accessible application
forms/ electronic paperwork
feedback on bids
information from funders
ethics and consent forms
methods
transcripts
ideas
theories
language
acronyms (like ESRC) and
jargon.
Ways of achieving this were similar to ways of making
the research products accessible (see box below).
Taking people’s preferences into account and allowing
The literature
review … was written
so people with learning
disabilities could
understand it (Joyce).
We've done easy read
information sheets,
easy read information
DVD, and a testing
(Karen)
People with visual
impairments … were
saying that our
electronic paperwork is
not as accessible as it
should be (Tony)
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 42
time for learning about research
and to gain understanding were
also stressed.
Most importantly, in terms of
where the problems lie, there
was concern about the
sustainability of inclusive
research its future. The
funders/ policy-makers spoke
of the cultural shift associated
with policy support for inclusive
research. They suggested there
had been a creeping, positive
influence. The people doing
research, though, identified
some of the on-going
challenges involved in bringing
together researchers from
different backgrounds. This
includes tackling tokenism, rigid
governance, and low funding odds. The pleasure of
doing inclusive research was clear to see, but so too
was the hard work involved with discussing difficult
things, negotiating sensitive ground, keeping
relationships going, finding ways to get published, and
learning the unspoken rules of the research community.
The future for inclusive research was seen as
threatened by lack of funding, lack of capacity in the
system, and lack of support for People First groups.
Accessible
products of
research included:
- accessible title,
accessible report
(with pictures,
plain English and
avoidance of
jargon), accessible
post-research
resources,
easyread versions,
versions in
different formats,
languages and
font sizes,
multimedia outputs
(video/DVD/drama
/ websites/
YouTube).
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 43
What makes a piece of research good - for
people judging it for its research and its
inclusive qualities?
After doing inclusive research for many years, Val is
clear: “there is no right way of doing it”. We could see
that what makes good research from a funding council
point of view differed from what makes good research
from the point of view of self-advocates. A research
proposal from an academic researcher might look very
different from a research proposal from a self-advocacy
group or research cooperative. This would apply to
research reports too.
This can leave whoever is awarding the grant, or
grading the research, with an impossible task. Each
approach has its own merits and they are difficult to
compare. Through dialogue we found our vision of good
social science research practice meets with our vision of
good inclusive research practice when:
1) The research answers questions we could not
otherwise answer, but that are important.
2) The research reaches participants, communities
and knowledge, in ways that we could not
otherwise access.
3) The research involves using and reflecting on the
insider, cultural knowledge of people with learning
disabilities
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 44
4) The research is authentic (recognised by the
people involved)
5) The research makes impact on the lives of people
with learning disabilities.
What we can learn about inclusive research
from coming together to talk about it?
In some ways the answers to the other research
questions above already answered this one. We know
that individual accounts of inclusive research are
important, but the big picture from this study tells both of
how far inclusive research has come, and how far there
is yet to go.
People with learning disabilities are
shaping and judging research proposals
managing and conducting research
writing, editing and reviewing papers and books.
But while some researchers are pushing forward into
new territory:
many continue to be involved in arguments about
accessibility and power dynamics
the number of funders who support inclusive
research is limited
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 45
if you are someone who is learning disabled the
routes into becoming a researcher and building a
research career are very much reduced
the future of inclusive research is not secure.
This study brought these tensions into sharp relief.
The focus group dialogue also generated knowledge not
fully discussed above. This includes the various
identities and relationships with research. Participant-
researchers spoke of themselves as:
team member
co-researcher
inclusive researcher
advocate for inclusive research
proper researcher
lead researcher
expert by experience
research supporter
research coordinator
research advisor.
There were research teams, groups, partnerships, a
cooperative, and a whole set of terms being used as
people involved in inclusive research struggled to
explain their work.
The focus groups also exposed some of the differences
between academics and researchers with learning
disabilities. For example, there were different routes into
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 46
research, career paths and opportunities, different job
titles, roles and rates of pay. Networks were often
different and the relationships with research might be
different - for people with learning disabilities the
research could be more personal and overlap with
advocacy work and campaigning. Sometimes the
differences were about working for a university or not.
On balance though, participant-researchers preferred
to stress that which they shared in common.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 47
5. Conclusion What we think now
This was a very stimulating study. It provoked a lot of
new thinking, though sometimes the difficult areas
remained unspoken about. We were challenged,
enthused, and inspired by the many different ways in
which people strive to do research inclusively. In this
report we have focused mostly on the knowledge
aspects. In the appendices there are some materials
and case studies that we hope will be useful, but the
website provides many more (see
www.doingresearchinclusively.org).
In conclusion, we make three main points:
1. We have made great strides, but we are still
learning about inclusive research. There are
people we can learn from who have years of
experience. They have taken bold steps and they
carry the status of expert in some ways. But they
are still learning too. This means that the dialogue
about what good inclusive research means to us
needs to carry on.
2. Inclusive research has taken hold in pockets, but
the argument for the distinctive contribution that
inclusive research can and does make is still in
development and yet to be heard by many. This
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 48
means that we need to take our dialogue about
inclusive research to new audiences. We need to
talk with children, older people, people with mental
health problems, and many others who are doing
participatory/emancipatory/inclusive research and
learn from and with them.
3. There are many different ways of doing and
understanding our research practices as inclusive.
We also want different things from this research.
This means it is not wise to try to fix one way of
doing things and call that, and nothing else,
inclusive research. We know the danger of putting
labels on things. So, we see the way forward as
talking more about recognising when inclusive
research is good quality, and at the same time
keeping room in our ideas about this for differences
in approach.
We wanted this research to be about dialogue and
different voices. Therefore we end the report with some
different ideas about what inclusive research means to
people in pictures and words. We completed this report
3 months after the last focus group and we see it not as
the final word, but as a new basis for dialogue.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 49
Ingredients of inclusive research
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 50
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 51
References
Aspis, S. (2002) Self-advocacy: vested interests and
misunderstandings, British Journal of Learning
Disabilities 30: 3-7.
CHANGE (no date) How to make information accessible:
A guide to producing easy read documents. CHANGE.
CHANGE (2009) Talking about sex and relationships:
the views of young people with learning disabilities.
CHANGE.
DoH (Department of Health) (2001) Valuing people: a
new strategy for learning disability for the 21st century,
London, The Stationery Office.
Freire, P. (1970) Pedagogy of the Oppressed. New York:
Continuum.
Gergen, K.L. (2009) An Invitation to Social Construction.
London: Sage.
Grant, G. and Ramcharan, P. (2007) Valuing People
and Research: The Learning Disability Research
Initiative. Overview Report. DoH.
Haw, K. (2010) Using video as a trigger: Facilitating
participation in research with hard to reach groups,
presented at: Potential & possibilities: Using video
stimulated recall and related methods in research.
University of Southampton, 28 Jan 2010.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 52
Madriz, E. (2000) Focus groups in feminist research, in
N.K. Denzin and Y.S. Lincoln (eds) Handbook of
Qualitative Research (2nd edn) (pp.835-850).
Thousand Oaks, CA: Sage.
Nind, M. (2011) Participatory data analysis: A step too
far? Qualitative Research 11: 349-63.
The Learning Disabilities Research Team (2006) Let me
in I’m a researcher. DoH.
Walmsley, J. and Johnson, K. (2003) Inclusive research
with people with learning disabilities: Past, present
and futures. London: Jessica Kingsley.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 53
Appendices What we produced
Appendix 1: Suggested reading
At the time of writing this report some of our participant-
researchers, with their colleagues, saw the publication of their
special edition of British Journal of Learning Disabilities, the
first to be fully edited and peer reviewed by a partnership of
learning disabled researchers and academics. The challenging
of established practices and breaking down of barriers was
happening all around us! We therefore recommend the whole
of BJLD volume 40, number 2. Our other suggestions for
further reading are just a handful of what is available but they
show a range of approaches used by participant-researchers in
this study and some of the issues they have been writing about.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 54
Atkinson, D. (2005) Research as Social Work: Participatory
research in learning disability, British Journal of Social Work,
35: 425-434
Abell, S. and others (2007) ‘Including Everyone in Research:
The Burton Street Group’, British Journal of Learning
Disabilities 35: 121-24.
Boxall, K. and Ralph, S. (2011) Research ethics committees
and the benefits of involving people with profound and multiple
learning disabilities in research, British Journal of Learning
Disabilities, 11: 173-80.
Emerson, E., Malam, S., Davies, I. and Spencer, K. (2005)
Adults with learning difficulties in England 2003/4.
Garbutt, R. and others (2010) Accessible article: involving
people with learning disabilities in research, British Journal of
Learning Disabilities 38: 21-34.
Grant, G. and Ramcharan, P. (2009) Valuing People and
research: outcomes from the Learning Disability Research
Initiative, Tizard Learning Disability Review 14: 25-34.
Johnson, K. (2009) No longer researching about us without us:
A researcher’s reflection on rights and in inclusive research in
Ireland, British Journal of Learning Disabilities 37: 250-56.
Lewis, A.L. and others (2008) Reference, or advisory, groups
involving disabled people: reflections from three contrasting
research projects, British Journal of Special Education 35: 78
84.
McClimens, A. (2008) This is my truth, tell me yours: exploring
the internal tensions with collaborative learning disability
research, British Journal of Learning Disabilities 36: 271-76.
Minkes, J., Townsley, R., Weston, C. and Williams, C. (1995)
‘Having a Voice: Involving People with Learning Difficulties in
Research’, British Journal of Learning Disabilities 23: 94-97.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 55
Nind, M. (2011) Participatory data analysis: A step too far?,
Qualitative Research 11: 349-63.
Shoeters, L. and others (2005) Partnership working between
university researchers and self-advocacy organizations: 'A way
forward for inclusion?' in England, Journal of Intellectual
Disabilities 9: 345-37
Stalker (1998) ‘Some Ethical and Methodological Issues in
Research with People with Learning Difficulties’, Disability &
Society 13: 5-19.
The Learning Disabilities Research Team (2006) Let me in
I’m a researcher. DoH
Townson, L. and others (2004). We are all in the same boat:
doing ‘People-led Research’. British Journal of Learning
Disabilities 32: 72-76.
Walmsley J. (2004) Inclusive Research in Learning Disability:
the (non disabled) researcher’s role British Journal of Learning
Disabilities 32: 65-71.
Walmsley J. (2010) Research and emancipation: Prospects
and Problems. In Grant, G. and others (eds) Learning disability:
A lifecycle approach (2nd edition) Maidenhead: Open
University Press.
Walmsley, J. and Johnson, K. (2003) Inclusive research with
people with learning disabilities: Past, present and futures.
London: Jessica Kingsley.
Williams, V. (1999). Researching together. British Journal of
Learning Disabilities 27: 48-51.
Williams, V. and Simons, K. (2005) More Researching
Together: The Role of Non-Disabled Researchers in Working
with People First Members, British Journal of Learning
Disabilities 33: 6-14.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 56
Appendix 2: Focus group questioning route
Encounter 1 Story-based
Encounter 2 Reflecting
Encounter 3 Gap areas
Opening invitation
‘Please go round and say who
you are and how you became a
researcher; share any material
you’ve brought along with you’
(round robin to warm up so all
voices are heard and audio
recorded with name; research
stories/life stories/gaining some
context)
Opening invitation
‘Please go round and say who
you are and something nice
that’s happened since we last
met can be about your
research or something else’ OR
‘and respond to X stimulus from
last time/FGX)’
(hearing each voice; re-forming
the relationships)
Opening invitation
‘Please go round and say who
you are and what you think
about X stimulus material’
(hearing each voice, opening
up ideas about analysis)
Main section
What research are you
doing now and how did you
come up with the idea?
(prompting research stories;
getting at rationale, goals, early
processes)
How did you go about
designing the research?
(prompting research stories
about process, collaboration,
free form comments on what
went well and what was
challenging; leading into
specific prompts)
What has worked well?
What have the challenges
been?
(then getting deeper into stories
motivations about motivations
and personal success criteria)
What did you hope to get
out of the research?
(follow up)
Did you get what you
wanted? (Why/How?)
(trying out abstracting from the
stories)
What made it good
research?
Main section
What different kinds of
research have people in the
group done?
(opening up diversity of topics
and methods)
What have you found out
about?
(clarifying topics and probing
types of knowledge)
Were your projects
successful projects what
made them successful?
(using success to help clarify
criteria and link back to
goals/purposes)
Would you judge this to be
good research?
(getting at own quality criteria;
prompt to reflect on own project
and interesting projects that
have arisen; use prompt)
Why?
Who else might judge your
research? Would they see it
as good?
(getting at different
audiences/purposes/quality
criteria/knowledges)
Main section
When you analyse/make
sense of the findings how
do you share out the tasks?
How do you check your
interpretations with your
research participants?
What concepts or theories
do you find useful?
(may need to differentiate
PMLD topic for FG1)
Can everyone be a
researcher?
Can everyone give
research data?
What do you need to be a
researcher?
(or for FG3, or mix)
Has anyone done research
involving people with
profound and multiple
disabilities?
What were you trying to find
out?
How did you go about it?
(addressing the gaps outlined in
the bid)
What has not been covered
in the focus groups that you
would like us to discuss?
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 57
End section going forward
What would you like us to
take forward for next time?
What would you like us to
take to the other focus
groups to discuss?
End section going forward
What would you like us to
take forward for next time/
take to the other groups?
What has not been covered
in the focus groups that
want included?
End section going forward
What would you like us to
take forward to the policy
makers focus group?
What would you like to see
go into guidance?
Potential stimulus materials:
Anything the researcher-
participants have brought
with them about their work
Our digital story
Participant info sheets &
consent forms
Powerpoint slides
Quotes from participants
from prior work
Potential stimulus materials:
Anything the researcher-
participants have brought
with them about their work
Powerpoint slides
Quotes/ digital story from
transcripts of first
encounters
Potential stimulus materials:
Open areas for analysis:
Key concepts (and how
we know they are key)
Core narratives
Critical incidents
Emerging patterns
Open areas for analysis:
Key concepts (and how
we know they are key)
Core narratives
Critical incidents
Emerging patterns
Open areas for analysis:
Key concepts (and how
we know they are key)
Core narratives
Critical incidents
Emerging patterns
Key areas for analysis:
1. How is working in
partnership described
and understood?
2. What are the processes
for generating and co-
constructing research
questions and research
designs?
3. How do participants
from the same research
team function together?
4. What do the focus
group dynamics tell us
about partnership
work?
5. What kinds of
knowledge are referred
to in relation to these
participants’ research?
6. What benefits from
doing the research are
described? For the
researchers? For their
participants? For other
stakeholders?
Key areas for analysis:
7. Qs from encounter 1
(particularly (i) & (iv)
plus:
8. How is good research
conceptualised?
9. Which research
purposes are referred
to and emphasised?
10. What success criteria
are suggested?
11. How are the needs of
different audiences
understood and
balanced?
12. What agendas emerge
from the researcher-
participants
themselves?
Key areas for analysis:
13. Qs from encounters 1 &
2 plus:
14. What does working in
partnership mean in
terms of analysis?
15. How is analysis
understood?
16. How is analysis
conducted?
17. How do participants talk
about the role of theory
in their research?
18. What does more
profound impairment
mean for working
inclusively?
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 58
Appendix 3: Research topics of participant-
researchers
Lives of people with learning disabilities
Lives of others
People with learning
disabilities
Our lives and
communities
My life/life stories
Life in institutions
People’s lives
Relationships
Friendships
Social lives
Dating
My family
Family trees
Health, wellbeing,
lifestyle, opportunities
Sterilisation
Support around
cancer
Breaking bad news
Patient safety
What people with
learning disabilities
understand about
abuse
Support workers
Personal assistants
Experiences of people
without learning
disabilities
How able-bodied
people see us
Self-advocacy
Self-advocacy groups
& social media
Advocacy
Resistance songs
Direct payments
Wartime memories
Hidden heritage
History of People First
Groups
People with learning disabilities or all people?
Autism
Access for people with visual impairment
Children’s lives, friendships, participation
Services
Other
How to change services
Services for BME groups
Support
Bereavement support
Health checks
Musical instruments
Access
Work
Research agenda
Identity
History (of an institution)
Research development
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 59
Appendix 4: Funders
Funders of research in
which people with learning
disabilities led or were major
collaborators
Funders of research in
which academics or people
without a label of learning
disabilities led
Heritage Lottery Fund
National Lottery
Joseph Rowntree Foundation
Northern Rock Foundation
Advocacy Sparks
Oxford Council
Disability Rights Commission
Economic & Social Research
Council
Arts Council
National Children’s Bureau
BBC Children in Need
Epilepsy Action
Department of Health
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 60
Appendix 5: Questions to ask yourself when judging the
quality of inclusive research with people with learning
disabilities
1. Is the topic relevant to the lives of people with learning
disabilities and interesting to them? Could it become relevant?
2. Does the research involve people with learning disabilities in a
meaningful and active way?
3. Are the participants in the research treated with respect?
4. Is the research communicated in a way people with learning
disabilities can understand and respond to?
5. Is there honesty and transparency about everyone’s role and
contribution?
6. Were the ways of working carefully thought through and
adapted in response to needs?
7. Does the research create worthwhile knowledge?
8. Are there likely long-term wider benefits for the people
involved e.g. new networks, skills, funds, roles, social
inclusion?
9. Are the research questions the kind that inclusive research
can best answer?
10. Does the research reach participants, communities and
knowledge that other research could not reach?
11. Does the research use, and reflect on, the insider
cultural knowledge of people with learning disabilities?
12. Is the research genuine and meaningful?
13. Will the research make impact that people with learning
disabilities value?
Note: These are questions to provoke reflection and discussion. They could be
answered ‘yes’, ‘no’, ‘yes but’, ‘possibly’, ‘in some ways’, ‘it depends’. Any overall
judgement will be informed by ideas generated by the researcher-participants in this
project. This approach (rather than specified criteria) reflects our conclusion that
there are many ways of doing research inclusively, different perspectives on what
makes it good, and a need to keep our thinking flexible while we are still learning.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 61
Appendix 6: Questions to ask yourself when working out
how to work together in inclusive research
1. Why are you working together on the research? Do you have
a shared purpose, or do you want different things from it?
2. What do you each understand inclusive research to be?
3. What values guide the way you want to work together? How
will you put those values into action?
4. What terms will you use to describe yourselves? (co-
researchers, partners, team members etc) What does your
choice of the terms say about you?
5. How will you talk about the research? (How often, where etc)
6. Who is setting the agenda?
7. Does everyone have equal right to speak? How will you make
sure everyone is heard?
8. What skills, knowledge and qualities do each of you offer?
9. What will you do together and what tasks will you need to
divide out?
10. What can you plan in advance and where might you
need to adapt as you go along?
11. What kinds of support are needed?
12. How will you work through differences of opinion and
challenges?
13. How will you learn from each other?
14. Are you placing most importance on support, on
negotiation or on interdependence?
15. What will work best for this particular project at this time?
Note: These are questions to provoke reflection and discussion. The
research indicates that there are many different ways of working
together rather than one right way. Many research teams have
developed their practices over time and work differently on different
projects and so the research context and the research question are
important.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 62
Appendix 7: Case studies Teaching and learning
materials for helping to guide practice
The following case studies are drawn from the data. They are
not case studies of individual projects as there are plenty of
those in the research literature already. Reflecting the particular
nature of this research they are case studies of dialogue that
we think shed light on inclusive research in useful ways.
We suggest that among the questions to ask yourself when
using the case study material you might like to think about:
1. What does this tell us about what is important in inclusive
research?
2. What does this say about how the differences in power are
managed?
3. What values seem to be guiding this way of working?
4. What practical lessons can be learned from this example?
Case study 1: Identities
Hilra introduces the focus group (made up of self-advocacy
groups who get involved in doing research) to an activity about
who they are and what they do. They have visual materials to
work with including prepared labels, blank cards and pens.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 63
Carl points to the label person with a learning disability and
comments, ‘I could agree with that. Individually we are that.’
Durbali then reflects, ‘You have to think what you are doing.
Are you campaigning for learning disability or not?’ Becca
asserts, ‘I want to be a human being’, which is met with good-
humoured cheering. Durbali asks, ‘Can you do a black person
with learning disability or not?’ Exploring the available labels
further Becca observes that the professionals say learning
disabilities they say learning difficulties, and Julie points out
that their group use learning disabilities more. Then Carl picks
out a new identity for himself, pointing the label researcher he
says ‘I am one of these’. Hilra asks if anyone is a co-researcher
and Durbali responds that she calls herself a member, and Carl
that he calls himself a researcher or a team member. He goes
on, ‘I know this is so wrong now, but I don't want you to laugh
at me, but, I suppose that one (pointing to the label inclusive
researcher) sounds better, it makes you look clever … it
sounds better if you have inclusive researcher, it sounds clever.
Case study 2: Research funding
This focus group of people with learning disabilities doing
funded research projects and people who are involved in the
research with them are discussing their work. It is their first
meeting and the group is rather big. Their talk includes how
they work together and how they secured their funding. One
group are at an exciting stage of their project, Looking into
Abuse. Davy describes himself as part of the project and Karen,
his personal assistant confirms that he is one of 3 co-
researchers employed on the research. Joyce, a researcher
who has been involved longest, tells the story from the
beginning: ‘The idea for the project came from a group with
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 64
learning disabilities who advise the teaching nursing section of
the university, where they have a session on what research is
and they said well we want to do research’; abuse came up as
the most important thing to look at. It took them 7 years and lots
of attempts to get research funding after their first application to
the Lottery was unsuccessful. They were encouraged to keep
trying by a person with learning disabilities who chairs the
research advisory group. Joyce explains, ‘We also got money
from an organisation in Wales to pay me, luckily, to write the
project outline with people with learning disabilities, so people
were involved from everything from the very first thought of it
right through to the co-researchers and people are still involved
on a voluntary basis.
Tracey talks about the campaigning work they do in My Life, My
Choice, but Kerrie wants to know why it took so long to get
funding for the abuse research. Joyce explains ‘it also took
seven years because people with learning disabilities were
involved in writing it, who could meet once a month, and it took
a long time to write everything that you have to write for a
research project, including the literature review which is when
you look what was done before it, all that was written so people
with learning disabilities involved could understand it.’ Tracey
explains how they won funding from Oxford City Council after
doing a presentation with role play.
Suzy, the research co-ordinator for another group of co-
researchers and their project, Work in Progress, tells their story:
‘I heard the Lottery were funding research projects and … we
knew that from the research that Norah Fry had done before
that employment was important to people, we also knew locally
in Cornwall it was important to people … I desperately wanted
to do inclusive research … so we wrote, well you [referring to
Val experienced colleague] wrote most it’. She continues,
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 65
much to our amazement, we just got it and I was expecting a
huge telephone interview and interrogation. I remember calling
you [Val] saying we got it and you said 'what do you mean
we've got it?' [laughter].
Tracy says that someone helps them get money in My Life, My
Choice and a supporter tells the story of how a professor from
the Open University identifies funding opportunities and asks if
they want to get involved, which goes to the trustees to discuss.
Ideally they would prefer to work from the grass roots, but as a
charity they weigh up whether what is proposed will get people
with learning disabilities involved, get them paid, improve their
skills, and so on.
Case study 3: Academic voices
Members of the focus group of academics introduce
themselves and their work. Liz reflects back on her PhD on the
history of Mencap: three or four months in I explored whether I
could make it a more inclusive project and realised that I was
too late and really that should have been something that should
have informed the proposal from the start. Irene talks about her
work at St George’s Medical School where they employ two
people with learning disabilities on training and research as
advisors initially, now as co-researchers, and that they couldn’t
do their work properly without them. Will talks about his PhD
using inclusive participatory design making bespoke musical
instruments for disabled players. Hazel describes her efforts to
involve people with profound and multiple learning disabilities
and Jane recounts convening an inclusive seminar series.
Another (anonymised) researcher explains the necessity of
involving people with learning disabilities to find the answers to
her research question about resistance songs in long stay
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 66
institutions, and her use of mobile interviews as a method.
Sarah talks about her starting point being her interest in hearing
disabled children’s voices and moving on to participatory
design. Gordon says, ‘I think I stumbled into more inclusive
forms of research by making mistakes’; he reflects back on how
at first he was not translating inclusive policy principles into his
research practices until ‘the penny dropped’. Ann relates feeling
her way through particular projects that pushed her to consider
what were ‘authentic, trustworthy, credible approaches’. The
group talk about obstacles for them: the expectations of certain
disciplines, funders, ethics boards and universities, and how
the money is rarely enough to be as inclusive as they want to
be. They discuss their personal integrity and also what they
gain from their research, which may not be the same for the
people they do their research with. The quality of the
relationships with those learning disabled people is very
important to them.
Case study 4: Roles and contributions
Amongst academics and people with learning disabilities who
collaborate on research projects and who mostly know each
other already, those involved in researching the history of their
self-advocacy group are discussing the different contributions
people have made to the study. Self-advocates had been telling
their stories when, as Catherine describes, our support worker
come to us [with] this beautiful long list of all the things we
forgot to mention and Ian said were vitally important about our
history’. Ian reflected on why they had been missed: ‘the things
he said - our support worker - are more the backdrop. The most
important things are those that people [have] personally been
involved in and things they've achieved’.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 67
It transpires that, Jan, an academic, is doing the project
background work on self-advocacy. She reflects: ‘the
interdependency is very important. It's a team, what comes out
has to be the contribution of different people and I think the
missing bit is why we haven't analysed, why you flourished so
much in the 1990s and why life is much more difficult since
2000/2001. We haven't looked into that and I don't think that
inclusive research will be very good at that.’
The conversation moves on to the need for research to gather
experiences, and to offer interpretations about why those
experiences were like they were, different people’s
interpretations, informed by different research and life
experiences. Ian relates this to the National Survey experience,
‘I sat with you and Karen and the entire purpose was not to
dispute what Eric said as an academic, but in front of each
chapter [we added] some paragraphs, and those paragraphs
are we recognise this in our experience from our own research
or we are a bit surprised by this”.’
Case study 5: Accessibility
The focus group combining self-advocacy groups who also do
research are concerned with the subject of accessibility and
Julie, a main supporter introduces stories of barriers to their
involvement in research: ‘The office for disability had some
money for disability groups but the form on their website were
really complicated, and we did email them and asked for an
easyread copy, but we still haven't got it, they acknowledged it,
but The money they've got is supposed to be used with
groups, and they did not adapt their papers at all. We were
reading it and looking up the words on the internet because
some of the language was really difficult. Self-advocates, Carl
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 68
and Becca chip in about the font size and the conversation
shifts to their experiences of using dance and drama to
communicate to audiences, the problem of jargon and not
assuming that everyone speaks or understands English.
Durbali adds in how at Change they use a lot of pictures in their
reports.
Becca anticipates that the focus group of policy-makers and
funders will ‘be full of jargon’. The group suggest they won’t
know easyread, but they will be interested in budgets and what
the research is about. They agree that making the research
accessible means it costs more. Mel explains that ‘we will ask
these people [funders] what is important to them as well’ and
Becca responds, ‘that will be really different’. Later they talk
more about their use of accessible media and Michael proudly
recounts, We made this video about what we do, then I
uploaded to YouTube, so if someone goes to our website they
can see it on YouTube. Later, he takes up the invitation to
make videos for this project website too.
Case study 6: Co-analysis
The group of self-advocates, academics and supporters have
worked together over many years and several research
projects. They are comfortable with doing data analysis
together as a collaborative process. Lou explains one of the
lessons they learned: I remember on one of our projects we
transcribed tapes and I helped with that and we realised that
rather than doing the transcription, [if] we actually just sat down
and actually listened to the tape interview rather than to
transcribe it all, just listen to the tape and that worked a lot
better. It's actually finding ways that suit everybody.’ On
another occasion she expands on this: some people in our
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 69
research group can't read so what's the use of transcript in
word form when you could just listen to them as tapes. So we
went through the tapes using flipcharts around the room and
people would pick themes that came up. It was not one of those,
like right we've analysed it that's it, we kept adding to it. So we
did copies of tapes for people so they could bring home and
listen to it at their leisure.
The focus group are immediately interested, and someone
comments on how the analysis is done is often skipped over in
the research papers. Ian describes the data analysis process
for the National Survey where Eric (the lead academic)
analysed the data first and then Ian sat down with the
researchers with learning disabilities: ‘we went through what
Eric had done and they picked up things they recognised … we
could pull out quotes using one of the tools for qualitative
research. That made them think about the topic because they
were coding the topics not me.’ Members of the group
suggested that while transcription could be boring and just
done to please the funders, the things they did with coloured
pens, and using the idea of different coloured panels of an
umbrella, and trying to put themselves in the shoes of the
person being interviewed, and the person reading the research,
was a good part of the research process.
Case study 8: A conversation with policy-makers/funders
The focus group is small, the people involved with policy and
funding are in senior roles; they are joined by two experienced
people from a research cooperative whose focus group has
already met three times. Melanie asks for their views on the
defining features of inclusive research. Margaret suggests
mutual interest is key ‘subject matter that engages all
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 70
participants’ – plus mutual respect. There is agreement and
Emma takes up the theme: ‘For me there is something there
about having enough shared purposes. Because actually
people might have different things [they want from the research]
and people might have different perspectives but it is about
having enough that is shared … that holds everyone together.
It's about being clear, everybody being clear and honest about
why they are part of it.
They discuss whether there is one way of defining inclusive
research and Lou and Chloe respond that their cooperative
have discussed this at length without coming to an answer.
There is agreement that everyone’s full commitment to the topic
is important. Emma talks about the spectrum of approaches
and terms and reflects, ‘what worries me is if we receive
proposals that are over-claiming or using words almost
because they are designed to be words to appeal for a funder
rather than actually describing the processes’. Tony says he
doesn’t mind where the idea starts from as long as there is high
involvement of disabled people in the development of the idea
into a proposal and project.
They discuss what has driven policies to fund inclusive
research: families wanting research that is credible, the
availability of lottery money, the push from disabled people,
greater valuing of research about people’s lives generally. They
talk about what they look for in funding proposals including a
realistic budget and timetable. Chloe and Lou express interest
in hearing this as their projects cost more and take longer. The
funders reassure them that this is to be expected, as Tony says,
‘being truly inclusive you accept, you want to be inclusive so
you accept that there is going to be a cost’.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 71
Case study 9: Inclusive research and theory
Melanie has posed the question to the participant-researchers
of whether they use theory when they are interpreting data. She
has worried about whether this concept will be accessible to
everyone. This group of academics and people with learning
disabilities who research together are experienced, no-one
expresses discomfort with the word and the academics pick up
the theme. Some have used hypotheses and existing theories
and developed them further within their inclusive projects. In
one project the academic researcher held back any theoretical
material because it was meant to be user-led.
Jan reflects that inclusive research is based on a theory or
hypothesis, ‘which is if you break things down enough then
people who are not accustomed to think about research can
learn about it’. She also identifies a post-modern theory
underlying inclusive research in that ‘we're saying there are
different voices and we don't need to weave them together,
they can stand for different things’.
Catherine suggests, ‘you can work within a theory without
naming it as a theory’. Rohhss recalls reading the work of
Simone Aspis ‘and bringing it back [to the research cooperative]
and then talking about the social model. People know all about
the social model, it is just not expressed the way academics
express it but it still there.’ They discuss how Dan Goodley has
written about this.
Case study 10: Ingredients of inclusive research
The focus group of self-advocates and their supporters enjoy a
relaxed atmosphere, sitting round a table in a familiar informal
venue. The question posed to them is about the ingredients of
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 72
inclusive research, imagining it was cake what would need to
go in. They have visual materials to work with.
Becca begins, labelling one of the ingredients ‘the topic we are
going to research’. Carl picks up on the metaphor: ‘The jam is
going to be us, because we're on the middle of the cake’.
Becca adds ‘background work’. Mel asks if the topic can be any
topic, Becca isn’t sure but Carl is: ‘it must be a relevant topic’,
clarifying relevant ‘to us’. Julie, in support, gives an example of
researching farming in Greenland to help explain Carl’s point.
Not everyone is following the metaphor but Carl and Becca are
enthused adding, ‘plain English’, ‘translators’, ‘supporters’,
‘money’ and ‘accessible buildings’.
Hilra probes further to explore the people dimension, asking
them about who they mean by ‘us’. They are represented by
jam and there are jokes about raspberries and strawberries
before Becca offers, ‘we the researchers’. Julie, interested in
this theme, tries to prompt thinking by asking, ‘What if there
was 10 people from the university as researchers and there
was 1 self-advocate. Would that be inclusive research?’ They
respond no, talk about partners, and that ‘everybody has to be
involved’, with the same numbers. Durbali adds volunteers to
the mix and Carl makes a new ingredient label ‘Researchers,
and the general public’. Mel checks they know the word
‘academic’ and Becca responds, ‘People from university?’ They
confirm they are happy with academic being an ingredient
‘university jam’.
Doing Research Inclusively, Doing Research Well? Nind & Vinha, 2012 73
Later the conversation turns to whether the ingredients of
inclusive research always need to be the same. Becca thinks
yes but Carl disagrees, ‘sometimes you put something else in
your cake’, or ‘you make the same cake and it turns [out]
different’. Michael agrees with Carl that asking the right
questions always has to be in there.
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    Summary of ‘More Researching Together’ This paper is about my job as a research supporter. I was part of a team, with three people with learning difficulties. They had paid jobs as researchers. The project was at a People First organisation, and it was about direct payments.These are the things I tried to do in my job:It is not always easy to do these things. The supporter needs to learn how to step back, and find ways for researchers with learning difficulties to do things for themselves.It is important that people with learning difficulties know how powerful they can be when they are doing research.People First organisations need to decide for themselves about the research they may want to do.Thank you to CHANGE for the use of pictures from their PictureBank.
  • Article
    Accessible summary• People with learning disabilities who do not use speech are often left out of research.• Ways of doing research which do not use words (for example, using photographs) might make it easier for them to join in.• Ethics committees decide if plans for research projects are good enough.• It is important for ethics committees to stop people from being hurt by research. But they also need to know about the positive things that can happen for people with learning disabilities who get involved in research.• This article explains what happened when Martha (not her real name), a woman with learning disabilities who did not use speech, got involved in a research project at the hostel where she lived.• We hope this article will help researchers and ethics committees think about the positive things that can happen when people with learning disabilities get involved in research.SummaryAlthough there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however, tighter regulation of the UK Research Governance Framework and the requirements of the Mental Capacity Act 2005 have increased the complexity of ethical approval processes. In reaching decisions about whether or not to grant approval, ethics committees are obliged to consider the potential harm to research participants and also the potential benefits. This article documents the benefits of involvement for ‘Martha’, who participated in a research project using photographic methods at the hostel where she lived. We hope the article will stimulate debate about ethical approval and the use of creative methodologies in research with people with profound and multiple learning disabilities.
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    To be empowering, the research must be designed with a group of people who have decided to obtain power, and then must be conducted so that the group learns how to do the research as well as decides what research needs to be conducted. (Sample, 1996: 320) This article describes a project in which Bristol Self Advocacy Group members visited similar groups in their area, and carried out group interviews based on their own research questions. Some academic researchers appear to question the genuine research involvement of people with learning difficulties and I attempt to answer some of these views. The group has already published, in their own names, their views about the process of doing research and their findings (Palmer & Turner, 1998; Palmer et al., in press), and have produced a booklet aimed at other self advocacy groups (Finding Out, 1999). However, in view of the importance of such a group expressing their own viewpoint directly, a word of explanation is in order about the authorship of the present article. It arose originally from my attempts to summarise for the Research Group some of the literature mentioned in this paper, which resulted in an ‘alternative paragraph’ article, in which I wrote one point, and one group member responded in the next paragraph. That project is still in progress, but in the meantime, the group members wanted me to write the present article. I include their own words and writings at several points, but this remains essentially my account of what has happened.
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    Accessible summary• People labelled with learning disability are now more involved in research that is about them and their lives.• When research about the lives of people labelled with learning disability gets published in journals the accounts are written by professionals or academics.• Working and writing together is a good idea but we all need to decide on who is in control.• Being in control of language often means being in control.SummaryCollaboration within the research and publishing process provides opportunities for shared learning and increased knowledge production and dissemination. It can also provide opportunities for conflict if the contributors are divided over issues of authority and authorship. While this situation can be managed, the potential for misunderstanding to arise is heightened when the combination of academics/professionals and individuals labelled with learning disability work together. The scenario described here outlines some of the difficulties that can threaten successful collaboration. Possible remedies are suggested.Disclaimerthe six o’clock news this is thi six a clock news thi man said n thi reason a talk wia BBC accent iz coz yi widny wahnt mi ti talk aboot thi trooth wia voice lik wanna yoo scruff. if a toktaboot thi trooth lik wanna yoo scruff yi widny thingk it wuz troo. jist wonna yoo scruff tokn. thirza right way ti spell ana right way ti tok it. this is me tokn yir right way a spellin. this is ma trooth yooz doant no thi trooth yirsellz cawz yi canny talk right. this is the six a clock nyooz. belt up. Tom Leonard (1984)
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    This article summarises a symposium presented at the 1993 BILD conference by researchers based at the Norah Fry Research Centre, University of Bristol. The linking theme of the several contributions to the symposium was the need to involve people with learning difficulties in research. The article argues that a traditional model of research, in which detached observers set the agenda and present the results to their funders and academic colleagues, should not be seen as the only acceptable approach to research. This article advocates involving people with learning difficulties at every stage of the research process. The article then describes several pieces of work, carried out by or with the support of staff at Norah Fry, which illustrate the Centre's attempts to put this principle into practice. It is argued that the end result is better research, which is of more direct benefit to people with learning difficulties.
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    Accessible summary• There is now a statement from the United Nations that sets out rights for disabled people. One of their rights is to participate in their communities.• One way of participating is when people with intellectual disabilities do research on issues that are of concern to them. This is called inclusive research.• No Longer Researching About Us Without Us was a national project to support people with intellectual disabilities and support workers to do inclusive research. It went on for 18 months.• This paper tells about two of the projects that were done by getting people in some services together to talk about what they wanted to do. One of the projects was about a coffee shop and its place in a small town. The second was about how to stop bullying.• We found that doing the projects led some people with intellectual disabilities to become stronger self advocates. We also found that the projects raised important issues about their lives that other people had not thought of and that people began to work together in groups to do their own research and to make change happen.SummaryNo Longer Researching About Us Without Us was an innovative national project which aimed to develop inclusive research with people with intellectual disabilities in the Republic of Ireland. This paper is my personal reflection as co-ordinator of this project on work undertaken by and with people with intellectual disabilities during its 18-month life. Using examples from the project, this paper explores links between the inclusive research aspect of project and the rights of people with intellectual disabilities to participate in their communities. As a result of the project we found that people with intellectual disabilities began to initiate and take action on some issues that were important to them and that this resulted in the development of longer term changes in their role within one service in Ireland.