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Presentation by Jan Walmsley at first ESRC funded seminar on participatory research hosted by Jane Seale and colleagues at Plymouth University, 10th Jan 2013
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Inclusive Research Past Present - and Future?
Jan WalmsleyVisiting Professor, Open University
UK
Aims
Define Inclusive Research
Past – How and why it started
What it has achieved and what is left to do
Future directions?
Questions
• What is inclusive research?• When did it start and why?• Why do inclusive research?• What has it achieved?• What is left to do?• How might it develop?
Inclusive Research
From the objects of study to the people who frame the questions
Defined as:A term which embraces participatory and
emancipatory approaches to researchWalmsley and Johnson 2003
Inclusive Research
• Owned (but not always started) by people with learning disabilities
• Furthers the interests of disabled people, researchers on the side of people with learning disabilities
• Collaborative, working together• People with learning disabilities exercise control
over process and outcomes• Outputs are accessible• Walmsley and Johnson (2003) op. cit.
Carlisle Research Collaborative Definition
• Person led research is research started and controlled by people who have learning difficulties
• Rejected research is where people with learning difficulties are not part of the research when it is about them... Where they are not completely included they are rejected
• Townson et al 2004 page 73
Why ?
• Getting a voice – life stories, distinctive experiences, identity
• New roles, new skills, new knowledge • Change the image of people with learning disabilities• Try out new ways for staff and professionals to work as
partners with people with learning disabilities• Make services work better – personalisation• Reduce barriers in society - understand what they are,
how to change them• Better information – finding the right words
Traditional / Inclusive Research
Traditional• Researchers decide on the
questions to ask, and the methods
• People with learning disabilities as objects of research
• Research not designed to be used by people with learning disabilities
• Reports not accessible
Inclusive• People with learning
disabilities help decide topic, questions, methods
• People with learning disabilities carry out some research tasks
• People with learning disabilities use the results
• Accessible reports
From Academic Gaze to Speaking for yourself
Edgerton, Cloak of Competence 1967Atkinson and Williams, Know Me As I Am 1990
From thisClass at Leavesden Hospital, Hertfordshire,England. 1960s
To thisGrundtvig Partnership Work Group in Iceland c. 2007
Inclusive ResearchWhere it came from • Self advocacy – finding a
voice• Participatory Action Research
• Normalisation / srv – valued social roles
• Social model of disability -reducing barriers
• Co – production - changing professional practice
Self Advocacy: Finding a Voice
What is the problem? People are known by their label, not as human beings with their own story to tell
Why inclusive research? Working alongside researchers people tell their stories and let others know who they are, what they want
What do we expect to happen? A more positive view of people with learning disabilities, greater confidence
What is success? Looking beyond the label to see the unique human being
Mabel Cooper Life Story
Stories of Cherry Orchard, Heavers Farm, and Waylands
•
Participatory Action ResearchWhat is the problem? People know best what they need, but
need help and resources to work out how to get it
Why inclusive research? Researchers support people to decide what matters to them, and find solutions
What do we expect to happen? Practical solutions.People have more skills so they can take charge of their lives
What is Success? People are better able to sort things for themselves in the future
Annual Health Checks in Oxfordshire
• Sponsored by NHS Trust and self advocacy group (My Life My Choice)
• In Oxfordshire only 26.1% of people had a health check in 2009/10.
• Carried out by MLMC and me• Easy Report, full Report and Launch• MLMC campaign to increase health checks (in
2012 50%)
Money, friends and making ends meet
• Finding out how people manage when they don’t have support from services
• Relying on friends• Managing our money
• Money friends and making ends meet research group (2012) Having Friends: they help you when you are stuck BJLD Vol. 40 No 2 pages 128-133
Social Role ValorisationWhat is the problem? Labelling people leads to them being
viewed as unable to do things
Why inclusive research? Doing research gives people new roles and skills
What do we expect to happen? People will be seen as able to do important things like research, and they will inspire others
What is success? Image of people with learning disabilities changes
Central England People First research own history
• Philip visits Northamptonshire Archives
Young people at Changing Our Lives interview staff and residents of former hospital
The Social Model of DisabilityWhat is the problem? People are disabled by barriers in society
Why do inclusive research? If disabled people are in charge of research, then they can research how to get rid of these barriers
What do we expect to happen? We find solutions which reduce barriers to disabled people finding jobs, getting better health care, education etc.
What is success? Disabled people are included, they get jobs, they get better health care, education etc.
Self Advocacy Where Next?
• Central England People First commissioned Ian Davies (former chair) and me to find out how other self advocacy groups work and report back
• Used results to change the way they work
Clare Inclusive Research Group, IrelandWe have a right to relationships: Using Drama to get the message across
Clare Inclusive Research GroupResearch into the barriers to travel in rural Ireland, using drama to present findings
Co-productionWhat is the problem? Professionals think they know best and
don’t ask people what they want
Why inclusive research? Partnerships between professionals and disabled people to find out how to make services work better
What do we expect to happen? Professionals learn to work in partnership, services really do meet people’s needs
What is success? People get services which work well for them, they might even be cheaper
Framing the research questions
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsStatistics/DH_4120033
Finding the right words
The terms people use to discuss research is shaped bypast experience. This in turn shapes the role they feelthey can take in research. In our research project onadult protection policy we found the terms risk andabuse in particular are shaped by past experience.
Extracts from accessible summary p. 143
We have found that by NOT asking people their storybut sharing one of our own meant people that came toour research sessions felt able to share what theywanted about their story, in the way they wanted towithout feeling put on the spot..
Brookes I, Archibald S, McInnes K, Cross B Finding the words to work together: developing a research design to explore risk and adult protection in co-produced research BJLD 40 (2) 143-151
Including people with higher support needs
Sue Ledger combined interviews with information from those in the person’s network and ‘mobile interviews’ to enable people with higher support needs and challenging behaviour to contribute to Life Maps like these
The research helps explain why some people did not get placed out of borough. It can be used to reduce out of borough placements and to develop personalised services with people who have high support needs
What is left to do
• Only a few people get the chance to do research• People with higher support needs often left out• We rely too much on ‘easy read’ • We have not told the world about its ’added value’ • People with learning disabilities need knowledge and
skills, as well as life experience to do research• Research might change, but does life really get better?
What of the Future?
• Build on successes – BJLD, JARID, right language, nature of support relationships
• Sharing leadership, team approach, organisational relationships
• Transfer what we have learnt to practice• Help people to ask questions for others to research• Acknowledge that staff, families, professionals and
researchers have contributions to make to understanding the past and forging a better future
A different way to think about inclusive research?
What is the problem Bridge the gap between what people want to be doing, and what they are rejected from doing by the way things are
Why inclusive research? A chance to try out doing things differently
What do we expect to happen? Transfer what we learn through research into practice, better services, better lives
Success ? People get to do what they want to be doing
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