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Presentation by Carlisle People First research team at first ESRC funded seminar on participatory research hosted by Jane Seale and colleagues at Plymouth University, Jan 10th, 2013
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Today’s outlineIntroduction
Keeping Wartime Memories Alive
The History of People First Groups
The Way of Life
Autism and Advocacy
Summary
Questions 1
Carlisle People First Research Team
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About us...We have been running for
about 15 years
We have 7 members at present
We have written and published a number of articles.
We have talked about our work at Conferences at home and abroad.
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How the Research Group WorksInclusiveUses everyone's skillsBased on people’s interestsAccessibleHas to be of use to peopleMust not reject
“Research methods are anything that help us find out what we are interested in. A lot of researchers have complicated names for different types of research methods. What we want to do is use the methods that are available to us and do not complicate it. When things get complicated it puts people off. Then they feel rejected.” Elizabeth Harkness ‘We Are All in The Same Boat’ 2004
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Our Guidelines
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Our projects should always benefit people with learning difficulties.
We have ownership of our own projects.We are all equal as researchers in the team.People with learning difficulties are to be
employed on our research projects and earna salary.
We will always review our projects and look at good and bad points. We learn from our mistakes.
We will publish our work and get it ‘out there’. This is the only way things will change!
THE RESEARCH CYCLE(Carlisle People First Research Team, 2001, in ‘Community Living’ Magazine)
8. Go over what we did and how
to improve
7. Draft and Writing/ accessible
Formats -Get it out there
6. Analysis. What does the
information tell us? 5. Collect the Information/
fieldwork
4. What are the accessible methods?
3.Is there a theory
or background ideas to
think about?
2. What is already Known about this?
Are there gaps?
1.Why is this important?
The Research Question/
Area of research
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Planning with a PATH
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What have we done so far....History of People First Groups in the UK
Support in UK self advocacy groups
Autism and Advocacy
‘Keeping Wartime Memories Alive’
Direct Payments Research
Peoples life stories8
Keeping Wartime Memories AliveOral History Project
About the project.
Our Methods
Interviews
AnalysisAccessible Analysis – ‘what
have we found out from what we found out!’
Given Memories
Finding Findings in Transcriptions.
ResultsWe didn’t find out what we
expected to find out!
People’s lives had changedat the same rate as other Cumbrians without Learning Difficulties.
www.peoplefirstcumbria.co.uk/resources
The History of People First Groups
By Lou Townson, Elizabeth Harkness and Rohhss Chapman
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Why the History project was importantAndy said “young people
‘don’t have a clue’ about the people who had to live in institutions!”
Its important that we all know the history so we can change things.
It was when the institutions started to close that people first started up the self advocacy movement.
The River of HistoryOur self advocacy group began in September 1990. The group
members talked about their experiences and found out about rights.
We raised money to go to conferences and meet other people
Themes from the History WorkshopFinding good places to meet was a
problemMembers who had died had made
a big contribution to their groupsGetting funding was difficultPeople were often bullied in
servicesThere was never enough time to
support peopleDifferent types of support made a
differenceThere were problems with servicesPeople were fighting hard for their
rights.
2nd DAY WORKSHOPS1. The history of rights, choice
and struggles in People First2. The history of support in
groups and how it changes 3. The history of funding in
groups.
Talking to the groups about ways of finding informationComputers and the internetListeningMemoryT shirtsDiaries / old minutesNewslettersConferencesVideos/ tapesMeeting peoplePosters / photosInterviews
• Confidentiality• Making getting
information accessible• No jargon!
Action Plans
The Way of LifeBy Malcolm Eardley
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Why I did the book...
My ambitionTo be used as a learning resourceTo help people share their stories on what it is
like to have a disability
“There’s no shame in it because you were born with it. It is just a learning disability”
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Dovenby Hall
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“Professionals need to know they’ve destroyed people’s lives- the way they come at you, talk to you, saying things like you can’t do this, you can’t do that, making decisions about us. We need to turn it all around.”
Malcolm Eardley, 2009
Process of ResearchUsed my best research skills
Oral History
Promoted and raised awareness of research
Qualitative – lots of detail
Supported 3 people to write their life stories
Interviewed 9 people with the label of a learning difficulty
Collated my findings in a book yet to be published! 24
What does the book tell us?“Why do people always have to put a label on a person with a disability.”
“Professionals destroyed our lives”
“They had all my records about me. I wanted to have them because it was about myself and what happened to me and all the medical stuff and why they did it to me and why I went into Dovenby.”
People with learning difficulties have lots of skills to offer. 25
Summary...Similarities Importance
Getting people’s stories out there- our research is all about people
Our Research Cycle
We’re fighting against people who have made assumptions
Raise awareness to the general public- getting our research used.
Young people learn their history and the movement of change
Research every stage- rejection issue
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Tensions and Challenges Time- priorities – we all have different jobs and roles!
Distance- we work more than 100 miles from some of our team members.
Keeping it accessible – ‘academic world’ is not always accessible…
Status of our research - Gate Keepers / Our connection to People First in Cumbria, and their history with services.
People don’t listen or dismiss our findings – like at an Autism Awareness conference.
Partnerships? – Real Involvement vs. Tokenism
MONEY! – there’s never enough!!
Being involved in other projects can stop us from getting on with our own projects, which is good and bad.
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Important Things That Could Help...Money, time and patience
Educating and Sharing our experiences- teaching more people about research
Keep on publishing our work
Using our research
New partners
Promote inclusive research full stop! 28
Future ProjectsRelationships
Dovenby Hall
More Life Stories
A project on networks and people.
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Questions....
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