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. 3
How the Research Group Works Inclusive Uses everyones skills Based on people’s interests Accessible Has to be of use to people Must 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 4
Our Guidelines 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 earn a 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! 5
THE RESEARCH CYCLE(Carlisle People First Research Team, 2001, in ‘CommunityLiving’ Magazine) 1.Why is this important? 8. Go over what 2. What is already we did and how Known about this? to improve Are there gaps? 7. Draft and 3.Is there a The Research theory Writing/ accessible Question/ or background Formats - Area of research ideas to Get it out there think about? 6. Analysis. 4. What are the What does the accessible information tell us? 5. Collect the methods? Information/ fieldwork 6
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 stories 8
Analysis Accessible Analysis – ‘what have we found out from what we found out!’ Given Memories Finding Findings in Transcriptions.
Results We didn’t find out what we expected to find out! People’s lives had changed at the same rate as other Cumbrians without Learning Difficulties.www.peoplefirstcumbria.co.uk/resources
ByLou Townson, Elizabeth Harkness and Rohhss Chapman 15
Why the History project was important Andy 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 History Our 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 Workshop Finding good places to meet was a problem Members who had died had made a big contribution to their groups Getting funding was difficult People were often bullied in services There was never enough time to support people 2nd DAY WORKSHOPS Different types of support made a 1. The history of rights, choice difference and struggles in People First There were problems with services 2. The history of support in People were fighting hard for their groups and how it changes rights. 3. The history of funding in groups.
Talking to the groups about ways offinding information Computers and the internet Listening Memory T shirts Diaries / old minutes Newsletters Conferences •Confidentiality Videos/ tapes •Making getting Meeting people information accessible Posters / photos •No jargon! Interviews
Why I did the book... My ambition To be used as a learning resource To 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” 22
Dovenby Hall“Professionals need toknow they’ve destroyedpeople’s lives- the waythey come at you, talkto you, saying thingslike you can’t dothis, you can’t dothat, making decisionsabout us. We need toturn it all around.”Malcolm Eardley, 2009 23
Process of Research Used 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 aperson with a disability.”“Professionals destroyed our lives”“They had all my records about me. I wantedto have them because it was about myselfand what happened to me and all themedical stuff and why they did it tome and why I went into Dovenby.”People with learning difficulties have lots ofskills to offer. 25
Summary...Similarities Importance Raise awareness to the general Getting people’s stories out there- public- getting our research used. our research is all about people Young people learn their history Our Research Cycle and the movement of change We’re fighting against people who Research every stage- rejection have made assumptions issue 26
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. 27
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 Projects Relationships Dovenby Hall More Life Stories A project on networks and people. 29