No researching about us without us Symposium on World Report on Disability, University
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Transcript of No researching about us without us Symposium on World Report on Disability, University
Patricia O’Brien1, Edurne Garcia Iriarte2, Marie Knox1, Roy Mc Conkey3, Darren Chadwickl4,
Minerva Rivas1.
1 Centre for Disabilities Studies, University of Sydney2 National Institute for Intellectual Disability, Trinity College Dublin3 University of Ulster4 University of Wolverhampton, EnglandMembers of the inclusive research networks CDS
No researching about us without usSymposium on World Report on Disability, University of Sydney, 5-6 December, 2011
RECOMMENDATION 8. COLLECT BETTER INFORMATION ABOUT DISABILITY.
RECOMMENDATION 9. GET BETTER AT RESEARCH INTO DISABILITY.
RESEARCH PRIORITIES OF WORLD REPORT Environmental
factors & interactions Quality of life and
well-being; Barriers to
mainstream and specific services
Accessibility & universal design
Health Poverty and cost of
disability
PROPOSED ACTION Research requires
focused investments in human and technical capacity, particularly in low-income and middle-income countries...linking universities in developing countries with those in high-income and middle-income countries
NO RESEARCHING ABOUT US WITHOUT US
Charlton, 1998 Collective action
This motto is at the core of Inclusive Research which promotes full
participation and equalization of
research opportunities for,
by and with persons with disabilities.
WHAT IS INCLUSIVE RESEARCH?
People with the lived experience of disabilityOwn the research question
Have a vested interest in the outcomes
Participate in one or all aspects of the research process
THE INCLUSIVE RESEARCH NETWORK
ROLE PLAYING FACILITATING GROUP DISCUSSION
Workshop One
Listening skills Questioning skills Working with
groups of people Looking for a
question to research
RESEARCH IDEAS FROM PARTICIPANTS
What is research
Looking up stuff Studying a topic Finding things out Talking to different
people to see how it affects them
Discovering information Helping service to find
ways to make life better for clients
Help with interviewing
WHAT WAS IT LIKE ASKING QUESTIONS Awkward with people I
didn't know I extended the
questions Found it hard with
people I don't know Good – I used the
person's name Asked more questions Enjoyable Good experience Really interesting
WORKSHOP TWO Different ways to
researchLife storiesAction researchPhoto voiceSurveys InterviewsFocus groupse stories
‘Ethics’ – what is this all about?
LINING UP THE RESEARCH PROCESS Workshop Three
What I have learnt so far
Sharing research experiences to date
Making a research proposal
Celebration
OUR RESEARCH QUESTIONS
UNITED NATIONS DECLARATION ON THE RIGHTS OF PERSONS WITH DISABILITIES
Inclusive research network agreed to do a survey on how the lives of people with intellectual disabilities in NSW match the CRPD
Money
Health
JOBS
EDUCATION
HOUSING
Advocacy
THREE MAJOR INCLUSIVE PROJECTS AT TRINITY COLLEGE DUBLIN All we want to say
(NIID, 2009, 2010): commissioned by European Union (EU)
Where we live( IRN, 2009): Initiated by co-researchers with intellectual disabilities
Relationships and support(IRN, 2010): Initiated by co-researchers with intellectual disabilities
COMMON CHARACTERISTICS
Research questions chosen as relevant by
people with intellectual disabilities
People with disabilities and
university researchers team as co-researchers
Training /coaching for co-researchers in
how to collect data, analyze and interpret
Data collection is accessible as well as dissemination
Knowledge of people with intellectual
disabilities continually surprises research
partners.
Dissemination of findings crosses
over into self advocacy.
APPROACHES & OUTCOMES All We Want to Say
16 focus groups; 97 participants
Facilitated by a co-researcher with disability and a university co-researcher
Dissemination •Video: 3 groups •Collage: 1 group •Drama: 1 group•Power Point: 2 groups
WORK WITH COMMITTEESExamples of Goals
Home To organize group discussions to talk about home issues and invite families.
Money To set up a peer support group with people who had already a bank link card and people who wanted a bank link card. They could help each other.
Respect Go to Inclusion Ireland march to Dail on 7th April. Watch the march on TV if you can’t go. Write a paper about the March and give it to the newspaper.
Work Make links with community –be seen and heard.
Advocacy To get better at speaking up for our rights and the rights of others. Bringing any concerns to staff/ managers on a regular basis. Getting the skills to someday be on a interview panel.
WHERE WE LIVE SURVEY: 43 PARTICIPANTS
Co-researchers’ handbook Supporters’ handbook
Step 1: Identify and work with person who will support you Step2 : Find people to interviewStep 3: Get peoples’ consentStep 4: Do the Interview
Step 1: Read information & consent forms
Step 2: Support co-researcher to find people Step 3:Support co-researcher to gain consent Step 4: Support co-researcher to interview
MORE THAN HALF DID NOT CHOOSE WHO THEY LIVED WITH
“We need to do research about where people live because it tells us what people like and don’t like about where they live, and how people can live in a place of their choice.”
Pauline O and Michael F … co-researchers
The results were presented to the National Disability Conference on the 6th October, 2009
RELATIONSHIPS AND SUPPORT STUDY: 16 FOCUS GROUPS , 97 PEOPLE; 20 FACILITATORS FROM IRN
People in the focus groups talked about:
how they used to have a boyfriend or a girlfriend
of getting embarrassed talking about boyfriends and girlfriends
of being treated like children over boyfriends and girlfriends
of not having a boyfriend or girlfriend and wishing they had one
of not wanting a boyfriend or a girlfriend
of their right to get married.
PROPOSED ACTION There needs to be
investment in inclusive research in order that it can play a part in low /middle income countries so that no researching about us without us is not an evolving process but one that is understood as an enabler of making a difference in the lives of people with disabilities.
THANK YOU FOR
LISTENING No researchabout uswithout us
REFERENCES Trinity references can be downloaded on www.tcdc.ie/niid/researchCharlton, James I (1998). Nothing about us without us Berkeley & Los Angeles, California: University of California PressInclusive Research Network (2009) Where we live: A national study done by members of the Inclusive Research Network through surveys. Dublin: National Institute for Intellectual Disability Ireland; Galway: National Federation of Voluntary Bodies ( www.tcd.ie/niid)
Inclusive Research Network (2010) Relationships and Supports Study: People with Intellectual Disabilities in Ireland. Dublin: National Institute for Intellectual Disability Ireland; Galway: National Federation of Voluntary Bodies.. National Institute for Intellectual Disability (2009)All We Want to Say: People with Intellectual Disabilities Presenting Research Findings in Ireland. Dublin: Trinity College Dublin.
National Institute for Intellectual Disability (2010) All we want to say: Life in Ireland for people with intellectual disabilities. Dublin: Trinity College Dublin.
For further information on any of these studies contact:
Professor Patricia O’Brien, CDS
http:www.cds.org.au
Phone: CDS: 903 63600