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

patricia.obrien@sydney.edu.au

http:www.cds.org.au

Phone: CDS: 903 63600