No researching about us without us Symposium on World Report on Disability, University

1. No researching about us without us Symposium on World Report on Disability, University of Sydney, 5-6 December, 2011 Patricia O’Brien1, Edurne Garcia Iriarte2, Marie Knox1, Roy Mc Conkey3, Darren Chadwickl4, Minerva Rivas1. 1 Centre for Disabilities Studies, University of Sydney 2 National Institute for Intellectual Disability, Trinity College Dublin 3 University of Ulster 4 University of Wolverhampton, England Members of the inclusive research networksCDS

2. Recommendation 8. Collect better information about disability.

3. Recommendation 9. Get better at research into disability.

4. 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

5. 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

6. No researching about us without us 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. Charlton, 1998 Collective action

7. What is inclusive research? People with the lived experience of disability • Own the research question • Have a vested interest in the outcomes • Participate in one or all aspects of the research process

8. The Inclusive Research Network

9. Role playing facilitating group discussion • Workshop One • Listening skills • Questioning skills • Working with groups of people • Looking for a question to research

10. 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

11. 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

12. Workshop Two • Different ways to research • Life stories • Action research • Photo voice • Surveys • Interviews • Focus groups • e stories • ‘Ethics’ – what is this all about?

13. Lining up the research process • Workshop Three • What I have learnt so far • Sharing research experiences to date • Making a research proposal • Celebration

14. Our research questions

15. 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

17. 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

18. Common characteristics

19. Approaches & Outcomes • All We Want to Say • 16 focus groups; 97 participants • Facilitated by a co-researcher with disability and a university co-researcher

21. Dissemination • Video: 3 groups • Collage: 1 group • Drama: 1 group • Power Point: 2 groups

22. Work with Committees Examples of Goals

23. Where we live survey: 43 participants Co-researchers’ handbook Supporters’ handbook

24. More than half did not choose who they lived with

25. “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

26. 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.

27. 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.

28. Thank you for listening No research about us without us

29. References Trinity references can be downloaded on www.tcdc.ie/niid/research Charlton, James I (1998). Nothing about us without us Berkeley & Los Angeles, California: University of California Press Inclusive 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.

30. 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