1. Participatory Research Methods: Doing research inclusively Melanie Nind M.A.Nind@soton.ac.uk Quest seminar 9 October 2013

2. A methodological story Beginning Complexity/ My position at the start/ Language Study aims/ Methodological intentions Middle Crisis moments/ Epiphanies/ Findings End My revised position 2

3. Complexity Research about participatory methods using a participatory approach Relationship between the 2 And the tensions 3

4. Starting position “I am known as a researcher who has conducted research both on and with people with learning disabilities, interested in participatory research but not exclusively allied to it.” “I find the moral case for inclusive research with people with learning disabilities compelling. I maintain that while research can be valid and emancipatory without always being inclusive, more work is needed to find what is possible and important for fully exploiting the potential of inclusive research.” (Case for support) 4

5. Language 5

6. Inclusive research: a definition Walmsley & Johnson (2003: 16): ‘must address issues which really matter … and which ultimately leads to improved lives’ ‘must access and represent their views and experiences’ & reflect ‘that people with learning disabilities need to be treated with respect by the research community’ 6

7. Walmsley & Johnson (2003: 12) reflect, ‘we are troubled by a certain stifling of debate about the real difficulties of including people with learning disabilities in research. We believe it is time to challenge certain orthodoxies and assumptions in order to clarify what inclusive research is and how and where it can be applied’ Study = response to the ‘failure to grapple honestly’ (Walmsley & Johnson 2003: 16) with the most sensitive questions, which is needed if the investment in inclusive research is to be a wise investment 7

8. 8 Research aims To build knowledge and capacity in inclusive research with people with learning disabilities. 1.Take stock of the knowledge base; 2.Produce guidance on the issues and challenges; 3.Develop materials and case studies; 4.Produce criteria for quality in inclusive research.

9. Research questions 1.What does working in partnership really mean? 2.What kinds of knowledge are attributable to IR? 3.How can outcomes of IR be assessed and authenticated? 4.What are the benefits & problems? 5.How might good science and good inclusive research practice come together? 6.What can be added from sharing & interrogating practice? 9

10. Methodological intentions (i)create vibrant interactive spaces in which best use could be made of constructive friction within the field - transformative dialogue (Gergen 2009) in a stifled arena (ii)reframe the debate so that the research process (rather than who is the expert) is central (iii) involve participant-researchers ‘not only in the task of unveiling that reality [of inclusive research], and thereby coming to know it critically, but in the task of re-creating that knowledge’ (Freire 1970: 51). (iv)co-construct knowledge in a design not unsympathetic to the focus on inclusive research 10

11. In practice Series of focus groups in dialogic relationship People traditionally with and without power ‘naming the world’ (Freire 1970: 69) together and not ‘on behalf of another’ (70). 11 FG1 FG2 FG3

12. 12 pwld leading research pwld & academics in collaboration academics leading policy makers & funders plenary Focus groups:

13. Participatory methods Talk Visual metaphor Visual recaps I-poems 13

14. Crisis brews 1 person asks if people without learning disabilities are allowed to speak jargon in the ethics form is criticised 1 person attacks language of digital story –word is child-like 1 person opts not to complete consent and take part Davey’s answer is corrected grenade is thrown! 14

15. The grenade is thrown “Before we do wrap up, I might discuss a question with you Melanie, I just want to know why you decided to do an inclusive research project and not being inclusive, because I don't get it.” “to me this is again people are subjects” Fieldnote: Helen reminds me this is useful. It is a position in the room that I can use to trigger responses etc. When I feel less bruised I will reflect more on this!! 15

16. Epiphany Transition from talking about ‘inclusive research’ to ‘doing research inclusively’ Could emphasising the verb rather than naming the approach liberate – unshackle us from the dogma? Could it give us permission for exploration, diversity, development? Participatory/inclusive research is not – and must not be - fixed 16

17. Findings: Diverse ways of working 17 Support Negotiation Interdependency Support Negotiation Interdependency FormalisedImprovised

18. Findings: quality participation – quality research happens when: We answer questions we could not otherwise answer, but that are important We get access in ways we could not otherwise get We make critical use of insider, cultural knowledge The research is authentic (recognisable) We make impact/ a difference to people’s lives 18

19. My position at the end Doing research inclusively Is hard (emotional labour greater + ask too much of it) Needs to go beyond claims making Is not necessarily better Retains an allure But requires critique and integrity 19

20. Further info www.doingresearchinclusively.org Nind, M. & Vinha, M. Doing research inclusively: Bridges to multiple possibilities in inclusive research, British Journal of Learning Disabilities, 2012, i1-8. Note: This work was funded by the Economic and Social Research Council grant RES-000-22-4423. I am grateful to the funder and to everyone who was involved in the study 20