Inclusive research: New challenges Melanie Nind, Professor of Education State level seminar on inclusive research – a catalyst for social change, BNCA, Pune 13 February 2015

1. Defining & situating inclusive research 2. Quality & ethics in inclusive research 3. Achievements & successful challenges 4. Critique & new challenges 2

1. Defining and situating inclusive research 3

Inclusive research participatory research emancipatory research partnership & user-led research child-led peer community decolonizing activist scholarship participatory action research democratic dialogue 4

Democratisation is about ‘net movement toward broader, more equal, more protected, and more mutually binding consultation’ (Tilly 2007, p.59) the capacity to participate in the critical decisions that affect our lives - democratic institutions should be designed to enable our participation. The democratic goods that come with democracy are: inclusiveness, popular control, considered judgement and publicity. (Smith 2009) 5

Changing dynamics and discourse Research that in some way changes the dynamic between research/researchers and the people who have traditionally been the subjects of that research. Discourse changing from research on people who are the objects or subjects of research, to research with those people, and perhaps by or for them. 6

The big questions Who owns this research problem? Who is the initiator of the project? In whose interests is the research? Who has control over the processes and outcomes? How is the power and decision-making negotiated? Who produces the knowledge claims and owns the research? 7

Participatory research involves democratic relationships to produce knowledge which incorporates participants’ everyday knowledge to solve problems (Cancian 1989) research participants in the decision-making and conduct of the research (Bourke 2009) meaningful partnership and meaningful social transformation (Byrne et al 2009) de-privileging academic knowledge & bringing it into dialogue with the knowledge held by ‘experts by experience’ 8

Emancipatory research involves not sharing the control of the research, but control being taken over by those who are implicated in it - controlling the knowledge generated about you activists angry at the way research has traditionally placed a professional gaze on them, with academics seen as studying them for their own benefit and adding to their oppression less changing the rules of the game and more changing to a different game altogether (Oliver 1997) Empowerment/emancipation 9

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’ 10

The drivers for inclusive research: Grass roots grass roots anger and impetus political moves to e.g. user involvement & choice global directives e.g. UNCRC, UNCRDP technology/social media/democratisation of knowledge 11

The drivers for inclusive research: Academic qualitative research concern with voice and perspective, construction of knowledge emergence of international development, participatory rural appraisal, disability studies, childhood studies need for impact 12

2. Quality & ethics in inclusive research 13

The drivers for inclusive research: Ethics Seen as ‘The right thing to do’ (Holland et al, 2008) if we are to: redress wrongs – labelling, pathologizing, colonizing tackle marginalisation of certain voices engage meaningfully with the people the research is about 14

Ideas about quality Employment of advisory or steering groups Search for perfect participatory methods e.g. photo- elicitation, video diaries, choice of methods Working to an imagined gold standard – the principle of involving participants (or representatives from their group) at every stage in the research process Accessible research products 15

The quality controversy Is the research better quality the more inclusive it is? Do quality criteria applied to other research still apply? Are these always in tension? The problem of comparing apples and oranges 16

Seeking evidence about quality Research questions included: 1.What kinds of knowledge are attributable to inclusive research? 2.How can outcomes of inclusive research be assessed and authenticated? 3.How might good science and good inclusive research practice come together? 17

Methodological intentions (i)create vibrant interactive spaces for transformative dialogue 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 18

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). 19 FG1 FG2 FG3

Participatory research methods Talk Visual metaphor I-poems See: Nind (2014) Creative interactions with data: Using visual and metaphorical devices in repeated focus groups, Qualitative Research 20

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 21

3. Achievements & successful challenges 22

Achievements – State of play Know how - re what works in terms of process; we have learned more about inclusive research than through it perhaps Some co-produced design and knowledge (Costs &) benefits understood, plus trade-offs Some training for lay researchers Emergence of problematization Innovative research methods & products 23

4. Critique & new challenges 26

Standpoint epistemology ‘Children ‘create knowledge that we [adults] couldn’t necessarily create. And they can analyse in a way that, we don’t analyse, because … sometimes they see things that we don’t.’ They need to lead research on children because of their unique ‘insider’ perspective which is critical to our understanding of children’s worlds, inaccessible via research led or managed by adults. They have ‘a better understanding of what contemporary childhoods are’ by dint of living them, this leads to a privileging of their perspectives throughout. (Kellett) 27

But Gallacher & Gallagher (2008): ‘The premise here is that identity produces knowledge … people with a certain identity are best placed to produce knowledge about others with a similar identity: children are better placed to know about childhood than adults. … assumes that people are transparently knowable to themselves, and privileges their ‘voices’ as the most authentic source of knowledge about themselves and their lives’, but ‘expert knower’ status is questionable for any of us as is reduction of the kind of knowledge one holds to a single plane of experience. 28

Inlcusive research ‘gives voice’, but ‘voice has frequently been privileged because it has been [wrongly!] assumed that voice can speak the truth of consciousness and experience’ (Mazzei & Jackson, 2009:1) ‘pupil [child or any] voice is neither neutral nor “authentic”, but is produced by/within dominant discourses’ (Thomson and Gunter, 2006: 852) 29

Power is shared/disrupted/given, but Often tinkering at the edges (Cornwall and Jewkes 1995) ‘participatory methods can reproduce rather than challenge unequal power relations’ (Cahill 2007, 299) wrongly viewing power as a ‘commodity to be acquired, exchanged, shared and relinquished at will’ (Gallacher and Gallagher 2008) 30

Innovation, but Kellett (2005) describes her approach as ‘a new paradigm’, training and supporting children & young people to design and conduct research that is led by them from the initial idea through to its dissemination. ‘what I really wanted to do was to see if I could pioneer a way where children can be empowered to do their own research’ (Kellett) Kellett’s methods training for children is very traditional – codification of methods 31

Innovation in what the researcher sets out to do Often in these turns towards the democratization of research innovation in methods is not the point, the point is innovation in what the researcher sets out to do. The purpose is broader than adding to the body of knowledge or even that knowledge having impact. It is to do something new for those involved and affected, if not always to do something new methodologically (but does it add new knowledge?) 32

Re-discovery – experiencing a new dawn Democratization of research happening in disability studies, feminist research, race, childhood, architecture & design Each seem to be inventing it for themselves afresh Every individual researcher seems to do this – product of the lack of a traditional literature review! 33

Stifling of debate Walmsley & Johnson (2003: 12) reflected, ‘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’ ‘failure to grapple honestly’ (p.16) with the most sensitive questions debate is difficult in the battle of the experts 34

Never being good enough The fear of not being inclusive enough is stifling attempts People are getting hurt through trying to be inclusive and being judged failing 35

New spaces Closed/invited spaces or claimed/created spaces (Thomson 2007) ‘democratic spaces of radical inclusivity’ (Torre 2005) Your space, my space, new space (Barod 2014) 36

Core tension (1) Co-researchers need to learn/adopt research conventions to be taken seriously. Thus we can make the collaborators in our participatory research ‘in our likeness’. If this is an innovation, it has to be less innovative or different to be more successful! (It can be a risky business for academics to be associated with…) Academic gatekeeping keeps it in check – if too different it is deemed not to be research at all! 37

Core tension (2) ‘there is a danger that in privileging the personal experience of individuals that new essentialisms will proliferate’ (Frankham, 2009, p. 6). Is it a new hierarch of knowledge or a dialogue between different ways of knowing that we aspire to 38

Core tension (3) Studies can be so grounded in experience that they can fail to go beyond experience into new knowledge … Is there still a place for theory? 39

So, where have I settled (for now)? After an epiphany in the quality study I now prefer to talk about ‘doing research inclusively’ rather than doing ‘inclusive research’ For me using the verb rather than naming the approach is liberating – it can unshackle us from the dogma or maybe just protect us in the battleground? It gives permission for exploration, diversity, development; it helps with keeping it fluid, unfixed 40

Moreover, Doing research inclusively: Is hard (emotional labour greater + we ask too much of it) Needs to go beyond claims making Is not necessarily better Retains an allure But requires problematization – we need to dare to challenge each other in productive ways 41

Vision for a new generation of inclusive research: Not needing to justify an inclusive approach Less preoccupied with our different expertise, more focused on our need to learn from and with each other Shift from judging whether we (ourselves and others) are doing it right to the diversity of ways in which we might work Different ways of knowing valued and the tensions between them seen as valuable in the search for better understandings Recognition that dialogic engagement will lead to sometimes collaborative and sometimes separate sense-making with some - but not all - of our purposes shared. 42

43 Different spaces will be created with room to grow Bridges between our different spaces will become increasingly established Connections will build across fields/domains & benefit from dialogue - complexifying our understandings Energies will shift from process matters re power dynamics and include attention to quality. More attention will be paid to the knowledge generated

Key refs Nind, M. & Vinha, M. (2014) Doing research inclusively: Bridges to multiple possibilities in inclusive research, British Journal of Learning Disabilities, 42(2), Nind, M. (2014) What is Inclusive Research? London: Bloomsbury. Note: Doing Research Inclusively was funded by the ESRC grant RES I am grateful to the funder and to everyone who was involved in the study 44