The Ethics of Inclusive Research: Dialogue and Doing Better Melanie Nind, Professor of Education University of Bristol GSoE Ethics Research Day 11 March 2015

1. Defining & situating inclusive research 2. Inclusive research as an ethical response 3. Some conundrums from the field 4. What is it we want research to do for us? 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. (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

Drivers for inclusive research grass roots anger and impetus political moves & global directives e.g. UNCRC, UNCRDP technology/social media/democratisation of knowledge qualitative research concern with voice & perspective emergence of international development, participatory rural appraisal, disability studies, childhood studies need for impact 11

2. Inclusive research as an ethical response 12

The right thing to do! The right thing to: redress wrongs (labelling, pathologizing, colonizing) tackle marginalisation of certain voices engage meaningfully with the people the research is about 13

Innovation & inclusive research Hesse-Biber & Leavy (2008: 12) ‘innovation in the practice of social research is crucial’ ‘for enhancing our understanding of the human condition’. Lincoln (2005: 165-6) an attraction of qualitative research is ‘the promise and democratic and pluralistic ethics of qualitative practices’ with ‘a fresh cadre of methodologists committed to seeing social science used for democratic and liberalizing social purposes’ Denzin (2010) argues addressing social justice should characterise researchers’ innovations & ethical responsibilities. 14

Drivers for innovation in methods: ethics NCRM study – 3 cases: netnography, child-led research, creative methods Innovation should be rooted in genuine attempt to improve some aspect of the research process (not just gimmickry or innovation for innovation sake) Methodological development pushing forward ethical research practice - and institutionalised research ethics practices pushing back methodological developments Ethics as a driver not limiter of innovation 15

Case study 1 Kozinets acutely aware of the potential in online research to mine data from online forums, but argued that it is better research and more respectful of the people within online communities to “participate as a typical blog reader or a member of that community member would”, thereby following “communal rules”. For Kozinets, “participation doesn’t necessarily mean interfering in some way, it means living as a culture member does”. ethical response to a challenge arising from the fact that other, similar approaches do not address the ethical & procedural issues he seeks to solve 16

Case study 2 Gauntlett partly motivated by a desire to avoid research “where you sort of go in, get data, and leave” – concerned with creating a “fair kind of relationship” and an interesting and meaningful experience for participants. Lego levelling the field of research methods – a material everyone can use regardless of professional or other status wanting participants to interpret their own Lego constructions as they were “the expert on their own lives…” 17

Case study 3 Kellett acting responsibly in child-led research - provide more opportunities for CYP to train as researchers while retaining the purity of the ideas, not diluting them. commitment “to working with children in a much more engaged, equal way” (Disc2) and the drive to put children at the centre of research that is innovative, rather than the idea itself”; about getting marginalised groups heard (Int2) “extremely good example of taking children’s voice very seriously” (Exp3). 18

3. Some conundrums from the field 19

Participation v rigour “who gets to count as a credible researcher” child-led research highlights “tension between participation and rigour” (Disc2) who is the real expert? who gets funded? who gets published? what is the quality? 20

Surveillance & protection Kellett covers ethics in the first day of her three-day training for child-researchers and aims at the “same level of ethics as adult research”. Seeing children as un/ethical beings Managing ethics approvals is a role the academy retains Ethics committees usually concerned with protecting children from researchers not reviewing research by children – this turns some of the surveillance-protection discourses and practices on their head. 21

Inclusive research in risky domains Does being ethical mean needing to be inclusive in research? Is being inclusive in research risky? Is being risky in research ethical? Common across the 3 case studies is that they were operating in what are often perceived as ethically risky domains: the internet, children, and visual methods How common/problematic is this for inclusive research? 22

Managing risk Case study innovators were involved in managing (not eliminating) risk Being inclusive as a researcher means making oneself vulnerable and judged in new ways Inclusive research needs to be dangerous enough but not too dangerous! 23

4. What is it we want research to do for us? 24 Some conundrums from the field

Do we want research to … Build our careers? Get our PhDs?! Solve our problems? Improve our lives? Make us feel powerful? 25

Or do we want research to … Serve others interests? Get results for them? Solve our research partners’ problems? Improve their lives? Make them feel powerful? Work for all of us? 26

I want research to work for us, not limit us… I now prefer to talk about ‘doing research inclusively’ rather than doing ‘inclusive research’ as it lessens the gaze of judgment and widens the options of acting ethically and inclusively This can unshackle us from the dogma or maybe just protect us in the battleground It gives permission for exploration, diversity, development & helps with keeping it fluid, unfixed, but still ethical 27

Ethical inclusive research is about Shared and individual goals Dialogue between ways of knowing rather than privileging anyone’s knowledge Grappling with the difficult stuff Setting judgment aside Retaining criticality Not creating researchers in my likeness 28

Vision for a new generation of inclusive research Less preoccupied with our different expertise, more focused on our need to learn from and with each other Valuing diversity of ways in which we might work Tensions between different ways of knowing regarded as valuable in the search for better understandings Recognition that dialogic engagement will lead to collaborative and separate sense-making, with some - but not all - of our purposes shared. 29

Key references Nind, M., Wiles, R.A., Bengry-Howell, A. & Grow, G.P. (2013) Methodological Innovation and Research Ethics: Forces in tension or forces in harmony? Qualitative Research 13(6) 650–667. 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. 30