Participatory politicspeople with learning difficulties leading the way

Melanie Nind (M.A.Nind@soton.ac.uk)Research Methods Festival, July 2010, Oxford

The drive for participation

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A culture change:• From people with learning difficulties as objects of

interest

• … to active social agents

• From professional and medical gaze

• … to giving voice from the inside, ‘liberating silent voices’

• From research to meet their needs

• … to people with learning difficulties as co-researchers, choosing the focus of research about them

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Social model of disability influences• Interface of disability politics and disability studies

• Research is essentially political

• The researcher is either on the side of disabled people or one of the oppressors (Barnes 1996)

• Need to access the perspectives and experiences of oppressed groups lacking the power to make their voices heard through traditional academic discourse

• Self-advocates such as Aspis (2000) want a greater say in research done about them.

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The core message

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‘People who are not in the same boat as us don’t understand what it is like to be us, they have not had our experiences. … Because of this people will want to talk to us. We know what they are talking about and understand them’ (Townson et al. 2004: 73)

People-led research ‘is started and led by us, we are not following someone else, or being partly included, which also means partly rejected, by someone else.’ (Townson et al. 2004: 73)

The ways forward

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2 choices?• Participatory research: actively

involving people with learning difficulties in decision-making and conduct of research OR

• Emancipatory research: research which is under full control of people with learning difficulties and in their interests

NB Kiernan (1999: 45) maintains that ‘the differences between participatory and emancipatory paradigms may be more a matter of emphasis than kind’.

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Or 3?• Walmsley & Johnson (2003) propose term Inclusive

research - allowing for the continuity and reciprocity between the two:

– ‘must address issues which really matter to people with learning disabilities, and which ultimately leads to improved lives for them’,

– ‘must access and represent their views and experiences’, and

– reflect ‘that people with learning disabilities need to be treated with respect by the research community’ (p.16).

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Key questions to ask ourselves

• Is this research on or with people with learning difficulties ?

• Who is this work for?

• What right do we have to undertake it?

• What responsibilities come with it? (Barton 1999)

Leading the way

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Getting started: Designing resarch

Self-advocate led research by Carlisle People First research group -finding out what other people with learning difficulties felt about day centres closing down. Later researching history of People First Groups and currently the role of people with learning disabilities in world war 2

‘This was our own project and our own idea as we felt it was something we needed to do. We thought if we

traced our own history it would encourage other groups to do the same.’ (Townson et al. 2004: 73)

‘We have been rejected by society and should not be rejected from research’ (Townson et al. 2004: 73)

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Getting started: ethicsThe Burton Street Group of researchers used examples of real experiments to talk about ethics, choosing old examples with real obvious ethical dilemmas to make the concepts accessible to the group (Abell et al. 2007)

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Gathering data• Cue Cards: eliciting views with practical, visual

complement to open-ended approaches - symbols for key elements in a narrative - place, people, time, feeling, talk, action, end & consequence. Leading to fuller, more fluently structured, uninterrupted narratives, avoiding rigid, limiting Q-A-R format (Lewis et al. 2008)

• Talking Mats: facilitated conversation approach to supplement interviews - moving graphic images around to make options more concrete - placing images on one or more mats affirms importance. Relies on pre-selected vocabulary/image. Digital photograph record alongside the traditional transcript (Murphy, 1997)

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Analysing data• ‘Self-advocacy should not just be confined

to saying how we feel, what we want to do or what choices we want to make. Our ability to think about and interpret the world which we live in is just as important, if not more so’ (Aspis 2002: 4)

• Example 1: presenting themes for co-researchers to explore & recording ‘the bits they find interesting’ and their reactions to these bits (Williams 1999)

• Example 2: collaborative conceptual exploration and sense-making blurred with collecting data and sharing experience (Nind & Seale, 2009)

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Reporting‘We have written this article in an accessible way. We think that things should be written without jargon and with pictures so that everyone can understand…

Nowadays, lots of people with learning disabilities do research. We think that people with learning disabilities should be able to write up research in a way that is best for them…

The British Journal of Learning Disabilities is the only journal we found that would take accessible articles.’ (Garbutt et al. 2009: 23)

Challenges

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The next stage• Tackling ‘a certain stifling of debate about the real

difficulties of including people with learning disabilities in research … time to challenge certain orthodoxies and assumptions’ (Walmsley & Johnson 2003: 12)

• Understanding what supporters (or non-disabled researchers) do in their sensitive, skilled facilitation

• Working on participant validation, data analysis & theory

• Addressing danger of omission and invisibility of those with the greatest disabilities, excluded as too difficult to include.

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The second phase• Grant & Ramcharan (2007: 12) conclude that

inclusive research has come to the end of an initial phase in which practical knowledge has been gained.

• The ‘second phase’, they argue, ‘is more likely to be concerned with outcomes – what kinds of knowledge are attributable to inclusive research, how knowledge claims of inclusive research can be assessed and authenticated, what the benefits of the experience are to individual service user researchers (individual capital) and to project teams, what forms of partnership make inclusive research effective, and whether good science and good inclusive research practice can be brought together’.

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Grappling with language of research with…• Co-researchers (March et al 1995)

• Supporters (Williams 1999)

• Helpers (Atkinson et al 2000)

• Research partners (Johnson et al 2000)

• Expert informants/inquirers (Knox et al 2000)

• Cooperative research (Van Hove 1999)

• Experts by experience (Grant & Ramcharan 2007)

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Research for people with learning difficulties? Calls for researchers to ‘put

ourselves and our skills at the disposal of people with learning difficulties so that they may take their rightful place in charge of the research agenda’ (Walmsley 2004: 66)

Is this research for people with learning difficulties?

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Dangers…

‘I want to know your story. And then I will tell it back to you in a new way. Tell it back to you in such a way that it has become mine, my own. Re-writing you, I re-write myself anew. I am still author, authority. I am still the colonizer, the speaking subject, and you are now the centre of my talk’

(hooks 1990: 151-2)

Further reading

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• Abell, S. et al (2007) ‘Including Everyone in Research: The Burton Street Group’, British Journal of Learning Disabilities 35: 121-24.

• Garbutt, R. et al. (2010) Accessible article: involving people with learning disabilities in research, British Journal of Learning Disabilities 38(1): 21-34.

• Grant, G. & Ramcharan, P. (2007) Valuing People and Research: The Learning Disability Research Initiative. Overview Report. DoH.

• Johnson, K. (2009) No longer Researching About Us Without Us: A researcher’s reflection on rights and in inclusive research in Ireland, British Journal of Learning Disabilities 37(4): 250-56.

• Learning Disabilities Research Team (2006) Let Me In - I’m a Researcher. DoH

• Nind, M. (2008) Conducting qualitative research with people with learning, communication and other disabilities: Methodological Challenges, NCRM Methods Review Paper, available online at: http://eprints.ncrm.ac.uk/491/

• Townson, L. et al. (2004). We are all in the same boat: doing ‘People-led Research’. British Journal of Learning Disabilities 32: 72-76.

• Walmsley, J. & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley.