Giving voice to people with disabilities in research

1. Giving voice to people with disabilities in research Artwork: John Hall, Garvald Edinburgh Ed Hall University of Dundee e.c.hall@dundee.ac.uk

2. Doing disability research • Troubled history of social research on disability • Colin Barnes (1992) ‘Qualitative research: valuable or irrelevant?’ • Mike Oliver (1992) ‘Changing the social relations of research production’ • James Charlton (1998) ‘Nothing about us without us’ • Research connected to broader oppression of disabled people

3. The (slow) democratisation of disability research • Transformation of understanding of disability from a ‘medical’ to a ‘social’ model, in the 1990s • From research on disabled people… • Examples from social geography: • Jonathan Mayer (1981) on the spatial distribution of multiple sclerosis • Reginald Golledge (1993) on technical solutions to moving around the city for people with visual impairments • To research for disabled people… • Examples: • Brendan Gleeson (1999) on the disabling nature of socio-spatial environments • Ruth Butler and Sophie Bowlby (1997) on visually impaired people’s experiences of public spaces

4. And, more recently, to research with disabled people… • Examples: • Hannah Macpherson (2011) on visually impaired walking groups • Andrew Power and Ruth Bartlett (2014) on welcoming communities for people with learning disabilities • Reflects a further shift in the theorisation of disability… • … From the ‘social’ to an embodied, contextual, contingent and relational model of disability

5. Relations of research • Development of a contextual and relational model of disability • ‘Disability as a product of ongoing dynamic interactions between complex embodied experiences and emotions and specific contexts and sets of relations’ (Hall, 2014) • > ‘Relations’ of research • Characterised by disability movement as exploitative and perpetuating dependency • Emergence of a ‘emancipatory’ or ‘critical’ disability research (in 1990s) to ‘empower disabled people through the transformation of the material and social relations of research production’ (Barnes, 2003) > transformation of people’s lives with researcher as facilitator

6. > ‘Relations’ of research • Co-production of research with and by disabled people • ‘Aims to put principles of empowerment into practice, working with groups and communities offering greater control over the research…’ • ‘Research is enhanced through including experiential expertise which may highlight relevant questions otherwise neglected by ‘experts’’ • ‘Co-production can enhance the effectiveness of research by making it better informed by groups and communities preferences and needs, with communities then contributing to improved outcomes and achievable solutions’ (Durose et al, ) • Disabled people as agents (setting the agenda, doing the research and analysis) and beneficiaries

7. Co-productive research with disabled people: giving people a voice • Example: Power and Bartlett (2013-14) • ‘‘I used to be quiet, now people can’t stop me from talking’: What welcoming communities mean to people with a learning disability living in Southampton & SW Hampshire’ • Collaboration with ‘Choices Advocacy’ • Changes to services – closure of day centres • Photo diaries – places of importance (over one month) • Focus groups to plan the research, explain the methods, reflect on the findings • Informed consent through advocacy • Exhibition and feedback event (October 2013)

9. Another example: Waller and Kroll (2011-13) • ‘Providing access to life stories for adults with communication and language impairment’ • Challenges of communication for many disabled people (365,000 people in the UK could benefit from augmentative and alternative communication) • Existing technology focuses on needs (e.g. ‘I am thirsty’), not social conversation and dialogue • Project worked with adults with severe speech and physical impairments, their support staff, families and friends > formulating, editing and telling their own stories • Training adults with complex disabilities to share narratives

10. Development of software to support adults in sharing their personal narrative experiences • Participation in Dundee Science Festival; presented research findings to over 400 members of the public in a busy shopping centre

11. A final pair of examples… • Hall, Philo and Simpson (2012-13) • ESRC Seminar Series ‘Rethinking Learning Disability’ • Contexts, Voices, Policies • Seminar 2, Voices: Participatory workshop with co-produced sketches by ‘Inform Theatre’ and activities with people with learning disabilities identifying and debating key issues, e.g. benefit cuts, sources of support • Hall and Power (2014-15) • ‘Innovative spaces and networks of care for people with learning disabilities in an era of austerity’ • Participatory project: people with learning disabilities to act as researchers, at all stages of the project, from identifying the questions to dissemination

13. One final pair of examples: • Hall, Philo and Simpson ESRC Seminar Series (2012-13) • Three seminars: contexts, voices, policies • Voices: people with learning disabilities from two organisations in Edinburgh – participatory activities • ‘Inform Theatre’ co-production of sketches on issues of importance, e.g. benefit cuts, being ‘different’ and being ‘the same’ as others • Hall and Power (2014-15) • ‘Innovative spaces and networks of care for people with learning disabilities in an era of austerity’ • Participatory project – working collaboratively with people with learning disabilities from design to dissemination

14. Making co-productive research happen • Deconstructing the research process – building in time at every stage; getting it right from the start • Allow for the research problem to be redefined • Employ a range of methods – what works best? • Disability as contextual > where/when the research is taking place and where/when the disabled people are matters • Disability as relational > importance of advocates, support staff, family, friends etc. • Research as process not simply as outcomes

15. Limitations and challenges • Recognise the ongoing inequality of the research relation • Problem-led research can mean that fundamental and conceptual questions are harder to engage with • What is promised? Again, research as a process, not simply as outcomes • Necessary to think innovatively about methods and dissemination, e.g. role of arts based work • How to ‘represent’ ourselves and others in research • Must avoid complacency – co-production is an ongoing challenge of negotiation

16. Conclusions • ‘Creating spaces for dialogue, negotiation and creativity’ (Chris Creegan, Director, Scottish Consortium for Learning Disability) • Participatory and co-productive research at its best constitutes research ‘about us, with us’ • And, the research process and the relations of research more broadly is challenged and rethought • Voices of disabled people can be increasingly heard • However, ongoing need for reflexive practice on: • Presence • Authenticity • Representation • Relations of research (Durose et al)