Ed Hall
University of Dundee
e.c.hall@dundee.ac.uk
Artwork: John Hall, Garvald Edinburgh
Giving voice to people
with disabilities in research
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
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 sociospatial environments
– Ruth Butler and Sophie Bowlby (1997) on visually impaired
people’s experiences of public spaces
• 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
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
• > ‘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
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)
• 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
• 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
• 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
• 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
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
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
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)