RGS-IBG Annual International Conference 2014

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50 Co-production and transformation: power, knowledges, activism and social change in disability research (1): Spaces of transformation - co-producing methodologies
Affiliation Geo: Geography and Environment
Geography of Health Research Group
Participatory Geographies Research Group
Convenor(s) Ed Hall (University of Dundee, UK)
Louise Holt (Loughborough University, UK)
Jayne Jeffries (University of Exeter, UK)
Chair(s) Jayne Jeffries (University of Exeter, UK)
Timetable Wednesday 27 August 2014, Session 2 (11:10 - 12:50)
Room Sir Alexander Fleming Building, Room 122
Session abstract In response to calls for more empowering knowledges which reflect people’s lived experiences rather than reproducing medicalised discourses of disability tragedy, critical researchers exploring mind-body differences in space/place and time have an enduring tradition of developing participatory research practices (Kitchin, 2000). These research approaches endeavour to treat participants as equal partners, and prioritise the lived experiences of disabled people. Recently, this endeavour to promote empowering research has witnessed an intensification of the involvement of disabled people, as co-producers of knowledge, involved in many stages of the research, from co-defining agendas and research strategies to analyses and dissemination. This change reflects a broader move towards more participatory research practice in some strands of critical human geography. However, questions are raised, such as: what level of involvement is required for knowledge to be considered to be co-produced and how to avoid tokenism; who controls the research agendas; and, who are legitimate partners in research about mind-body difference and disability?
Linked Sessions Co-production and transformation: power, knowledges, activism and social change in disability research (2): Co-producing everyday knowledges, practices and politics
Compulsory Locality, Co-production and the Commons in Austere Times
Co-producing enabling and empowering research: power, politics and practice (workshop)
Contact the conference organisers to request a change to session or paper details: AC2014@rgs.org
Co-production in peer support group action research
Karen Fisher (University of New South Wales, Australia)
Christiane Purcal (University of New South Wales, Australia)
Sally Robinson (Southern Cross University, Australia)
The paper shares empirical co-production experience from 2013 national research that used peer support groups to explore how disabled people are managing transition to self directed support. The project was a comparative study using a mixed-method co-production approach. Research partnerships with disability community organisations in each Australian state supported the research activity. The research structure included development of guidelines about how to form a peer support group, recruitment of facilitators from the disability community, group training of the facilitators, recruitment of peer support group members by the facilitator, monthly activities in the peer support group, and monthly meetings of facilitators to share their experiences and resources. The findings have implications for peer support as co-production research. The process enhanced the research capacity of the participants, disability community and researchers; and strengthened peer support, advocacy and confidence about self directed support. Peer support action research is commonly used by groups of colleagues to improve their practice or groups of people using a service to develop their capacity to make decisions about their own support. In addition to the direct data from the peer support groups, the process was modified during the project by holding regular collective reflections with the facilitators. This additional level of data collection and analysis enhanced the quality of the co-production, enabling greater control over the design and knowledge generation.
Resist the Silence: The Power of Maker Spaces in AAC Design
Joseph Reddington (Royal Holloway, University of London, UK)
Lizzie Coles-Kemp (Royal Holloway, University of London, UK)
Our work explores control of the research agenda in the context of language development and maintenance. We ask to what extent are those with a range of disabilities, who rely on augmentative and alternative communication (AAC), able to engage with and influence the research agenda in this area? Undertaking any form of user-centered research in this area is difficult (Booth and Booth, 1996) (Nind 2008) (Brewster 2004). AAC research is complicated further by the community’s geographical dispersal and the deep embedding within the family (Reddington 2012, Coles-Kemp and Reddington 2013). The Domesday Dataset (Reddington 2012) captures AAC deployment across the UK and illustrates the complexities of the geographical community dispersal and disparate nature of the technologies that are provided. Nevertheless, this community, and the families that are entwined within it, has a long history of technological experimentation. This tendency has blossomed since 2010’s tablet revolution and arguably the balance of power in AAC design has tipped away from international companies and towards hobbyists, with the family often becoming a type of maker space. We examine examples of AAC user involvement in these maker spaces and evaluate how such activity can affect the opportunities for knowledge co-production on AAC design and language development within the community. We explore how the creation of maker spaces might influence family dynamics and the power relationships between healthcare and support providers and the family. We conclude with an analysis of what researchers can do to support this trend towards AAC technology co-production.
Reflections on using participatory video to co-produce research messages with disabled people in Ghana: potential and limitations
Yaw Adjei-Amoako (University of Reading, UK)
Ruth Evans (University of Reading, UK)
This paper presents reflections on a participatory video (PV) project initiated while conducting doctoral research among disabled people in rural and urban areas in Ghana. From the outset of this research, PV was regarded as an important tool that could potentially offer disabled people greater control over the representation of their lives, provide an opportunity to co-produce knowledge and priorities for action, which in turn could be shared with key stakeholders to help achieve social change and inclusive development. Through a reflexive analysis of the PV process, this paper discusses the role of the first author, a non-disabled researcher in conducting research 'back home' and enabling disabled people to express their views, priorities and concerns. Disabled participants’ views suggest that the PV process led to a number of positive outcomes: it enabled the usual unequal power relations between researcher-researched to be rebalanced to some extent; it was experienced as empowering and enabled individual participants an opportunity for self-reflection; and perhaps, most importantly, it enabled the voices of participants to be heard by development stakeholders, thereby helping to inform future policy and practice. Nevertheless, considerable power remains with the researcher in how such research messages are produced and edited, and how and with whom the co-produced output is shared, discussed and interpreted. We reflect on how the researcher’s positionality influenced the PV process and the potential and limitations of this approach in co-producing research messages and achieving social change.
Mapping the self in public space: Co-producing knowledge of people with intellectual disabilities' everyday use of city space
Ann Fudge Schormans (McMaster University, Canada)
Adrienne Chambon (University of Toronto, Canada)
Robert Wilton (McMaster University, Canada)
Beth Marquis (McMaster University, Canada)
Jessica Carriere (University of Toronto, Canada)
Athena Goodfellow (McMaster University, Canada)
Cicely Arthur (University of Toronto, Canada)
We explore the difficulties and prospects of co-producing knowledge with people with intellectual disabilities emerging from a research project examining their everyday use of urban public space. The research employs a participatory design, using an innovative combination of methods including interviews about experiences of urban public space; participant-led research walks within the city; Geographic Information Systems; and visual and arts-based methods. It has an explicit focus on social change, articulated in the research process (e.g., development of participants’ research skills) and outcomes (e.g., lobbying to improve material conditions and opportunities for participation). We reflect on three points of tension that speak to the complexities of co-production: time, relationships and control. Issues of time include the finite time available for funded research projects and resultant pressures on academic researchers to ‘get work done’, and time pressures co-producers experience (e.g., extra time to hang out with research members, wanting/needing more time to recount experiences and visit places within the city, institutional pressures to be in certain places at certain times to access needed supports). Tensions arise around the nature and duration of relationships among project members: working relationships, acquaintances, or frienships? Notwithstanding efforts to be participatory, relationships often remain ‘unbalanced’ – far more is shared about the everyday lives and personal experiences of co-producers. Questions emerge about control over the research agenda: decision-making around questions asked, research steps and who is involved (e.g., whose use of the city is/isn’t recorded), and dissemination options; sharing or relinquishing control to co-producers; and impacts of perceptions of vulnerability.
“Am I invisible?” Voicing experiences and intervening in policy through co-produced performances with people with learning disabilities
Ed Hall (University of Dundee, UK)
To give voice to the experiences, perspectives and ideas of people with learning disabilities, as part of an ESRC Seminar Series titled ‘Rethinking Learning Disability’ (with Chris Philo, Glasgow; and Murray Simpson, Dundee), a small project was developed in collaboration with ‘Inform Theatre’ (a learning disability theatre group based at Dundee Rep). Building on broad themes emerging from an earlier academic-focused seminar, a series of short theatrical sketches were co-developed through improvisation with the actors and supporters of ‘Inform’, and the academic researcher. The sketches used scenarios to examine issues of importance for the actors, including difference and equality; support, care and independence; and how individual and collective voices can be heard. The sketches were performed at a workshop event for people with learning disabilities, and their supporters; the performances stimulated a series of interactive discussions, which were recorded on wall charts and table cloths, enabled by a specialist facilitator. Importantly, the materials arising from the workshop defined the agenda for the final seminar, with policy-makers and practitioners – at several points in this seminar, actors from Inform Theatre made prepared ‘interventions’ into the discussion, for example on the importance of local places and networks in providing support. This is an instance of genuinely two-way partnership working between academics and people with learning disabilities, which appears to have been significant and empowering for all involved; in particular, providing a powerful and accessible means for people with learning disabilities to ‘speak back’ to academics, policy-makers and practitioners.