Issues for study

This paper explores the nature of participation within a museum education and access research project involving over 150 disabled people. Within participatory research involving disabled people, what might be anticipated as evidence of authentic participation with jointly undertaken analysis and dissemination of data (Richardson, 1997) or a collective analysis of the research problem (Cocks & Cockram, 1995) is very rarely evident in practice. Stack and McDonald (2014) for example explored 21 action research projects involving people with developmental disabilities, mainly from the UK and US. The majority were no, low or low-medium levels of participation, with only 6 projects being on high levels. Three-quarters of these studies had discussed challenges they had faced. Issues included making the research project accessible and engaging for everyone, particularly data organisation and analysis. Nind’s commissioned review (2008), looking at research with people with learning disabilities mainly in the UK, showed how little had been written about the process of data analysis compared to other aspects of participatory research. Even basic participant validation (member checking) was little in evidence. She also identified literature which highlighted the struggles of involving participants with learning disabilities in data analysis or generation of theory. Nind (2011) also recognised that the challenges involved are particularly under-explored and need to be investigated.

Similar findings were evident in a wider systematic review undertaken as part of ARCHES project, funded by Horizon 2020 and which ran from October 2016 (Rix et al, under review). The review included 54 papers. Involvement in data analysis was evident in just under 35% of studies. Of these, nearly all linked to thematic analysis and nearly half related to participant verification. Generally, an academic researcher would undertake a first stage data analysis and the participants would then sort the themes or inversely the participants would undertake an initial thematic sweep and the academic researchers would then undertake a next stage of analysis. Some papers recognised the partial participation evident in their research. A few studies moved beyond traditional research analysis, recognising the evolving nature of the “messy space” (Seale, Nind, Tilley & Chapman, 2015). Seale et al (2005) looked beyond skills and training, to build upon the strengths of participants already have, to explore the boundaries between groups of participants defined by common objects and shared interests. Nind, Chapman, Seale, and Tilley (2016) suggest that in this process two models come into play; Inclusive immersion and dialogic. Such models respond to theories of empowerment and social justice evident in other participatory research involving particular groupings. This requires not just being open to new socially situated ways of understanding, but also ceding control of research into data collection, analysis and distribution (Nicholls 2009). This speaks to the notion of education as a beautiful risk (Biesta, 2015). Participants are not to be moulded but are to be actively engaged and responsible agents within the learning situation, the outcomes of which are inherently uncertain.

This paper will explore the nature of data analysis and dissemination which arises when this beautiful risk is embraced.

Method Echoing Aldridge’s (2016) description of participatory research, our work was designed with the needs of participants in mind, involving ongoing dialogue and consultation, in relationships based on mutuality, understanding and trust, seeking to enhance the participant voice in all aspects of the project. We recognised that vulnerability and risk is not a fixed identity or condition, that transformative outcomes can be in many arenas and that the data can be subject to diverse forms of analysis and interpretation. From October 2016, a Horizon 2020 funded, participatory research project involving over 150 disabled people has been running in four cities (London, Madrid, Vienna and Oviedo), working with educators in six museums to enhance access to heritage for all. These groups met weekly or bi-weekly throughout the project undertaking activities of their own design or in response to requests from various participant partners. This included 5 partners developing a variety of technologies which aimed to enhance access to the space and learning within it. Within the project we were focussing upon data for three distinct purposes. • Evaluation of technologies leading to recommendations to technology partners • Evaluation of activities and sites leading to recommendations to museums • Evaluation of process & method leading to recommendations in EU reports Across the two years of the groups meeting, a whole range of in-museum activities have emerged, including access audits, relationship building, exploring access preferences, trialling access ideas, and advising on and developing tours and multisensory resources. The ideas for these activities been initiated by, and followed up by, regular attenders and the less regular. Within the sessions we established a routine, whereby people would have an experience, reflect upon the experience, share understandings and insights from that experience, summarise those experiences, record them and then share them with other participants for clarification and verification. This emergent ongoing analysis typically happened shortly after an experience had occurred, but it could also take a longer or retrospective view.

Findings In undertaking this data collection, analysis and dissemination, we recognised that immersion and dialogue were at the root of all knowledge development and inextricably linked to participation. It arose within the while of participation (Rix et al, under review), with underlying tensions between power, voice and support. At the heart of this process was a complex interconnection of risk. As researchers, we had to let go of much of our traditional control and expectation of the processes of analysis and dissemination. Analysis and dissemination which is under the control of the participants must be within the while. Consequently, data will be emergent; and so, their analysis must be emergent too. We came to understand the emergence of data as a contextual phenomenon involving dissemination of knowledge and learning, firstly within a project and then beyond. Arriving at the outcomes of the project was essentially a process of analysis and dissemination, the way in which participants are heard. The multiple views and boundaries of participants can be brought together and shared, in an inward process, leading to a point of collective experience. As part of this inward process, ideas spread through the group like a ripple. Ideally, ripples of knowledge subsequently turn outwards beyond the project; however, projects also work within the constraints of institutional cultures and at the mercy of gatekeepers. These tensions between power, support and voice were evident in the outcomes of a project, (in how it represents lives, in its moments of learning and its value to selves) and required us to constantly engage hopefully with risk. Risk around vulnerability, risks around inclusion, risks about process and risks about outcomes. We will present some of these outcomes as part of this paper.

References (400) Aldridge, J., (2016) Participatory research: Working with vulnerable groups in research and practice. Policy Press. Biesta, G. (2013). The beautiful risk of education. London, UK: Paradigm Cocks E. & Cockram J. (1995) The participatory research paradigm and intellectual disability. Mental Handicap Research, 8: 25–37. Nicholls R (2009) Research and indigenous participation: critical reflexive methods. International Journal of Social Research Methodology 12(2): 117–126.
 Nind, M. (2011). “Participatory Data Analysis: A Step Too Far?” Qualitative Research 11 (4): 349– 363. Nind, M., Chapman, R., Seale, J. and Tilley, L. (2016). “The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research.” Journal of Applied Research in Intellectual Disabilities. 29, 542–551 Nind, M., (2008). Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. National Centre for Research Methods NCRM/012 Richardson, M. Involving people in the analysis: Listening, reflecting, discounting nothing (2002) Journal of Learning Disabilities 6 (1), pp. 47-60. Rix, J., Garcia-Carrisoza, H., Seale, J., Sheehy, K. and Hayhoe, S. (Under review) The while of participation: Lessons learned from a systematic review of participatory research – submitted to Disability and Society Seale, J., Nind, M., Tilley, L. & Chapman, R., (2015). Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices, Innovation: The European Journal of Social Science Research, 28:4, 483-497 Stack, E. and McDonald, K.E., (2014). Nothing about us without us: Does action research in Developmental disabilities research measure up? Journal of Policy and practice in Intellectual Disabilities, 11(2), pp.83-91.