The beautiful risk of participation: the development and organisation of four participatory research groups within six cultural-heritage institutions

In the context of cultural heritage, there has been a long-standing misconception that disabled people are a homogeneous group or comprise only those with mobility difficulties or sensory impairment (Sova, 2010). Consequently, within museums issues of access are either often seen as marginal or teaching and learning strategies which are developed for disabled people still favour a deficit model of disability, delivered on the basis of impairment categories. Provision is also put into place with little evaluation of their educational use (Hayhoe, 2017). At the same time, there has been increasing recognition of the potential value of cultural and heritage sites to disabled people as spaces to support the pursuit of educational, social and leisure opportunities (eg: Hooper-Greenhill et al. 2002) and a growing appreciation that disabled people should be involved in assessing heritage site provision (Rayner, 1998; Rix, 2005; Foley, 2012). The end of the twentieth century saw the emergence of a variety of research forms which involved disabled people taking an active role. Swain (1995), for example, identified six approaches that fit within a participatory framework. Similarly, Walmsley and Johnson (2003) recognised Inclusive Research as encapsulating both emancipatory and participatory research in the learning disability context. All of these research approaches align with the principles underpinning emancipatory research, which Barnes (2003) suggested describes research that has a transformative aim, through the promotion of disabled people’s individual and collective empowerment and through barrier removal. Aldridge (2016) proposed that participatory research requires work to be 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. It needs to offer clear opportunities for participation as well as being open about its limitations. It is the contention of this paper that at the heart of all such processes needs to be a willingness to embrace risk. Biesta (2015) talks about how real education always involves a beautiful risk. It involves lighting a fire, where those involved are not objects to be moulded but are active and responsible subjects within the process, where expertise is gained and becomes intuitive through doing. This paper explores how the same engagement with risk needs to be at the heart of participatory research. It explores the differences and difficulties encountered when setting up and working with participatory research groups across the different international partners and research groups, in relation to developing an understanding of participatory research and ways of working, and coming to understand the diverse access preferences of all those involved. Method RFrom October 2016 ARCHES, a Horizon 2020 funded, participatory research project has been running in four cities (London, Madrid, Vienna and Oviedo). It has involved over 150 disabled people working with educators in six museums to enhance access to heritage for all. These groups met either once a week or once a fortnight across the life of the project. In London, these groups ran for thirty months and in the other three cities, they ran for 18 months. From the outset, we had a wider conceptualisation of the participants, beyond the single groups who met in individual cities. We understood participants to include all those who visited or communicated with these groups in any regular manner. In this way, as a minimum, we all had a commitment to a collective relationship, however we also built upon the skills and interests of people as they were revealed within the research process. As Nind (2011), noted, it is appropriate for those involved to adopt a group which builds upon their pre-established resources and motivations. It is this emergent process of revelation which is explored in this paper and serves to unfold the nature of the beautiful risk this method involved. (In an additional paper which is being submitted we will explore the risk which we embraced through our approach to data collection, analysis and dissemination). Expected Outcomes Participation is an experience which emerges while we are doing something, with complex tensions between power, support and voice. To be effective we have to take the opportunities that arise from multiple moments of risk. It begins with an understanding of many of the participants as people who are at risk of marginalisation, who have frequently had a negative experience of key social institutions, such as schools, museums and the workplace. The risk is not to be understood as an in-person deficit but also; it is a collective approach to collaboration. From the outset of a project which seriously seeks to be inclusive and participatory, all the mechanisms and structures have to be thrown open to all participants. Mistakes will be made. Things will go wrong. In seeking solutions, new barriers can too easily be created, but from these new understandings and learning can emerge. References Aldridge, J., 2016.Participatory research: Working with vulnerable groups in research and practice. Policy Press. Barnes, C. 2003. “What difference a decade makes: Reflections on doing ‘emancipatory’ disability research”, Disability and Society, 18 (1): 3-17. Biesta, G. (2013).The beautiful risk of education. London, UK: Paradigm Foley, A. and Ferri, B. A. (2012), “Technology for people, not disabilities: ensuring access and inclusion”, Journal of Research in Special Educational Needs, 12(4): 192-200. Hayhoe, S. (2017). Blind Visitor Experiences at Art Museums. New York: Rowman & Littlefield. Hooper-Greenhill, E.; Dodd, J.; O’Riain, H.; Clarke, A. and Selfridge, L., (2002) “The impact of Dfes Museums and Galleries programme”. Available online (27 May 2015): https://www2.le.ac.uk/ departments/museumstudies/rcmg/projects/learning-through-culture/MGEP%20final%2002%2003% 202005.pdf Nind, M. 2011. “Participatory Data Analysis: A Step Too Far?” Qualitative Research 11 (4): 349– 363. Rayner, A.,(1998) Access in mind: towards the inclusive museum. Edinburgh: Intact (The Intellectual Access Trust). Rix, J., (2005) “Checking the list: can a model of Down syndrome help us to explore the intellectual accessibility of cultural and heritage sites?”, International Journal of Heritage Studies, 11(4): 341-356, 2005. Sova, R.B. (2010). The Importance of Visitor-Focused Educational Programming for Special Needs Access in the Museum. International Journal of the Inclusive Museum, 3(2), 39-48 Swain J. 1995. Constructing participatory research: in principle and in practice. In: Clough P, Barton L, eds. Making Difficulties: Research and the Construction of Special Educational Needs. Paul Chapman, London: 75-93 Walmsley, J. and Johnson, K., 2003. Inclusive research with people with learning difficulties. Past, present and future. London: Jessica Kingsley Publisher