04 SES 08 E, Delving into Inclusion: Research strategies and methodological options
The work presented below forms part of a coordinated project within the National Research Plan which aims to promote processes of innovation and change managed collaboratively by educational and social services and schools in four regions in Spain. In an inclusive research framework, collective-collaborative projects that emerge from the concerns and interests of the participants are designed and developed with different social agents. Specifically, our proposal addresses the research work developed by a group of young people with intellectual disability and researchers from the University of Cantabria (hereinafter referred to as the mixed research team).
This paper focuses on the processes and strategies that underlie the inclusive research work carried out by the mixed team over a period of one and a half years (called the participatory cycle). Through some examples, one in each of the phases that define that cycle, the fundamental processes (listening, sharing, reflecting, discussing and/or collaborating) which shape the different collaborative inquiry activities are examined. Different visual and creative methods and resources have helped support the mixed research team to think together about relevant issues and ‘make the familiar strange’ (Mannay, 2016).
Over the last two decades the number of publications that reflect the increase of inclusive research involving people with intellectual disability has grown in the international context (Goodley & Moore, 2000; Walmsley & Johnson, 2003; Walmsley, 2004a; Nind, 2014; Nind & Vinha, 2012; Strnadová, Walmsley, Johnson & Cumming, 2016). In Spain the situation is very different, where experiences which aim to promote the active participation of people with intellectual disability in research are scarce (Pallisera & Puyalto, 2014; Fullana et al., 2016). Either way, there is an urgent need to address pending challenges and questions in relation to inclusive research. Among others we have identified the following: 1. What ethical dilemmas emerge when researching these characteristics? (Iacono, 2006), 2. What level of involvement and representation do intellectually disabled people have? (Strnadová et al., 2016), 3. What supporting role do academic researchers have? (Walmsley, 2004b; Nind & Vinha, 2012) or 4. What training is valuable for preparing people with intellectual disability to be researchers? (Burke et al., 2003; Salmon, Carey & Hunt, 2014).
In this paper, we echo these questions and gather evidence to illustrate to what extent dialogic processes are a necessary condition for the production of knowledge and the resolution of socially relevant situations for the participants, as well as in the construction and consolidation of the research team (Nind & Vinha, 2012; Nind, 2014).
The work carried out, like initiating a process of change, aims to improve the life of people and construct fairer social contexts, bringing together the set of characteristics that define inclusive research (Walmsley & Johnson, 2003; Nind, 2014). Decisions about the research (subject of research, sampling or information collection strategies) are the result of a collaborative inquiry-reflection-discussion process which recognizes and values the experience of all its members and takes into account the limitations of more traditional research. Like an adhoc process, while it responds to a design of emerging research, it takes shape and is defined according to the extent that people “appropriate” from the research, without this being incompatible with carrying out quality research. The design and development of the project is a significant training environment with respect to ‘the importance of social relationships and loneliness’ and the implications of participatory research.
Innovative networks for social and educational inclusion. Co-laboratory of inclusive participation (EDU2015-68617-C4-4-R) (MINECO/FEDER, UE). Directed by: Teresa Susinos Rada
This research adopts an inclusive approach and can be placed in the qualitative research paradigm, clearly inspired by ethnography (Denzin & Lincoln, 2012). In addition to the characteristics already mentioned, this research can be defined by its use of diverse visual and creative inquiry strategies. This methodological plurality recognizes and is more respectful of personal experiences, allowing a broader and more complex approach to the topics and situations that arise. The research is based on different activities, recognized in social, innovative and alternative research techniques which use images, physical objects, image-theatre, interviews, group discussions and personal cartographies (Margolis & Pauwels, 2011). That is, different visual materials that can be placed on a continuum, which in this work ranges from images found by members of the research team to productions created by them. Likewise, each of the sessions has been systematically documented using field diaries, photographs and audio and video recordings. Therefore, new creative and visual methodologies coexist with ethnographic documentation. The research team consists of nine researchers, seven young people with intellectual disability and two researchers from the University of Cantabria (Spain). The research was developed over a year and a half through twenty seven two-hour sessions. In this work we have identified three phases or stages with different objectives, contents and activities, some of which are described below: Phase 1. Negotiation and tunings of meanings. Objectives: (1) Creating a welcoming and safe research environment; (2) Understanding the nature of a research process. Activity: Thinking about socially unfair situations. Strategies: theatrical tools. Phase 2. Design and Development of the research project. Objectives: (1) Outlining and defining the research topic ‘the importance of social relationships and loneliness’; (2) Understanding and assessing the use of different research tools. Activity: The challenge of constructing questions. Strategies: the analysis of images. Phase 3. Assessment and dissemination of the research with families, professionals and other community groups. Objectives: (1) Sharing the research work and its results in close contexts; (2) Inviting other people to think about socially unfair situations. Activity: Mapping loneliness. Strategy: collage.
The selection and analysis of the inquiry activities highlight the value of dialogic processes and the diversity of languages in recognition of the subjective experience of the Other (Goodley & Moore, 2000) and the shared construction of knowledge. The participation of people with intellectual disability in research requires people to make it their own. For this, it is necessary that co-researchers appropriate the skills, resources and strategies involved in the development of the research and that the academic researchers are able to accompany the research process (Walmsley & Johnson, 2003). The latter requires an on-going review of what is done at each session and a great deal of flexibility in carrying out work which always refers to a continuum of contents, strategies and timing. We believe that it is possible to design training proposals aimed at increasing specific training in research, above all in relation to the creation of groups that will be consolidated in the long term. In this regard, some experiences implemented in the European context with respect to training programmes could be useful (Salmon, Carey & Hunt, 2014; Salmon, García-Iriarte & Burns, 2017). However, when the continuity of research activity is in jeopardy, –we cannot ignore, among other structural barriers (Nind & Viha, 2012), the existing limitations with reference to the merits required to finance research projects- we believe that inclusive research should essentially be a dialogic practice, in which significant and relevant issues for the people who assess them or co-research them are addressed (Nind, 2016). Research should be a space where people are subject to their own transformation (Fielding, 2004) and this is possible if the spaces generate opportunities for negotiating, reflecting, discussing or looking for alternatives designed by and with people with intellectual disability.
Burke, A., McMillan, J., Cummins, L., Thompson, A., Fraser, A., Fraser, m., Fulton, C., McCrindle, E., Gillies, L., LeFort, S., Miller, G., Whitehall, J., Wilson, J., Smith, J. & Wright, D. (2002). Setting up participatory research: a discussion of the initial stages. British Journal of Learning Disabilities, 31, 65-69. Denzin, N. & Lincoln, I. (2012). Manual de investigación cualitativa. Barcelona: Gedisa. Fielding, M. (2004). Transformative Approaches to Student Voice: Theoretical Underpinnings, recalcitrant realities. British Educational Research Journal, 30 (2), 295-311. Fullana, J., Pallisera, M. Vilà, M. & Puyalto, C. (2016). Las personas con discapacidad intelectual como investigadoras. Debates, retos y posibilidades de la investigación inclusiva. Empiria, 33, 111-138. Goodley, D. & Moore, M. (2000). Doing disability research: activist lives and the academy. Disability & Society, 15(6), 861-882. Iacono, T. (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual & Developmental Disability, 31(3), 173-179. Mannay, D. (2016). Visual, narrative and creative research methods. New York: Routledge. Margolis, E. & Pauwels, L. (Eds) (2011). The Sage Handbook of Visual Research Methods. London: Sage. Nind, M. & Vinha, H. (2012). Doing research inclusively, doing research well? ESRC & University of Southampton. [Report] Nind, M. (2014). What is inclusive research? London: Bloomsbury. Nind, M. (2016). Inclusive research as a site for lifelong learning: participation in learning communities. Studies in the education of adults, 48(1), 23-37. Pallisera, M. & Puyalto, C. (2014). La voz de las personas con discapacidad intelectual en la investigación: hacia el desarrollo de investigaciones inclusivas. Revista Nacional e Internacional de Educación Inclusiva, 7(2), 84-97. Salmon, N., Carey, E. & Hunt, A. (2014). Research skills for people with intellectual disabilities. Learning Disability Practice, 17(3), 27-35. Salmon, N., García-Iriarte, E. & Burns, E.Q. (2017). Research Active Programme: A pilot inclusive research curriculum in higher education. International Journal of Research & Method in Education, 40(2), 181-200. Strnadová, I., Walmsley, J., Johnson, K & Cumming, T. (2016). Diverse faces of inclusive research: reflecting on three research studies. Scandinavian Journal of Disability Research, 18(1), 52-64. Walmsley, J. & Johnson, K. (2003). Inclusive research with people with learning disabilities: past, present and future. London: Jessica Kingsley Publishers. Walmsley, J. (2004a). Inclusive learning disability research: the (nondisabled) researcher’s role. British Journal of Learning Disabilities, 32, 65-71. Walmsley, J. (2004b). Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry, 11(1), 54-64.
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