Participatory methodologies with persons with intellectual disabilities – A theoretical literature review
##plugins.themes.bootstrap3.article.sidebar##
##plugins.themes.bootstrap3.article.main##
Abstract
This theoretical literature review includes the different methodologies identified as participatory with persons with disabilities. The participation of persons with disabilities has been demanded by academics, persons with disabilities and even by legal texts such as the Convention on the Rights of Persons with Disabilities. The objective of this theoretical literature review is to compile the different methodological approaches and to identify barriers, criticisms and new experiences of research with persons with intellectual disabilities. It identifies common principles of participatory methodologies, strategies to overcome difficulties and finds concrete examples of research with positive results in which persons with intellectual disabilities have been involved in a significant way.
##plugins.themes.bootstrap3.article.details##
How to Cite
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
openAccess
Arstein-Kerslake, A., Gooding, P., Mercer, S., Raymond, M. & McSherry, B. (2019). Implementing a Participatory Human Rights-Based Research Methodology: The Unfitness to Plead Project. Journal of Human Rights Practice, 11(3), 589. doi: 10.1093/jhuman/huz034.
Beresford, B., Tozer, R., Rabiee, P., Sloper, P. (2004) .Developing an approach to involving children with autistic spectrum disorder in a social care research project. British Journal of Learning Disabilities, 32,180-85.
Biggs, S. (1989). Resource-poor farmer participation in research: a synthesis of experiences from nine national agricultural research systems. OFCOR Comparative Study Paper 3. International Service for National Agricultural Research. The Hague.
Bigby, C. y Frawley, C. (2010). Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual Developmental Disability, 35(2), 53-61.
Cornwall, A., Jenkes, R. (1995). What is participatory research? Social Science & Medicine, 41(12), 1667-1676.
Danieli, A. y Woodhams, C. (2005). Emancipatory Research Methodology and Disability: A Critique. International Journal of Social Research Methodology, 8(4), 281-296, DOI: 10.1080/1364557042000232853.
Degener, T. (2014). A human rights model of disability. Routledge Handbook of Disability Law and Human Rights.
Durell, S. (2016). “Welcome to the Real World” Inclusive Research with People with Learning Disabilities: A Doctoral Journey. The Qualitative Report 21(12), 2308-2330.
Fals Borda, O. (1998). Future Action: Reflections on the Participatory Research World Congress. International Sociology 13(3), 399–402.
Finkelstein, V. (1980). Attitudes and Disabled People. New York: World Rehabilitation Fund.
Freire, P. (1973). Education for critical consciousness.
Gustavsson, A., Sandvin, J., Traustadóttir, R., Tossebro, J. (2005). Resistance, Reflection and Cnange: Nordic disability Research. Lund, Sweden: Studentlitteratur.
Hohmann, A., Shear, K. (2002). Community-Based Intervention Research: Coping With the “Noise” of Real Life in Study Design. The American Journal of Psychiatry 159, 201-7.
Israel, B., Schulz, A., Parker, E., Becker,A. (1998). “review of community-based research: assessing Partnership approaches to improve Public health.” Annual Review of Public Health 19. 173-202.
Johnson, K., Traustadóttir, R. (2005). Deinstitutionalization and People with Intellectual Disabilities: In and Out of Institutions. Jessica Kingsley Publishers.
Mercer, G. (2002). ‘Emancipatory Disability Research’ in Barnes, C., Oliver, M. and Barton L. (eds) “Disability Studies Today”. Polity.
Mietola,R., Miettinen, S., Vehmas, S. (2017). Voiceless subjects? Research ethics and persons with profound intellectual disabilities. International Journal of Social Research Methodology, 20(3), 263-274.
Milner, P., Kelly, B. (2009). Community participation and inclusion: people with disabilities defining their place. Disability & Society, 24(1), 47–62.
Minkler, M., Wallerstein, N. eds. (2008). Community-Based Participatory Research for Health: From Process to Outcomes (2nd edition). San francisco, CA: Jossey-bass.
Morris, J.(1992). Pride against Prejudice. London: BPCC Hazell Books.
Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap & Society, 7(2), 101-14.
Ollerton, J., Horsfall, D. (2013). Rights to research: utilising the Convention on the Rights of Persons with Disabilities as an inclusive participatory action research tool. Disability & Society 28(5), 616-630, DOI: 10.1080/09687599.2012.717881.
Pallisera Di?az, M., Puyalto? Rovira, C., Fullana Noell, J., Vila? Sun?e? M., Martin Pazos, R. (2015). Una experiencia de investigación inclusiva. Personas con discapacidad intelectual como asesoras en una investigación sobre transición a la edad adulta. Revista Iberoamericana de Educacio?n 69, 2.
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, http://dx.doi.org/10.1080/13511610.2015.1081558
Stone, E., Priestley, M. (1996). Parasites, pawns and partners: disability research and the role of non-disabled researchers. British Journal of Sociology 47 (4), 699-716.
Strnadová, I., Walmsley, J., Johnson, K., Cumming, T.M. (2014). Diverse faces of inclusive research: reflecting on three research studies. Scandinavian Journal of Disability Research, DOI: 10.1080/15017419.2014.964766.
Strnadová, I., & Walmsley, J. (2018). Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities, 31(1). https://doi.org/10.1111/jar.12378
Sweeney, A., Beresford, P. (2019). Who gets to study whom: survivor research and peer review processes. Disability & Society DOI: 10.1080/09687599.2019.1664062.
Tuffrey-Wijne, I., Bernal, J., Hollins, S. (2008). Doing research on people with learning disabilities, cancer & dying: Ethics, possibilities and pitfalls. British Journal of Learning Disabilities, 36, 185–190.
Walmsley, J. (2001). Normalisation, Emancipatory Research and Inclusive Research in Learning Disability. Disability & Society 16 (2): 187–205.
Ward, L., Simons, K. (1998). Practising Partnership: Involving People with Learning Difficulties in Research. British Journal of Learning Disabilities 26, 128-131.
Wolff, J. (2011). Ethics and Public Policy: A Philosophical Inquiry. London: Routledge.
Zarb, G., (1992). On the road to Damascus: First steps towards changing the relations of disability research production. Disability, Handicap and Society 7 (2), 125-138.