Expanding Possibilities for Inclusive Research: Learning from People with Profound Intellectual and Multiple Disabilities and Decolonising Research
Abstract
:1. Introduction
2. Locating a Space of ‘Being with’
Small Story 1
3. ‘Being with’ as a Space for Feeling
Even though I had not managed to ‘be with’ Senen, the effort of trying left me feeling like I wanted to disconnect rather than connect. The class moved into an activity dedicated to the birthday of a class member. Various articles were passed around, to be looked at, smelled, etc. I took an active role in passing these around, in wafting, moving, putting things against their hands; it is easy to feel like you are doing something without having to move towards the children with your emotional self.(Jo field notes)
I looked at the maths resources and considered trying to get back into a state of being with Becky and couldn’t imagine doing the emotional work to get around these things. … I decided to back off and to perform the teaching assistant role. I counted to 3 and threw a brick into the sandpit every time I reached three. Becky enjoyed this and bounced to show her enthusiasm.(Jo field notes)
I first locate my embodied self, attempting through focus on the here and now to occupy the time and space I find myself within, rather than the many landscapes available to me intellectually. I then seek to locate the other person, I attempt to go deeper than simply looking and listening, I pay attention across sensory systems and attempt to attune myself to their being. To create the potential for being with I lean heavily on Merleau-Ponty’s (1945) descriptions of our experience of consciousness as a directed movement towards the world in which our intention is placed in things towards which we then move. These movements can be physical, they can be utterances, or they can simply be the movement of consciousness. Once I have a rough grasp on where I am and where they are, I try to work out where their intention might lie, I then try to move my intention to that place, and if I can get a match, I experience the sensation of being with them and the potential for a research encounter is created.
Small Story 2
4. Different Ways of ‘Being with’
5. Making Sense of the Direction of Travel
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Antonsich, Marco. 2010. Searching for belonging—An analytical framework. Geography Compass 4: 644–59. [Google Scholar] [CrossRef]
- Atkinson, Petah, Marilyn Baird, and Karen Adams. 2021. Are you really using yarning research? Mapping social and family yarning to strengthen yarning research quality. AlterNative: An International Journal of Indigenous Peoples 17: 191–201. [Google Scholar] [CrossRef]
- Baggini, Julian. 2019. How the World Thinks. Croydon: Granta. [Google Scholar]
- Bamberg, Michael, and Alexandra Georgakopoulou. 2008. A small stories as a new perspective in narrative and identity analysis. Text and Talk—An Interdisciplinary Journal of Language Discourse Communication Studies 28: 377–96. [Google Scholar] [CrossRef]
- Bigby, Christine, and Ilan Wiesel. 2019. Using the concept of encounter to further the social inclusion of people with intellectual disabilities: What has been learned? Research and Practice in Intellectual and Developmental Disabilities 6: 39–51. [Google Scholar] [CrossRef]
- Bigby, Christine, and Patsie Frawley. 2010. Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability 35: 53–61. [Google Scholar]
- Block, Peter. 2018. Community: The Structure of Belonging, 2nd ed. Oakland: Berrett-Koehler. [Google Scholar]
- Bos, Gustaaf, and Tineke Abma. 2022. Putting down verbal and cognitive weaponry: The need for ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities. Disability & Society 37: 1703–27. [Google Scholar]
- Byrne, Amy-Louise, Sandy McLellan, Eileen Willis, Vanessa Curnow, Clare Harvey, Janie Brown, and Desley Hegney. 2021. Yarning as an interview method for non-Indigenous clinicians and health researchers. Qualitative Health Research 31: 1345–57. [Google Scholar] [CrossRef]
- Chalachanová, Anna, Melanie Nind, May Østby, Andrew Power, Liz Tilley, Jan Walmsley, Britt-Evy Westergård, Torill Heia, Alf Magne Gerhardsen, Ole Magnus Oterhals, and et al. 2020. Building relationships in inclusive research in diverse contexts. Scandinavian Journal of Disability Research 22: 147–57. [Google Scholar] [CrossRef]
- Chataika, Tsitsi, and Judy McKenzie. 2013. Considerations of an African childhood disability studies. In Disabled Children’s Childhood Studies. Edited by Tillie Curran and Katherine Runswick-Cole. London: Palgrave Macmillan, pp. 152–63. [Google Scholar] [CrossRef]
- Chilisa, Bagele. 2012. Indigenous Research Methodologies. Los Angeles: Sage. [Google Scholar]
- Chilisa, Bagele. 2017. Decolonising transdisciplinary research approaches: An African perspective for enhancing knowledge integration in sustainability science. Sustainability Science 12: 813–27. [Google Scholar] [CrossRef]
- Chilisa, Bagele, Thenjiwe Major, and Kelne Khudu-Petersen. 2017. Community engagement with an African-based relational paradigm. Qualitative Research 17: 326–39. [Google Scholar] [CrossRef]
- Collis, Anne. 2021. Not the Usual Suspects: Designing a New Method for Public Consultation. Ph.D. thesis, Bangor University, Bangor, UK. [Google Scholar]
- de Haas, Catherine, Joanna Grace, Joanna Hope, and Melanie Nind. 2022. Doing research inclusively: Understanding what it means to do research with and alongside people with profound intellectual disabilities. Social Sciences 11: 159. [Google Scholar] [CrossRef]
- Dewing, Jan. 2007. Participatory research. Dementia 6: 11–25. [Google Scholar] [CrossRef]
- Forster, Sheridan. 2020. Approaching a person with profound intellectual and multiple disabilities: What do you think, what do you do? In Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion. Edited by Melanie Nind and Iva Strnadová. Abingdon: Routledge, pp. 133–58. [Google Scholar]
- Glaser, Barney G., and Anselm L. Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine. [Google Scholar]
- Go, Julian. 2023. Thinking against empire: Anticolonial thought as social theory. British Journal of Sociology. [Google Scholar] [CrossRef] [PubMed]
- Goodwin, Jill, and Ellie Griffiths. 2022. “Being With” in Sensory Theatre. Available online: https://oilycart.org.uk/wp-content/uploads/2022/09/Being-With-in-Sensory-Theatre-DIGITAL-VERSION (accessed on 20 November 2023).
- Goodwin, Martin. 2013. Listening and responding to children with PMLD—Towards a framework and possibilities. The SLD Experience 65: 21–27. [Google Scholar]
- Grace, Joanna. 2022. Share their picture, say their name. Is it safe to share photos of people with profound intellectual and multiple disabilities online? The ethics of being presented to the online world. PMLD Link 34: 35–37. [Google Scholar]
- Greco, Cinzia. 2022. Divergent Ethnography: Conducting Fieldwork as an Autistic Anthropologist. Available online: https://culanth.org/fieldsights/divergent-ethnography-conducting-fieldwork-as-an-autistic-anthropologist (accessed on 20 September 2023).
- Gudjonsson, Elsa E. 2022. The origins of Icelandic Knitting. In Knitting with Icelandic Wool. Edited by Oddny S. Jonsdottir. Reykavik: Forlagid, pp. 9–20. [Google Scholar]
- Hollingsworth, Sandra. 1992. Learning to teach through collaborative conversation: A feminist approach. American Educational Research Journal 29: 373–404. [Google Scholar] [CrossRef]
- Hollingsworth, Steve. 2020. Inhabiting Remote Spaces: An Aesthetic of the Inter-Human. Ph.D. thesis, University of St Andrews, Scotland, UK. [Google Scholar]
- Ifejika, Nkem. 2006. What Does Ubuntu Really Mean? The Guardian. Available online: https://www.theguardian.com/theguardian/2006/sep/29/features11.g2 (accessed on 14 September 2023).
- Kellett, Mary, and Melanie Nind. 2001. Ethics in quasi-experimental research on people with severe learning disabilities: Dilemmas and compromises. British Journal of Learning Disabilities 29: 51–55. [Google Scholar] [CrossRef]
- Kittay, Eva Feder. 2019. Learning From My Daughter: The Value and Care of Disabled Minds. New York: Oxford University Press. [Google Scholar]
- Kreuger, Richard A., and Mary Anne Casey. 2015. Focus Groups: A Practical Guide for Applied Research, 5th ed. London: Sage. [Google Scholar]
- Krueger, Richard A., and Jean A. King. 1998. Involving Community Members in Focus Groups. Focus Group Kit 5. London: Sage. [Google Scholar]
- Lavallée, Lynn F. 2009. Practical application of an indigenous research framework and two qualitative indigenous research methods: Sharing circles and Anishnaabe symbol-based reflection. International Journal of Qualitative Methods 8: 21–40. [Google Scholar] [CrossRef]
- Lesseliers, Joan, Geert van Hove, and Stijn Vandevelde. 2009. Regranting identity to the outgraced—Narratives of persons with learning disabilities: Methodological considerations. Disability & Society 24: 411–23. [Google Scholar]
- Liebert, Rachel. 2021. What could the white body do for decolonising psychology? 31 questions. AWRY: Journal of Critical Psychology 2: 99–123. [Google Scholar]
- Lindemann, Hilde. 2010. Holding one another (well, wrongly, clumsily) in a time of dementia. In Cognitive Disability and its Challenge to Moral Philosophy. Edited by Eva Feder Kittay and Licia Carlson. Hoboken: Wiley-Blackwell, pp. 161–70. [Google Scholar]
- Lindemann, Hilde. 2014. Holding and Letting Go: The Social Practice of Personal Identities. Oxford: Oxford University Press. [Google Scholar]
- Macpherson, Hannah, Alice Fox, Susan Street, John Cull, Tina Jenner, Des Lake, Martyn Lake, and Shirley Hart. 2016. Listening space: Lessons from artists with and without learning disabilities. Environment and Planning D: Society and Space 34: 371–89. [Google Scholar] [CrossRef]
- Manning, Erin. 2016. The Minor Gesture. Durham and London: Duke University Press. [Google Scholar]
- McCormack, Noelle. 2017. Making Memory Sites: Extending Opportunities for People with Profound and Multiple Learning Disabilities to Participate in Life Story Work. Ph.D. thesis, University of East London, London, UK. [Google Scholar]
- McKittrick, Katherine. 2021. Dear Science and Other Stories. London: Duke University Press. [Google Scholar]
- Mencap. 2011. Involve Me: Practical Guide. Available online: https://www.mencap.org.uk/advice-and-support/profound-and-multiple-learning-disabilities-pmld/pmld-involve-me (accessed on 20 September 2023).
- Merleau-Ponty, Maurice. 1945. Phenomenology of Perception. London: Routledge. [Google Scholar]
- Mietola, Reetta, Sonia Miettinen, and Simo Vehmas. 2017. Voiceless subjects? Research ethics and persons with profound intellectual disabilities. International Journal of Social Research Methodology 20: 263–74. [Google Scholar] [CrossRef]
- Mikulak, Magdalena, Sara Ryan, Pam Bebbington, Samantha Bennett, Jenny Carter, Lisa Davidson, Kathy Liddell, Angeli Vaid, and Charlotte Albury. 2022. “Ethno…graphy?!? I can’t even say it”: Co-designing training for ethnographic research for people with learning disabilities and carers. British Journal of Learning Disabilities 50: 52–60. [Google Scholar] [CrossRef]
- Moosavi, Leon. 2023. Turning the decolonial gaze towards ourselves: Decolonising the curriculum and ‘Decolonial Reflexivity’ in Sociology and Social theory. Sociology 57: 137–56. [Google Scholar] [CrossRef]
- Nieuwenhuijse, Appolonia M., Dick L. Willems, and Erik Olsman. 2020. Physicians’ perceptions on quality of life of persons with profound intellectual and multiple disabilities: A qualitative study. Journal of Intellectual and Developmental Disability 45: 176–83. [Google Scholar] [CrossRef]
- Nind, Melanie. 2017. The practical wisdom of inclusive research. Qualitative Research 17: 278–88. [Google Scholar] [CrossRef]
- Nind, Melanie, Alex Kaley, and Edward Hall. 2021. Focus group method: Doing research inclusively and supporting social inclusion. In Handbook of Social Inclusion. Edited by Prannee Liamputtong. Cham: Springer Nature. [Google Scholar]
- Nind, Melanie, and Dave Hewett. 2005. Access to Communication: Developing the Basics of Communication with People with Severe Learning Difficulties through Intensive Interaction, 2nd ed. London: David Fulton. [Google Scholar]
- Nind, Melanie, and Jane Seale. 2009. Concepts of access for people with learning difficulties: Towards a shared understanding. Disability & Society 24: 273–87. [Google Scholar]
- Nyasini, Joseph. 2016. The Ontological Significance of “I” and “We” in African Philosophy. Available online: http://www.galerie-inter.de/kimmerle/frameText8.htm (accessed on 10 July 2023).
- O’Brien, Patricia, Edurne Garcia Iriarte, Roy Mc Conkey, Sarah Butler, and Bruce O’Brien. 2022. Inclusive research and intellectual disabilities: Moving forward on a road less well-travelled. Social Sciences 11: 483. [Google Scholar] [CrossRef]
- Olsman, Erik, Appolonia M. Nieuwenhuijse, and Dick L. Willems. 2021. Witnessing quality of life of persons with profound intellectual and multiple disabilities. A practical-philosophical approach. Health Care Analysis 29: 144–53. [Google Scholar] [CrossRef]
- O’Reilly, Karen. 2012. Ethnographic Methods. London: Routledge. [Google Scholar]
- Patton, Michael Quinn. 2015. Qualitative Research & Evaluation Methods, 4th ed. London: Sage. [Google Scholar]
- Pink, Sarah. 2015. Doing Sensory Ethnography, 2nd ed. London: Sage. [Google Scholar]
- Puigvert, Lidia, Miranda Christou, and John Holford. 2012. Critical communicative methodology: Including vulnerable voices in research through dialogue. Cambridge Journal of Education 42: 513–26. [Google Scholar] [CrossRef]
- Rhee, Jeong-Eun. 2021. Decolonial Feminist Research: Haunting, Rememory, and Mothers. National Centre For Research Methods. Available online: https://www.youtube.com/watch?v=5d-h_-Hrph8&list=PLzv58M2GAfm43IeW5iiDrjNUK3BrXWXC0&index=6 (accessed on 14 September 2023).
- Rieger, Kendra L., Mabel Horton, Sherry Copenace, Marlyn Bennett, Mandy Buss, Anna M. Chudyk, Lillian Cook, Bobbie Hornan, Tara Horrill, Janice Linton, and et al. 2023. Elevating the uses of storytelling methods within indigenous health research: A critical, participatory scoping review. International Journal of Qualitative Methods 22: 16094069231174764. [Google Scholar] [CrossRef]
- Rutazibwa, Olivia U. 2023. After inclusion. Thinking with Julian Go’s ‘Thinking against empire: Anticolonial thought as social theory’. British Journal of Sociology 74: 324–35. [Google Scholar] [CrossRef] [PubMed]
- Simmons, Ben. 2018. The phenomenology of intersubjectivity and research with profoundly disabled children: Developing an experiential framework for analysing lived social experiences. In Seen and Heard: Exploring Participation, Engagement and Voice for Children with Disabilities. Edited by Miriam Twomey and Clare Carroll. Oxford: Peter Lang, pp. 125–44. [Google Scholar]
- Simmons, Ben, and Debbie Watson. 2014. The PMLD Ambiguity—Articulating the Life-Worlds of Children with Profound and Multiple Learning Disabilities. London: Karnac. [Google Scholar]
- Skarsaune, Synne Nese. 2023. Persons with profound and multiple learning disabilities as individuals of knowledge: Exploring the possibilities of empathy. British Journal of Learning Disabilities. [Google Scholar] [CrossRef]
- Skarsaune, Synne Nese, and Halvor Melbye Hanisch. 2023. Holding and professional care: On self-determination for persons with profound intellectual and multiple disabilities. Research and Practice for Persons with Severe Disabilities 48: 25–40. [Google Scholar] [CrossRef]
- Skarsaune, Synne Nese, Halvor Hanisch, and Anita Gjermestad. 2021. Self-determination: What can we learn from persons with profound intellectual and multiple disabilities? Scandinavian Journal of Disability Research 23: 317–27. [Google Scholar] [CrossRef]
- Smith, Linda Tuhawi. 2012. Decolonizing Methodologies: Research and Indigenous Peoples. London: Zed Books. [Google Scholar]
- Smith, Linda Tuhawi. 2021. Resisting Coloniality in Academic Knowledge Production. Webinar 2. National Centre For Research Methods. Available online: https://www.youtube.com/watch?v=EFQ09rPQFyA&list=PLzv58M2GAfm43IeW5iiDrjNUK3BrXWXC0&index=2 (accessed on 14 September 2023).
- Strnadová, Iva, Therese M Cumming, Marie Knox, and Trevor Parmenter. 2014. Building an inclusive research team: The importance of team building and skills training. Journal of Applied Research in Intellectual Disabilities 27: 13–22. [Google Scholar] [CrossRef] [PubMed]
- Tilley, Liz, and Kate Woodthorpe. 2011. Is it the end for anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of 21st century demands on the qualitative researcher. Qualitative Research 11: 197–212. [Google Scholar] [CrossRef]
- Tuffrey-Wijne, Irene, and Gary Butler. 2010. Co-researching with people with learning disabilities: An experience of involvement in qualitative data analysis. Health Expectations 13: 174–84. [Google Scholar] [CrossRef]
- Tuffrey-Wijne, Irene, Jane Bernal, and Sheila Hollins. 2008. Doing research on people with learning disabilities, cancer and dying: Ethics, possibilities and pitfalls. British Journal of Learning Disabilities 36: 185–90. [Google Scholar] [CrossRef]
- Van Goidsenhoven, Leni, and Elisabeth De Schauwer. 2020. Listening beyond words: Swinging together. Scandinavian Journal of Disability Research 22: 330–39. [Google Scholar] [CrossRef]
- Vidal de Milla, Delia. 2000. Arte Textil: Simbolismo de Los Motivos Decorativos [Textile Art: Symbolism of Decorative Motifs]. Cusco: Convenio Munipalidad del Cusco. [Google Scholar]
- Walmsley, Jan, and Kelley Johnson. 2003. Inclusive Research with People with Learning Disabilities: Past, Present and Futures. London: Jessica Kingsley. [Google Scholar]
- Watson, Debbie, David Abbott, and Ruth Townsley. 2006. Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services. Child: Care, Health and Development 33: 90–95. [Google Scholar] [CrossRef] [PubMed]
- Woelders, Susan, Tineke Abma, Tamara Visser, and Karen Schipper. 2015. The power of difference in inclusive research. Disability & Society 30: 528–42. [Google Scholar]
- Yunkaporta, Tyson. 2019. Sand Talk: How Indigenous Thinking Can Save the World. New York: HarperOne. [Google Scholar]
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Grace, J.; Nind, M.; de Haas, C.; Hope, J. Expanding Possibilities for Inclusive Research: Learning from People with Profound Intellectual and Multiple Disabilities and Decolonising Research. Soc. Sci. 2024, 13, 37. https://doi.org/10.3390/socsci13010037
Grace J, Nind M, de Haas C, Hope J. Expanding Possibilities for Inclusive Research: Learning from People with Profound Intellectual and Multiple Disabilities and Decolonising Research. Social Sciences. 2024; 13(1):37. https://doi.org/10.3390/socsci13010037
Chicago/Turabian StyleGrace, Joanna, Melanie Nind, Catherine de Haas, and Joanna Hope. 2024. "Expanding Possibilities for Inclusive Research: Learning from People with Profound Intellectual and Multiple Disabilities and Decolonising Research" Social Sciences 13, no. 1: 37. https://doi.org/10.3390/socsci13010037