Recognising the belonging of people with profound intellectual and multiple disabilities in research through a collaborative exploration of identity

Abstract

This work was designed to establish the belonging of people with profound intellectual and multiple disabilities within research through the undertaking of a collaborative study of identity with four people who have profound intellectual and multiple disabilities. It began with the research question: how can I do research with people with profound intellectual and multiple disabilities? The ‘with’ of this question is foregrounded against a history of research done on and for people with disabilities. Dovetailed with the emerging answering of the first question is the second question of this study: how is identity experienced within our research encounters?
The philosophical foundations of this work are Merleau-Ponty’s Phenomenology of Perception. Building on an enactivist ontology and informed epistemologically by participatory sense-making the study involved participant observation as a methodological approach, informed by sensory ethnography. Fieldwork took place two days per week from February 2023 to October 2023 in a special school in the UK. In addition to ethics clearance, permission given by the school and informed consent given by the parents of the young people who were approached to take part, process assent was continually sought from the young people who were participants in regards to the first question of the study and researchers in relation to the second question.
Data were generated in the form of ethnographic vignettes and reflexive memos. Photographs were also taken. The dataset was thematically analysed through an intuitive, iterative, inductive process and ultimately the themes of: intention, Being With, obstructions and identity were generated.
In relation to question one the researcher, together with the young people involved found a research method they were able to use to meaningfully work together in the exploration of question two. This method is referred to as Being With. People with profound intellectual and multiple disabilities were able to adopt researcher identities, where identity was understood as a sense of who one is in a social location and how one acts. Working together, through the process of Being With, embodied identity was experienced as shared.
This work troubles the narrative that people with profound intellectual and multiple disabilities are too difficult to include in research. The findings around identity ask us to consider ways in which identity may be held in embodied fashion and help to illuminate the experiences of people close to people with profound intellectual and multiple disabilities who often struggle to wrestle their notion of themselves separate from their notion of their loved one. Ultimately the belonging of people with profound intellectual and multiple disabilities within research is argued for based on fact, fairness, and fruitfulness: including them brings us insights we would not gain without them, their exclusion is an epistemic injustice, and as we seek to understand the human experience we cannot do that fully unless all humans are included in the models we create.

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Identifiers

ORCID for Melanie Nind: orcid.org/0000-0003-4070-7513

ORCID for Jo Hope: orcid.org/0000-0002-8939-7045

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