People with profound intellectual and multiple disabilities are a marginalised and excluded population, their exclusion from the research arena is one of many underlying causes to their vulnerability within society (Mietola et al., 2017). Within educational research, and indeed research at large, there has been a drive to hear directly from those effected by the research and a recognition of the value of inclusive research strategies. Heralding the cry of ‘Nothing about us without us’ (Charlton, 1998) the inclusive research community has moved from research done on people with learning disabilities to research done for, done with, and even done by people with learning disabilities (Bigby et al., 2014). However as the field of inclusive research advances people with profound intellectual and multiple disabilities have been left behind (de Haas et al., 2022; Mietola et al., 2017), and as moves are made to better define what counts as inclusive research there is a risk that a door will be closed upon them as definitions are given which specify criteria people with profound intellectual and multiple disabilities are unable to meet (Bigby et al., 2014).

This conference paper will provide an introduction to research into identity conducted with people with profound intellectual and multiple disabilities. Within education, as with elsewhere in their lives, people with profound intellectual and multiple disabilities battle against the presence of what Goffman (1970), termed a ‘spoiled master identity’. Depending on how one conceptualises identity the presence of a master identity can mean a person’s core essential identity is not seen, or that a person does not have the opportunity to present, construct or perform their true identity or their other possible identities.

People with profound intellectual and multiple disabilities have been considered too complex to include in research (Kellett & Nind, 2001; Maes et al., 2021), and have been ‘necessarily excluded’ from it (Hill et al., 2016, p. 28), contributing to their marginalised and vulnerable status. By considering identity as embodied, and through the use of creative research methodologies, this work seeks to locate people with profound intellectual and multiple disabilities in the philosophical landscape of identity and state their belonging within research as a whole.

The work considered in this paper takes a creative approach to participant observation informed by sensory ethnography (Pink, 2015), phenomenology (Merleau-Ponty, 1945), and facet methodology (Mason, 2011). Developed in conjunction with research partners with profound intellectual and multiple disabilities, in attendance at two special schools in Cornwall, the work aims at creating research encounters in which people with and without profound intellectual and multiple disabilities explore embodied identity as equals, facilitated through the sharing of novel objects. The equality aspired to is not one of sameness, but rather one of a shifting balance of power, visualised as scales tipping sometimes one way and sometimes the other, but overall with the power shared equally between the two. The work is similarly ambitious with regards to the ‘with’ it aspires to achieve. Taking on the challenge for there to be a ‘radically different approach’ (Klotz, 2004, p. 99), to including people with intellectual disabilities it aims for a ‘with’ that is more than the active participation of people with profound intellectual and multiple disabilities in an aspect of the research process, (e.g. McCormack, 2017; Rushton & Kossyvaki, 2020), and more than a close up observation of another’s life experience (e.g. Leaning & Watson, 2006; Simmons, 2014), reaching instead for a ‘with’ of shared meaning apprehended together through a process of ‘being-with’ one another (Goodwin, 2019; Macpherson et al., 2016; Simmons, 2021). In order to envisage working collaboratively with people with profound intellectual and multiple disabilities it is necessary to conceptualise research as discovery of meaning, rather than acquisition of knowledge. This involves recognising research partners will hold meaning in different ways, e.g. embodied, in thoughts, and acknowledge that the approach will necessarily yield an incomplete form of knowing in light of our inability to perceive another’s mental landscape or live another’s life experiences. In its valuing of insight over totality this approach is aligned with contemporary work within the field of identity (Mendieta, 2003), and moves towards a post-modern understanding of what it means to do research inclusively with people with profound intellectual and multiple disabilities. (The work is currently in development, by the time of the conference it will be underway, consequently the reporting at the conference should be expected to exceed what is stated here as it will be updated in accordance with our understanding at that time.)

This work honours the need for researchers attempting to do research inclusively with people with profound intellectual and multiple disabilities to start from ‘a deep understanding’ (de Haas et al., 2022, p. 159), of those people rather than from a fixed idea of research methodology. In creatively answering the challenge that people with profound intellectual and multiple disabilities are too complex to be included in research, through its deployment of collaboratively developed research methods, this work is an attempt at a post-modern approach to inclusive research design which challenges the hegemony of intellectual ways of knowing. The methods used support the creation of ‘‘meeting points’ which enable a non-verbal conversation to take place’ (Macpherson et al., 2016, p. 371) allowing meaning to be apprehended and shared in non-traditional ways. Through demonstrating the belonging of people with profound intellectual and multiple disabilities within the philosophical landscape of identity, justified not through fairness or fruitfulness (though both of these claims would be warranted) but through the ontological fact of their existence, this work serves as an example of their rightful belonging within research as a whole.

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