Applying human rights to children’s participation in research

Profound and multiple learning disabilities (PMLD) is a term used in the UK education system to refer to children with congenital neurological impairments that are said to result in global developmental delay. Traditionally, children with PMLD have been educated in special schools, and research informed by experimental psychology has aimed to develop intervention strategies and assessment tools to push children with PMLD through the so-called preverbal stages of development. There has been growing criticism of the dominance of psychological lenses in the PMLD field to the extent that they construct children’s identities in terms of cognitive and behavioural traits (or lack of). Furthermore, the postpositivist forms of experimental research have been challenged for overlooking the lived experiences of children with PMLD. To address the situation, this chapter aims to develop and examine a phenomenological framework that can guide researchers’ reflection about the lived social experiences of children with PMLD. The chapter explores literature on the experiences of embodiment and relationality, and investigates how a description of the lived experience of intersubjectivity can provide a framework for making sense of, and legitimising those tacit, pre-reflective intuitions about the sociality of children with PMLD. The chapter draws from the work of Maurice Merleau-Ponty (1908-1961) and his proponents to develop this framework, which is “tested” through application to participatory fieldwork research data that the author is currently engaged in. The chapter concludes with a discussion on the strengths and limitations of this approac