Everybody is somebody: Personhood in the context of disabled children with complex needs

Abstract

This study explores fundamental philosophical questions about the nature of human completeness through its focus on people who challenge conventional definitions of Western personhood: children with learning disability, complex physical and sensory impairment, and additional health needs, which cause them to be dependent on others for their most basic needs. It does so through prolonged ethnographic research, which draws upon interdisciplinary sensory and phenomenological approaches, with children, their parents, and their other carers in a special school in England. By capturing the children’s lived experiences in ways that are often absent from the literature—which tends to portray disabled children with complex needs as passive recipients of care—the study offers a unique perspective on my participants’ subjectivities, examining how interactions between the children, and between children and adults, assist in constituting them as persons in their own right. I explored the children’s lives from different angles and beyond the boundaries of the school where I interacted with them directly. Like other human beings they do not live in isolation, if marginalised. Their lives are enmeshed with those of others as well as situated in society’s normative structures. Within the protective environment of school, they find a space to assert themselves in their own unique ways. In addition, their very existence acts as a disruptor of commonly known ways of thinking and being. They challenge the value of categories, not only those applied to them, but more generally the normative viewpoints that guide everyday life in the UK. Viewed both through phenomenological and Foucauldian lenses, their lives highlight dimensions of lived experiences, which appear subdued in lives of verbal, rationally thinking humans, or are not considered as valid for inclusion in reflections on personhood. These children’s ways of being draws attention to the sensory layers of human existence and its enmeshment with the wider environment. Within this context the notion of a person can be more clearly conceived to be a doing, rather than a being. Personhood, here, is perceived as an activity linked to the embodied intentional reaching out into the world. Highlighting this also emphasises the extent of their marginalisation and barriers to inclusion in UK society.