Paper short abstract:

People with profound and multiple learning disabilities form a marginalised minority in the UK, whose lives’ value is often questioned due to their limited physical and cognitive capabilities. My research demonstrates the tensions in the de/construction of personhood perpetuating this phenomenon.

Paper long abstract:

My fieldwork at a special school among children with complex disabilities has explored the tensions surrounding the de/construction of personhood. The value of one’s life rests on being recognised as a person. The Covid-pandemic resulted in a marked increase of do-not-resuscitate (DNR) orders for individuals with learning disabilities.

Counter to the commonly accepted notion of personhood, which emphasises cognitive capacity, communication skills and independent agency, this paper favours a relational view of personhood. Personhood can be experienced as continuously re/constituted in interactions between people as well as between people and environment. This was evident during my fieldwork while experiencing laughter, tears, excitement, resistance, warmth, curiosity as well as boredom among the children and staff. These direct interactions stood in stark contrast to their parents’ accounts of having to document dys/functions of their children’s disabled bodies and minds with the purpose of fitting these into pre-conceived categories, used to validate specific amounts of service hours and financial support. Time and again they lamented the fact that they could not openly acknowledge the joyful aspects of life, so as not to disturb the prominent and expected image of suffering and tragedy associated with disability.

This structural vulnerability is upheld by the web-like bureaucratic systems of education, health and social care providers, leading to a fractured sense of belonging and identity for entire families. Paradoxically, parents have to purposefully break those ‘delicate plates’ that carry their children’s personhoods, in order to secure support to nourish and sustain this essential aspect of life.