Accepted paper:

The 'participatory society': Implications for enactments of personhood in diagnosing dementia

Authors:

Iben Gjødsbøl (University of Copenhagen)
Mette Nordahl Svendsen (University of Copenhagen)

Paper short abstract:

Paper long abstract:

This paper investigates how conceptions of the 'participatory society' may be applied to enactments of 'the person' in the field of dementia. In Western philosophy personhood has often been associated with cognitive abilities such as memory, consciousness and the task of self-making, reflecting a notion of 'person' as an essence and something beings can possess and loose. Consequently the fact of the 'person' may be questioned in the case of dementias. In this paper, we take an alternative position subscribing to the premise that personhood is not a stable and fixed phenomenon but something that is practiced in social arenas. We thus aim to investigate how the person is enacted and allowed to act in the clinical encounter in a memory clinic in Copenhagen, Denmark. Based on ethnographic fieldwork in the memory clinic we look at the complex diagnostic and treatment practices in which relatives are continuously drawn in and required to participate. The clinical conversation is centered around the medical history of the patient, but as most patients in the memory clinic are incapable of creating a meaningful disease narrative on their own, this narrative is formed through the shared collective experience of both patient and relatives. Hence this practice enacts the person as socially constituted through kinship, partnership or friendship. The movement towards a 'participatory society' is said to rearticulate expertise, values and responsibilities. With this paper we wish to extend this debate and discuss how technologies of participation allow specific enactments of what constitutes a person.

panel D1
Technologies of care and participation: Shifting the distribution of expertise and responsibilities