The Phenomenon of Brain World : Neuroculture in the Making by Patients with Parkinson’s Disease

Abstract

The aim of this article is to explore how the phenomenon of brain world, as a symptom of a possible emerging neuroculture, is perceived and enacted by patients with Parkinson’s disease, who, in their daily life, are subjected to neuroscience, most often as chronically ill individuals hoping for a cure, but also in some instances as participants in clinical trials. The article is based on a multifaceted ethnographic material that maps the experiences of biomedical research among patients with Parkinson’s. The main body of material consists of interviews carried out in 2012 and 2015, and comprises 19 transcripts of recorded conversations, conducted in groups as well as individually. The article argues that the exposure of the patients to clinical neuroscience gives birth to neuroculture. A materialist-discursive phenomenon called brain world—perceptions and enactments of the brain—is problematized on the basis of how patients cope with and reflect on their chronic illness in everyday life situations and in confrontation with clinical neuroscience. The embodied experience of the illness operates as the route into the brain world and also becomes the ground for how this world is featured with specific properties. Brain world is in this respect a contradictory entity: both plastic and fragile, both accessible and too complex, both strange and known. Most of all, brain world, in the eyes of the patients, relates to a territory still dominated by neuroscientists.