The Phenomenon of Brain World : Neuroculture in the Making by Patients with Parkinson’s Disease
Keywords:Brain world, neuroculture, patient perspective, Parkinson’s disease
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.
Doidge, Norman (2007): The Brain that Changes Itself. Stories of Personal Triumph from the Frontiers of Brain Science, London: Penguin.
Hagell, Peter (2004): ‘Utmaningar i utvecklingen. Nya behandlingsmetoder av Parkinsons sjukdom’, Susanne Lundin (ed), En ny kropp. Essäer om medicinska visioner och personliga val, Lund: Nordic Academic Press.
Hagen, Niclas (2013): Modern Genes. Body, Rationality, and Ambivalence, Lund: Faculty of Humanities and Theology, Department of Arts and Cultural Sciences, Lund University.
Hansson, Kristofer & Idvall, Markus (eds) (2017): Interpreting the brain in society. Cultural reflections on neuroscientific practices, Lund: Arkiv förlag.
Ideland, Malin (2002): Dagens gennyheter. Hur massmedia berättar om genetik och genteknik, Lund: Nordic Academic Press.
Idvall, Markus (2017a): ‘Synchronizing the Self with Science: How Individuals with Parkinson’s Disease Move along with Clinical Trials’, Ethnologia Scandinavica, vol. 47, 57-77.
Idvall, Markus (2017b): ‘Taking part in clinical trials: The therapeutic ethos of patients and public towards experimental cell transplantations’, Kristofer Hansson & Idvall, Markus (eds), Interpreting the brain in society. Cultural reflections on neuroscientific practices, Lund: Arkiv förlag, 127-151.
Idvall, Markus (2017c): ‘The Concordant Space of Biomedical Science: How Individuals with Parkinson’s Disease Synchronize themselves with Clinical Trials’, Collegium Anthropologicum, 41: 3, 263-266.
Idvall, Markus; Wiszmeg, Andréa & Lundin, Susanne (2013): Focus Group Conversations on Clinical Possibilities and Risks within Parkinson Research: A Swedish Case Study, Lund: Department of Arts and Cultural Sciences, Lund University.
Kleinman, Arthur (1980): Patients and Healers in the Context of Culture, Berkeley: University of California Press.
Liljefors, Max; Lundin, Susanne & Wiszmeg, Andréa (eds) (2012): The Atomized Body. The Cultural Life of Stem Cells, Genes and Neurons, Lund: Nordic Academic Press.
Martin, Emily (1994): Flexible Bodies. The role of immunity in American culture from the days of polio to the age of AIDS, Boston: Beacon Press.
Palfreman, Jon (2015): Brain Storms. The Race to Unlock the Mysteries of Parkinson’s Disease, New York: Scientific American/Farrar, Straus and Giroux.
Pitts-Taylor, Victoria (2016): The Brain’s Body. Neuroscience and Corporeal Politics, Durham & London: Duke University Press. https://doi.org/10.1215/9780822374374
Rose, Nikolas & Abi-Rached, Joelle M. (2013): Neuro. The New Brain Sciences and the Management of the Mind, Princeton & Oxford: Princeton University Press.
Snaprud, Per (2014): ‘Cellerna som reparerar hjärnan’, Forskning & Framsteg, 49: 3, 68-74.
Vidal, Fernando (2009): ‘Brainhood, anthropological figure of modernity’, History of the Human Sciences, 22: 1, 5-36. https://doi.org/10.1177/0952695108099133
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Copyright (c) 2018 Markus Idvall
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