The Dingdingdong bet
Hermant, Émilie
The Dingdingdong bet - 2015.
80
This article retraces a number of research activities undertaken by the collective Dingdingdong, an Institute for the coproduction of knowledge about Huntington’s disease (HD). Dingdingdong came into being as a reaction to the dramatic effects of current medical definitions and cultural images in circulation about Huntington’s disease as the most horrible, most terrifying of all diseases. The article introduces our pluridisciplinary enterprise in which research and political activism are closely intertwined, by stressing its links with William James’ pragmatist philosophy on a number of levels. We attempt to clarify this heritage that is of utmost importance to all our activities by exemplifying its effects or operativness by zooming in on three sites of our ongoing investigations that all share the aim of coproducing new « natural histories » of Huntington’s disease with and for its users. The first case accounts for an ethnographic investigation into the experiential knowledge emerging from the everyday-life of living with and caring for Huntington’s disease, knowledge that all too often remains tacit, silent, unshared. The second case analyses the production process of the danced portrait of a choreic user of Huntington’s disease realized by Anne Collod, as a process of reciprocal instruction. Our third focus lies on a speculative narration that functions as a lure for new possible ways of composing with Huntington’s disease and its particular challenges.
The Dingdingdong bet - 2015.
80
This article retraces a number of research activities undertaken by the collective Dingdingdong, an Institute for the coproduction of knowledge about Huntington’s disease (HD). Dingdingdong came into being as a reaction to the dramatic effects of current medical definitions and cultural images in circulation about Huntington’s disease as the most horrible, most terrifying of all diseases. The article introduces our pluridisciplinary enterprise in which research and political activism are closely intertwined, by stressing its links with William James’ pragmatist philosophy on a number of levels. We attempt to clarify this heritage that is of utmost importance to all our activities by exemplifying its effects or operativness by zooming in on three sites of our ongoing investigations that all share the aim of coproducing new « natural histories » of Huntington’s disease with and for its users. The first case accounts for an ethnographic investigation into the experiential knowledge emerging from the everyday-life of living with and caring for Huntington’s disease, knowledge that all too often remains tacit, silent, unshared. The second case analyses the production process of the danced portrait of a choreic user of Huntington’s disease realized by Anne Collod, as a process of reciprocal instruction. Our third focus lies on a speculative narration that functions as a lure for new possible ways of composing with Huntington’s disease and its particular challenges.
Réseaux sociaux