000 02358cam a2200265 4500500
005 20250121054022.0
041 _afre
042 _adc
100 1 0 _aHermant, Émilie
_eauthor
700 1 0 _a Solhdju, Katrin
_eauthor
245 0 0 _aThe Dingdingdong bet
260 _c2015.
500 _a80
520 _aThis 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.
690 _apragmatist philosophy
690 _aspeculative narration
690 _ausers’ activism in the field of public health
690 _apeer learning
690 _aexperiential knowledge
690 _aself-empowerment
690 _acoproduction of knowledge
690 _ahuntington’s disease
786 0 _nEcologie & politique | o 51 | 2 | 2015-09-24 | p. 65-79 | 1166-3030
856 4 1 _uhttps://shs.cairn.info/journal-ecologie-et-politique-sciences-cultures-societes-2015-2-page-65?lang=en&redirect-ssocas=7080
999 _c469602
_d469602