Ddd’s poster at WCHD 2013, Rio de Janeiro

Being huntingtonian: about Anouck’s care.

The objective of Dingdingdong – Institute for the Coproduction of Knowledge about Huntington’s Disease (HD) is to create knowledge about HD, taking into consideration the expertise produced by sick persons, carriers at risk, families, as well as by physicians.

Among other things, our Institute conceives portraits of persons affected by HD. These portraits are elaborated from different disciplines such art, social sciences and medicine, as a way to approach the experience of the disease as a multidisciplinary issue.

In this poster, we are presenting the portrait of Anouck, a woman in her late sixties affected by HD still leaving in her apartment in Paris. Around Anouck, we show all the personal and technical attachments composing her care, as a map. Using actor-network theory and cartography methodology, we are revealing the multiple and heterogeneous links which make the materiality of her care.

Keywords: Huntington’s disease ; illness ethnography ; users’ testimonies ; care studies ; pragmatic philosophy ; actor-network theory ; cartography