“Stories are much bigger than ideologies. In that is our hope.” Donna Haraway, The Companion Species Manifesto: Dogs, People, and Significant Otherness, 2003.
Huntington’s disease (HD) is a rare and incurable genetic disorder that provokes cognitive, muscular and psychiatric degeneration, resulting in the progressive loss of autonomy and eventually, death. It is a disease whose advancement cannot be determined in advance and depends entirely on the affected individual.
Since 1993, and following the discovery of the genetic anomaly responsible for HD, a test exists that allows persons for whom one of the parents is affected to determine whether they too carry the disease.
Technically speaking, the procedure couldn’t be more simple: all one needs is a blood test to determine if they have the bad gene. Ethically, psychologically and existentially speaking, it couldn’t be more complicated, because carrying the gene means that one will eventually develop the disease, yet without knowing when – statistics show that it occurs between the ages of 35 and 55 – and how. But what exactly does it signify to diagnose such a catastrophe and then announce it to the affected? Such an event plunges one into a frightening enigma, which largely surpasses the medical procedure that invoked it.
What would happen if the test and the disease were to be considered from the real-life experiences of the carriers and sick persons themselves – who up until now have never had the opportunity to participate in such reflections? Dingdingdong (“Huntington’s” in Huntingtonian language) was created to invite such contemplations with regards to a rare disease like Huntington’s, but also for the sake of more widespread illnesses like Alzheimer’s and Parkinson’s. Our objective is to collectively apprehend an experience via those who are living it, an experience that potentially concerns us all: coping with a genetically diagnosed disorder.
The task of Dingdingdong is to create a system for the production of knowledge based on personal testimonies, with the goal of providing pragmatic solutions so that users – whether they are carriers, patients, family, friends or caregivers – can live honorably their Huntington’s disease. Such an undertaking necessitates a unique collaboration between users, researchers (scientists, philosophers, sociologists, historians etc.) and artists (visual artists, writers, choreographers etc.), so that together they can succeed in their mission: to explore the disease as if it were an unknown planet, and to seek out the proper narrative forms for relating this altogether new adventure.
Project participants: Vincent Bergerat (artist), Liisa Cervières (artist), Anne Collod (choreographer), Alexandra Compain-Tissier (artist), Didier Debaise (philosopher), Vinciane Despret (psychologist and ethologist), Emilie Hache (philosopher), Emilie Hermant (writer), Bruno Latour (philosopher and sociologist), Anne-Laure Morin (jurist) Valérie Pihet (project curator and coordinator), Fabien Siouffi (video game executive and social network), Katrin Solhdju (historian), Stéphanie Soudrain (artist), Isabelle Stengers (philosopher), Fabrizio Terranova (artist), Sophie Toporkoff (art director), Katia Youssov (neurologist).