In 2006, I learnt that I am gene positive for HD. Since then, it has been a long journey, bringing me from despair to a totally different way to understand this information/prognostic: from the experience perspective of those who develop it, what if Huntington’s was an enigmatic planet that we, users, are meant to discover?
To achieve this expedition in the Huntingtonland, I created with Valérie Pihet Dingdingdong, a collective whose sole vocation is to create a living and operational way of thinking through Huntington’s. This collective does not intend to collate general information about the disease, or raise funds to treat those affected by it, which existing organisations do a remarkably good job of already. It’s not a federation but a gathering of individuals, artists and researchers (social science), driven by a common, vital concern for creating innovative thinking from their experience with the disease. It is not a collective against anything – against the disease, for instance – but rather for building something that does not as yet exist, above all a specifically Huntingtonian way of thinking whose current lack exacerbates the suffering of those affected by the disease.
I am a writer and writing is the most precious and reliable means at my disposal for hosting the creations to which my Huntingtonian life is now bound. If Huntington’s disease is a world waiting to be discovered, she – Huntington’s is indeed female, as in the French language the words “Land” and “Disease” are feminine – needs her own language, her own mythology, her own founding texts. I need the collective to inform the mode of writing which can speak, describe and bring Huntington’s into existence, thanks to the shared experiences it will provoke and thanks to the Huntingtonian us-jectivity (nousjectivité) it will reveal.
- EXPERIENTIAL KNOWLEDGE