From the Huntingtonian Wonderlands with Love

Dingdingdong (the sound of a joyful ringing bell) is a multidisciplinary group of visual artists, writers, clinicians, philosophers, a choreographer/dancer, and social scientists engaged in the project of creating and transmitting knowledge about Huntington’s disease through theater, dance, the visual arts, and other media. Our overriding aim is to investigate and communicate the perspectives of HD persons. By HD persons we mean not only those of us living with the symptoms of HD but also those of us who know we will develop these symptoms in the future (persons with an expanded repeat), caregivers, siblings, spouses, and others directly related to the disease.

For the World Congress in Rio de Janeiro, we wish to offer a poetic and dramatic interpretation of HD in the form of narrative scenes, dance, and video, to explore the multiple experiences of HD from the inside in all their complex depths and nuances. The tone of the show will be positive and upbeat, in order to communicate the sense of hope we share–and intensively work for–in Dingdingdong.

We wish this performance to be entertaining as well as educational. Therefore we offer these short scenes as a kind of laboratory and an invitation to investigate HD through the arts. Even as we participate in the biomedical community’s efforts to develop treatments and a cure for HD in the future, we believe that the arts offer an additional dimension for addressing HD’s challenges today.

Synopsis: Three Scenes

a. Narrative performance

On stage, a conversation between a young woman character who carries the expanded CAG repeat and several other characters, some of whom already have symptoms and others who are asymptomatic family members. This piece aims to talk about “Every Thing You Always Wanted to Know About HD — But Were Afraid to Ask. » Topics may include everyday adventures, feelings and sensations of living with HD; love, sex and HD; the stare of uninformed others–and how to deal with it; kids and HD etc.
This section will be created from testimonies collected by Dingdingdong’s team in France, Belgium, the Netherlands, and the USA specifically for this project. Members of our team will interview people personally involved with HD (as sufferers, caregivers, asymptomatic relatives, persons at risk etc.) primarily in the Netherlands, Belgium, and France. We may also draw on testimonies previously gathered from the US. This part of the show will highlight the idea that whatever questions we might ask about this sickness, they first of all concern life itself – rather than symptoms.

The tone of this sequence (hopefully!) will be funny as well as profound, philosophical and poetic. Emilie Hermant, a published novelist, and Alice Wexler, nowadays most important historian working on HD, will be the main authors of this section.

b. Video

A fictional scene in the office of a neurologist in which a young woman at 50% risk receives the news that she carries the expanded CAG repeat and will eventually develop the symptoms of HD. Rather than emphasizing the tragic aspects of Huntington’s, this video will explore alternative ways of presenting the results of a positive presymptomatic genetic test. Instead of conceptualizing HD as « neurodegenerative, » this scene will explore the possibilities of HD as « neuroevolutive, » inviting the carrier on a journey of metamorphosis where he/she is going to gain new feelings, sensations, insights. In short, rather than focusing on inexorable losses, we will highlight creative potentialities. This speculative piece will draw on the rich traditions of predicting the future, from divination practices (oracle, tea leaves, Tarot) to video games. It will take its inspiration from fiction as well as from reality.

Fabrizio Terranova, a filmmaker and playwriter, and Katrin Solhdju, a philosopher working on HD’s predictive test practices, will be the main authors of this section.

c. Dance

On stage, a dancer performs a “portrait in motion” of D., a real individual who is living with HD and who has volunteered to participate in our project. This portrait re-enacts the very particular motions and dynamics of D. in several moments of his everyday life. For this section, the choreographer Anne Collod will work with a real patient–« D »–in his own apartment as well as in her dance studio. She will use the Laban system of dance notation to « write, » in a choreographic language, the specific motions of a person with chorea.

This section of the program will use dance and choreography as an experimentation to investigate the body’s involuntary choreic movements. We will explore the contributions that HD–the « dance disease » par excellence–might make to contemporary dance. Conversely we will investigate the ways that the theory and practices of dance might illuminate and extend our knowledge of the body’s movements in HD. Anne Collod will be the main author and performer of this section.

Duration and Languages

The show will last between 45 minutes to one hour, and will be performed in English (oral, subtitled in Portuguese), French (oral, subtitled in English and Portuguese) and Portuguese (subtitles).

Author/performers:

Anne Collod

Anne Collod is contemporary dancer and choreographer. She has worked with Anna Halprin from whom she proposed a re-enactment of her 1965’s Parades and Changes, created at the Festival d’Automne in Paris in 2008, which received a Bessie Award in New York in 2010. Anne is currently working on a new creation on “macabre dances”, for which she has done some investigations in France, Mexico and Japan. She is also working on “choreographic portraits” of persons with HD, writing with Laban’s method their particular dynamics and motions. She lives in Paris.

Emilie Hermant

Emilie Hermant is psychologist, writer, photographer and HD gene carrier. She has founded Dingdingdong and is curently writing its encyclopedic adventure. She lives in Paris. Published books on HD (in French): Le manifeste de Dingdingdong (Dingdingdong’s manifesto), Editions Dingdingdong, Paris, 2013. Anouck Rivières, portrait Dingdingdong n°1 (Dingdingdong Portrait n°1: Anouck Rivières), Editions Dingdingdong, Paris, to be published in 2013. Pas moi (Not me), novel, Editions Lanceur, Paris, 2010. Réveiller l’aurore (Awaking the dawn), novel, Editions Le Seuil, Paris, 2009.

Katrin Solhdju

Katrin Solhdju is a historian and philosopher of Sciences and Medicine at the Center for Literary and Cultural Research in Berlin. She also teaches at the School of Graphic Research of Brussels (Belgium). She lives in Brussels. She currently works on the contemporary and comparative histories of HD genetic testing.

Fabrizio Terranova

Fabrizio Terranova is filmmaker, playwright, and teacher at the School of Graphic Research in Brussels. He has directed Josée Andréi, an insane portrait, an experimental documentary produced by Michigan Films & Rien à Voir, 2010, and is currently developing a video game on the topic of HD.

Alice Wexler

Alice Wexler is an independent historian, secretary of the Board of Directors of the Hereditary Disease Foundation, and a Research Scholar affiliated with the UCLA Center for the Study of Women. She is the author of The Woman who Walked into the Sea: Huntington’s and the Making of a Genetic Disease (Yale University Press, 2008) and Mapping Fate: A Memoir of Family, Risk, and Genetic Research (University of California Press, 1995). She is part of the Journal of Huntington’s Disease’s editorial committee. She lives in Los Angeles.

Participating also to the elaboration of the project, as members of Dingdingdong:

Vincent Bergerat (artist), Liisa Cervières (artist), Alexandra Compain-Tissier (artist), Didier Debaise (philosopher), Vinciane Despret (psychologist and ethologist), Emilie Hache (philosopher), Bruno Latour (philosopher and sociologist), Valérie Pihet (project curator and coordinator), Fabien Siouffi (video game executive), Stéphanie Soudrain (artist), Isabelle Stengers (philosopher), Sophie Toporkoff (art director), Katia Youssov (neurologist).