Eloge of Movement

Maira, in her little red dress, was a specter of my childhood.

Homeless, she moved through the streets of my hometown in a relentless, jerking rhythm—a dance of her limbs beyond her control. Her face, twisted by violent grimaces, and her voice, hurling insults at passersby, made her a figure of fear. People avoided her, crossing the street to escape her path.

They called her La Loca Maria—Insane Maria.

Years later, in France, as I searched for ways to navigate my father’s cancer diagnosis, I uncovered medical records describing movements strikingly similar to Maria’s. It was then I learned the truth: Maria wasn’t insane. She was living with Huntington’s Disease (HD). Without knowing, she had been my first encounter with this rare, neurodegenerative condition society had conditioned me to fear.  

HD is an incurable genetic disorder that progressively strips away motor, cognitive, and psychiatric functions. Its hallmark is chorea, involuntary movements named after the Greek word for dance. In medieval Europe, doctors reported outbreaks of “dancing mania”, where groups of adults and children—sometimes thousands at a time—danced erratically until collapsing from exhaustion.

Misperceived as divine possessions and known as Saint Vitus Dance, these manifestations are now understood as HD. This history of prejudice and fear echoed my own experience with Maria.

My discovery led me to the French Huntington Association, which put me in contact with Marcela Gargiulo, a clinical psychologist at the Institute of Myology and the Department of Genetics at Pitié Salpêtrière Hospital, and Dr. Alexandra Durr, a neurogeneticist at the Institute of the Brain and Spinal Cord in Paris.

They illuminated the devastating effects of HD’s genetic lottery: a 50% chance of inheritance, the impossibility of a cure, and the psychological toll of genetic testing. For families, HD fragments bonds, isolating both those affected and those spared.

In my quest for creative engagement with the HD community, Marcela and Alexandra introduced me to Philippe Chéhère and Julie Salgues, contemporary dancers whose families are affected by HD.

In 2003, they pioneered a series of dance workshops for HD patients, caregivers, and medical professionals. Held bimonthly in spaces ranging from hospitals, dance studios, or museums, these workshops create a haven to "dance" free from judgment. At-home workshops are also available for dancers unable to travel.

The participants represent a broad spectrum of HD. Some are unaware of their genetic status, others have tested negative, some are positive but asymptomatic, and others are in advanced stages of the disease. While some manage their symptoms with neuroleptics, which suppress chorea but cause drowsiness, others, like Maria, endure HD without medication.

The workshop’s protocol was carefully crafted.

It begins with a warm-up to foster awareness of the body’s weight and balance. Gradually, participants are guided to explore new bodily perceptions of space and time, expanding their range of movement. The workshop's core centered on improvisation encourages dancers to trust their bodies and embrace their involuntary movements, transforming them into choreography.

This process liberates the ill body, allowing it to dance with the chorea itself in a celebration of gratuitous energy expenditure through bodily creative expression.  

Sessions close with meditation, concentration exercises, and collective massages to enhance the sensual power of the ill body, as it consciously affirms its place in society as an active and autonomous dance performer.

Joining these transformative workshops changed my perception of the ill body, and I became a regular participant. Invited to document the workshops, I captured intimate moments of grace where illness and art collided.

Over time, doctors observed remarkable effects: enhanced motor and cognitive coordination, heightened body awareness, increased self-worth, and a sense of community among participants.

By 2013, the workshops’ impact expanded beyond its original scope, as they motivated Dr. Durr to collaborate with Iris Trinkler, a dancer and scientist from the Institut Mondor de Recherche Biomédicale, to launch a neuroscientific study on the benefits of dance for HD patients.

To celebrate the workshop’s 10th anniversary, we performed in front of a live audience at Micadances during the Week of Disability. We also released Eloge of Movement, a one-hour documentary featured at Cinema Grand Action for the Week of the Brain and the European Huntington’s Disease Network Plenary in Barcelona.

A 15-minute cut aired on France Télévisions during the Telethon, the world’s largest fundraiser for rare disease research, reaching an audience of 10 million viewers.

The day after the Telethon, I returned to my birth country, drawn by the inevitability of my father’s final battle with cancer. Maria had disappeared from the streets, but her red dress still lingered in my memory, echoing a transformation within me—fear had given way to resolve, a solemn vow to honor the ill body, not as an outcast but as a vital presence with a story that deserves to be told.

Through my creative practice, I aim to weave these stories into the fabric of society, reshaping stigma into understanding and isolation into belonging.