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Friday, December 14, 2018

These children can neither move nor speak. Clowns and engineers are trying to listen to their inner worlds | In the Lab - STAT

When they set out with their red noses, a ukulele, and a kazoo, the clowns had no intention of toying with the boundaries of consciousness. They just wanted to make sure they weren’t scaring any kids, observes Eric Boodman, general assignment reporter.

Therapeutic clowns Helen Donnelly (left) and Suzette Araujo visit Krystal, who has lived at Holland Bloorview Kids Rehabilitation Hospital in Toronto for 15 years.
Photo: Chloë Ellingson for STAT
It seemed unlikely. As clowns go, these two were pretty unscary: Ricky wore suspenders and a propeller-topped beanie, Dr. Flap wore a lab coat and an aviator’s cap, and neither used any makeup. Still, they knew that their audience’s wishes were too often overlooked, and wanted no part in that pattern.

For a therapeutic clown, silliness is serious business. Helen Donnelly, who personifies Dr. Flap, had spent years on stages and under big tops, traveling with Cirque du Soleil, doing solo shows, speaking made-up languages, dancing in front of clotheslines hung with cuts of meat. When she started working at Holland Bloorview Kids Rehabilitation Hospital in Toronto, her absurdities took on a different aim: to transport kids out of the disorienting realities of medical treatment and into imaginary worlds where they had a sense of control.

“I’m so glad I’m just a professional idiot, I’m so glad I’m not a grownup,” she’ll say — but she’ll also tell you that she was among the first clowns in the world to make notes in medical records. She and her clowning partner round the wards alongside doctors and respiratory therapists. Their acts of tomfoolery are referred to as interventions, sometimes taking place during injections and wound-dressing changes.

The kids who first prompted Ricky and Dr. Flap’s concerns, back around 2007, were those who — for reasons of brain injury or birth defect, stroke, or seizure — could neither move nor speak. The pair had all sorts of tricks up their sleeves, devised for a whole range of differing abilities. They improvised songs and soundscapes. They juggled scarves. They blew great glistening bubbles and pretended to gobble them up...

Even while the device is still in development, parents see biomusic experiments as an opportunity not to be missed, the rare lens through which they might catch a glimpse — however fuzzy — of their kids’ inner worlds. All of that emerged from an encounter between some clowns and a Ph.D. student caught in the existential wilderness of a dissertation project gone awry.

By then, Blain-Moraes had already spent years of her doctoral research trying to decode what these kids might be feeling. She knew that spikes in emotion often came with physiological changes — a prickle of sweat, a quickening pulse — but she was having trouble observing those signals in kids with profound disabilities. She had tried repeating the kids’ names over and over again, mimicking canonical psychology studies. No luck. She had asked parents to bring in objects their children liked or hated: A beloved toy dinosaur or a dreaded toothbrush, she figured, would provoke enough of an emotional response for her machines to pick up a bodily reaction, too. But she was getting nothing...

Stefanie Blain-Moraes, at the Centre for Interdisciplinary Research in Music Media and Technology, housed at McGill University.
Photo: Mikaël Theimer for STAT

Blain-Moraes had come to Holland Bloorview looking for a glimpse of human interaction. She’d spent three undergrad years at the University of Toronto, among the equations of the engineering department, and though she loved the certainty of math — “the clockwork,” as she put it — something was missing. “It was very logical: no room for subjective experience, no room for artistry,” she said. She had almost gone to music school. She remembered being 7 and strapped into the backseat of the car, kicking out the fanfare-like rhythms when her mum slid Beethoven’s Ninth into the tape deck. In math competitions, she’d been quick to the buzzer, but in church choir and school band, she’d felt at home. It was only when she heard a talk by a Holland Bloorview researcher that she knew she’d found the engineering equivalent.
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Source: STAT


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