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The theater world is opening its arms to people with Tourette's and autism

The theater world is opening its arms to people with Tourette's and autism
After a friend described Jess Thom's Tourette's as a "crazy language generating machine," she channeled her personal experience into a stage show and broader campaign for more inclusion in the theater world. (James Lyndsay)

Jess Thom has every reason to hate the theater. Thom has Tourette's syndrome, and her tics — randomly spoken words and muscle spasms — had kept her away from the hushed performance halls in her native London.

That all came to a head a few years ago at a show by English comedian Mark Thomas. Thom had alerted Thomas and the venue in advance, and the comedian even introduced her to audience members and let them know about her tics.

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"But even despite all the preparation, there were complaints about noises I was making, and people were threatening to leave," she says. At intermission, she was asked to move to a sound booth — "behind a glass wall, watching separately from the rest of the audience. I found that a deeply humiliating and upsetting experience, and I cried in that booth a lot. I promised myself that I would never go to the theater again. In that moment, it felt like I didn't have the right to be there in the same way as other people."

Eventually Thom, 35, found another place in the house where she wouldn't be asked to leave — the stage.

Thom's two-woman show "Backstage in Biscuit Land" premiered at the Edinburgh Fringe Festival in 2014. Using puppets and audience participation, she and costar Jess Mabel Jones explore Thom's experiences living with her widely misunderstood neurological condition. It's part of a broader project called Touretteshero, which Thom co-founded with her friend Matthew Pountney. Through blogging, performance, TED talks and other events, Thom — often garbed as a superhero — is dedicated to "changing the world one tic at a time." It's activism robed in entertainment, and it all relies on Thom's most potent weapon: humor.

Jess Thom, left, and costar Jess Mabel Jones in "Backstage in Biscuit Land."
Jess Thom, left, and costar Jess Mabel Jones in "Backstage in Biscuit Land." (James Lyndsay)

"Often we're really fearful of laughter," she says, "particularly when it relates to disability. But I think it's a really powerful tool for connecting people and helping people engage with more difficult topics. I don't want to be put off using humor because of the fear about mockery or trivializing disability. A big element of Touretteshero is reclaiming the humor of the condition, and making sure that a laugh sits in the right place, and is a shared laugh."

After years of trying to suppress her tics, one day Thom decided to embrace them. Pountney described her Tourette's as a "crazy language generating machine" and told her that "not doing something with it was wasteful." Out of that, Touretteshero was born.

"Backstage in Biscuit Land" — so named because, amusingly, Thom's most repeated tic word is "biscuit" — unfolds in what is known as relaxed performance, sometimes called sensory-friendly performance. Relaxed performance was born out of film screenings for autistic audiences in the 1990s, and British theaters began introducing the concept about five years ago.

"Fundamentally, relaxed performance opens doors to audiences who otherwise feel like they're not welcome because of traditional theater etiquette," says Salette Gressett, U.S. arts manager for the British Council, sponsor of Thom's North American tour. "It's the hushed reverence, that you must be quiet, you must be still. 'Relaxed performance' means that people who might find it difficult to adhere to those codes of behavior are welcome to that show — whether that's due to learning difficulty, or a sensory or communication disorder, or Tourette's syndrome, or perhaps somebody who has to pop up to go the bathroom a couple times an hour."

From a pilot program in 2012, with participants including the National Theatre and the Royal Shakespeare Company, the practice has spread. In the U.S. it's been adopted on Broadway in performances of "The Lion King," and in venues including the Kennedy Center in Washington, D.C., the Segerstrom Center for the Arts in Costa Mesa and Chance Theater in Anaheim.

"The National Theatre describes it like riding in the opposite of the quiet car on the train," Gressett says. "So that's not to say that it's a chaotic environment, or it's really so much different than the journey in the quiet car. It's just laid back, and it means that more people can come along for the ride."

There’s so much amazing theater. I don’t want anyone to miss out because of preconceptions about who it’s for, or how it should be enjoyed.


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"Backstage in Biscuit Land" will arrive in Los Angeles after stops in New York, Toronto and San Francisco. It will be the Skirball Cultural Center's first foray into relaxed performance.

"Where some people might be inhibited by their tics and their neurological condition, Jess really uses it as a chance to open up space for conversation, and make people laugh, and make people feel like you can talk about anything," says Andrew Horwitz, the Skirball's new vice president and program director. "One of our things is really about being a place of welcome and an inclusive place. It just felt like a really good opportunity, a really good match, to bring Jess here."

Thom's advocacy of relaxed performance is a natural extension of her earlier work coordinating theater and immersive events for disabled children. She hopes her show is "an entertaining, high-quality, amazing, chaotic, unusual hour" — but she also explicitly wants to promote understanding.

"Disability isn't caused by people's impairments, by their bodies," she says, "but by a collective failure to consider difference in how things are set up and organized. I think increased understanding of that as a concept, and increased collective, shared interest and involvement in trying to make our world a more inclusive place will also have an impact on people's permissions to be in public space. There's so much amazing theater. I don't want anyone to miss out because of preconceptions about who it's for, or how it should be enjoyed."

Follow The Times' arts team @culturemonster.

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