Band of Artists looks to defy stereotypes of Tourette’s syndrome with dance

As Featured in The Intelligencer

The Unveiling showcases the creativity inspired by TSThe movements are brisk and sharp, the bodies moving with a concentrated intensity that veers deliberately toward the erratic.

The eruptions — a leg that flails here, an awkwardly jerked arm, a barely restrained full-body twitch — aren’t that unusual considering the context: a dance performance to be staged as part of the Live Arts Festival + Philly Fringe.

But then there are the grimaces and outbursts — the shouts, the barking — and the gestures whose repetition, like the hand striking the face over and over, suggest a tendency toward compulsion or even violence.

Tourettes: A Dancing Disorder 2012 DancersTo Sutie Madison, the untrained eye may still see only an avant-garde performance, befitting the 16-day festival, which begins Friday and transforms Philadelphia into a cauldron of strange, raw and unfettered creativity. But the seven dancers and live musicians, including a violinist and two hand percussionists, that she has gathered are working from an impulse beyond the purely artistic.

Madison, of Ambler, has lived with Tourette’s syndrome since she was 8 and the show she’s created for the Philly Fringe, “Tourette’s: A Dancing Disorder,” which will be performed over two weekends at both the Painted Bride Art Center and Arcadia University, uses the tics of her condition as the foundation for its choreography.

With her company, Band of Artists, she is hoping to dispel some of the stereotypes associated with the neurological disorder while promoting a greater understanding of those afflicted with it.
Dancer Gema Valencia-Turco emerges from the veil, which symbolizes a cocoon or protective layer that she ultimately shakes off to discover, and embrace, herself as being different in the world.“Most people think (Tourette’s) is just a swearing disorder, where you walk around cursing. Sure, that exists but only about 10 percent of people have that form of Tourette’s which is called Coprolalia. That’s definitely a media-romanticized stereotype that we’re trying to destigmatize a little bit,” she says. “But it’s not just about tolerance of people who are different but seeing there’s actually an artistic quality to Tourette’s. I see Tourette’s as a personal language system. It’s my way of moving through the world.

“My tics, my physical movements feel almost like antenna. I sort of use them to measure space around me. There’s a certain intelligence in that that people aren’t aware of yet, and I find that really compelling and powerful.”

The choreographer, who formed Band of Artists in January 2011, says she was never overly self-conscious about having the disorder. As a young girl, she learned how to suppress her tics, which include jerking her head, blinking hard and making a barking sound, while in school to avoid being picked on. But around age 16, she decided to stop hiding.

“I wasn’t freaked out about it or walking around stressed about it. I was just like, ‘I have Tourette’s.’ As I started to let it out of the bag a little, people would be more accepting and comfortable,” she says. “As I got older and I started to embrace myself as an adult, then I became really out in the open and I was the one advocating for myself.”

Although, as a girl, she studied theater and dance — primarily ballet — she was pursuing her bachelor’s degree in fine arts with a concentration in painting at Arcadia when she returned to her love of movement. She recalls working on a large painting alone in a studio when frustration gave way to inspiration.

“I was trying to paint from my gut, really fast and intuitive. … I felt like it wasn’t interactive enough and I wasn’t moving enough. I was drawing very dance-like, movement-like images, and I wanted to explore that with my actual body,” she says. “Having Tourette’s syndrome most of my life, I finally started to use it as an artistic medium. I noticed the kinetic nature of the disorder was such that the movements, the vocal tics, started to look kind of almost like a dance.”

An experimental video of layered images and sounds that she created as she twitched in a tangle of chains convinced Alan Powell, a visual artist and communications professor at Arcadia, that exploring her disorder as an art form could be Madison’s unique brushstroke.

“The Tourette’s movement is generally seen as disruptive. When you take it and repeat it in a structure, it could become a dance. It’s the same thing with the barking. It could become music,” says Powell, who today serves as assistant director for Band of Artists.

That is, of course, what informed the vision behind “Tourette’s: A Dancing Disorder,” which will feature two pieces, “Intersection: Tourette’s Syndrome,” which premiered at the Community Education Center in Philadelphia last December and deals with the struggle to fit societal norms, and a new piece, “The Unveiling,” which speaks to broader themes of acceptance and unity. Sandwiched between the performances will be a symposium with a neurologist sharing medical facts about the disorder.

Stephen DiJoseph, a musician from Buckingham who’s had Tourette’s since he was 6, will open the performance with an original composition that will include footage from “A SynapTic Adventure: Tourette’s and Beyond,” an autobiographical film he’s producing about his childhood struggling to make sense of his various strange urges and compulsions. Over the course of developing his career as a multi-instrumentalist and composer, he learned to use those tics as a collaborative partner, referring to them as “accentuations” or “exclamation points” in his music.

DiJoseph was drawn to Madison’s project because of its rare perspective.

“My goal is to bring people into a whole different experience of (Tourette’s), to offer a sort of virtual guide, an immersion into the experience of it and see it from a different place,” he says. “It’s part of spectrum disorders and spectrum disorders in general have so many lives — it’s important to bring out all this stuff.”

Being part of the company has been eye-opening for its dancers.

One, Theresa Westwood, a freelance modern dancer who grew up doing ballet, admits initially she was uncomfortable simply learning the choreography. In addition to modeling her own tics for the dancers, Madison had them watch medical DVDS exploring the many twitches associated with Tourette’s.

“They’re movements that aren’t natural. They’re very stiff, very sharp — some of them can be very painful, and they’re doing these tics hundreds of times a day,” says Westwood, of Philadelphia. “For me, it’s just been about learning tolerance on a personal level. I really hope people see Sutie’s passion and the value in her message.”

Norfolk, Va.’s Ronald Parker Jr., whose training is in hip-hop, ballet and modern dance, says he’s generally unfazed by disorders and illness that make others uncomfortable, having grown up with two sisters with sickle cell anemia. But he’s gained a new appreciation of what it means to be different by being able to tangibly embody it in this production, which he believes ultimately transcends Tourette’s.

“It’s really about the human condition and being courageous enough to honestly share who we are,” says Madison. “I hope people find it empowering.”

-Naila Francis, Twitter: @Naila_Francis [Originally published in The Intelligencer and Bucks County Courier Times, and posted online at on Friday, September 7, 2012 5:00 am | Updated: 9:14 am, Fri Sep 7, 2012.]; article and photos reposted with permission from Calkins Media Inc.