They blink, they grimace, they jerk, they moan. No matter how hard they try, their bodies, minds, or voices won’t do what they’re told. People with Tourette Syndrome (TS), a neurological disorder, are the subject of the irreverently titled Twitch and Shout , a riveting, unsettling, and frequently funny insider’s look at what it’s like to live with this bizarre and often misunderstood condition.
Twitch and Shout is told through the eyes of Lowell Handler, a photojournalist who has traveled around the world taking pictures of people who, like himself, have TS. Their stories are fascinating, aweinspiring, humorous and sometimes heartbreaking. Desireé Ledet, an aspiring New York City actress, tells how men often misinterpret her involuntarily twitching eyebrows as a sexual comeon. David Jansen, an Alberta lumberjack, recalls the time he thought of taking a knife and cutting out that devil inside him. Mahmoud Abdul-Rauf (formerly Chris Jackson), a basketball player for the Denver Nuggets who has integrated his TS tics into his distinctive kinetic playing style, says he channeled the obsessive behaviors into hours of practice that have improved his performance on the court. In 1993, he received the NBA’s Most Improved Player Award. “For every infirmity,” he says, “God gives you a strength.”
Producer-director Laurel Chiten was 27 when her involuntary muscle tics were finally diagnosed as Tourette Syndrome. She says she made the film because “I felt it was important to bring TS out of the closet. I didn’t want people to go through what I’ve gone through without any knowledge of this disorder.” Named in 1884 for Gilles de la Tourette, the French physician who first attributed the disorder to neurological causes, TS was still widely mistaken for a psychoanalytic condition until as recently as the 1970’s. An estimated 100,000 Americans have TS, with symptoms ranging from mild physical tics to prolonged, violent spasms. Only 15-20 percent experience coprolalia, the obsessive use of profanity.
Twitch and Shout not only sheds light on the nature of this puzzling disorder, it also examines the way society all too often heaps scorn and abuse on those who stray, however involuntarily, outside the limits of conventional behavior. Toronto artist Shane Fistel has such a pronounced case of TS that a simple walk down the street is transformed into a restless, idiosyncratic ballet. “When people get drunk they go down the street screaming and picking fights,” he observes. “It may be frowned on, but it’s not unacceptable. It’s tolerated by society, whereas my tics are not tolerated. They’re seen as something different, something aberrant, something strange.”
Only once every other year, at the Tourette Syndrome Association convention, are people with TS guaranteed a chance to forget about possible unpleasant responses to their involuntary actions. “For one time, we’re in the majority,” one grateful convention goer says. “We don’t have to hide. We don’t have to watch what we say. It feels great. Here we’re normal.” The film takes its name from the exuberant TS convention dance, where an uninhibited crowd boogies down to the tune of their theme song “Twist and Shout.”
“I really want Tourette Syndrome to be brought out of the closet into the world so people have an understanding,” says Chiten. “But it’s beyond that. What I’m really trying to do with this film is say come here. Come look at us. Come talk and laugh and cry with us. We’re really not all that different from you.”
Twitch and Shout, winner of the Best of Category award at this year’s San Francisco International Film Festival, also received a 1994 CINE Golden Eagle and the WorldFest Gold Award at the Charleston International Film & Video Festival. Noted neurologist Oliver Sacks praised the film’s heartfelt evocation of the richness and range of Tourette Syndrome, from the inside. The Boston Globe called the film “a powerful blend of drama, humor, and heart” and The Village Voice praised it as “a riveting hour.”
The broadcast has been scheduled to coincide with National Tourette Syndrome Awareness Day on July 15. Tie-in activities, in conjunction with the TS Association, will include press screenings with local chapters around the country.