Tourette syndrome (TS) is a rare, and widely misunderstood neurological condition. It causes involuntary vocalizations or movements, which are called tics. This can appear in many forms: repetitive throat clearing or blinking, arm jerking, or accidentally blurted words or noises. There’s a popular stereotype that people with Tourette syndrome blurt out curse words, although that symptom only occurs in about 10% of the TS population. To learn more about this rare condition, click here.
Touretteshero, the alter ego of Jess Thom, is a superhero with a mission to educate, entertain, and laugh about the joys, struggles, and humor of living with Tourettes syndrome. It’s also the name of the project which infuses the TS experience with creativity and fun. Thom co-founded the project, and still helps manage it, although since its inception, it has grown to include many other creative people with Tourettes who contribute to the project.
Thom started Touretteshero years ago to celebrate the condition that she used to feel embarrassed by. Thom, an artist, comedian, and coordinator, experiences various verbal tic. She famously says the words “biscuit” and “hedgehog” thousands of times the day. She found this difficult, until she found a way to see it as funny.
Touretteshero.com gives a space for this transformation. In one section of the site, Thom records tics she finds funny or strange, such as “Boris Johnson was milking astronauts.” Viewers can’t contribute tics, since there isn’t a way to validate authenticity. Thom explains in the FAQ section that it’s essential the tics are genuine, and not a stab at a cheap joke. However, many people contribute by drawing literal interpretations of the tics: doodles of chinchillas who know themselves intimately, or illustrations of brave little toasters.
Thom embraced her biscuit tic specifically, by turning it into the comedy show, Backstage in Biscuit Land, which she performed at Edinburgh’s Fringe Festival in 2012, and the following autobiography, Welcome to Biscuit Land. During the show, Thom tapped into the creative advantages Tourette syndrome offered. Not only did it supply her with comedic material, but, as she explained to the Guardian, it gave her an unpredictable edge. Each time she performed the show, it was a new version.
“I’m neurologically incapable of staying on script.”
In addition to providing lighter take on life with Tourette syndrome, Touretteshero also offers educational informational and resources on the condition, to help break common myths, and guide people who struggle with TS.
From the beginning, Touretteshero aimed to host inclusive, fun events, where people with or without disabilities could come together in a space full of creativity. So far, the events have catered to a variety of ages. They started with a party for kids, and then held a night event for adults. More recently, they’ve worked on events that both children and adults can attend.
Their latest production was a weekend-long, immersive experience called “Brewing in the Basement.” It included daytime activities for families, magic mirrors, yarn mazes, and music. At night, it featured performances from a blind performer, a deaf poet, and a bipolar pop star.
The feedback has been glowing. Touretteshero, has once again, enchanted the world with a joyful celebration of both Tourettes, and various other conditions that make the world a more interesting and creative place.
