Jessica Thom’s Tourette Syndrome Superhero Educates, Entertains and Inspires [Video]
A neurological condition that the CDC says affects nearly 150,000 American children, Tourette Syndrome has been popularized in the culture by its conspicuous symptoms including involuntary physical and verbal tics, which can sometimes include obscene language and gestures. There is no cure. Jessica Thom is one of an estimated 300,000 afflicted Britons, and her solution to the deeply inconvenient and socially stigmatic symptoms is one that’s earned her International attention. Thom created the identity of Touretteshero, a costumed character whose light-hearted idiom undermines prejudice and misunderstanding by embracing the humor and peculiarities of the syndrome in the form of original artwork inspired by tics and by staging interactive events for children with Tourette’s.The secret origin of Touretteshero: hailing from the neighborhood of Peckham in South London, England, Jessica Thom experienced tics when she was a young child. Laura Page wrote in The Independent that “Throughout [Thom’s] school years she experienced making involuntary movements and noises and remembers saving up her tics to let them out secretly in the toilet (these days she can only supress a tic for up to 16 seconds). By the time she was a teenager she realised she had Tourette’s. She was only properly diagnosed in her early twenties.”
Thom, who sometimes says the word “biscuit” as many as 900 times an hour, was despondent about her condition until a friend observed that Jess’s involuntary tics were in effect a “crazy language machine,” and encouraged her to channel the resulting material into something creative. Thus, Touretteshero was born.
Touretteshero’s mission, as detailed on the project’s website:
To celebrate and share the creativity and humour of Tourettes in an accessible way, with the widest possible audience.
To increase awareness of Tourettes and its challenges without self-pity or mockery.
To take ownership of the laughter associated with Tourettes in order to provide a genuinely funny cultural alternative.
To suggest informal ways of dealing with the challenging social situations that people with Tourettes often face.
To run innovative events for children and young people with Tourettes that focus on the value of play, interaction and social inclusion rather than any associated ‘problems’.
The Touretteshero initiative provides a forum for Thom to work with young children and the public towards those goals, and her success has been remarkable. The Touretteshero website reportedly enjoys millions of visitors, and the great Stephen Fry included Thom’s work in one of his routinely excellent documentary series, this one focusing on the nature and role of language. You can see that material below, but be warned that it does obviously include NSFW language.
In addition to documenting Thom’s various events and media outings, the Touretteshero website keeps a searchable index of all Jess’s involuntary verbal outbursts, including those that might be considered obscene. Coprolalia and Copropraxia are the rarer forms of Tourette Syndrome that involve swearing, and Thom has both. She writes that even those tics are documented because “leaving them out would be editing out a part of my disability.” As part of her mission to own and celebrate the humorous component of her condition — “Tourettes isn’t funny but lots of tics are” — Thom’s tic index includes 45 cross-referenced tic categories as well as a rating system by which visitors can vote for the funniest remarks. A quick scan found these comics-and-geek-relevant remarks:
Would you like the key to Batman’s foreskin?
I know Batman intimately, he’s my father’s father.
Ben 10 Architectural Awareness Week
Robots in disguise (as mums).
You know Batman’s a lesbian?
Wolverine died, tumour of the testis.
I tenderly f**ked Dan Dare.
Batman broke my bed last night. Doo-da, doo-da.
Lion-O died – cat AIDS.
Teenage Mutant Ninja F**k-Buddy.
The website also hosts a gallery of artwork inspired by verbal tics:
The Touretteshero project strikes me as a fabulous way to live with this most challenging condition, and the community outreach aspect is particularly impressive and obviously in keeping with Thom’s choice of the superhero idiom. Rather than run or hide from the social and physical pains that are inherent to Tourette Syndrome, Thom has taken ownership of her own unique nature and channeled it into something genuinely innovative that’s improved not just her own life but also those of the people she’s inspired. “Touretteshero is a powerful character,” said Thom, in The Sun. “Tourette’s is not the hero’s problem, it is her power.” This is a triumph of art.