Jess Thom was diagnosed with Tourette syndrome at age 26. She says the word ‘biscuit’ approximately 16,000 times a day, along with other words and phrases like ‘hedgehog’ and ‘fuck’, which are vocal tics that have developed throughout her life. She also has motor tics where she pounds her chest and tics that lead to seizures, meaning it’s safer if she uses a wheelchair to get around.
“I’ve had tics since I was about six, but as a child they were much milder and less noticeable to other people,” says Thom. “In my early 20s they began to intensify and have a bigger impact on me and my life.”
Now 36, Jess Thom is the creator and performer of a globally successful show, Backstage in Biscuitland, and she’s the co-founder of Touretteshero, a website that celebrates the humour and creativity of Tourette’s – two positive outcomes from a number of negative experiences Jess has endured from other people’s reactions to her condition.
Jess used to find it really hard to talk about her tics without tears, but a conversation with her friend and co-worker Matthew Pountney transformed her perspective. “He described Tourette’s as a ‘crazy language-generating machine’ and told me that not doing something creative with my tics would be wasteful. That idea really took root and helped me understand that they were in fact my power and not my problem.”
Thom and Pountney used that power to create Touretteshero back in 2010; however, in the following year, Jess experienced a humiliating night at a London theatre where she was asked to sit in a sound booth so as not to disturb other audience members. The experience was devastating for Jess, but it also led to a new mission: to create a space where she would be accepted.
“I’d spoken to the theatre in advance, met with the performer and he’d explained to the audience that I had Tourette’s. It felt like we’d done everything right but despite all that, people still complained about the noises I was making and I was moved to a sound booth at the side of the stage.
“I sobbed in that sound booth. I was absolutely devastated, and I promised myself that I would never go to the theatre again.”
Thankfully it wasn’t a promise she kept: “I saw that there was a different approach and that was to occupy the one seat in the house that I wouldn’t be asked to leave: on stage.” Instead Jess and Matthew (along with puppeteer Jess Mabel Jones) went on to create a show that is unpredictable, joyful – and most importantly – accessible to everyone.
“Making theatre inclusive makes it better,” says Jess. Each one of Backstage in Biscuitland’s performances is a relaxed performance, which means that the audience is encouraged to make noise, move and tic. They’ve had performances with Auslan interpreters too, and they have audio descriptions so that if you can’t see what’s happening on stage you can still get a feel for it.
“Having as much integrated and embedded access within the show is important. We don’t have interpreters at every venue, but my tics can be quite suggestible and quite cheeky – while they’re not things I’m thinking or saying, the environment can definitely influence them – and that is an interesting dynamic with an interpreter. Every show is different and they can’t plan for it.”
“People often assume they will find things distracting but once everyone’s been given that permission to relax and respond naturally, and you understand why something is happening, it makes it much easier to get on and enjoy the show and if it’s absorbing it will hold your attention.”
This is also true of Jess’s tics. At first you may notice every time she says ‘biscuit’ or ‘hedgehog’, but over time it’s very natural for your mind to edit those tics out and listen to her thoughts and opinions clearly. She says, “Certainly for me, my thoughts are totally biscuit-free.
“My tics can be funny and surreal in a way that I can only dream of. I think humour is a really powerful tool for connecting people and bringing them together. Simply by considering difference, we can create less disabling spaces, and that’s really exciting to me. It’s about understanding that everybody does things differently rather than assuming people are able to do things in exactly the same way.”
Backstage in Biscuitland is on at Sydney Opera House on Mar 5 & 6 as part of the Kids at the House program and the All About Women festival.