Monday, August 8, 2016

That's not a problem. It's a power!

By Megan Jones

When acting, Jessica Thom never stays on script. In fact, she’s neurologically incapable of it: the London, U.K.-based performer has lived with Tourette syndrome for decades. Her tics cause her to experience muscles spasms and to randomly speak words thousands of times a day. Onstage, this means nothing goes quite as planned.

In 2014, Jessica began performing Backstage in Biscuitland with actress Jess Mabel Jones. The play uses puppets, props and audience participation to celebrate and demystify Tourette’s. Since then, it’s been performed in the U.S., Canada, Norway and Bosnia, among other places.

The show is just one facet of Touretteshero, a project that the 36-year-old co-founded with longtime friend Matthew Pountney. On her Touretteshero blog, Jessica writes about her life with the neurological condition and catalogues her tics, inviting people to make artwork—images or poems or music—in response.

Here, she weighs in on growing up with special needs, making theatre more inclusive, and why laughter is an activist’s most powerful tool.

BLOOM: Backstage in Biscuitland is random, unconventional and sometimes quite absurd. How did the play come to be?

Jessica Thom: The roots of the show are in the difficult experiences I’ve had accessing live performance. In 2011, for example, when I was attending a comedy show, I was asked to move to a sound booth because of the noises I was making. We’d met with the performer beforehand, he’d explained my Tourette’s to the audience, but despite all that planning, I got singled out.

As I sobbed in this sound booth, I promised myself I would never go to the theatre again. It felt like an experience that I couldn't access. But I was lucky to have friends and family who showed me there was another way. So eventually I decided to take to the stage—the only seat in the house I wouldn’t be asked to leave.

BLOOM: In which ways does the play fit into your broader project, called Touretteshero?

Jessica Thom: Like the play, the purpose of the site is to share my experiences with Tourette’s, and to celebrate the creativity and humour of the condition. We’re interested in drawing attention to the invisible barriers that exist within our society that prevent people from being included. Lots of exclusion happens because people don't experience difference. If something doesn’t directly affect your life, it can be easy not to give it much thought. That’s why disabled people need to speak out about barriers.

BLOOM: You’ve spoken in the past about the need for relaxed performances. How does Backstage in Biscuitland fit that model?

Jessica Thom:
Backstage in Biscuitland is also about our belief that making art inclusive makes it better art. All our performances are relaxed performances—they welcome people who might find it difficult to follow conventional theatre etiquette. People are free to move in and out. We also build audio description into the dialogue for people who can’t physically see the set, and try to offer captioned or interpretive performances whenever possible.

Finally, before a show, audience members can participate in 'touch tours.' We allow people to touch the props we use onstage. It’s useful for someone who is blind, but also for someone who’s on the autism spectrum.

BLOOM: You often say that incorporating disability will enhance the theatre-going experience? Why is that?

Jessica Thom:
Being inclusive will make theatre experiences more dynamic for everybody. If you take my show as an example, every staging is different because I’m literally incapable of doing the same show twice. Jess Mabel Jones’s job is to keep us on track and not let my tics make the play an hour of rambling about lampposts. Left to my own devices I probably would. But my tics keep the show interesting.

BLOOM: You’ve got some interesting outfits as well. What’s with the superhero persona?

Jessica Thom: The persona is a way to reframe my tics not as my problem but as my power. They let me do things that neurotypical people can’t. I’m constantly colliding strange ideas. It took me a long time, but I was eventually able to see my unusual neurology as a valuable source of creativity.

BLOOM: Right, let’s talk about that process. What was it like to grow up with Tourette’s?

Jessica Thom:
When I was younger my tics were much less noticeable to other people. But they were there. At school I would save tics up and then wriggle about frantically in the bathroom. Or sit on my arms and legs to give myself pins and needles just so I could feel a different sensation in my body. As a kid, I didn't have much space to talk about my disabilities. There was a lot about them I didn’t understand. I thought I was bad or evil.

Generally though, I was well-supported, and I can still vividly remember moments when adults were understanding when they could have responded poorly. When I was very young, I whipped a basketball in my teacher’s face during gym class. It was an uncontrollable action. He ordered me out of the room straight away, but as soon as I told him that I hadn’t meant to throw the ball, he accepted my reasoning and let me rejoin the class. I thought that was an incredibly brave decision.

BLOOM: As a child with a disability how did it make you feel to be listened to?

Jessica Thom: It made what was a frightening situation manageable. I think children have an innate openness to being inclusive of different types of people. It’s important that that’s nurtured. We adults can’t let our discomfort be transferred onto the young people we’re raising or supporting.

BLOOM: So kids really are the future then.

Jessica Thom:
A few days ago I wrote about my friend’s daughter, Ruby. Her mom had told me that at bedtime recently, Ruby discussed how parks could be built to better suit kids who used wheelchairs. She naturally understood the social model of disability—that we need to focus on changing environments, not people—at age four. If a preschooler is able to brainstorm ways for everyone to be able to participate, why on earth do I spend so much time explaining this concept to adults?

BLOOM: How did you get to a point where you felt you could accept and even celebrate your tics? I think many young people struggle with that.

Jessica Thom:
As my tics started to have an increasing impact on my daily life I found myself having more conversation about Tourette’s with my friends and family. During one conversation with Matthew, he described my tics as a 'crazy language-generating machine.' That idea really captured my imagination. I was able to see value and creative potential where I’d only ever seen something to be ignored, minimized and dismissed. A conversation has the potential to spark change.

BLOOM: But that doesn’t mean there aren't still challenges.

Jessica Thom: Of course not. My tics now affect my ability to walk, and I use a wheelchair most of the time. That means I have a simple, visible disability. When I was walking independently my tics were visible but they were often interpreted as me being drunk or dangerous, and people often responded with fear. These days, people are more likely to be supportive or empathetic. But they’re also more likely to behave in a way that’s condescending—they make assumptions about my ability to work or think independently.

BLOOM: I’ve read online that you say the word biscuit 16,000 times a day. Is that true?

Jessica Thom: Yes! We didn't count for a whole day, obviously. Years ago my brother-in-law counted how many times I said biscuit over five minutes and then multiplied it. It gave us a good laugh.

BLOOM: Speaking of which, a big part of your show is finding humour in your tics. What makes self-deprecation a valuable tool?

Jessica Thom: Laughter can make us feel empathy; it can make difficult situations more manageable. My life would be innately more challenging if I didn't find humour in some situation.

Often, people are afraid of using jokes, especially linked to disability. But I think it’s important to consider where laughter sits. There are so many jokes about Tourette’s out there anyway. I remember seeing a video of somebody pretending to have the condition. It had 30 million views. I just thought, “Wow 30 million people are really missing out. Because the reality of life with Tourette’s is much funnier than this.”

BLOOM: And people are probably more receptive to your message if they feel like they’re in on the joke.

Jessica Thom: Right. I think laughter and humour can be used to get people to think about things they might find difficult. We tend to switch off if we think we’re getting a lecture.

BLOOM: What advice do you have for kids with disabilities who might be feeling isolated?

Jessica Thom: Learn about the social model of disability as soon as you can. I don't think there’s any age where a child is too young to be introduced to the idea that it’s not about fixing people it’s about fixing environments. Learning I have the power to change my environment to fit my needs has been an important part of my journey as a person with a disability.

BLOOM: And what about parents?

Jessica Thom: Help your kids build positive memories—they can be protective. We focus on events for young people because by building positive memories, children have something to draw on if times get tough. Building a resilience in children with disabilities is an act of resistance. If kids with disabilities have high expectations for themselves and for others, we’ll have a much more inclusive society. Damaged confidence is much easier to prevent than it is to repair.

Photos by James Lyndsay