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 

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It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were naïve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at Spirited Blessings.

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