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Tourettes is the only superpower I’ll ever need

  June 20, 2016   

Artist, performer, and part-time super-hero, Jess Thom has worked in play settings and for a local authority. Now she’s appearing in the media and on stages around the country, shaking up popular perceptions of her neurological condition, Tourette’s syndrome, and celebrating its humour and creativity.

‘I’ve been lucky: I’ve always worked in very open, flexible environments. Even so, working life has been challenging at times. About five years ago, my mobility deteriorated to the point where I had to use a wheelchair and I started having daily seizures. That was tough. I knew I needed help but I was scared of losing the support I was already getting.

Eventually it reached a point where I had no choice but to speak up if I wanted to carry on doing the job I loved.

'Access to Work and my employer, Oasis Play, were quick to respond. They arranged for me to have a support worker with me at all times and my employer set up a safe space where I could go during my seizures. We also drew up a care plan so people around me knew what to do. As a result I felt safe and included, and able to carry on working productively. The support I needed was there all along – it was my attitude that needed to change.

‘At the start of 2016 I left my job to focus full-time on Touretteshero. The project was born out of one of the many conversations I’ve had over the years about Tourettes with my friend and colleague Matthew. Often those chats would end in tears, but that day he just happened to refer to my vocal tics as a “crazy language generator”. It was a lightbulb moment, and marked the start of my being able to think about it as something to embrace and celebrate.

‘We launched Touretteshero in 2010, and it’s grown beyond anything we could have expected. The idea is to challenge perceptions, and get people thinking again about Tourette’s. The Gallery of Tics is a good example – it’s a celebration of those random collisions that are happening in my brain every day. It feels wasteful not to put those ideas out there and let people enjoy them, laugh at them and use them to inspire their own stories. That’s where the idea of the tics as a superpower comes in – they allow me to access a level of spontaneous creativity I don’t think I’d be able to reach otherwise.

As well as the website, the campaign has sparked some great collaborations.

'We’ve worked with partners including scientists, academics and other artists and performers, the most obvious example being the show Backstage in Biscuit Land. The show was inspired by my own experience of going to the theatre to see the comedian Mark Thomas. Even though the audience was told about me beforehand, people complained and I was asked to sit in a sound booth. It was so humiliating, and it got me thinking about culture and the barriers we put in people’s way: Who is theatre really for? Who says you have to be quiet when you go to a gallery?

Since then we’ve taken the show all over the country and the reaction has been incredible. We’ve also organized events such as We Forgot The Lot! at Tate Britain, where 300 children and young people with Tourette’s came and took over the gallery.

‘Our starting point is the idea that making theatre and art inclusive makes it better – and that benefits everyone. Similarly, Touretteshero is for anyone who’s interested in comedy – not just people with lived experience of disability. I want people to feel more comfortable thinking and talking about difference. There are so many fixed narratives about disability, and such a narrow range of ways in which it’s portrayed, and I want to offer an alternative. It’s about reclaiming the laughter, not using it to reinforce negative stereotypes.

The whole process – writing the blog, recording the tics, creating the show – has been so important for me personally too in terms of changing my own attitude to Tourette’s.

'I spent years trying to ignore it, living despite my tics rather than living with them. This has given me the time and space to think and reflect and realize that mixed in with all the negative experiences there have been a lot of positives too.

‘The way my mind works brings challenges, but I’ve come to realize that it also adds a lot to my life. It brings so much laughter, and it focuses my attention on details of the world around me that I wouldn’t otherwise see. I’m grateful for that. My friends sometimes say they’re quite envious of the ideas and concepts I’m able to come up with. That’s very different from the conventional perception of disability. I wouldn’t want to change the person that Tourette’s has made me.

‘I think experiencing exclusion has made me a more thoughtful and empathetic person, and it’s forced me to look for creative ways of overcoming barriers. It’s also made me more angry and frustrated, but those are very useful emotions to draw on if you want to bring about change. I feel really passionate about doing what I can to make the world more inclusive and equal, not just for me but for children and young people, both disabled and non-disabled. As we get older we seem to develop this idea that difference is somehow wrong or embarrassing, and that’s not the case. It’s just a part of the world we live in.’

Jess’s Top Tips

Don't put things off
Sometimes people with Tourettes talk about waiting for their tics to get better. My advice would be, don’t wait for things to change. Find a way to make it happen now.

Ask for help
I let myself reach crisis point before I asked for the support I needed. When I did, it came quickly – and it made a huge difference. Needing help isn’t a sign of weakness, it’s a sign of openness.

Tell your story
Having the confidence and the language to explain my experiences to other people has been a huge help to me in my working life. Giving people permission to ask questions about Tourette’s has been a really effective way of breaking down barriers.

Our thanks to Jess for sharing her story with us.