Updated: May 12
Tourette’s: Your Story Matters is a two month project, that is creating a short film about young people’s experience of living with Tourette’s. To find out more, we interviewed Nigel Ashworth, the creative lead for the project.
Can you tell us where the idea for Your Story Matters came from?
I joined Tourette’s Scotland in summer 2020, so am a new face in this special community. I also arrived with a unusual idea, to use the power of storytelling to help the Tourette’s community.
The creative arts offer a wonderful escape from the challenges of Tourette’s and many of us love to draw, play music or create online content. I make digital artwork and never tic when I’m working on it.
My main creative work is in the theatre as a director and playwright. I’m passionate about the power of storytelling to show deep truths about our lives and reach people in emotional ways. Through sharing stories we connect with people in ways that facts just can’t.
Our first initiative was to start a monthly Storytelling Group in January this year. Here people get to write their own stories and share them with each other. But it’s hard to fit writing into busy lives. Also I’m very aware that writing can be bring pressure and practical difficulties for some people. So I wanted to find another way to capture people’s stories that was easy for them to take part in.
Young people with Tourette’s have an amazing capacity for compassion and understanding. Their emotional maturity is well beyond their ages and I hope more people find the special people I discovered, working on this project.
How are you working with the young members of Tourette Scotland?
We started in April 2021 with 11 young people from across Scotland who wanted to share their experiences of growing up with Tourette’s. The first step was to speak to each one, on their own (sometimes supported by a parent) over zoom. I would listen, ask questions and take notes. In the end we did 18 hours of zooms and collected 13,500 words of notes. They all had a lot to share.
I took all their experiences and combined them into a single story that reflects their experiences at home, school and in the outside world. I shared this story back to the group and got their ideas on how to make it better.
Now I’m writing the full script for our reading. I’m also assembling a team of professional actors and professional video makers to film and edit our reading.
What do you hope this project will achieve?
Tourette’s is a complex and sometimes contradictory condition. Unless you have it or someone in your close family has it, it’s likely you will only see the external signs of Tourette’s. Views about Tourette’s have been shaped by documentaries or online videos. All our young contributors, shared a feeling that Tourette’s wasn’t well understood and they want to change this.
It was clear to me that we need to show what Tourette’s feels like from the inside not just the tics that are visible on the outside. In this way, I hope to give new insight for our community and wider society into the constant struggle of Tourette’s.
We hope our story will open up conversations about growing up with Tourette’s. So that teachers who refuse to adapt to the needs of kids in school or refuse to even attend training, will realise the impact of their actions. That families will get to see their son or daughter, brother or sister with Tourette’s, in a new, deeper way. That medical and social care workers will look beyond Tourette’s as a diagnosis or treatment plan and engage with the whole person to understand how they feel.
I especially hope that our 11 brilliant, young contributors feel proud of what they are creating with me, it’s a real partnership. I’m deeply humbled that they trusted me with their very personal thoughts and feelings. Young people with Tourette’s have an amazing capacity for compassion and understanding. Their emotional maturity is well beyond their ages and I hope more people find the special people I discovered, working on this project.
Can you give us a sense of what the story be like, when we see it?
This initial project will create a 20-25 minutes long dramatic piece that will be read by professional actors in early June. We are going to film this reading and share it on the Tourette Scotland website and through social media. We hope you will watch it and give us your thoughts.
It is going to be quite a dark story because this is what our young contributors chose to talk about with me. In parts, it might be hard to watch but it’s their truth and I want to honour that. But I hope people also find it uplifting, knowing they want the world to hear about their struggle with Tourette’s, from the inside. To know you’ve been heard and then see your truth reflected back is very empowering.
I know some young people have been lucky, been to schools that accepted them, didn’t get bullied, had supportive families. But what connected our group together were the scars of going to schools or shops or just walking down the street, of having to deal with the onset of Tourette’s, in a mostly hostile world.
We hope our story will give the Tourette’s community a new way to think and talk about life with the condition. A way that doesn’t focus on the tics but focusses on the inner experience of Tourette’s, one that doesn’t make those with Tourette’s the centre of the conversation but puts those around them at the centre. Why do people stare, why do they laugh, why do they trigger tics, either accidentally or on purpose? Why do they not believe what we say, call us faker, attention seeker? Why do they tell us to stop when they know we can’t.
From everything you’ve heard, how would you now describe Tourette’s to someone?
We can cope with our Tourette’s, we have to. It’s the wider world we have the most problems dealing with. As a storyteller, I describe Tourette’s as like owning the world’s worst behaved pet. You didn’t ask for it and can’t control it. It keeps doing things that other people don’t like and you get the blame. Even worse, it looks just like you, so trying to blame it on your pet, isn’t really believed.
Huge thanks to Nigel for sharing his work on this project. We are so looking forward to seeing the filmed reading next month. If you are interested in finding out more, please email firstname.lastname@example.org