In 2010, I had a conversation with my friend Matthew in his kitchen; a conversation which would go on to change my life, my career and, I hope, the world.
The two of us were discussing Tourettes Syndrome, a neurological condition that I had recently been diagnosed with and which means that I make movements and noises that I can’t control. At that time, these 'tics', as they are known, were having a big impact on my confidence and expectations.
Matthew and I had had conversations about Tourettes many times before, and they had always ended in tears. This time, however, was different.
When Matthew described the condition as ‘a crazy language-generating machine’ and told me that ‘not doing something creative with it would be wasteful’, the idea took root and helped me recognise my tics as my power, not my problem. From there, we went on to co-found Touretteshero, an organisation that uses humour and creativity to increase understanding of difference, break down fear, and work to build a more inclusive society.
Put simply, our mission is to change the world 'one tic at a time.'
Changing the world: one tic at a time
Tourettes is one of the most frequently misunderstood conditions on the planet. Lots of people have heard of it, but their knowledge is often based on myths and stereotypes. For example, it is often characterised as the ‘swearing disease’ when, in fact, only 10% of people with Tourettes have obscene tics; I am one of them but, even then, I am as likely to shout about domestic appliances, dinosaurs or b-list celebrities as I am to swear.
Through Touretteshero, I have re-cast the symptoms of my condition as springboards for creativity as my vocal tics crash brand new ideas together, creating incredible new concepts and surreal imagery:
“It is the hippies of outrageous fortune that weigh heavy on the minds of dogs".
“Replace every chimney in London with a penguin".
“God's moving to Watford on Sunday”.
We also invite people to make artwork in response - seeing tics transformed by other people’s talents is incredibly exciting.
More likely to shout about biscuits than swear
You see, Tourettes can be very funny.
When we started Touretteshero, this felt like a risky thing to say. Of course, the condition’s not amusing in itself, but my tics are often so spontaneously funny that I only wish they had been intentional.
Lots of the situations I find myself in are funny too - imagine me at the airport explaining to Security that there isn’t actually a bomb in my bag...
A few years ago, I watched a video of someone pretending to have Tourettes – it had had almost 30 million views. I remember thinking “Wow! Everyone watching this is being short-changed.” The reality of life with Tourettes is much funnier than that.
Rather than complaining about what was already out there, we set about providing an alternative.
Since then, I’ve performed to diverse audiences on stages across the world. This has included giving a TEDx talk at the Royal Albert Hall, creating the Edinburgh Fringe Festival award-winning show Backstage In Biscuit Land, talking to comedian Russell Howard about “Jedi’s in Dungarees”, and giving Cambridge University’s 2015 Annual Disability Lecture on the power of humour.
If we can get people to engage, we can get them to change
The subject is close to my heart; after many years of being afraid of other people’s laughter, I’ve come to appreciate humour as one of the most powerful tools we have for connecting with each other.
I used to think that changing attitudes would be a long-drawn-out process, but Touretteshero has taught me that change can happen very quickly. It often starts with a conversation, a question, or a shared laugh. Creating change doesn’t have to be a battle; it can be joyful, persuasive, discursive, and even silly. If we can get people to engage, we can get them to change. This is something that I believe applies everywhere.
In fact, when I read a survey describing how people in the UK use their time, I was shocked to discover that most people spend an average of only six minutes a day laughing. Thanks to Tourettes, my friends and I laugh a lot longer than this.
Touretteshero’s taught me many things; one of the most important lessons is that if something’s not working I can change it.
This isn’t because I have any special super powers...it’s because we all have the ability to create change.
One tic at a time.