Cameron insult takes the biscuit for Jess

When the Prime Minister took a cheap shot at the Shadow Chancellor, Jess Thom took the opportunity to express herself from her own uncompromised point of view

The first thing most people notice about me is my “biscuits”. I’m currently running at 16bpm (biscuits per minute) by which I mean I use the word “biscuit” roughly 16,000 times every day; it’s not through choice though, it’s because I have Tourette’s syndrome and “biscuit” is just one of the tics in my extensive collection.

Tourette’s is a neurological condition characterised by involuntary movements and noises, called tics. My vocal tics range from simple screeching sounds to complex phrases. My motor tics include thumping my chest, throwing my head back and an array of leg movements that make walking chaotic and difficult.

A common misconception is that Tourette’s is just about swearing uncontrollably; in reality only 10% of people with the condition have coprolalia (swearing tics). The entrenched association with swearing is what makes Tourette’s an easy target for lazy jokes that not only reinforce misconceptions and perpetuate stereotypes, but also miss the real and surreal humour it brings.

Although some of my vocal tics do include swearing, they are mostly random collections of words and ideas that draw on anything I’ve ever heard, known or experienced. For example: “Aim your dog at the moon.”

“Alexa Chung died. She stubbed her toe on the edge of the world.”

“Rustling leaves or elephants? Choose.”

David Cameron’s “off the cuff” use of Tourette’s to insult a political opponent once again thrust it into the public eye. As the debate raged in the media, voices of people with Tourette’s were notably absent so I decided to speak up.

I’m used to challenging thoughtless comments and dealing with guilty laughter. I do it every day in shops or on the street and felt the Prime Minister should be challenged in the same way. The brief spotlight of media attention his comments provoked presented an opportunity to encourage people to think differently about Tourette’s.

The Guardian online published an article based on a blog post I wrote, and I gave a number of radio interviews on various stations, both national and local. Initially producers were nervous about putting me on air at all. One commercial station refused altogether for fear my swearing might cause offence. Before each interview I made it clear that I was not willing to have my tics edited or bleeped out because this would be editing out my disability.

My first interview was pre-recorded and broadcast late at night and sensitive listeners were encouraged to turn off their radios for ten minutes to avoid being shocked.

If anything, I’m sure this warning helped increase the number of listeners and the response from those who called in was overwhelmingly positive. I found it fascinating listening to people’s reactions and it reminded me how quickly and simply people’s views can be changed.

The scale of the response seemed to come as a surprise to the producers as well and I was asked to talk again on the station’s breakfast show the following morning.

Again this was a pre-recorded interview and this time there was no dramatic warning. Later that day I spoke on a number of other shows, one of which went out live. It was interesting to see how apprehension about my swearing diminished as the day went on.

Being able to hear what tics sound like is an important way to raise awareness and promote understanding. Many people seem to expect my tics to sound angry or for my thoughts to be confused; some strangers assume I don’t even have a voice independent of my tics until they hear me speak.

Cameron’s comment should not be brushed off as a harmless gaffe. He used Tourette’s as a byword for something inconvenient and unpleasant. Over the years I’ve had to develop the language and confidence to explain Tourette’s because so many people think like this.

Tourette’s impacts on every aspect of my life, but it brings laughter and joy as well as challenges. At the moment the physical impact of tics on my body is something that cannot be changed, but as with other disabilities, the social impact can. Sometimes the social impact of Tourette’s can be crushing, and then changing attitudes feels like an impossible task. But often its not; it’s simply a question of having a friendly conversation.

Two years ago I decided to turn Tourette’s into my power rather than my problem. I created Touretteshero, an organisation that shares the creativity and humour of Tourette’s. We have one simple aim – to reach out and start changing the world, one tic at a time.

• touretteshero.com; twitter.com/touretteshero

Pic credit: Laura Page