Today’s the start of Tourette Syndrome Awareness month. Some people might question why Tourettes needs a whole month of awareness. After all it’s a condition that most people have heard of, it’s frequently mentioned on TV, in films, by celebrities, and on social media sites, and I imagine it regularly crops up in casual conversations between friends. But while many people might think they know all about Tourettes, very few actually do.
The public perception of Tourettes consists largely of myths and stereotypes. For example, in most people’s minds it’s become inextricably linked with swearing, even though only 10% of people with the condition swear uncontrollably.
Public understanding matters because how other people react has a big effect on how easy or otherwise it is to live with Tourettes.
I remember how much easier things became for me in the few years after Pete Bennett took part in Big Brother and won. I overheard many conversations on buses during which people recognised I’d got Tourettes because of what they’d learnt from watching him. Increasing awareness helps to break down fear and build empathy.
But Pete’s appearance on Big Brother wasn’t just important because it helped other people understand me better. It was also key to me accepting that I had tics myself. It enabled me to have conversations with my friends about my experiences, something I hadn’t had the confidence to do before.
Raising awareness isn’t just about educating people who have no connection to the condition – it also helps us, our families and our friends develop a better understanding of what’s going on, and it’s an on-going task. Like watering a plant, it’s something that needs to be done continually. There will always be new people to introduce to Tourettes and its surreal, challenging and creative complexities.
While there won’t ever be a time when all the work’s completely done, we’ll know we’re getting there when:
1. A family can say their child has Tourettes and be met with understanding rather than assumptions
2. Tourettes stops being a by-word for swearing
3. I can make a phone call and say I have Tourettes without hearing a titter of laughter from the person at the other end
4. Doctors confidently diagnose Tourettes Syndrome and don’t feel the need to call it by another name to spare the child from prejudice
5. Tourettes is understood to mean more than tics alone and when the less visible aspects of the condition are appreciated more widely
6. Lazy jokes about Tourettes are no longer acceptable
While it’s great that the Tourette Syndrome Association of America has initiated this month of awareness-raising activities, speaking out to increase knowledge of Tourettes is something we can all do at any time and anywhere.
Raising awareness doesn’t have to be about big acts: speaking up on a bus is as valuable as being interviewed on TV. I used to think that changing attitudes was a long, slow process but soon after creating Touretteshero I realised that attitudes can often change quickly and easily. It’s a shared link, an answered question or a conversation. It’s something that we can all play a part in, whether we have Tourettes or not. Real change will be brought about when there’s a critical mass of small acts coming together.
So not only this month but every month please share your experiences, speak up amongst friends and show others what a complicated, interesting and creative condition Tourettes Syndrome really is.