A few months ago I fell in love with four Australians. They were over in the UK to film a piece about creative approaches to Tourettes. They filmed with me, Ruth and comedian Luke Montague who also has Tourettes. Their feature airs across Australia on the Channel 7 Sunday Night programme tonight.
I filmed with them several times over two weeks. The crew consisted of presenter Rahni, producer Alex, soundman Dan and cameraman Matt and I enjoyed working with them all a great deal. They were friendly, funny and showed me enormous empathy. I’ve been filmed and interviewed about having Tourettes a number of times but I’ve never worked on a piece as in depth as this. Because of their approach I felt able to share aspects of my life I’d not allowed to be filmed before.
Previously, the only person who’d filmed me having a ‘ticcing fit’ was Leftwing Idiot and he’d done it for my doctors to see. Other than that I’d always asked for them not be filmed. But towards the end of my time with the Sunday Night crew I decided I’d like them to film me fitting. I trusted them to tackle it with sensitivity, so when we were filming a few days later and I started to fit, they left the cameras rolling. King Russell was on hand to support me, which means, as Fat Sister points out, it’s quite likely her husband will make his Australian TV debut spooning me.
Luke, Ruth and I all have coprolalia, the medical term for swearing or offensive tics. We are however firmly in the minority – 90% of people with the condition don’t have swearing tics at all. But risqué tics aren’t the only things the three of us have in common – we also share a creative approach to Tourettes.
Ruth sings, Luke performs and I’ve created this website. If you’re new here, please have a good look round. There’s my daily blog, the gallery full of tic-inspired art, thousands of tics to enjoy, information on the FAQ page and plenty of opportunities to get involved. You can do this by commenting on my posts and following Touretteshero on Twitter and Facebook and you can also support what we do by donating or by buying amazing items from our online shop.
Because I’m one of the 10% who have swearing tics, some of the content on this site is rude, but you can make all the explicit content disappear by turning on the SafeMode. If you like what you find here, keep an eye out for my book Welcome to Biscuit Land which is being published in the UK tomorrow.
As well as interviewing me, the Channel 7 crew also came to the Summer Party where I work. This event was a celebration of community, inclusion and creativity, so it seemed right that Luke should run a comedy workshop, Ruth should sing, and I should lead an art activity.
During the film crew’s visit I had a loud, jubilant tic that they seemed to really enjoy. It was half said and half sung (like an aerobics instructor):
“…And bears, 6, 7, 8”
Their response to this tic and many others was spontaneous and gleeful. We even recorded a playful conversation I had with Rahni in which she and I wove the ideas introduced by my tics into a bizarre story. After we’d finished filming I sent the crew a drawing I’d done for them of the tic.
Talking publically about Tourettes and explaining its impact on my life doesn’t often feel like a choice, but more like something I need to do in order to have a good quality of life. Not much can be done to change the unpredictability of Tourettes, but a lot can be done to make other people’s reactions less unpredictable. I really enjoyed working on this piece with the Channel 7 crew and I hope the programme helps increase awareness and understanding of Tourettes, its challenges and its creative potential.