Actor didn’t let Tourette’s stop him
Let’s talk about Tourette’s.
It’s not all about swearing and shouting – in fact, just 10 per cent of people with the disorder have the vocal tic causing them to repeat inappropriate words.
A lack of understanding can make struggling with Tourette’s a lonely battle, actor and comedian Paul Barrett says.
Tourette’s syndrome is a paediatric neurological disorder characterised by involuntary movements or vocalisations called tics. Barrett discovered he had the disorder when he was 10 years old and was bullied throughout school because of his tics.
‘‘Having Tourette’s can be deeply humiliating – being a teenager is bad enough anyway.
‘‘I keep reading these posts from mothers of children with it saying they’re being mocked at school and my heart breaks because I can only think: ‘I remember, I know what it’s like’.’’
The St Heliers man says talking about Tourette’s is the only way to dispel the many misconceptions.
Barrett has never let the disorder hold him back, carving out a successful 34 year career on stage and in front of the camera.
‘‘You have to work harder to control the physical twitches.
‘‘I was always terrified of being examined close up by a camera so it’s taken me a long time to get comfortable and I’m still not entirely,’’ he says.
Barrett is a finalist in the Artistic Achievement category of the 2014 Attitude Awards which celebrates the accomplishments of people with disabilities.
The Tourette’s Association of New Zealand director Robyn Twemlow says Barrett’s nomination is great for public awareness.
‘‘It’s fantastic – we want these sort of positive role models.
‘‘It’s important for people to see there’s light at the end of the tunnel and you can be a successful person.’’
The association held a gathering of children and adults with Tourette’s called Camp Twitch, in Hanmer Springs last month.
The biannual camp was the first of its kind in New Zealand and will alternate between the North and South islands in the future.
Many people who attended the camp had never met another person with Tourette’s, Twemlow says.
‘‘A lot of people still hide it and think they are the only person in New Zealand with it.’’
About 800 children are estimated to have Tourette’s in New Zealand.
Twemlow founded the association last year after her nine-year-old daughter was diagnosed and she discovered there were no national support groups.
People often assume a child just misbehaving, she says.
‘‘There’s no understanding of it whatsoever and that’s within the health system, the education system and the general public.’’
Twemlow says the organisation is focussing on building up its community before it starts to address how to introduce guidelines into schools to help children with Tourette’s.
Centre stage: St Heliers actor, director and musician Paul Barrett has never let Tourette’s syndrome hold him back.