Gord Brown is used to being interrupted.
When he shakes his head, sticks out his tongue, or cannot get through a sentence without shouting “woo” or “Nina,” Brown’s own brain is cutting him off, and taking control. But starting Wednesday the polite 53-year-old will be interrupting others, or at least a “Gord bot” based on his daily life with Tourette Syndrome will be.
“It’s not something that’s in the thinking part of my brain,” Brown said, speaking from his home in Kitchener, Ont. “It’s like an itch. We can suppress it, to a point. But you need to relieve the pressure.”
The Surrender Your Say http://www.surrenderyoursay.com campaign, designed by ad agency Saatchi & Saatchi in Toronto for the Tourette Syndrome Foundation of Canada, is asking people to experience something akin to what it is like to live with a widely misunderstood disorder. People who sign on will give permission for a bot, based on one of 12 real people living with Tourette Syndrome, to send out tweets on their behalf for 24 hours. Each participant can continue to post on Twitter, but without warning, additional messages will appear on their feed representing a Tourette tic – such as “Ins ins ins ins ins ins,” or “Muah mmmuah,” or, if they have the Gord bot, “Nina Nina Nina.”
The chemical imbalance in the brain that causes physical tics and verbal outbursts – and which affects more than 350,000 people in Canada – is most often mocked in popular culture as a disease that makes people swear loudly. The objective of the campaign is to foster understanding that goes beyond that lazy perception.
“I was one of the many who was misinformed,” said Helen Pak, executive vice-president and co-executive creative director at Saatchi & Saatchi.
“Some of the people in our agency knew nothing, and the other portion who knew something thought it was the swearing disease. We kind of laughed about it, ‘Oh it’s that disease where people swear, it’ll be really easy to create a campaign with that.’ Then we started researching.”
In fact, inadvertent outbursts of inappropriate language – the technical term is coprolalia – applies to fewer than one in 10 people with the disorder. People struggle with a wide variety of tics (the disorder always includes at least one verbal and one physical), including the compulsion to burn themselves with cigarettes, shouting out, clenching their shoulders, or throwing their hands up with their middle fingers raised.
In a series of documentaries http://www.atrandom.ca Saatchi & Saatchi made for the Foundation two years ago, one man spoke about feeling confined to his house, and trying to mimic the “normal” movements of people he observed – like learning a second language. Another broke down in tears as he spoke about the frustration of not being able to make lasting friendships.
“Some people are lucky that their social skills are very good, and they’re in a good situation where people accept them. But that’s not the norm,” said Cathy Wylie, president of the Tourette Syndrome Foundation of Canada. “There’s a bit of that ostracism, and even fear from some people.”
This has real impacts on the emotional health of children: In research on the disorder, parents reported a high incidence of bullying and teasing of their kids because of their tics. And it affects job prospects when they grow up. According to a 2002 study, the rate of unemployment among people with TS is four times higher than the general population, even though learning disabilities or delayed mental development is by no means a universal feature of the disorder.
The campaign is not seeking donations for the foundation, but is primarily about education. Each tweet the bots sends out on participants’ behalf will include a link to a website explaining the campaign, and the hashtag #surrenderyoursay. While it begins Wednesday, people can sign up any time.
“Twitter really is a digital version of a sidewalk,” Pak explained. “You’re scrolling through, and it’s almost as if you’re walking down a digital street and hearing all these sound bites. Certain things may look jarring and get attention, and you’re quick to judge.”
Brown is familiar with that: He’s accustomed to people giving him funny looks, or even crossing the street to get away from him when they see his tics in public. Dating is difficult, he says. But he has also experienced great support and acceptance at work as a clerk at Canada Post.
“They almost don’t notice any more – whoop, nice – see that’s something I do,” he said, explaining a tic in real time. “I don’t know why. It became ‘nice’ for a while, and now the ‘n’ is disappearing and I’ll say ‘ice’ a lot. When I introduce myself I say, ‘Don’t worry about it, that’s just me.’ ”
Brown lives on his own, and his house is paid off. He wants to be a role model for kids who are struggling – to show them the life it’s possible to have.
“A lot of times we’re used as a punchline. But we’re trying to get away from that,” he said. “Education is the key. The more something like this gets out – the more you know about it – the easier it’s going to be.”
By the numbers
60 to 90 per cent: the number of people with Tourette Syndrome who also have another disorder, such as ADHD, OCD, a learning disability, etc. (75 per cent of children and teens with TS also have ADHD, and 60 per cent have OCD).
There are three to four times more males than females with TS.
50 per cent of people with TS have reported that it influenced their job choice either “a great deal” or to “some degree.”
20 per cent said they had been fired because of it.
17 per cent said they were denied a job owing to their condition.