Story highlights
The Surrender Your Say project seeks to raise awareness about Tourette Syndrome
Twitters users gave up control of their feeds to the project for 24 hours
During that time a program posted real verbal tics to Twitter, mimicking the syndrome
“Build a biscuit, put a sheepdog on top,” @sammsy posted to Twitter Thursday morning.
It could be dismissed as just another nonsensical tweet, one of many that fill the social media space. But a closer look reveals the post is followed by a hashtag – #surrenderyoursay – and a link to www.surrenderyoursay.com.
The site is home to a new project from the Tourette Syndrome Foundation of Canada. “Build a biscuit, put a sheepdog on top” is actually a verbal tic, and it’s been posted to @sammsy’s feed as part of project designed to raise awareness about Tourette Syndrome.
Users surrendered their Twitter feeds to the project for 24 hours – sign-up for the project closed late Thursday. During that time, a program posted tweets containing real-life verbal tics, sent to the foundation from people who have Tourette Syndrome. These could be anything from random sounds like “ins ins ins” to swear words to illogical sentences.
“We were trying to think of a way to get people to experience Tourette Syndrome,” art director Rachel Kennedy said. “Twitter is sort of like your online voice… you’re judged on the things you are saying.”
People with Tourette Syndrome suffer from involuntary tics, which can be either verbal or physical. Physical tics may include jumping or twitching. People with the syndrome describe a tic like a sneeze – impossible to hold in without extreme discomfort.
Watch: ‘American Idol’ finalist James Durbin talks about life with Asperger and Tourette Syndrome
Many know it only as the “swearing disease,” but only about 10% of people with Tourette Syndrome swear, says Cathy Wylie, president of the Tourette Syndrome Foundation of Canada.
“The people who have Tourette are really the same as the rest of us, with just these tics added in,” Wylie said. “It doesn’t affect anything else in their life.”
Wylie’s son was diagnosed with Tourette Syndrome 20 years ago. Back then there wasn’t a lot of information available for families. Over time, awareness has increased, but it’s still not a well-understood condition, Wylie says.
“People looked at him like, ‘You should behave – why are you doing that?’” she remembers. “That’s difficult when that’s something you have no control over.”
It’s unknown exactly how many children living in the United States or Canada have Tourette Syndrome. The Centers for Disease Control and Prevention estimates that three of every 1,000 American children have been diagnosed; other estimates are slightly higher.
What is known is that males are three times more likely to suffer than females, and that white children are diagnosed more often than Hispanic or non-Hispanic black children, according to the CDC.
People with Tourette Syndrome usually have an associated disorder as well, Wylie said, such as attention deficit disorder or obsessive-compulsive disorder. Anxiety, sleep problems and learning disabilities are also common.
Users did not have to give the project their password or account information, and they were still able to log in and tweet during the 24-hour period. The additional tweets – or tics – happened at random intervals.
More than 8,900 people agreed to give up their Twitter feeds to Surrender Your Say. Many signed up before the project launched at 9 a.m. ET on Wednesday.
People were very apprehensive about losing control of their online presence, co-executive creative director Helen Pak said. “They say, ‘I’m fearful to surrender for 24 hours and there are people who live with this all the time?’”
For more information about Tourette Syndrome visit SurrenderYourSay.com.