Having Tourette’s has definitely made my life different. It’s hard to be “normal” when I’m always drawing people’s attention for the weird sounds I make or the odd behaviors that I just can’t stop doing. I avoid a lot of situations especially crowded places where people stare and sometimes openly laugh. I deal with aches and injuries when my tics get bad. On bad days it can make it impossible to work with my hands, a big problem for someone who works with tiny pieces of wire. I wait for movies to come out on DVD rather than risk upsetting other movie goers with my often loud vocal tics. When I was in school my outbursts were disruptive to classes, teachers were often frustrated with me and other students weren’t exactly accepting of my weirdness.
As many negatives as Tourette’s has brought to my life I’m not sure I’d ever want to get rid of it. With all the bad it has also brought good. I am a different person with Tourette’s, a better person, than I would have been without it. I know what it’s like to be different and I’m a more accepting person for it. I grew up knowing I was different but not knowing why. I remember how that felt so now I make myself available to parents of children with Tourette’s to help them understand what their children are going through. I know what it’s like being bullied and having no one stand up for me… I also know what it’s like to have that one person stand up for me so I try to be that person for others. I like the person I am and I’m sure that had I not been through the struggles of life with Tourette’s I would not be the same person.
If there were one thing I would change it would be people’s perception of the disorder. When I tell people that I have Tourette’s most have little to no understanding of what Tourette’s is. Often they think that it’s a swearing disorder like they’ve seen on TV or in movies. The thing is Tourette’s is not a swearing disorder. The involuntary utterance of obscene words or socially inappropriate and derogatory remarks is called coprolalia. While a small percentage of people with Tourette’s do experience coprolalia the vast majority never do and coprolalia is not exclusive to Tourette’s, it may be a symptom of other neurologic disorders too.
It hardly seems right to stereotype an entire disorder by one rare symptom that it shares with other conditions but that’s how it is with Tourette’s. Any time I see Tourette’s mentioned somewhere it’s as the swearing stereotype. I see it everywhere. A quick joke on a TV show. In movies characters with “Tourette’s” (coprolalia) are used purely for comedic effect (Reality check: Real Tourette’s can be way funnier than just random swearing). In interviews celebrities often refer to themselves swearing like they have Tourette’s. It even shows up in news programs. With popular media doing so much to reinforce the myth that Tourette’s is a swearing disorder it seems to be an impossible task trying to educate the average person on what Tourette’s really is. I do my best to educate everyone I can about Tourette’s; my friends in the Tourette’s community all do the same. We educate one by one and in small groups. When the myth is used on TV, it is seen by millions. Hard as we try educating one by one we just can’t fight against a myth that gets so widely spread by popular media.
As a group the Tourette’s community tends to be overly reactive when we see the ‘Tourette’s is swearing’ bit. It may seem funny to someone who doesn’t have Tourette’s but as a person with Tourette’s it only adds to the lack of understanding I experience. I encounter people who think I’m lucky because they think it means I can swear freely. I’ve had a few opportunities to speak with people who had mocked me and found that until they saw my tics start getting out of control they had no idea Tourette’s was a serious condition. I know parents who struggle with schools that focus on the potential that a child might swear in class while missing the point that the ‘bad behaviors’ the child is being punished for IS Tourette’s. So when we see it on TV or a celebrity’s tweet, a joke with Tourette’s as the punch line it’s upsetting and we respond. We write feedback on network websites, we post on Facebook pages, we send tweets to actors and writers. We almost never receive a response and when we do it’s usually just “sorry you were offended” and nothing more. No changes have come from our efforts.
The one time I personally have received a response was from a TV writer who often responds to me. He had re-tweeted someone else’s picture of a t-shirt with “What do we want? A cure for Tourette’s. When do we want it? (expletive).” To say I was upset at seeing this would be an understatement. Here is someone I respect, a writer on my favorite TV show, who’s written some of my favorite episodes, who I follow on Twitter and most importantly seems to me to have a good understanding of right and wrong. Yet there he was making fun of MY condition. In my anger I responded with the first thing to come to mind which was to call him a jerk. I shouldn’t have done that. I should have stopped and realized that maybe he didn’t know that joke is offensive. He sees the condition portrayed as a swearing thing as often as I do maybe even more since TV is his business. Had I been thinking I should have first asked him if he realized that tweet was offensive. From the tweets I received in response to calling him a jerk he didn’t know how offensive it was because he didn’t know that Tourette’s isn’t about swearing. Had I not reacted emotionally I would have first asked him if he realized that it was offensive to equate Tourette’s with swearing and used it as an opportunity to educate him about what Tourette’s really is. By calling him a jerk I put him on the defensive and less open to understanding why I was upset. I wish I had responded differently, I may have still called him a jerk but I wouldn’t have started off with it. I already knew but this incident really highlighted that being reactive isn’t accomplishing anything. If I want anything to change I need to start being proactive about it.
If I want to make progress in getting people to see that Tourette’s isn’t about swearing I need to be proactive. Instead of waiting for someone to be involved in reinforcing the myth and then trying to tell them why it upsets people with Tourette’s I need to work on educating them before they do it. With social media maybe I have a chance at getting my message seen. I’d like to ask everyone who reads this to pledge not to be part of continuing this myth that Tourette’s is a swearing disorder and then share this post. Share it with your friends and family and then if you follow a celebrity on Twitter or like them on Facebook send it to them too. Share it with actors and writers, anyone in a position to be heard by many. I’m not optimistic enough to hope I can completely change how people see Tourette’s but maybe I can get my message seen by enough people to at least have fewer people confusing coprolalia for Tourette’s.
I’m not saying I want to see referring to Tourette’s as a taboo subject. In fact I’d like to see more mention of Tourette’s, make it more well-known so I don’t always have to explain, I’d just like to see it used as it really is. If random outbursts of swearing is your thing use it but call it what it is, coprolalia.
Ready to learn more about Tourette’s?
http://tsa-usa.org/aMedical/whatists_cov.html Tourette Syndrome Association
http://tourette.ca/ The Tourette Syndrome Foundation of Canada
http://www.atrandom.ca/ An excellent Tourette’s documentary, you can choose how long you want to watch, it is different every time it’s viewed just like no two cases of Tourette’s are exactly alike
http://watch.thirteen.org/video/2135738235 “Different is the New Normal” a great hour long documentary
http://www.tourette.it/tourette.it/home.html for anyone who speaks Italian this site was recommended, I don’t speak it myself but I trust the person who sent it to me.
“Against Medical Advice” by James Patterson and Hal Friedman
“Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had” by Brad Cohen with Lisa Wysocky
“Tic Talk: Living with Tourette Syndrome, a 9-year-old boy’s story in his own words” by Dylan Peters
“Twitch and Shout: A Touretter’s Tale” by Lowell Handler
Movies featuring Tourette’s
Phoebe in Wonderland
Front of the Class
The Tic Code, I love the way Gregory Hines’ character deals with the bully in this movie.