Tuesday, August 23, 2011


Copralalia,  involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks, is a VERY rare symptom of Tourette Syndrome. In fact, only 10% of people diagnosed with TS have copralalia; however, many of us living with TS have had to deal with the prejudice caused mostly by media sensationalism. You've probably seen talk shows or movies that portray people "suffering" from TS who randomly shout obscenities or use highly offensive racial slurs. While I can understand the fascination the rest of society has with this tiny percentage, it is very important to me to debunk this assumption that we all have it.
While looking on cafepress.com for TS advocacy tshirts, I came across a lot of shirts with this sort of thing.

While I have a very good sense of humor about my TS, and John and I make jokes and tease each other a little bit as a coping mechanism, I would never wear a shirt like this. It would simply add fuel to the fire of a society that still kicks people with TS out of restaurants, movie theaters, and libraries. It keeps us separate and simply reinforces the stereotype that people with TS should be avoided.
My son just started 2nd grade, and he currently has a lot of motor and vocal tics. I have to go in every year and discuss with his teacher and the many support staff members that they do not need to worry that my son will scream "Fuck you!" when someone bumps him in the hallway.  
I certainly don't mean to demarginilize those with copralalia or make the assertion that they are making it harder on the rest of us. They have to deal with challenges the rest of us experience on a smaller scale. Being twitchy gets quite a lot of side-eye, sniffing usually evokes a lot of concerns for our health, and when my son snorts other children think he's pretending to be a pig and laugh. But I have actually had people back up with fear in their eyes when I announce that my son has Tourette's. Until the media representation of Tourette's is accurate, the stigma will only continue. If you're looking for accurate portrayals of people with TS, check these out.

Phoebe in Wonderland
A brilliant movie about a girl diagnosed with Tourette's. Watching this movie was like watching a moment in time in my own life, and it haunted me and made me cry and made me squeeze my son and tell him just how extraordinary he is.

I Have Tourette's But Tourette's Doesn't Have Me
These kids are badass! It's about acceptance. It's about education. It's about overcoming.

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