TouretteConnect November 2020

Dear Friend,

“Words matter.” It’s a phrase we hear and use frequently. It’s also something that can be a particularly tricky mine field for those living with Tourette Syndrome (TS) and, more specifically, coprolalia. In October, we shared with you a story out of Indiana where a young man living with TS was asked to leave his college campus as a result of offensive and unnerving phrases he involuntarily uttered. Unfortunately, this isn’t the only incident that has come across my desk in the last few weeks. In another instance, the police were called on a young high school girl as a result of a tic, despite her lacking any history of violence or aggression. Elsewhere, a man was fired by his employer of 7 years after ticcing a socially inappropriate and offensive word. In each of these instances the institutions who penalized these individuals were fully aware of their Tourette Syndrome diagnosis—an ADA-protected disability—and took little to no consideration of their words in the context of their actions or their character.

“Words matter.” So how do we use our words to combat the injustices so many in the TS community experience? We create change, eliciting compassion and understanding by sharing our stories and our experiences. We use action words, like advocacy, education, awareness and empowerment. These are words that motivate and inspire. The Tourette Association of America’s (TAA) upcoming Youth Ambassador training, for teens aged 12-17, and Rising Leader training, for young adults 18-25, are being held virtually on February 26 and February 27, 2021. These trainings, for which applications are now open, offer new and engaging ways for teens and young adults to learn how to speak up and advocate in local communities across the country. And National Advocacy Day, which will take place virtually on March 3, 2021, offers another opportunity for the community at-large to meet with local state representatives and discuss pressing issues that affect you and your loved ones on a daily basis.

“Words matter.” Words like compassion, inclusion, and understanding aren’t just buzz words to use to bolster one’s reputation or dismiss poor judgement – they are words that genuinely make a difference. With your help, we can spread awareness and understanding far and wide to ensure another college or high school administrator doesn’t unilaterally dismiss an otherwise kind, intelligent and deserving individual from their campus. To ensure another employer doesn’t dismiss a long-standing employee who has demonstrated professional success because they uttered a word they personally do not support. You can get involved whether or not you have TS. Join the TAA in an upcoming sibling support forum where you can learn how your role as a member of your sibling’s care team can lead to more support and advocacy on behalf of your sibling.

“Words matter,” but taking action in addition to using your voice matters more in the world we live in today. Please support our efforts to combat the ignorance that exists around Tourette Syndrome and those who live with it. With the holidays quickly approaching, use #GivingTuesday as an opportunity to share our messages and raise funds to support the TS and Tic Disorder community. Take advantage of the many resources, events or support networks we have available to energize your awareness efforts. We are in this together.

Gratefully,