By Rachel Ezekiel-Fishbein and Adam Fishbein
Jesse Green’s review in the July 9 issue of The New York Times of The Cake, the delicious play I enjoyed in the Berkshires, derailed when Green carelessly referenced a character as having “musical-theater Tourette’s.” (For future reference, it’s Tourette or Tourette syndrome, no “s” and no apostrophe.)
Mass media and the entertainment industry habitually misuse Tourette syndrome as a punchline to identify an individual’s lack of filter. This is no surprise, as Tourette is often misunderstood even by doctors and educators, the people families most need guidance and support from.
For an individual with Tourette, suppressing a tic is like you or me trying to suppress a sneeze over spilled pepper. I dare you to try.
Adam is one of the 1 percent of individuals in the United States with this neurological disability, including its co-morbidities and the significant manifestations beyond motor and vocal tics. His tics tend to be mild and disappear when he is fully engaged in the activities he cares most about. But when he’s nervous, watch out. The night before he left for college, he was ticcing the shrill, startling sound of a siren for more than 30 minutes. Despite what you see on TV, he doesn’t have the cursing tic, known as coprolalia. (He does curse; what 20-year-old young man doesn’t?)
Adam’s co-morbidities are often worse than his tics. Most frustrating to him is the way his verbal output can’t keep up with his quick and clever brain, making his speech halted and slow, and leaving others impatient, which can lead to constant interrupting. Most scary were the Tourette R.A.G.Es. (Repeated Anger Generated Episodes) that came on during adolescence, causing him to turn scary and angry in a heartbeat and then crumple to the floor in tears of anxiety.
Ignorance about Tourette is rampant. During a Tourette Association of America conference, a woman walked up to a ticcing Adam and yelled, “Shut the f— up!” The lovely woman then turned and walked back into her own conference across the hall. She was a teacher, attending a national education conference.
I have watched with awe as Adam overcame victimhood and shared his story through the media, in classrooms and on Capitol Hill to “speak out for those who can’t speak for themselves.” These individuals are often bullied, left out and discriminated against, and deserve far better than Green’s ignorant characterization, which only further stigmatizes them.
We know how they feel, because we’ve walked in their shoes. Before we moved Adam to a school for children who learn differently, we regularly fielded calls from his school’s principal. What should she do, she implored, when other parents called because they didn’t want their child in Adam’s class? Our answer was always the same: Educate those ignorant parents and help them raise kinder, more compassionate children. (Oh, and please stop calling us, because we can only bear to hear how ostracized our son is so many times.)
I enrolled Adam in yoga as a child, hoping to help him feel more control over his wayward body. Another mother complained to the studio owner that Adam’s tics distracted her child from their practice. I’ll never forget how the yoga teacher responded; she suggested to the mother that learning to accept Adam and his tics was the best yoga she could provide her children. She then told the mom she was welcome to pull her children from the class, because Adam was staying.
It’s hard to imagine the media so callously using another disability as the butt of their jokes. Seriously, would someone say a character has “musical theater autism” or “musical theater cerebral palsy”?
I wish I could figure out why decency disappears when the subject matter is Tourette. I challenge Jesse Green and all of these others to get to know my son and any one of the other hundreds of thousands very real people with Tourette in this country before they idly use their disability to entertain.
Rachel Ezekiel-Fishbein is a PR consultant with a specialty in nonprofits, health, education and Jewish organizations. She also teaches communications and writing at Temple University. Adam Fishbein is a politics, policy and law honors scholar at American University and is vice president of the Pennsylvania Tourette Syndrome Association. This article originally appeared in The Jewish Week.