What I Learned Playing a Character with Tourette's — July 27th, 2026

In March, I was approached by a local theatre professional with a brand new request–– I was being asked to play a character with Tourette’s.

Well, a fake, fatal, exaggerated version of Tourette’s, but a version of Tourette’s.

The person who made this request of me had no idea that he had asked someone who actually had Tourette’s to play the role of Shirley Summers in “Disaster!”

“Disaster!” is a parody of 70s disaster movies, set on a floating casino where everything that can go wrong, does go wrong. My character is an homage to Shelley Winters’ character in The Poseidon Adventure. In that movie, her character, Belle Rosen, saves the day by showing off the skills she gained as a high school swim champion. In this musical (spoiler alert) my character saves the day using the skills she gained as a high school tap champion to tap out Morse code instructions to save two young people from drowning. Then, having triggered the ultimate Tourette’s storm, she dies dramatically. 

Playing this character was a big push for me. First of all, tics are often suggestive, so I was worried about giving myself this character's tics. While I was rehearsing the scenes where she tics, I would frequently trigger my own tics. This is because one of Shirley’s tics was winking uncontrollably, which some characters took to be a flirting overture, and one of my tics is uncontrollable blinking, which is really far less cute on me than it is on Shirley. Any time I blink a lot (like if my eyes are dry), my blinking tic gets a lot worse. The other tics, like her yelling swears, were not a concern for me to act out because I don’t have coprolalia. 

But more than being a push in terms of acting, taking this part really made me reflect on the state of Tourette’s representation. Tourette’s is almost universally treated as a punch line in pop culture. The only more serious depiction that will occasionally come out now and then tends to be in the form of a documentary or memoir or something like that, and even that is more the source of ableist rhetoric and jokes than it is something that stands on its own. 

Shirley is certainly no departure from the norm in Tourette’s representation. Her Tourette’s consists of pelvic thrust, winks, and inappropriate language yelled during otherwise life or death scenes. I had to think seriously about whether I was hurting the cause of Tourette’s representation by doing this role. Ultimately, I decided that the production would happen with or without me, and that if I could bring some authenticity to such a silly role and inform my cast mates and audience members about the reality of living with Tourette’s along the way, I would do it. 

Ultimately, while Shirley is definitely a source of humor in the script, she is also one of the heroes. She dies a goofy, yet noble, death saving others. Her death is probably the saddest one in the show–– her husband tearfully sings their song to her as she dies in his arms–— and the role itself is an homage to an actress whose career in the arts spanned seven decades. May I be so lucky as to have a career as long as that one. 

As I round out my last weekend in the role, as of writing this, I am grateful for the time I spent playing Shirley, and hopeful that the next time I play someone with Tourette’s, I play a more nuanced portrayal that doesn’t treat the condition as a laughing matter. 

Thank you for subscribing to the blog and for Facing Tourette’s with us.  With this post, we will be returning to a more regular blogging schedule.