As a teenager, Pamela Rae Schuller felt like having Tourette syndrome (colloquially known as Tourette’s) made her a waste of space.
As an adult and professional stand-up comedian, she loves her disability.
“Tourette’s can be hard, and frustrating and even painful. It can also add incredible things to my life, if I am brave enough to allow it,” she said.
She spoke about her journey to self-love through humor during her talk “What Makes Me Tic: Comedy, Disability, and the Inclusive Community.” Jewish Family and Children’s Service of Greater Philadelphia and RespectAbility hosted the event in honor of Jewish Disability Acceptance, Awareness and Inclusion Month and Jewish Disability Advocacy Month.
“Every February, we see our goal is to bring awareness about disabilities and the importance of advocacy for disability rights,” said Lisa Ney, director of programs and services for persons living with disabilities at JFCS. “And this program is in honor of the culmination of a month-long programming that we’ve had towards this goal.”
Schuller explained that Tourette is a neurological disorder that causes her to experience tics, or movements and noises she can’t control. These can include moving her fingers and toes, winking uncontrollably, tensing her stomach muscles and barking.
“I like to explain Tourette’s as like a fence in your brain. Well, in my fence, there is a tiny piece missing. So signals are seeping through that I didn’t mean to send,” she said.
She said she had the worst diagnosed case of Tourette in the country as a teenager. She often lost control over her body and injured herself, whether through rupturing her own appendix or throwing her head back so hard she broke her neck.
The physical injuries were not as painful as the emotional toll of exclusion. Peers and educators treated her as if she was nothing but a disturbance, and those who did include her seemed to consider it a charitable act. She spent much of her youth feeling like she was a burden on her community.
Moments that made her feel included and supported helped change her perspective. There was the time her peers walked out with her when a religious school teacher at her synagogue told her she was being disruptive and asked her to leave.
There was also the math teacher who, instead of kicking her out of class when she started making noises, told her she sounded like a metronome and asked if she would like to write a song about math.
She got excited about the idea, as did the rest of the class, and they ended up writing and recording a whole CD together with her tics included as background accompaniment.
“And in that moment, this idea of inclusion shifted,” she said. “It stopped feeling like what people couldn’t do because I was there and started feeling like what people got to do because I was there.”
Taking improv comedy classes in high school also led to a breakthrough. The concept of “Yes, and,” or the rule that improvisational actors cannot contradict each other’s reality, helped her discover her sense of humor and love for performance without having her Tourette constantly scrutinized.
“When I would join the scene, flailing or barking or making noises, they ‘Yes, and-ed’ me,” she said. “I was getting laughs, and not because of Tourette’s, but because people were starting to see these other parts of me.”
Comedy has helped her recognize the silliness of prejudice, like when an eyebrow waxer berated her for not trying hard enough to control her body right before audibly farting.
In addition to her career as a comedian, Schuller has a master’s degree in child advocacy and policy and launched an initiative for Jewish teens called Here.Now, which promotes mental health, wellness and resilience through creativity.
She said it was important for people to move past “tolerance,” a word that sounds like nails on a chalkboard to her, and embrace full inclusion.
“Nobody wants to just be tolerated,” she said. “Every single person has value, and every single person has struggles and challenges, and we should be celebrating what each person brings to our community.”