(A note from the GN Editors: Every day, people around you are doing incredible things: transforming difficult situations into educational ones, and from adversity, creating inspiration. We’re pleased and honored to present this piece by inclusion advocate Pamela Rae Schuller – whose TED-style ELI Talk is embedded below – to tell you more about her experience growing up with Tourette Syndrome, and about how teachers were finally able to help her connect with things about herself and about life that she truly loved. As it happens, February is also Jewish Disabilities Awareness and Inclusion Month, and there’s a hashtag you can follow if you’re so inclined – #JDAIM. And check out the Grok With Us questions that follow the video embed to talk about your experiences with inclusion and disabilities awareness.)
In 9th grade, I was at boarding school, towel drying my hair in the girls’ bathroom when a fellow student approached me with a “compliment.” “If I, or anybody else I know had your life, we would probably be curled up in a cave somewhere slitting our wrists.” I knew enough about social niceties to know that when somebody compliments your ability to not kill yourself, you should say “thank you.” So I did.
At the time, I had been diagnosed with the worst-known case of Tourette Syndrome – a neurological disorder characterized by involuntary movements and noises (tics) – in America. Teams of doctors at top hospitals were calling each other to figure out the puzzle that was my brain, and they were stumped. I had been kicked out of baseball games, synagogues, restaurants – everywhere you can get kicked out of – because of the disruptive nature of Tourette’s. It became almost a game to see how long I could last in a location while barking and flailing before someone asked me to leave. By the end of 8th grade, I had tried every medication, neurology trial program, and voodoo doctor to ease the symptoms of Tourette’s, to no avail.
Public school had no idea what to do with me. My body looked like a fish out of water as I snapped my neck back, swung my arms, flailed uncontrollably, and made barking noises. I tested into advanced classes, but because my Tourette’s was so disruptive, the school attempted to put me into the special education program, where I would spend my days learning the ABCs. I was smart but trapped in a body that I couldn’t control, so my parents and I met with the head of the special ed department. I will never forget her words: “Kids with disabilities,” she said, “kids like Pam, don’t get A’s or B’s, don’t get into college, and don’t get invited to hang out at the mall. If you lower your expectations now, it will be easier in the future.”
By the time I arrived at boarding school in 9th grade, I had come to terms with the fact that I had a disability. The message had been received: disability = nobody, less than, incomplete, lacking. I had come to terms with that, too. My brain controlled my body, and I couldn’t control my brain. I hated all of it, and by default, hated myself. I was an angry, snarky, depressed teen. They had me writing apology notes to anybody I had wronged, be it fellow students, the headmaster, or myself. I spent days at a time living in detention and cleaning parts of the school to make up for my behavior and emotional (non-Tourette’s related) outbursts.
One day in detention, the teacher decided to try something new. He wrote, “Things Pam loves about herself” on a sheet of paper and told me to make a list. As I sat there, I couldn’t come up with a single thing. Not one. I remember seeing the fear in his face when he realized that I wasn’t just being a rebellious teenager, but that I truly had nothing to write on that sheet of paper. As a result, the school began focusing on treating the emotional side of Tourette’s – they switched their focus to helping me find something about myself that I love.
I tried play-writing, recycled art, theater, slam poetry, and song recording. They were all arts that I enjoyed but I wasn’t looking for a hobby, I was looking for a lifeboat, something that in the midst of feeling worthless I could grasp onto.
And then I found improv, a form of live theater where the plot, characters, and dialogue are created in the moment. When, as a school, we went to an improv workshop hosted by the local theater, I remember thinking “in theater, you get on stage to play somebody else, but in improv and stand-up, you get on stage to be yourself.” When doing improv and comedy, it was okay if I couldn’t control my body – my humor and wit were what mattered. That was a transformative realization.
In time, I went back to that sheet of paper, “Things Pam loves about herself,” and wrote “sense of humor” on it. The school framed it and put it on my wall. Improv and stand-up gave me the tools to respond instinctively and in the moment to questions, stares, and even to people laughing at me. Over time, comedy became a way for me to educate my community as an inclusion advocate, and slowly opened up my world as I started performing stand-up.
As an inclusion advocate, my role changes constantly. While not everybody has a disability or a family member with a disability, the feeling of being on the periphery is universal. With that in mind, I present about loving what makes you unique, even if it at times, makes life challenging. Sometimes I help communities evaluate and improve their inclusion practices for those with special needs, I have also worked one-on-one with families as a consultant, other times, I teach concrete ways to be more inclusive for anybody who may feel like he or she is on the periphery- not just because of disabilities.
Tourette’s has taught me a lot about myself that I probably wouldn’t have learned otherwise. I am witty, funny, strong, and resilient. My comedy community does not think of me as “Tourette’s Pam,” they think of me as Pam, a fellow comedian, who got lucky in the genetics department. I literally have a never-ending amount of material at my disposal.
People still “compliment” me, saying things like, “It is amazing how much you have done despite having a disability.” I correct them. I am not successful despite having a disability. I am successful because I have learned to own what makes me unique. Honestly, some days I am not entirely sure that I am successful – I am often pantsless in my apartment, I get lost on the subway daily, and I am never wearing weather-appropriate clothing – but none of those aspects of my life have anything to do with having Tourette’s. Jokes aside, I worked my butt off to get where I am today, and I put constant effort into remembering to be kind to myself and to laugh as much as possible. I will never “overcome” Tourette’s, and it will be a part of me every day for the rest of my life. I have embraced that, learned to appreciate what it has taught me, and feel honored to have the ability to laugh at the world from a different point of view.
Pamela Rae Schuller is a New York City-based, internationally-known inclusion advocate and stand-up comedian, probably because she sees the world from a different point of view: one where eye-level is four-foot-seven and barking without provocation is a completely normal and entertaining part of her day. Learn more about Pamela’s work at: www.StandUpInclusion.com, And to learn more about Pamela’s Jewish journey with Tourette’s, watch this ELI Talk.
Grok With Us:
- Do you know anyone who is struggling with a disability? What do you do to support friends and family with disabilities?
- What efforts have you made to be more inclusive in your community?