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Tourette’s And Torah: An Interview With Comedian Pamela Schuller

Tourette’s And Torah: An Interview With Comedian Pamela Schuller

Gabrielle Kaplan-Mayer directs Jewish Learning Venture’s Whole Community Inclusion which fosters inclusion of people with disabilities through the Philadelphia Jewish community. She loves writing/editing for “The New Normal” and for WHYY’s newsworks. Her latest book The Little Gate Crasher is a memoir of her Great-Uncle Mace Bugen, a self-made millionaire and celebrity selfie-artist who was 43 inches tall and was chosen for this year’s Jewish Disability Awareness & Inclusion Month Book Selections. She’s recently shared an ELI Talk on Standing With Families Raising Kids With Disabilities and has released a journal designed for special needs parents.

Editor's Note: Last week, Pamela Schuller's ELI talk went viral. Schuller, a stand-up comedian and Jewish teen educator, was also once diagnosed with the most severe case of Tourette's in America. Her talk tells her story, brings in Jewish sources, and ultimately shares a call-to-action for the Jewish community around disability and inclusion. We are so delighted to talk with Pam further about her experiences!

NN: Pam–you are so smart, funny and articulate! I am so happy with the success of your video. What's it been like for you with the video getting out there so widely?

Pam: Thank you so much! The past few days have been incredible. I am overjoyed at how everyone has embraced me and connected with my story. This is a message that I have been talking about for quite some time. It is so important to me and I have wanted to yell it from the top of a mountain. I am so lucky that ELI Talks gave me this opportunity to share my feelings on inclusion, specifically within the Jewish community. I also feel incredibly thankful that the Union for Reform Judaism and NFTY (NFTY is the Reform Jewish Youth Movement) have been so supportive of my work with inclusion. In fact, at the URJ, I recently stepped into the role of Inclusion Specialist for all of our URJ Youth Programs, as they too see the value of putting a focus on inclusion.

I am hopeful that my video will have a lasting impact, and it is already starting conversations all over the world about how we talk and think about inclusion.

NN: Was your sense of humor always strong? Can you describe how you got started and developed yourself as a stand-up performer? Has Tourette's impacted you as a performer?

Pam: I think I was always funny, but struggled so much as an adolescent that somewhere along the way, I lost my humor. I look back at my journals from when I was a kid and even from the age of 8 or 9, I was not journaling, I was writing jokes. At boarding school, I started doing slam poetry and my English teacher pointed out to me how funny my poetry was. From there, I got more into comedy and specifically performing stand-up.

I went to undergrad at Knox College and there they let me open for every comedian who came to our school to perform. Lynne Koplitz and Pete Holmes from Comedy Central took me out to dinner after I opened for each of them, and they gave me great feedback and helped me get started in the comedy world.

Tourette’s for sure plays a role in my comedy. Growing up with Tourette’s was not easy. The more I became okay with myself and my differences, the more I was able to laugh about the awkward moments from Tourette’s. Embracing those moments really helped me develop and shape my humor. Having Tourette’s has taught me to live in the moment and to not anticipate the way people may respond to my Tourette’s, or else I would have constant anxiety. The same goes for when I do stand-up. I also think having Tourette’s allows me to see the world a little bit differently and probably has even wired my brain differently – in a fun way.

NN: You describe the Jewish community not knowing how to support you. What do you think your congregation could have done differently?

Pam: This is a tough question and I am always very careful not to place blame on the congregation. They really did care for my family and me, and I won’t deny that I was overwhelmingly disruptive. So instead, I look at what all congregations and communities can do today and moving forward. I think the biggest two things are education and empowerment. First, we must educate not necessarily about diagnosis, but on ways to be creative in the classroom, sanctuary, or even in less structured programing, to make sure that we are not only creating a safe space, but a space that grows with every person. After education, empowering the community comes next. Creating a successful, inclusive community should not belong to a single individual. The rabbi or education director can’t do it all. The entire community must see inclusion as a priority and then they will work to ensure that every person feels valued and accepted.

NN: You describe the awesome Jewish camp that supported you. Were you scared/hesitant to go to the camp? How did you and your family know it would be a supportive space?

Pam: I began going to Jewish camp, Goldman Union Camp Institute (GUCI), when I was in the 3rd grade and my Tourette’s got worse around the time I was in 5th grade. Even though everyone in the camp community already knew me, I still chose not to go back to camp that summer because I was hesitant to be seen in public. It took a big leap of faith for me to go back the next summer. My mom did her best to prepare the camp and I created a packet of information on Tourette’s. I also created a little speech to explain Tourette’s to my peers in an age-appropriate way and included some humor. It was the first place that I started really advocating for myself and figuring out what my style of self-advocacy would look like.

NN: I love the way that you describe Moses and God's relationship. When did you begin reading and studying Jewish texts and looking at them with a lens of inclusion?

Pam: While in graduate school, inclusion and teaching kids self-advocacy skills became a main focus of mine and the topic of my thesis. In my research I found that there are TONS of resources online for parents to go into schools and explain their child’s disability, but almost NO resources for kids to explain to their peers. That stuck with me. So, when it came time to choose an internship, I asked the URJ if they would allow me to spend my internship hours creating inclusion resources for NFTY regional staff. While creating the resources, I spent a great deal of time researching texts and quotes, reading blogs, and asking questions to rabbis, educators, and youth professionals. I thought a lot about whether or not I should curse or celebrate the moment in the Torah where God tells Moses that Aaron can speak for him if he needs help. After thinking about it, and talking it over with rabbis, I decided that even if the solution may not have been perfect, it was God getting creative to support Moses, and that is something to celebrate.

The more I go into communities to speak about inclusion, the more my thoughts and views on texts have been shaped. I have learned a lot from the communities that I have worked with!

NN: Dreams for our Community and inclusion for five ten and fifty years ahead:

Pam: My hope is that we start embracing differences (not only Tourette’s!) and are more creative about how we welcome people into our communities. No parent or child will ever again feel like they do not have a place in a Jewish community.

I often hear parents complain that their child’s camp or religious school experience was negatively impacted because a child with special needs was in their class or cabin. This could not be more frustrating for me, given my personal experiences and my work in the field of Jewish Education. So, my dream is that every parent and child is able to see how wonderful it can be to get to know someone who is different from them. That instead, the parent thinks, “How amazing that my child got to meet so many different types of kids!”, or “How amazing that the counselors created a community of kids who all have different passions and goals,” and that they will be delighted that their child will be able to embrace those who are different. I hope that 50 years from now the term “inclusion” will be a thing of the past because we will be too busy living in an incredible world where every person is valued, not despite their differences, but because of their differences.

Want more Pam? Visit her website and follow her on twitter.

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