I have been chronically ill since day one.
At 18 months, I underwent major surgery for a life-threatening abnormality in my renal system. The surgery saved my life, but consequently left me a medical mess. Over the years, I became accustomed to spending more time in doctors’ offices than in school classrooms.
College was no different.
A few months after I enrolled at the University of Central Florida in fall 2016, I was rushed to the emergency room. I spent my first semester as a UCF Knight in the hospital, undergoing my eighth surgery for congenital anomalies.
I was missing out on life because of my chronic illness. Again.
When I returned to campus six months later, I saw Central Florida Hillel professionals and students tabling outside of our student union. Becoming active in Hillel would be a great way to make friends. I decided to give it a try.
My involvement with Hillel was how I met Katherine Quam, who told me about the Ruderman Inclusion Ambassadorship, a specialized Hillel engagement internship. Supported by the Ruderman Family Foundation, ambassadors from campuses across the nation educate students about disability inclusion, make campuses more accessible and welcome students with disabilities into Jewish life.
At first, I wasn’t sure I was the right fit. I was always taught to keep my chronic illness to myself. But I wanted to help other college students who were struggling. Students who are chronically ill and have disabilities are often left out of conversations about inclusion. Our community needed a voice.
Encouraged by Katherine, I decided to do it.
I was first introduced to the connection between disability inclusion and Judaism at Hillel Engagement Institute in St. Louis.
I learned about Moses, who was a powerful leader with a speech impediment. His brother Aaron spoke for him. That simple accommodation made Moses unstoppable.
I learned how to be open and accessible, as well as educators of inclusion.
Most important, I learned how to speak up for myself.
Jewish scripture taught me that the Jewish community is willing and has always been willing to accommodate me. And with that newfound knowledge, I learned how to accept myself.
I returned to campus with the tools to make Hillel more accessible and inclusive. I helped organize a training for Hillel staff and its executive board on spoon theory, a metaphor that uses “spoons” as a unit of energy to describe how chronically ill people have a limited amount of energy each day.
Spoon theory helps me explain the hurdles of chronic illness and disability in a simplistic, educational way. Most healthy people have unlimited “spoons” to get through their typical day, but those living with chronic illness and disabilities have a limited number of “spoons” each day.
Our Hillel staff and board learned that energy costs are different for students with disabilities. Being aware of these energy costs increased their understanding of what a chronically ill or disabled person goes through just to get to Shabbat services after a long week or why they need to cancel plans.
We also discussed the importance of our Hillel serving students with a wide range of dietary needs. Making accommodations for those with celiac disease or someone who is vegan helps open the Hillel doors to everyone.
On Yom Kippur, I spoke to my fellow students about how there’s a blessing for people like me who are unable to fast. Doing so opened people’s eyes to the connection between Judaism and accessibility and reminded them to refrain from judging others for what they’re unable to do.
I spearheaded Hillel Inclusion Week, a week-long program educating others about inclusion and accessibility. Our events included a screening of the documentary Diffability Hollywood, a teacher lunch and learn about disability accommodations and an inclusive Shabbat.
Today, I’m continuing my advocacy work as I pursue my master’s degree in political communication at American University.
I co-created Access AU, a group for students with disabilities to socialize and advocate. Together, we’ve ensured that renovated campus buildings will be accessible, going above and beyond the standards outlined in the Americans with Disabilities Act. Our auditorium will have automatic buttons, and our science labs will have equipment and lab tables at accessible heights for all.
I drew upon my work with Hillel Inclusion Week when leading a session at the American University Symposium on Disability, a daylong event on disability and higher education.
In the midst of all this, I recently underwent my ninth surgery. I’m in the process of scheduling my 10th surgery. I know it won’t be my last, and that’s OK.
My connection to Judaism and my supportive Jewish community has taught me to accept my chronic illness, advocate for myself and others and use my training to create more accessible and inclusive communities.