Embracing My Jewish and Disability Identities

It’s strange to think that right now, I’m working in a field that only a few short years ago, I had no idea existed. It gets even stranger when people send me articles or tag me in posts on Facebook related to it, saying I’m “the first person who came to mind.”

Before coming to school at American University (AU) in Washington, D.C., I had never heard of Jewish Disability Advocacy, Awareness and Inclusion Month (JDAIM), or even realized there was such a strong community of Jews with disabilities. It was not until late in 2016, when the former engagement director of AU’s Hillel sent me an invitation to the upcoming Jewish Disability Advocacy Day (JDAD), that I became aware of this community.

I absolutely was interested — and jumped in headfirst.

While growing up, I felt strongly about my identity as a Jew, but I never quite embraced — or even had been clear on — my identity as a disabled person. I was born with a rare genetic disorder: neurofibromatosis (NF) type 1. NF primarily causes tumors to grow anywhere on or in the body, but also can cause a variety of other complications. At age 2 1/2, I was diagnosed with an optic pathway glioma — a brain tumor — and began chemotherapy. From then until age 11, I was in and out of treatment, ultimately undergoing four rounds of chemo.

Still in elementary school, I never really talked about what was going on. Fortunately, I did have an understanding of my health issues, as my parents gave me a reasonably in-depth albeit age-appropriate explanation of everything; however, at school, to my peers and friends, it did not make sense to say much more than, “I’m sick, and the doctors at the hospital know how to take care of me best.”

It wasn’t until I was 12 that I really started to embrace my illness identity. That year, I went to a summer camp for people with my genetic disorder, meeting others “like me” for the first time, and was a featured interviewee in a promotional video for the camp. After having met and spoken with people who could relate to my experiences, it made me feel comfortable enough to start sharing my own more openly. For the first time, I felt OK telling people about my NF — what it meant and how it affected me.

Ten years later, I’ve written several pieces about my disabled identity, helped develop a curriculum for adolescents with chronic illnesses to learn about self-advocacy, and spoken with two cohorts of college-aged inclusion leaders about how to promote their initiatives on their campuses. I am working in a field 12-year-old Lily never could have imagined.

“I’ve been introduced to the Jewish perspective on disability — to how the ideas of tikkun olam and tzedakah play a role in creating a more accessible society.”

I’ve come a long way since that video; I’ve learned a lot more about disability advocacy and my identity. I’ve heard advocacy experts explain policy issues on a personal level and gained from them the knowledge and skills for how to promote change. I’ve been introduced to the Jewish perspective on disability — to how the ideas of tikkun olam and tzedakah play a role in creating a more accessible society.

I also have come to understand a lot more about myself and where I feel I stand in both the Jewish and disability communities, and how it is to be uniquely positioned at the crossroads of the two. Just as my disability has made me a more faithful person, my faith has made me a better disability advocate.

During the fall semester of my junior year at college, I had to deal with some pretty major health issues as a result of my condition. After having been so “OK” for so long, it was really difficult for me to adjust to these changes — especially given I was in school, away from my family and living independently. But I also was very fortunate as this time around: I had all my advocacy resources and experiences to draw from. I had friends I had met at conferences or through cohorts who could relate to being a college student having to deal with health issues. I could draw strength from my faith to lessen the challenges I was facing.

I used my advocacy skills to ask for the support I didn’t want to admit I needed but really did need from professors and administrators. I finally felt comfortable admitting I was sick and not going to “get better soon,” as so many very sweet but somewhat misinformed well-wishers hoped for me. It was easier this time around — and that experience taught me even more, so that while I hope I will not have to deal with anything else any time soon, it will be even easier in the future.

It is because of all this that doing this work matters so much to me. I want to help other Jews with disabilities — and nondisabled Jews and disabled non-Jews and those in neither group — to find the strength that the intersection of their identities can provide to them and all they care about. When we find the communities we fit into that care about the same things we do, we find strength and the place we belong.

Lily Coltoff is a Communications and Jewish Inclusion Fellow with RespectAbility’s National Leadership Program for spring 2020. She graduated from American University in December with a degree in communication studies and public health. She previously interned in the communications departments at Hillel International and the Department of Health in Washington, D.C.