We're Not Waiting - A Jewish Approach

This piece was published the The New York Jewish Week

As part of Jewish Disability Awareness and Inclusion month I’ve had the honor of curating an exhibit called We’re Not Waiting at the Miles Nadal JCC Gallery, featuring the work of award winning photographer Chorong Kim, that celebrates the lives people with Ehlers Danlos Syndrome (EDS) have carved out for ourselves.

When I was first approached about putting together an exhibit for this month, my mind immediately starting to whirl. Reconciling my Jewish identity with my Disabled identity has been an ongoing and complicated process.

So much of the Jewish culture I’ve experienced has involved the idea of healing. We wish each other a refuah shlemah, a full recovery, say a Mi Sheberach, praying for speedy and complete healing, and embedded into the fabric of community I grew up in was and is a well-oiled response to any sudden and temporary ailment. When my mom was admitted to the hospital, for two weeks our freezer was stuffed with every kind of casserole and lasagna imaginable that had been dropped off at our door.

All of these responses of care are beautiful, and have meant a lot to me at different points in my life. But what happens when 2 weeks pass and the casseroles run out? When I began to get acquainted with chronic illness and disability myself, I found that these traditions no longer comforted me. In fact, they started to do just the opposite.

I live with EDS — a genetic connective tissue disorder. My chronic illness and disability are a part of me and my every day life. By framing illness, pain and fatigue as something to be recovered from, I felt like my reality as a chronically ill, disabled person was being erased; like I was being put on hold, waiting for a magic cure to render me ‘whole’ again.

The Jewish culture that I was brought up in had a lot to say about how the community can engage with the sick, but a distinct lack of guidance on how the chronically ill can engage with community.

So, I took some space. I asked those close to me not to offer my name for a Mi Sheberach. I dug in to my own life, my work and my art, and connected with other people living with EDS, along with other chronic illness and disability communities.

I found a way forward for myself that not only accepted, but embraced my reality. And then I realized, that was a pretty Jewish thing to do. So much of the history of Judaism is defined by adaptation. We are a wandering people who have learned to survive through a legacy of constantly evolving circumstances.

For Jewish Disability Awareness and Inclusion Month, I wanted to show that side of chronic illness and disability. To celebrate people with EDS living our lives, in whatever way works for us. Together with Chorong Kim, I met with several people from the EDS community, who generously shared their stories with us, inviting us into their world. What we learned from them reinforced the name for the exhibit. Whether it’s watching a favorite Netflix show in bed, embroidering with braces on, connecting with the Disability community, or finding a way to write, work, research or do whatever it is we care about; we’re here, and we’re not waiting.