In My Own Words: Thinking about disability during Jewish Disability Month

By Rabbi Rachel Esserman

I remember the first time I accepted the label “disabled.” When I had what I now think of as my final drop in hearing, I continued to search for a medical solution. What I did not yet realize – or maybe was just unwilling to admit – was that I had a permanent disability – one for which there was no known medical cure. My acceptance occurred after a counselor at VESID (AKA the Office of Vocational and Educational Services for Individuals with Disabilities) suggested I apply for Social Security Disability Insurance. Several people immediately recommended lawyers I could contact when my application was turned down. Surprise! Rather than a letter rejecting my request, a check with my first SSDI payment arrived in the mail. My brain finally said, “Wow, you must really have a disability.” 

I’d been thinking about this since I read Julia Watts Belser’s “Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole” and reviewed it for my annual Temple Concord Sisterhood book review. Belser is not the first disability activist I’ve read and not the first with whom I’ve had some disagreement. I understand her rejection of medical solutions: she wants the world to offer complete acceptance of those with disabilities and to focus on making this world safer and easier for them. To me, that’s fine as long as there are no medical solutions. However, if there was a safe way to cure my hearing problem, I would have taken it. In fact, I tried medical solutions until I faced one that I thought was too dangerous. 

But then she offered a story about a deaf boy as an example. Someone tells him that he will be able to hear in heaven. The boy replies that God will be able to sign. It’s a wonderful story and I hate it. If there is a heaven, I want to be able to hear. I know what I’m missing and I want it back. Sure, I’ve learned to live without normal hearing, but that’s because I was forced to in order to find work and support myself.

My mother, on the other hand, would have spent her life taking me to doctor’s offices to find a cure for my hearing loss. But after I refused to take a medicine I felt was dangerous, I decided to focus on learning to accept my limitations and move on because this is the only life I’m going to get. That meant not spending time trying for impossible results and instead focusing on all the good things I did have in my life. The results have been mixed. I laughed at some of the misunderstandings between what was said and what I heard. (Some of them have been really funny.) I cried when realizing there was something I would have loved to have done, but didn’t have enough hearing. Attending would have been a nightmare and I was trying desperately to avoid situations that would have left me feeling depressed.

Life has been easier since the cochlear implant, but I still don’t have normal hearing. I never will. I’ve learned to live with that, as I once learned to live with the various health problems that brought me back to Endwell after graduating from college. I had also never planned to return to this area after rabbinical school, but I am a prime example of the Yiddish saying, man plans and God laughs. Plan B? Ha! I think I’m on plan H, I or J. There have been too many to keep count. 

But the idea has always been to follow the saying on a poster given to me by a friend when I returned home after college: it said, “Bloom where you are planted.” The same friend recently gave me a wonderful compliment. Her daughter has health problems and my friend reminds me of my mother in her determination to help her daughter. (Yes, she is seeking a medical solution, something I mentioned before that disability activists don’t always see as necessary.) In a recent e-mail, she wrote that her daughter views me as a role model proving that you can still have a good life, even if you have a disability. I was incredibly touched because most days I don’t feel like a role model. It’s just me taking one step at a time, making things up as I go along. But that’s what life is like when you have a disability: you never know what you might have to deal with. But, sometimes, I think many of us are just taking life one step at a time and making things up as we go along. 

In some ways, my disability affects almost every decision I make. Is that good or bad? I don’t think there is a good or bad choice, only a way to live the best life we can with what we are given. Yes, we should make life as easy as possible for those with disabilities – from ramps to elevators to microphones, etc. – but, ultimately the person with the disability has to determine their own life focus. Do I rail against the world because I have a disability? Do I seek medical solutions? If those don’t work, do I accept that and move on? One of the best gifts we can give ourselves is the freedom to choose. There is no one right answer for everyone.