Blog  From a Lonely Existence to Inclusive Communities: Growing up With a Disability in the Jewish Community

From a Lonely Existence to Inclusive Communities: Growing up With a Disability in the Jewish Community

By Ione Heigham | NFTY-NE NFTY Representative, NFTY-MVP Elect, Inclusion Task Force Member

My mother tells me that she used to get a call from my elementary school nurse everyday of first grade. Each time I would claim to have terrible stomach pain or my arm hurt or I would think I had a cold. However my earliest memory regarding school was in second grade in my kitchen. There were sheets of letters in front of me, I had an eyepatch covering one eye and my mother sat at the table with an irritated expression. Tears piled up in the eye patch and when I finally tore it off my face water spilled down my cheek. I could not understand why I had to be sitting inside for an hour everyday as my best friends were playing in the street right outside the window. Patiently she tried to explain to me how I was a bit different from my friends, what came naturally to them I would have to train myself to do. Yet, her words would hardly soothe me and I would spit back to her, “how can I be smart if I can’t even read” and this question would infest my mind for the next few years.

Each night I would clench my elephant stuffed animal tight to my chest and wonder whether it was worse to be illiterate forever or to suffer through the tortuous daily therapy; let it be noted that I was quite a dramatic child. Finally, after an hour of eye therapy per day, a special

English tutor, and special reading classes in school, I could read, this was third grade. Most teachers just figured that I had dyslexia and threw me in low level English classes. Although well intentioned, their misguided help hardly helped my confidence as I would have to repeat “I do not have dyslexia, I have binocular non convergence” what seemed like every day. I felt so disconnected from language and thought that if I never had to write again I would be living the life.

By the fourth grade I was finally beginning to feel like I got a grip on English, and that’s when Hebrew entered the picture. I began Hebrew school late and had to catch up if I wanted to become a Bat Mitzvah in seventh grade. I hated learning the prayers and even to this day do not know the Hebrew alphabet.

At my first NFTY song session, I remember doing my typical flailing dance while my mouth stayed perfectly still. Many older kids came up to me and happily pointed to the Hebrew projected on the screen, assuring me that the words were on the screen if I did not know the songs. When I led my first service for NFTY Northeast, many friends questioned why I asked my dear friend, Maddi, to read Torah rather that taking the honor myself. Jokingly, I would reply, I did it to spare you all from hearing my tone deaf self sing. What else was I supposed to say? Even my close friends from Temple hardly knew about my struggle with language and reading. Once, as I read an article out loud in my Temple lobby, one close friend began to laugh, questioning why I read so slow. I burst into tears, partly because it was the end of a long day, and explained how I have a disability. Knowing that my friends comment was just well intentioned banter, I quickly assured him that I was not bothered by his remark. How is anyone to know about my disability if I did not tell them?

This past weekend I was given the opportunity to run for North American Board and spoke largely about how to make NFTY a more inclusive environment. Although being someone who has a disability gives me a unique perspective on inclusion, I withheld this information from the community. Perhaps my fear was formed from my deeply rooted belief, that my disability somehow affects my intelligence. As one of the most inclusive communities I am a part of, it still must be said that NFTY has a long way to go in terms on disability inclusion. Although I would have liked to finish this article with words of my own, I feel that this quote by Susan Hampshire perfectly summarizes what I would like to leave you with: “It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, your disappoint your parents, and worst of all you know that you are not just stupid”.