Guila with her dad at her wedding, 15 years ago. Photo courtesy of Guila Franklin Siegel
Guila Franklin Siegel is a guest blogger for Matan. An attorney by training, she worked for over a decade in the areas of Jewish social change and Jewish philanthropy. She lives in the Washington D.C. area.
As the only child of my two parents with cerebral palsy, I have always been moved by the push for greater inclusion for people with disabilities in Jewish education and Jewish life overall, but from somewhat of a distance. Many of the most passionate advocates in this arena are parents striving to nurture the Jewish identities of their own children with disabilities and obtain quality Jewish education for them. Those are shoes in which I have not walked. I have three typically developing sons, none of whom to this point have required any special accommodations or assistance with accessing Jewish education in our community.
Of greater note, perhaps, is that my parents have also never experienced a feeling of being marginalized in the Jewish community. On the contrary, the Jewish community has been the fulcrum of their lives and has been much more a source of strength, support and inspiration than even secular organizations devoted to serving the needs of people with disabilities and their families.
As my parents get on in years – they are now both 80 years old and increasingly infirm – I have begun recording their amazing life story, interviewing them for many hours and also speaking with other family members, childhood friends, and the like. Certainly there are few, if any, instances of people with cerebral palsy of their generation living independently, being gainfully employed, economically self-sufficient, and having a child.
When I showed my husband a first rough draft of what I had written based on those interviews, he commented, “Too much Jewish; not enough disability.” His observation made me take a step back and reflect on my parents’ lives, particularly my father’s, and my own upbringing. I asked my father, “Which is more important to your identity, being Jewish or being disabled?” “Both,” he responded. “I really couldn’t pick one over the other.” Somehow, his low-income immigrant parents living in the hard-scrabble neighborhood of Coney Island during the years of the Depression and World War II instilled in my father a deep sense of Jewish identity and belonging. I doubt they gave even a fraction of the thought and worry to their son’s Jewish “neshama” (soul) that parents of children with disabilities do today. Nor were they able to access the myriad services and educational technologies that exist today both within the Jewish and the secular world. Yet somehow, they managed to raise a child with a powerful, positive sense of his identity as a full-fledged member of the Jewish people, a gift that he passed on to me and now to his three grandsons.
What did my grandparents, their Rabbi, and their community organically understand that seems to elude so many American Jews today? I believe they grasped the inherent simplicity and purity of what it means to “be Jewish.” To this day when my father speaks of his Bar Mitzvah, his face beams with pride. I asked him how it was that a child with such severe physical disabilities, who could not use his hands at all, even to feed himself, who walked with a pronounced gait and spoke so slowly, became a Bar Mitzvah. How did it work?
“Well, when I was almost thirteen, my father went to meet with the Rabbi. He told the Rabbi that it was time for me to become a Bar Mitzvah. The Rabbi gave me lessons, I was called up to the Torah, I had an Aliyah, and I became a Bar Mitzvah.”
Sixty-seven years later, I have now begun to prepare for my own son’s Bar Mitzvah, which will take place in a little over a year. If only it were as simple as it was in Coney Island all those years ago! Today’s B’nai Mitzvah process is a multi-year circus-like process; there are numerous hoops to jump through, including synagogue membership, years of Hebrew School, private tutoring to learn to chant the haftarah (a rarified skill that the Reform movement is now beginning to question as a litmus test for becoming a Bar Mitzvah), preparing a grand speech, and on and on. It is the triumph of process over substance, an enormous problem that our community is spending millions of dollars annually trying to solve. We have made entry to, and belonging in, the Jewish community such a bureaucratized affair, with so many barriers based on educational and social skill and ability, that it is no wonder so many children with disabilities and their parents find the entire experience inaccessible, inflexible, and off-putting.
I am sorry to say that if my father were 13 years old today, the chances of him becoming a Bar Mitzvah would be slimmer than they were in 1945, except perhaps at a Chabad congregation or a synagogue where the leadership was innately sensitive to, and understanding of, different needs. And that is a travesty. My grandparents and their Rabbi, with far less formal education and sophistication than today’s parents and clergy, acted on a purity of heart and mind that allowed them to say, “Shep is Jewish, he is thirteen and he needs to be called up to the Torah. Period.” No more, and certainly no less.
It would have been heresy in my grandfather’s mind for his son to not become a Bar Mitzvah. It just wasn’t done. And when he sought to ensure that his son experienced this critical rite of passage, his Rabbi demonstrated a pragmatic, compassionate approach focused on what was achievable, rather than erecting insurmountable obstacles. In that sense, my father was made to understand that he was no different than any other Jewish child (well, any other boy, but that’s another story for another day!). His Jewish identity was affirmed in such a positive, powerful and equal way that it became the guidepost for his life.
I asked my father if his parents threw a party for him on the day of his Bar Mitzvah. “Well, they were very poor, but I’m sure they must have had my aunts, uncles and cousins over for lunch or something like that. I really don’t remember anything about that. What I remember is being on the bimah, which of course was the important part. It was one of the proudest moments of my life.”
Words to live by.