by Bernie Goldstein
Bernie and his daughter
Editor’s Note: February is Jewish Disability Awareness, Acceptance & Inclusion Month. We are delighted to share this important parent perspective which originally appeared here.
August 2017: my family and I are driving up to Camp Ramah in the Poconos, for our first Tikvah Family Camp, a program for campers with special needs and their families. As we come to the top of road approaching camp, we’re greeted by a giant metal sign with a simple, yet powerful message, in Hebrew and English–bruchim habayim, welcome home.
For my daughter Eliana, a young person with an intellectual disability and generalized anxiety – bruchim habayim was not a message she got from the Jewish community. And even the times it was extended, it was definitely not delivered in a way that she could receive it.
Think about it from her perspective:
Jews read, write and speak a language that uses different characters that go in the opposite direction – she struggles with her first language;
Judaism demands verbal expression of blessings and prayers, she has profound language delays;
Jews travel in packs – 2’s for learning, 3’s for birkat- grace after meals, 10 for praying often with a noisy kiddish afterwards – social situations are fraught for her.
Synagogue services–pick your challenge: long periods of focusing & sitting for example the requirement to hear every word of the Megillah on Purim. Or the loud noisy graggers that sharply and surprisingly punctuate the quiet….
For many families it can be a struggle to get their child to embrace Judaism, for me it felt like a struggle to get Judaism to embrace my child.
When Eliana saw that sign for the first time, she was on the verge of leaving Hebrew School and not coming back. Her Bat mitzvah, while chronologically only a few years a way, seemed like a 100 years away. This was after a decade of efforts, Jewish nursery school, Jewish kids programs, Hebrew school, synagogue, Eliana still didn’t have a real place in the Jewish community, didn’t have Jewish friends, she wasn’t engaged, welcomed or accepted. And so we felt ourselves withdrawing too. We were lost and wandering in the desert.
That summer was the beginning of our journey back. Tikvah family camp immediately unlocked new engagement and joy in Eliana. It also opened a pathway to a Jewish camping experiences as part of an integrated community of special needs and typically developing campers at Ramah Poconos & Ramah Day Camp in Nyack. For my wife and I, it introduced us to a community of other parents who were on a similar journey–Jews from all denominations, united by a similar sense of wandering.
We tried again following that first summer … candid discussions with our Rabbi, trying to bring elements of inclusion to the children’s program at our synagogue, pulling Eliana out of Hebrew school, finding tutors, Chabad’s Friendship Circle (where they use a speed reading rabbi to address that Megillah reading challenge I mentioned earlier), even joining a second synagogue, because, you know, Jews! In all seriousness, this synagogue has a model where there is no central budget for inclusion because every vertical in the synagogue is responsible for inclusion.
Then this past January, it was Eliana’s turn…One Saturday night as I drove away from synagogue here in Riverdale, Eliana abruptly shouted “stop the car!” She promptly rolled down her window and shouted “Rabbi Katz I want to have a bat mitzvah!” Now that bat mitzvah is only 4 months away, as she works with our Cantor and Rabbi, toward her goal. She’s receiving that bruchim habayim on her own terms.
Hearing my story, you might think inclusion has always been central to my Jewish journey…but I must admit it was not, the funny thing I realized about inclusion is that I didn’t really focus on it, don’t feel the need for it in a visceral way, until someone I love was impacted.
Most of my life there been a giant neon sign hanging on my Jewish experience that said bruchim habayim and unlike Eliana this was a very warm welcome. I’m an able-bodied, straight, white man – that’s an all access pass. I’m the son of a rabbi, who was educated in day schools, yeshivot in Israel and the Jewish theological seminary, so I had the tools to shape text, prayers, theology, and experience to my needs. I felt at home in a wide spectrum of communities & always saw myself on the inside, blind to what I was missing.
Until that moment when I wasn’t. Until the moment when the same Judaism that had felt like home for so long, suddenly felt like a dry, barren, uninviting desert.
This past April, I rode my bike through 246 miles of actual desert, for the Ramah Israel Bike Ride, raising money for National Tikvah programs. I rode alongside an amazing community of participants, including a minyan of participants from our synagogue here in Riverdale.
The desert tested me, physically on hills that felt like small mountains, and mentally as I raced down 800 meters of sharp steep switchback roads into the Ramon Crater, fighting my fear of heights with every glance over the short, insufficient guardrails.
I fought for every meter, well past the point where my mind and body wanted to quit. Something that had been my comfort zone, riding a bike, suddenly become the challenge of a lifetime. I longed for the sweetness of a small victory against the backdrop of many setbacks. It let me ride for a bit in Eliana’s shoes, brought together our long journey of wandering, but perhaps now with a glimpse of the destination.
I saw how far inclusion can go in this powerful community of riders, with different background and experience that made space for everyone. the group evolved in real time as we learned who we were and how to insure everyone was engaged. Challenging ourselves to get everyone over their personal finish line. This made me realize that inclusion is not something you do for someone, but with someone. On equal terms, as a fellow member of the community, another person created in God’s image.
Are we brave enough to do the deep work of inclusion?
To discard the tired notion of big hearted insiders making space but setting the terms for outsiders to come in. We must embrace a model of community that challenges all of us to evolve and grow, making our community, more vibrant and more sustainable than before.
There’s a rabbinic teaching that states: KOL YISRAEL YESH LA-HEM CHELEK L’OLAM HA’BAH, every Jewish person has a stake in the world to come.
Here’s my challenge to all of you: can we build a community here, in this world, where every Jewish person feels like they have a chelek – an equal stake as well?
Bernie Goldstein is an Executive Director at J.P. Morgan Chase. He lives in New York with his wife and two children. He is actively involved with Camp Ramah and has a passion for cooking and biking.