Slowly, the passengers tumbled out of the cramped SUV, tired from their long trip to the Pearlstone Center. Two people dressed in black* immediately ran out to greet them with warm hugs and carefully led them into the dining room. Sharon and Scott, from California; Steve, from D.C.; and Martin, from New York, had just arrived at the biennial Deafblind Shabbaton.
Inside, attendees who had arrived earlier reached out to say hi and express their warm welcome in tactile sign language**. It looked like a flurry of hands: hands touching hands, hands feeling the hand shapes that form letters and words, hands reaching out to read Brailled nametags, hands holding elbows for guidance, hands flying in excited discussion.
It was neither quiet nor noisy in the room. Rather, the steady hum of Deaf speech, expressive grunts, and laughter sounded just like what it was: 18 Deafblind adults gathered for a Shabbos experience. For them, it was a chance to walk through an open door, into the world of Judaism.
Being Deafblind means living with some degree of both hearing and vision loss, the permutations of which are multitudinous. The communication methods of the Deafblind community are as varied as the individuals themselves. Some people use their residual hearing if they are standing close by. Some people use sign language within close range. Some people speak. Some people use sign-supported speech. Some people use tactile sign language, in which they place their hands on top of those who are signing to feel the signs.
All Deafblind individuals folks require close attention in order to communicate, essentially preventing them from participating in Jewish lifecycle events, synagogue services, Jewish classes, and programs, unless they have a one-on-one interpreter. The costs of hiring interpreters, who are professionals and should not be asked to volunteer, can add up quickly.
Because this dual disability is uncommon – only one in 600 people live with both vision and hearing loss, and even fewer identify Jewish – the logistics involved in finding and funding the necessary manpower too often overshadows the value of including a person who yearns to partake of the Jewish community. The need for this Jewish neshama to be included becomes “too expensive” and “too hard to figure out.” As a result, Judaism frequently becomes something unknown to these individuals, hidden behind a closed door.
Sarah, of Maryland, a trained pastry chef who is Deafblind, led the group in cookie making, a satisfying tactile experience. With interpreters and SSPs (support service providers***) at their side, the participants followed Sarah’s instructions to cut out little gingerbread men and women and decorate them with sprinkles, licorice and chocolate chips. The theme of the weekend was “Building a Jewish Deafblind Community,” and Sarah, communicating in American Sign Language (ASL), told the attendees, “These cookies represent each unique Deafblind individual.” Then, instructing the participants to arrange the sugar cookies on the large baking pans as if they were holding hands, she concluded, “This represents our unique Jewish Deafblind community.” The grown men and women were smiling and taking pride in their creations. They found new friends to connect with as they molded their cookies together.
Later, after lighting candles, using long skewers for safety, people piled into the makeshift synagogue. As in a beginners minyan, the context of the prayers was explained before each segment: Mincha, Kabbalas Shabbos, and Maariv. The explanations were spoken by a hearing rabbi. To make sure everyone could follow, an interpreter stood in front of the room throughout the service. Watching the platform interpreter, individual interpreters imparted the message to the consumer he or she was helping. Steve, of D.C.; Jeff, of Illinois; Robert, from Washington; Mordy, from Israel; and Allen, from Illinois each received the explanation right in their own hands through tactile sign language. Sara Leah and Sarah from Maryland along with Shlomo and Yaara from Israel watched interpreters, who sat right in front of them, repeating everything clearly in spoken English or American Sign Language. Mark, from Arizona; Karen, from Canada; and Kit, from New Jersey, sat up front and listened to the speaker. Throughout the service, the interpreters guided their consumers when to sit, stand, or bow. A boy in front raised a red flag to help non-religious interpreters or those Deafblind participants with some vision to know when to say or sign amen. As Karen attested, “It was a powerful beginning to the Shabbaton.”
In addition to the Deafblind participants, 70 trained volunteers flocked to Pearlstone by car, plane, and rail from all over the country to assist with communication and guidance. It was they who made all the communication possible: from prayers to announcements to conversation about the weather. “It feels holy here,” expressed one non-Jewish certified Deaf interpreter (CDI) as she waited for her consumer to come out of the bathroom: “I am very impressed with the Jewish community and I want to come back in two years for the next Shabbaton!”
At the designated times, kiddush, hamotzi, and havdala were simultaneously recited in Hebrew by hearing rabbis and signed in ASL by Deaf rabbis. Doors were opened as the Deafblind Jews soaked in the information, the spirituality, and the camaraderie. Sharon Segal, an SSP who flew in from Las Vegas, expressed it well. “This is not called ‘access,’ because there were no ‘barriers.’ It is not about pity. It’s about letting them be like everyone else.”
Two Deafblind men celebrated their long-awaited bar mitzvas on Shabbos morning. After being gently pelted with candy, Jeff, of Illinois, expressed his joy at being able to celebrate with friends. “When I was 13, my parents said it would be too hard to make a bar mitzvah for me, but I knew that G-d wanted me to do this.”
Throughout Shabbos, the Deafblind participants facilitated sessions about building community. They left with several vlogs (video blogs), articles, Facebook groups, and promises to support each other and remain connected between the Shabbatonim. “We all felt connected to each other because of our shared experiences living with Deafblindness,” said Karen. “This Shabbos, we were a community of Deafblind Jews.” This is what an open door looks like.
*Caucasian interpreters wear dark clothing to contrast with their skin so that their signing is more easily visible.
** Tactile Sign Language is used by people who cannot see enough to read visual sign language. The receiver places their hands lightly upon the back of the hands of the signer to read the signs through touch and movement.
*** SSPs are deaf or hearing people who are trained in communication and mobility techniques for people who are Deafblind.
The Deafblind Shabbaton takes place every two years and is the only event of its kind in North America. Primarily sponsored by the Louis D. and Morton J. Macks center for Jewish Education in Baltimore, the program is run by local Deaf, hearing, and Deafblind volunteers and one part-time professional. The group would like to catapult this event into a group trip to Israel that caters to the specific needs of Deafblind Jews. Here is a link to our Deafblind Israel Dream: https://youtu.be/bR2riVrTv-4.
