‘I am disability incarnate,” she states in her self-described, “cerebral palsy accent,” whose honeyed, faintly plaintive tone belies her blunt proclamation. She gets around in a motorized wheelchair. She frets about Access-A-Ride’s frequently unreliable pickup times.
But Sharon Shapiro-Lacks doesn’t want your chesed.
It’s not that she’s not moved by others’ expression of loving kindness, chesed’s literal meaning. While her husband, who usually cares for her, recuperates from surgery, she has been “awestruck” by the response of her community who brought food and comfort. “I still have women helping me bathe as he recovers.”
Rather, it’s chesed’s connotation of charity that so deeply disturbs her. This dynamic creates a division between giver and receiver. Shapiro-Lacks wants — demands — involvement, access and participation “not as a loving kindness response to individuals but as a concern of the entire community.”
Shapiro-Lacks is founder and director of Yad HaChazakah, the first Orthodox Jewish organization to be operated by Jews with disabilities. And she’s one of a growing number of activists, disabled and typically abled, mainstream and sidestream, who seek to weave Jews with all sorts of challenges more tightly into the fabric of Jewish communal life.
The movement, which often goes by the not-universally-loved buzzword “inclusion,” might expect to find an implacable ally in the Torah. After all, patriarchs Isaac and Jacob were blind (although Jacob did exploit his father Isaac’s blindness to receive his blessing), and Jacob’s fight with the “angel” left him with mobility issues. And our greatest teacher, Moses was speech-impaired, compelling him to use his brother Aaron as a surrogate speaker.
But Parshat Emor, with its daunting requirement of bodily perfection for a kohen to pronounce the priestly blessing, has caused centuries of agonizing. “No one who has a defect shall be qualified,” not “blind or lame or has a limb too short or long. . . or hunchback or a dwarf” and on and on.
Fortunately, at times the scholars and posekim (arbiters of Jewish law) from the Talmud on forward, were progressive enough to allow contemporary standards and minhag (custom) to factor in. In one case, Rav Hana was contradicted and a kohen who was blind in one eye was allowed to make the blessing simply because the community was used to him doing so.
Maimonides, the other great Moses, who defined and refined our concept of tzedakah (not just charity, but justice), urged that encounters with people who have challenges be met with this blessing, “Blessed are you, Lord our God, King of the universe, who made people different.” He also declared that enabling those with “needs” to live independently is the highest form of tzedakah.
Perhaps the most time-spanning perspective comes in the story of Rabbi Elazar who while riding on his donkey is warmly greeted by an “ugly” man. He reacts dismissively, “Could it be that everyone in your city is as ugly as you?”
“I do not know,” the man responds. “Why don’t you go to the Artisan who made me and say ’How ugly that vessel You made is!’”
Progress continues over the centuries. The blind receive aliyot. Deaf education demonstrates that hearing-impaired doesn’t mean cognitively impaired, and that stigma diminishes
1990 sees the enacting of the Americans with Disability Act, mandating buildings, transportation and other public accommodations be made accessible to all. It also bans discrimination against the disabled in employment, housing and all other aspects of public life.
Though religious institutions were officially exempt, the Jewish mainstream responded. Ramps and other accommodations began being included in synagogue construction and planning. And those efforts worked. Better access invited more participation among Jews with disabilities and inevitably, more understanding from the typically abled.
“It took getting used to, but the ADA set the standard,” says Anita Altman, deputy managing director of UJA-Federation of New York’s Department of Government Relations and External Affairs.
That fundamental shift towards inclusion continues. Through forums, film festivals, the Federation hopes to change minds. Through its extensive summer camp network and partnership with Jewish community centers, they seek to change lives, promoting inclusiveness where Jews come together.
For example at the JCC in Manhattan, the Adaptations program is helping young Jewish adults with disabilities develop the skills —professional and vocational, personal and inter — that will enable them to lead fulfilled lives. In a move toward true inclusiveness, many of the program’s participants get work experience interning throughout the JCC building. The effect? “Transformational,” says Altman.
That transformative power is felt across denominational lines. An agency of the Orthodox Union, Yachad, organizes Shabbatonim, Israel trips, synagogue programs and just about everything else that can bring Jews of all mobility and ability yachad (Hebrew for “together”).
And the Conservative movement’s network of Ramah Camps has an array of approaches to integrate the 250 special- needs campers it serves each year tightly into the camping community -— including a one-to-one buddy program. One typically abled buddy, began thinking it was "about working with people with different disabilities but I realize it’s just hanging out with people with different personalities."
However, many institutions remain resistant to the possibly transformational possibilities of inclusiveness. Jodi Samuels became a cause célèbre last year when a prominent Orthodox day school in Manhattan refused to consider admitting her Down syndrome daughter Caily — even denying her an interview, despite the fact that Samuels had two other children enrolled in the school. When she went public with her story, Samuels says a board member of the school threatened her. Her community ostracized her, she says, with many withdrawing funding for the nonprofit she founded. “But we won’t be intimidated because I advocate for my special-needs child. We are not victims. I have a right under Jewish and civil law to be treated with respect.”
Rabbi Laurie Katz Braun, past president of the Women’s Rabbinic Network, very much feels Samuels’ pain. While serving as admissions director of the Solomon Schechter School of Manhattan, Rabbi Braun was often “heartbroken” when she could not find a place for the special needs children Schechter couldn’t accommodate. “That the wealthiest Jewish community doesn’t have options isn’t OK. It says, ’you don’t have a place here.’”
Rabbi Braun is gathering Jewish and special-needs professionals into a task force to quickly find solutions. With a grant from PresenTense, an incubator for young Jewish entrepreneurs, the project is titled, Let My People In.
She hopes to emulate Boston’s Day School Initiative: a $45 million partnership between Gateways: Access to Jewish Education, the Combined Jewish Philanthropies and the Ruderman Family Foundation. That initiative enables admittance of special-needs children to any of the area’s 14 day schools.
The Boston community’s united efforts extend to adults with disabilities too.
“We’ve challenged our Boston community to hire 10 percent of Jewish agency workers with disabilities,” says Jay Ruderman, the Ruderman Family Foundation’s president. “We will go to the business community and say, ’Hey it’s not charity. These are good workers and are good for business.’”
Working with the Jewish Funders Network, Ruderman is creating a network of philanthropists who, with the nimbleness of entrepreneurs, will try to accelerate the plodding pace of institutional change.
"We’ve made great progress," says Yachad’s national director, Jeffrey Lichtman, "but we’re not there yet."
One problem according to Jay Ruderman, is that the Jewish community at large seems more concerned with continuity than disability, “going after upwardly mobile Jews whose interest is marginal and not those of us who desperately want to be included.”
“You write a check or host a Shabbaton once a year and say, ’Great! Done!’” adds Samuels. “We’re asking people not to open their checkbooks but their homes, their hearts, their schools. That’s a different level of commitment.”
And as Sharon Shapiro-Lacks mordantly notes, fully acknowledging those with physical challenges can put the typically abled uncomfortably in touch with the frailty and weakness of their own flesh, blood and brain. Should we live long enough, we will likely all become disabled.
“We must look at our stigma about weakness. And that out of weakness can come strength,” she says.
Jewish tradition teaches we are all created in God’s image. Ultimately for our time, it will take soul-searing empathy, generosity, resources, difficult conversations and some painful Rabbi Elazar-like realizations for both typically abled and Jews with disabilities not only to see the face of God in each other but also to truly embrace it.
Jeffrey Yablonka is a Manhattan-based freelance writer.