Disability Self-Advocates Envision a More Inclusive Jewish Community
By Jeffrey F. Barken
What if Moses never accepted the task to lead the Jews out of Egypt because of his speech impediment? Award-winning author Chava Willig Levy, a polio survivor, uses the episode to illustrate what she calls a clear biblical precedent that people with disabilities have enormous potential to impact society.
“When God said to Moses, ‘I’m tapping you to lead my people out of Egypt,’ Moses [countered], ‘No, you’ve got the wrong guy. I’m disabled myself,’” Levy tells JNS.org. But God gets angry at Moses for doubting himself, and asks, “Whom do you think gave you that mouth?”
Levy’s anecdote introduces a concept that frames an ongoing Jewish communal discussion on the inclusion of people with disabilities. “There is Judaism, and then there are Jews,” she says, reflecting on the dissonance between the religion’s principles of universal inclusion and what Jewish society actually looks like.
On Dec. 17 in New York City, Levy was among at the attendees of the Ruderman Family Foundation’s first conference for Jews with disabilities who are self-advocates. The event brought together distinguished lawyers, rabbis, writers, teachers, and community activists whose successful careers, undaunted energy, and full lives counter longstanding misconceptions about people with disabilities.
The convening of disability self-advocates is “an important step for our community in understanding how we can become a more just, inclusive, and welcoming society for everyone,” says Jay Ruderman, president of the Ruderman Family Foundation. Ruderman, whose Boston-based foundation is dedicated to increasing such awareness, believes that seeking out “the advice of those people with disabilities who have been impacted the most by being excluded from our Jewish community” provides the best way forward for the community.
Levy chronicles her journey in her popular memoir, “A Life Not with Standing.” Paralyzed at age 3, she recalls a happy childhood despite her frequent visits to the hospital, her inability to attend school until age 9, and the many other limitations on her livelihood.
“Having a disability is not tragic,” she tells JNS.org. “What is tragic is the stigma.”
Levy sees language as the primary obstacle to inclusion. As a first step, she describes the need for individuals to feel comfortable asking questions about people with disabilities. In her interactive workshop – called “Mommy, What’s Wrong with that Woman?” – Levy confronts the embarrassment parents commonly feel about answering their child’s natural questions whenever they observe people with disabilities. Likewise, she suggests that communities should be wary of imposing “definitional labels,” terms that clinically diagnose and are dismissive.
“Using the verb ‘to be’ is like placing an ‘equal’ sign on a person’s character, superficially categorizing their appearance or expression, she says. Instead, Levy recommends “functional labeling,” which redirects people’s focus to the ways in which a person adapts and compensates for his or her disability, encouraging positive dialogue and perceptions.
Conference attendee Joseph D. Robbins, a celebrated poet and educator, works to improve institutional access to resources for people with disabilities. Robbins has dysgraphia, and without the benefit of computers and touch screens, he experiences extreme difficulty expressing his thoughts through writing.
“Everyone with a disability has his or her horror story,” Robbins says, recalling “old school” teachers who failed to understand his condition and impossible homework assignments that brought him to tears. Nonetheless, Robbins maintains that his early education was largely a positive experience. Throughout primary and secondary school, he received a warm welcome from teachers and peers, and he says the prevailing attitude of the school board handling his case was, “We’ll do anything.”
Yet while Robbins appreciates the caring mindset of his past educators, he notes that open-mindedness alone is insufficient support for people with disabilities. “You need the goodness of the heart and a plan of action,” he says. The poet references his senior year in college as a turning point, when he felt he had amassed enough tools and strategies to compensate for his disability, if not to draw strength from it. He arrived at this point thanks to a regimented program employing specialists to work with him directly, twice a week. As a result, he was ultimately able to complete graduate school independently.
Robbins’s take-home message is that every educational institution can provide a high level of care through structured programming that maximizes the learning potential of any student with disabilities. But the challenge facing institutions, he says, lies in making advanced resources available. That is why the Union for Reform Judaism and the Ruderman Family Foundation are developing DisabilitiesInclusion.org, an online platform designed to provide instructional videos on practical skills, disability care and awareness, and educational programming. The primary goal of the program is to make all synagogue communities in North America more inclusive.
Another conference attendee, attorney Matan A. Koch, was appointed by President Barack Obama to the National Council on Disability. Koch, who was diagnosed with Cerebral Palsy as a child, has led a distinguished career advising companies on how they can realize the full value of employees with disabilities. As a consultant, he prompts his clients to reflect on the talents and shortcomings of all of their employees – for business reasons, not just for the purpose of inclusion.
“We should be unabashed about business goals,” he says. “When you accommodate someone in the workplace, you enable them to do the things they do well and delegate what they can’t manage.”
Known for his sharp wit and critical thinking, Koch calls self-reflection the best mechanism to assess a person’s potential – a fitting message coming from a self-advocate.
“I think a real accounting of who we are is important to our development, and part of knowing oneself is coming to terms with one’s weaknesses,” he says.