Making the Tent Accessible

Confab addresses needs of Jews with disabilities

by Richard Greenberg
Associate Editor

Rebecca Dubowe, who may be the only deaf woman rabbi in the world, has a message for those who, perhaps unwittingly, have erected barriers preventing people like her - those "born into the graceful world of silence" - from fully participating in Jewish life.

"We need your help to break down these barriers," Dubowe told participants at a disabilities awareness summit held Sunday at the Religious Action Center of Reform Judaism in Washington, D.C. "We don't bite."

Dubowe of Temple Adat Elohim in Thousand Oaks, Calif., was one of five summit panelists who offered personal testimonials revealing the challenges they face as Jews with disabilities.

In making her plea, Dubowe was speaking on behalf of any Jew who has been patronized, stigmatized or otherwise marginalized because he or she doesn't conform to the mainstream notion of "normality."

That includes the most visible class of disabled people - wheelchair-users, the blind and others with easily recognizable physical impediments. They can usually be accommodated with the help of bricks-and-mortar improvements that make synagogues and other Jewish institutions more accessible. Many Jewish organizations have made significant strides in this area, according to several conference participants, but much is yet to be done.

The group to which Dubowe was referring, however, also includes those with so-called "invisible disabilities," such as depression, chronic pain, psychiatric or behavioral disorders, language problems and intellectual deficiencies.

"These are a lot more challenging," said summit attendee Sara Rubinow Simon of Rockville, chair of the United Synagogue of Conservative Judaism Commission on Inclusion of People with Disabilities. "The reason is that you have to discover them through relationships, and in a synagogue setting, you don't always have time to get to know people well enough to do that. Plus, a lot of people aren't forthcoming about their hidden needs."

Consider Paula Erdelyi of Louisville, Ky., who suffers from chronic pain syndrome and bipolar disorder that has triggered depression so severe that she once seriously contemplated committing suicide.

"These disabilities come in many forms," said Erdelyi, 61, who has served as a cantorial soloist at several congregations. "Not every one of them can be seen or even understood. It's scary. It's so frightening to people because it's unknown."

Erdelyi said she and similar sufferers could benefit from a frank discussion of their difficulties that would include, for example, rabbinic sermons aimed at fostering acceptance of people with hidden handicaps.

"Sometimes, people suffering from chronic pain syndrome are looked at as whining or malingering," she said. "But it's just as legitimate as any other disease process."

Jacob Christensen, 22, is in a similar category. In second grade, he was diagnosed with attention deficit hyperactive disorder. He was later found to have Asperger's syndrome, a developmental disorder that is characterized by impaired social development.

"I don't like being patronized," said Christensen, who lives with his parents in suburban Minneapolis, where he attends a community college. "But getting people to believe that you actually have a disability is not always easy."

On the other hand, Neil Jacobson's disability cannot be hidden. The 54-year-old Oakland, Calif., resident has cerebral palsy, and as a result, uses a wheelchair.

Still, he was required to stand - with the help of his father - for his entire bar mitzvah ceremony. "The message was that standing is OK and sitting is not," he told the estimated 60 summit participants, who had come from around the country.

"But there has been progress," he added, pointing out that when he and his wife were married almost 25 years ago, "not only were we able to sit through the ceremony, but our rabbi sat as well."

Summit attendee Lenore Layman also has seen gains. She is the director of special needs and disability services for the Rockville-based Partnership for Jewish Life and Learning.

"There's been progress, but there are still many families that don't feel like they're part of the community," she said in an interview. On the plus side, she added, several local synagogues have formed inclusion committees and similar groups aimed at helping disabled individuals feel at home.

Despite these and other piecemeal improvements, "the biggest challenge is the attitudinal rewiring of the community," said Rabbi Richard Address, director of the Department of Jewish Family Concerns for the Union for Reform Judaism. "It's a systemic issue within every congregation. This is the beginning of the conversation."