June 5, 2003
In the late '70s, a poster appeared on the walls of synagogues and Jewish buildings. It showed a long flight of stairs, leading to the entrance of a synagogue. At the bottom of the stairs a man sat in a wheelchair, looking up.
The poster perfectly captured an issue that was just beginning to make its way into our consciousness: the desire for belonging by Jews with disabilities.
Most synagogues today are physically accessible. Indeed, many of us can't remember the days before ramps and lifts, automatic doors and disabled-accessible restrooms. Even the bimah has become accessible, finally putting an end to the humiliation of a person in a wheelchair being carried by friends up the stairs to the Torah.
Some of this has come about as a result of legislation. But before the legislation, there was a remarkable man named Larry Carmel, co-chair of Council on Jewish Life's (CJL) Commission on Jews With Disabilities. And it was Larry to whom we owe the greatest gratitude -- not only for the changes in physical accessibility that he captained but for the attitudinal changes in our community that resulted in institutional agreement that lack of access should no longer be tolerated.
Larry died this year in San Diego on Feb. 18 at age 78. He, himself, was disabled, but not from birth. Badly wounded in France during World War II, he was awarded the Victory Medal and Purple Heart. He then contracted polio in the hospital where he was recuperating and the remainder of his adult life was spent in a wheelchair, coping with severe physical hardships. But Larry triumphed.
Under Larry's tutelage, the CJL created forums for groups of disabled and "temporarily able-bodied" to come together for discussion, sharing best practices and identifying both resources and gaps in service in our community. It also created a powerful network of people with disabilities and their families to enhance awareness in the general community. The CJL hosted the first Conference on Jews With Disabilities and published "The Resource Guide for People With Disabilities."
The goal of his work, however, was to raise community consciousness, to emphasize that while ramps are easy to build, helping people understand the need for them -- changing an attitudinal culture -- is not.
We needed Larry then, and we need him today. For while the issue of accessibility for Jews with physical disabilities is at least understood (if not yet fully realized), the issue of accessibility for Jews with "invisible" disabilities -- developmental disorders, learning disabilities, mental illness -- is not. Part of the problem is, of course, the invisibility.
Unlike people with physical disabilities, people with invisible disabilities are often judged by their behavior. Autism? Wow, sure don't want my kid playing with that weird kid! ADD/ADHD? That kid sure is out of control -- parents must need parenting classes!
Depression? Why can't he just get on with his life?
Invisible disabilities are "contagious" -- they spread to family members as well, who experience isolation and marginalization from communal life. The mother fighting for her child to enter a Jewish preschool is "aggressive and pushy." The spouse of a person with bipolar disorder is to be pitied -- but don't get too close or she may overwhelm you with her problems.
Attitudinal barriers make concrete solutions more difficult. Synagogue involvement, Jewish education, social opportunities, residential services -- some resources do exist, but are these are few and far between. Accessing these resources is a challenge in itself -- there is no central Web site, no consortium of agencies coordinating services and exploring the gaps, no task force of rabbis and educators looking at the ways in which to expand services and open doors to families who are desperate to find a place for their children and themselves to belong.
Larry Carmel knew that passion, intelligence, empathy and a sense of mission were powerful tools for mobilizing a community. And he knew that the battle could not be fought by a single person -- that it takes a community to change a culture. We need a new poster; one that metaphorically resurrects the image of the wheelchair at the bottom of the stairs. How do you illustrate an invisible disability? But we must again make concrete the experience of exclusion and longing. It is time to bring together our community, to challenge the culture of exclusion and to provide the access to bring all of our families home to us.
Sally Weber is director of Jewish community programs for Jewish Family Service of Los Angeles and facilitates a support program for families with special needs children.