Sunday, February 3, 2008

In new film, Down syndrome is no obstacle to prayer


One of my sisters works with disabled people on a daily basis and has done this work for over 30 years, my other sister volunteers to help the parents of disabled kids who need help advocating for their children to get appropriate services in public schools (a really difficult thing--it's like fighting a war).

All my life, I have been exposed to the beautiful and important work my big sisters do--and have grown in not only compassion and understanding, but respect for the disabled members of our communities.

They are not heros; they are not "courageous." They are just ordinary people with extra-ordinary needs who want to be accepted as the friends, brothers, sisters, sons, daughters, fathers, mothers, students, teachers, rabbis that they are.

My sisters always say that "the disabled is one minority group that all of us might join," and they are correct. Spend one day on crutches or a wheelchair trying to get around your synagogue, and you may see the world completely differently.

Don't wait to make your space accessible to the physically disabled, or wired for the hearing impaired, or equipped with braile signage for the visually impaired. Don't wait to include instructions for the parents of disabled children in your bar/bat mitzvah handouts and booklets. Do it now. You may be the one who needs it tomorrow!

Mostly, however, don't feel shy about asking a disabled person if you can help them in any way. It's OK to feel awkward for a moment and admit you don't know what to do--no one does! Every disabled person is unique--some are independent and like it that way, and some need a helping hand every now and then. The best way to help is to ASK if you can help (don't assume and just do things--for example, NEVER grab a wheelchair without asking).

Here's some helpful hints:
  1. Never assume, ask.
  2. Never speak to the caretaker of the disabled person, speak to the disabled person directly.
  3. When speaking to a person in a wheelchair for longer than a greeting, sit next to them, crouch down to their level, or stand a comfortable distance away--it is exhausting for them to look up all the time.
  4. When speaking to a hard-of-hearing person, speak naturally, but face the person while speaking. If you turn away, they can't understand you.
  5. Blind people hear very well, don't speak too loudly when addressing them (it is a natural response to speak loudly at a visually impaired person, it's not your fault!) Be very aware of your voice level as you speak, and lower it if you hear yourself getting too loud. Ask them if they need directions or if they would like to be directed somewhere. If they ask to be directed, ask them why they would like you to do. They will tell you.
  6. Mentally challenged people are accustomed to being treated like one of their family at home and most are much smarter than you think they are. However, they are usually very literal, i.e., sarcasm, puns, and hints are not well picked-up-on. Speak naturally, calmly, and directly. If they need to do something differently, tell them directly, don't hint.
  7. If they have a companion animal, ask before you touch it. If the animal is working, they may not want you to distract the animal until its work is done.

Lior Liebling, who is featured in the new film "Praying with Lior," says he has "Up" syndrome, not Down syndrome.

By Rebecca Wolfson Published: 01/31/2008

NEW YORK (JTA) -- Lior Liebling davens everywhere: in the backyard, in school and on the swing set.

Some congregants at his Philadelphia synagogue, Mishkan Shalom, call him the “little rebbe.”

“The Zohar tells stories of miracle children who were spiritual geniuses," one synagogue member said. "Well, that’s what Lior is.”

Lior is the 13-year-old featured in the new documentary “Praying with Lior,” which highlights the bar mitzvah of a Jewish child living with Down syndrome. The character study of this charming boy tells of how Lior’s community successfully integrates him into communal life -- a challenge many Jewish communities face with mentally and physically disabled members.

Several Jewish institutions, including the Union for Reform Judaism, run programs to improve service to the Jewish disabled, but experts say most Jewish institutions do not do enough to meet their physical, religious and social needs.

“There are people sitting on the outside who desperately want to come in,” said Shelly Christensen, the co-chairwoman of a Reform task force that creates “inclusion committees” for disabled Jews in synagogues, community centers and other Jewish institutions.

While the Jewish community has made progress in recent years, Christensen said, it still has a long way to go in providing disabled members with places to pray, learn and participate.

Down syndrome is of particular concern to Ashkenazim, who are predisposed to the disease; approximately one in 27 carries the gene for Down syndrome.

In “Praying with Lior,” producer and director Ilana Trachtman follows the teenager from his pre-bar mitzvah haircut to the bimah and beyond, checking back with him two years later.

Though he struggles with baseball and schoolwork, Lior is able to pray with sincerity, a feat encouraged by those close to him.

Like Lior’s Reconstructionist community, the children and teachers at Lior’s Orthodox day school admire and accept him.

“There is no such thing as a disabled soul,” Besie Katz, the principal of that school, the Politz Hebrew Academy, told JTA in an interview.

Katz said the students at Politz accepted Lior because while they understood that he had certain limitations, he also had strengths.

“God makes every person with a different test in this world,” one of Lior’s classmates says in the film. “We don’t know what God’s doing. When God made it that Lior has Down syndrome, it also became a test to us -- how we treat Lior, if we do things with Lior.”

Politz was able to accommodate Lior in part because of Orot, a special-education initiative that places children with disabilities in Philadelphia’s Jewish day schools. Orot participants typically begin in a secluded learning environment, and in time they experiment with integrated classrooms.

“It is geared for the children to be successful in the mainstream environment,” Beverly Bernstein, the program’s educational director, told JTA.

Orot is modeled on a program called Keshet started 26 years ago by a group of parents frustrated by the lack of Jewish opportunities for their disabled children.

Now those kids are adults, with some participating in Keshet’s transition program for 18- to 22-year-olds. It sets up participants with jobs if they are able to work, and provides recreational programming for young adults.

Orot and Keshet’s biggest challenge, like many Jewish organizations dedicated to inclusion, is funding, organizers say.

They have been helped somewhat by Americans’ growing awareness of people with disabilities, which in turn has raised the consciousness of the issue in the Jewish community.

Birthright israel and the National Jewish Council for the Disabled, which is part of the Orthodox Union, run a free trip to Israel for disabled Jews. The council also runs summer and work programs for special-needs children and adults.

In the Reform movement, Christensen’s task force encourages synagogue leaders to include disabled members. About half the synagogues in the Minneapolis area, where Christensen lives, now have inclusion committees, she said.

And Jewish communities in Toronto, Los Angeles, Houston and elsewhere are prioritizing the issue by designating staff members to make their institutions more welcoming for people with special needs.

Rabbi Dan Grossman, who spoke on a panel that followed a screening of the film in January at the New York Jewish Film Festival, said he has worked to make his Reconstructionist synagogue, Adath Israel of Lawrenceville, N.J., welcoming by offering seeing-eye dogs, a wheelchair-accessible bimah and half a dozen reserved wheelchair spots in the pews -- and not in the back.

Providing a welcoming physical environment is only half the battle, said Grossman, whose hearing impairment made it a struggle for him to become a rabbi.

“Whoever takes the lead role in the congregation needs to take the position that this is important to the identity of the community,” Grossman said of the need to accommodate special-needs members.

“Moses stuttered, Isaac was blind, David was probably hyperactive,” he pointed out.

While the Jewish community has made progress accommodating special-needs children, as Lior’s community did for his bar mitzvah, Lior’s father, Mordechai Liebling, who is a Reconstructionist rabbi, worries that his son will face a tougher environment as he becomes an adult.

Judaism places a high value on scholarliness and education, Rabbi Liebling said, but it's equally important to value people with other abilities.

"I really have a lot of hope," he said, "that the community will take responsibility and do the right thing."

“Praying with Lior,” distributed by First Run Features, opens Friday in New York and nationwide in the spring.

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