COVER STORY:Challenging the mentally challenged

Dina Shapiro was all set to move into a sweet two-bedroom apartment in Lafayette, and couldn’t wait to tell her friends. Shapiro, 40, has mental retardation, and had lived with her parents her whole life. With the move, she would be living on her own for the first time.

She is just one of hundreds of Bay Area Jews living with developmental disabilities (the term describes a host of conditions, from mental retardation and autism to epilepsy and cerebral palsy). Though some feel this population is underserved within the local Jewish world, there are many dedicated professionals working with people like Shapiro, helping them strive for success and add Jewish content to their lives.

Shapiro shared the good news about her apartment with friends at Chaverim (Hebrew for “friends”), a group of developmentally disabled Jewish adults that meets bimonthly at Lafayette’s Temple Isaiah. After the applause died down, group member Tim Sheats, wearing an oversized black Stetson, suggested that everyone head over to Shapiro’s new place to put up one of those little Jewish things that goes by the door.

“Great idea!” said Debby Graudenz, facilitator of Chaverim and disability services coordinator for Jewish Family and Children’s Services of the East Bay. “It’s called a mezuzah.”

Graudenz launched Chaverim last summer to give mentally challenged Jews a place of their own: safe, fun and haimish. Members meet, talk, do art projects and learn about Jewish life.

It’s become one of Graudenz’ favorite programs, and her enthusiasm flowed at maximum mega-wattage throughout the morning. Leading the group, she became a human neon sign, speaking in a loud voice and making broad facial expressions.

“When I work with people with developmental disabilities, I notice subtleties pass many of them by,” she explained later. “So I go in the opposite direction. I tend to make things bigger.”

The Chaverim members proved more than disarming. In fact they managed to dispel every stereotype of the mentally challenged in the course of a single morning.

“They have the same sense of humor, the same need for companionship, the same need for sexual contact, the same need for socializing as anyone else,” noted Graudenz. “Some of the more higher functioning are very much able to have relationships.”

The group has two married couples: Tim Sheats and Lenora Jacobs, and Eugene and Dina Greenberg. The latter two are Russian immigrants, and though Dina struggles with her English, Eugene is now, impressively, bilingual. Another member, Betsy Kenner, is a medalist in the Special Olympics, now in training for the ski team. Ron Fruman works as a bagger in a gourmet grocery store, and Douglas Quinn drives a car (meaning he passed the same driver license test many so-called normal people fail routinely).

It seems there’s little these folks cannot do, though they generally get by with a little help from their friends. And the government.

Like most developmentally disabled Californians, Chaverim members work closely with an independent-living-skills case manager based at one of 21 regional centers. They are state-funded facilities that help people with a range of physical and mental disabilities to learn new skills and live independently. The Oakland regional center alone serves a population of 12,000.

However, before the formation of Chaverim, there weren’t many local opportunities for developmentally disabled East Bay Jews, children or adults, to congregate in a Jewish setting just for them. And parents and Jewish professionals say the Jewish community in general has been slow to acknowledge the needs of the mentally challenged.

Flora Kupferman, special education consultant at the S.F.-based Bureau of Jewish Education, knows firsthand the challenges of serving the broader community of developmentally disabled Jews. “We know there are families out there, but their needs are very diverse,” she says. “It’s hard to make programs that are effective for people on a regular basis.”

It wasn’t for lack of trying. Kupferman identified many families in need, asked them what they wanted for their developmentally disabled family member, then created programs to serve them.

“Once we had a program, there were lots of reasons they couldn’t come,” she says. “It was absolutely frustrating. We got the money; we said, ‘Here we are. We’ll give you what you want,’ but the attendance was low.”

She does count among her chief success stories an annual family retreat at Camp Newman in Santa Rosa, now in its third year.

Anita Friedman, executive director of the S.F.-based Jewish Family and Children’s Services, echoes Kupferman’s desire to serve the developmentally disabled community and notes with pride some of the programs her agency has created.

“We have been serving adults and children for many years,” she says, “with clinical programs, early identification programs, consultation and counseling, financial aid for special needs. Our board recently voted for a new independent living program. The goal is to keep people in the [mainstream] community.”

Graudenz has the same goal.

“I’ve always been drawn to this population,” she says, “and always worked with people the rest of society has marginalized. I feel like I’m making a difference.”

Graudenz also recently formed Shira, a group for Jewish children with developmental disabilities. They meet monthly in Piedmont at the home of Susan Rancer, a Texas-born music therapist with a studio/rec room full of instruments, mostly the banging kind: tambourines, wood blocks, marimbas, ad noisyum.

To warm the kids up, Rancer accompanies herself on guitar to sing “Shalom, Chaverim,” “Hine Ma Tov” and other familiar Jewish tunes that grow more familiar each week.

Her students have a variety of disabilities, from mild retardation to autism. Some are boisterous and talkative, others nonverbal. But from the outset, it’s clear the kids love the music, even if only a few actually sing along.

Eventually, Rancer brings out the instruments and the kids go to town. Jake Goldstein, 5, happily takes up a pair of mallets and does his thing on the xylophone. Jake is somewhere on the mild end of the autism spectrum, but enrichment programs like Shira are just what the doctor ordered.

“Susan is rare,” says Jake’s mom, Lisa Barbato. “She’s in their face and really believes these kids can learn.”

Parents like Barbato sit around the perimeter of the studio, all having as good a time as their kids. It means a lot to them not only to have a fun place to bring their special-needs children but to have a Jewish environment for them as well.

“The parents love it,” says Rancer. “They can’t go to a regular Sunday school program, and if not for this, the kids aren’t getting any Jewish content.”

Rancer is ever ready to tout the benefits of music therapy. “If the kids don’t have language, they can listen,” she says. “Music is a right-brain activity, tapping into a different part of the brain, so some nonverbal kids will actually sing with me.”

Rancer knows firsthand the challenges of parenting a disabled child. Her 11-year-old son David died three years ago, the victim of familial dysautonomia, a degenerative genetic disorder that affects Ashkenazi Jews.

“The parents [of clients] look at me in a different light,” says Rancer, “because I lived this kind of life. I empathize with them.”

Clayton resident Randi Goldman brings her 8-year-old son Ryan to Shira. Ryan is a high-functioning autistic child who attends public school, but his opportunities for Jewish learning have been limited.

“It’s our world, his roots,” says Goldman of the family’s Jewish heritage. “I know Ryan can learn enough to have a bar mitzvah of some kind, and music is a big way of getting to him and these kids.”

Beyond the benefits to the children, the parents also relish the opportunity to socialize with others going through the same experience. “That’s really important,” says Goldman. “When I started this, I was all alone: no support group; I didn’t hook up with anyone. Now I go to conferences and get out there to educate people.”

Still, not every Jewish institution has gotten the message. “Synagogue programs are too small to provide something this specialized,” says Graudenz. “But what’s true for anyone with developmental disabilities, the more you give them in early intervention, the better the outcome, and the more you increase the chances of reaching their fullest potential.”

Says Barbato, “There’s a definite lack of services. It took us over a year just to find Susan [Rancer].”

There are other programs for Bay Area Jews with developmental disabilities at synagogues and Jewish agencies. Hatikvah House, the region’s only residential home for Jewish mentally challenged adults, has been up and running in Campbell for several years. But it serves only a handful of residents, and the need for more facilities and programs throughout the region remains great.

Back at Chaverim, Graudenz explained Pesach to the members. “What,” she asked, “do we start the Passover meal with?”

“Chicken,” joked Dan Kaswan, fully decked out in S.F. Giants gear. Kaswan has Down syndrome, but he’s also got a quick wit, as do many of his friends in Chaverim.

“When I was a kid,” cracked Shapiro, “I once drank the saltwater at a seder.”

After Graudenz led the group in “Dayenu,” it was snack time. Sadly, the ovens at the local Noah’s Bagels were on the fritz, so Graudenz had to settle for a dozen Safeway bagels. But no one complained.

As the meeting wound down, the members gathered in a circle, held hands and sang, “Shalom, Chaverim.” There was no trace of discomfort. These Jews sang it like they meant it. One by one, they filed out, most waiting for rides back to their homes, located all across the East Bay.

As Dina Shapiro gathered up her things (including her backpack bedecked with Teletubbies dolls), she reflected on the many life changes she faces. Though she lost her father a few years ago, and her mother is now quite old, Shapiro showed no fear or anxiety. Instead she was the very picture of pure excitement.

“It’s time for me to move out,” she said. “It’s time for me to set my wings.”

Dan Pine

Dan Pine is a J. staff writer. He retired as news editor in 2020. Dan can be reached at dan@jweekly.com.