“Not everyone can have a job,” said Rabbi Eli Seidman.
He’s right — and it’s not because of the economy.
Eileen is a resident at Allegheny Valley School, a residential therapy program for people with intellectual and developmental disabilities. There, she said she feels lucky to be a laundry folder. Some residents are too profoundly retarded to function in an occupational setting.
The perpetually smiling Eileen is also Jewish, and as such, Seidman and his volunteers with the Western Pennsylvania Auxiliary for Exceptional People visited, like they do every month, to bring a bit of Judaism to her otherwise secular life. The group has operated for decades now, but the Thanksgiving visit reached just about two dozen Jewish residents in four different area facilities.
That’s a far cry from the nearly 400 the Auxiliary reached in its heyday over 20 years ago, said Arthur Spiegel, the group’s president and one of its most enduring members.
Now, the group wants to seek out the area’s Jewish exceptional people, as many with severe retardation are called, so that the Auxiliary can best serve its function — to make the Jewish community’s fringe members, some forgotten in institutions altogether, feel the warmth of the community’s core.
And the Auxiliary needs help, said Spiegel.
The Health Insurance Portability and Accountability Act (HIPAA) prohibits institutions such as Allegheny Valley School and Verland Foundation, two of the Auxiliary’s core visitation spots, from releasing personal information, including religion, no matter what the motivation of the request.
“Our whole purpose here is to reach out to obtain names of other clients that we just haven’t been able to find,” said Spiegel, citing deaths and communication breakdowns for the shrinking of the group’s visitation lineup.
Seidman, who works at the Jewish Association on Aging, and his Auxiliary members Amy Schwartz and Bernice Elinoff, didn’t focus on the push for growth while sitting around a long, empty table at Verland. Put that hope on hold; when residents Laurel and Susie, both wheelchair-bound and profoundly retarded, were rolled in, the Auxiliary sprung into action.
“Laurel is looking older,” said Elinoff.
“We all are,” said Seidman, his response quick, with a grin.
The three sung “Heveinu Shalom Aleichem” with a full percussion section of claps. Seidman spoke about Thanksgiving traditions and the group’s upcoming Chanuka luncheon.
“Are you excited to come and celebrate Chanuka?” Seidman asked, getting no obvious response.
Back in the car, Seidman reflected on the 20-minute Verland visit — all the visits in fact.
“We’re trying to create a sense of community. This group is a lifeline from the Jewish community that these people, for the most part, live far away from,” he said. “Even Susie and Laurel understand that closeness, even if they can’t comprehend what’s going on.”
Schwartz, the group’s most spirited member and natural song leader as a music therapist, nodded in agreement.
“It’s their neshama, their souls,” she said. “They get it. They understand.”
Though Elinoff loves to stress how long she’s been an Auxiliary member (“These are my people, and I’ve been doing this for years,” she said), Pittsburgh Rabbi Leib Heber founded the group in the late 1970s. Heber, who served as the Jewish chaplain at more than a dozen state institutions, would prepare brown-bag sandwiches and candy with his wife and drive to visit the area’s Jewish exceptional people. Heber bought an ad in The Jewish Chronicle looking for help, and Spiegel answered. Soon, he was driving Heber to Ebensburg State School and Hospital, where they visited a profoundly retarded man.
“When we left, I said, ‘Rabbi, you’re dragging all this way to visit one person? Isn’t it an expensive time waste?’ He got very angry with me, and said to understand the meaning of the smile on his face when we handed him the bag,” said Spiegel. “It really hit home for me.”
Spiegel helped Heber turn his visits into a formal organization, including a new car and driver, large luncheon events and funding from the now-named Jewish Federation of Greater Pittsburgh.
Heber’s list of exceptional people to visit grew through the 1980s. By the end of the decade, the Auxiliary ran full-page ads in the Chronicle spreading the word of their Passover seders and Chanuka events, continuously looking to reach more families.
“The group’s been steadily operating, but on a much smaller scale since Rabbi Heber’s demise” in the late 1980s, said Spiegel.
“Some of the people we visited have died, and we haven’t really gotten new people involved in the group,” said Seidman. “The people we see, that pool is getting smaller.”
The pool of volunteers with the Auxiliary, though, has stayed small and steady for decades, largely because “it’s too emotional,” said Seidman. “People will tell me they’re glad I’m doing this, because they couldn’t.”
Support more often comes monetarily, instead, because people “don’t like the view,” said Spiegel.
Some of the discomfort or disconnect comes from the difficulty to actually reach people with profound retardation, people who show little sign that they comprehend the presence of the group visiting.
“You can see the level of our individuals; we cannot tell how they really perceive their environment,” said Marianne Blumenschein, a social worker at Verland. “But we talk to them as if they understand what we are saying. It’s up to God how they perceive it.”
At Verland, Seidman, Elinoff and Schwartz finished singing a Chanuka song. Laurel tilted her head forward, making the only sound of the entire visit. Just a short, halted sound, then a smile. Not much of a reaction, it seemed. But for the Auxiliary, the smile was enough.
To reach the Auxiliary with information on an exceptional person, email Rabbi Eli Seidman at email@example.com.
(Justin Jacobs can be reached at firstname.lastname@example.org.)