“Mommy, can I have some water?” asked Joshua Goldenberg, a 7-year-old with a beautiful mane of curls and a gap-tooth smile. His mother, Christie, handed him a bottle.
“How do you know it’s water?” he asked.
“Because it says so on the label,” she answered.
Frustrated, Josh responded, “Why isn’t it in Braille, Mommy? I want it to be in Braille. I want to read it, too.”
Rather than explain to her blind child that the world in which they live is rarely accommodating to his needs, Christie responded with the family’s characteristic can-do attitude: “Let’s work on that, Josh.”
And work on it, they have. The Goldenbergs, Simi Valley residents and members of Adat Elohim, are pioneering what is quickly becoming a movement to increase awareness and accessibility for visually impaired shoppers in Southern California. Sparked by one of Josh’s many questions about the ways of the world, the family has begun to bring Braille labels to grocery store shelves at two local markets.
The idea came about not long ago as Josh and Christie were shopping.
“How can I buy things if I can’t read what’s there?” he asked his mother, fingering the smooth shelf signs. The simple question struck Christie, so they set about finding a solution.
“When I can’t find the resource that Josh needs, I create it,” said Christie, a stay-at-home mom of two, including Josh’s sister, Hannah, 14. Josh was born with one missing and one non-functioning eye to Christie and her husband, Evan, and the family has always tried to work through each new challenge as it arose, rather than see roadblocks for Josh.
Josh balks at using a walking cane and insists on doing everything that other kids do — including attending regular public school, riding a bike, skate-boarding, swimming and enjoying movies (his doting big sister narrates) — so when Christie discovered that the only resource available to visually impaired shoppers is employee assistance, she knew that wouldn’t cut it for her ferociously independent son.
The Goldenbergs first approached management at Trader Joe’s in Westlake Village with the proposal of putting up Braille labels for select items; when they received permission, Josh excitedly stamped out labels on his green, antiquated-looking Braille typewriter.
NBC Channel 4 news featured two segments on Josh in April, in which fellow shoppers marveled at Josh’s ingenuity. One shopper said, “What a precious thing to do, especially for a child to do it.”
Josh’s father, Evan, remarked how many people have expressed surprise that no one else had thought of this before, and that it took a 7-year-old child to point out a basic lack of resources for the visually impaired.
Trader Joe’s management later removed the Braille labels — a corporate representative would not comment on the specific reasons, but did say the company makes great efforts in other ways to assist shoppers with special needs — but the setback didn’t dampen the Goldenbergs’ pioneering spirit.
In fact, they were already tackling the shelves at another neighborhood grocery store — the Whole Foods store in Thousand Oaks — whose management not only welcomed what was becoming known as The Joshua Project, but also brainstormed ideas to make the system functional, raise awareness and increase the scope of the project.
Shelving for dozens of items now are marked by clear plastic Braille labels, and displays on the aisles have big blue signs explaining the project. Employees even Brailled their nametags.
“Part of our core values is to support the community,” said Ashley Eaton, the store’s marketing supervisor, whose enthusiasm sparked a momentum that now has the Goldenbergs thinking big.
“It’s always been about what Josh wants,” said Evan, an Internet sales director at an Audi dealership in Thousand Oaks. “And Josh wants to Braille the whole world, including Target — he loves Target. But this is an opportunity to take it beyond Josh’s needs, to turn it into a nonprofit to help thousands of others.”
E-mails from parents of other blind children have already started pouring in — they want to Braille their store shelves, too. Christie, who belongs to an online community of parents of blind children, is excited to serve as a guide for others struggling to find resources for their children.
In their fight to make the world a more accommodating place for Josh, the Goldenbergs have discovered the most effective approach is to make it personal. When they go to ask for assistance at the school district office, at government agencies or from the management at grocery stores, they bring Josh.
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In Israel, cutting edge help for visually impaired kids
Strolling among the young children playing on ELIYA’s vibrant and colorful campus in Petah Tikva, just outside Tel Aviv, feels, for an instant, like a visit to any well-run preschool. But ELIYA is that and more — a preschool for blind and visually impaired children designed to assist their growth and development through programs ranging from classroom teaching to hydrotherapy.
ELIYA (pronounced eh-LEE-yah), the acronym for The Israeli Association for the Advancement of Blind and Visually Impaired Children, serves more than 100 children, infants to mid-teens, through its various programs. The organization’s three branches, located in Petah Tikva, Jerusalem and Be’er Sheva, offer mommy-and-me classes and a daily preschool program for children (ages 1-3), while ELIYA’s summer camps and retreats bring blind or visually impaired older children together with family, friends and volunteers.
At ELIYA’s main branch in Petah Tikva, coordinator of resource development Orly Layzer pointed out features that reflect the careful consideration behind every aspect of the schools’ approach. For example, the color scheme — white and red — offers a contrast, which children with partial vision can discern and use to orient themselves. Classroom floors are divided into three tactile parts — wood, carpet and rubber — so children can use their sense of touch to find their way around the classroom. The same principle applies to the playground, where a little boy was able to keep his toy truck within the bounds of a gravel area by pulling back whenever he encountered a surface that felt foreign.
The hydrotherapy center provides another means for the children to work on their sense of orientation and comfort in new environments. ELIYA also provides rehabilitative horseback riding, offering blind and visually impaired children an enjoyable way to improve their navigational abilities and develop steadiness and balance.
ELIYA’s chadar choshech (dark room), helps pinpoint what, if any, vision a child has. Computers, glow-in-the-dark stars and even disco balls become the sole source of light in the room, allowing teachers and therapists to track a child’s eyesight. Then, having identified the limits of the field of vision, staff can help a child maximize abilities. Teacher-child ratios are at most 1-to-2, and ELIYA individualizes its program for each child.
This degree of specialization is what ELIYA executive director Michael Segal considers key to accomplishing ELIYA’s goals. “We want to help children with visual impairments to become more independent people…. It’s a different concept for philanthropy — a philanthropy of excellence,” he said.
Segal uses a Hebrew phrase, mitztainut lo miskainut (which roughly translates as “excellence not pity”), to express ELIYA’s mission. The organization also works hard to accommodate a diverse religious population. The Jerusalem branch, for instance, serves Orthodox and secular Jews as well as Muslims and Christians, and tries to provide for the needs and observances of each.
Segal began volunteering for ELIYA in 1984, in response to an advertisement he saw in a local Israeli newspaper. His involvement grew, and in 1991 he took on the role of executive director, his current post. Segal has never taken a salary for his ELIYA work, and in 2005 he received the President’s Award for Volunteerism. But he humbly deflects questions about this choice. “I wanted to continue the work, and I was able to…. I grew up with the notion of wanting to do for the community,” he said.
ELIYA hopes soon to have an interactive Web site where parents and the general public can access information about the blind and visually impaired.
Another special program is ELIYA’s summer camp for visually impaired children. Some attendees (ages 5-13) are past graduates of ELIYA’s preschool program, but others come from different parts of the country. Together with volunteers, they participate in a full range of regular camp activities — arts and crafts, sports, cooking, nature trips and music.
Segal told a story of one graduate whom he met on an air force base years after he’d left the school. Despite his visual impairment, this graduate now held an extremely sensitive job in the army. It felt wonderful, egal said, to see the young man had carved out a rewarding niche for himself.
ELIYA-USA will honor Maury and Lisa Friedman with its 2008 Visionary Award on Nov. 9 at the Skirball Cultural Center.
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Why is This Seder Different From All Other Seders?
Every seder presents its own challenges, whether it’s in deciding which haggadah to use or how much wine to add to the haroset. But for families of people with special needs, the usual frenetic Passover planning can go into overdrive as they search for ways to make the seder meaningful for all their loved ones.
Fortunately there are a number of Jewish resources that can help. The New York-based Jewish Braille Institute, for instance, provides haggadot in Braille, large print or audiocassette versions for the blind and visually impaired. The institute carries nearly every haggadah imaginable, from the “Women’s Haggadah” to the heavily traditional “Birnbaum” edition and even the standard “Maxwell House” version.
Israel Taub, associate director of the institute, said the aim is to keep people who lose their vision involved with their family’s holiday celebration.
“Say Grandpa has led the seder for many years, but now, even with special glasses, cannot see well enough to read the haggadah,” Taub said. “He is then forced to sit on the sidelines, trying to remember what comes next. He no longer feels like the patriarch of the family. Along comes JBI and the first thing we want to do is get Grandpa back at the head of the table. So we send him the materials he needs to put him there.
“It’s the same with any holiday. We need to find a way of including someone with a visual impairment, rather than having them feel excluded or, which is especially true of the elderly, becoming a shut-in,” Taub said.
The materials are free (even the postage is paid for by the U.S. Postal Service), although a certification of visual impairment, usually in the form of a doctor’s note, is required. The organization also loans audio books to people with dyslexia and other learning disabilities. For more information, call (800) 433-1531 or visit the JBI website at www.jewishbraille.org.
Relatives of the deaf and hearing impaired face the opposite challenge: How to make the seder visually stimulating in the absence of sound. Jan Seeley, administrator of Temple Beth Solomon of the Deaf, said her congregation uses props like frog puppets during the reading of the plagues to keep people, especially children, interested during their community seder.
“You also need to make sure the room is logistically good for signing,” she said. “Everyone should be seated so they can see the leader. It’s also nice to make sure the lighting in the room is bright enough — some of those banquet rooms at hotels can be awfully dim — and that if there are curtains or a backdrop [make sure] it is dark and the pattern is not too busy. A backdrop that is light in color doesn’t work for us because it makes a signer’s hands blend in.”
Seeley said the congregation follows a traditional service, but with a twist — like having a finger spelling contest for the song “Had Gad Ya.”
“It gives us a visual break in the service,” she said. “To watch someone sign for three hours is just exhausting.”
Like the third and fourth of the fabled Four Sons, autistic, developmentally delayed or learning disabled children have a tough time grasping the meaning of the Passover experience. A traditional seder, with its heavy reliance on sitting still and reading from a book full of archaic and unfamiliar words, simply will not work. Instead, parents of these children, like Rabbi Bradley Shavit Artson, often find it easier to create their own service.
“The requirement of the Passover seder is fairly broad,” said Artson, who was recently appointed dean of the University of Judaism Ziegler School of Rabbinic Studies and whose son, Jacob, has autism. “You have to mention certain things, but the core of the haggadah is in the telling of the story.”
Artson said his family follows the traditional ceremony through all the brachot until they reach the midrash about the journey out of Egypt. They then close their books and tell the story through a mixture of music and drama.
“We actually dress the kids up and they enact the story, confronting the Pharaoh and signing songs about the plague and marching to freedom. Then we go back to the table and complete the seder, which meets the halachic requirements.”
Artson, along with Ruth Lund, has compiled a booklet titled “Kid’s Songs for Passover” to help families in creating their own seder rituals. It is available free through the Board of Rabbis of Southern California at (323) 761-8600.
The rabbi said the important thing is for each family to make the seder something their children and loved ones can appreciate, each at their own level.
“Forcing children to endure an endless ritual they don’t understand is a perversion of the intent (of the seder),” Artson said. “This is our ‘kid phase’ of life, so we have a seder that is different than the one we will have ten years from now.”
AJ Congress’ Surgery