Esther Greenspan has survived a motor disability that interfered with her ability to nurse, 10 broken bones in her first 10 years of life, asthma attacks, scoliosis that required surgical treatment and illnesses that her body has trouble shaking off because her immune system is weak. She’s now 19. In the winter of 2005, her mother, Miriam, took off six months from her therapy practice so that she could research, full time, Esther’s options for the day she turns 22 and “transitions out” of the supports and services guaranteed to children with disabilities under Massachusetts law. The law, known as Chapter 766, guarantees education services for children with special needs until they are no longer eligible to be in school. Looking further ahead, Miriam wonders who will care for Esther when she and her husband no longer can.
Esther is among the estimated 5,000 Boston-area Jews — 5% of the community — living with disabilities. They have varying degrees and manifestations of autism, mental illness, physical limitations, Down syndrome, cerebral palsy, developmental disabilities, retardation and, as in the case of Esther Greenspan, pervasive undiagnosed intellectual, neurological and motor challenges. They and their families are in dire need of assistance, and until recently they have been largely ignored by the Jewish community — and not just in Boston. Across the country, particularly after the passage of the Americans With Disabilities Act of 1990, many in the Jewish community started describing how unwelcome Jews with disabilities and their families felt in synagogues; they also began speaking out against a widespread lack of services. Organizations sprung up to address the issue. In the late 1990s, Boston saw an especially strong surge of parental advocacy for change. The good news is that the community is responding; the unsurprising news, given the complexity of the issue, is that there’s so much more to do.
Advocating for inclusion can feel like doing the two-step: two steps forward, one step back. Miriam Greenspan and her family joined a large Reform synagogue that, for the time — this was the early 1990s — was relatively welcoming of families with special needs children. “I decided on the spot that this was the place we would go,” Greenspan said. “There was no place else that talked about special needs or had any accommodations.” And yet, in 1998, as Esther’s bat mitzvah approached, the cantor told Greenspan it would be held on a Thursday. Ostensibly, this was to shield Esther from embarrassment. “I remember feeling like I was just slapped in the face,” Greenspan said. “And just shocked, because they had seemed so understanding. I think I was one of the first people who said, ‘Sorry, but you know what? We really just want to do it on Saturday, the same way it’s always done for everyone else.’”
Greenspan said that Esther’s bat mitzvah, which was indeed held on a Saturday, represented a turning point for the temple. It was from that point forward that the clergy and community began to address seriously the issue of inclusion for children and adults who have disabilities.
Parent activism such as Greenspan’s has led not only to more accommodations for families with special needs, but also to the formation of associations like Yesodot (Hebrew for “foundations”), a nonprofit organization founded in 2000 and supported by Boston’s Jewish Vocational Services. Yesodot was founded and run by parents who felt that the Boston Jewish community needed to do more for families like theirs. The organization helps alleviate the isolation faced by families that have disabled members by allowing them to mingle with others in similar predicaments.
Yesodot sponsors an annual adaptive technology conference, which showcases everything from ergonomic soupspoons to portable talking computers. Sue Wolf-Fordham, Yesodot’s program manager, took an adaptive bingo spinner made by Ablenet, a company that develops and sells assistive technology, slapped the Hebrew letters shin , hey , gimel and nun on it; now her daughter Lisa, who can’t spin a top but can press a button, plays dreidel with her family during Hanukkah. Lisa also has a talking Haggadah that can recite the blessings, list the 10 plagues and otherwise help her participate in the Passover Seder.
Despite recent social and technological advances, none of this is easy. Parents must advocate for their children endlessly, contend with strained family relationships and help their other children cope with the relentless unpredictability of life with a special needs sibling. Yet parents also tell of deep rewards. Speaking of Esther, Miriam Greenspan reflected, “She teaches me how to value life, how to cherish it, to spring back when I’m totally exhausted, to face my fears, to feel a level of competence about my own ability to meet challenges.”
Two years ago, Combined Jewish Philanthropies started a disabilities housing initiative with a goal of creating 120 units of housing by 2008. It’s a start, but the need is enormous. Housing an adult child with disabilities after he or she leaves home can cost a family $100,000 a year. “This is a huge gap,” said Maureen Connelly, the mother of a 10-year-old special-needs son. It is difficult to take her son to synagogue, to the supermarket, to a Red Sox game or the Museum of Science, because he spits, yells, lies on the ground and takes off his clothes. He has cerebral palsy with pervasive developmental delay and mental retardation, and he functions at the level of a 2-year-old. Connelly worries about the day when she’ll no longer be around to help. Perhaps, she dreams, there’ll be a campus that provides housing for Jewish adults with disabilities, where her son will receive safe, loving care.
Jeri Zeder is a freelance writer in Lexington, Mass.