Overcoming attitudes and stereotypes that pervade the Jewish community can be an uphill battle. Just ask Jay Ruderman and others who attended the recent Jewish Special Needs Funding Conference that he helped sponsor. All of them want to get past the community-created obstacles to their vision of inclusion for Jewish individuals with special needs.
Unfortunately, the philosophy of separate but equal, similar to the platform of many pre-civil rights segregationists, is stubbornly in place throughout Jewish communal life.
Despite some advances and weak attempts at educating special needs children, stereotypes prevail and the very culture of the Jewish experience does not allow for inclusion. Instead, we see a few Jewish schools popping up for autistic, Down and learning disabled children, and even the Virtual School House, a charter school in Cleveland for special needs. The idea of separate but equal ends up lowering parents’ educational expectations for their children.
Congress passed Public Law 94-142 in 1975 and subsequently the Individuals with Disabilities Education Act (IDEA). The law provided that every child from age 0 to 21 who had a disability was entitled to a free and appropriate federally mandated public education in the least restrictive environment at government expense. But public does not mean private, and children who could get great services in the public schools could not be accommodated in private schools.
For my prelingually profoundly deaf/ADHD son, who was born that year, it meant he was educated from the time of his diagnosis at age 8 months until he graduated from high school in 1994. From kindergarten on, Simon was mainstreamed into regular classes with a Cued Speech interpreter/transliterator, speech therapy five times a week for 30 minutes, and daily resource room help. Congress enabled Simon to have an excellent mainstream education, where general education teachers and children saw, experienced and were sensitized to his needs. Hearing children learned to look at Simon and get his attention before speaking to him. They learned the role of an interpreter in the classroom.
Due to the need for accommodations, yeshiva education was never in the cards. Day schools can barely cover the expenses for general education children, much less accommodate the special needs population. Even if the services are paid for and provided by the local school district within the secular portion of the day, many special needs children also need help with the Hebrew curriculum, which the school district is not obligated to provide and the day school cannot afford to provide.
Jewish education and access to synagogue services and communal life were never accessible to my son or his Jewish deaf friends. The few places that provide interpreted services are few and far between. The best I could do was provide an observant Jewish home environment with as much cultural Judaism as possible. He was active in the Jewish Deaf youth group Our Way, eventually becoming national president, but the meetings were held only a few times a year at holidays.
I enrolled Simon in Jewish programs beginning with preschool, where he played alone and no attempt was made by the teachers to bring him into the larger group. When I enrolled him in an Orthodox Talmud Torah where we lived in Maryland, I was told that they were happy to accept him if I paid for his interpreter myself. I did so for three years, struggling paycheck to paycheck. Simon made no friends during that time, essentially being treated like an “Other,” the person among us who is different but whom we must tolerate.
We hired a private tutor to teach him Hebrew and Jewish studies until he read from the Torah during his bar mitzvah. While private tutoring gave Simon a Jewish education, it did not give him the socialization and communal exposure needed to make Jewish friends.
Similarly, attending synagogue services each Saturday was a waste of time for him. We attended a Modern Orthodox congregation, and there was no one in the men’s section to keep him on task or show him where we were in the service, despite requests to several men in the congregation. And then there was the sleep-away camp experience. Sending Simon to camp where counselors were insensitive, no other campers befriended him, and little attempt was made to include him, left him isolated for three weeks and nearly scarred for life.
During the past decade or so, there has been intense focus on promoting the Jewish camp experience and support programs such as Birthright, which keep our young people connected to Israel and Jewish communal life. But we have left behind and excluded children and adults with special needs, and most of them are hungry for the Jewish religious, spiritual and communal experience.
Jay Ruderman understated the problem when he said, “There is not enough in the Jewish community to integrate people with special needs.” Jewish communal life is a negative experience for most Jewish special needs children and adults. And it will take heroic efforts to change the stereotypes, some of them still rooted in the 18th century, and to understand the need for change, much less accomplish attitudinal change.
Sarina Roffé is a freelance journalist, the parent of two sons with special needs, and past president of the National Cued Speech Association (www.cuedspeech.org). E-mail: firstname.lastname@example.org