The great Jewish sage, Hillel, who lived in the first century BCE wrote:

If I am not for myself, who is for me?

If I am for myself, what am I?

If not now, when?

Pirkei Avot (Ethics of Our Fathers)

Parents of children with disabilities and Jewish educators have translated these words of wisdom into practice for they offer important guidelines toward educating children in religious schools. Hillel’s three questions encourage us to examine how to provide meaningful education. Historically, there have been too many children with disabilities and their families who are left outside the welcoming circle of Jewish life.

If I am not for myself, who is for me?

Who bears the responsibility to educate our children “each according to his or her needs?” (Proverbs: Mishlei 22:6)

Many Jewish communities in the United States and Canada have answered Hillel’s first question by establishing special needs education and inclusion programs that are devoted to providing structure and substance to education for children with disabilities. A number of these organizations are members of the Jewish Special Education International Consortium founded over 20 years ago by Rabbi Dr. Martin Schloss and Dr. Sara Rubinow Simon. The Consortium provides a forum for directors of community special education agencies.

Dr. Simon explains why she and Rabbi Dr. Schloss founded the Consortium. “The tenets of Judaism reinforce inclusive education: respect for each individual and individual differences, patience, and respect. The Torah teaches us that we are all created B’zelem Elohim—in the Divine Image. Participating in meaningful ways in Jewish life provides quality of life.”

Simon continues, “We learned to ask families how they view the role of the synagogue in their lives, which is in a way family-centered planning. Jewish education fulfills needs helping a child participate in rituals at home, defines who he or she is, and encourages participation in congregational life and the larger Jewish world for their entire lives.”

The Consortium meets annually to share best practices and to discuss challenges and opportunities. Members share teacher training models and new strategies to teach and reach children with a variety of different learning styles, learn how to develop parent support programs and how to use the latest technology to enhance learning opportunities for children with special needs. Consortium members also participate in a listserv so they can ask each other resource and procedural questions and communicate answers to the entire group. The Consortium members also provide leadership to Jewish communities. This year the Consortium initiated the first national Jewish Disability Awareness Month in February to encourage communities, agencies, and organizations to raise awareness on a broad scale. In previous years, some communities held conferences to bring the issue to their members.

Recently, experts in the field of Jewish special education and inclusion talked about the impact that inclusion in Jewish life has for children, their families and service providers. Although there were a few programs even 30 years ago, inclusion of children with disabilities in synagogues and schools has now become a priority in many Jewish communities. Experts agree that collaboration between parents and professionals is the key to providing meaningful and appropriate experiences for children with disabilities.

Including children with disabilities in religious education, bar and bat mitzvah training, and youth groups was not standard in Jewish communities when Simon was the first director of the Special Needs program at the Board of Jewish Education of Greater Washington (later the Partnership for Jewish Life and Learning). Many of the programs started because parents expressed frustration that their children were not welcome in the existing programs. Used to inclusion in the public schools, parents wanted their children to have the same consideration from their synagogues and religious schools.

Deborah Gettes directs the Special Needs program for the Auerbach Central Agency for Jewish Education (ACAJE) in Philadelphia. “My program started 17 years ago when doors to religious schools and synagogues were closed to children with special needs. They were not allowed in religious schools and preschools. So we opened resource rooms and hired special education teachers. But it takes more than that.”

Three years ago, Gettes conducted surveys for both synagogue religious schools and preschools to determine the kinds of special needs the students have, the level of training of the teachers, and the needs of the families to help make the students more successful. A second survey accessed the needs and expectations that parents had for their children’s Jewish education. Because of this information, Gettes has started several important programs that can be replicated in any faith community.

“We train high school students to work with kids with special needs in the classroom. The Teen Assistant Program (TAP) is five years old, and we start a new class each school year. Each teen receives 42 hours of training and is able to help the classroom teachers with academics, behavioral and social issues, advocate for their students, and communicate with parents,” Gettes said.

TAP yields benefits for the child with special needs, the classroom and the teen assistants. A TAP participant wrote after one of the training sessions: “This past week has really changed my perspective on people. I used to look at people with learning disabilities and not really know what to do. I always wished that I could help them in some way, but, until now, I didn't know how. The TAP program has taught me to be patient, caring, and helpful to people with autism, Asperger syndrome, attention deficit hyperactivity disorder and Down syndrome.

Shelly Christensen, a parent and the Program Manager of the Minneapolis Jewish Community Inclusion Program for People with Disabilities recalls when her child attended religious school, “The director of the program made a point of getting to know him and our family. She understood that we had goals for our son—to complete religious school, prepare for his bar mitzvah, and be confirmed. It happened—with support. We had a good partnership, mainly because our team was committed to working together.”

Linda Zimmerman is the Director of The Amit Program in Atlanta. In her experience, she has discovered that “the only barriers to access for all children to their Jewish heritage and traditions were the attitudes of others. When a community makes a decision to be inclusive, anything is possible. Teachers can be educated; students can be peer mentors.” Zimmerman adds, “Some children need individualized instruction to participate in a bar or bat mitzvah ceremony, but with flexible clergy, accommodations can be made without stepping on religious boundaries to meet the child’s individual abilities.”

If I am for myself, what am I?

Children with disabilities are entitled to have a sense of identity as a member of their faith community. A Jewish education can validate a child's sense of self. In Boston, Gateways: Access to Jewish Education is committed to ensuring that a child’s disabilities not be a barrier to receiving a Jewish education and having a place at the Jewish table. By acknowledging the child’s role in Judaism, the second of Hillel’s questions is answered.

Gateways is a model of possibilities, creating educational choices for children and giving families the chance to participate in Jewish life to the fullest. In the last few years, increased awareness and community commitment have expanded the possibilities for these students. Gateways serves more than 60 children from 30 communities in Massachusetts and Rhode Island. They also support 125 students with milder needs in Jewish day schools.

Arlene Remz, Gateways’ Executive Director, says, “It’s exciting each time we speak with a family, particularly the ones with children who have severe special needs. These families have traversed multiple issues of medical needs and secular schooling. By the time they get to Jewish education, they are exhausted.” When parents call the office and hear the programs available, Remz says, “They are so happy to have this opportunity. Some parents never imagine their child could have a bar or bat mitzvah.”

At Gateways, Josh, an adolescent who has autism and is non-verbal, had a unique and meaningful ceremony. Josh’s siblings prerecorded blessings for the ceremony. Josh was able to come to the Torah by himself and gave his d’var Torah (commentary), pushing the button activating a PowerPoint presentation.

Remz says, “Often guests arrive at a Gateways’ bar or bat mitzvah not knowing what to expect. When they see the student’s level of participation and understanding of what they’ve accomplished, there’s often not a dry eye in the room.”

Gettes recently completed a survey for a school in Philadelphia. She interviewed teachers who expressed the need for continued in-service learning opportunities to help identify children’s learning needs. Parents do not want “inclusion” if it means babysitting their children. Inclusion is good if it is meaningful, if children are learning.

If not now, when?

Christensen explains that when your child has a disability, everything operates with a sense of urgency. The time was always now to talk about accommodations for her son. The education director, of her own volition, met with him to help him write his confirmation speech. She asked him many relevant questions—talking was not a challenge for him but writing was. From his answers, he wrote a meaningful and thoughtful speech.”

Zimmerman commented that “without Amit’s programs and the advocacy they have done in Atlanta, hundreds of children would not have meaningful access to their Jewish faith. The clergy and the administration of the synagogue set the tone for the congregation. A rabbi that stops the service because a baby cries or because someone is walking around is teaching their community that we must all fit into the same mold. On the other hand, one that ignores the young man who paces throughout the service or the woman who has occasional vocal outbursts is teaching members that we are all unique.”

The biggest challenge expressed by professionals is helping parents feel comfortable talking about their child’s needs. According to Gettes, “Some parents are still hoping that their child will somehow be a “normal” kid and may deny the reality of their child’s special needs.” Christensen adds the parent perspective. “I was unsure how much I could disclose to the school because I wanted them to see my son’s strengths, not his disability. I did speak up, finally, because it was my role to ensure that he was included.”

Educators echo this sentiment. Remz says, “Parents need to advocate, advocate, advocate!”

Zimmerman adds that “parents need to understand that not everything will change at once and that not everything will change. A parent who is able to hold their emotions in check and work slowly toward their goal will be more successful.”

Christensen explains that it takes collaboration from parents, teachers, administrators, and rabbis. The culture may need to change so that people with disabilities are embraced as members of the community—not as “them,” but as part of “us.” When we put our own interests first it means leaving someone outside of the community because they can’t take the stairs to a second floor class, learn to read or write Hebrew, or sit still. As a synagogue community we have to examine our values. To paraphrase Hillel, “What are we if we are only for the easiest to teach and reach?”

Hillel lived over 2000 years ago. But his questions encourage us to ask ourselves what we can do to broaden religious education and inclusion. Once we know what we must do we can commit to inclusion in our religious schools and faith communities. We are not whole until all of us belong. And if not now, when?