One Mom’s Fight Against Disability Bias

The Torah teaches us that Moses’ speech disability did not disqualify him from leading the Israelites out of Egypt.

In the Book of Exodus, when asked to lead the Israelites, Moses initially objects that he is “heavy of mouth and heavy of tongue” — a phrase that has led many rabbinic interpreters to assume he spoke with a stutter or lisp. In response, God affirms Moses’ many capabilities and notes that his brother Aaron can offer any support that Moses needs to fulfill his responsibilities.

As a parent and leader in Jewish community inclusion in Minneapolis, I have taken this story to heart, refusing to acquiesce to the marginalization of my son Jake.

I believe that Jewish communities must stop creating “special” programs that serve people with disabilities in segregated settings and, instead, support personalized efforts to enable people with disabilities to live full and meaningful Jewish lives of their own choosing.

One way is through person-centered thinking, based on what is important to someone, what is important for someone, and the balance between the two.

Person-centered thinking is supported by a set of tools such as communication charts, learning logs and individualized review systems that organizations can use to structure their interactions with individuals with disabilities. These tools can be useful in a variety of settings, and in religious and nonreligious spaces. The Learning Community for Person Centered Practices is a great resource to learn more.

As for my son, Jake is just Jake. He is articulate and funny. When he was younger, he met developmental milestones but had difficulty with transitions and cried when I left him at his day care center. At the age of 4, he told his preschool class that his favorite book was “Gone with the Wind,” even though he had never read the book or even seen the film. My husband, Rick, and I thought he was a bit quirky, but that did not alarm us.

As he stood on the bimah in his miniature cap and gown for preschool graduation, Rick and I proudly anticipated Jake’s first day of kindergarten.

Our hopes were shattered at Jake’s first public-school kindergarten conference. The teacher launched into a litany of Jake’s negative behaviors. Jake didn’t hold his pencil correctly, talked out of turn and bothered his neighbors. He ignored directions. One day he behaved so badly that the teacher had to keep the entire class in from recess. He was the class pariah. She said she left Jake alone in the room while the other kids had recess the next day. She had nothing good to say about Jake. I cried in the car on the ride home. My heart ached for Jake. I was angry.

While we are on the road to supporting people with disabilities to live self-determined Jewish lives like anyone else, we still have work to do.

After staying up all night ruminating, I decided that I wouldn’t allow anyone to wreck our dreams for our son. The next day I demanded that Jake be placed with a teacher who would value him and guide his learning. The new teacher understood that children learn and process differently. She built a trusting relationship with Jake, and she included me as her partner.

About 56.7 million people in the United States — 19 percent of the population, according to the U.S. Census of 2010 — have some kind of disabling condition.

Our synagogue’s religious school also partnered with us. The director understood the importance of Jewish education in Jake’s life and valued him as a member of the community. As Jake continued in religious school through his bar mitzvah, it became clear that in the synagogue he was not “Jake with Asperger’s syndrome,” he was just Jake.

Inspired by the simplicity and ease with which our synagogue honored Jake’s Jewish journey, I initially assumed that all people with disabilities could participate in a Jewish life of their own choosing, just like anyone else. But as I became more deeply involved in disability activism, I realized this is not always the case. Eventually, I joined Jewish Family and Children’s Service of Minneapolis to manage its innovative new Jewish Community Inclusion Program for People With Disabilities.

Working with parents seeking to make meaningful Jewish participation possible for their children with disabilities, the program has persuaded community institutions to become more inclusive and accessible. Early in the program, I met with all the rabbis, executive directors and boards to establish why the community was focusing on the inclusion of people with disabilities.

I worked with each of these organizations to establish its own board of lay representatives. These representatives accepted the responsibility for leading internal inclusion initiatives. We met monthly to support one another, share challenges and successes, and encourage one another. Many of the leaders — who have disabilities themselves or have family members with disabilities — chair inclusion committees.

In 13 years, much has changed. More people with disabilities have found better access and support. Many more children now participate in religious and day school classrooms with individualized supports.

Parents are seeing their dreams of a Jewish education — a bar or bat mitzvah, and camp — come true. Adults participate in fitness activities at the Jewish Community Center and attend adult education classes. People with disabilities serve on boards and participate in synagogue services.

Within Jewish communities, the deeply rooted belief that all Jewish children are destined to become academic successes is a barrier that shuts out some people with disabilities and disconnects them from Jewish life.

While we are on the road to supporting people with disabilities to live self-determined Jewish lives like anyone else, we still have work to do. In many communities, people with disabilities are still treated as fragile guests rather than as contributing members. Inclusion has to be a priority for Jewish institutions.

Shelly Christensen is an authority on Jewish community inclusion. This article was originally published on Tikkun.org.