The Torah teaches us that Moses’s speech disability did not disqualify him to lead 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 that he spoke with a stutter or lisp. In response, God affirms Moses’s 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, 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 to do this is through person-centered thinking, which is 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, including religious and nonreligious spaces. The Learning Community for Person Centered Practices is a great resource to learn more.
How I Became an Activist Parent
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 age four 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 his first day of kindergarten.
Our hopes 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 she 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.
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.
Our synagogue’s religious school at Bet Shalom 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 syndrome”—he was just Jake.
Inspired by the simplicity and ease with which Bet Shalom 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 these organizations to establish a board of lay representatives from each one. These representatives accepted the responsibility for leading internal inclusion initiatives. We met monthly to support each other, share challenges and successes, and encourage each other. Many of these leaders chair inclusion committees. Many of them have disabilities themselves or have family members with disabilities.
In thirteen years, much has changed as 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 JCC and attend adult education classes. People with disabilities serve on boards and participate in synagogue services.
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.
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. As a result I have often heard Jewish people say, “We don’t have any people with disabilities in our community because there aren’t any.” However, Jews are affected by the incidence of disability too. About 56.7 million people in the United States—approximately 19 percent of the population, according to the U.S. Census of 2010––have some kind of disabling condition. While no studies have been done to determine the exact incidence of disability within the Jewish community specifically, the increased demand for participation by people with disabilities in Jewish life indicates the need for inclusion. People with disabilities exist within all religious groups and collectively represent the largest minority in the United States.
A Broader History of Struggle
Some of the contemporary attitudes that contribute to the marginalization of people with disabilities are an outgrowth of previous attitudes and practices in this country. In the first half of the twentieth century, people with disabilities were often forced to live in large state residential treatment centers. Doctors counseled parents that these institutions would provide the best life for a child with a disability. Parents were often advised to forget about their children with disabilities and take care of their “healthy” children instead.
Some parents refused to institutionalize their children but still raised them in isolation and shame. In many Jewish communities, disability was considered a shonde, or a shame upon the family. Once when I was giving a presentation on the Minneapolis Jewish Community Inclusion Program for People with Disabilities at a synagogue, an older man approached me with tears in his eyes. He told me about his son, now grown, who was not welcome to attend religious school, have a bar mitzvah ceremony, or be involved in any way in Jewish activities. His sense of shame and embarrassment came not from his own expectations for his son, but from the Jewish community, which refused to allow his child in its institutions.
Rachel Simon, the author of the New York Times bestsellers The Story of Beautiful Girl and Riding the Bus with My Sister, shared this recollection about her family’s experience with her sister Beth, who was born with a developmental disability:
As happened for so many children with intellectual disabilities in the early 1960s, the course of my sister’s—and therefore my family’s—life was set right after we received a diagnosis. My parents, who had firsthand knowledge of the dehumanizing world of institutions, refused to listen to the authorities and decided to raise her at home. They did not experience the sense of shame so familiar to other parents in that era. As a result, my sister grew up within a loving family, believing she belonged in the world and had the same rights as all of us. Throughout my life, I’ve thought about the other children who were not as lucky. Their parents were bullied by their community’s pressure to have ‘perfect’ sons and daughters, the kind who go on to become doctors and lawyers, and who hide anything else from their neighbors. Once I asked my father how he thinks they avoided that pitfall. He said, ‘Like any Jewish father, I wanted my children to achieve. Then I had Beth, and I realized I wanted them to be happy. That became the goal.’
In the late 1940s, a small number of frustrated parents around the country organized to fight against the poor living conditions in residential institutions for people with disabilities. This eventually led to the dismantling of large residential centers and the deinstitutionalization of their former inhabitants. Parents also challenged the underlying attitude behind institutionalization—the idea that people with disabilities could not contribute to society. After years of silence, families began to speak about their loved ones with disabilities.
In 1950 a small group of parents and other concerned individuals came together to advocate for change for children with intellectual disabilities. This group formally organized at the National Association for Retarded Children or “Arc.” (The word “retarded” is no longer used to describe people with intellectual disabilities and was removed from this organization’s name in 1992.)
According to The Arc:
It was common at that time for doctors to tell parents that the best place for their child was in an institution. Emboldened by their collective desire to raise their children in the home and their stubborn refusal to accept that institutionalization was the only option, The Arc’s founders fought even harder. Like every parent of any child, they wanted more for their children. They wanted their children to lead fulfilling lives out in the community and not shuttered away in dark institutions.
The Arc opened a government affairs office in Washington D.C. in the 1960s and urged Congress to pass the Education of All Handicapped Children Act, which later became the Individuals with Disabilities Education Act in 1975. It also advocated for the Americans with Disabilities Act in 1990. Public schools were mandated by the Individuals with Disabilities Education Act to provide a free appropriate public education in the least restrictive environment. The Americans with Disabilities Act provides civil rights protections to individuals with disabilities similar to those afforded to individuals on the basis of race, color, sex, national origin, age, and religion. This piece of legislation ensures equal opportunity for individuals with disabilities in employment, public accommodations, transportation, state and local government services, and telecommunications. In this way people with disabilities won access to services that would enable them to live less restrictive lives in the community.
Toward Jewish Community Inclusion
Within the Jewish world, educators such as Dr. Sara Rubinow Simon have advocated for inclusion in Jewish schools. “I feel gratification that significant changes have taken place in Jewish communities across North America during my years of involvement,” Simon has said. Jewish special education departments in Los Angeles and New York and programs such as Sha’arim in Minneapolis, Keshet in Chicago, and Amit in Atlanta were founded in the 1990s to support day and congregational schools to educate Jewish children with disabilities.
According to Arlene Remz, executive director of Gateways in Boston, several organizations were also founded in 1999 to address different educational needs and supports. Etgar L’Noar provided Jewish education in a Sunday program and b’nei mitzvah program for students with more significant disabilities. The Jewish Special Education Collaborative provided supports to students with special needs in day schools. The Board of Jewish Education, funded by the Combined Jewish Philanthropy, provided professional development, grants, and advocacy, primarily in supplementary schools and preschools. In 2006 Etgar L’Noar and the Jewish Special Education Collaborative merged to form Gateways: Access to Jewish Education. In 2009, funding for the Board of Jewish Education program was transferred to Gateways to create a central special education agency.
However, some day and congregational schools continued not to allow children with disabilities to attend. Special education was costly. Some schools asked parents to pay for services. Others feared that there would be an onslaught of children with disabilities. Some decided that educating children with disabilities was not in their wheelhouse.
Now that Jewish education was becoming a possibility, parents began to push for Jewish youth groups and camps to include children with disabilities, as well. The Camp Ramah Tikvah program is designed for Jewish adolescents with learning, emotional, and developmental disabilities. According to the group’s website, “All of the campers come to camp for the same reasons: to have fun, make friends, and learn about Jewish things. They are included with their non-disabled peers throughout the day.” These days, many Jewish day and overnight camps, including the Sabes Jewish Community Center in Minneapolis and the Union for Reform Judaism camps, also have specialists to support staff to include campers with disabilities. Since the early years of the twenty-first century, adults with disabilities have also become more visible as Jewish institutions created special programs to provide them with opportunities for Jewish experiences in the form of regular monthly meetings or holiday projects, such as planting seeds for Tu B’Shevat. In many Jewish communities, updated versions of these programs continue to offer opportunities for adult education, social groups, and group attendance at holiday programs at synagogues.
Inclusion, however, is more than merely having a Jewish experience. Inclusion means belonging, participating, contributing, and making choices about one’s own Jewish life.
In 1990 a group of individuals with disabilities started Self-Advocates Becoming Empowered (sabeusa.org), a group that describes itself as working “to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends; and to learn from their mistakes.” This vision of self-advocacy can be put into practice through the person-centered thinking practices developed by researcher Michael Smull, the chair of The Learning Community for Person Centered Practices (learningcommunity.us). Person-centered thinking recognizes that individuals (not outside professionals) are the experts in their own lives and can have positive control over the lives they desire and find satisfying. Under this model, individuals are recognized and valued for their contributions (current and potential) to their communities and are supported by a web of relationships within their community.
An example of the power of person-centered practices can be found in the experience of a former bar mitzvah student of mine who demonstrated a remarkable ability to recall his Torah reading by listening once to the recording I made. This student was considered legally blind and had thus far not been very successful in learning to read Hebrew. His musical recall became a turning point for him as we shared his ability with the cantor and the music director. We learned that in addition to his ability, he wanted to learn how to play the piano so he could play the Jewish music that he loved. Because we were focused on what was important to this young man, we were able to support him to attain his goal of playing the piano. We learned that he could play the piano by ear. From there he was able to advocate for piano lessons, learning to read music and expanding his repertoire. He now plays piano in the community at events and has a gig at the Jewish Community Center playing a pre-Shabbat concert each week. Had we not listened to this young man and supported him to have positive control over his life, I wonder if he ever would have discovered his musical gift, which he now shares with his community.
Person-centered thinking seeks a balance between what is important to a person, based on his or her own individual definition of “quality of life,” and what is important for a person, including health, safety, and feeling valued as a contributing member of society. In this way the practices of self-advocacy and person-centered thinking offer a way to plan with people with disabilities rather than planning for them.
In the context of a religious community, successful inclusion can only be achieved when services are tailored to meet individuals’ particular hopes, thereby enabling them to shape the terms of their religious participation. The Mishnah Sanhedrin 4:5 teaches: “A human being mints many coins from the same mold, and they are all identical. But the Holy One, Blessed be God, strikes us all from the mold of the first human, and each one of us is unique.” Let us honor and respect that uniqueness, not by offering one-size fits all programs for people with disabilities, but by creating authentic and caring partnerships with them so that they can shape their engagement with religious institutions and live meaningful spiritual lives.
(This web-only article is part of a special series associated with Tikkun’s Fall 2014 print issue: Disability Justice and Politics. Subscribe now to read these subscriber-only articles online, and sign up for our free email newsletter to receive links to future web-only articles on this topic, as well! Visit http://www.tikkun.org/disability to read the other web-only articles associated with this issue.)