When our son was a newborn, another mom of a child with Down syndrome suggested that we see “Praying with Lior.” Deeply moved by the movie, I turned to my husband and told him that we needed to find a synagogue so that our Julian would have a faith community that knows, loves and supports him. We were not interested in “tolerance” or even “acceptance.” We wanted to be part of a congregation that celebrated difference and embraced members with disabilities as part of its fabric.
Our close friends had recently joined Temple Micah and relayed a story of a mother leaving her son, who has complex and severe disabilities, in a child care room at the synagogue. The little boy’s mother, anxious about leaving her son, asked one of the women there if she minded that her son wasn’t able to speak; the woman, already holding the little boy and rocking him in a chair, replied that she didn’t mind if the mom didn’t. My friend knew that we’d be at home there.
And so we began our congregational journey at Temple Micah: a place of inclusion with no exceptions. When I initially requested additional information on the temple’s web site explaining that we were an interfaith family who had a child with Down syndrome and probably didn’t fit into the traditional mold, I received an email within hours from the temple’s board chair saying something to the effect that Micah specialized in non-traditional families and that he would put me in touch with others who could demonstrate this to us. I learned that not only were non-Jewish spouses welcomed by this community but we were celebrated with a blessing on Yom Kippur that honored our commitment to raising our children in the Jewish faith.
Our family’s other main concern was the inclusion of our youngest son, Julian, in Jewish education. We met with education director and she graciously offered that she had never had a child with Down syndrome in the education program but, with our guidance, would do everything she could to support Julian in becoming a bar mitzvah.
Temple Micah has a long and storied history as a part of the Civil Rights movement in Washington, D.C. Social justice is a cornerstone of the synagogue’s philosophy and fabric. Two years ago, my friend and colleague Ari Ne’man spoke at Shabbat services in honor of Jewish Disabilities Awareness Month. In his talk, he reminded us that “you cannot be included if you are not welcome inside the same school or camp or synagogue as any other, but you are also not included if your participation there is a matter of charity, rather than one of right. Inclusion cannot come in a special program only for people with disabilities —the nature of the term is to be allowed in by the same door, with the same rights as any other participants … We make adjustments and accommodations, we add services and we individualize programs as necessary, but the point of what we are doing is not to create something special, it is to create something equal. Justice, not charity.”
The distinction between justice and charity is an important one. Charity, by its definition, is “generosity and helpfulness especially toward the needy or suffering, while justice is “the principle of moral rightness; equity.” Doing what seems good vs. doing what is right. Charity implies pity, which can be nothing more than compassionate discrimination. Justice, though, is action in the pursuit of equity. Temple Micah’s leadership and congregation understand this distinction and have taken the lead by translating words into action. One of those first actions for our family was a warm welcome into Temple Micah’s congregation.
Next year, Julian will begin religious education. We are not sure how that will look; the curriculum may need to be modified in order to make it meaningful for him. Necessary accommodations, though, are part of our pursuit of justice. The pursuit of righteousness must be pursued with righteousness. Tzedek, tzedek tirdoff!
Allison Wohl is the Executive Director of CPSD, a coalition of twenty-two national groups that advocates for the kind of comprehensive, innovative public policy reform that presumes the competence of all citizens with disabilities. She received her MBA from the College of William and Mary. After sixteen years in corporate America, working at big 4 consulting firms in their federal practices and at GE, she decided that she wanted to move to the public sector. Allison writes about systemic barriers to Americans with significant disabilities for various blogs as well as her own. Allison is actively involved in the Down syndrome advocacy community on the local and national levels. She is the mom of three boys, the youngest of whom has Down syndrome.