‘Nothing About Us Without Us’

Diversity and inclusion have become watchwords in our Jewish community, and rightly so. In the past few decades, we have considered how our congregations and institutions can better serve the needs of various populations, among them women, LGBTQ people, Jews of color and interfaith couples.

Now, a new survey from the nonprofit advocacy group RespectAbility shows — as we suspected — we have made progress but we still have much work to do in how we create more space in our communal life for people with disabilities.

The poll, funded by the Genesis Prize Foundation and others, surveyed thousands of Jewish respondents, some who self-identify as disabled and others who do not. While fully one-in-four adults has a disability, only 12 percent of Jewish respondents report knowing any clergy member or staffer at a Jewish institution with a disability. Less than a fifth of respondents say that our institutions are doing “extremely well” or “very well” at including those with disabilities in communal activities.

Fully one-third of the respondents say that the biggest barrier to more inclusion of Jews with disabilities results from stigma or unacknowledged prejudice. A plurality say that synagogues have to take the lead in encouraging the participation of disabled people in our communal life.

Respondents who point to synagogues as the first line of defense against ostracism of the disabled reflects a struggle that synagogues face on many fronts. A synagogue’s visible presence in the community and central role in the Jewish psyche mean that we all bring many and sometimes sweeping expectations to those institutions. At the same time, religious institutions are ineligible for most of the public funds available to make institutions compliant with the Americans with Disabilities Act, or ADA.

Accessibility is also overlooked by Jewish philanthropists who prefer to fund what they perceive as new and fresh ideas. This makes certain accommodations, especially much-needed but expensive brick-and-mortar renovations for accessibility, that much harder to achieve.

But addressing these issues can only come through concrete steps. Disabilities advocates suggest we give disabled people a more visible, active role in religious life. They remind us of the mantra “nothing about us without us” — that is, people with disabilities need to be at the table from the beginning of any planning process. They want to work with institutions to solve issues and make the Jewish community open and welcoming to all.

Creating a more representative and inclusive community means recruiting more disabled people for committees and boards, as well as for professional positions. It might mean asking someone with an intellectual disability to volunteer as an usher at Shabbat services, or offering an aliyah to someone who uses a wheelchair. There are ample resources that rabbis and other faith leaders can use to learn more about disability inclusion, including specialized toolkits for the synagogue.

Our community’s focus on achievement can seem praiseworthy, but it can also be very damaging to people, especially the young, who are experiencing depression, anxiety and mental illness in increasing numbers. The RespectAbility poll finds that mental health issues affect Jewish families in numbers similar to national averages: 21 percent of respondents report that either they or a member of their household is grappling with a mental health challenge. Particularly when it comes to mental illness, which is often invisible, the Jewish community ought to investigate how our focus on achievement and even perfection, combined with unspoken stigma and biases, are affecting our kids.

This becomes a particularly important issue in day schools. Our religious day schools are exempt from the ADA and the Individuals with Disabilities Education Act. This near-total freedom from secular legal obligations has significantly impaired a robust and creative response to inclusion. Many Jewish families’ affiliation with day schools ends when schools are unable to accommodate their child’s disability, and when families are told that the student would be better served elsewhere.

Concrete steps also include advocacy. Fifty percent of disabled respondents to the RespectAbility poll cite as their top priorities the preservation of safety net programs such as Medicaid, disability insurance and other forms of health care access. Another quarter of respondents with disabilities said their greatest concern is the expansion of educational and employment opportunities. And more than two-thirds of disabled respondents say that it is “extremely important” or “somewhat important” for them to hold down a job.

Securing these opportunities for Jews with disabilities — and all Americans — is a task that, like the fight for Medicaid, has to engage our community’s advocates not only in Washington and in state capitals everywhere, but also in our community’s own agencies and institutions.

We are now emerging from the High Holy Days, a time when we contemplate the past year, look forward to the next one and consider how we can be more connected and compassionate members of our Jewish and human family. RespectAbility’s findings can help spur a renewed and more precise focus on the needs and narratives of Jews with disabilities.

Rabbi Julie Schonfeld is CEO of the Rabbinical Assembly, the worldwide organization of Conservative/Masorti rabbis. This article first appeared on JTA.org.