by Rabbi Jeremy Kridel
From the Autumn 2017 issue of Jewish Currents
“WE DON’T REALLY think we can do that.”
So ends my wife’s phone conversation with staff at a Jewish camp and after-school program. What they could not do was include our son, then 8, in their activities. They were unprepared to provide services for an autistic child.
My family’s story is hardly unique, either to us or to the Jewish community. In 2014, Sheri Dacon and her husband were informed by a children’s minister at their church that their autistic son could not attend Sunday School without being accompanied by one of his parents. That same year, the pastor of a megachurch explained to a parent that the church had no plan for accommodation or inclusion because “We just don’t have any kids with significant special needs.” In 2011, a child with cerebral palsy and his family were moved to another part of their church after the child responded to a prayer in a way that other congregants found distracting. In 2008, a Catholic diocese obtained a court order barring an autistic child from church because of disruptions.
Most such events do not make headlines, but one at a time they can drive people from community life. Being able to get in the door — and getting in the door is what the Americans with Disabilities Act has been best at achieving — is only the beginning. You have to be able to stay and participate.
Imagine the following scenarios from the standpoint of an individual with disabilities:
• A large auditorium in a Jewish community center has no assisted listening system for individuals with difficulty hearing;
• Seats in a community gathering room are placed in long, tight rows with little access to aisles;
• Lights in a community room are always very bright. The room’s linoleum floor causes sound to echo off the walls, made worse by the pole-mounted speakers used to amplify the music and microphones.
For many people, such situations are not exclusionary. Lots of public places are too bright; lots of them have bad sound and packed seating. But consider the issue of excessive light from the perspective of an autistic person: “If I get sensory overload I just shut down,” one individual told the National Autistic Society of Great Britain. “You get what’s known as fragmentation
. . . it’s weird, like being tuned into 40 TV channels.” Overstimulation for some persons (and under-stimulation for others) can result in the individual suffering a meltdown, with sensory input and responses becoming overwhelming and impeding one’s ability even to communicate that something is wrong. “When an autistic person is having a meltdown they are unable to think clearly,” explains the pseudonymous blogger “Anna” at Anonymously Autistic: “The flight-or-fight response is triggered.”
Imagine the embarrassment that comes from a meltdown in a very public place — for the autistic person, for the person’s family, and for those around them. And if a child has a meltdown, attracting disapproving attention from others, what message is conveyed?
Answer: You’re not welcome here.
IT HAS BEEN a major struggle for organized Jewish communities in recent years simply to get people in the door and to keep them once they arrive. Recent experimentation with the synagogue dues system and financial structure is among the responses to this problem. But there have also been efforts to rethink how Jewish communities might form and function: how they view and greet newcomers, how they work to bring newcomers into the community, and how they provide the sense of purpose that many Jewish communities have failed to convey.
Many of these initiatives have been post- or cross-denominational, coming through organizations such as the Synagogue Studies Institute or Clal/Rabbis Without Borders. They place a renewed emphasis on the synagogue as a spiritual center, rather than as a social center. New, more effective ways to engage newcomers are given attention — Rick Warren’s Saddleback Church and other evangelical megachurches are often used as models to emulate, with an eye toward turning one-time visitors into regular community members. And there are free-wheeling approaches used by less traditional Jewish organizations such as Moishe House, Ikar, The Kitchen, and Svara.
All of these new efforts seek a “spirituality of welcoming,” to use the title of a book by Rabbi Ron Wolfson, and each endeavors to ground itself in Jewish “stuff”: Jewish texts that present mitzves or ethical concepts; khasidic stories that seem to emphasize openness to different approaches to Jewish life; social or community service events that mix in a bit of text study. Another book by Wolfson, Relational Judaism, suggests that we assess our success in terms of how we use Jewish identification as a reference point for how we create relationships and live the rest of our lives. Wolfson observes that synagogues are frequently “good at the head” but need to “get better at the heart.”
But even of these new approaches, few expressly contemplate the place of disability or minority groups in their communities. Relational Judaism, for example, includes no discussion of disability, just one or two references to race, and only a few references to LGBTQ Jews. What does it say about efforts to engage all comers when the sources to which many communities turn for engagement-and-growth strategies do not address themselves to the full diversity of North America’s Jews? How much are we losing, in terms of the benefits of diversity, when we fail to ensure that we have inclusive communities?
I can’t imagine bringing my son to most of these new Jewish enterprises. And if I, a rabbinical student, can’t imagine my son feeling as though the doors were open to him, I have to similarly conclude that they might be closed to me, too. How will my son find a way in if I don’t bring him with me, and how can I stay when he cannot?
NONE OF THESE HARMS are intended. Sometimes they come about through expectations of “normal” behavior and abilities. Often, in other words, the problem is one of decorum: “For some people with disabilities,” writes Julia Belser in her Guide to Jewish Values and Disability Rights, 2016, “the unwritten codes of propriety that govern many synagogues and Jewish institutions remain pernicious barriers to a sense of genuine, inclusive welcome. Implicit paradigms of decorum govern the spaces in which we live — ideas about how people should signal their respect, participate in public events, or demonstrate their spirituality.”
Such “unwritten codes of propriety” cut strongly against the possibility of Jewish spaces being inclusive. What’s worse is that those leading the charge to innovate and revive Jewish communal life are failing to give the full range of Jewish persons an explicit place in their work.
There is no single solution, and some things have already changed: there is a Jewish Disability Awareness and Inclusion Month each year in February. Several areas in the United States with large Jewish populations have seen the emergence of programs aimed at individuals (especially children) with disabilities. In the philanthropic world, the Ruderman Family Foundation has begun to make large grants to certain Jewish organizations (most notably the Union for Reform Judaism and Chabad Lubavitch) in order to develop inclusion programs.
These are worthy initiatives. The problem these programs pose is that they are, in essence, add-ons to existing Jewish organizations and practices. But inclusion cannot be effective if it is viewed as an add-on.
We find ourselves talking about “special needs.” When we employ such a term, however — or when, within the context of the Americans with Disabilities Act, we talk about providing access as a form of “accommodation” — we are normalizing one way of being — not disabled, not autistic, not diagnosed with ADHD, not whatever — over other ways of being that are rendered somehow pathological. After all, the needs served are “special,” and demand additional steps that we might not otherwise have taken.
But the true opposite of exclusion is not accommodation or special needs: it is inclusion. Inclusion takes many forms. Real inclusion means an approach to community life that assumes that all events and programs should involve persons with disabilities and neurological differences. It means implementing principles of universal design so that inclusion is seamless and everyone benefits from the changes we make. Think about curb cuts, the places on street corners where a ramp has been put it, as an example of universal design: the ramp was put there for wheelchairs, but a delivery-person with a cart or a parent pushing a stroller benefits, too. What we do to benefit one set of needs can benefit everyone. It is a long-term approach to community life — not a trendy mitsve or tikkun olam project.
Rather than congratulate ourselves for holding a single shabbes service with an American Sign Language interpreter, we should be planning and budgeting with a wide range of needs in mind. If we are committed to ensuring full participation for all our members, fulfilling that commitment requires taking into account what people need to participate — not because the needs are special, but because we care that each person has what they need.
Perhaps most important of all, inclusion demands that we let those whom we previously have excluded take the lead in telling us how to create an inclusive environment — and that we heed what we are told. We must change not only what we do in our communities, but how we think about each member’s needs. Why bother to include? First, because it’s simply the right thing to do. As a Secular Humanistic Jew, if I am to adhere to my ideals, ensuring opportunities for self-actualization and community involvement is a necessity. And even if I were only concerned with having full access when I personally need it, I would be compelled by the principle of reciprocity to ensure inclusion existed for others.
Beyond that, however, real inclusion serves an important community development function. If my son cannot be included in a community activity, I cannot stay either. Or, if we are treated in a way that makes us feel unwelcome, why would we want to stay? How many times, do you suppose, might we experience this before I simply stop trying to be involved in a community’s life? Once? Twice? Three times?
In a world where Jewishness has become an optional piece of many Jews’ identities, can we expect people we reject — even accidentally — to return? And with a generation of new parents who insist upon integrity in their Jewish community and identity, should we expect people to join our communities if we are not planning for their needs?
I believe the answer to the last two questions is a resounding “no.” And given the challenges of attracting and retaining new members to enable secular and humanistic Jewish communities to thrive, “no” is an answer we simply cannot afford.
Rabbi Jeremy Kridel is serving as rabbi at Machar: The Washington Congregation for Secular Humanistic Judaism in Washington, D.C., and anticipates rabbinical ordination through the International Institute for Secular Humanistic Judaism in November 2017. He is also co-editor of Humanistic Judaism and has previously worked as an attorney and educator.