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sermon resources: D: Diane's story

Inclusion in the Jewish Community: Dianne’s Story
by Rabbi Dianne Cohler-Esses, Scholar-in-Residence, UJA-Federation of New York

 

“[P]articularly the stranger in all her or his difference, who, because we were strangers in Egypt, deserves special goodness for life or at least until the end of strangeness.” —Grace Paley, “Midrash on Happiness”

It is a truism that people are uncomfortable with those who are profoundly unlike them. Of course. We all are. We move away from the person on the street who yells obscenities to no one in particular. We stare at those who are disfigured. Walking down the street, the person marked by burns or missing limbs catches my eye. I look with fascination, repulsion, sympathy, fear and curiosity. What is it like for them to be so disfigured? What would it be like for me? Would I be able to, like them, go out into the world each day, show my disfigured face to the world, and function?

My son, Eli, has a significant impairment. As a parent of a child with special needs, I am faced daily, in my most intimate sphere, with profound difference. These differences are not of the bodily variety—there is no external disfigurement. In fact, Eli is a most beautiful child. Rather, it is the sort of impairment that manifests developmentally, behaviorally and socially.

Some of these differences are quite charming and not so personally challenging. When my son, for example, meets someone named John, he, a Beatles lover, will ask them, “Are you John Lemon” (he means John Lennon). Others are interesting: “When will be the end of Eli?” he asks often, preoccupied with death. “Is this the beginning of Eli, the middle of Eli, or the end of Eli?”

Eli doesn’t have the same social filters other children his age have, filters that come from knowing what’s appropriate to say, when and to whom. Furthermore, for him, there isn’t always a sharp line between reality and fantasy, between story and day-to-day existence. When a stranger on the train asked him what he wanted to be when he grew up, instead of saying something typical, like wanting to be an astronaut or some such dream grounded in a modicum of reality, Eli excitedly replied, “I want to fly like Icarus into the sun!” These are the moments I delight in my son, and I can pretend that he doesn’t have disabilities at all. Rather, I say to myself: He’s a quirky kid. He’s imaginative. He moves to the beat of his own drum.

But there are other moments that don’t allow me to be so closeted from—and in denial of—my son’s disabilities, times when I feel like cringing and wish the floor would swallow me up. Like when he begins to rock back and forth for no apparent reason in public; or when he touches another child inappropriately, not understanding the impact of his touch. Or when he lays on the floor, or begins to crawl. These are the differences I am ashamed of. These are the differences I wish would go away. Not only for his sake, but also for my and my family’s.

A traditional Jew and a rabbi, I continually search sacred text for support and guidance in how to deal with the difficult fact of my son’s disabilities. Why did this happen to him, to us as a family? To those questions, I find no answer. Certain sacred narratives, however, allow me to shift from “Why me?” to “How do I understand it?” The primary and most relevant teaching I find is that we are all created in the image of God. Eli then, according to Genesis 1:27, is, exactly as he is, a reflection of the Divine Creator. In fact, his full name, Elichai, means “my God is living.” The more comfortable I become with my son’s “different” behavior, the more I come to understand another aspect—another, so to speak, face of God. This practice has borne fruit. Not only does it allow me to love my son more fully, but it also allows me to carry inside me an understanding that preserves his dignity as well as my family’s dignity in the face of those who are visibly uncomfortable or repulsed by him. Indeed, the more I am able to accept him as he is, and love him as he is, the more my own sense of self as created in the image of God deepens and expands. From a divine perspective, the whole person, including his or her disabilities, reflects God as much as any other person does.

Disabilities, with the rest of human being, are, from a Godly perspective, simply divine. However, as powerful and transformative as these texts are, our community is not yet informed by these guiding texts. For many parents of children with disabilities, community can become the very occasion for the most acute pain. In community, difference and discomfort often become exclusion, and not because others mean to exclude. To give a personal example, there are no other children in my synagogue community who would, at this point, naturally seek out a play date with my son. Families with “normal” children of the same age invite one another over so children can play and adults can talk, but my family has not yet been figured into that equation. This is not malicious, and it actually, on some level, makes sense—my son, at this point, does not know how to play appropriately with his peers. But it yields the unwitting exclusion of our family from certain webs of connection. Or at least I experience it as such. And this exclusion can be painful for families like mine who yearn for their community to be their home, despite disabilities, despite differences, despite discomfort. How do we, as a Jewish community, begin to address this, the fact of strangeness in our midst?

I believe we need to start by asking a range of questions—religious, personal and communal. How does each of us feel about disabilities, physical or otherwise? How do we then respond? What might we learn about ourselves from contact with others who have disabilities? How might we see the world differently if we consciously begin to use the lens that each human being is created in the image of God?

Might families with children or adults with disabilities feel excluded or alienated in your community? How can you find out? Are you willing to talk with those families to find out, or perhaps invite them over for Shabbat? Are you willing to ask yourselves, as members of a community, how profoundly uncomfortable you are with these differences and how you respond, given that discomfort? Are children with disabilities welcome in a children’s service? In an adult service? Are adults with disabilities fully integrated into services? What resources does a synagogue need to ensure that every family member is included as much as possible?

How do we, as a Jewish community, begin to address this—the fact of strangeness in our midst? Religiously, this is crucial: the Jewish system of mitzvot, one can say, turns on the axis of memory, the memory that we were, each one of us, strangers in a strange land. As it is written in Devarim 10:19, “And you shall love the stranger, for you were strangers in the land of Egypt.” And with this injunction, turn to the strangers in your midst and you, too, will be brought closer to the face of God.