February 7, 2008
The journey to inclusion
Seeing differences in our children poses cultural challenge
(Page 2 - Previous Page)In the days after Shmuel's birth -- after the genetic tests confirmed what the doctors all knew -- I found myself consistently trying to place Shmuel within categories. Knowing that he surely wasn't typical, I found myself relying upon the categories supplied by my well-meaning friends: he was "special"; he was "atypical"; he was a manifestation of pure din, of pure rachamim. It took me several years to realize that he may be some aspects of all of these things, but first and foremost, he was Shmuel.
Immediately after the birth, we were especially susceptible to what I now see as the not-so-well conceived advice of others. My wife and I had decided to conceal Shmuel's condition from our children. Within about an hour of our return home from the hospital, my oldest daughter, Elisheva, then 13, inquired quietly and matter-of-factly, "Does he have Down syndrome?"
When we answered in the affirmative -- we were both relieved that the charade had ended so quickly -- Elisheva disappeared mysteriously from the house, only to return 15 minutes later to pick up Shmuel and smother him in kisses.
Our second oldest daughter, Avital, then 8, wanted to know: "What is Down syndrome anyway?" After explaining what I then understood about the syndrome -- which was very little -- looking only half satisfied, Avital asked with quiet innocence, "Do I have Down syndrome?"
As parents, we may try to model behavior for our children, but the innocence of seeing without judgment of the latter incident, and the effort to see against habitual categories of the first, provided me with a model for beginning to see Shmuel.
It was at about this time that I came upon a famous story recounted in the Talmud (Ta'anit 20b): The tanna, Rabbi Elazar ben Shimon, upon returning from his teacher's house, was "rejoicing greatly" and feeling "proud," since he had "learned much Torah." As the story continues, Rabbi Elazar "chances upon a man," described as "exceedingly ugly." When greeted by the "ugly man," Rabbi Elazar responds: "Empty one! Are all the people of your city perhaps as ugly as you?" To this, the man replies: "I do not know but go and tell the Craftsman who made me, 'how ugly is that vessel that you made!'"
Having realized his transgression, Rabbi Elazar dismounts from his donkey, prostrates himself and says, "I have spoken out of turn to you; forgive me!" Not until implored by the people of a nearby city does the man agree to forgive Rabbi Elazar -- provided, the former stipulates, that "he does not make a habit of doing this."
Rabbi Elazar had been guilty of a visual transgression linked to habit: seeing the outer shell of the man instead of his inner essence -- thus the "ugly man" invokes the Craftsman that made him, implicitly arguing for his own connection, despite appearances, to tzelem Elokim.
According to some, the ugly man is none other than Elijah the prophet, who had come to make sure that Rabbi Elazar would not become "habituated to such behavior." There are different kinds of bad habits, some of the visual variety.
From the framing gesture of the aggadic story, it seems that Rabbi Elazar's attitude, his contentedness and pride in his learning, had contributed to that perceptual error. So Rabbi Elazar runs to the nearest house of study and expounds: "A person should always be soft like a reed and not hard like a cedar." He goes on to elaborate the legal consequences of the homily: "For this reason, the reed merited to have quills drawn from it to write Torah scrolls, tefillin and mezuzot."
A person should demonstrate the softness and flexibility of the reed, to be sure. The Torah provides the categories through which to understand the world, but those categories must themselves be applied with sensitivity and not arrogance.
When one is hard or inflexible like a cedar, the story implies, there is a possibility of perceptual transgression like that committed by Rabbi Elazar. Habitual ways of seeing -- the wielding of inflexible categories -- can lead to arrogance and insulate one from the genuine encounter with difference. The Torah, which can be written with a reed, contains the implicit injunction (this is the reason Rabbi Elazar runs to give a derash) that all of our categories, even those that come as the result of much study, must be applied with flexibility.
So I had realized with Shmuel: It was easy to go through life without seeing children who are different through relegating them with the simplifying glance of habit to the categories of the atypical. When Shmuel was born, I didn't see the child but the diagnostic category and Shmuel's own inability, as it were, to fulfill my expectations.
Another, perhaps more insidious way of such perceptual avoidance is through the very label "special." Though it is comforting at times to hear Shmuel referred to as a "tzaddik" and that he is incapable of transgression, such labels deprive children of the very possibility of entering into the community of mitzvah observance and thus deny them the possibility of their particular chelek, portion, in Torah. This chelek may be circumscribed, though there may be the possibility that even children like our Shmuel will also be able to say: "The world was created for me."
The phrase, "children like Shmuel," might be a more expansive category than I had thought on the day of his birth. Since then, my family and I have been exposed to the exceptionality of difference, not just as a theoretical construct or as a literary notion, but as part of the texture of everyday life. But more than that, because our own Shmuel so clearly manifests his difference, we have been confided with many other stories of exceptionality from neighbors, friends and colleagues.