Monday, June 1, 2009

Fear and Loathing in Jerusalem: the Prequel

Just wanted to say thanks for all the supportive comments and advice on our adventures in education in Jerusalem with our son, Shmuel.

I'm also reposting here an article I wrote for the magazine of the Orthodox Union, Jewish Action a few years ago. I see that I've come along way myself - perhaps others in our community will follow!

Pulled Up Short by Shmuel

My son, Shmuel, was born four years ago on the tenth of Cheshvan. My wife woke me at 3 A.M.; we were at the hospital a bit after 3:30. Not her first delivery, the labor was quick: by 5:45, she gave birth. So efficient she was, I thought, that there would be time to make it to my regular 7 A.M. minyan in the Bayit Vegan neighborhood of Jerusalem. Our newborn would fit into my schedule—everything according to expectations; everything as planned. I accompanied the baby to the post-delivery room. The doctor, flanked by two nurses, labored over the baby with unexpected focus and intensity. Finally, the doctor emerged: our newborn, he suspected (really, he knew), had Down’s syndrome.

A close friend of ours, a nurse at Shaarei Tzedek (where more babies with Down’s syndrome are born than any place in the world) whispered to my wife, moments after we received the news, that she would be happy to take the baby and foster him—even before my wife would be released from the hospital. The doctors and hospital staff, who, in the past, had been unswerving in their aversion to early discharge, happily acquiesced to my wife’s request to go home after only one day, relieved that we would, in fact, be taking the baby home. Friends visited: two of them conducted a dispute, in my presence, about whether a father of a child with Down’s syndrome should be wished a congratulatory mazal tov (the answer is yes). A rabbinical authority in my neighborhood averred upon hearing the news that the event could only be looked at as a manifestation of unadulterated din, Divine judgment; someone else recounted the story of a father of a similar child who had proclaimed at the Brit Milah of his son that the birth of such a child was a manifestation of pure rachamim, Divine mercy. A neighbor advised that we really should foster the child: raising such a child—though, of course, “a blessing!”—would be too large a burden, not to mention a source of embarrassment to our family. Amidst all of this, the languages of advice, explanation and consolation—and I had hardly noticed—there was an infant, nursing in my wife’s steadfast arms.

The irony, unappreciated then, and for many months, even years after, was that I had devoted much of my personal and professional energies to understanding conceptions of diversity and difference, first in relation to the works of the Western literary tradition, and then, on a different path, in relation to Torah and the teachings of Chazal. Throughout my career as a professor of English literature, I have been compelled by literary and theoretical meditations on difference; when I entered the realm of the beit midrash, I discovered the ways in which Chazal affirm a notion of Divine truth—emet—with a multiplicity of different faces. When I was confronted, however with a “child of difference,” not the difference espoused enthusiastically around large oak tables by my teachers in graduate school at Columbia, or even that discussed between the four walls of the beit midrash, I was unprepared. All of my adventures in the pursuit of understanding difference, diversity and pluralism in the arcane and academic languages of epistemology and literary hermeneutics, and even in the realm of limud, had insufficiently prepared me for Shmuel.

When the world, as Deborah Kerdeman writes, “departs from our expectations and desires,” and thus “refuses to be appropriated by us or subjected to our categories, we are “pulled up short.” That is, suddenly, we encounter a reality that our categories fail to fully assimilate: it is an experience associated with “loss” or failure—the inability of our cognitive equipment to provide a map adequate to “what happens.” I had been “pulled up short” by the birth of my son Shmuel, or, more accurately, pulled up short by the initially shattering experience of having an atypical child, a child with Down’s syndrome.

To be sure, the label “atypical,” or the exceptional, has useful diagnostic functions. But the question, I wondered, was in what sense, if any, is there a conception of typicality in the Torah? That is, does the Torah proscribe a notion of typicality, and how does it accommodate conceptions of difference? If the Biblical notion of tzelem Elokim (man created in the image of God) affirms a similarity between man and the Divine, with all men created in His image, Chazal in Sanhedrin (37a) come to qualify that assertion of similarity with an emphasis on difference: 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.“When a man mints coins with one ‘stamp,’ all [of the coins] are similar to one other, but when the King of Kings mints each man from the ‘stamp’ of Adam Harishon, each one of them is different; therefore it is incumbent upon each person to say, ‘For me the world was created.’” Created from the stamp of the First Man, and traceable to that original source in his similarity, each man also evidences an ineluctable difference. It is this difference which affords him with the experience of both opportunity and responsibility: “For me the world was created.” For it is the image of God which guarantees that all manifestations of difference are linked back first to Adam Harishon, and then to the Divine. As Dr. Rahamim Melamed-Cohen observes in his remarkable book about the exceptional child in the Jewish tradition, there are blessings recited upon seeing difference or exceptionality in the Divine creation, but only the blessing over human exceptionality includes the shem Hashem, the Divine name. Only in those human differences, though sometimes confounding our expectations and “pulling us up short,” does the Divine image dwell.

Notwithstanding the pervasive attitude of a contemporary Western culture that aggressively advertises its commitment to multiplicity, diversity and pluralism, such a culture does not really encourage the encounter with genuine difference. As a recent New York Times article observed, more and more prospective parents in the United States choose to terminate pregnancies rather than face the prospect of nurturing a difference that has a human face. The faces of those who are born also sometimes remain invisible—not because their faces lack the ability to make an impression, but rather because the cognitive lenses available fail to afford the refinement of vision that allows such children to be seen. We view the world through a set of categories and expectations; and what doesn’t fall within those categories does not register on our cognitive screens. Vision may be a biological mechanism, but what we, in fact, see is also a function of our perceptual habits and prejudices.

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 thirteen, inquired quietly and matter of factly, “Does he have Down’s 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 fifteen minutes later to pick up Shmuel and smother him in kisses. Our second oldest daughter, Avital, then eight, wanted to know: “What is Down’s 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’s 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 which 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” may 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. It turns out that the children who wear the badge of typicality, who seem to fulfill everyone’s expectations, may have their own secret—not failings, but differences. The matmid who lives in the corner building may have dyslexia, the “Queen of the Class” may have a learning disability. That such revelations come hesitatingly may be a function of a general cultural denial of difference that has made inroads into our own communities. Yet if we are fearful of revealing our imperfections or are reluctant to acknowledge the differences of others, it is not out of fidelity to the demands of Torah.

Quite the contrary, there is a way of seeing that is part of our inheritance of our forefather Yaakov: Unlike his brother Esav who hurries off to Mount Seir to receive his full reward in his experience of the perfection of this world, Yaakov “leads on softly”—accommodating the pace and needs of his “nursing” cattle and “tender” children (Bereishit 33:13). Yaakov slows down to tend to the needs of others, acknowledging, unlike Esav, imperfection as part of the nature of this world. We are mistaken to believe that children with Down’s syndrome or other disabilities are the only ones who are “tender.” Viewing my children (not just Shmuel, but his brothers and sisters as well) through the unthinking application of fixed categories risks missing the distinctive manifestation of tzelem Elokim which each of them—not just the diagnostically “special”—represents. When Shmuel was born, I didn’t see the child, but the diagnostic category, and Shmuel’s own inability to fulfill my expectations.This is not to deny that there is a continuum of exceptionality, but Shmuel, like almost all children, confounds categories; indeed, the most typical of children, if we look closely, will show themselves to be atypical.

Calibrating our perceptual mechanisms so that we can see the “tender” among us is not, however, a one-time affair. Recently, after a shiur I gave, a distraught father of a newly born “special” child asked me: “How are you so at peace with your Shmuel?” In explaining my “transformation,” I may have mentioned the stories of Avital or Elisheva, or perhaps the image of Shmuel caressing his own younger brother in the hospital on the day of his birth, or perhaps the memory of Shmuel answering his first berachah with “Amen.” The very next Shabbat, however, walking through our neighborhood, my wife and I passed by a couple wheeling a large carriage, to which was attached a respirator—on which the father made painstaking adjustments. I turned to my wife and uttered, “How sad….” Her response was immediate, the rebuke barely camouflaged: “But don’t you see how much he loves his child?”

To the question, “But don’t you see?” very often, the answer is: “No.” Rabbi Elazar was chastened for a perceptual complacency born out of pride; in the face of the new father who had asked my advice, I had evidenced a similar self-contentment. To his question, I should have simply answered: There’s no magical transformation, no singular turning-point, no defining epiphany, but rather the ongoing challenge to be “soft like a reed”—to be flexible in vision.

Seeing the atypicality of Shmuel thus remains both a process and challenge—of acknowledging that difference is not just a theoretical ideal for the seminar room, nor just part of earnest discussions about epistemological pluralism or multiculturalism, or even a conception of limud confined to the walls of the beit midrash. But rather that difference has a face (like that of the man encountered by Rabbi Elazar), through which the image of the Divine “Craftsman,” if we would only learn how to look properly, can be seen.


Spinal Muscular Atrophy - Shira Fisher said...

It's interesting reading what you write. The one thing I have learned or understood even more since the terminal diagnosis of my daughter is that you can't explain everything. You can't explain the gut wrenching sense of loss and panic we feel when we find out our children are sick! There is nothing that prepares us for the moment we are presented with the challenge of our lives, for the moment when we have to choose to step up to the plate and play ball or quit.
I feel for you William I really do. I don't feel sorry for you but I know what you are going through. I see how much you love your son and how much you want everything every so called normal boy gets.
There is nothing that can describe or make anyone feel what a parent feels for their children in good or challenging times. Your article had a lot of references, etc. there but nothing describes how as a parent your whole present and future life passes before you in an instant when confronted with what you have been and are confronting every day with your son.
For me the hardest part of my journey other than the diagnosis of my daughter's illness has been people. I have really learned to look past the clothing, the looks, and look by listening and watching how people react. I have to say that more often than not it hasn't been a good experience and I have been let down a lot by humanity. Even harder than being let down by people which is ultimately my own problem for having any expectations of people even in my circumstance has been to still be compassionate.

For me it all comes down to, "Compassion without action is empty." I now act more and go beyond just caring and no longer expect anything from humanity but this does not mean that I won't bring things to light. "If you see an injustice being committed, you aren't an observer, you are a participant." - June Collwood

There are many people I have read on your blog that care deeply for you and your family and I can see it hurts them to see how confusing religious life can be with a child facing challenges.

Your experience with your son is so different than what the people you are reaching out to to include your son think they would experience by including him. People are so scared of what is not "NORMAL" a term I hate.

For me it pains me to watch you get turned down by religious people for what ever reason! The only saving grace for your son is that he has his syblings and his parents who have risen above religion, past the words, beyond dogma to Neshema.

Annie said...

Shmuel's and Shira's Dads - Whatever I can possibly say would be dwarfed by your words, but I just wanted to thank you both for the wonderful lessons you teach us in our struggles to live as "bnei adam" in this difficult world. I think G-d chose you for a reason.

Menachem Lipkin said...

Nice article. I spoke about "expectations" at Yisrael's brit. How when a woman is "expecting" we create a world of expectations in our minds. Then, sometimes, we have to shift our expectations to adapt to reality. B"H we were able to do that almost instantly. (That Yisrael could have Down Syndrome was always in our minds given our ages at the time of the pregnancy.)

I wrote our story here

Tr8erGirl said...

How cute is that kid?? Have you been successful in finding a school yet?

aj said...

All Is Well In this Place

Delight yourself in the Lord and he will give you your heart’s desire. Psalm 37:4

Seven years ago, I took my first guided meditation… a walk to God. Once there, we were invited to ask a question. I was new at this and it took a while, but ultimately I stood in a beautiful tower, full of light that seemed to go upward forever, and asked, “Will my son be well?”

My son was diagnosed with Autism at four. Despite the best doctors, little progress was made and now, years later, his language was odd and repetitive. There were tics, and his isolation grew as other children chose to avoid him. Watching his struggle was breaking my heart. So my question burned. And the answer came.

“All is well in this place”.

I wasn’t quite sure what it meant, but I was relieved to know that sometime in the future, at least for a few moments each day in meditation, he’d find this peace.

It wasn’t until years later that the true meaning was revealed. My life by then had become an inward journey, sweet with meditation and communion, and outwardly, magnificent. Then, it dawned on me…why not heal Rio? So, I went into meditation, stated my desire and asked for help. Three weeks later I heard the words, “meditate with him everyday and he will be healed.” We began immediately, meditating, speaking the truth, and just as quickly little pieces of “autism” began to vanish, the tics, the odd repetitive speech, and his authentic self emerged. And I witnessed his first conversation. And in solitude, I fell to my knees and wept, overcome by the power of it.

So come to this place, where all is well, this higher vibration, and bring your child with you. Together in your mind. As you hang out with God in this higher place. And see what comes through as you declare your greatest wish for them. And shower them with light. Not implore…declare…in great, great gratitude. And love for God.

And watch as miracles happen.

For in the Kingdom of God all is well.

And four years later, Rio's recording his first rap, a collaboration with Rev. Run of RunDMC, a song entitled "Who Am I?" as part of the miracle project,
"we are the chosen few, not much, but what can we do? And if you be hearin' me...I am the vibration of creativity" rio

walkin' in a miracle...the vibration of God, xJudith

aj said...

my apologies to my son, i misquoted his lic, lyric to most of us, "if you all be hearing me, i am the frequency of creativity." sorry Rio...xmom