February 7, 2008
The journey to inclusion
Seeing differences in our children poses cultural challenge
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 syndrome.
A close friend of ours, a nurse, 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 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 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.
Amid 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, 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 in the Journal of Philosophy of Education, "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 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: "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 that affords him with the experience of both opportunity and responsibility: "For me the world was created." For it is the image of God that 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.