“Severe epileptic fits should have been killing her,” Julia said. “That was nature’s way of destroying this person. But, no. There was a drug that could stop the spasms. It’s a very hard thing to want your child to die. To some degree, my anger is about the invention of these children. Because when I was born, they didn’t survive. These Imogens are on the increase as the sophistication and tyranny of intervention escalate.” Tania, on the other hand, wrote, “Imogen remains profoundly disabled but she knows her family, birth and fostered, and gets excited by visits from any of her grandparents.” Tania’s aura of calm certainty contrasts with Julia’s tendency toward muddled drama. Elinor once asked, “Mummy, if I get brain damage, can I go and live with Tania as well?” At Tania’s behest, Julia has had the do-not-resuscitate stamp removed from Imogen’s files. Unless Tania decides to adopt Imogen, these decisions rest solely in Julia’s hands. “But I won’t make them on my own,” Julia said. “That would be cruel.”
Julia’s writing about her experience—first in newspaper articles, and later in a book—was a cry for expiation that met mixed responses. Some readers called her brave; others called her self-serving. The day of our last interview, she said, “Yesterday, I pushed Imogen along the street. It’s a nightmare getting six blocks with a wheelchair. All the large cars are parked on the pavement, so you go along two cars’ worth, where there’s a big enough gap, and then you go onto the road, with the oncoming traffic. By the time you get six blocks, you’re a serious martyr. Every time she’s around, I experiment with being the mother of the disabled child. People walking along the pavement get out of the way and smile at you, that smile that goes, ‘You poor thing, I’m glad I’m not you!’ I can imagine polishing my halo at the end of every day. At the very same time, I can imagine being the most furious person in the world.”
• • •
In Peter Singer’s definition, Imogen, Ashley, and others like them are not persons. Nonetheless, the parents I met who lived with and cared for such children often described a great deal of personhood in them. It’s impossible to establish in any given case in what measure such personhood is observed and in what measure imagined or projected. Singer does not argue that parents who believe in the personhood of their children have to act toward them as they would toward nonpersons, but he opens the moral framework for someone to think that these children are expendable. I am not sure that, as activists claim, this will lead us into Hitlerian proposals to eliminate a much broader range of the disabled, but neither am I sure that Singer’s arguments are as rational as he makes them out to be. His fallacy is his assumption, for himself and for science, of omniscience.
The Australian disability advocate Chris Borthwick has written that for ethicists pondering such a question, “the identification of a class of people who are ‘humans’ but not human, if any such could be found, would be central.” Borthwick says that we accept someone’s state as vegetative when that person fails to persuade a doctor that he is conscious—in other words, what is in question is not consciousness, but the legible manifestation of consciousness. Borthwick views consciousness as largely unknowable. He points to a study published in Archives of Neurology in which nearly two-thirds of a group of eighty-four people judged to be “in a vegetative state” had “recovered awareness” within three years. “One must ask,” he writes, “in the light of the evidence, why it is that reasonable, moral, and ethical writers can extract these qualities of permanence and certainty from data that is, to put the matter no more strongly, clearly capable of other interpretations.” Borthwick maintains that even if some human beings are nonpersons, we cannot identify them definitively. It’s hard not to think of Anne McDonald and Christopher Nolan, who seemed to many professionals to be nonpersons, and who ultimately emerged into shimmering personhood. The same rationale that makes us deplore the death penalty in cases where the evidence is not entirely conclusive should give us pause in these supposedly clear-cut cases.
Contemplating Singer and Borthwick, I was reminded of Susan Arnsten, mother of Adam Delli-Bovi, who has Down syndrome, and her fascination with the Jewish idea that God exists between people rather than within them. I thought of the work on Deaf culture that shows how Sign emerges unbidden when there are two people to communicate in it, but lies dormant in children isolated from others who might employ it. I recalled the outrage Jay Neugeboren felt at the suggestion that his brother’s schizophrenia could be defined in chemical rather than in spiritual and personal terms. I dislike both the conceited science behind Singer’s position and the mawkish sentimentality of those who insist that we treat all human life equivalently, always. Of course, practical answers must be sought, but to think of those answers as better than approximate is foolishness. We assign personhood to one another, and we assign it to or withhold it from these disabled children. It is not discovered so much as it is introduced. The psychoanalyst Maggie Robbins once said, “Consciousness is not a noun; it’s a verb. Trying to pin it down like a fixed object is a recipe for disaster.” Tania sees something elemental, some quality that we might call grace, in Imogen, and Julia doesn’t; we commit an arrogant injustice if we insist that either woman is dreaming.
• • •
The daughters of the ant queen take care of their mother and siblings; in some bird species, older fledglings help parents raise younger chicks; but overall, little reciprocity is attached to nonhuman parenting. Human parenting is an ultimately bilateral lifetime relationship rather than a unilateral temporary one. Even before the ultimate turnaround in which children in their prime care for incapacitated elderly parents, the manifestations of reciprocity may determine the parents’ social status and self-regard. The prospect of such payback is often elided with the earlier reciprocity of the child’s adoring gaze, the affection implicit in dependency, the words of adulation lisped by children first grasping language. For the parents of MSD children, early reciprocity may be infrequent and ultimate reciprocity impossible.
But the pleasure of caring for children does not lie only in reciprocity. The French writer Annie Leclerc has spoken of “the profound taste we have for children,” and the feminist psychologist Daphne de Marneffe has said that a mother’s skill in responding to her child contributes “not only to her recognition of her child, but to her own sense of pleasure, effectiveness, and self-expression as well.” Psychoanalysis has long proposed that mothers’ early caretaking is a form of self-care. Freud describes how “parental love, which is so moving and at bottom so childish, is nothing but parental narcissism born again.”
This commonality of interest seems to have strengthened most of the parents I interviewed for this chapter, but not all parents can achieve it. Some disability activists, abortion opponents, and religious fundamentalists have argued that those who are unwilling to parent disabled children shouldn’t allow themselves to become pregnant in the first place. The reality, however, is that most people embark on parenthood in optimism, and even those who soberly consider a worst-case scenario cannot adequately predict their response to such a situation until they are in it.
Ambivalence exists in all human relationships, including parent-child. Anna Freud maintained that a mother could never satisfy her infant’s needs because those are infinite, but that eventually child and mother outgrow that dependence. Children with MSD have permanent needs far beyond that infinity. In Torn in Two, the British psychoanalyst Rozsika Parker complains that in our open, modern society, the extent of maternal ambivalence is a dark secret. Most mothers treat their occasional wish to be rid of their children as if it were the equivalent of murder itself. Parker proposes that mothering requires two impulses—the impulse to hold on, and the impulse to push away. To be a successful mother you must nurture and love your child, but cannot smother and cling to your child. Mothering involves sailing between what Parker calls “the Scylla of intrusiveness and the Charybdis of neglect.” She proposes that the sentimental idea of perfect synchrony between mother and child “can cast a sort of
sadness over motherhood—a constant state of mild regret that a delightful oneness seems always out of reach.” Perfection is a horizon virtue, and our very approach to it reveals its immutable distance.
The dark portion of maternal ambivalence toward typical children is posited as crucial to the child’s individuation. But severely disabled children who will never become independent will not benefit from their parents’ negative feelings, and so their situation demands an impossible state of emotional purity. Asking the parents of severely disabled children to feel less negative emotion than the parents of healthy children is ludicrous. My experience of these parents was that they all felt both love and despair. You cannot decide whether to be ambivalent. All you can decide is what to do with your ambivalence. Most of these parents have chosen to act on one side of the ambivalence they feel, and Julia Hollander chose to act on another side, but I am not persuaded that the ambivalence itself was so different from one of these families to the next. I am enough of a creature of my times to admire most the parents who kept their children and made brave sacrifices for them. I nonetheless esteem Julia Hollander for being honest with herself, and for making what all those other families did look like a choice.
VIII
Prodigies
Being gifted and being disabled are surprisingly similar: isolating, mystifying, petrifying. One of the most startling patterns that emerged during my research was that many people come to value abnormalities that are ostensibly undesirable. Equally, ostensibly desirable variances are often daunting. Many prospective parents who dread the idea of a disabled child will long for an accomplished one. Such children may create beauty in the world; they may derive intense pleasure from their achievements; they may stretch their parents’ lives into wonderful new alignments. Clever people often have clever sons and daughters, but dazzling brilliance is an aberration, as horizontal an identity as any in this study. Despite the past century’s breakthroughs in psychology and neuroscience, prodigiousness and genius are as little understood as autism. Like parents of children who are severely challenged, parents of exceptionally talented children are custodians of children beyond their comprehension.
A prodigy is able to function at an advanced adult level in some domain before the age of twelve. I’ve used the word expansively to include anyone who develops a profound innate gift at an early age, even if he does so more gradually or less publicly than classic prodigies. Prodigy derives from the Latin prodigium, a monster that violates the natural order. These people have differences so evident as to resemble a birth defect. The anxiety of abnormality goes beyond etymology. Few people wish to be identified as prodigies, especially given the correlation between prodigiousness and burnout, prodigiousness and freakishness. Prodigies are, in the eyes of many prodigies, pathetic, uncanny weirdos with little chance of lifetime social or professional success, their performances more party tricks than art.
The designation prodigy usually reflects timing, while genius reflects the ability to add something of value to human consciousness. Many people have genius without precocity, or prodigiousness without brilliance. The French poet Raymond Radiguet said, “Child prodigies exist just as there are extraordinary men. But they are rarely the same.” Here, however, I’ve been engaged by a continuum that embraces both phenomena and have allowed the words considerable overlap. The subjects of this chapter indicate how the emergence of disproportionate ability, at any stage, may alter family dynamics, much as the emergence of schizophrenia or disability will do, at any stage. Premature attainment and ultimate merit are, however, very different identities.
Like a disability, prodigiousness compels parents to redesign their lives around the special needs of their child. Once more, experts must be called in; once more, their primary strategies for dealing with the aberrance often undermine parental power. A child’s prodigiousness requires his parents to seek out a new community of people with similar experience; they soon face the mainstreaming dilemma and must decide whether to place their children with intellectual peers too old to befriend them, or with age peers who will be bewildered and alienated by their achievements. Brilliance can be as much of an impediment to intimacy as any developmental anomaly, and the health and happiness of families of prodigies do not outstrip those of others in this book.
Prodigiousness manifests most often in athletics, mathematics, chess, and music; I have focused on musical prodigies here because my ability to understand music exceeds my comprehension of sports, math, or chess. A musical prodigy’s development hinges on parental collaboration; without that support, the child would never gain access to an instrument or the training that even the most devout genius requires. As David Henry Feldman and Lynn T. Goldsmith, scholars in the field, have said, “A prodigy is a group enterprise.”
A parent is the progenitor of much of a child’s behavior, telling that child repeatedly who he has been, is, and could be, reconciling accomplishment and innocence. In constructing this narrative, parents often confuse the anomaly of developing fast with the objective of developing profoundly. There is no clear delineation between supporting and pressuring a child, between believing in your child and forcing your child to conform to what you imagine for him. You can damage prodigies by nurturing their talent at the expense of personal growth, or by cultivating general development at the expense of the special skill that might have given them the deepest fulfillment. You can make them feel that your love is contingent on their dazzling success, or that you don’t care about their talent. Prodigies invite a sacrifice of the present to the putative future. If society’s expectations for most children with profound differences are too low, expectations for prodigies are often perilously high.
Musicality does not appear to convey an evolutionary advantage, yet every human society has music. The archaeologist Steven Mithen, in The Singing Neanderthals, argues that music plays a crucial role in cognitive development. Recent work on infant-directed speech—the exaggerated tonalities that almost everyone uses in talking to babies—has shown that infants prefer these melodic enunciations. The scholar John Blacking has said that music “is there in the body, waiting to be brought out and developed.” Members of one culture can differentiate the joyful and sorrowful music of another culture. This innate capacity for musical discernment notwithstanding, music is shaped by exposure, like any language; we absorb our culture’s characteristic harmonic progressions and feel the fulfillment or reversal of learned musical expectations. The sociologist Robert Garfias contends that music and spoken language are a single system acquired in early infancy, and that music may be our “primary means of sustaining a process of socialization.”
Just as deaf children will begin to communicate with physical gestures, musical prodigies may use musical tones to convey information from the outset. For them, music is speech itself. It is said that Handel sang before he talked. The pianist Arthur Rubinstein would sing a mazurka when he wanted cake. John Sloboda, a music psychologist who studies why we respond emotionally to patterns of notes and rhythms, wrote, “Musical idioms are not languages, and do not have referential meaning in the way that languages such as English do. They do, however, have complex multi-leveled structural features which resemble syntax or grammar.” This means that, in the sense proposed by the linguist Noam Chomsky, a deep structure of music in the brain can be vitalized by exposure to sounds. Leon Botstein, president of Bard College and himself a former prodigy, said, “What makes for a great musician is the emotional gravitation to music as an alternative form of linguistic communication.” As with spoken and signed language, there must be not only a means to express, but also people to receive, respond, and encourage, which is why parental involvement is crucial to the emergence of this faculty.
That music is a first language does not guarantee brilliant use of that language, however, any more than American children’s fluency in English makes them all poets.
• • •
For Evgeny Kissin, called Zhenya by those who know him, music wa
s without question a first language, and one that his parents understood. In the mid-1970s, friends would visit the piano teacher Emilia Kissina in Moscow, and they would hear her young son play the piano. Frustrated at her reluctance to enroll him in a special academy (“They lose their childhood, they struggle so hard in those places,” she would say), a friend arranged an appointment with Anna Pavlovna Kantor, of the famed Gnessin School, in 1976, when Zhenya was five. Kantor, too, was initially reluctant. “It was September,” she recalled. “I said the exams were long over. ‘When you meet the little boy,’ this friend replied, ‘you will understand that nothing is over.’ One week after, this mother came with her son, with curls all over his head like an angel. He opened his bottomless eyes, and I saw a light in him. Without knowing how to read music or the names of notes, he played everything. I asked him to translate a story into music. I said that we were coming into a dark forest, full of wild animals, very scary, and then step by step the sun rises, and the birds start singing. He began in the piano’s lower register, in a dark and dangerous place, and then, lighter and lighter, the birds awakening, the first rays of the sun, and finally a delightful, almost ecstatic melody, his hands running along the keys. I didn’t want to teach him. Such imagination can be very fragile. But his mother said, ‘Clever and faithful helper, don’t worry. He is interested in whatever is new to him. Try.’”
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