Personal Matters

Jennifer Alise Drew
Parent/child hand
Photo by Liane Metzler

In my early twenties, after the magazine I was working for threw its last party, I managed to string together a handful of freelance copyediting jobs. (It was the year 2000 in New York, when a person could still sort of survive this way.) The most sustaining of them was for the publisher Grove Atlantic, about which I was proud—they had William Burroughs, for one, and Jeanette Winterson, and Henry Miller. I walked to their Union Square offices from my East Village apartment to pick up the manuscripts, thick loose-leaf packages that inspired both purpose and dread. The managing editor who gave me assignments and harassed me when they were nearing their due date—meeting deadlines was not my strong suit—hired me, I am sure, because of my sex and age. He made this clear when we met for the occasional drink, but there was no sense in getting uppity: it was, after all, the tail end of an era in which big-name, middle-aged staff writers took young wannabes home and set them on their windowsills like flowerless vases. I needed the work.

One of the first books I brought home was Kenzaburo Oe’s semi-autobiographical novel Rouse Up O Young Men of the New Age!—a book I read on my bed, the only place to sit in my tiny studio, apart from a wooden stool at the makeshift desk that was cluttered with darkroom paraphernalia and had an enlarger bolted to it. I agonized over the manuscript, leaving curled eraser crumbs in the sheets. I read it through twice, but I remember nothing of the plot, none of the characters—nothing about it stuck with me, as I suppose it should not have. The book, like much of Oe’s writing, examines a father’s relationship with his brain-injured son, and I was not a parent, nor particularly interested in children, with or without disabilities. I had never heard of Kenzaburo Oe or that he was known, as he puts it, for “writing about the dignity of human beings.” At that stage in my life, I was more interested in Mary McCarthy, specifically the Mary McCarthy of “The Man in the Brooks Brothers Shirt”: “She could feel the power running in her, like a medium on a particularly good night.”That is how it—she, a girl in the first half of her twenties—feels to me now; I am sure I did not feel that way then.

Fast-forward some years: through the ashes that sifted down onto the windowsill of that apartment the following September, through leaving New York, through other experiences sufficient to grant humility—a few years working with Hunter S. Thompson, graduate school, marriage, proofreading nail polish bottles in a factory in Van Nuys—and there is a baby. A baby born by choice: that is to say, we knew it was possible he would be born with different abilities, and we wanted him anyway. 

Kenzaburo Oe’s son, Hikari, was born in 1963 with a brain hernia. The doctors told Oe and his wife that, without an operation, their son would die, but that an operation would likely leave him with profound disabilities. This scene plays out in Oe’s 1964 novel, A Personal Matter, in words far harsher than these. A few months after he was awarded the 1994 Nobel Prize in Literature, he told The New Yorker that before Hikari’s birth, “I had been a passive person. My life had been dark and negative, with no thought toward the future...but with the birth of my son my heart opened.”

For a month and a half following Hikari’s arrival, Oe was unable to decide whether to proceed with the surgery. Then he went to Hiroshima to report on an anti-nuclear conference, and subterraneously, he’s said, “to escape to some other horizon.” He met with survivors of the atomic bomb and realized he had to do all he could to save his son. In A Personal Matter, Oe’s narrator, Bird, leaves the baby in the hospital and renews his affair with whiskey, along with a girl he knew in school; the psychological debasement that Oe described feeling during the period before Hikari’s surgery is taken to the extreme with Bird, for all but the last few pages.

Oe has explored his son’s story over and over in his work. As Hikari grew, so did his fictional counterpart—sometimes named Eeyore, as he is in Rouse Up, sometimes Mori or Hikari. In A Personal Matter, he is Kikuhiko, after a young man that Bird has betrayed. Oe wrote two versions of Hikari’s birth, each with a different outcome; the other is in the novella Aghwee the Sky Monster. In both versions, a child is born with what doctors surmise is a brain hernia, but with what turns out to have been a benign tumor. As Oe told the Paris Review in 2007, “Aghwee’s father chooses not to help his deformed child live. In A Personal Matter, I wrote about another protagonist—Bird—who chooses to live with the child....Having written about the actions of both Aghwee’s father and Bird, I steered my life toward those of Bird. I didn’t intend to do this but afterward I realized that this was what I’d done.” While Oe only briefly thought of allowing his son to die, the period during which he wished for Hikari’s death is the source of his deepest shame. 

My own choice, which arrived during pregnancy as opposed to after birth, has nothing in common with Oe’s, beyond the basic question of whether one is willing to raise a child with disabilities. At twenty-six weeks’ gestation, our baby stopped kicking; a Doppler ultrasound revealed that he was in distress, vastly underweight, with too little amniotic fluid to sustain him. Later, another doctor thought he saw an extra digit on one of the hands, signaling all manner of dark, syndromic possibilities. My husband and I quickly learned what could result from growth restriction and hypoxia, from preterm birth, but it was all possibility, statistics. For me, what we faced was less a choice than an inability to do anything but wait. I’m aware, of course, that this was somewhat cowardly—that what I did was hide from what facts we had, retreat into stillness, into hope and see. I was already too attached to the little body in question to consider the giant step of a late-term abortion. Our doctor’s entreaty about deciding what quality of life we wanted to bring into the world fell flat: I did not know how to make that decision, and I still don’t. What defines quality? Is life without speech worth living? Is happiness possible without the real use of one’s arms and legs? What about profound intellectual disability, a short lifespan, a cranial or spinal deformity? We were being asked to base a decision on unknown outcomes, on assumptions I now know are ableist, to play god. 

Our son emerged weighing three pounds, fifteen ounces. He was tiny and wrinkled and jaundiced, but his eyes were a keen, deep blue, and the down still covering his body gave him the look of a baby dusted in gold. He was, apart from the jaundice, healthy and physically fine. We would not discover anything “wrong” with him until later, when he began to miss his developmental milestones; we were given the diagnosis of cerebral palsy shortly before he turned two.

From the time he was eighteen months until he was three, I drove him to an early intervention program for children with disabilities at UCLA, a sort of pre-preschool, where we met other families like ours. Even then, with such young children, cliques were forming: parents of children whose challenges were great had difficulty relating to parents of children who had milder issues—a speech delay, maybe, or high-functioning autism. I was painfully aware of my son’s growing beauty: his dimpled grin, banker’s glasses, and curly dandelion hair charmed everyone who saw him, overshadowing other facts (he wasn’t walking or talking). Beauty is a great gift over which we have no control. To be a beautiful child is a boon. People smile at a cute two- and three- and four-year-old with disabilities; they tend to stare and then look away when that same child is joyfully crawling in a public space at six, his butt in the air, thin legs scooting behind him with the alacrity of a wild animal crossing the savanna. They stare openly and with horror at that child in the throes of his self-stimulatory behavior, eyes rolled up and face contorted, guttural sounds emitting from his mouth, arms and legs kicking and waving. How quickly ugliness confers the status of “other.”

Our boy is a force of nature: intelligent and hilarious and possessed of an impressive strength of will. We got lucky; I have known this for a long time. It turns out that a wheelchair is a trifle. Had we been less lucky, our fights would be different. I know now that some diagnoses can compromise daily life past what a child and his caregivers may be able to bear: the unqualified suffering of Tay-Sachs, for example, or something like Emanuel syndrome, to which, due to my genetics, my pregnancies were vulnerable. Just today, I passed a family in the grocery store, whose eight- or nine-year-old was being pushed in a large stroller, visibly struggling against the straps. I saw them again at checkout; the boy’s sister—she could not have been much past twelve—was rocking the stroller as though he were a baby, her face as long and gray as her parents’. Loving someone whose experience of the world causes them pain requires something superhuman and comes at a cost. But once you love a child, you cannot imagine him being some other thing, some other way; only with great care would you wish to go back and make him into someone else. 

It took me six years after my son was born to get around to reading A Personal Matter. When a friend and fellow writer recommended it to me, I bought it, and then, after skimming the first few pages, set it aside. I was irritated by the overly lengthy explanation of the narrator’s fetishes—maps and alcohol—and the way he avoids his wife, who is coincidently in labor, “naked on a rubber mat, tightly shutting her eyes like a shot pheasant falling out of the sky.”Everything about the beginning oozes horror: horror at his wife’s body, at the very place (Africa, which “resembled the skull of a man who had hung his head”) he has fantasized so long about visiting. I wasn’t sure I was ready for Oe’s exacting take on anything, let alone disability.

There is a photograph of the young Oe with Hikari at five or six on the book’s cover, which confused me when I first saw it: confused because there is initially little resemblance between the writer, who appears here in a dark suit and glasses, and his narrator (though one of my favorite moments in the Paris Review interview is when the 72-year-old Oe says he rarely goes to bars because when he does, he tends to get into fistfights). Here is Bird, introduced to us as a delinquent, a scuttling, blinkered young man of twenty-seven who spent the first thirty days of his marriage whiskey-drunk, who was expelled from high school. Before he is summoned to the hospital, he becomes engaged in a tussle with a gang of boys. “If I don’t fight,” Bird tells himself, “my baby will be born into the world solely to lead the worst possible life.” He knocks one of the teenagers unconscious, and the rest of them leave him alone, rooting out a broken tooth that he spits onto the street.

I read in a kind of fever, looking for the moment Bird wakes up: surely he wakes up, I thought. Bird is an unlikeable narrator, a narrator we nonetheless root for, hoping he will do the right thing. Unlike Oe in 1963, we have the benefit today of socio-political enlightenment, of neonatal intensive care wards. There was much less medical intervention available then to save a brain-injured baby and less desire to do so: children with disabilities were not believed capable of rising above the limitations of their birth. The whiskey delirium, too, is an apt metaphor for early parenthood—the finding of oneself in land unknown, sleepless, and in Bird’s case, utterly repulsed by the baby and by fatherhood. Unlike Africa, there are no maps for this. Bird’s reluctance is interesting; he drinks away not only the beginning of his marriage and his place in graduate school, but the decision he has now been tasked with making, unable to tame the “wilderness inside himself.”

And the hospital scenes are extraordinary. Bird’s encounters there made me think of the bar lizards in Fear and Loathing in Las Vegas, their turpitude and craven selfishness. When he meets his son’s medical team, Bird announces several times, with hostility, “I’m the father,” which he later imagines comes across as “I’m the monster’s father.” The director of the hospital invites Bird to come and “see the goods,” and Bird hesitates, wanting to know exactly what he will be seeing. “There appear to be two heads!” the director tells him, covering a giggle. Bird asks if there is any hope that the baby will “develop normally”:

“Develop normally!” The Director’s voice rose as though in anger. “We’re speaking of a brain hernia! You might cut open the skull and force the brain back, but even then you’d be lucky to get some kind of vegetable human being. Precisely what do you mean by ‘normally’?”

The director offers Bird the choice of moving the infant to a university hospital, a choice that is not a choice, as there is nothing else to do. Then, in parting, he whispers, “Of course, you can forbid them to operate if you choose to.” Bird’s reaction—“Poor wretched little baby!”—momentarily matches the reader’s: you want to save the baby, but should you? Bird eventually pushes a pediatrician into substituting sugar water for milk to weaken him so that surgery is no longer an option—and there we hang for much of the book.

The hospital scenes are a good example of what the Nuffield Council on Bioethics calls a “partnership of care,” in which parents and the medical team make an informed decision about what is best for the baby, though the parents’ wishes should prevail. As the Journal of Medical Ethics notes in the 2007 article “Letting Babies Die,” owing to “both the uncertainty of outcome and the inability of the baby to make any choice for itself,” what is best for the baby is often not clear: 

What the baby, older child or adult is entitled to, morally and legally, is appropriate care. Neonatal intensive care is invasive and burdensome. A baby may be subjected to 200 or so intrusive and painful procedures in one fortnight. He or she is isolated from the love and warmth of their family, and deprived of the care that should be the birthright of any newborn. When insisting on treatment imposes an intolerable burden on the baby, such treatment becomes inhumane. 

If A Personal Matter scrutinizes its author’s shame at his indifference, however brief, toward his son’s life, it is also asking us to look at how we value human life and why. If Bird’s baby is likely to die without surgery and likely to survive surgery with little cognitive ability to experience existence, should he be tasked with doing so? Isn’t that one way to describe an “intolerable burden” on a life, and not just the infant’s, but that of everyone who loves him? In other words, though Bird is the epitome of a selfish human, wouldn’t undertaking such a surgery derive from purely selfish—and sentimental—reasons? 

In the last four pages of A Personal Matter, Bird decides to retrieve his son from the euthanizing abortionist with whom he’s left him and take him back to the hospital for surgery. I read somewhere that this conclusion, the small space of Bird’s redemption following the baby’s recovery, contains the book’s only dull note: it wraps up too quickly, with Bird absolved not only of his affair but also his shame, his nickname, and even his infant’s original diagnosis. It all feels too neat—too little, too late. At least, I felt this way as an editor; as a parent, it came as a relief, however implausible it may have been. Writers love this book. I don’t know many parents of children with special needs who could get through it without difficulty.

As far as I can tell, none of Oe’s interviewers have questioned why he chose to change his son’s brain hernia into a benign tumor in the final pages. Why edit out that which, in Aghwee the Sky Monster, consigns the father to unnecessary murder, and in A Personal Matter, makes the boy’s normal development seem more likely? I wonder at this perhaps unregistered wish, which Oe voiced so early on (he wrote both books during the first year of Hikari’s life), to change his son’s disability. I suspect that if he were asked about it now, he would say that giving the fictional child a healthy brain steals something essential from Hikari’s story. 

One of the book’s minor themes is the possibility of a “pluralistic universe.” As Bird’s lover, Himiko, puts it in their first scene together, “Every time you stand at a crossroads of life and death, you have two universes in front of you; one loses all relation to you because you die, the other maintains its relation to you because you survive in it....In other words, various universes emerge around each of us the way tree limbs and leaves branch away from the trunk.” I thought of this as I read the interviews Oe has given, how he’s returned again and again to the same themes, the same problems, allowing them different outcomes: he does all this time-travel from his living room, sitting across from his constant companion, his son. I thought of it again when I read the story of Aghwee, whose father, tormented by what he has done, takes the baby’s ghost—swaddled in white and now the size of a kangaroo—to ride a Ferris wheel, a train, to see rhinos at the zoo. That part of Oe that leaned, however briefly, toward a different choice seems to run alongside him like a shadow—I know, because I can hardly think of what my life would be, without my son in it. 

When you read about Oe’s work, you read—as recently as last year in the New York Times and the Wall Street Journal—descriptors like “brain-damaged” and “mentally disabled” and “mentally handicapped” and “damaged son” and “idiot son,” even if the latter is first put in quotes. Oe’s Nobel biographer used the phrase “savior son,” as though Hikari’s existence has mainly served to further Oe’s artistic development. And on Wikipedia, Hikari is described as having been “brain-damaged since his birth”—surely one of the less well-examined sentences in history. But my twenty-something self probably would not have questioned that wording, either: I would not have reasoned that if you were brain-injured at birth, you would always be brain-injured. 

Hikari is now a celebrated classical composer who spends his days listening to CDs and composing while his father writes and reads. Hikari’s first CD sold more copies than any of Oe’s books, which Oe has boasted about. On the occasion of Oe’s Nobel Prize, the New York Times wrote that Hikari “has overcome his disability enough to become a composer,” which is a curious phrase: it is as though the two aspects of his personality are at war with each other, as though his particular neurology that gave him autism and epilepsy, that made him respond at five to bird calls and not to language, that made him understand music the way most of us never will, is not precisely what gave him this gift. Why does Hikari need first to be defined by his disabilities, as though “brain-damaged” is more apt than “musically gifted”? 

I would never describe my son as “my disabled son.” He is merely my son, a boy who, owing to his own unique neurology, happens to do a few things differently, but I’m aware here that I’m playing a bit of a glad game. I both want my son to stand on his own as a capable human—as a person without a prefix, whole instead of part absent, affirmed instead of denied—and I want him to accept and assume every part of himself, including his cerebral palsy; his “stimming”; his race-car-cool, neon-red wheelchair, which right now, at six years old, he does. This is a tall order, of course—I can’t always manage it myself—and the fact is that disability bleeds past its own edges: not walking, not talking with ease, being a kid who spends a significant portion of his childhood in physical, speech, and occupational therapy, changes a personality. Our selfhood exists behind the screen of our experience. Maybe my son will never see himself as someone whose differences make him anything other than great, but he will also be treated as disabled, and if experience is any indication, our sense of self is all too susceptible to the world’s expectations. We may not be capable of total blindness when it comes to sexual, racial, and ableist characteristics, but when we talk about “handicapped” or “disabled” people, we’re seeing through only one lens.

But is it excessively PC, precious, even, to use terms like “differently abled”? Scan the UN’s Convention on the Rights of Persons with Disabilities and consider the fact that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis”—that “disability,” in other words, is a reaction to “ability,” and therefore not a real descriptor on its own.

Much has been made of the “extraordinary devotion” Kenzaburo Oe has shown his son, first because it is unusual for Japanese fathers of his era to do so, and second, I suppose, because this is what we say about raising children with challenges: special or “extraordinary” children require “extraordinary” care. But “extraordinary” does not necessarily mean anything other than not-normal: we remark on difference, sometimes choosing a word that sounds praiseworthy, because it is something to remark upon. The truth is, not everyone will have the desire, the resources, and the reservoir of patience and love to raise a child with special needs. Had Hikari been born to other parents, his life would have likely taken a less happy path. 

Here is a question for our time: if the state, or indeed the federal government, mandates that all children must be born, or saved, then how will we provide for their care? One wants to remind pro-lifers that life continues past conception. Who is going to support the babies that some parents are not set up to have? Without federal programs like Medicaid, how will parents of special needs children sustain the years of early intervention and therapy, complex medical care, and time and personal compromise that, without wealth or help, are beyond the reach of most people? How can we raise children to meaningful lives if they have to not only “overcome” their disabilities, but lack the basic resources to do it? Decisions about right-to-life are complex and ethically murky, and they are personal. How can we tell parents that the choice is not theirs to make? 

At the end of the Paris Review interview, Oe is asked if he finds faith to be a burden. He doesn’t have faith, he says: 

If there is one area through which I encounter the transcendental, it is my life with Hikari during the past forty-four years....Every night, I wake Hikari to go to the bathroom. When he returns to bed for some reason he cannot put a blanket on himself so I put a blanket on him. Taking Hikari to the bathroom is a ritual and has for me a religious tone. Then I have a nightcap and go to bed.

If Oe’s talk about his son is consistently tender and respectful, his alter ego labors on the page. I think of the New York Times’ review of his most recent novel, Death by Water, in which it’s said that Oe’s narrator “takes out his creative crisis on his disabled son in acts of breathtaking emotional cruelty.” I understand how the failures and fatigue of what is now fifty-four years of caring for Hikari must haunt Oe, because my own failures as a parent already haunt me.

So you might, as Oe did in A Personal Matter, use a different word in place of “faith.” In the book, Bird goes to visit a friend, a Balkan diplomat who has abandoned his own duties and taken up with a Japanese girl, and tells him he has left his son to die. The diplomat is upset: “Kafka, you know,” he tells him, “wrote in a letter to his father, the only thing a parent can do for a child is to welcome it when it arrives.” Before they part, he gives Bird a dictionary in which he inscribes the Slavic word for “hope.” Later, at the end of the book, Bird thinks of this and decides that when he is home with his son, he will look up the word “forbearance.” 

Jennifer Alise Drew is the nonfiction editor for AGNI magazine and has worked as an editor for numerous other magazines and publishers, including Open City, Simon & Schuster, Houghton Mifflin, and Grove Atlantic. Her essays have appeared here, as well as in SliceThe Chattahoochee ReviewHippocampus Magazine, and Lumina.