Still, they kept Lynn at home until she was fifteen. And taller and heavier than my mother, and very excitable. And dangerous.
And that would be the last time I saw my sister, at about the age of fifteen.
It was repeatedly said of her, But Lynn seemed perfectly normal as a baby. She was so beautiful! She gave no sign.
Was it so, Lynn had given no sign? Who can recall, so many years later?
In retrospect, we see what we are hoping to see. We see what our most flattering narrative will allow us to see. But in medias res we scarcely know what we are seeing, for it happens too swiftly to be processed.
For it came to be a story told and retold—no doubt recounted endlessly by my parents to doctors, therapists, nurses—of how when she’d been very young, two or three years old, Lynn had fallen and fractured or broken her left leg. For many weeks she had to wear a cast. She’d been walking, or trying to walk; now she reverted to crawling, or dragging her leg along the floor. She wept, she rocked her little body from side to side in the very emblem of child misery. Later it was speculated (by my parents, but also by others) that at this crucial time in her development, whatever progress Lynn had been making—learning to walk, to speak, to communicate—was retarded.
It was said of the afflicted child, She thinks she is being punished. How can we make the poor child understand, she is not being punished? How make her understand, she is loved?
Possibly the heavy cast on Lynn’s leg had something to do with her mental deficiencies, which grew more evident with time. Yet possibly the cast on Lynn’s leg had nothing at all to do with her mental development.
Some years later it would be suggested (by one of the numerous specialists to whom Lynn was eventually taken) that autism is a form of schizophrenia caused by bad mothering.
Bad mothering. It is very hard for me to spell out these cruel and ignorant words.
Carolina Oates, the warmest and most loving of mothers, made to feel by (male) “specialists” that she was to blame for her child’s mental disability!
For years we were distressed by this crude diagnosis. We knew that it was not true—my mother was not “cold and aloof,” as the bad mother is charged—but this pseudoscience was confirmed by the general misogynist bias of Freudian psychoanalytic theory in which the mother (alone) is the fulcrum of harm—the mother who “causes” her son’s homosexuality, for instance. (And what of the father’s role in a child’s development? Has the father no corresponding responsibility, or guilt?) The fraudulent diagnosis hurt my mother terribly, and surely entered her soul. You do not tell a woman who is already distressed by her child’s disability that it is her fault.
So many years later I am upset on behalf of my gentle, soft-spoken, and self-effacing mother, who’d given as much as any mother might give in the effort of a futile and protracted maternal task. My mother was not so much upset as crushed, shamed. And this for years.
Blaming the mother for autism, indeed for schizophrenia or homosexuality, would seem no less reprehensible than the popular treatment of the 1940s and early 1950s for bad behavior of another kind, the lobotomy, now thoroughly discredited.
The misogyny of science, particularly psychology! Those many decades, indeed centuries, when the medical norm was the white male specimen and the female a sort of weak aberration from that norm, when not openly assailed, condescended to, pitied, and scorned. Do you know that the much-revered “father of modern gynecology,” J. Marion Sims (1813–1884), was a doctor who experimented on his African-American female slaves, without anesthetics, over a period of years; that he performed gynecological operations, without anesthetics, on Irish (i.e., non-“white”) women who were too poor and uneducated to protest? By the by, the revered Dr. Sims also experimented on African-American infants. If you know these lurid facts, perhaps you also know that a statue of the father of modern gynecology still stands in Central Park, New York City—indeed, Dr. Sims is the first American physician to have been honored with a statue. And so for me to lament the crude, careless mistreatment of my mother by “specialists” in child development in mid-twentieth-century America in western New York State is surely naive.
Decades later in the twenty-first century a newer, neurophysiological examination of the phenomenon of autism suggests that the condition is caused not by bad parenting of any kind but by congenital brain damage.
Neurochemistry, not bad mothering.
Still, the old misogyny dies hard. You will still find plenty of people, including presumably educated clinicians, who tend to blame the mother for the pathology of the child.
In recent years there has been a populist, antiscientific movement against vaccinations, based on the (erroneous) belief that vaccinations cause autism in young children; more widely, and more convincingly, neuroscientists believe that the causes of autism are manifold: genetics, environment. No single factor will “cause” autism, but there are conditions that are likely to increase the possibility of autism. Yet unaccountably, at the time of this writing, incidents of autism seem to be on the rise in the United States.
Those of us who know autism intimately have long been baffled by high-profile cases of autism in the public eye. Dustin Hoffman in Rain Man, Temple Grandin as author, speaker, animal theorist. Such individuals seem very mildly autistic compared to my mute, wholly disengaged sister, who was never to utter a single coherent word, let alone give public lectures and write best-selling books. (But Temple Grandin’s ingenious “hug box” to hold her, who shrank from human touch and contact, might have been an excellent device to contain my sister’s fits of excitement and distress.)
It is even being proposed, in some quarters, that autism might be celebrated as a kind of neurodiversity. Just as a considerable number of deaf persons do not wish to be made to hear but prefer the silence of sign language to oral speech, so there are those, among them Temple Grandin, who believe that autism should not be eradicated, if any cures might ever be developed.
This is a romantic position, but it is not a very convincing position, for one who knows firsthand what severe autism is. Even if autism could speak, from its claustrophobic chambers, could we believe what it might say? And how responsible would we be, to act on that belief?
3.
In 1971, when Lynn was fifteen years old, my father at last arranged for her to be committed to a therapeutic care facility in the Buffalo area for mentally disabled individuals like herself who had become too difficult to be kept at home. This was a decision very hard for my parents to make, though it would seem, to others in the family, belated by years—long overdue.
One day my sister had turned on my mother in the kitchen. Since neither of my parents wished to speak in any way negative or critical about Lynn, and did not willingly respond to queries about their safety in continuing to keep her at home, I never learned any details of the attack. But I had long worried that something like this might happen, and that my mother, who spent virtually all her waking hours caring for my sister, might be badly injured; or at the very least that my mother would be exhausted and demoralized.
You could not simply say to such devoted parents, But you have to put Lynn in a home! You are not equipped to take care of her.
My normally reasonable father was not reasonable when it came to discussing this domestic crisis. It was not advised to bring the subject up, for Daddy would quickly become defensive and incensed. To speak in even a hushed and apologetic voice was to risk being disloyal, intrusive. The strain on my mother, who was Lynn’s primary caretaker, day following day and week following week for years, was overwhelming; eventually her health was undermined. I would one day learn that my mother was taking prescription tranquillizers to deal with the stress of taking care of Lynn, and this with my father’s approval. My father, of course, spent most of his time at work—out of the house.
By this time my parents were living in a small ranch house they’d had built on the original farm property; the old farmhouse and the farm buildings had been
demolished. My Hungarian grandmother, Lena Bush, had died. My brother Robin—that is, Fred Jr.—was in his late twenties, married, and living some miles away in Clarence, New York. The old life of the farm, the life of my childhood, was irrevocably lost, and in its place, it sometimes seemed, was a surreal nightmare of domesticity: my beloved parents, no longer young, in a single-story clapboard ranch house like so many others on Transit Road, obsessively tending to their mentally ravaged daughter who so uncannily resembled the elder daughter whose place she had taken.
It must have been a relief for my parents, particularly my mother, when Lynn was at last committed to a facility—yet at the same time, a kind of defeat. They had tried so hard to keep their daughter at home; they had not wished to concede that something was wrong with her, and that she might be a danger to others as to herself. They had loved Lynn no less than they’d loved their older daughter and their son, Fred, and this love for Lynn would never abate.
In this facility near Buffalo, which specialized in the care of autistic and other brain-damaged young people, my sister would receive excellent professional care. Eventually she was placed in a group home with five other patients; all were taken by van to a school for the disabled, five days a week, six hours a day. In these highly structured communities it is said that the mentally disabled are happiest.
It is the exterior world that distresses them, the world inhabited by their “normal” brothers and sisters. For in their confined world they are safe and at peace.
I would think she has a horrible life but she does not seem sad—so my brother has said.
The shiny helmet looks heavy and unwieldy but in fact it is made of a very light plastic. The interior is padded and is (said to be) comfortable, like the interior of a bicycle helmet. The chin straps are easily adjustable and (it is said) not likely to cause strangulation or injury except in the most freakish of circumstances when the afflicted individual is bent on injuring himself.
At some point in adolescence Lynn began to suffer seizures that resembled epileptic seizures. Though these are controlled to a degree by medication, she is obliged to wear a safety helmet at all times except when she is secure in her bed.
Doctors have said, She isn’t angry. As we understand anger.
Carefully they have said, Your sister does become frustrated. It is typical of those with her condition, to become frustrated. Her face is sometimes contorted in what appears to be a look of rage or anguish but it is not a psychological or emotional expression of the kind one of us might feel. It is an expression caused by a muscular strain or spasm in the face.
Do not think that it is hostility directed toward you.
Do not think that she is aware of, or in any way responding to, you.
Across this abyss, there is no possibility of contact.
It is romantic to think so. It is consoling to think so. And so my parents never gave up hoping, and perhaps (they imagined) they were able to bridge that abyss. Certainly they brought Lynn home with them every Sunday without fail until they were too ill and too elderly to do so, even after she began to have seizures occasionally, and had to wear her safety helmet at all times during the day; even when it was clear that she did not know them and that after a while in their house, always kept clean and tidy before her arrival, she began to fret with discomfort, wanting badly to be returned to the facility that was now more familiar to her, and more, if she’d had a word for such a place, her home.
No one would have wished to contest my parents’ conviction that they could communicate with their younger daughter. Nor did they speak of it. Their love for this daughter was intensely private, even as it appeared to be, to others in the family, infinite in its patience, generosity, fortitude. This is what is meant by “unqualified love”—that does not diminish over time. It is heartrending to think that my parents loved my brother and me in this way also, not more than they loved our sister but surely not less, and not because of religious conviction, or even ethical principle, but because this was their nature.
A parental love as natural as breathing, or dreaming.
Your sister has never once acknowledged you.
Your sister has never once looked at you.
Your sister has never once glanced at you.
Your sister has no idea who you are, what you are.
That you are, that you exist, your sister has no idea.
No idea that anyone else exists, as she can have no idea that she herself exists.
If there is a riddle, your sister is the riddle.
Here is the tough nut to crack. The koan.
Disconcerting how with her dark-brown eyes, wavy dark-brown hair, and pale skin, your younger sister so resembles you.
Anyone who sees her and sees you—looks from one to the other—feels this frisson of recognition: how your sister who is eighteen years younger than you and who has never uttered a word in her entire life so strikingly resembles you.
She will not meet your eye no matter how patiently, or impatiently, you wait. For she is not like you.
She is an individual without language. It is not possible for you to imagine what this must be, to be without language.
For nearly sixty years she has lived in silence. She does not hear the voices of others as we hear voices; but she has learned to hear in her therapeutic classes at the facility. Her own speech is grunts, groans, moans, whimpers, and cries of frustration and dismay. She does not laugh; she has not ever learned to laugh.
In the presence of the brain-damaged we find ourselves in the Uncanny Valley. It is we who are made to feel unease, even terror. I am made to feel guilt—for I have had access to language, to spoken and written speech, and she has not. And this, by an accident of birth.
Not what we deserve, but what is given us.
Not what we are, but what we are made to be.
I have not seen my afflicted sister since 1971, when she was fifteen years old. Tall for her age, wiry-thin, gangling, with pale skin, an expression on her face of anger, anguish—or as easily vacancy and obstinacy. A mirror-self, just subtly distorted. Sister-twin, separated by eighteen years. Though I have thought of Lynn often in the intervening years, I have not seen her; initially, because my parents would not have wished this, and eventually, because such a visit would be upsetting to her, as to me. And futile. She would not know me, nor even glance at me. What I would know of her, I could not bear.
It is difficult to imagine a mouth that has never uttered a single word, and has never smiled.
Eyes that have never lifted to any face, still less locked with another’s gaze.
All literature—all art—springs from the hope of communicating with others. And yet there are others for whom the effort of communication is not possible, or desirable.
Seems like she doesn’t know we’re here.
What do you think she is thinking?
Perhaps this is the unanswerable question: Does the brain think?
If the brain is sufficiently injured, or undeveloped: Can the brain think?
In itself, perhaps the brain does not think; it is the human agent within the brain, which some have called the soul, that thinks. And yet—can a soul, or a mind, be differentiated from its brain? We speak of “our” brain as if we owned it, in a way; as we might speak of “our” ankle, “our” eyes. But such common usage is misguided, perhaps. We are nothing apart from our brains, thus it is our brains that think. Or fail to think.
Obviously, our brains generate consciousness—but this is an unconscious process. We are habituated to believe, at least in our Western tradition, that “we” are located somewhere inside our brains, behind our eyes; for it is our eyes “we” see through. When we look into the eyes of others, as we speak to them, we are looking “into” the brain, that is, the core of personality—or so we think. (It is unnerving to think that just as our personalities reside in an organic, perishable brain, in some infinitely vast network of neurons beyond all efforts of tracking, the personalities of others reside
in a similar place.) Except, of course, in some individuals, there is no eye contact—the brain refuses to function in accord with our expectations.
In April 2014, fourteen years after our father’s death, in response to a query, my brother brings me up-to-date on our sister’s condition, which seems unchanged: Lynn is totally nonverbal and does not talk at all. She has frequent seizures and wears a helmet at all times to protect her when she falls . . . She does not recognize me nor do I think she recognizes anyone at all. She is shy, and does not like it when her routine is changed.
It would have startled and displeased my parents, if I’d suggested going to visit Lynn in her facility; it would have seemed intrusive to them, for they would have surmised that if I visited my sister, it might be for the purpose of writing about her; and they would not have wanted me to write about her, not then, not ever. And so I had not ever inquired about visiting her—though I had many times fantasized about visiting the now-adult woman who very likely closely resembles me as I would have been if at birth some neurological catastrophe had occurred to render my brain impaired. And after sixty years, as I contemplate visiting Lynn at last, with my brother Fred, I feel faint with dread, and guilt.
For the fact is, the visit would not benefit Lynn, only me. The visit would be intrusive and upsetting to her, who is upset by any break in her routine. Only my brother has visited Lynn, in the years since my parents’ deaths. But Lynn does not recognize him, has no awareness of him, and for him too such visits are futile; except as Fred Oates Jr. is Lynn’s guardian, he has no role in her life. Yet my brother has (heroically, I think) acquitted himself fully as her guardian, and has borne the responsibility he’d accepted at my father’s request.
“Help us name your baby sister, Joyce.”
It was a festive time. It was, in fact, my birthday: my eighteenth birthday. I had not been forgotten after all.
The Best American Essays 2016 Page 26