The Best American Essays 2016 Part 10

No. I can't speak of her.

It is not possible. The words are not available.

As she has no speech, so I have no ready speech to present her.

I am not allowed to "imagine"-and so, I am helpless.

There is no way. There is no access.

There is only distance, as across a deep chasm.

If there is a way it is oblique, awkward.

It is the way of one foot in front of another, and another-plodding, cautious of the steep fall.

It is not exactly cowardly-(I suppose: for if I were cowardly I would never undertake such a hopeless task but flee from it)- but it is cautious. It is not the sort of pain that becomes pleasurable.

Reckless to press forward when you know you will fail and yet- you cannot go forward except by this route.

You cannot pretend: your sister was never born.

Spoken quickly and carelessly, autistic can sound like artistic.

It was not really true that I'd fled to college. More accurately, it was time for me to depart, and so I departed.

And after I graduated from college, I went to graduate school at the University of Wisconsin at Madison, where I met, fell in love with, and married Raymond Smith. And so I never came home again to live in Millersport.

At the time it wasn't known-it was not yet suspected-that my sister would have severe "developmental disabilities." For such suspicions are slow to manifest themselves in even the most alert, responsible, and loving parents.

After five or six years, when my husband and I were living and teaching in Detroit, I began to hear that my parents were taking my sister to doctors in the Buffalo area, having been referred by her Lockport pediatrician, who understood that there was nothing he could do, nor even confidently name.

Lynn doesn't look at us. She doesn't talk, or try to talk.

She doesn't seem to recognize us. She will only eat certain foods.

She is getting to have a bad temper.

The term r.e.t.a.r.ded might have been suggested. But never did I hear that word spoken in our household, nor did I ever speak this term in any way a.s.sociated with my sister.

There may have been a taboo of sorts, against the articulation of this word with its a.s.sociations of poverty, ignorance, dementia. A crude word sometimes used as an epithet of particular cruelty.

Eventually, the diagnosis "autistic" came to be spoken. (By my father, gravely. So far as I knew my mother would not ever utter this word, which would have greatly pained her.) Not much was known of autism at this time (in the mid-1960s) but there was a distinction between autism and mental r.e.t.a.r.dation that seemed crucial to maintain.

For mental r.e.t.a.r.dation was not uncommon in the North Country in those years. I have not spoken of the numerous examples of "r.e.t.a.r.ded" persons I'd encountered in the vicinity of Millersport and in Lockport, mostly school-age; how there would seem to have been a disproportionate number, compared to my experience elsewhere, later in my life; so that, when I think of mental r.e.t.a.r.dation, immediately I am thinking of certain rural families, and of their offspring, routed into special education cla.s.ses in school, and generally shunned, avoided, or in some unhappy cases teased and tormented by the presumably normal.

In the Judd family, for instance, there was very likely mental r.e.t.a.r.dation. But I did not want to dwell on this likelihood in writing about my friend Helen Judd, for that was not my subject; that mental r.e.t.a.r.dation, s.e.xual abuse of children, and incest were related in crucial ways seems to us obvious, but requiring greater length and s.p.a.ce to examine.

My grandmother Blanche Morgenstern did not seem to accept the diagnosis of autism, in fact. It seemed to be her (implicit, unargued) conviction that there was nothing seriously wrong with her younger granddaughter. Year following year she took the Greyhound bus from Lockport to visit her son's family in Millersport, and with each visit she brought a present for Lynn, as she'd once brought presents for me-coloring books, Crayolas, picture books; each present, as my brother dryly remarked, our sister destroyed within a few minutes, with varying degrees of fury.

What will become of Lynn, do you think?

What will become of Mom and Dad?

It may be difficult for others to understand that very little of this was ever discussed in our family, at least not among my parents and my brother and me. By degrees Lynn Ann became my parents' unique and in a way sacred responsibility, as it is said children afflicted with Down syndrome are particularly loved by their parents; not as a problem but as a sort of gift. You might ask after Lynn in the most casual and sunny of ways-"How's Lynn?"-and the answer was likely to be "Good." But the matter of Lynn Ann Oates was a private one, and such privacy was inviolable.

None of my friends from high school or college would ever meet my sister. My husband would never meet my sister. For nearly fifteen years my parents lived in a kind of quarantine with my sister; few people visited them, for few would feel comfortable in a setting in which a seemingly deranged/r.e.t.a.r.ded girl roamed freely, running in and out of rooms. Or perhaps my parents simply didn't want anyone to visit, which is equally likely.

Until her final illness, my grandmother Blanche continued to visit Millersport bearing her symbolic gifts. My grandmother deeply loved her son and his family, for she had no family otherwise; what we knew of her remarriage, after her young, handsome Irish husband Carleton Oates had abandoned her decades before, did not seem happy, and did not bear examination. (Is it my family's reticence, or is this not-wishing-to-violate-another's-privacy commonplace?) Perhaps it was an expression of love, respect, dignity that you did not ever ask any question that would embarra.s.s another or suggest that a facade of domestic happiness was not altogether sincere.

Certainly no one spoke of Lynn in any way other than casual. In my memory, any discussion of Lynn was not welcomed at all.

What will become of us! We are badly in need of help.

Foolish to have left my paperback copy of Henry James's The Golden Bowl on a table in my parents' living room. I'd come home to visit for a few days and, unthinking, left some of my books where Lynn could find them. All the books were destroyed but it's only The Golden Bowl I recall, the irony, the pathos, James's great web of words, printed words, as inscrutable to my sister as Sanskrit would be to me, and for that reason richly deserving of destruction.

Or, more plausibly: my rampaging sister destroyed the book not knowing it was a book or even that it was Joyce's book but only that it was an object new in the household, therefore out of place, offensive to her sense of decorum and order.

It is painful to recall: my sister would tear pages in her fists, she would tear at the pages with her teeth. She would make high-pitched strangulated cries, or she would grunt, in her misery, frustration, desperation. She would not ever-not once-so much as look at me, though she must have sensed my presence.

(Though she could not have known how uncannily she resembled me, and I resembled her. Like twins separated by eighteen years.) It was inanimate objects my sister would attack, generally. She would never attack me.

(And yet-one day she might have attacked me. As a p.u.b.escent child, older, taller, stronger, very likely Lynn would have attacked me, as she would one day attack my mother.) How vivid it is still, the ravaged copy of The Golden Bowl with its eloquent, elaborate, and all but impenetrable introduction by R.P. Blackmur. Badly torn, and the lurid imprint of small sharp teeth on what remained of the pages.

"Oh, Lynn! What did you do."

I was acutely aware of my mother in the kitchen doorway a short distance away, who'd come to see what was wrong. If words were exchanged between my mother and me at this time I have forgotten them.

Very likely my mother had suggested that it was my own fault for having left the books in that vulnerable place where Lynn would find them. And of course this was true. If there was fault here, it could only be my own.

In the kitchen my excited sister was on her feet but hunched and rocking from side to side making her strangulated Nyah-nyah-nyah sound. It was not laughter, and it was not derisive or taunting-it was purely sound, and meaningless. At this time Lynn might have been eight, nine, ten years old-a child who grew physically, but not mentally.

The confrontation with The Golden Bowl had been the child's triumph but it had left her dangerously overexcited; there was the danger that she might attack something else now, or someone.

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 r.e.t.a.r.ded.

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 psychoa.n.a.lytic theory in which the mother (alone) is the fulcrum of harm-the mother who "causes" her son's h.o.m.os.e.xuality, 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 h.o.m.os.e.xuality, 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 a.s.sailed, condescended to, pitied, and scorned. Do you know that the much-revered "father of modern gynecology," J. Marion Sims (18131884), 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?

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 circ.u.mstances 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, fort.i.tude. 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 cla.s.ses 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.