“How functional will she be?” Priscilla, the intern on the pediatric surgery team, asked. Her question was for Rick, our senior resident. We had just left the room of an infant who was a few days post-op from heart surgery. The girl’s name was Madison. She had Down syndrome. I was still a fourth-year medical student—a subintern in this small clump of young doctors in green scrubs and white coats, walking down the hallway of the pediatric ward.
I hadn’t told the team that my one-year-old daughter had Down syndrome. Some of my classmates knew. But on the pediatric surgery service, I was the only fourth-year student. I’d kept my mouth shut about my personal life.
Madison was recovering from a VSD repair—an operation which involves cutting the breastbone in half, stopping the heart, slicing it open, and sewing a small patch over a hole in the wall between the bottom two chambers of the heart. Heart defects are more common in children with Down syndrome than those without it. Unlike Madison’s, Sarah’s heart defects were small and unlikely to cause her any problems.
We were on work rounds: our attending—a professor of pediatric surgery—wasn’t with us. I liked work rounds because they were less formal, and you could ask a question without feeling stupid. You got the real scoop.
“If things go well,” Rick, the senior resident said without breaking stride, “the only thing left will be the scar. Maybe a faint murmur that no one can hear.” He flipped the three-by-five card to the back of his sack. “Next we have . . .”
“What I mean is,” Priscilla stopped walking. “With the Down syndrome. How functional will she be?”
“She’ll make a good pet.” Rick didn’t slow his pace.
In the movies, the dad of a child with Down syndrome would never let a comment like “She’ll make a good pet” go by uncontested. Movie dads say things like, “In our house, we call it Up syndrome.” The Hollywood dads celebrate each small triumph. First smile, first word, and first awkward step. A tear may streak down his cheek as he picks up a small crutch or tucks his child in at night, but a Hollywood dad is never ashamed of a special needs child.
Of course, some movie dads are louts. During the opening credits a father may abandon the damaged child, so the audience can settle into a story about a single mom who faces the challenges of a special-needs child alone. We like to think we’d be like her: loving and strong. We know we’d never look as good as a Hollywood mom, her morning hair never messy, as she stands in her robe, clutching her child to her chest. But we would hold our baby and claim her with the same fierce love.
Rick stopped at room 534. One of my patients. He looked at each of us, his eyebrows raised. Rick was always clean-shaven and had meticulously brushed hair, no matter the time of day or night. He had a Mont Blanc pen and a stainless steel diver’s watch with dials and bezels and a heavy steel band. He used a Littmann Cardiology III stethoscope—three hundred dollars. Most of the residents used the fifty-dollar scope they’d bought in medical school.
“This one’s mine,” I said. The prevailing wisdom among the residents was, Give me a medical student who doesn’t triple my work, and I’ll kiss his ass. I had no illusion about how little I knew about the practical things of medicine. I just hoped not to embarrass myself. “Post-op day three,” I started off. “Status-post resection of intussusception, end-to-end anastamosis. Doing well.” If Rick wanted more information, I was ready. I had most of the lab values committed to memory, and all of them were on my three-by-five card. I could feel my heart beating faster.
He made a rolling motion with his hand to tell me to keep going.
“Labs look good, incision is clean. We’re waiting for flatulence, and will start clear liquids as soon as we hear it.” Priscilla, my intern, had prepped me well. As her medical student, I fetched her things: tracked down x-rays and lab reports. She liked Diet Coke. I brought her one if I went to the cafeteria on a coffee run. She, in turn, taught me how the ward worked: how to give just the right amount of information to an attending, a senior resident.
Rick nodded, satisfied. He slipped the card to the back of his stack and started walking. We followed. Rick was blunt, but he wasn’t a bad guy. He wouldn’t have made the comment about the child with Down syndrome being a good pet if he’d known about my daughter.
A month previously, when I was rotating through internal medicine, I took care of an eighty-nine-year-old woman from a nursing home. She had stopped eating and drinking. Her closest relative, who lived in another state, insisted that the doctors do everything possible to keep her alive. A general surgeon made a hole in her abdominal wall and poked a thin rubber feeding tube into her stomach, and stitched it in place.
Contractures pulled the woman’s arms and legs into an inflexible fetal pose. Pale skin was stretched tight against her elbows and knees. Bedsores from the nursing home eroded the flesh at her hips, all the way to the bone—big red craters with a thin, bubbly yellow drainage that smelled of rotten meat. Her eyes were open, but they never moved or blinked beneath the delicate curve of the bony orbits of the eyes.
In spite of the feeding tube, she continued to lose weight. The contours of her skull were starkly visible; the zygomatic arches were prominent over her sunken cheeks. Her papery, hooded eyelids were wrinkled like a lizard’s, and her corneas were a milky white. Her tongue and lips were dry and cracked. She had one lone tusk of a yellow canine tooth. The bones of her back lined up precisely, like the tines of an abandoned farm machine. Thin, dark stool leaked from the edges of her blue plastic diaper.
I tried to imagine what she had been like twenty years ago, when she could still talk and laugh, and track with her eyes the movement in the room. But when I knew her, the only movement was her breathing—as regular as a slow-moving piston, a wheezing sound, accompanied by the rattle of a stubborn chunk of phlegm. Her skinny shoulders hunched in rhythm with her breathing.
She didn’t seem human.
But who was I to say that someone was not human? Isn’t that what Hitler said about the Jews and what segregationists said about African Americans: They are a different species. Sub-human. But standing in that room, permeated by the scent of talcum powder and liquid stool, the woman’s desiccated body seemed little more than the husk of a person.
I did what I could. I gave her intravenous fluids and monitored her electrolytes: sodium and potassium. I carefully tracked the blood urea nitrogen and creatinine. Her care became an exercise in fluid and electrolyte balance. Too little fluid, and she might go further into kidney failure. Too much fluid, and it would overload her heart, and the fluid would back up into her lungs.
Twice a day I listened to the steady thump of her heart and the rattling excursions of her lungs. When I touched her, I did so gently. I spoke to her in a soft voice, hoping that she would understand the tone, if not the words. Then I’d hustle on to the next patient, glad to be free of her rasping presence. Otherwise, I avoided seeing her.
John Locke, in his Essay Concerning Human Understanding, published in 1690, wrestled with the question of what makes us human. In doing so, he laid the groundwork for modern psychology.
I admired Locke and was inclined to agree with most of what he wrote. He was a physician, studied respiration and circulation, and he knew men like Robert Boyle, Thomas Willis, and Robert Hooke: giants in science and medicine. Locke’s philosophical writing started the Enlightenment and his political writing shaped the American Constitution. Voltaire was a fan: “Perhaps no man ever had a more judicious or more methodical genius, or was a more acute logician than Mr. Locke.”13
In the Essay Concerning Human Understanding, Locke discussed the differences between humans and other animals—horses, donkeys, monkeys, parrots, and oysters—and concluded that the ability to understand abstract ideas makes a human’s soul different from a beast’s. A dog, for instance, may recognize his owner, but would not be able to understand the abstract notion of ownership.
“Beasts abstract not,” he wrote.
As Locke teased out the subtleties of the argument, he used the insane and imbecilic as test cases. He considered the minds of imbeciles as being too sluggish and clumsy to generate abstract thoughts. The insane, he thought, had active, nimble minds, and were able to join two simple thoughts to form a more complex and abstract one, but they did so imperfectly. He implied that the insane seemed closer to being fully human than the imbecilic.14 “What will your driveling, unintelligent intractable Changeling be? Shall a defect in the Body make a Monster; a defect in the Mind, (the far more Noble, and in the common phrase, the far more Essential Part) not?”15
It’s not surprising that a man with a knack for abstract thought might choose reason as the dividing line between human and less than human. A poet may just as easily assert that expressing oneself in metered verse is the truest test for someone’s humanity. A musician may consider perfect pitch the sine qua non, and an NBA star may feel that hitting a half-court shot at the buzzer is the pinnacle of human achievement: humanity’s truest test.
The suspicion that Locke would consider my daughter less than human was like a splinter in the sole of my foot as I winced through the rest of his essay, head down, feeling defensive for my child who’d be fenced in with the horses, parrots, and oysters of John Locke’s schema.
I tossed the book aside. Fuck John Locke. And fuck his “Beasts abstract not.” Sarah might never be an abstract thinker. She might track more toward the physical and practical. The earthbound. She might not be able to compute the degree of consanguinity between aunts and uncles, nieces and nephews, but on a family beach vacation, at the age of twenty-two, she would bring along a suitcase of clothes and DVDs for herself and a duffel bag filled with plastic buckets and shovels and toys for her younger cousins.
In Tolstoy’s The Death of Ivan Ilyich, the dying magistrate found no enlightenment through words or abstract thoughts: simple acts of kindness from a peasant, and a wordless kiss from his son, pulled Ivan into his full humanity. His redemption came through human touch.
My infant daughter showed her humanity in the way she reflexively grasped my finger in her palm. Later, she would show it in the way she slumped up against me sitting on the couch, or wrinkled her nose when she heard a bad pun. Sarah frowned as she read the label of a container of food, looking for wheat or gluten, to which she was allergic. I didn’t need John Locke to tell me if my daughter was human.
But a near-moribund nursing home patient with a thready pulse and rasping respirations, lying in an oversaturated adult diaper? Is she fully human? Or the brain-dead patient in the neurosurgery ICU, a machine pumping air through a tube in his windpipe, his nourishment coming from a tube jabbed down into his stomach, and his urine draining out from a tube snaking up through his penis and into his bladder?
In his book Less Than Human: Why We Demean, Enslave, and Exterminate Others, David Livingstone Smith examined the phenomenon of dehumanization.16 Early in the work, Smith quoted the cultural anthropologist Franz Boas: “Among many primitive people, the only individuals dignified by the term human beings are members of the tribe. It even happens in some cases that language will designate only tribal members as ‘he’ or ‘she,’ while all foreigners are ‘it.’ They are objects or animals.”
Smith mentioned that many Native American tribes referred to themselves as “the human beings”: Apache, Cheyenne, Chipewyan, Comanche, Yurok, Innu, Klamath, Gwich’in, Mandan, Navajo, Ute. Woven into the language itself was the assumption that all other tribes, all other people, are something other than human. Contemporary German language has a similar construct: Deutsch is derived from an Indo-European word meaning “human beings.” Smith came to the conclusion that the impulse to dehumanize others is “grounded in biology, culture, and the architecture of the human mind.”
If we are quick to see people from other tribes as subhuman, what about people with physical deformities? When we see a typical newborn—with ten precise little fingers and toes, such well-formed lips and eyes—we marvel. A coworker brings an infant to work, and we gather around to admire the child. We whisper in her presence, transfixed by the flawless tiny eyelashes, the perfect little nose.
But a child with a deformity? We try not to gasp, or stare. In Mesopotamia, the fertile land between the Tigris and the Euphrates, humans made the first written record of a birth defect. Scribes recorded what the priests dictated: congenital defects were just one of many types of omens available for analysis. Divination. Prophecy. The flight of a bird, the shape of smoke rising in the air, the liver of a slaughtered lamb, the movement of the stars and moon—each event carried information from the gods.
The births of anomalous children were recorded in cuneiform letters pressed into tablets of clay. Following each description was the interpretation, the prophecy.17
When a woman gives birth to an infant that has the ears of a lion, there will be a powerful king in the country.
When a woman gives birth to an infant whose nostrils are absent, the country will be in affliction, and the house of the man will be ruined.
If a woman gives birth to twins joined back to back, the gods will abandon the country, the king and his son will abandon the city.
King Ashurbanipal’s royal library in Nineveh, in the eighth century BC, included four tablets of omens relating to sixty-two human congenital malformations, and what each malformation portended. There is no record of the Babylonians killing handicapped children.18
This notion—that a congenital defect is a portent, or a warning from the gods—appeared in later cultures as well. The root of the word “monster” is the Latin word monstrum (portent, warning, aberrant occurrence) from monere (advise, warn). “Monster” meant birth defect. Unlike the Babylonians, the Greeks and Romans sacrificed their monstrous newborns in the hope of appeasing the gods.
In the Middle Ages, children with defects were thought to be the result of sex with animals, or demons, or Satan himself. Martin Luther (1483–1546), when asked about a twelve-year-old with bizarre behavior, suggested that she was a changeling (the child of a demon that had been swapped for a normal child) and could therefore be drowned, because she did not have a soul.19
Michel de Montaigne (1533–92) had a different take on “monstrous” children. Montaigne is considered by many to be the father of the modern essay, and his Essais—French for “attempts” or “trials”—followed wherever his thoughts took him.20 In the two-page piece “Of a Monstrous Child,” he related his experience of seeing a pair of twins conjoined at the chest: one head, two lower bodies. “In all other respects,” Montaigne wrote, “he was of ordinary shape; he could stand on his feet, walk, and prattle about like others of the same age. He had not been willing to take any other nourishment than from his nurse’s breast; and what they tried to put in his mouth in my presence he chewed on a little and spat it out without swallowing. There seemed indeed to be something peculiar about his cries. He was just fourteen months old. Below the breast he was fastened and stuck to another child, without a head, and with his spinal canal stopped up, the rest of his body being entire. For indeed one arm was shorter, but it had been broken accidentally at their birth. They were joined face to face, and as if a smaller child were trying to embrace a bigger one around the neck . . . thus the connection was between the nipples and the navel. The navel of the imperfect child could not be seen, but the rest of his belly could. In this way all of this imperfect child that was not attached, as the arms, buttocks, thighs, and legs, remained hanging and dangling on the other and might reach halfway down his legs. The nurse also told us that he urinated from both places.”
Montaigne described the child for a few more lines, and then wrote:
This double body and these several limbs, connected with a single head, might well furnish a favorable prognostic to the king that he will maintain under the union of his laws these various parts and factions of our state. But for fear the event should belie it, it is better to let it go its way, for there is nothing like divining about things past. So that, when things have happened, by some interpretation they are found to have been prophesied. [Cicero]. As they said of Epimenides that he prophesied backwards.
“I have just seen a shepherd in Medoc,” Montaigne continued, “thirty years old or thereabouts, who has no sign of genital parts. He has three holes by which he continually makes water. He is bearded, has desire, and likes to touch women.” Montaigne goes on:
What we call monsters are not so to God, who sees in the immensity of his work the infinity of forms that he has comprised in it; and it is for us to believe that this figure that astonishes us is related and linked to some other figure of the same kind unknown to man. From his infinite wisdom there proceeds nothing but that is good and ordinary and regular; but we do not see its arrangement and relationship. What he sees often, he does not wonder at, even if he does not know why it is. If something happens which he has not seen before, he thinks it is a prodigy [Cicero]. . . .
We call contrary to nature what happens contrary to custom; nothing is anything but according to nature, whatever it may be. Let this universal and natural reason drive out of us the error and astonishment that novelty brings us.21
Where Locke created an abstract line between humans and beasts, Montaigne challenged us to question our assumptions about what we observe around us. He suggested that all of us are “good and ordinary and regular,” if perceived correctly.
In 1641, a one-eyed pig was born in New Haven, Connecticut. A local swineherd had the misfortune of having “one eye for use, the other hath (as itt is called) a pearle in itt,” and the townspeople thought that the young man’s opaque eye resembled the eye of the malformed piglet, and came to the conclusion that the cycloptic pig was the result of an “unnatureall spell and abominable filthyness” of the swineherd. The young man’s trial lasted from 1641 to 1642. He was executed on April 8, 1642. They killed the pig by running a sword through it, in front of the young man, just prior to his execution.22
Club feet, shortening of the upper extremities, long and deformed ears, syndactylism (fused toes or fingers), were all thought to be proof of Satanic origin.23 In Copenhagen in 1683, a girl who gave birth to a monster with “a cat’s head” was burned alive.24
Even in modern times, some people see a message from God in the physical traits of newborns. In February 2010, Virginia state delegate Robert Marshall said that God punishes parents who have had abortions by making subsequent children disabled. After an outpouring of anger from parents of children with disabilities, he apologized and said that his remarks had been misconstrued.25 As a politician, he pretty much had to; most people these days see a birth defect as a medical condition, not a message from God. Of course, after reading Montaigne, one might question the very notion of “birth defect”: “We call contrary to nature what happens contrary to custom; nothing is anything but according to nature, whatever it may be. Let this universal and natural reason drive out of us the error and astonishment that novelty brings us.”
But what about severe defects? Sally told me of a malformed child she saw when she was working on the labor and delivery ward: the intern delivered the baby and then the placenta, and left the room without speaking. The intern couldn’t help it: she had begun to vomit behind her surgical mask. “The baby was an anencephalic.” Sally placed her hand even with her eyebrows. “Nothing above here, except a mass of pulpy red tissue. The intern’s hands mushed right into it.”
There’s a website with information on anencephaly, written by parents of children with the condition.26 They tell the stories of pregnancy and birth. There are photographs of mothers in patterned hospital johnnies and fathers in green OR scrubs cradling their stillborn or soon-to-die infant. The infants all wear the small knit caps that newborns wear, covering the absence of the top half of the head. In most of the snapshots the mother and father manage to smile.
Science has freed most of us from medieval superstition: we no longer burn a woman at the stake for giving birth to a child with anomalies, and parents can hold a child with anencephaly without the risk of execution for “abominable filthyness.” For this we can thank scientists like Tjio, who gave us the first clear photograph of a human karyotype, and doctors like Gautier and Lejeune, who discovered the link between Down syndrome and trisomy 21.
But the division Locke proposed between “humans” and “beasts [who] abstract not” continues to echo in the modern geneticist’s division between “normal child” and “abnormal fetus,” as if there is a binary system, like a light switch that is either on or off. But human qualities exist on a spectrum. Whether we measure IQ points, the amount of melanin in the skin, or some degree of “ability,” human characteristics are rarely all or none. What is it that compels us to draw a line beyond which we consider someone else abnormal?
During the rest of work rounds Rick listened intently to every detail of each patient’s status, and made suggestions on what we should do next—advance the child’s diet from clear liquids to a mechanical-soft diet, or check a child’s electrolytes. As we walked from room to room, he joked with the team and talked about basketball.
When we finished work rounds, we split up to write orders, check on x-rays, and follow up on lab results. I thought about going back to Madison’s room, maybe show her mom a picture of my daughter, Sarah—the one in which she is putting on an extra-large Santa hat, the red velvet and white fur trim dwarfing her face. And I could tell her about another mom I knew, with a daughter named Clarissa; we’d met her at a Down syndrome support group.
Clarissa had had a VSD like Madison’s. One surgeon, a caring man who listened well, had told Clarissa’s mom that she was too young for the surgery, that she should wait several months. At a different hospital, and after a very brief assessment, another surgeon told her that it was dangerous to wait; Clarissa would get weaker the longer they delayed. This second surgeon was young and cocky and wore French cuffs with gold cufflinks under his white coat, and a gold Rolex. Clarissa’s parents lived in the country, and grew their own organic vegetables. They mistrusted Western medicine. Clarissa’s mother didn’t like the young guy’s Brooks Brothers wardrobe or his manner of speaking, which seemed offhand, almost flippant. But his confidence was compelling. They scheduled the surgery.
Clarissa’s mom talked about her post-op course in terms of miracles: Clarissa began to breastfeed more vigorously, and gained weight quickly. She had better muscle tone. “And within a few weeks, her hair started growing. All this came out so suddenly,” she said, fluffing Clarissa’s hair. “I hadn’t expected that.”
I walked past Madison’s room without stopping. My thoughts were too confused and my feelings too close to the surface to risk talking with the girl’s parents.
When the surgical team was on teaching rounds—when an attending was with us—we all trooped into the room and the resident presented the patient: a few salient points about the history, the surgical procedure, and the status of the child. Most of the patients on this ward had a problem with a single organ: a heart defect to patch, a tight place in the digestive tract that required excision. With successful surgery, they would lead normal lives.
We spoke in lowered voices. Sometimes the mother’s eyes would glance from her infant lying in the hospital bed to each of us. When it happened, I never knew what she was looking for. Reassurance? Connection? Perhaps she was hoping for some sign that her child was more than just an illness, an anatomical abnormality.
We stood mute, and listened. The attending would usually touch the child: either listen to the chest with a stethoscope, or peel back a bandage to look at the wound. Then he would nod, and we’d all walk out. He’d always pause at the door and speak with the mother. Out in the hallway, he’d ask us questions, to find out what we knew and didn’t know, about this particular case or the disease process in general. He’d then ask the senior resident to explain it to us. Although being put on the spot in front of our friends and peers was miserable, it wasn’t nearly as bad as meeting the gaze of a worried mother.
The next morning, on attending rounds, we filed into Madison’s room. She looked like a small, frail version of my daughter—the same gentle slant to her eyes, the same small nose.
Rick gave a brief summary of the girl’s post-op course. Dr. Rankin, the attending, bent over and listened to the heart. The girl’s mother watched.
“Sounds good,” he said, folding his stethoscope and slipping it into the pocket of his long white coat.
The girl’s mother smiled and then glanced at each of us. Her eyes met mine. I wished there were a secret handshake, or a coded message I could give her. My daughter has Down syndrome too. But I was still uncertain of my role—I wasn’t a doctor yet and I didn’t know how much self-disclosure was acceptable. Sometimes the boundaries serve the doctor; sometimes they serve the patient. In this case, I didn’t know which was which.