Homer and Herodotus, Sophocles and Plato, Aristotle and Dante, Shakespeare and Milton. All names engraved in the edifice of Columbia’s Butler Library. They may be “dead white men,” but to undergraduates in the 1960s, they seemed very much alive in the classes where we engaged their texts and debated their ideas. The skills in thinking that we sought could be applied to professions like law and medicine and finance, but we felt the pure scholarship of our professors was the pinnacle of intellectual life.
Some forty-five years later, students still begin their education at my alma mater with the Iliad. But the competition to read it on Morningside Heights has become much more fierce. Freshmen are drawn from a pool of applicants with stratospheric SATs and near-perfect GPAs, winners of Intel competitions and math olympiads.
Rachel Adams is a professor of English and American studies at Columbia, each day facing such high-achieving young men and women. She describes herself as similarly driven, an academic who grew up with chamber music concerts in the living room and fell in love with a fellow teaching assistant at a lecture class on Shakespeare. Adams explored the phenomenon of freak shows in the United States. This work led to a critically acclaimed book, Sideshow USA: Freaks and the American Cultural Imagination. Its stylized prose, broad generalizations, and detached perspective are typical of much academic work today:
Although they have often been treated as an ephemeral form of amusement, freak shows performed important cultural work by allowing ordinary people to confront, and master, the most extreme and terrifying forms of Otherness they could imagine, from exotic dark-skinned people, to victims of war and disease, to ambiguously sexed bodies. In a nation that prides itself somewhat contradictorily on its affirmation of individuality and its ability to assimilate differences, the freak show has political and social, as well as psychoanalytic significance…. The sideshow platform is both a source of entertainment and a stage for playing out many of the century’s most charged social and political controversies, such as debates about race and empire, immigration, relations among the sexes, taste, and community standards of decency.
Adams married her fellow teaching assistant Jon Connelly, who ultimately left academia and became a lawyer, in part to serve as the primary breadwinner for the family. Their first child, Noah, was born when Adams was thirty-six years old. Because of her age, she underwent a comprehensive series of tests for birth defects, including amniocentesis, in which a needle is introduced through the abdomen to draw out fetal cells for direct examination of any chromosomal abnormalities. Noah is a healthy child, and as school approaches, he undergoes a series of standardized exams:
We knew they measured little more than whether he was good at taking tests. That, and whether his parents and teachers had put him through the battery of expensive practice materials sold by test prep companies promising to give your child an extra edge. We knew it, but refusing to test seemed futile, since we also knew that good scores would give us the best possible chance of finding a kindergarten that was right for him.
Noah’s IQ score places him among the “gifted,” a clever and capable boy who will readily fit into the world of Manhattan’s Upper West Side. A few years later, Adams again becomes pregnant. She expects a sibling similar to Noah. Initial prenatal testing is reassuring, the chances that anything might be wrong with the baby on the order of 1 in 2000. For that reason, Adams and Connelly decide to forgo the invasive procedure of extracting fetal cells. Henry, her second son, is born with an extra twenty-first chromosome. As a result, he has Down syndrome.
Raising Henry is written as an unfolding personal history. For such an account to succeed, the reader should be emotionally engaged with the narrator and be not only intellectually informed but elevated by her insights. Rachel Adams succeeds in all these respects, in part by writing with stark honesty:
I never had an amniocentesis.
This is shockingly risky behavior on the part of an ambitious, overeducated, overachieving person like myself. Amnio was made for people like me, women with a deep need for order and control and perfection. Women who strongly believe in the right to abortion. Technology was supposed to liberate the woman who needs to know she will never have to be the mother of a child like Henry.
So what the hell was I thinking?
Down syndrome is the most frequent form of intellectual disability caused by a demonstrable alteration in chromosomes. At birth, these children can be identified by a flat facial profile, slanted palpebral fissures (gaps between the upper and lower eyelids), a crease across the palm, excessive skin at the nape of the neck, low muscle tone, and hyperflexibility of their joints. Not all of these physical characteristics are present in each affected baby. Approximately one half have congenital heart disease, particularly septal defects (“holes” in the heart); others have eye disorders like myopia and strabismus, hearing impairment, and endocrine abnormalities including thyroid dysfunction and diabetes. As they enter the third decade, many with Down syndrome develop changes typical of Alzheimer’s disease. Yet the ultimate impact of Down syndrome for each person can be quite variable—some profoundly debilitated, others relatively healthy and able to live as independent adults. The exact reasons why an extra chromosome produces such different effects remain unclear.
Henry’s birth causes Adams to reexamine her life. She struggles to see meaning in bearing a child with Down syndrome, now not with the objective eye of the academic, but with a sharply subjective perspective:
People were always asking what compelled me to write about freaks. I knew they thought my odd academic interests must be driven by some equally odd quirk in my past…. It might have been the year my best friend Naomi and I found a copy of Leslie Fiedler’s Freaks: Myths and Images of the Secret Self.… We spent hours poring over the pictures of the hermaphrodite with breasts and a penis, fat men and ladies, two-headed babies, and the Elephant Man.
Or maybe it was the summer I discovered, to my horror, that I was growing a mustache and coarse hairs began to sprout from my chin…. I finally met a mother-and-daughter team of electrologists and, after months of costly and painful treatments, the hair was gone. But no matter how smooth my face, I couldn’t shake a lingering sense that somewhere inside of me lurked a bearded lady.
Or maybe I just identified with the freak’s perpetual status as an outsider.
I don’t actually believe any of this. What I really think is much crazier. It requires a willing suspension of traditional ideas about cause and effect. But humor me: I think I wrote that book to prepare me to be Henry’s mother.
Adams’s life has centered on language. “We were a family whose lives revolved around words. The ability to communicate was essential to my career and my sense of self.” As a writer, she states, her ideas were developed by talking about them with other people.
I shared my finished work by giving talks at conferences and universities. I loved giving lectures, answering questions, the give and take of a seminar. I took great satisfaction from knowing I had explained a concept or an idea clearly, realizing I had taught something to my students or changed the way they thought about a problem.
Adams’s sensitivity to language becomes acute when she is repeatedly informed that children with Down syndrome are mentally retarded:
The word “retardation” felt like a slap in the face. I hadn’t known people even used the word “retarded” anymore, except for the teenagers I heard shouting at each other on the subway during the after-school rush. “Dude, that’s so retarded!”
…I bristled at the retard jokes that seemed to crop up like poisoned mushrooms in movies, on TV shows, and in the mouths of politicians. My thrill at seeing Barack Obama elected president was compromised when he laughingly told Jay Leno he bowled like someone in the Special Olympics and when White House chief of staff Rahm Emanuel called a plan to run ads against moderate Democrats “fucking retarded.” I stopped a graduate student in the middle of an oral exam because he described something as “retarded.” I couldn’t do much about the language of politicians or Hollywood comedies, but I could ask a doctoral candidate and future teacher to think carefully about his choice of words.
Adams also experiences insensitivity in the clinical world. While her family pediatrician, Dr. Zimmerman, is “kind and unflappable,” other doctors act with an obtuse disregard for her feelings. A physician on rounds presents Henry as a specimen for purposes of teaching:
One day I was sitting with Henry when the hospital’s pediatric geneticist came in, followed by a group of medical residents. They clustered around the incubator, as he pointed at my son. “This is a three-day-old baby with features suggestive of Down Syndrome,” he told them. “Note the wide-set eyes, the open mouth, the shallow bridge of the nose.” He reached into the incubator to demonstrate the floppiness of Henry’s limbs by lifting them and letting them drop. He pointed out that the last segment of each pinkie finger was slightly crooked. The residents peered at my baby and nodded. Nobody spoke to me, and they moved on.
Later, she discovers that one solicitous physician scheduled regular follow-up appointments not for Henry’s, or her, benefit:
The doctor greeted us as he came into the room, trailed by a younger man and a woman whom he introduced as medical residents.
He asked me to undress Henry and sit with him on my lap. Then he turned his attention to the residents. “Please recite the features.”
They gazed at him uncomfortably. Then they looked at us. There was a long silence. “The eyes,” the man said hesitantly.
“What about the eyes?” the doctor quizzed him.
“The epicanthal folds,” the man replied. “There’s some extra skin and the eyes are slanted upward at the corners.”
“Yes, good. What else?”
“The mouth,” the man offered. “Low muscle tone. And his ears are small.”
“Correct…. You should also note that his hair is thin, the abnormally shallow bridge of the nose, and the protruding belly, which is an effect of hypotonia. Oh, and look at this.” He picked up Henry’s hand. “Look at the tip of his little finger. It’s slightly crooked.”
…It was then that I thought I understood why the doctor kept inviting us back. It wasn’t that he had anything to contribute to Henry’s care. It was because he saw Henry as a curiosity. Back in the days before amniocentesis, geneticists used to see plenty of cases of Down syndrome. But once genetic testing became commonplace, babies with Down syndrome were fewer and farther between…. From a geneticist’s point of view Down syndrome is interesting. It’s far more complicated than a congenital disease like cystic fibrosis, which involves just a single gene mutation.