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.
Although the year is 2009, Adams observes that the setting could have been a nineteenth-century freak show.
A close friend whose child has a neurodevelopmental disorder once told me, “This life is not for the weak-kneed.” After Henry’s birth, Adams’s sleep is disturbed by dreams of “squat, stubby-limbed creatures who grunted and drooled their way through my mind.” She threw herself into organizing Henry’s care. “The busier I was, the less time I had to think about what had become of my plan to have the perfect family.” But she faces frustration after frustration. Getting Henry to nurse from a bottle requires him coordinating tongue, cheeks, and throat. Adams is told at the hospital that it is too daunting a task, so she is instructed to feed him by passing a tube down his nose into his stomach. Henry resists “with rage.” The struggle to insert the tube becomes intolerable for all. Yet with help from a Trinidadian baby nurse, Henry ultimately nurses from a bottle. It is a lesson for Adams that there is not just one way to care for Henry.
The current approach to children with neurodevelopmental disorders is termed “early intervention.” The sooner they are taught to be coordinated in movement and acquire comprehensible speech, the greater the chance these skills will enlarge and afford an independent life. To this end, parents of children with disabilities encounter cadres of physical therapists, occupational therapists, and speech therapists. They are faced with decisions about which method their child should follow to try to advance. But even an intelligent, motivated, and determined parent like Adams can be stymied:
Once the two therapists got to work, disagreements started to emerge. For experts in communication, they seemed surprisingly reluctant to communicate with each other, leaving me to observe and do my best to report to each therapist what the other was doing.
Ultimately, Adams chooses the approach that seemed to her to fit Henry.
Adams, the historian describing those who are radically different, is no longer an observer. As Henry’s mother, she has stepped into their world. This crossing causes her to reflect on her earlier assessment of what is “interesting.”
I was much more interested in the people who refused to be mainstreamed, continuing the tradition of the freak show by flaunting their differences for everyone to see…. I wrote enthusiastically about Jennifer Miller, a woman with a beard who is also an acrobat, juggler, and lesbian performance artist. And Coco the Killer Clown, a dwarf who covered his face with crudely applied grease paint, cracked jokes that nobody could understand, and made balloon shapes that looked nothing like animals. I was thrilled to find a little person who exhibited herself as “the World’s Smallest Woman” in a trailer behind the Coney Island boardwalk. In high school I’d had a crush on a guy who wore a black T-shirt printed with the slogan “Why Be Normal?” I thought it was a great question.
I’ve always believed that the full integration of people with disabilities challenges our ideas about what counts as normal. As we confront the great variety of human embodiment and ability, we see that the world is a richer and more interesting place. But what I wanted most for my own son was for him to be as ordinary as possible.
Adams does not come from a religious background, but her husband has deep Christian roots in Georgia. She anxiously anticipates a family gathering:
In my in-laws’ world, I was pretty sure there were still people who understood disabilities as signs from God. Sometimes they were seen as signals of a person’s special forbearance or goodness. And sometimes they were lessons in some charitable virtue like patience, acceptance, or humility. I had read plenty of websites, blogs, and memoirs whose authors claimed people with Down syndrome were angels, or that God had singled out their families for the special mission of raising a child with a disability. I could accept that there are many different ways to make sense of disability, but this one seemed both grandiose and misguided…. I didn’t know what I would do if someone spoke to me about Henry in that way.
But to her surprise, “I realized that at least an hour had gone by and nobody had mentioned God or angels or Jesus. Nobody had described Henry as a gift or a blessing. In fact, nobody seemed to regard him as anything other than the baby that he was.” She is relieved that Henry is not seen as “interesting.”
This August, Dr. Jeanne Lawrence and fellow researchers at the University of Massachusetts published an article in Nature on a molecular method to turn off the extra chromosome in Down syndrome.* This feat is still a laboratory experiment, but was heralded as a strategy that one day might be a cure. Lawrence published her work on genetic inactivation after Raising Henry was written, but Adams ponders what she would do if medical science could ameliorate the consequences of the extra chromosome:
The very idea of a drug to treat the effects of Down syndrome goes against the core beliefs of many scholars and activists of disability. Scientific research is premised on trying to correct the deficiencies and limitations of people with Down syndrome…. While the scientists don’t quite describe Down syndrome as a disease, their work is always framed in terms of correction, improvement, or compensation. By contrast, disability studies emphasizes the social environment, rather than flaws or inadequacies in the individual.
As Henry grows, Adams notes:
He is certainly more successful in environments that accommodate many different ways of learning and behaving, but there is no environmental change that can erase his disability, which also has to do with differences of mind and body. That said, if Henry were offered a drug that could help him to better learn and adapt, would I take it? There is no easy answer to this question. I’ll do anything possible to make sure Henry gets to lead a full and satisfying life. At the same time, I know drugs that affect brain function often have side effects that may be worse than the original symptoms they are designed to treat. If a drug to improve cognition made Henry stop being Henry in some fundamental way, then the answer is no.
Dr. Zimmerman, the conscientious pediatrician, closely monitors Henry. He finds that he has celiac disease, an intestinal disorder marked by sensitivity to gluten. Adams prepares a gluten-free cake to celebrate Henry’s third birthday with a gathering of children. It is a disaster. Without the gluten, the flour “compressed into a compact mass.” The added syrup turned the dessert into “a sodden sponge with jam spread stickily between the layers. Extra liquid oozed out the bottom. No wonder it had felt like I was carrying an oversized block of cement.” After taking a bite, some children left the rest on their plates, others spit it out.
My heart sank. Was this cake another metaphor?… I couldn’t help but see it as a rejection of me or, even worse, of Henry…. I was near tears as I imagined dumping the damp, jammy mess into the garbage….
I nodded distractedly, watching the party organizers clear the plates of uneaten cake from the table.
“More cake,” Henry said…clear as a bell.
Suddenly I realized what he was saying. He liked my cake. And he wanted another piece. But more important, he was asking for it. He was speaking, making a clear request. And I could understand him and give him what he needed. These were the building blocks of future conversations where we would ask questions of each other, give answers, maybe argue or debate. What mattered was that he was talking in words, and I knew what he was saying. This was the foundation of language shared not just between us, but with the rest of the world.
Adams asserts that she and her husband didn’t care if Henry became a talented athlete, or if he could play classical guitar. What most concerned them was what Henry’s future would be like if he had no voice. At the age of three, “my son had found his voice.”
We learn from Adams what it means to have a son very different from most others in mind and body, whose future is uncertain, but whose life is infused with love and so worth living.
* Jun Jiang et al., “Translating Dosage Compensation to Trisomy 21,” Nature, August 15, 2013. ↩
Jun Jiang et al., “Translating Dosage Compensation to Trisomy 21,” Nature, August 15, 2013. ↩