The Chronicle Review

Disregarding Henry

Heather Forbes

Rachel Adams with her son Henry, who has Down syndrome.
November 04, 2013

In 2007, the Columbia professor Rachel Adams gave birth to a child with Down syndrome. The day she walked into the delivery room, she was, by her own account, an "overachieving" academic with an "elephant's" memory for slights and an "Eeyore"-like penchant for pessimism. She had a lifelong obsession with the possibility she might die, like her mother, of lung cancer, a potent drive to micromanage, and the unquestioning intellectual competitiveness to come out on top. Five years later, to riff off the subtitle of her new book—Raising Henry: A Memoir of Motherhood, Disability, and Discovery (Yale University Press)—the only "discovery" is that she is exactly the same. We learn less about raising a child with Down syndrome than about the privileged lives of some New York City professors.

Raising Henry: A Memoir of Motherhood, Disability, and Discovery

By Rachel Adams (Yale University Press)

Adams's memoir explicitly inscribes itself in the tradition of personal histories by leading professors who unexpectedly find themselves with an intellectually disabled child on their hands. Even her title recalls a 1999 classic of the genre, Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic, by Harvard graduate-turned-best-selling-author Martha Beck, whose son has Down syndrome. The Pennsylvania State University literature professor Michael Bérubé, parent to another child with Down syndrome and author of Life as We Know It: a Father, a Family, and an Exceptional Child (1996) shows up all over this book. Adams cites abundantly from Bérubé's lectures and her lengthy email exchanges with him. Bérubé blurbs the book, calling it "gorgeously written, beautifully realized." Neither is true.

By happenstance, Adams, a professor of English and American studies, wrote her Ph.D. thesis about views of the disabled and marginalized; it was published in 2001 as Sideshow USA: Freaks and the American Cultural Imagination (University of Chicago Press). Unfortunately, she seems to understand her own child as another academic project. She quickly subcontracts his care to a battery of experts—from the live-in nurse she and her lawyer husband hire to bottle-feed him in their Upper West Side home to the seemingly endless stream of consultants, therapists, nannies, day-care workers, literacy specialists, IQ testers, alternative-communication evaluators, and even a "pricey child photographer," who file through these pages and whose conversations are minutely reported. Humdrum as they often are, they come at the expense of exchanges with her son himself.

Indeed, Henry remains alarmingly abstract, making only a few cameo appearances before his mother turns back to the slights she fears to suffer at the hands of acquaintances, specialists, and fellow parents because of her status as parent of a handicapped baby.

In fact, the slights are slow in coming. Again and again, Adams is surprised that people largely regard her strapping little boy as good news; nearly every time someone speaks glowingly of him, she turns it into an occasion for self-pity: "It was the first time anyone had suggested that there was something good about the birth of our baby." The reader need only flip back a few pages to find similar reactions. The only doomsayer in the room is Adams herself.

This is particularly ironic since she actually has an unusually easy run of it. The only obvious illness Adams mentions Henry being diagnosed with is a runny nose. His largest educational problem is taking slightly longer to talk. Many children with Down syndrome have heavy medical and pedagogic problems: My own daughter contracted infant blood cancer. The two of us spent most of a year in hospital isolation as she had chemotherapy, blood transfusions, IV antibiotics, and morphine drips. Adams seems affronted when her doctors so much as evoke medical risks.

Adams might be an expert in disability studies, but she has little sympathy for the notion that everyone cannot (and should not) be graded with the same report card. She remains obsessed with conventional achievement. Some kids may never be ballet dancers; some may never walk; some may never talk. So what? My boisterous "Dice," as I call her, rarely stops smiling, but at age 5, she has no words yet. She is beloved at the public school she attends, and her speech therapists expect her to talk soon. But even if she does not—as some with DS never do—it'll be OK. She communicates exuberantly with her hands, legs, and theatrical facial expressions. A gay friend of mine put it succinctly: "Spoken language is like being straight. It makes life simpler—but it's hardly indispensable."

While Raising Henry provides a smattering of historical information about Down syndrome, it's mainly a diary of Adams's uneventful life. Her own obsessions are foregrounded; Henry remains almost a stranger. The only sense we glean of what he even looks like is from the jacket photo—and also there, Adams hints, Henry is not the point—she is.

"This is my favorite picture of Henry and me," she writes. "It was taken by Heather, the pricey child photographer. ... It's an expensive habit, and I always promise that each time will be our last. Then spring comes around and ... nobody has taken a single picture of me. ... I wonder how I'll be remembered if there aren't any pictures."

The egocentrism and hollowness only grow as the book proceeds. Adams's concern is with her own image, her own tiny inconveniences. One dramatic point comes when her son's therapists perturb her "extended solitude" at home, obliging her to change out of her pajamas.

Her strongest outpouring of emotion occurs at a top-rated restaurant. She had "wanted to get in before the restaurant was reviewed in The New York Times and became impossibly crowded," she explains. "The space was pleasant and inviting," but soon enough, the terrible truth comes out: The lamb dish she orders is bland.

Adams is incensed. By the time the restaurant host comes by, she's livid: "'Look at this,' I said, gesturing at the plate. ... 'Everything is pale. The meat is beige, and so are the chickpeas, and so is the sauce. There are no colors here, no texture. And it tastes boring.'"

She leaps to sweeping moral condemnation: "This meal does not honor the lamb. I want to do justice to the meat I'm eating," she tells the shaken host.

Thinking back on what caused her outbreak, Adams hits on the explanation: "Maybe I was the lamb? It had been raised for meat ... " but "it didn't have to come to such a sad end. Maybe I saw myself in that lamb. ... In speaking up, I thought I might have done something ... to register my wish that its death had led to something richer and more memorable. ... That tepid, boring dish brought me to a level of insight."

Such is the narcissistic wisdom of this book: Adams is a sacrificial lamb! Not her child, who might face obstacles down the line, but Adams herself, the woman in the starred restaurant, the woman in the pajamas.

Adams is a master of ressentiment and a monarch of malaise. On the occasions she tries to move away from her private case and adduce more global observations, she's no better: We project "our fears onto the disabled body, as if only people with disabilities endure pain. ... Able-bodied people suffer too. It's impossible to live without experiencing pain." Thanks, Professor.

If there was anything Adams could learn from having a child with Down syndrome, she hasn't learned it yet. Sometimes it's the "able bodied" who are the slowest learners of us all.

Cristina Nehring is the author of Journey to the Edge of the Light: A Story of Love, Leukemia and Transformation (Kindle, 2011), and A Vindication of Love: Reclaiming Romance for the Twenty-First Century (Harper, 2009).