Book Review: Rising Henry (Rachel Adams)

Reviewed by Anne Kaier

Rachel Adam's thoughtful, intelligent book is subtitled A Memoir of Motherhood, Disability, & Discovery. In many ways, that is precisely what it is. Because it's a memoir, the book focuses on Adams's own feelings and actions during the three years after the birth of her very charming son Henry, who has Down Syndrome. Her husband Jon, stalwart and sensitive, plays a supporting role, as does their older son Noah. Throughout the book, she is influenced by memories of her own mother who died of cancer when Adams was six. But because Adams is the kind of person who, I suspect, writes in order to discover what she thinks, this book reads as the probing of an intelligent woman trying to make sense of her son's disability, trying to give it context and meaning. It also shows how well Henry is loved and educated–in short, raised.

There's a haunting scene in the middle of the book that showcases several of Adams's themes. Rachel has taken Henry for another follow-up appointment with a geneticist. She holds her toddler on her lap while the eminent doctor gathers his residents round. Treating Henry as a medical curiosity, the doctor points out distinguishing features: "'Note that his hair is thin,'" the physician says, "'note the abnormally shallow bridge of the nose, and the protruding belly.'" Then the geneticist picks up Henry's hand to show the crooked tip of his finger. Rachel perches silently on her seat, incredulous. "It was 2009," she writes. We were sitting in the office of a respected hospital in New York City, but this felt too much like a freak show, with Henry and me as the main attraction."

Anyone who has ever been the subject of teaching physician's demonstration can relate to this scene, ruefully, perhaps. But Adams's analogy with a freak show comes from her own professional background. In 2001, she published a serious academic study called Sideshow U.S.A.: Freaks and the American Cultural Imagination. In her memoir, she tells us that the book got her a full time tenured job at Columbia University. And she wrote it before her second son was unexpectedly born with Down Syndrome. Adams is too honest a writer not to see the irony in this. In fact, she delves into it, discussing her own fascination with the rebellious spirit of disabled people who made a living on the side show circuit. I think she tends to romanticize those lives–and certainly when it comes to reflecting on Henry, she modifies her enthusiasm: "The freak's flamboyant outsiderness wasn't so appealing when I started to think about what I wished for my own child," she writes. "I wanted him to have the same opportunities and pleasures as other children." However Adams is not immune to feeling a sense of stigma–especially at the beginning of Henry's life. "I wondered," she writes, "whether my friends and colleagues would recognize the value of a child who was slower, less capable, and more dependent." Slowly–and it is one of the strengths of this book that she is honest here–she works on how to think about disabled people differently. She talks some of the language of disability rights, quoting Rosemarie Garland-Thomson's idea that disability will come to everyone as they age. If we accept that idea, Adams says, "maybe we would learn to really accept, and not simply to tolerate, the presence of people with disabilities among us." Is Adams convinced of this? Has she really accepted disability? Clearly she deeply loves her son. But the parallelism between her academic interests and her second-born is too strange and she is too self-aware, to allow her to make an easy conversion from side-show enthusiast to cheerleading disability mom. I think she's still disturbed at Henry's differences–as much as she loves him and fights for him. It is, perhaps, impolitic to say so, but I also think she may be like other parents of disabled children in her ambivalence. And I think that a book such as hers, in which that ambivalence is hinted at, might console parents who struggle to make sense of the disabilities of the children they love.

It takes some chutzpah to write a memoir as the mother of a disabled child. Critics will line up to tell you how to raise your kid. They will comment on your attitudes toward your child, as I have done. Some readers may also note Adams's financial circumstances. Her husband is a lawyer. She's a tenured professor at Columbia. They live in Manhattan, where they have a choice of therapists who can give Henry the physical, occupational, and speech therapy that help him to thrive. Although Adams whines a bit too much about how much time she has to spend scheduling Henry's appointments, still his treatment is paid for by New York State and, as Adams writes, when Henry was a baby, New York "happened to have one of the best early intervention programs in the country." Wouldn't it be more difficult for parents who live in rural areas or who don't have the kind of flexible work schedule Adams does? Very likely so. Rural parents might have to drive their children further to find good therapists. Single mothers might have to choose between going to work or sitting in on therapy sessions. But the problems here seem to me to be with the environment, not with Adams. Every child with Down Syndrome should have the kind of skillful therapy that helped Henry.

As a memoirist, Adams makes many excellent choices. Her book is elegantly structured, moving forward chronologically during Henry's first three years, but with breaks for flashbacks. Her chapters on her mother's death from cancer when she was six are riveting and relevant to her own choices as a mother. Adams is an intellectual and the book profits from her interest in the history of the treatment of Down Syndrome from the nineteenth century to the present day. She writes a clear prose, totally lacking in the academic jargon which makes some disability studies books absolutely impenetrable.

I do wish she had included more scenes such as the one in the genecist's office or one in the back of a taxi after she and her husband, Jon, had successfully persuaded a tired administrator to approve more education for Henry. "'That was harder than I thought it would be,' Jon said. "but we won. We did something good for our boy.' He put his hand on top of mine." This short scene and small gesture give us a lively sense of this couple's relationship. Scenes such as these–done to masterly perfection in Lucy Grealey's Autobiography of a Face, for example–make a memoir truly memorable.

Adams's is more plodding. However, she's written a telling scene near the end of the book. It's 4:45 in the morning and Henry, a persistent four year old, has woken her up, hoping to watch The Muppets on her iPad. Adams, with the kind of determination mothers of disabled kids often have, tries to get Henry to work on his reading skills before letting him plunge into Big Bird and Elmo. A self-described over achiever, she thinks this is a reasonable thing to do before dawn. She sits him down next to her on the couch and they look at a homemade book of family pictures. Fastening on a shot of Henry in funny glasses, she tries to get him to notice the difference between "I am Henry" and "I love Henry". He keeps reading both sentences as "I love Henry." Rachel tries flash cards with no success. Finally she sighs with irritation. She hasn't even had coffee yet and is ready to give up. "What do I know about literacy?" she asks herself. "My own students arrive ready-made, so precocious and bright." She goes into the kitchen, gets some water, and comes back into the living room:

The apartment is still dark, with the blue light of early morning coming in the windows. I pause in the doorway. Henry has picked up the book and is reading to himself. He points to the cover, "I am Henry," he says as clear as day. He turns the page. "I love Mommy," The next page. "I love Daddy."
      Henry, I shout, "you're reading the book!"

This is the kind of small triumph that often serves as the climax of a book about a child with a disability. In other hands, the scene might have been washed with the pastels of a Hallmark special. But Adams is too smart, too conflicted, and too forthright to shape this scene without confessing her irritation, without reflecting on the bright students she teaches at Columbia or without suggesting her joy that a son of hers can finally do something she finds so precious: reading.

Raising Henry (Yale, 2013) is itself a book to be read and re-read, and pondered over. It's a story which mothers of every kind and readers of good memoirs will find stimulating, revealing, and thoughtful.


Anne Kaier's recent work, in poetry and nonfiction, appears in The Kenyon Review, The Gettysburg Review, Bellingham Review, Alaska Quarterly Review, Paradigm, Sinister Wisdom, Under the Sun, and other venues. Poems and an essay are included in Beauty is a Verb: The New Poetry of Disability. Her poetry chapbook, InFire, was published in 2005. She serves on the Fulbright Screening Committee in Creative Writing. Holding a Ph.D. from Harvard University, she teaches literature and creative writing at Arcadia University and Rosemont College in suburban Philadelphia.