Up from Down
Review of Raising Henry: A Memoir of Motherhood, Disability, & Discovery
Posted September 17, 2013
Review of Raising Henry: A Memoir of Motherhood, Disability, & Discovery. By Rachel Adams. Yale University Press. 272 pp. $26.
Soon after she gave birth to a baby with Down Syndrome, Columbia University Professor Rachel Adams, the author of Sideshow USA: Freaks and the American Cultural Imagination, and the director of the Future of Disability Studies Project, wondered whether, somehow, she had imprinted her obsession with deviance onto her son. During the first weeks of Henry’s life, she dreamed about “squat stubby-limbed creatures who grunted and drooled” and was haunted by fears about what he “would become, or fail to become.”
Adams learned that Trisomy 21 (Down Syndrome) is a genetic accident that can happen to anyone and that, contrary to conventional wisdom, it is impossible to predict what challenges a given individual will face, or what shape his or her abilities and temperament will take. She decided to write Raising Henry, an informative and moving account of their first three years together, to claim these experiences as her own, and communicate with “and even talk back to” parents, doctors, researchers, and therapists, many of whom retain “outdated and incorrect information about Down Syndrome.”
The book makes clear that children with Down Syndrome have benefited significantly from the Americans With Disabilities Act, the Education For All Handicapped Children Act, and the Individuals With Disabilities Education Act. This legislation mandates that from birth to age three, children with disabilities are entitled to have a professional design and help implement an Individualized Family Service Plan. After this early intervention, states were required to provide public education “in the least restrictive environment.” And the ADA guaranteed disabled persons the right to access to public spaces, transportation, and work stations.
Although the support is essential, it sometimes adds to the complex task of managing the schedule of a disabled child. Unlike early intervention, where parents are provided with a coordinator, they are on their own, Adams indicates, when they move into the Committee on Preschool Special Education. Getting a child into an open slot while leaving enough time for transportation to the next therapist’s studio, she writes, “was like trying to solve a Rubik’s cube.” And Rachel, it is worth noting, had more time and money at her disposal than most moms.
Even more troubling is the dilemma of making a decision about treatment when therapists disagree with one another. One of Henry’s therapists, for example, recommended sign language, an approach another therapist adamantly opposed. A third expert wanted Henry to use TechSpeak, an electronic device with a keyboard with picture buttons programmed with recorded words. Adams was also unsure how to weigh the pluses and minuses of placing Henry in an environment designed for kids like him or a classroom with disabled and typical students.
These challenges would be daunting for anyone. Rachel acknowledges that they exacerbated her struggle with her own demons. Her mother died of lung cancer when Rachel was four, leaving her prone to a fear of abandonment. Rachel’s husband, a lawyer, called her “the elephant of wrongs,” who did not forget slights and disagreements, was quick to feel angry and betrayed, and often wore a T-shirt with Eeyore printed on the front. Although her love for, and fierce dedication to, Henry never wavered, Rachel is remarkably candid about the occasions on which she saw a half-empty glass.
In fact, her candor about her family’s story makes Raising Henry especially powerful, poignant, and persuasive. She captures the moment in which she and John, after agonizing about whether to do it, tell Noah Adams that his little brother has Down Syndrome. Confronted with Henry’s difficulties learning to speak, she compares herself to mothers and fathers “whose biggest worry was that their kids didn’t want to nap or eat green vegetables” – and finds it “hard to imagine any common ground between my situations and theirs.” People with disabilities, Adams emphasizes, were “tired of being spoken for by others, no matter how well-intentioned.” Freak shows declined, she reminds us, when people recognized that it was not right to turn someone whose body is different into a “voiceless object.” And she helps us understand the special significance of the rallying cry of the Disability Rights Fund: “Hear our voices.”
She ends Raising Henry with her four year old son looking at a picture book, unable, it appears, to distinguish between “am” and “love,” and then staring out the window. Adams holds up flash cards, gets irritated when he does not respond, goes to the kitchen for a glass of water, and returns to watch him reading, “I am Henry,” then turning the page, and reading again, “I love Mommy.” She covers him with kisses, “mussing the fuzz of his short hair.”
Rachel – being Rachel – understands that “I am Henry” is not quite “Call me Ishmael.” She knows that “we have a long way to go.” But, then again, “we all have to start somewhere.”