Rachel Adams, Raising Henry: A Memoir of Motherhood, Disability and Discovery (New Haven: Yale University Press, 2013). 272 pp. $17.95.
Raising Henry begins with two images. The first is the photograph of author Rachel Adams and her son Henry on the front of the book. It is, Adams tells us, one of the few photographs of them together, since she is usually the one behind the camera. The second image is one she only describes in the opening paragraphs of the book: a cherished photograph of her mother, already dying of cancer in Rachel’s childhood.
These images combine to ask the reader: what does it mean, not only to focus on the disabled subject, but to expand our view and allow a disabled child’s mother, father or siblings to be “in the picture” too? In fact, if you go back to these paragraphs after reading the whole book, you see how the two images are intertwined. Adams fears that she will die young, as her mother did. This fear gives her a special urgency as she fights for every aspect of Henry’s development that might allow him to go on, at some date that cannot be anticipated, without her.
This memoir of the first few years of Henry’s life, a journey that re-organizes a family of four around Down syndrome, asks us an even deeper question. What does it mean for a mother to be present for her child? While the child who is disabled becomes the focus for care and therapy, the whole family shares the disability to some degree: they are the parent who coordinates care, the parent who doubles down at work to help the family meet the expenses of care, or a toddler sibling whose expectations about everyday life must change. In addition to showing us how her family meets Henry’s needs, Adams shows us how society does not meet the needs of disabled people. Every resource that Henry receives requires patience, negotiation, and skill in navigating bureaucracy. The lengthy descriptions of finding the care and therapies that Henry is entitled to underlines what has become a fact of our affluent society: most if us are in it alone no matter how much education, health insurance or money we have. Any care that a family member requires — whether it is for a disability, an illness, aging or merely coordinating childcare and education for a two-worker household — still means that each family making it up as it goes along.
Adams has an intellectual advantage: she isn’t making all of it up because she is a professor of English at Columbia University, with a specialization in, among other things, disability studies. The author of Sideshow U.S.A.: Freaks and the American Cultural Imagination (University of Chicago Press, 2001), she has written extensively about the marketing, interpretation, agency and display of bodies that elude so-called categories of “normality.” And yet, knowing is not doing. Displacing what she already knows about raising a neurotypical baby, Adams has to throw out the rulebook on feeding, sleeping, moving and every form of child development you can think of. Henry is not incapable, but he is delayed, often significantly: his muscles must be taught through repetition and practice to do all the things that count as “development” for a child’s first few years.
Although this has, mysteriously from my point of view, become a criticism of Adams’ memoir in some quarters, she has other advantages: a flexible academic schedule, enough money to hire people to help, and the education to find out about and acquire every resource that Henry needs. Importantly, Adams and her husband find an early childhood education center that is willing to mainstream Henry, giving him the opportunity to develop social and physical skills that an environment geared to Down syndrome children might approach differently.
As we follow Adams and her husband into this journey of what it means — not to raise a Down syndrome child, but Henry in particular — another question raises its head: how difficult it is to know what babies are thinking. And yet, we mostly believe that we know what babies are thinking and doing precisely because we are all schooled to what is “normal” baby and child behavior. Do we not project our desires on babies and read successful projection as communication or intimacy when we really have no way of knowing what a child is thinking? Henry defies this logic. Adams becomes hyperaware of her son’s opaqueness from birth because he cannot do by himself the other things that her first child could do. For example, all children must learn to nurse, but Henry’s weak facial muscles make feeding him a particularly difficult chore, one requiring patience and persistence from both him and those nursing him.
Every stage of Henry’s development will require a strategy and a therapy. As Adams plunges into a regime of consultation with experts (some of whom give her partial, wrong or conflicting information), she highlights the uncertainty of all parenting, and the unknown futures of all children that become understood as obstacles when a child is developmentally delayed. Adams alerts all parents of children who are not neurotypical that they will be told things that are designed to limit their expectations for a child, and that they will consult with experts with divergent ideological perspectives that dictate different approaches to the disability. In other words, they will have to make choices as all parents do. She warns us, for example, that if you are doing something that works, and someone else tells you it is wrong, you might want to do it anyway.
Adams also alerts us to the seductions of the normal, or the attempts to achieve a near-normal, that parents must navigate with disabled children: parents must constantly make decisions about when to challenge a child and when seeking a challenge is delusional or wrong. Here, readers might reflect on the highly developed ideological divides in the deaf community about communication strategies: whether to give a child a cochlear implant or not; whether to sign, lip read or speak (or all three); and whether deaf children should be raised entirely within deaf culture are but a few of these. My guess is that the Down syndrome community is also well advanced in these conversations, but Adams’ book is a terrific primer for those who have spent little time thinking about the condition at all.
Me, for example. Among the things I learned are that it is “Down” syndrome, not “Down’s;” that Down syndrome children were called Mongoloid (actually, as recently as my own teenage years) because they were thought by eugenicists to be an example of more “primitive,” non-white human life; and that, like neurotypical people, they have a significant range of physical, intellectual and verbal capabilities. Down syndrome children, in short, grow up to be adults who do a great many things and live independently from their parents and siblings.
I also learned the disturbing information (or at last it was disturbing to me) that some professionals encourage parents to have normalizing facial surgeries done on their Down syndrome children. There are many arguments against these elective surgeries, one of which is that a Down syndrome child or adult might be harmed if there was not a physical cue for police or other authorities. Another, however, shows us how disability studies — which contains so many different ways of understanding humanness — coheres around certain ideological issues of body and mind: for example, the obsession with “looking normal” produces many interventions on physically atypical children, among them damaging and gender-crossing surgeries on intersexed babies.
I read this book as an invitation, and spent my time scribbling down issues and question that intersected with other interests I have in the field of gender, queer and disability studies. However, it’s hard to separate a review of Raising Henry from some of the negative responses it has drawn.
In a review published here at the Chronicle of Higher Education, journalist Cristina Nehring argued that readers “learn less about raising a child with Down syndrome than about the privileged lives of some New York City professors.” (This is a woman who, in a review of his recent book, Far From the Tree, dismissed Andrew Solomon as “arty,” “gay,”and a coward, devoting nearly all the allotted space to discussing her own daughter.) Accusing Adams of turning her son into “another academic project,” she is highly critical of Adams and her husband, a well-paid attorney, “subcontracting” Henry’s 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.” You can read the full review here. In The New York Times, Susannah Meadows also complains, but more nicely, that there is not enough about Henry in the book, and that it is too academic.
Both these reviewers miss an important point, in my view. The book is more about learning to be a different kind of mother than it is about explaining a child’s differences. Furthermore, Adams respects Henry’s integrity as a separate person who might want to represent himself someday. Despite the fact that I am only a dabbler in disability studies, and only partly understand its ideological and intellectual divides, I will say unequivocally: I love Raising Henry and think it is a great introduction to Down syndrome children. Nehring’s review actually shocked me with its meanness, and its failure to represent the book accurately: Adams does not “outsource” Henry’s care, for example. She hires people to help, and it means that she can keep her job. That really doesn’t seem so terrible to me. If I didn’t know better, I would actually think that Nehring and I had read entirely different books. Differently, Meadows is far too obsessed with why Adams did not have the amniocentesis that would have alerted her to the fact that she was carrying a Down syndrome baby. Why? So she could have an abortion, when Adams has so clearly stated throughout the memoir how much she loves her son? I am pro-choice to the core, but suggesting that Adams kind of dropped the ball on terminating the pregnancy seemed harsh and beside the point to me.
Perhaps what determines your read on the book depends on what role disability has played in your life already, and how open you are to learning new things about it. Where Nehring saw Adams as an uncontrollable narcissist, I saw a professional woman whose life was turned upside down by a life-changing event, a woman who then pulled together every resource she had to be the best mother she could be. Where Nehring saw a woman singing the bourgeois blues, I saw, in vivid detail, how even those of us who have good educations and significant financial resources become unpaid and untrained case managers for family members at the drop of a hat. Where Nehring saw a tenured professor lost in her own privilege, I saw a woman not hiding any advantage she had — and showing that her resources only mitigated the challenges she faced in getting basic services for her child than the parents of neurotypical children take for granted.
In fact, it was Adams’ constant reiteration of how inadequate to the situation she felt despite her educational and financial advantages, that made such a huge impression on me. Had she not used this narrative strategy, I can’t imagine how many critics would have accused her of being fraudulent or lacking in self-awareness. I took her self-presentation as I think it was intended: if the health, therapy and schooling of a Down syndrome child is this difficult for a college professor and a lawyer to manage, imagine how few services must be trickling down to people who don’t have these advantages? How many working families must cross the line into poverty because one parent has to drop out of the workforce to give a disabled child a fighting chance? How many Down syndrome children are left with very basic or no development because they have been written off by so-called experts?
A scholar of disability studies, and thus an expert herself, Adams has to retrain and become another kind of expert. Part of what that means is extending herself to become part of a heterogeneous community organized around a caregiving. She writes about feeling like a “chronic outsider” in Down syndrome groups, “constantly reminded of how little I had in common with these other parents” since the requirements of raising a disabled child impact families so differently. Perhaps it seems callous to include “vegan” with “poor” in the list of differences that are navigated in such groups. However, when you put this pairing in context with one of the great hazards Down syndrome children face, severe allergy to gluten, it’s easy to see why a poor family and a vegan family might have something in common after all. Working parents of all classes need to be able to eat out, to get take-out food to eat at home, and to be able to put meals together on the fly. A gluten allergy throws a wrench into the most basic family activity there is, eating. Admitting that she had her husband have found one or two restaurants that are safe for family dinners could make a reader dismiss her as privileged. Alternatively, it could raise the alert for all of us: what if your eating out budget is organized around pizza, McDonald’s, or the Chinese take-out?
Finally, I thought it was a good thing that Adams only spoke for herself, that she did not speak on behalf of other parents or claim to be able to intuit Henry’s perspective. The current state of play where people write about their own pre-verbal children, in formally published books and informally published text on social media, and without the child’s permission, is an ethically fraught zone, in my opinion. It’s particularly fraught because people do it out of the best intentions: love and pride are primary, as is the need to connect that social media seems to encourage. But it can go terribly awry, in ordinary and extraordinary ways. Several years ago a blogger wrote a series of posts about being gradually ground down by her emotionally disabled, and sometimes violent, child, culminating in a post in which she threatened the child with institutionalization. And then did it. A flame war erupted among mommy bloggers and disability rights scholars that both condemned the mother for her actions, and also for writing about it for an undifferentiated public audience. If Adams’ account of Henry is somewhat opaque, I think she made the right decision: because he has Down syndrome, does not mean that it isn’t his story to tell.
I can wait. If we are patient, maybe Henry will write his own memoir.