What Pearl S. Buck’s Memoir Can Teach Parents of Disabled Children

When my daughter was a year old, my mother handed me a worn-out copy of Pearl S. Buck’s The Child Who Never Grew (1950). The act of giving me this book felt significant, like an inheritance that she passed on to me. She, as the mother of a child with disabilities, passed it on to me, another mother of a child with disabilities. My mother’s first child, my brother, was born in the 1970s with what we would only learn 50 years later was a microdeletion syndrome.

My daughter, through the strange pathways of DNA and inheritance, was born with congenital deafness and, a year later, diagnosed with diabetes. The two genetic inheritances had nothing to do with each other and were radically different in kind, but they set my mother and me on a similar path navigating the emotionally complex and bureaucratically complicated life of a parent of a child with disabilities. My mom felt sheepish about giving Buck’s memoir to me. She wasn’t sure what I would think of it, but she wanted me to have it.

Buck’s popularity was already on the wane when my mom received the book in the 1970s and has never really recovered. From the 1930s through 1950s, Buck was one of the most important American women writers of her time. Her novel The Good Earth (1931), about the hardscrabble lives of Chinese peasants, was drawn from nearly forty years of living as an American in China.

The Good Earth won a Pulitzer Prize and its success led Buck to become the first American woman to win a Nobel Prize for Literature in 1938. Buck went on to write over seventy books which, though consistently popular with readers of her day, have fallen from favor. She was criticized on the grounds of her identity—as a white woman writing about China—and also on literary merit. She suffered the posthumous fate of many women writers who get too popular; she was not seen as serious enough for a later generation of critics.

Her memoir about raising a child with intellectual disabilities, The Child Who Never Grew, was one of her few books that continued to be read by a small but devoted group of readers long after Buck’s heyday. Even as it has been supplanted by other, more up-to-date memoirs and accounts of motherhood and disability, Buck’s book stands as one of the first examples of a prominent woman speaking publicly about her experience mothering an intellectually disabled child.

The book begins, “I have been a long time making up my mind to write this story. It is a true one, and that makes it hard to tell.” From here, she describes the slow realization that her daughter was different from other children her age. As a white American raising a child in 1920s China, she was used to standing out.

But there were other ways that her daughter was different from the children around her. She was slow to talk and to walk and when she did start walking, ran around with a restless energy that Buck describes as “merely motion.” After meeting with a visiting American doctor, she added other symptoms to the list: a short attention span and an unfocused gaze. But she also had special gifts that Buck was quick to tell the long list of specialists they saw. She was especially gifted at music. The doctors diagnosed her with the hazy medical language of the time—mental retardation.

When my brother Alex was born in 1970, his diagnosis was likewise hazy. The genome was not yet coded and only later, when he was in his fifties, would genetic tests attribute a string of letters and numbers to him—IP36 deletion syndrome. But before the genome, the language to describe intellectual disabilities was unformed and often pejorative. Even now, this genetic explanation does not define him; it does not reveal anything about his love for Neil Diamond songs or vacuum cleaning or reruns of old game shows. It doesn’t explain his deep attachment to a small group of people who have touched his life.

Buck’s book stands out for its emotional forthrightness. The other narratives out there by the 1970s tended to be treacly sweet and not to my mom’s liking at all. Pamphlets and mothers’ groups tended to push a narrative of self-sacrifice. My mom was not the sacrificial type and the stories of loss and grief and sadness didn’t speak to her. Buck’s book wasn’t perfect either, but it at least felt honest to my mom. Buck was determined to find a better life for her daughter and she was equally determined to make a life for herself.

The solution Buck found was to place her daughter at the Vineland Training School in New Jersey. The Child Who Never Grew describes Buck’s painstaking search for a home for her daughter. The American doctors that she consulted told her that her daughter would never have a “normal life” and that the best thing she could do was to put her in an institution. Her Chinese friends disagreed, believing that a child was best kept with her family.

But Buck deferred to Western medicine, moving back to the US and beginning the search for an institution. Vineland, where her daughter was to live the rest of her life, was preferable to the state-run facilities that Buck toured, one of which she described as an “adobe of horror” where children and adults wore calico sacks instead of clothes and fed and slept on a floor covered in excrement, which was hosed down two or three times a day.

Instead, at Vineland, her daughter lived in a quaint cottage, listening to her beloved record collection, and was visited by her mother every week. Buck dedicated all the profits from The Child Who Never Grew to Vineland, which she saw as offering a hopeful future for children with disabilities. And yet, Buck also describes her daughter asking to go home every single time that Buck visited. It was a nice enough place, but it was never home.

Putting her child in an institution allowed Buck to become a professional writer. She wrote her early novels in China with her daughter at home, but felt a deep antagonism between the demands of her writing and the demands of her child. Carl Zimmer describes how her daughter “became intensely jealous” whenever Buck sat down to write: “She threw porridge at her mother and used handfuls of potting soil to clog the keys of Pearl’s typewriter.” The Child Who Never Grew is a rare, intimate look at the emotions and decisions that a mother faces in the wake of a disability diagnosis in the early twentieth-century, but it is also a long justification for prioritizing her life as a writer.

When I sat down to write my own memoir, Buck’s book ran through my head as an enticement and a warning. Reconciling a writing life with the life of a mother has always felt like an impossible task. Adrienne Rich described how any time she sat down to write her children would sense her attention shift and would interrupt. She writes, “I would feel the futility of any attempt to salvage myself, and also the inequality between us: my needs always balanced against those of a child, and always losing.”

If this balancing of competing needs is difficult for any writer-mother, it is doubly difficult for a parent of a child with disabilities whose needs may be more persistent or more complex. Rich managed to weather the years of early childhood and continue her work as a poet, but in order to become a professional writer, Buck placed her daughter in an institution. She was not the first writer to institutionalize a disabled child. Arthur Miller sent his son with Down Syndrome to an institution and, unlike Buck, never wrote about him or described his experience as a parent. His son’s existence was unutterable for Miller.

Not so for Buck, who chose—bravely for her time—to put her experience into words. Buck’s writing was important for a generation of mothers like mine who were struggling to find their experiences reflected in the world around them, but Buck also exposes all kinds of traps that we still find in first-person writing about parenting and disability; self-pity, regret, and guilt, most of all.

The Child Who Never Grew is a book written for parents and includes long passages exploring the sadness and disappointment Buck felt after her daughter’s diagnosis. This can, in its way, be a tonic compared to some of the forced cheer that seems to be a requirement in parent narratives today, especially on social media, but it also has the effect of turning the book into a slog through what Buck calls “inescapable sorrow.” We are all of us products of our time and parents of children with disabilities might feel this more perniciously than others. The choices that are presented to us may, in hindsight, prove to be the wrong choices. The vocabulary that we use today may be the stuff of censure in the future.

There are many reasons not to write about disability from a parent’s perspective. Disability advocacy groups have rightly pointed out that parents have dominated the discourse since the time my brother was born. In the wake of the deinstitutionalization movement of the 1960s, parents emerged as a powerful voice for change, but this change was frequently parent-centric and ableist.

Advocacy groups like Autism Speaks have been especially criticized for speaking for children and, in so doing, dominating discussions and advocacy with parent needs and fears and expectations. There are also the more general ethics of a child’s right to privacy. Is it ever ok to write about a child, especially one who is not old enough or able to speak for themselves? These concerns are very real and not to be discounted, especially in a digital age where privacy is so rarely assured.

And yet, when I look at the longer history of disability and parenting, I see privacy so often associated with shame. To keep a child’s life private or one’s own joys and struggles as a parent in the shade was, in other times and places, to hide away from the public gaze. When “Ugly Laws” from the nineteenth through twentieth century made being visibly disabled in public a criminal act, privacy took on a nastier connotation.

Moreover, today, when so much social support in the US has been stripped away, parents—and mothers in particular—have been left carrying the weight. Our family-based model of providing for disability care is often, in practice, dependent on women as care providers. In a moment where parents (especially mothers) are making more and more consequential decisions relating to disabled lives—as early as prenatal testing and the decision to carry a child with a disability to term—parent narratives can have a huge impact on the future of disability rights and policies. As Rayna Rapp and Faye Ginsburg write, “public storytelling,” including parent narratives, are necessary to expand “the social fund of knowledge about disability.”

Buck never had a specific diagnosis for her daughter and refers to her as “feeble minded” in the text, but later researchers have determined that she had phenylketonuria (PKU), a rare recessive genetic disorder, which is today diagnosed through infant screenings and treated through a diet that restricts phenylalanine, which can be found in proteins as well as sweeteners like aspartame. Intellectual disability is no longer an inevitable condition of PKU. This makes The Child Who Never Grew a time capsule in multiple respects—it tells the story of a diagnosis whose prognoses and effects are very different today than they were eighty years ago. This may be the fate of any disability memoir as the social, medical, and cultural meanings of disabilities change over time.

Buck tried to preserve some privacy for her daughter even as wrote about her. Buck never uses her daughter’s name in the book. She calls her “my daughter” throughout, emphasizing the possessive note but, also, keeping something back from the public eye. When I decided to write my book, I also tried to toe an impossible line between privacy and publicity, calling my daughter by a pet name, Willie, instead of her birth name. Willie is, in many respects, my invention. She is a name that I give to my experience of parenting, while holding my daughter’s own name back, keeping it off the pages of my book even as every line is full of her and what being her mother has meant to me.

The Child Who Never Grew taught me that, like parenting itself, there is no way to avoid making mistakes when writing about parenting and disability. Like Buck, I wrote because I felt that the stigma of privacy and shame was worse than the risk of saying the wrong thing. I did it because I did not want to sacrifice my writing self entirely to my mothering self. And I did it not to speak on behalf of people with disabilities, but rather, to connect to other parents who might be navigating similar challenges (social and cultural challenges, most of all) and looking for a voice like I had in my mother and my mother had in Buck. Not a perfect voice, but one that can serve as a starting point for naming one’s own experience.

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I Cannot Control Everything Forever: A Memoir of Motherhood, Science, and Art by Emily C. Bloom is available from St. Martin’s Press, an imprint of Macmillan, Inc.