The story has been told before. A happy, successful, ambitious mother gives birth to a child with Down syndrome. She loves her baby, but she also struggles to imagine a new life with this unexpected child. In time, she comes to understand that her new life, though different, is just as valuable and happy as the one she had first envisioned. And she learns to celebrate this new life and the ideas, emotions, and dreams her child has given her.
Columbia University Professor Rachel Adams's new book, Raising Henry: A Memoir of Motherhood, Disability, and Discovery, tells this same story. And Adams's story, familiar as its shape will be to anyone who frequents memoirs, bears telling. As she explains, "We live in a world where a baby like Henry demands a story."
Henry demands a story because so many babies with Down syndrome are aborted, and the world looks for an explanation of "what went wrong" if babies with Down syndrome are born. And yet individuals with Down syndrome not only demand a story but also deserve a story. In telling the story of her family, Adams opens up the possibility of joy and goodness and wholeness for families—even liberal Manhattan families like hers— with children with Down syndrome.
Not a Medical Mistake
Part of Adams's story is her decision not to pursue amniocentesis during her pregnancy. Most ob-gyns in Manhattan strongly encourage amniocentesis, and Adams did do some prenatal screening tests that indicated a low likelihood her son would have Down syndrome. In part due to a nerve-racking amnio with her first child, and in part due to these screening results, she decided against an amnio with Henry. And although she retains her pro-choice position throughout the narrative, she also challenges the assumptions that go along with the choice to abort based upon a prenatal diagnosis of Down syndrome.
She writes, "All the attention and resources poured into prenatal testing guaranteed that Henry's world was also a place where health care professionals often saw him as a failure of medical science." And health care professionals are not the only ones, as Adams is barraged by friends, colleagues, and other mothers who ask, with some measure of incredulity, whether she had pursued prenatal testing, as if Henry should not exist if only his mother had been more prudent.
But Adams's story is not one of a medical mistake or of a mother who carelessly failed to gain crucial information about the baby growing in her womb. Rather, she tells the story of a baby who successfully forges relationships of love and care with his brother and mother and father and teachers. She tells a story that indirectly challenges the cultural narrative that Down syndrome is a tragic mistake technology allows us to avoid.
In addition to bearing witness to the value of Henry's life within their family and community, Adams also successfully weaves together her personal narrative with her academic background as the person who, literally, wrote the book on freaks—men and women whose bodies were so unusual that they often displayed them for pay. Adams gained tenure at Columbia after the publication of her first book, Sideshow U.S.A.: Freaks and the American Cultural Imagination. Her intellectual work studying freaks offers her a framework for receiving her son, and her writing is at its very strongest when she is relating Henry's story through her academic lens.
Adams' professional training combines with her personal experience to offer insightful critiques of both the intellectual establishment and the medical field. She details the ways in which doctors treat Henry like a specimen instead of a baby boy:
It was 2009. 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. In the nineteenth century, when the lines between medicine and show business were fuzzier, freak shows often made a place for doctors….In return, freak shows provided doctors with a steady stream of medical curiosities to examine and study. As long as a doctor was present, the freak could be poked and prodded, discussed and exposed, all in the name of science…
Adams experiences a personal version of the 19th-century freak show as the doctor examines Henry only in order to point out his anomalies: the unusual line across his palm, the additional fold around his eyes.
Adams critiques the medical profession for its clinical attitude, but she turns a critical eye upon herself and her guild as well: "In the circles I frequented, where intelligence and intellectual achievement are valued above all else, we talked a lot about our appreciation for diversity. But that appreciation didn't usually extend to intellectual diversity…." She struggles personally with Henry's cognitive delays, and as much as she was drawn to freaks as a subject of inquiry, she also finds that "what I wanted for my own son was for him to be as ordinary as possible."
Creation, Catastrophe, and Redemption
In time, Adams grows in her acceptance of who Henry is, even as she strives to secure therapies and educational environments that will allow him to thrive. She also channels her newfound passion for the inclusion of people with disabilities into work at Columbia, where she becomes the director of the Future of Disability Studies program.
Adams's story follows the familiar path of any good novel or memoir, and its narrative structure should be familiar to Christians. It is a story of creation, catastrophe, and redemption, though her story comes without a theological lens. Her in-laws are the only Christians in the narrative, and, thankfully, they are not heavy-handed about their beliefs but simply demonstrate love, care, and acceptance whenever they are around Henry. Certainly Christians reading this book will sense the absence of a church community that could have offered prayer and practical help, but from a Christian perspective this book might better stand as an example of common grace. Adams never calls upon God, but she does talk about the ways in which she was "prepared" to have Henry due to her academic work on freaks, and she even calls him a "miracle baby" because a prenatal diagnosis might have led her to an abortion.
Raising Henry offers plenty of fodder for discussion of the place of individuals with cognitive disabilities within our society, the role of prenatal testing, and the problems inherent in the medical and intellectual establishments when it comes to disability. But it is the story Adams tells—of a pro-choice intellectual liberal who celebrates the life of her son—that matters most. Adams never defends her choice to forgo an amniocentesis. She doesn't need to. Henry's life speaks for itself.
Amy Julia Becker is the author of A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany House). She blogs at Thin Places: Faith, Family and Disability.
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