At the end of this knowing and beautifully written book, anthropologist Danilyn Rutherford summarizes her academic training as having taught her, “There is nothing outside language”. But, she continues, “my life has had something different to say”.
The book is a memoir of Rutherford’s life with her daughter, Millie, who was born with a condition that never has received a diagnosis, but that means that “the list of typical things Millie cannot do is long. She is legally blind…. She doesn’t talk, feed herself, or reliably use a toilet. She has a wheelchair and rides in an adaptive van”.
On the other hand, though (and this book is an extended reflection on that other hand), Millie “can use her peripheral vision to pick out an electrical cord or a ribbon on the other side of her bedroom. She will laugh at the sound of a joke. She does pretty well with the toilet if you keep her on a schedule. And, if you help her, she can walk”.
Help, dependency, vulnerability, and relationships are the nerve of this narrative. One could say it is about ‘resilience’, but I suspect that the author might object to that arguably patronizing label. I felt it a shame that the title Thoroughly Modern Millie already has been taken, because that is really what this book is about: how an individual who has no verbal language, whose desires and needs largely are interpreted by others through various degrees of guesswork, and who requires a cadre of paid support workers to help to do just about everything, is a thoroughly modern (or maybe, a thoroughly postmodern) subject of value, fulfillment, contentment, challenge, and joy.
The book begins with a kind of double whammy: Rutherford gives birth to her second child, Millie, who “was perfect in her way, but something was missing. A sparkle, a spark, a little flame, hints of the grown-up this newborn would become”. As Millie grows older and doesn’t make eye contact, develop muscle tone, or display motor skills, her parents increasingly feel worried. Thus begin the visits to a parade of medical specialists who at first insist that Millie is “delayed” but fine, and then carry out seemingly endless physical and neurological tests that ultimately offer no real explanations.
Then, when Millie is three years old, Rutherford’s beloved husband, Craig, suddenly dies in the middle of the night of a blockage to his coronary artery. Rutherford is left alone with a significantly impaired daughter and a six-year-old son.
Except she isn’t alone.
Beautiful Mystery is filled with the names, activities, and voices of teachers, care providers, speech therapists, physical therapists, therapists who help the author manage grief and start dating again, lobbyists, communication consultants, fellow parents of disabled children and those children, friends, family, and colleagues—in addition to imparting insightful summaries of discussions about debates in philosophy, disability studies, and elsewhere that discuss significant disability and what it implies for personhood, responsibility, engagement, and care.
At the center of all this is Millie, whose vulnerability, Rutherford insists, is a form of power: “Millie has forced us to cultivate an ability to notice and respond”, she says, referring to scores of people who have been involved with her daughter over the years. “We get Millie—which means we get what it takes to care deeply about someone we will never fully understand”.
Memoirs about raising disabled children, perhaps unsurprisingly, are mostly written by relatively privileged people: Angel Unaware, the most famous book of this genre (narrated in the voice of Robin, a girl with Down syndrome who has died and gone to Heaven and is talking directly to God) was written by Dale Evans Rogers, the celebrity wife of American film and television star Roy Rogers. Ian Brown, the author of The Boy in the Moon, about life with his disabled son Walker, is an award-winning journalist. Anyone who knows anything about the academic discipline of disability studies will have read books by literature scholar Michael Bérubé about his son Jamie and by philosopher Eva Feder Kittay about her daughter Sesha.
All of those books use a meditation on life with a disabled child as a way of talking about other topics—faith, in the case of Evans Rogers; the meaning of a diagnosis for Brown; social inclusion and disability rights for Bérubé; liberal ethics for Kittay.
Beautiful Mystery engagingly discusses most of those things as well (although seeing disability as an inspirational Divine test of Christian faith isn’t one of them, thank God). And wizened anthropologist that she is, Rutherford also grabs the privilege bull by the horns and acknowledges it: “Millie’s world is also built of privilege”, she observes, “the privilege that affords her a home, excellent services, plenty of sunshine, fresh air, good food, and the companionship of well-paid care providers”.
What emerges clearly in this book, though, and in all those others, is that having a disabled child is a great leveler. In addition to becoming enmeshed by what Erving Goffman poignantly called the ‘courtesy stigma’ of being close to a person with a disability—which involves having to get used to being stared at, grimaced at, whispered about, insulted (these days, often unintentionally, when strangers say things like “You’re a saint”), and, if you are the school-age sibling of such a person, teased and mocked—a disabled child demands that one become well-schooled in legislative intricacies, bureaucratic paperwork, and cunning strategies of persuasion. Rutherford remembers how her sister-in-law told her and her husband, “If you don’t know your rights, you’re screwed”. And “sure enough”, she relates, “Craig set about hoovering up every scrap of information he could find. He mastered the acronyms: ADA (Americans with Disabilities Act), IDEA, and IEP (Individualized Education Program). He memorized that magic spell ‘a free and appropriate education in the least restrictive environment’ and learned to wield it”. Towards the end of the book, Rutherford notes wryly: “I make as much money as anyone in my field, but this [the costs for Millie’s care, which she has just sketched] is still more than I can afford. Never retire? Without state support, I’ll never be able to die”.
One effect of information like this is that Rutherford extends an invitation to imagine what the lives of families with disabled children who don’t have university educations and upper-middle class incomes might be like. And that is a very sobering thought.
Sociolinguists and others who are concerned with language in society will find in this book a profound reflection on what it means to live with a person who has no recognizable language. It is a nimble deliberation on the texture of relationships, of their significance, of their development, and of their unexpected capabilities. It is a moving treatise on what it means to love.
“Once upon a time”, Rutherford recounts, “I thought what mattered was language”. As with all stories that begin with those words, the ending here is “happily ever after”.
And in between those bookends, an adventure awaits.
