Editor's Preface

When she was only two, my daughter aspirated a peanut. Looking back, I am amazed at our parental lack of awareness: we did not realize, for example, that something as innocent as a peanut could be dangerous to a small child. When we noticed that her breathing was accompanied by a barely audible whistle, we took her to our pediatrician, then to a specialist, and suddenly—in great haste as Katy began to lose consciousness and turn a pale blue—to a hospital where an ENT surgeon awaited us. Within hours he performed a bronchoscopy (insertion of an instrument into the bronchi of the lung) and removed whatever he could of the peanut, which by then had partially disintegrated. We spent the rest of that long summer in and out of the hospital; Katy underwent the procedure five times over four long hospital visits. We took turns staying with her around the clock, sleeping on a foldout cot in her hospital room. Each time we brought her home, it seemed that we would finally be getting back to normal, and then her temperature would slowly begin to climb until another return to the hospital became necessary for another bronchoscopy. Eventually, there did come a time when the infections stopped. Katy is now a graduate student at New York University as well as a talented dancer and a superb teacher. She remembers little if anything about her illness. But for us, as for so many parents, the experience of a child's life-threatening illness was like a loss of innocence—or, perhaps, a coming to awareness.

I think it no accident that my present work as a professor of medical humanities has taken me to our hospital's pediatric HIV clinic, where I have been a weekly observer for the past four or five years. Each of the patients I encounter at the clinic has a story, and in each story the child's illness is the nexus of complex social, moral, legal, and political issues. I wrote a book about these children and their families, ¹ but even though the book is completed, I still feel compelled to go to the clinic and greet them when they come for an appointment. Behind my concern for these children is my experience, years ago, with a very sick child of my own. I have come to realize the wider implications of what began so long ago as a purely personal experience. Most of the children in our HIV clinic are being raised by foster parents or relatives, their parents having succumbed either to HIV or to societal problems like drug addiction and prostitution. How I respond to these children and their stories is intimately connected to my responsibility to them. I now believe that those of us who thrive in this society—a society that is at the same time so wonderful and so terrible—are responsible for the children who are born into it.

Such a sense of the cultural centrality of the child is—historically speaking—relatively recent. In a widely admired and highly influential study, Philippe Ariès contends that until the mid-seventeenth century there was no recognition of childhood as such: children were regarded and treated as small adults. ² Though I am skeptical of such drastic historicizing, it does seem that around the time that Jean-Jacques Rousseau wrote his major works (the second half of the eighteenth century), a new understanding of childhood and its importance began to dawn. Challenging accepted doctrines of the natural depravity of humankind, Rousseau argued that children are naturally good and that their education and development are crucial to human civilization. Not surprisingly, Rousseau's Confessions (1784) begins with his earliest memories of reading at the age of five or six: "from that time I date my uninterrupted self-consciousness." ³ It is ironic, given Rousseau's legacy of an enlightened appreciation of childhood, that he is said to have placed the five children born to his...