Raising Generation Rx

Mothering Kids with Invisible Disabilities in an Age of Inequality

Linda M. Blum

• Publisher: NYU Press
• Year: 2015
• ISBN:
  9781479819508
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Winner,2016 Outstanding Publication in the Sociology of Disability, American Sociological Association, Section Disability and Society Recent years have seen an explosion in the number of children diagnosed with “invisible disabilities” such as ADHD, mood and conduct disorders, and high-functioning autism spectrum disorders. Whether they are viewed as biological problems in brain wiring or as results of the increasing medicalization of childhood, the burden of dealing with the day-to-day trials and complex medical and educational decisions falls almost entirely on mothers. Yet few ask how these mothers make sense of their children’s troubles, and to what extent they feel responsibility or blame. Raising Generation Rx offers a groundbreaking study that situates mothers’ experiences within an age of neuroscientific breakthrough, a high-stakes knowledge-based economy, cutbacks in public services and decent jobs, and increased global competition and racialized class and gender inequality. Through in-depth interviews, observations of parents’ meetings, and analyses of popular advice, Linda Blum examines the experiences of diverse mothers coping with the challenges of their children’s “invisible disabilities” in the face of daunting social, economic, and political realities. She reveals how mothers in widely varied households learn to advocate for their children in the dense bureaucracies of the educational and medical systems; wrestle with anguishing decisions about the use of psychoactive medications; and live with the inescapable blame and stigma in their communities.

1

Mother-Child Troubles, Past and Present

In the kid world, too nice equals way nerdy; in the grown-up world, too naughty translates to, well, Ritalin. Below are the holiday season’s best ways to keep pint-size characters stylish and happy, whether they’re strolling the primrose path, walking on the wild side—or caroming back and forth.

—Ellen Tien, “Don’t Make Santa Guess, Dress the Part,” Sunday Styles, New York Times, November 25, 2007

The breakfast buffet at Camp Echo starts at a picnic table covered in gingham-patterned oil cloth. Here, children jostle for their morning medications: Zoloft for depression, Abilify for bipolar disorder . . . and a host of medications for attention deficit disorder. . . . The dispensing of pills and pancakes is over in minutes, all part of a typical day at a typical sleep-away camp in the Catskills.

—Jane Gross, “Checklist for Camp: Bug Spray. Sunscreen. Pills,” New York Times, July 16, 2006

Every book has a moment of conception, even if the period of gestation, as in this case, is a very long one. This book began as a tiny embryonic idea in 1996 when, like so many mothers of children struggling to navigate their social worlds and perhaps “caroming” between “naughty” and “nice,” I scurried to pick up my second-grade son from the after-school program at our quiet suburban elementary school. Once home, he hesitated, but then burst out with his half-secret question, as if he’d learned some new “swear word” on the playground: “Mom? Sean was going, ‘Your mother has ADD. Your mother has ADD.’ Do you have it? What is it?”

Wow: your mother has ADD. My colleagues at work thought this was simply hilarious, the new “yo mama” of the nice white ’burbs. My own initial reaction was also to laugh, to hear it like the recurring references to ADD (or attention deficit disorder) and “pills and pancakes” among the high-status parenting fads often featured in the pages of the New York Times Fashion & Style section. To reassure my lanky seven-year-old, my gifted boy with his ill-defined vulnerabilities, almost without thinking I fell on the authority of neuroscience. I explained blandly that doctors think attention deficit disorder affects the brain’s chemical balance and that the imbalance makes a person too jumpy and distracted to work. But I ended on an upbeat note; the imbalance can be corrected with medicine. And I tried to reassure: if I did have ADD, it was news to me! And it certainly hadn’t posed any problems for my work. Since he was all too aware of the hours I spent holed up in my study, he seemed satisfied. Yet as I mulled it over later, I thought how simplistic my response about brain chemistry had been, when the playground chant carried layers of dense cultural meaning. The inversion of race and class disadvantage that my colleagues heard intrigued me,1 but I also heard with this (elite?) attempt to impugn our family’s respectability, a twist on boyhood rituals of shaming and taunting. Rather than explicitly targeting a peer—like the boys incessantly calling one another “retard” when I was growing up, or those decades later captured in C. J. Pascoe’s ethnography incessantly calling one another “fag”2—“your mother has ADD” seemed to displace stigmatized difference from a boy’s body to a mother’s brain. This thought was, of course, troubling personally, but what did it signal about our culture if seven year-old boys hurled such labels for invisible brain imbalances and hard-wiring flaws at mothers and sons?

This book begins from the several very clearest factors signaled: the growing prevalence of diagnoses like ADD among U.S. kids, the growing cultural preoccupation with such invisible disabilities and the medications used to treat them, and the pressures and stigma mothers face in dealing with these new diagnoses and treatments. But there are also several larger factors, just behind the scenes, I believe are signaled which figure importantly in this book. First, this is a book about persistence and change in twenty-first-century U.S. families and gender arrangements. Such arrangements have been changed by the wholesale entry of mothers into the labor force and, as I will come to below, the declining opportunities for men’s breadwinning. Yet this is, nonetheless, a book about how we persist in assigning mothers primary responsibility for children and the major share of blame when things go wrong. Second, this is also a book about the New Economy and the postindustrial workers it now requires, with sharp divides between its winners and losers. And third, this book is about the neoliberal ideology or belief system which undergirds this high-stakes New Economy, a belief system valuing individual over public responsibility or government protection, beliefs that have created a more challenging context for family life and childrearing in the United States today. In the chapters to follow, I continue to unravel the influence of these three interrelated social factors while moving squarely to the major project of this book: examining how mothers differently situated in this reconfigured social world navigate its institutional arenas on behalf of vulnerable children, taking personal responsibility for their entrance into a yet more perilous future.

But Why Study Mothers?

Historians instruct that mothers have consistently been thought of as the sources or carriers of their children’s troubles, though how transmission has been understood has varied. Shifts in past centuries from religious to scientific worldviews relocated the source of mother-harm from the mother’s tainted soul to her disordered body, and then to various conceptions of her disordered mind, some more embodied and biological than others. The valorous mother of the modern scientific era has been defined in polar opposition to such disordered, disreputable mothers. With her own fit body, mind, and moral character, she devotes herself to the promotion of her children’s and thus the nation’s health. She is, therefore, the source of our next generation of productive, well-adjusted citizens.

The stark normative divide between immorality and ill health on the one hand and order, fitness, and productivity on the other, serves to discipline all mothers as we perform boundary work to distance ourselves from any hint that we or our children might ever tax or pollute the community. White middle- and upper-middle-class families like my own have a distinct advantage in this boundary work, as we have the resources to promote our children’s demonstrable virtue, attractiveness, and achievement; and to be blunt, our skin color distances us from the long history associating deficiency, degeneracy, and ill health with racialized others. Yet disability, at least in part, signals similar disreputable traits: the unruly and impaired child burdens the community’s resources, threatens to disrupt its sense of order and safety, and raises questions about the mother’s physical, mental, and moral respectability. Strikingly, we count more of the nation’s children as disabled, and in forms more invisible or nebulous than in past eras, raising questions about maternal fitness in our New Economy era of global competitiveness and volatility. Simply put, can the many mothers caught up in this medicalization, many of whom administer psychoactive medications to their kids and seek added services from over-burdened schools and healthcare systems, still be considered good, respectable mothers who secure the nation’s future?

I begin to answer this question by considering how a group of forty-eight mothers, widely varied in their social backgrounds and present social locations, wrestled to make sense of their children’s troubles, the extent of their own responsibility, and the confusing array of treatments, services, and interventions they might pursue through the educational and medical systems to protect their children’s future odds for productive citizenship. While I also observed at special-education parents meetings in several districts, conversed with many other parents, and analyzed professional and popular texts, my major argument rests on the words of the mothers with whom I spoke in greatest depth. My argument about their differences will be multilayered: nearly all the mothers attempted on their own to expertly negotiate the many maze-like obstacles of the educational and medical systems governing invisible disability, defining a mother’s responsibility to be relentless in efforts to mitigate her child’s issues and the stigmatized difference surrounding them. But at the same time, mothers’ options for managing a high-need child were shaped by distinct yet interrelated dimensions of social privilege: their class resources,3 whether single or married, their ethnoracial location, and the gender and race of their unruly children. Institutional and cultural sorting processes frame the perception and handling of mother-child troubles, I discovered, along these complex lines of advantage and disadvantage, sometimes in paradoxical or counterintuitive ways. With such divergent understandings of mother-child troubles, I argue that we risk masking rising inequality and our collective responsibility for New Economy divides behind newly revised forms of mother-blame.4

In my own swirl of emotion and intellect as a mother and feminist sociologist, I had already spent a good deal of time reading about historical understandings of causality, guilt, and children’s troubles and how each new science claims to better capture how things go wrong. I discovered that older discourses about not-normal children may fade but are not quite forgotten in the face of new knowledge. In recent decades, for example, neuroscience and biological psychiatry have made important discoveries about the brain’s structure and electrical-chemical processes through new drugs and imaging technologies. And several scholars have asked what happens to mother-blame with this neuroscientific turn to innate brain-based explanations for children’s troubles. Each found mothers only partially absolved of the blame so predominant during the mid-twentieth-century heyday of Freudian psychiatry.5 Freudian psychodynamic theories had centered child troubles wholly on mothers’ lack of emotional fitness, most famously in Bruno Bettelheim’s psychogenic, frigid or “refrigerator” mothers directly blamed for causing their children’s autism.6 And while I take this up in subsequent chapters, I discovered that lack of fitness is now more expansively, if indirectly, defined. Among those I interviewed, mothers emphasized new forms of proximate, secondary blame and self-blame, not so much for causing children’s troubles as for falling short of the standard of relentless expert management of a child’s innate brain issues, whether differences, flaws, or imbalances.7

I refer to this way of thinking about children, or really each of us, as “em-brained,” a useful term from sociologist Victoria Pitts-Taylor.8 Much as I had when unthinkingly explaining ADD to my young son, it signals the neoliberal belief that the brain is an embodied object to be individually managed, manipulated, and optimized for improved productivity rather than the site of a potentially deep, self-reflective, unmanageable mind. In the case of normal and not-normal children, each mother must take on this responsibility. But to approximate this neoliberal mission, I discovered that mothers of not-normal children were compelled to master more than the new brain science, but also the highly technical domains of special-education policies and disability law, child psychiatry, an array of related professional fields, and the psychopharmacology that specializes in psychoactive medications.

In the past, mothers who lacked race or class privilege, or the protection of heterosexual marriage, had been believed most at risk for raising degenerate, unfit children. In the chapters to follow, I explore the extent to which fears of those whose offspring would pollute and burden the country are still pushed on to such other-ed women. The category of “disability” itself was originally constructed on the back of such social differences, although primarily to sort adult men into those few deserving public assistance from the larger number of the undeserving. In our era, aspects of sorting still occur in schools and for limited and increasingly stingy forms of public assistance (such as Medicaid or Supplemental Security Income), and I examine these closely in a later chapter. However, the very meaning of disability is transformed, perhaps into several meanings, with increasing numbers of children labeled with terms like ADD and ADHD (attention deficit hyperactivity disorder), other learning disorders, disorders on the autism spectrum, or with any of a host of emotional disorders now crossing all divides of privilege and advantage. In fact, the most prevalent of the invisible disabilities, ADD and ADHD, as well as the autism disorders, seem to have become more evenly distributed across levels of income over time9—though I will suggest that meanings and experiences vary significantly and are more stigmatizing for single mothers and those raising children of color. In the course of this research, I also learned how complicated it is to simply count, with all the invisible disabilities said to be “high in co-morbidity,” meaning that many kids will be diagnosed with more than one such disorder. And I learned that all invisible disabilities are subject to much clinical or diagnostic uncertainty, with neuroscience yet to find clear biomarkers even through brain imaging.10 The frustration with uncertainty was a major theme sounded by the forty-eight mothers who shared their stories with me, widely shared across gulfs of economic and cultural resources, as will be seen in chapter 2. Even the affluent, whom I examine in chapter 3, told of shifting or conflicting diagnoses typically beginning with ADD or ADHD but then encompassing combined or different labels.11

In this book I examine the distinct meanings of these invisible disabilities from mothers’ perspectives through a feminist sociological lens. This means, simply put, that I treat women as important, knowing subjects, allowing them as far as possible to construct their own narratives, in their own language and with their own ways of drawing from or challenging dominant discourses.12 Moreover, rather than taking a strictly constructionist view of invisible disability that pits itself against the biomedical or neuroscientific lens, I attempt to treat invisible disabilities as both real, embodied, and as cultural inventions specific to our time and place. Cultural theorist Majia Nadesan similarly attributes the rise in invisible disabilities to a “dialectic of biology and culture” in which subtle differences come to matter, to be made different, only at a particular historical moment—but they are nonetheless real.13 I am deeply indebted to those who consider burgeoning medical and neuroscientific labels less real than this, but my feminist approach cautions that we should balance such perspectives against attention to those with intensely real lived experiences.

In lengthy interviews, mothers I spoke with revealed that they were neither overreacting to the normal vicissitudes of child development nor being duped by Big Pharma,14 evil professionals, or a high-stakes culture into blithely labeling and medicating their kids; rather, they were attending to children, not severely impaired, but only quite “precariously normal” and “liable to slip into inappropriate or problem behavior without constant vigilance.”15 At the same time, as this quote suggests, the medicalization of such “precarious normal[ity]” happens within a larger social landscape—a landscape I sketch out in this chapter—fueling the anxieties many of us have for our children’s futures. If there is a cultural story I would emphasize in the fast increase of kids’ invisible disabilities, it is one of these anxieties about an uncertain world in which boundaries of privilege within and outside the United States are being redrawn and perhaps only the most vigorous-brained will succeed. We might also call this confluence of factors “the age of neuroscience” for, according to cultural theorist Davi Johnson Thornton, “brain-based healthism” and “popular neuroscience [are] changing . . . ultimately, how we understand and live our lives” at a time when “having a normal brain”...