In 1981, Connie Baker was a recent recipient of a master's degree in family relations and child development from the University of Oklahoma. After receiving her degree, Baker began work as a child therapist at Hillcrest Medical Center in Tulsa, Oklahoma. Along with Donna Wong, a pediatric nurse and pain management consultant to the hospital, Baker treated child burn victims, among other pediatric patients in severe, regular pain. For some patients, Baker says, treatment was exceedingly difficult; their pain was too severe to express. Without even a partial reckoning with their patients' experience of pain, the pair could neither manage nor resolve their patients' suffering.
To this day, there is little consensus among pain experts about the systematic measurement of personal pain; in the early 1980s, the practice of pain measurement was even less developed. At the time, the American field of pain studies was still in its infancy. World War II had been an unfortunate boon for the empirical pain research; the first large-scale trials on pain and pain relief in the United States occurred in Veterans Administration hospitals established and expanded for wounded soldiers returning from the war's multiple fronts.
The patient’s pain and the decision by multiple organizations to withhold care were fashioned by political judgments about the severity and legitimacy of the person’s pain. In turn, the patient’s external experience of private pain may shape the evolution of public opinion about its relief.
After the creation of federally funded Social Security Disability Insurance in 1956, public debates over the meaning and legitimacy of personal pain pushed the American medical community to adopt new standards for pain measurement and evaluation.
As pain research expanded, ordinal rankings of a patient's pain—"pain scales," as they are now called—achieved wider clinical use. These scales often asked patients and their doctors to associate a numerical ranking of their own pain, such as one through 10, with a restricted set of descriptive terms: the McGill Pain Questionnaire, first released in 1971, separates words like "tiring" and "sickening" into distinct descriptive categories. A later scale, the Brief Pain Inventory, asks patients to assess pain as a varied experience of impairment, rather than a uniform state of being: an ordinal scale, three through eight, asks patients to describe escalating levels of disability. Such scales have served an important purpose for researchers, who struggled—and still struggle—to quantify and compare different pain experiences between multiple subjects.
But the children Baker and Wong saw in the early 1980s rarely found existing pain scales useful. "It's difficult to think in terms of numbers when you're in the recovery room," Baker says when asked about the use and limits of pain scales in that early era.
At a loss for alternatives, Baker and Wong began to ask patients to design scales of their own. The pair would present their patients at Hillcrest with a set of six numbered circles, which the children would fill in with the varying facial expressions of a person in pain. A sketch displayed on the website of Baker's foundation demonstrates a common outcome of the pilot task: faces with gradually rounder frowns, off-center eyes, and multi-colored hair. The similarity between each child's individual drawings soon became apparent to the researchers, and Baker and Wong commissioned a standard sketch based on their common features. According to Baker, those images and their affiliated pain scales are now used by pain specialists and physicians in 167 countries. The pain scale has also gone extraterrestrial: in recent years, astronauts at the International Space Station have used the scale to measure experiences of pain in outer space, such as lower back pain.
The creation of the Wong-Baker FACES Pain Rating Scale, as the pair's pain scale is now called, occurred amid a nationwide upheaval in the collective perception and politics of pain.
During her early years as a child therapist, Baker says, children in pain were "undermedicated"—in the pharmaceutical sense, but also in physicians' perception of the legitimacy and gravity of their suffering. In the early 1980s, President Ronald Reagan's Food & Drug Administration loosened restrictions on the sale and distribution of many major pharmaceuticals, including pain relief medications. At the same time, administration officials established rhetorical boundaries around the types of pain that warranted treatment, medicinal and otherwise. These new measures were buttressed by the resurgence of a socially conservative electorate and its Congressional representatives. The type of care the Wong-Baker Scale represents—empathetic, responsive—was as much a response to the rejection of that care in the public eye as to the specific needs of the children themselves.
That the experience of suffering evokes strong disputes over the individual and collective control of the human body should come as no surprise to those who followed the eventual passage of the Affordable Care Act in 2010, or who follow contemporary public debates over sexual assault on college campuses.
That notion—that pain is political—is the central concern of two recent histories of pain, The Story of Pain: From Prayers to Painkillers, by British historian Joanna Bourke; and Pain: A Political History, by Keith Wailoo, a historian and dean at Princeton’s public affairs school. As Bourke writes, “Bodies [in pain] are not simply entities awaiting social inscription, but are active agents in both creating social worlds and, in turn, being created by them.” The creative dualism of the body in pain is dynamic: it interacts with and defines the limits and possibilities of political power over space and time. But how?
Consider, hypothetically, a Stage IV osteosarcoma patient diagnosed in 2008 at a New York hospital. The patient is in severe pain, a consequence of the tumor’s spread from the patient’s bones to her lymph nodes. The ACA has not yet been passed, and the patient is not yet eligible for Medicare coverage. Excluded from affordable insurance coverage by her cancer diagnosis, the patient’s pain relief options are also cost prohibitive. Medical marijuana is not yet legalized in New York, and the patient is left with only over-the-counter medications. As the cancer spreads, the patient’s pain worsens and expands. Both the patient’s pain and the decision by multiple organizations to withhold care were fashioned by political judgments about the severity and legitimacy of the person’s pain. In turn, the patient’s external experience of private pain may shape the evolution of public opinion about its relief.
The children Baker and Wong saw in the early 1980s rarely found existing pain scales useful. "It's difficult to think in terms of numbers when you're in the recovery room."
Public interpretations of pain are the contemporary fault line between American liberalism, a politics of compassion, and conservatism, a politics of skepticism, according to Wailoo. For Wailoo, the experience and treatment of pain among American citizens were the bedrock on which the country’s post-war welfare state grew and flourished. Through the late 1960s, services like veterans’ care, SSDI, Medicare, and Medicaid reflected the American state’s growing responsibilities to a growing number of citizens in pain. These programs offered war veterans, persons with disabilities, older citizens, and poor people, respectively, an important but limited benefit of a broader American citizenship. Unfortunately, those benefits proved short-lived. The recognition granted to Americans in pain shrank almost as quickly as it emerged.
As early as 1977, President Jimmy Carter’s welfare chief began to shift his department’s attention from expanding SSDI’s beneficiaries to combatting alleged fraud among individuals already insured by the program. Cuts by Reagan’s Department of Health and Human Services were even more drastic; reforms by HHS secretary Richard Schweiker between 1981 and ’83 severed payments to more than 490,000 Social Security recipients, including those covered under SSDI.
Supporters of the Reagan administration’s SSDI cuts often questioned the mental health of the program’s beneficiaries, as well as of those outside the program who sought relief for both temporary and chronic pain. Wailoo references Reagan himself, who, during his first year in office, used the allegedly representative case of California’s “criminally insane” to fully malign public welfare programs like SSDI.
Elsewhere, Wailoo quotes Steven Brena, an Atlanta-based pain expert whose work received wide acclaim from conservative detractors of disability-welfare recipients: “‘Chronic pain is often a conditioned socioeconomic disease.’” Brena’s observation is not that pain is a consequence of disease, but that the experience and expression of pain are an ailment of excessive imagination. Because pain is claimed by those on society’s margins—racial minorities, transgender persons, the "criminally insane"—and because that pain is created by the experience of those margins, it cannot possibly exist.
The task of demonstrating pain, of proving it in defiance of these detractors, often falls to those it afflicts. A rich literature—fiction, non-fiction, and something in between—describes and grants public meaning to the private experiences of persons in pain. This literature is not a new phenomenon; as Bourke observes, variations on the personal pain narrative are embedded in the history of both religious and secular writing.
For certain Christian denominations, understandably concerned with the relationship between sin and suffering, the expression of pain was often a form of confession. In contrast to the intimate quarters of the physical confessional, however, this confession was public. Like Christ’s suffering, the pain of his followers became a model of divine grace and human “imperfection.” As Bourke discusses, suffering became “spiritually productive” when worshipers bore witness to and learned from the experiences of others in pain—that is, when it was experienced as a communal rather than exclusively personal event.
Religious pain writing is very much a contemporary genre, as a recent spate of evangelical memoirs of near-death experience suggest. However, the literature of pain is also increasingly saturated with secular writing, more responsive to the successes and failures of clinical medicine than to the varieties of religious experience. This literature resists systematic review: it is vast and varied, and continues to grow and diversify as writers explore the boundaries of pain’s literary representation.
These writers struggle with themes familiar to pain experts like Baker and Wong: How can the experience of pain in a complex human body possibly be described? As a result, this writing is often a commentary on the weakness of language, rather than its power. Where lyricism fails, the clinical language of diagnosis is its only substitute.
“Bodies [in pain] are not simply entities awaiting social inscription, but are active agents in both creating social worlds and, in turn, being created by them.” The creative dualism of the body in pain is dynamic: it interacts with and defines the limits and possibilities of political power over space and time.
In Sarah Manguso's Two Kinds of Decay, a memoir about encounters with a rare autoimmune disease, the writer grapples with the inconclusiveness of her doctor's attempts at clinical precision. After months of diagnosis, hospitalization, and treatment, "chronic idiopathic demyelinating polyradiculoneuropath," Manguso's final diagnosis, carries a peculiar power. For Manguso, there is relief in knowing the source of her pain, even if that source is an obscure term of clinical jargon.
Beyond the limits of language, these works also reflect the public's failure to acknowledge and relieve their writers' private pain. A full chapter of Andrew Solomon’s The Noonday Demon, a part-memoir, part-dispatch on the experience of depression that was published back in 2001, describes the consequences of depression for an individual’s life amid ubiquitous stigma. He writes: “People who had ‘come out of the closet’ and spoken publicly about being gay … were still too embarrassed to talk on record about being depressed." The stigma of others, including friends and family, made the social lives of Solomon’s subjects intolerable, but it also limited options for the treatment of their pain.
In pain writing, public objections to the writer’s pain mimic the language used against disability-welfare recipients in the 1980s; for those whose pain emerges from mental illness, the emotional weight of that response is even more significant, and its consequences even graver.
The expression of pain is a bridge to a public commons, a mechanism for the writer to articulate the moral boundaries of the world around him. It is not, however, a simple matter of the lines between liberal and conservative standards of pain, as Wailoo suggests.
Wailoo plainly presents the limits of a conservative standard that claims a moral high ground while denying relief to a motley assortment of minorities in pain. He spends less time discussing the shortcomings of the liberal standard, which has its own history of insufficient care and relief.
A thread of pain writing, often by women writers, LGBT writers, or writers of color, has emerged to observe and capture these failures. Where the liberal standard grants simple recognition to the individual experience of pain, the alternative, a radical standard of pain, acknowledges the intersection between individual and collective histories of suffering. This radical standard is the thrust of works like Leslie Jamison’s essay “Grand Unified Theory of Female Pain,” a careful celebration of the “post-wounded woman,” and Saeed Jones’ Prelude to Bruise, a collection of poems that narrates the wounds of a black gay boy in the American South.
In a short essay published on the New York Times’ website in January, Jones recalls an internal mental loop from the aftermath of the murder of James Byrd Jr., a black man in Jasper, Texas: “Being black can get you killed. Being gay can get you killed. Being a black gay boy is practically a death wish.” To be black in America, Jones seems to say, is to live in pain. To write about that pain as black, as gay, he continues, is to relieve it.