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This history of the recognition, research, and treatment of sickle cell anemia provides important insight into the African American experience, race relations, and the politics of science, medicine, and disease. This history of the recognition, research, & treatment of sickle cell anemia provides important insight into the African American experience, race relations, & the politics of science, medicine, & disease.
Wailoo's comprehensive telling is the definitive story of race and health in the United States. (Library Journal)
This unassuming masterpiece of revelation focuses a new, more precise lens on the intersection of race, illness and politics. (Publishers Weekly, starred review)
A brilliantly original approach to understanding the shifting nature of race relations over time as well as a unique perspective on the twentieth century history of Memphis. (Memphis Commercial Appeal)
This remarkable text on the social construction of the illness speaks of how ancient, bloody, brutal and enduring the facts of racial disparity in health and care really are in the American experience. (Nature)
Copyright © 2001 The University of North Carolina Press.
All rights reserved.
Pain and Suffering in Memphis
Throughout history, numerous diseases have been used to draw attention to the African American body and to represent particular aspects of the "African-American condition." In the 1850s southern physician Samuel Cartwright invented "dyaesthesia Aethiopis," a disorder that he claimed caused "obtuse sensibility of the body" and insensitivity "to pain when subjected to punishment" in slaves. The "disease" was a convenient invention, for it could be used to highlight just how different enslaved blacks were from their white owners. Biological difference could be used to excuse plantation whippings and to explain the excessive brutality of slavery. Throughout the nineteenth and twentieth centuries many other conditions, syndromes, and pathologies among blacks—from tuberculosis to venereal disease—have been used similarly to moralize about African American status, sexuality, intelligence, education, or economic condition. Whether these discussions focused on what we term "real" pathologies or invented ones, the discourse of "Negro disease" has always reflected deeper moral quandaries in society. Were black people degraded by or biologically suited to slavery? Was black sexuality a danger to whites and to society? Were black people sicker because they were innately different, or because they were kept socially unequal in America? The stories of particular maladies have been mined and interpreted throughout history because they appear to provide the answers to such questions.
The discourse of black disease has often been stigmatizing and controversial, but occasionally narratives of black pathology have also been uplifting. In 1930, for example, a blues guitarist with the stage name of Memphis Minnie brought an obscure disorder into public light, seeking to sow the seeds not of fear or revulsion but of compassion toward ailing African Americans. In her "Memphis Minnie-jitis Blues," the artist Lizzie Douglas sang:
My head and neck was painin' me
Feel like my back would break in two
My head and neck was painin' me
Feel like my back would break in two
Lord I had such a mood that mornin'
I didn't know what else there was to do.
In the lyrics that followed, Douglas sang of the excruciating pain of meningitis, the diagnostic confusion of the doctor, and the enduring faith of her companion. The lyrics dramatized a common, often epidemic, disorder in the South, asking the listeners for sympathy and understanding.
Depending on the time, the context, and the interpreter, the performance of pathology could point in many different directions. The conception of "racial diseases" has provided physicians, patients, and performers ample, ever-changing material for debating race relations in America. From tuberculosis to venereal disease to meningitis to AIDS, the ways in which diseases are defined, characterized, and dramatized provide a window on social relations and social values.
The lyrics of the "Memphis Minnie-jitis Blues" created a drama around a prevalent early-twentieth-century malady, a disorder that affected African Americans in the Mid-South disproportionately. But Douglas's stage performance reflects much about how society had changed since the days of Cartwright's "dyaesthesia Aethiopis." As Douglas sang of her pain on stage, her words portrayed the travail of a woman desperately seeking help from her Lord, from her doctor, and from her companion. In Douglas's time, the blues personalized the obscure, anonymous crises of southern African Americans, attracting ever-wider audiences. Through the blues one woman's experience took shape, gained authenticity and power, and attracted sympathy. Memphis Minnie's was a new voice from Algiers, Louisiana, traveling up through the Mississippi Delta to Memphis, on its way to Chicago. Through the new musical genre, the possibility emerged that African Americans might gain increased understanding for the pain they suffered. Like the blues, Douglas gained visibility and renown on Memphis's Beale Street, and from there her songs of the plight of southern blacks radiated outward via railway, radio, and record player to distant listeners in St. Louis, Chicago, New York, Cleveland, and beyond.
Some 120 years after the rise and fall of "dyaesthesia Aethiopis" and some forty years after the "Memphis Minnie-jitis Blues" had receded from the spotlight, another obscure and painful disorder named "sickle cell anemia" would emerge to exemplify the African American condition. This "new malady" highlighted yet again—but in another political register—painful, hidden, racial experiences. In the turbulent decades of the 1960s and 1970s, and, indeed, through the close of the century, sickle cell anemia—an inherited malady characterized by many symptoms, including repetitive painful "crises"—seemed to embody the problem of unrecognized pain in the African American community. At the same time, it continued to draw attention to the existence of fundamental biological differences between blacks and whites. The interpretation and meaning of sickle cell disease became a potent public issue. The disorder would follow a very different path from its predecessor "race diseases."
The history and transformation of sickle cell disease—from early-twentieth-century invisibility to intense late-twentieth-century politicization—is the subject of this book. This historical study draws attention to the forces that brought the disease to public light, the nature of its dramatization, its evolving symbolism, and the consequences of its high profile as an authentic "black disease." The history of sickle cell disease is presented here as a window on medicine, race, and American society. The story is a narrative of individuals whose ailments were invisible before 1900. Only gradually—in the period from 1910 through the 1930s and 1940s (when Memphis Minnie herself began singing the "Minnie-jitis Blues")—did their ordeal achieve a measure of clinical visibility and scientific significance. In the 1950s came social prominence for "sicklers" (a common colloquial term for sickle cell patients), followed in the 1970s by striking political importance.
The following pages examine the slow process by which invisible suffering has been made visible. Set in Memphis, the story examines how this once-invisible disorder acquired an identity and symbolic significance, and how the malady became a key part of African American identity and a kind of political and cultural currency. The study explores not only the history of the pathology itself, but also the relationship between disease, African American identity, medicine, and American society.
How did sickle cells and the pain associated with the disease acquire this magnitude in the late twentieth century? The disease's transformation resulted from a complex, historically significant reinterpretation of specific signs and symptoms. The transformation reveals changes in the meaning of racial experience, as well as changes in medicine as an economic and political system. Viewing the historical evolution of sickle cell anemia, we witness a series of shifts in which clinicians and scientists, patients and communities, politicians and movie actors, and society at large came to reinterpret and give fresh meanings to pain, blood cells, and disease experience. These various players saw the disease from different viewpoints, connecting the vital symptoms with their own particular scientific, clinical, social, and political agendas. In combination, they shaped an awareness of this single disorder, and through the disease they also informed broader understandings of disease experience, chronic illness, and disease politics in America.
Conventional histories of disease tend to follow only the professional scientists and physicians who, it is assumed, played key roles in shaping the lives of the infirm. Thus the traditional narrative for sickle cell disease dwells on the search for scientific understanding, beginning in 1910 when Chicago physician James Bryan Herrick first reported "peculiar elongated and sickle-shaped red blood corpuscles" in one of his patients—a young African American dentistry student from the West Indies (see illustrations). On the basis of this finding, Herrick speculated that the young man was afflicted with a new disease that had never before been seen in the world. Soon afterward other clinicians noted its prevalence among black Americans and speculated that people of African descent were the preferred victims of this mysterious ailment that was characterized by leg ulcers, recurrent joint and abdominal pains, and the telltale sickle blood cells. But just as a river's course is influenced by many factors—topography, climate, and human constructions—so too the history of the infirm has been guided by many factors. For people with sickle cell disease, three issues—scientific medicine in friction with race relations and health care politics—have been key factors in their lives throughout the twentieth century.
To date, most conventional histories have focused on scientific medicine and features of the disease itself and not on the patient's changing experience of the disease. Thus for decades Herrick's clinical recognition of the malady stood as a crucial discovery, for it symbolized the power of Western medicine's laboratory orientation that brought microscopic analysis to bear on clinical problems, making the invisible now visible. But in the 1970s and 1980s, an era shaped by increasing awareness of the patient's perspective as well as of African American culture and identity, some scholars began to weave new discovery narratives—acknowledging, for example, that long before Herrick's "discovery," African cultures must have been aware of sickle cell disease. One Ghanaian-born medical researcher, Felix Konotey-Ahulu, recalled that "unlearned men and women of my own tribe could give accurate descriptions of the symptomatology." Indeed, he noted, well-established tribal names for the disorder revealed a persistent historical concern not with sickled cells per se, but for the intense, agonizing, chronic pain of the disease. In Africa, disease names reflected concern for the illness as experienced. "The Ga Chwechweechwe, the Fante Nwiiwii, the Ewe Nuiduidui, the Akan Ahotutuo all reflect the onomatopoeia of the repetitive gnawing pains characteristic of sickle cell crisis," wrote Konotey-Ahulu, and this contrasted with Western biomedicine's fascination with cellular morphology.
In the 1970s and 1980s, as attention turned to the patients' experience and to medicine as a cultural force, once-simple questions of discovery, naming, and disease definition became more complex.[7 The questions of who "discovered" sickle cell anemia and how it was named reflected, in microcosm, deeper problems of race relations and cultural difference. They pointed to key divergences between black and white Americans in historical experience. Such issues of how the disease discourse has reflected social relations—from the era of James Herrick through the time of Konotey-Ahulu—are key themes in this book's narrative.
Historians speak of 1949 as another important year in the modern scientific understanding and naming of sickle cell anemia. In that year, physical chemist Linus Pauling suggested that the sickling phenomenon of red blood cells occurred because of a flaw in the molecular composition of the hemoglobin (the oxygen-carrying component of the blood) inside the cells. Sickle cell anemia became, in the parlance of molecular biology, a "molecular disease." Indeed, because of the foundational status of Pauling's research for the emergent discipline of molecular biology, sickle cell anemia was quickly labeled the "first" molecular disease. A subtle error at one point in the vast molecular structure of hemoglobin, it was said, caused the molecules to cluster together, bending the red blood cells they inhabited and thereby creating sickle-shaped corpuscles. It was assumed that the joint and abdominal pains and the variety of clinical problems known as sickle cell disease could be traced back to the subtle molecular error. For scientists such as Pauling, who came to see the disorder through the lens of molecular analysis, the disease became significant in the 1950s and 1960s not because of the pain of its sufferers, but because it served as a case in point of the extraordinary relevance of molecular biology to post-World War II medicine. In the decades after Pauling's work, sickle cell disease was distinguished as the first disorder in which it could be argued that the clinical problems stemmed from a single amino acid mis-substitution on hemoglobin. Molecular biologists comprised a young discipline constructing their legitimacy. By proposing a specifically "molecular" name for the disorder, Pauling's insight closely linked the fate of the then-obscure disease to the vaunting ambitions and ideals of molecular medicine.
This generation of molecular biologists, in conjunction with medical geneticists, shone a spotlight on sickle cell disease, in turn raising many new questions—about the inheritance of this hemoglobinopathy in black people, about its evolution through centuries in Africa, and about whether the disease's continued prevalence among black people was assisted, paradoxically, by its value in fighting malaria on the African continent. People with sickle cell disease became case studies for emerging questions in fields such as evolutionary biology, population genetics, and physical anthropology. In each of these fields, the model disease became rapidly more visible and noteworthy, a test case for establishing the plausibility of novel theories of biological inheritance, adaptation, and evolutionary change. One new theory suggested, for example, that the sickle cell trait began as a beneficial evolutionary protection against malaria. People with the trait (known in the language of biology as "heterozygotes" and in popular parlance as "carriers") showed no sign of ill health. Indeed, the argument went, they were well adapted to survive in malarial surroundings. But when this beneficial trait was passed to children from both parents in a "double dose" (one "dose" from each carrier parent), the result was sickle cell anemia, the often-fatal childhood disease. Considered over many generations, the ecological balancing act between malaria, sickle cell trait, and sickle cell disease defined what biologists called a "balanced polymorphism." As such theories emerged in the 1950s and 1960s, the lives of sicklers became more relevant to professional scientific discourse and more widely discussed.
The lives of sicklers as portrayed in these theories also became germane to moral concerns in American society. Had American blacks inherited a "good" gene or a "bad" gene from their forebears in malaria-prone West and Central Africa? Or was sickle cell trait only a "bad" gene when removed from the indigenous context that made it beneficial? Such discussions rendered African American character problematic in the specialized, coded language of science. Would the causative gene and the disease disappear with migration, with intermarriage of Africans among other peoples over time, or with a change in context? Could this disease discussion be applied to debates about the inheritance of other controversial "traits" in American blacks (such as intelligence)? How might the evolutionary understanding of the disease be translated into reproductive policy or the prevention of new sicklers from being born in America?
In the 1950s and 1960s public and professional discourse bound the lives of people with sickle cell disease and their parents to controversial issues ranging from the black diaspora to assimilation to population control. With their increasing visibility in evolutionary biology and clinical medicine, persons with sickle cell disease became more central than ever to Americans' understanding of the complexities of disease experience, to Americans' growing appreciation of the power of scientific medicine, and to sweeping debates over the nature of African American identity.
It was at this moment in the 1960s that the history of sickle cell disease also intersected with the national politics of race, inequality, and health care in America. If discovery and new scientific theories were important in the disease's trajectory, then health care politics—in its local, regional, and national manifestations—became a third crucial force shaping the lives of sicklers. In the late 1960s and early 1970s, as sickle cell anemia was caught up in the torrent of U.S. congressional and presidential politics, the malady became widely characterized as a "neglected disease," a disease of a people whose "pain and suffering" had been ignored for too long, and a disease finally achieving its moment of national recognition. As part of the struggle of black Americans for equal rights and justice, the typical disease experience (repetitive painful episodes) fit neatly with the politics of consciousness-raising. To invoke the pain and suffering of the sickle cell patient was to dramatize the long-ignored social condition of black Americans and to give impetus to social activism. The malady propelled reform in health care and society. For white Americans, embracing the disease and acknowledging the legitimate pain of its sufferers could be an act of symbolic redemption. In the wake of legislative debates about a national health insurance plan, and amidst cuts in biomedical research funding, even Republican president Richard Nixon was compelled to acknowledge the "neglected disease," signing into law the Democratic Congress's Sickle Cell Anemia Control Act in May 1972.
With this legislation came federal funds for medical research, community clinics, and genetic counseling programs. But with national attention also came controversy. As legislation gave recognition to the disorder—splashing its name across television, in newspapers, and through popular media—the intense visibility also nurtured fear, misunderstanding, and resentment. Cautious observers feared that widespread talk of eradicating the "hereditary disease" and the practice of counseling carriers not to have children fostered stigma and discrimination. Enthusiasts, however, promoted mandatory testing for sickle cell trait as an effective method of disease prevention, hoping that the knowledge of their status would lead carriers to make informed reproductive choices about whether to bring a child with sickle cell disease into the world. At the same time, some people resented the "special attention" this disease had gained over other equally prevalent and similarly tragic disorders. Others simply resented the fact that political pressure from African Americans and liberal politicians had influenced the direction of National Institutes of Health (NIH) research dollars.
Indeed, state and national legislation stirred up many fresh controversies. Some states embraced mandatory screening of African American schoolchildren without parental consent. In the name of military preparedness, the U.S. Air Force restricted personnel with sickle cell trait from flying, based on a much-debated theory that their red blood cells would sickle at high altitude and they would descend into painful crisis. To many African Americans, these instances of employment restrictions, coercive testing, and directive counseling about reproduction seemed little more than heavy-handed social control and discrimination. By the mid-1970s, national legislation and increased disease visibility had inspired several backlashes, including defenses of reproductive rights and parental consent and objections to directive genetic counseling.
Sicklers had traveled a long and tortuous road, emerging from clinical and social obscurity to become, in turn, patients with a model "molecular disease," evolutionarily interesting people, part of a powerful social and political cause, and people whose disorder reflected increasingly widespread controversies in the application of genetics to public health. Their disease's clinical, scientific, and political transformation in the twentieth century paralleled the ways in which other hereditary diseases (such as cystic fibrosis and Tay-Sachs disease) emerged from obscurity into prominence, embraced by scientists and by ethnic groups and politicized by patients' advocates and health care activists at century's end. The case of sickle cell disease foreshadowed the rising power of patient advocacy in the 1980s and 1990s (as with AIDS and breast cancer) in shaping biomedical research agendas and popular attitudes about illness and identity.
In writing the history of diseases, scholars often follow these singular currents—clinical discovery, scientific theorizing, and political transformation—as if they were separate events, without attention to how these streams flow together. As we shall see, the disease's twentieth-century transformation can be more fully appreciated if we understand it as a commodity whose value for patients' rights advocates, molecular biologists, and clinical specialists increased rapidly as the economy of biomedical science itself changed and as the politics of illness experience shifted. To call attention to disease as "commodity" is merely to emphasize its place in a network of exchange relationships, where—much like any object—the disease concept and the illness experience acquired value and could leverage resources, money, or social concessions. Sickle cell disease's trajectory as a commodity reveals, in microcosm, the general trajectory of American health care and medical research in the twentieth century. This way of viewing the history of disease will draw our attention to the ways in which disease discourse meshed with other political and economic developments in health care, including the rise of national institutions like the NIH, the appearance of genetic counseling, the emergence of disease activism, the growing cultural power of illness, the advent of managed care, and the changing political economy of health care in America.
Disease and the Politics of Place
On one level, this study chronicles a national transformation. In every city where sicklers have lived, national trends in politics and biomedicine aided the increasing clinical visibility of their illness. Another national trend—the decline of acute diseases that often masked the very existence of sickle cell disease—also contributed to the rising prominence of the malady. In the 1950s, for example, the disease's rising profile in hospitals across the nation was materially aided by the use of new antibiotics to treat acute infectious disease. To be sure, in large part national clinical visibility drove the malady's social visibility. At the same time, however, the nationwide struggle over racial segregation and civil rights also drove its social visibility, as did the expansion of federally funded biomedical research. Certainly by the 1970s, 1980s, and 1990s it was national activism that made the story of sickle cell anemia a poignant one on televisions and in newspapers across America.
Yet the national history of sickle cell anemia can obscure as much as it illuminates about individual and local experiences. The disease manifests itself in children in their infancy, where it causes its highest mortality. But the experience of the illness varies greatly from one person to the next. In some, pain and infection are overwhelming and recurrent, and in others such symptoms are barely discernible. The illness has always gained significance first as individual bodily experience, and then in the context of families and local communities. As medical anthropologist Arthur Kleinman has noted, "Local cultural orientations . . . organize our conventional common sense about how to understand and treat illness." For most of this century, sickle cell anemia would have been experienced by its sufferers as mysterious, recurrent episodes of severe pain coursing through the abdomen, joints, or bones. Proneness to infection would have stalked many of these sufferers throughout their lives. Children might earn the label of "sickly" and would require constant family care. Many would die early of infectious disease, their deaths attributed to whatever malady prevailed in the community—whether tuberculosis, pneumonia, typhoid, diphtheria, or something else. Rarely recognized as a discrete ailment and never uniform in its effects, sickle cell anemia would not have been perceived by that name. So a child in the early twentieth century might grow to adulthood learning to live with painful episodes and bouts of infection, relying on whatever system of diagnosis or of home or clinical therapy best answered the family's needs. In some places, depending on local diagnostic custom, the ailment might earn the name "spells" or "rheumatism." But for most people who experienced it, the malady would remain nameless and indistinct and yet impossible to ignore. Records of mortality among its sufferers, especially by midcentury, would be scattered widely throughout medical and public health inventories as cases of pneumonia, tuberculosis, rheumatism, or some other ailment, lost amidst the local toll of infant death and infectious diseases.
As we move to the local level, then, the story of disease becomes necessarily more varied, gaining in cultural and geographic complexity. In what follows, we examine the full picture of the disease through the lens of one southern city—Memphis, Tennessee. In this city on the Mississippi River—known for economic and racial conservatism, cotton-oriented business culture, Beale Street blues, fundamentalist religious leanings, and, perhaps surprisingly, one of the nation's first sickle cell anemia clinics—one begins to see the ways in which local values defined the visibility and political significance of the disease long before it became nationally significant. At times civic culture in this "capital city of the Delta" stymied clinical discovery, social recognition, and scientific awareness. But at other times this culture magnified recognition and visibility—indeed, at some historical junctures Memphis could even be portrayed as the exemplary city with a special understanding of the disease. It is only with attention to local culture and the local meanings of disease that we can fully appreciate why sickle cell anemia became a socially meaningful disorder, and how it eventually infiltrated our national politics.
Located in the southwest corner of Tennessee near some of the poorest rural counties of Mississippi and Arkansas, the city of Memphis—self-styled as "America's Distribution Center"—has become a distinctive crossroads metropolis in the heart of the South. It is a city marked by a checkered heritage—the birthplace of the blues and a center of music tourism along fabled Beale Street, the home of Elvis Presley's Graceland mansion and of St. Jude Hospital (a national landmark in the fight against childhood cancer), as well as the site of Martin Luther King Jr.'s assassination in 1968. The city has come to see itself as an amalgam of characteristically southern urban traits, where close proximity to rural culture bred innovative cultural expression and also fomented vicious racial tensions, where the influences of the rural Delta still mix uncomfortably with cosmopolitan ideals. In the words of a recent historical profile, "Memphis stood where cultures, rich and poor, black and white, urban and rural, did not so much converge as collide." The story of sickle cell anemia in Memphis reveals the impact of this collision on local health attitudes.
Throughout much of the nineteenth and twentieth centuries, Memphis's citizens often blamed the city's poor health record on the constant stream of "indigent outsiders" from the surrounding rural countryside. But try as they might to keep disease at arm's length and to distinguish their own metropolitan health standards from the city's rural surroundings, Memphians drew their identity from those very surroundings. Cotton commerce along the Mississippi River built Memphis, yet the city regarded the influx of people who worked the cotton fields as bad for the civic image, bad for business, and bad for health. The same fact of location that made Memphis a prosperous cotton marketplace thus made it a reluctant center for regional health care; this ambivalence was a key feature of health politics throughout the early and mid-twentieth century.
By the post-World War II decades, however, the city's economy, its relationship to indigent outsiders, and its dependence upon cotton had been thoroughly transformed. Something akin to an inversion of economic values had begun to occur. Cotton was now associated with a single-minded agricultural backwardness and with the region's failure to diversify. Illness, by contrast, once a regional burden, had become a significant economic boon—a new source of income, a commodity in a growing service sector. By the 1950s, in Memphis and other American cities, health care was becoming a booming industry in itself. Post-World War II federal legislation promoting hospital construction and medical research, as well as the passage of Medicare and Medicaid in the mid-1960s, further enhanced the income in city hospitals and transformed the city's view of indigent care. Service to the region's poor could now be used to attract growing amounts of federal health care and research dollars. Private health insurance enrollment had also skyrocketed in the 1950s, further boosting local health care consumption. Such economic developments may seem tangential to the story of sickle cell anemia, yet it is precisely in these postwar years that the malady gained a new measure of local visibility. The question thus emerges, how did local economic transformations underwrite the rising visibility of the disease?
Viewed in this local aspect, the story of disease transformation involves people, institutions, and forces often hidden from the national spotlight. The history of sickle cell anemia involves not only physicians like James Herrick, scientists like Linus Pauling, and national politicians like Richard Nixon, but also mayors and congressmen, countless patients, and local philanthropists. In Memphis local lay healers, from mystical conjure doctors to urban midwives, were as much a part of the disease's history as university researchers, newspaper writers, and ministers. These same people would later become part of the national movement that included television and movie actors, athletes, federal bureaucrats, and scientists. But decades before the national politicization of sickle cell disease, this local economy with its diverse systems of knowledge and belief shaped a particular recognition of the distinctive pain and suffering of the disorder. Through the local lens, we begin to discern how and why individuals and small communities took an interest in this disease, and how their efforts influenced its trajectory on the national stage.
By looking closely at Memphis, we also discern the fine grain of human relationships and the ways in which the worlds of science, medicine, urban politics, race relations, and health belief conjoin in twentieth-century America. Investigating this local dimension of disease requires, of course, sensitivity to society and politics in the South, particularly to the significance of African Americans in the history of the region. It also requires attention to the complex histories of medicine, biomedical research, and public health. In addition, any study of African American pain and suffering in the South must be informed by the history of blues music, the history of regional labor, and the economic history of the region. Accordingly, this study uses a wide range of sources—local newspaper accounts of health crises and controversies, regional musical lyrics, sermons, imaginative fiction, cartoons and popular images, the papers of local congressmen and mayors, the writings of other local Memphians, and the professional writings of the city's physicians and scientists. It also analyzes state and federal government records, including presidential papers, as well as reports from national scientific journals, mainstream media, and medical journals. This range of sources helps us to visualize the history of African American experience and the cultural history of an important disease in America.
Studies of other diseases could yield, and have yielded, similar insights. The history of syphilis, especially in the notorious U.S. Public Health Service (USPHS) study of untreated syphilis in Macon County, Alabama, from 1932 to 1972 (known as the "Tuskegee Syphilis Experiment") has long served as an important reference point—perhaps even an archetype—for understanding region, race, and health care. Such studies of black health in the region have tended to focus on themes such as the history of neglect, the prevalence of racial stereotyping in medicine and public health, the isolation of poor southern blacks and their health conditions from mainstream influences, and the abuses of the segregation system. As James Jones's history of the USPHS study shows, the research project fed into potent regional stereotypes about African American sexual behavior. The perception of syphilis as typical and widespread among southern blacks, and of Macon County's black population as hopelessly ignorant and carefree, played an important role in the USPHS's decision to observe the disease's progress in black men while withholding treatment. The infamous forty-year study was also nurtured in the isolation of rural Alabama, and it was prolonged by the desire of researchers to gather data, despite the deterioration of the bodies of these syphilitic black men and the difficulty of keeping them in ignorance of their condition even after effective therapies became available.
This study of sickle cell disease in Memphis examines similar themes: the driving force of medical research agendas, the potency of racial stereotypes, and the power of social circumstances to dictate patterns of diagnosis and treatment. But different themes also emerge. Black life in Memphis was quite different from life in Macon County, Alabama. Nor was sickle cell disease in the early twentieth century anything like syphilis in its cultural symbolism, in its apparent prevalence, or in its clinical, social, or moral aspects. The history of sickle cell anemia as it unfolded in Memphis was not exclusively a tale of neglect and victimization, and so this is not a story of research scandal. But like the story of "bad blood" in Macon County, the sickle cell story is a narrative of the invisibility of pain and of the long struggle for recognition and political power. It examines the devaluation of black people in the American health care system, but it also explores how, why, and under what circumstances the system has granted visibility and assigned value to the ailments of black people. Unlike the high profile, sexually explosive image of black syphilis, sickle cell anemia offers a portrait of a slowly emerging, chronic experience whose gradual emergence revealed the features of a new society.
The Cultural Meaning of Disease
Assessing the "value" of health and sickness has involved a complex calculus in the South—and therefore the region's history provides an important backdrop for any study of black health. The southern agricultural economy has always relied upon the wellness of black men, women, and children as healthy laborers—the backbone of the region's agricultural prosperity through slavery. Emancipation brought a shift in this calculus. Freedom from slavery offered unprecedented opportunities for former slaves, but as historian Eric Foner and others have noted, it also brought a crisis of health. The high incidence of tuberculosis, cholera, venereal disease, and other epidemic diseases among newly freed people seemed to suggest that emancipation and mobility were double-edged developments. Public health experts predicted the eventual demise of American blacks, unshackled from the supposedly benevolent protection of southern masters, compelled to inhabit squalid shantytowns, and forced to compete in a laissez-faire world for their own food and clothing. Discussions of "racial health" in the late nineteenth century were inseparable from postemancipation politics, particularly since southern apologists saw rising mortality rates as an indictment of emancipation and of the federal Reconstruction agenda. Disease among black people, these apologists insisted, was a sad commentary on the slow demise of the freed slave in America. But all agreed that the health of black Americans entered a period of instability and crisis with the death of the slave system.
At the same time that Herrick noted the possible existence of a new sickled cell disease, discussions of racial disease differences continued to reflect these lingering cultural anxieties. To southern physician Thomas Murrell, for example, syphilis sent a compelling political message to northerners. "If Negro health is a political menace," he wrote in 1910 in the Journal of the American Medical Association, "then the diseased one is doubly a social menace, and the invasion of the South by the North forty years ago has brought about an invasion of the North, and that by the man they freed." Although the predicted postemancipation extinction of black Americans had not occurred, analysts such as Murrell continued to interpret disease statistics as if they told a moral tale about emancipation, about the flight of African Americans from rural plantations, and about the dangers awaiting them in urban America. Disease patterns revealed the face of changing social relations and economic arrangements, and in this context, disease discourse carried moral weight, warning Americans about the fallout from migration, urbanization, and the rise of the northern ghetto.
Such debates about black health were inevitably intertwined with political debates about race relations in the South and in America. White southerners, now fearful of losing black labor in the exodus known as the "Great Migration," continued to champion the benefits of the plantation system for the mental, physical, and even spiritual well-being of African Americans. Some, like Murrell, believed that the demise of planter paternalism would only bring an increase in pain and suffering. For others, however, the "backward," rural, and "peasant-like" customs of southern black people—in an age embracing germ theory and the "new public health"—were to blame for black-white health disparities. There were also those who insisted that economic deprivation among black people—dating back to slavery—was responsible for the high rates of death and disease. But for many it was enough simply to state in blanket fashion, as did one southern public health official, that "tuberculosis . . . is today almost a synonym for the word 'Negro.'" Everyone was aware of the ways that factors such as "human nature," diet, morality, innate biology, historical deprivation, or poverty could be invoked as causes of disease, and of how these explanations might serve political ends.
Thus the southern discourse on black health—as well as white health—was linked to regional historical sensibilities, to deeply ingrained notions of white paternalism, and to the question of labor in an agricultural economy. Healthy African American people meant hardy workers, which in turn augured well for economic prosperity. As historian Ulrich Phillips observed in 1915, slave ownership brought with it the responsibility to provide food, shelter, and clothing, and the slave "might also be given medical attention in time of need and perhaps some occasional reward as an incentive. All this was required for the sake of the master's prosperity, if from no other consideration." Though willing to cause pain and suffering in order to punish, subdue, or coerce their human property, plantation owners were often concerned that disease be treated promptly, especially when illness (whether "real" or "feigned") intruded upon the slave's ability to work the crop and thereby bring prosperity to the land, the landlord, and the region.
This moral economy of pain and suffering on the plantation was extinguished for some black southerners as they migrated toward northern and southern cities after freedom. But the paternalistic plantation system remained unaltered for many who continued to work the cotton, tobacco, rice, and sugarcane fields. In the 1880s one Mississippi sheriff could opine that planters wanted "to see cotton grow too well to let Mr. Nigger suffer." As historian James Cobb has noted, "Complain as they might about the fines and medical bills they had to pay for their tenants, few planters appeared to let the economic costs of supporting and retaining labor cut into their profits." Well after slavery had ended, plantation owners' paternalistic interests still dominated regional health concerns wherever traditional plantation labor relations thrived.
By the early decades of the twentieth century, planter paternalism was no longer the primary force influencing black health. A new municipal economy distinct from that of the rural hinterlands began to emerge with the "rise of a new, segregated, urban geography" of cities like Memphis. The federal government's freedmen's hospitals intruded, if briefly, into the traditional southern system, elevating the health of emancipated slaves to a national concern. In addition, by the 1890s small medical schools and hospitals organized by entrepreneurial black southerners had sprung up throughout the region. Simultaneously, the "laboratory revolution in medicine" promised to reshape both individual and public health in the cities. Thus, when Miles Vandahurst Lynk's medical college for black physicians opened just outside Memphis in the 1890s, he envisioned the school as a distant relative of Booker T. Washington's uplifting, self-sufficient, and race-proud Tuskegee Institute. In cities like Memphis, black and white religious congregations pooled funds to build their own hospitals, thereby promoting physical as well as spiritual well-being. Philanthropic organizations supported ventures such as Nashville's Meharry Medical College at an unprecedented rate. Health had become a more complex social and cultural issue, a different kind of concern than it had been on the plantation. Certainly health was still an economic and labor issue for planters, but it was also part of greater public goals of uplift, moral advancement, and urban reform.
Health care, accordingly, became an increasingly significant municipal concern, and a modern (if rudimentary) health care "system" began to emerge. A department of public health was formed in Memphis in the face of the yellow fever epidemics of the 1870s and 1880s; it fell out of use in the 1890s, only to be reconstituted in the early twentieth century in the wake of typhoid epidemics. The city constructed sewer systems and occasionally launched health campaigns (for pure milk and against tuberculosis, for example), but even so, mortality rates increased. By 1910 the city offered an even larger variety of health services, among them a large municipal hospital providing charity care to the poor, a number of modestly equipped hospitals built by Baptist and Methodist congregations, new pharmacies, and a small public health infrastructure struggling to be something more than an office of political patronage. Still, death from infectious disease remained ever present and the burial business thrived. The existence of even this small amount of public health activity in Memphis represented a regional novelty that stood out in sharp relief against the absence of such work in the surrounding rural counties.
In the southern city, the illness as well as the health of black people would become valued in new—and sometimes perverse—ways. Consider, for example, the world of medical education, where "disease" had always held a peculiar appeal to teachers and researchers. In 1924 the University of Tennessee pursued an affiliation with Memphis's ever-expanding municipal hospital in order to gain access to sick patients for educational purposes. The agreement between the school and the municipality reflected much about the new urban economy, for here the dense accumulation of the poor and the diseased actually constituted a net economic gain for teachers and students. The school's dean saw affiliation with the charity hospital as a "golden opportunity for the university. The almost limitless wealth of clinical material afforded by the General Hospital . . . brought [students] into intimate contact with practically all the diseases that they will be called upon to treat." In this urban confluence of teaching with charity health care, sick bodies were valuable educational commodities. The dean's comments were an index of economic and medical change in the city, signaling how the academy itself was expanding and altering ideas about the value of disease. Over the next four decades, the school and the municipal hospital would become the centerpiece of Memphis's growing health care system, constantly introducing new and unconventional notions about disease into civic discourse. Later, as the growth of clinical research added even more "value" to sickness, this new health care system would become one of the most important forces defining disease and black health in the city. The tensions that arose between the declining plantation complex and its way of placing value on health, on the one hand, and this emerging health care/research enterprise and its values, on the other, are central conflicts in the story of sickle cell disease in the urban South.
The transformation of the meaning of disease thus reflected the convergence of many factors—the expansion of medical education, the growth of biomedical research, and the embrace of disease as a worthy social cause by government and social groups. Indeed, the commodification of health and illness is one of the most important and understudied developments in twentieth-century society. Where early-twentieth-century public health promoters spoke of health as a "purchasable commodity," we now see this style of thinking as only one part of a larger commodification of illness and disease in this century. Marx, of course, highlighted such processes of commodification as key aspects of capitalist development. Anthropologists and historians have extended Marx's insights to any number of developments, although rarely have they examined commodification in the realm of health and disease. For their part, historians of consumer culture have explored the processes by which "commodities appear in virtually every space twentieth-century American culture affords," but, again, only occasionally have such scholars touched upon health and disease as new commodities. In using "commodification" in the context of medical history, I mean to draw attention to the processes by which bodily experiences such as pain are assigned value (monetary and otherwise) by physicians, patients, insurance companies, and others. "Commodification" also turns our attention to the ways in which ambiguous collections of experiences are named, take on conceptual coherence, and are subsumed under the title "disease," in such a way that they can be called upon by professionals, laypersons, and politicians in bargaining for rights, power, status, or economic position. It is this profound transformation in disease—from the early twentieth century through the age of AIDS—that the story of sickle cell disease chronicles.
Finally, this transformation gives us insight into the rise of chronic disease in the twentieth century. Acute infectious childhood diseases declined sharply in significance, and as populations aged, chronic diseases rose gradually in importance. Writing in 1940, physician Ernst Boas could observe that "we escape the invasions of microorganisms to succumb at a more advanced age to diseases obscure in origin and chronic in character." Sickle cell anemia stood amidst this spectrum of "obscure" diseases that became more visible in the wake of the decline of infectious disease. By the time of sickle cell disease's emergence in the post-World War II years, the very notion of "disease" had taken on many new connotations, becoming not only a burden but a long-term lived experience and a new kind of economic boon for hospitals and growing research-oriented medical complexes. The story of sickle cell anemia in the Mid-South is not, therefore, merely an isolated narrative of race and health in one region. It is fundamentally a story of the changing meaning of health and disease in America.
The city of Memphis offers particular insight into these transformations. Its civic culture evolved as a tense compromise between urban ideals and rural traditions. The hot, moist climate of the low-lying West Tennessee region reached an extreme in Memphis, distinguishing the city from its home state in climate and in culture and wedding it more intimately to the climate, culture, life, and economy of the Mississippi Delta. As James H. Robinson noted in the 1920s, "Memphis bears a relationship to the eastern part of Arkansas, the western and northern parts of Mississippi, as well as to West Tennessee, that is more vital and immediate . . . than its relation to East and Middle Tennessee."
According to H. L. Mencken, Memphis was—and arguably still is—a "rural-minded city," its economic, cultural, and political concerns dominated by migrants from the vast Mississippi River region, the Delta, and the "Black Belt" of Alabama, Mississippi, Louisiana, and Arkansas. In the words of a regional author, Memphis was the "metropolis of the Delta . . . its financial, social, and cultural capital." Yet the city also strove to distance itself from the rural cultures from which it grew. If Mississippi in the early twentieth century was a rural "closed society," then Memphis was one of the few doorways opening from the Deep South onto a metropolitan world. Rural influences continued to filter into the city in many forms, however. They were visible in the efforts of the regional Ku Klux Klan (and later the white Citizens' Council) to control city hall, in the performance of the Delta blues on Beale Street, in the practice of "conjure doctors" and lay midwives in the city, and in the influx of thousands of refugees who sought relief whenever the Mississippi River flooded. As their city expanded in the early twentieth century, Memphians knew that their enclave could, in the blink of an eye, be reclaimed by the surrounding elements. Chief among those defining rural elements was the traffic in cotton, for everyone in the city knew that the cotton market defined the city's priorities, its prosperity, and its identity. As Clarence Poe wrote in 1904, "When cotton prices drop, every man feels the blow."
Any Memphian in the early twentieth century would also know that the city was run by Edward "Boss" Crump, a Mississippi native with strong ties to cotton and to the insurance business. Crump was an enigma in the region, a Democratic Party boss who blended southern paternalism and humor with brutality toward those who disagreed with him. The juxtaposition of rural and urban cultures gave rise to a particular kind of politics, which helps us to understand the delicate political compromises that surrounded black health.
The blues was an integral part of that distinctive Memphis politics; indeed, in its aesthetics and its lyrics, the blues evokes much about this civic culture, its politics of compromise, and the prevailing paternalism. As novelist Richard Wright once noted, "The blues could be called the spirituals of the city," the songs of a people "whose life has been caught up in and brutalized by the inflexible logic of modern industrial existence." The musical form, while part of a new urban, African American economy on Beale Street, also reflected a political paradox. A popular music born in the Delta region and thriving in the city, the blues celebrated the difficulties and vagaries of African American life throughout the region. Memphian W. C. Handy's 1909 song "Memphis Blues" gave rise to the urban art form. As Memphis writer George W. Lee described it, the song's style and composition "carried the same backward over-and-over wailing that characterized the sorrow songs of those people farthest down . . . though with a slightly different arrangement." Handy's music combined elements of field work songs with an urban message suggesting, at least on its surface, that black people found true freedom and frankness of expression in the city. African Americans rallied around Handy when he sang, "Mr. Crump won't 'low no easy riders here. / I don't care what Mr. Crump don't 'low, / I'm gonna bar'-house anyhow." The lyrics suggested a certain disdain for Crump's rules, and the existence of freedoms that were unknown on the plantation. But these were limited freedoms. In fact, "Memphis Blues" also carried the title "Mr. Crump," for Handy had composed it for the mayoral campaign of E. H. Crump himself. Men from the crowds around Handy were soon ushered by Crump's supporters to the polls, where their poll taxes were paid and where they might receive other rewards in exchange for voting for Crump (or, in later years, for his preferred candidate). To a large extent, this was the style of black voting in Memphis throughout the first half of the century. The freedom that Handy sang about served Boss Crump, architect of a political machine that would rule the city from the 1920s through the late 1940s. Such cultural negotiations in the birth of the "Memphis Blues" foreshadowed the ways in which African Americans were compelled to negotiate—for a voice, for freedom, for political power, and for health—in the city of the blues.
Chapters 1 and 2 of this study provide portraits of disease and health in Boss Crump's Memphis. They examine the conceptual framework that Memphians used in thinking about health care and provide insight into the invisibility of sickle cell anemia and its gradual emergence as a social force in the 1940s and 1950s. In this setting, one lone white Memphis pathologist named Lemuel Diggs took an unusual interest in the obscure sickle cell disease, seeking to promote its wider awareness, but he had little success. In time, the expansion of urban, segregated institutions like Diggs's University of Tennessee Medical Center fostered a new interest in such odd maladies. In exploring these years of invisibility, Chapters 1 and 2 examine the ways in which Memphis—with its diverse ideas about race, region, and health—maintained a rural-mindedness while also separating itself gradually from plantation culture. It is against this backdrop that we must understand local problems such as infant mortality or the local meanings of the painful crises of black children with sickle cell disease.
Chapters 3 and 4 explore the unraveling of the health care system that had taken shape in the early twentieth century. The World War II era had a transforming effect, ushering in the medical and research-based economy of the 1940s and 1950s and a new faith in science and medicine that transcended regionalism and set the stage for civic health activism in Memphis and other American cities. The new health politics brought chronic childhood diseases like leukemia and sickle cell anemia into the public spotlight for the first time, and for some Memphians these diseases became symbolic of the city's maturation. As Diggs proclaimed after the creation of the St. Jude Research Hospital for leukemia-stricken children, "There is no reason to think that all of the superior mental chromosomes of the country are localized in Boston, New York, and Baltimore . . . and that no scientific good can come from Memphis."
The aftermath of World War II brought challenges for Jim Crow, and the struggles over segregation in schools and hospitals heightened local awareness of sickle cell disease. One beneficiary of these trends was Diggs, who emerged as a leading researcher on the obscure disease that was itself rising in importance. The social visibility of doctor, disease, research, and community activism led to the creation of one of the nation's first sickle cell clinics in 1958, signaling that the city had indeed undergone an important transformation since 1910. The new health politics in Memphis revealed a brief flirtation with liberalism, and Chapters 3 and 4 explore the ways in which sickle cell anemia's civic prominence reflected both the political coalition between liberal whites and blacks that appeared with the demise of the Crump political order and the workings of the booming research and health care economy of the 1950s that changed discussions about health. The national crisis over integration and segregation would soon fragment this liberal coalition, but by then sickle cell disease had already achieved visibility and legitimacy.
Chapter 5 examines the ways in which the black protest movement would seize upon this now-visible disease as a symbol of the hardships endured by the black community. The disease became much more than a rallying point for polite local civic groups. It was remade into a national—and even an international—symbol of pain, social suffering, social inequality, and even the forceful uprooting of African Americans and the black diaspora. In this atmosphere, the pain and suffering of sickle cell anemia victims became nationally politicized, used by many black Americans—from college sororities to women's auxiliaries to the Black Panther Party—to raise consciousness about their long-ignored social condition and their civil right to health equality. The disease gained ever-wider renown among scholars and social policymakers. It became a centerpiece of new research programs in molecular biology, and evolutionary biologists began to link sickle cell anemia to the history of African people and to malaria. In short, the disease had become a cultural commodity—a crucial force in the pursuit of social equality and justice, a vital reference point in debates about African inheritance and identity, and an expression of the patient-centered activism that was reshaping American medicine.
In the aftermath of this new era in health care and racial politics the disease's political visibility reached a peak, and it became a foil for many competing political agendas, both in Memphis and in America. The personal testimony of victims gave drama and vitality to the malady as a lived experience, as a series of painful trials to be weathered day by day. At the same time, the disease became integrated into militant liberal as well as conservative political campaigns. Chapter 6 explores how the disease became a crucial part of national health care politics and of the southern politics of racial realignment. In 1971 and 1972 the malady became one of Washington's three or four most important health care and research concerns, moving into the political spotlight alongside Nixon's "War on Cancer&qu ot; and the Tuskegee syphilis scandal. Speaking on sickle cell disease, President Nixon told Americans, "We cannot change the history of neglect, but we can do much to alleviate the pain and suffering." Sickle cell anemia also became a double-edged political tool for the Nixon administration and for Memphis's Republican congressman—and strong Nixon supporter—Dan Kuykendall. Fighting for reelection in a district with a growing black population, the congressman saw the disease as a means of "reaching out" to now-enfranchised African Americans while also emphasizing the dangers of drug addiction and using the prominence of sickle cell anemia in his region as a vehicle for ensuring that federal dollars would continue to flow to his city. It is not surprising that Memphis's African American communities saw the disease quite differently and used it to pursue their own political ends.
Chapter 7 explores the therapeutic promises that came out of this political activity, as well as a disturbing new portrait of the disease that has emerged since the 1970s. The health care politics surrounding the disease in the 1990s differed starkly from that of the early 1970s. In that earlier era, mainstream Americans accepted the authenticity of pain and suffering and embraced a complex agenda for its prevention, care, and alleviation. By contrast, in the 1990s the authenticity of the very experience came into question in the clinic and in society. Some people insisted that pain relief in sickle cell anemia rewards "drug-seeking" and came to see sicklers as a variant of the inner city drug addict stereotype. In an era of cost cutting, others began to scrutinize the high costs of the liberal protocols for disease and pain alleviation. Debates over the morality and economics of pain management in sickle cell anemia took on new significance with the national expansion of managed care, anxieties about health care costs, and fears about inner city pathology. If this disease became a symbol of increasing compassion and awareness of black health in America in the 1970s, then Chapter 7 examines what its subsequent displacement from the celebrity spotlight reveals about civic activism, race relations, and consciousness-raising in the 1990s. What does the recent history of celebrated and hyped "cures" tell us about the alleviation of African American pain and suffering or the promise of molecular medicine? What does the rise of managed care and free market medicine portend for the visibility of sickle cell disease and for race and health policy?
Although this book examines a wide range of black health concerns in the nineteenth and twentieth centuries, sickle cell anemia, with its early invisibility, changing symbolism, and rising clinical, social, and political prominence, provides the central thematic thread. The question of clinical and scientific visibility prompts an examination of one kind of social/conceptual issue: the ways in which a disease could gain meaning for medical practitioners and scientific disciplines, its changing meaning from generation to generation, and its gaining or losing utility as a model in clinical and scientific discourses. As suggested earlier, questions of clinical and scientific visibility have always been linked to economic, intellectual, and professional goals. Social visibility speaks to another kind of issue: the ways in which people experiencing illness have been labeled by physicians and scientists, and how they and others have folded their plight into larger social causes. Social visibility also highlights how these groups themselves, especially in recent decades of patient activism, have embraced their "disease" label publicly, proudly, and with a measure of political defiance. In dramatizing their appeal for recognition, they have taken on new forms of identity that can intersect with a larger body politic. These questions of disease visibility point us toward the wide range of processes by which illness, syndromes, disease, poor health, and symptoms like pain have become the site of negotiations about power, governance, justice, and social order.
Excerpted from Dying in the City of the Blues by Keith Wailoo. Copyright © 2001 by The University of North Carolina Press. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
|Introduction: Pain and Suffering in Memphis||1|
|1||Conjurors of Health in the New South||25|
|2||Race Pathologies, Apparent and Unseen||55|
|3||Remaking Jim Crow Medicine||84|
|4||The Commodification of Black Health||107|
|5||Sickled Cells, Black Identity, and the Limits of Liberalism||137|
|6||Promising Therapy: Government Medicine on Beale Street||165|
|7||Pain and Policy at the Crossroads of Managed Care||197|
|Conclusion: Race against Disease||225|