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Excerpt from the Introduction
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.[1] 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.[2]

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.[3] 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).[4] 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.[5] 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."[6] 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.