Sickle Cell Anemia and the Politics of Race and Health
By Keith Wailoo
University of North Carolina Press,
325 pp., $34.95 ($16.95, paper)
For every era, there are characteristic diseases that attract public attention, and in every disease there are particular features that gain cultural currency and achieve high levels of popular visibility because they embody social concerns, cultural anxieties, and political realities."
Obvious case in point: AIDS in the '80s. Earlier case in point and of vital concern to African Americans: sickle cell anemia in the '70s. But as Keith Wailoo (author of the above quote) explains in his important new study, Dying in the City of the Blues, sickle cell's nationwide visibility beginning some 30 years ago had a visibility some 70 years ago on the streets of Memphis and on one street in particular: Beale.
When Lizzie Douglas (aka Memphis Minnie) sang "Memphis Minnie-jitis Blues," was she singing not of meningitis but of sickle cell's symptoms? And "the blues" itself -- the "low down shakin' chill" of Robert Johnson's "Crossroads Blues," a chill born of a malaria-prone river valley, transferred to a city itself a geographic, commercial, and cultural crossroads -- was it not an emblem of one of sickle cell's target populations and that "invisible" population's predicament: Delta blacks and their quite real but "invisible" pain?
Wailoo, an award-winning professor of social medicine and history at the University of North Carolina, doesn't overdo the possible link with the blues, but he does establish the undeniable links between sickle cell anemia and three issues of key meaning to modern Memphis history: "scientific medicine in friction with race relations and health care politics." All three in local terms were to become by the '70s, in national terms, what Wailoo calls "a complex cultural negotiation" between what science shows, society dictates, and leaders legislate. Read what you will into that academic buzzword "negotiation"; Wailoo's demonstration of disease as "commodity," as "politics," and as "narrative" are his book's triple features. General readers need not beware; Memphis readers, read the record:
By the 1920s, in a town H.L. Mencken once described as a "rural-minded city" (and Wailoo adds, "arguably still is"), Memphis was receiving a steady influx of rural blacks at a time when the paternalistic "plantation complex" of the South was in its last stages. And by 1926, the local VA hospital was reporting its first case of sickle cell anemia, a disease in some African languages referred to as a "state of suffering" and, in the VA report, a disease diagnosed independent of the more common conclusion, malaria. Three years later, Dr. Lemuel W. Diggs, with a "distinctly new, laboratory perception of disease" taught to him at Johns Hopkins, was brought to UT-Memphis. The medical school as a teaching institution was suffering; Memphis blacks, many of them indigent and many of them complaining of repeated infections, joint and abdominal pains, and general lethargy, were suffering too -- from Jim Crow and the substandard health care that went with it. The opening of the city's General Hospital and UT's affiliation with that hospital helped answer the needs of both: The school got a concentrated pool of patients; African Americans got at least a semblance of professional care to compare (unfavorably) with that of whites.
In the '30s, however, what the author terms "new habits of clinical surveillance" and New Deal activism (in the form of New Deal dollars) raised not only the status of UT nationally but the visibility of "sicklers" locally, and with it a highly "circumscribed" visibility for blacks -- as patients obviously and as nurses conceivably, as UT-trained doctors never. Under the political machine of Edward "Boss" Crump, the health care for blacks improved too but as an aspect of Democratic Party patronage, until a report by the U.S. Public Health Service listed Memphis as having the highest infant death rate in America. Civic action immediately kicked in: in the form of John Gaston's bequest to build a new city hospital; in the form of postwar fund-raising efforts among whites and blacks to build Le Bonheur Children's Hospital; in the form of private donations by philanthropists such as Herbert Herff and Abe Plough to advance the ground-breaking research conducted by Diggs and Dr. Alfred Kraus at UT; and, beginning in the late '50s, in the form of St. Jude Children's Research Hospital, whose mission statement explicitly forbade any and all racial considerations.
Where did this leave sickle cell the disease? On a molecular level, thanks to Linus Pauling's discoveries, and on a "commodity" level, thanks to federal dollars. Patients were growing in "immanent" value, the "legitimizers" of research agendas. But by the '60s advances in scientific understanding and advances in Memphis' international reputation as a center for sickle cell research meant also new views of the disease, with different lessons for different observers. Wailoo calls it the "politicization of disease" to describe Congressman Dan Kuykendall's successful fight to win research dollars (and black votes) in response to his district's redrawn boundaries and "changing complexion," and he quotes from others the "ethnic disease politics" to describe the '70s upswing in new theories of black identity generally, new theories of sickle cell biology specifically. But with the recent rise of managed health care and the recent advent of expensive gene therapies, a free market caused a shift away from academic health centers and away from sickle cell as well, a disease that afflicts and kills far fewer than, say, hypertension.
For Memphis, the city at the crossroads of Southern culture that had managed to make medicine central to its economy, Medicaid-turned-TennCare meant consignment to the state's medical-economics margin. The big bucks were now in Nashville, courtesy of one of that city's leading cash generators, Columbia/Hospital Corporation of America. A loss to Memphis, then, and a loss to the attention paid the city in the closing pages of Dying in the City of the Blues.
But for a serious loss for readers, consider this: the absence altogether of case histories to go with Wailoo's account of sickle cell science and policy, of names, faces, individuals to go with what is in every other respect an admirable sociology of medicine. We read of doctors, lawmakers, concerned citizens, film stars, sports stars. We read of agendas, protocols. We read of "racial identities" and "strategies of accommodation," "explanatory models" and "disease landscapes," "forces." We read of blood smear techniques and recombinant DNA techniques, of hydroxyurea therapy. What we hear nothing from are the sufferers themselves, excepting perhaps the lone lyrics of Memphis Minnie.
Wailoo ends his book on a literary high note, borrowing from Ralph Ellison and that writer's Invisible Man. Unfortunate to think in this one book especially, given Keith Wailoo's otherwise thorough work, of sicklers invisible here.