State Of Suffering

Dying in the City of the Blues:

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.