|
Stigma,
Race, and Disease in 20th Century America: An
Historical Overview
Keith Wailoo,
Ph.D.
Professor
Department
of History
Institute
for Health, Health Care Policy, and Aging Research
Rutgers, the
State University of New Jersey
New
Brunswick, New Jersey
http://www.stigmaconference.nih.gov/FinalWailooPaper.htm
The topic of
the history of stigma, race, and disease is, of course, an
expansive one – even if one confines the discussion to the 20th
century United States. In my own field of the history and
sociology of medicine, the starting point for any such
discussion of stigma must be Erving Goffman’s classic 1963 book,
Stigma: Notes on the Management of Spoiled Identity.[i][1]
In the work,
Goffman sought to analyze three types of stigma. The first he
called stigma deriving from physical deformities (and we might
add to, physical infirmity). Second, he suggested that stigma
was often associated with perceived “blemishes of individual
character” which could include anything from “mental disorder”
and “homosexuality” to “radical political behavior.” Third,
Goffman designated “the tribal stigma of race, nation, and
religion” which are “transmitted through lineages” and possessed
equally in all members of a family.[ii][2]
Thus, group membership and group identity could be (in
themselves) significant sources of stigma.
In all three
kinds of stigma, Goffman wrote, “an individual who might have
been received easily in ordinary social intercourse possesses a
trait that can obtrude itself upon attention and turn those of
us whom he meets away from him… He possesses a stigma, an
undesired differentness from what we had anticipated…” This
image of “undesired differentness,” could and often did have
extensive negative implications for the person to identified.
Because of our assumption of this person’s lower status, noted
Goffman, we “exercise varieties of discrimination, through which
we effectively, if often unthinkingly, reduce his life chances…
We construct a stigma-theory, an ideology to explain his
inferiority and account for the danger he represents… We use
specific terms… and we tend to impute a wide range of
imperfections on the basis of the original one…”[iii][3]
Goffman’s work in 1963 was one among many that began to open the
eyes of social scientists to this complex social process of
stigma and discrimination. It was a process, of course, that
was quite clearly visible to any Americans familiar with then
current debates about racial segregation in the South, voting
rights, and civil rights. Goffman’s writings on stigma seemed
particularly relevant in the 1960s and into the 1970s and
subsequent decades as American society confronted other
challenges – women’s rights, gay and lesbian rights, the rights
of the mentally ill. As Goffman knew well, the process by which
identities became “spoiled” was relevant not only to questions
of social discrimination and social relations, but also to
questions of public health and health care.
The following pages build upon Goffman’s basic observations,
turn our attention to questions of race, disease, and health.
My essay offers a brief analysis of the historical process by
which stigma has become associated with particular disorders,
and of the process by which these associations have been
loosened. More specifically, if focuses on the case of people
of African descent in the United States, in order to explore the
problem of “double stigmatization” (tribal stigma and stigma
stemming from disease or deformity) particular impact of race
relations in stigma formation. I will focus on particular
disorders and on the dissemination of images of disease and
group identity, in order to arrive at some basic lessons about
the interplay of stigma and race and disease in American
society.
Any
discussion of stigma and disease in particular groups must
begin, of course, with a discussion of the group and group
identity. Only 12 years before Goffman’s writings, in 1951 an
historian of health care in the South published a book entitled
“Health of Slaves on Southern Plantations.”[iv][4]
The picture inset of the book presented an image, a kind of
stereotype of race and nineteenth century health care.
It was an
image of the forces defining the identity of all Americans, and
of African Americans. The picture was that of a modest home in
the country, with views of the surrounding landscape. On the
viewers left at the front door of the home, one saw the
physician leaving his horse and buggy approaching the house.
Beneath the doctor, one saw images of the particular tools of
his trade – calomel (mercury compound widely used in allopathic
medicine). His was the world of complex chemical derivatives
used in therapy. And more important, as suggested by the
surrounding landscape at the front of the house, the doctor’s
world was the world of cleared land, limited vegetation, and
sunlight. At the back
door, one saw the other world of health care, symbolized by the
black woman on foot. Beneath her were images representing her
practices and beliefs – chicken’s head, frog and snake parts,
and roots and herbs of undetermined varieties. Looking at the
surrounding terrain at the back of the home, the viewer would
see a world of dense vegetation, of darkness and shadows, and of
nefarious, barely discernible figures in the background dancing
mystically around fire. Such images highlight the features
associated in the popular mind with African-American group
identity, a characteristic “transmitted through lineages” and
presumably shared by all members of the group – a stereotype
that often came into play when issues of stigma and physical
maladies emerged.
How did
particular diseases inform these images of group identity, and
contribute to the creation of stigma? Each disease in each time
would tell its own story.
In this
paper I focus on only a few disorders in order to illustrate
this interaction of disease, race, and stigma. Let us first
consider hookworm in the early 20th century (a
disorder prevalent in the American South, and a disease
designated as the ‘germ of laziness’ because of the anemia and
lethargy associated with hookworm infection); and a disease
that, some believed, has special relation to the American
Negro. Tuberculosis, a major cause of mortality and morbidity
in nineteenth and early twentieth century America, (and still
today in the developing world), and one among several infectious
diseases for which one southern physician could write in 1932,
that in “the safeguarding of the health of the Negro… [was not
a] fight… against disease, but against physical, mental, and
moral inferiority, against ignorance and superstition, against
poverty and filth.”[v][5]
In many of such diseases, as I have noted elsewhere, one image
dominated – it was the image of “the carriers” (a portrait of a
social menace whose collective ‘superstitions, ignorance, and
carefree demeanor stood as a stubborn affront to modern notions
of hygiene and advancing scientific understanding… [a people
best understood as] … a disease vector…”
We see this image clearly
exemplified in an image in a 1914 Atlanta Constitution
newspaper, republished recently in Tera Hunter’s history of
black women in the South.[vi][6]
In the context of an economy where black people worked as cooks,
gardeners, domestic servants, and caregivers in white homes,
this image of the black woman as “disease vector” highlighted a
particularly prevalent, pervasive, and long-lasting anxiety (one
that, I should say, continues to exist in contemporary global
health discussions today).
The
black woman is pictured flying alongside the mosquitoes, the
flies, and other “disease vectors” in a cloud of dust, leaving
her filthy habitat that waves the flag of “contagious disease.”
She evades many different kinds of public health surveillance,
flying directly over the barriers that have been erected by
modern medical sciences to protect this “average white home.”
The barricades of “sanitary precaution,” “screen,” “pure water,”
“garbage cans,” and “good sewage,” are not enough to protect the
denizens of the home. In the context where bacteriology was
only a few decades old and being widely disseminated in popular
consciousness, and in a context where “Typhoid Mary,” the
“asymptomatic carrier,” had become a household name, such images
resonated with popular thinking, and fears of these “human
disease vectors” seemed to be strongly rooted in the best
scientific evidence of the time. The legitimacy of new
scientific concepts such as “disease carriers” was becoming well
established in public health and bacteriology, fields which were
unquestionably the ascendant sciences of the time (akin to the
rising status of genetics today). Thus, one important feature
of stigma in public health was associated with both scientific
and social ideas about ‘the carrier’ of disease.
The image of
the black (and also ethnic or immigrant) person as disease
vector was constantly reinforced by the writings of scientific
authorities.[vii][7]
In his 1911 article on Hookworm “in its relation to the negro,”
for example, pioneering hookworm researcher Charles Wardell
Stiles noted that the incidence of the disease ‘possibly
indicates that the negro has brought [it] with him from Africa
and because of his soil pollution has spread it broadcast
through the south, thereby killing thousands and causing serious
disease among tens of thousands of others. Whether this line of
thought be considered justified of not,’ Stiles continued, ‘we
must frankly face the fact that the negro… because of his
unsanitary habit of polluting the soil… is a menace to others.’[viii][8]
Here was the expansion that Goffman had commented upon – that
is, the expansion of the vector notion to define and stigmatize
Negro character itself.
Such images of disease are not uniform.
Other
Other
maladies presented a very different public face – highlighting
very different features of race and region in America.
Cancer in the 1920s, 30s, and 40s, was a widely feared disorder
(widely perceived as a death sentence and it was a disease which
few sufferers or families would speak about publicly or
privately.
1926,
“Danger Signals of Cancer” 1927,
“Cancer: A Woman’s Problem”
But there
are several interesting contrast between images of hookworm and
tuberculosis, on one hand, and cancer, on the other. First,
cancer was widely portrayed as a disease of well-to-do women and
social leaders (as these images suggested). It was widely
characterized as a “disease of civilization” and a disease
originating in refined living and lifestyles; the disease was
unknown, experts said, among so-called savage and primitive
cultures. Second, the popular and professional literature of
the time worked aggressively to undo the association of cancer
and death, by filling the silence.
1938, “I’m
Not Afraid of Cancer” 1942, “You Can Tell the
Doctor”
The
message one encounters in the early 20th century
media was one preaching courage instead of fear, encouraging
early action, and promoting watchful attention (particularly to
audiences of middle-class white women) to “the danger signals
of” the disease, and open discussion with the doctor – albeit in
the shadows. These images were part of broader, concerted,
efforts orchestrated by the American Society for the Control of
Cancer, the predecessor of the American Cancer Society, to raise
cancer awareness. And these images of hope were embraced by
physicians, and by many of the women to whom the message was
directed. As cancer became an even more widely discussed
disease in the 1950s, the understanding of the individual’s
disease experience became gradually more developed. The story
is a complex one, but for the purposes of this essay it is
necessary to say only that the cancer patient became widely
portrayed as a complex individual within, generally speaking,
high-class social groups, inspiring hope, reflecting the battle
against fear.
There are many analogies and dysanalogies, but the main point
I’d like to make here is that disease (even diseases widely
regarded as “shameful” as cancer was) need not necessarily
reinforce individual or group stigma. Indeed, even though
cancer was regarded by some as a familial disease, and therefore
evidence of familial “taint,” a reader of popular or
professional journals of the time rarely encounters images of
cancer patients carrying within them hidden dangers as they
moved about in society.
As Goffman
wrote, assumptions about stigmatized identity often informed
broader discriminatory social policies. Consider, for example,
this image from the World War II era – a cartoon illustrating
the American Red Cross’s practice of racial segregation of blood
plasma. The war had spurred numerous technical innovations –
from the scaled-up production of penicillin to the use of blood
plasma transfusions on the front. At home, the changing social
relations of the war had drawn women and ethnic minorities into
new roles in wartime industries, and called for all Americans to
sacrifice at home for the effort abroad. The war against Nazism
and Aryan racial ideology had also led to broad scrutiny of
racial ideologies and assumptions about blood, stigma, and group
identity at home.
In this
context, some critics began to look closely at the ways in which
“spoiled identities” were in fact created and manufactured, and
at the sweeping impact of racial ideologies in American
society. In 1942, a cartoon appeared which can be read as one
of many commentaries on this process of stigma formation.
Entitled “An American Tragedy,” the cartoon appeared in a New
York City African-American newspaper and sought to put aside
narrow conceptions of race while promoting a focus on the larger
group – the nation – as the unifying whole. The first caption
shows a white soldier crawling up to a ARC attendant who tells
him, “you might as well wait here, bud – we ain’t got nothin’
but negro blood left.” The second captions portrays the dilemma
of science – the scientist scratches his head because the labels
have fallen off the bottles (negro blood and white blood).
“What a dilemma, he says, now how can we tell the white from the
negro plasma?”
The
third caption shows the white soldiers (and note that the images
suggest that this system of blood segregation works against the
white soldiers, not the black soldiers) commenting on the
situation – “looks like the colored lads is the only ones that’s
got round trip tickets to the horspital today…” “guess they
only got colored blood.”)
In the final
caption, a wounded, seemingly patriotic and heroic, black
soldier is pictured lying on a hospital bed looking up to his
white physician. “If I need a transfusion,” he says, “gimme
anybody’s blood, so long as I get back to the front.”
Such images from popular culture can be seen as efforts to look
closely at the workings of stigma in society – how assumptions
about group inferiority (and the unseen and dangerous entities
hidden in “negro blood”) were played out in terms of public
health policy.
The post
WWII decades would witness a dramatic transformation in disease
itself in America. For one, there was a growing focus on
increasing morbidity from polio, increasing mortality from
cancer as a disease of aging, and the rise of previously obscure
diseases now made visible by new diagnostic tools and by the
decline of older acute infectious diseases.
Polio, it seemed, defined
many of the conventional associations of race, pollution, filth,
and disease. In Memphis, Tennessee, for example, one public
health official noted that although the incidence of polio in
post war America has reached unprecedented levels, “the negro
attack rate has been consistently lower than for whites…” and
theorized that “negroes living in less favorable sanitary
surroundings and in more overcrowded houses acquire the disease
at an earlier age [when it manifests] as a subclinical infection
that is not recognized…” and that is mild in its effects.
Thus, in this theory, filth acted as its own preventive agent.
Additionally, in the 1950s the rising mortality rates from
cancer and its differentiation into several diseases would begin
to open yet other lines of race characterization and stigma,
prompting further revisions of truisms from the past.
According to a 1950
Congressional Report, for example, non-whites were not – as
commonly believed – immune from cancer. Rather, new evidence
suggested that while skin cancer and breast cancer were indeed
more prevalent among whites, other cancerous disorders such as
cervical cancer appeared to be quite prevalent among non-white
Americans. Indeed, the African-American women of the South
seemed to have a particularly high incidence of cervical
cancer.
And so, i
f the story of polio was undermining previous patterns of
racial stereotyping, the rising incidence and social profile of
cervical cancer in the 1950s would lead to new generalizations
about racial identity, disease, and group behavior. New truisms
would emerge and flourish in the 1960s. Writing in the early
1960s, for example, one British researcher linked the rise of
cervical cancer among black women to individual choices and
sexual behaviors. “The different incidence of carcinoma of the
cervix in Negroes… could be explained,” Lewis stated, “by
differences (first) in the age of first coitus, (second) the age
of marriage, and (third) by the frequency of coitus with
uncircumcised partners.”
Thus, as
polio challenged the stigma associated with group identity and
disease, cervical cancer opened new lines of thinking about
group identity and disease. Stigma operated differently in each
disease realm and in different groups. As Lewis continued, “the
higher rate of carcinoma of the cervix is found in those women
who first have coitus at an early age, who marry early and
remarry frequently and whose men are uncircumcised.” So,
although there was (in the 1950s and 1960s) increasingly
openness about the cancer experience, and increasing hope about
surviving cancer,
there was
also increasing scrutiny of the morality and behavioral choices
that individuals of particular groups had made, and of the ways
in which these choices brought the burden of disease directly
upon themselves.
New social
trends in the 1960s, however, were changing the dynamics of
stigma formation once again. In 1963,
Goffman noted that “the members of a particular stigma category
will have a tendency to come together into small social groups
whose members all derive from the category.”[ix][9]
He could not foresee at the time that, in these groups, the
“blemishes of individual character” and “tribal stigmas of
lineage” could themselves become symbols of pride, resistance,
and even engender social movements of the marginal versus the
mainstream. In the 1960s and 1970s, a variety of patients’
groups (the elderly battling for Medicare legislation, terminal
patients battling for hospice care, women, and the
institutionalized mentally ill, to name only a few) gained
stronger voices. Their “unique” perspectives now stemmed, these
groups often insisted, precisely from the very stigmatized
experiences or identities that had been deemed problematic.
The story of
disease and activism in the 1960s and 1970s is far too complex
and multi-faceted to rehearse again here. The social changes of
the era, however, radically transformed the social significance
of disease; and these social changes also altered the
relationship of stigma to issues of health and race. Consider,
for example, the final example of the story of sickle cell
anemia in 1960s and 1970s American society.
It was in
the context on these decades of racial tension over civil rights
in America that sickle cell anemia gained national political
significance as a disease symbolized by “recurrent pain and
suffering” of African-Americans, a disease that had long been
ignored by mainstream America, and was finally getting (like
black Americans generally) the “attention it deserved.”[x][10]
One can see clearly in the discourse of the era the ways in
which the disease experience was being put to new social and
political uses in the 1970s. Where some might see the disease
as a taint or stigmatizing mark, others now portrayed the malady
as a particularly poignant symbol of the African-American
experience. In the context of the 1960s and 1970s, such a
disease experience (and particularly the recurrent painful
episodes or “crises”) became a positive symbol of an entire
group experience with the health care system, with biomedical
research, and with mainstream society itself. Additionally, new
movies and television programs could be made to portray the
experience of the disorder, as an example of a larger group
experience.[xi][11]
This high
profile, however, also fed into a new kind of stigma generated
by the increasing attention and the public health response to
sickle cell disease. In national hearings before the U.S. House
and Senate, for example, elected officials debated the question
of testing for sickle cell trait and counseling “carriers.”
These carriers of hereditary defect represented a new type of
concern in America, and the question before politicians and
society was how carriers of defective genetic material and
hidden taints should be counseled on matters of reproduction.
Should they be encouraged not to have children? Should they
simply be warned about the chances of producing diseased
offspring? While some states debated mandatory heterozygote
testing of particular populations, some experts (such Nobel
Prize laureate Linus Pauling, who had himself been associated
with discovering the molecular basis of sickling) helped to feed
controversy about testing carriers by suggesting in the pages of
the UCLA Law Review, somewhat bizarrely: “I have suggested that
there should be tatooed on the forehead of every young person a
symbol showing possession of the sickle-cell gene or whatever
similar gene… If this were done, two young people carrying the
same seriously defective gene in single dose would recognize
this situation at first sight, and would refrain from falling in
love with one another.”[xii][12]
New forms of stigma emerged, then, in the very attempts of
scientists, public health officials, and politicians to address
the problem of suffering and disease in the African-American
community – for these discussions about monitoring and
counseling and stigmatizing ‘the carrier’ seemed to conflict
with attempts to undermine group stigma in society.
These were complex and controversial years indeed, for in the
early 1970s many issues seemed to revolve around the health care
and group stigma in African-Americans. The year 1972 alone saw
the first national revelations about the “Tuskegee Study” of
untreated syphilis in African-American men in Macon County,
Alabama, as well as the passage of national sickle cell
legislation, and also lingering controversies about the
assertions of William Shockley and Arthur Jensen assertions
about IQ and racial inferiority. With increasing attention to
sickle cell trait ‘carriers’ came new practices – the U.S. Air
Force decision to ban carriers from high altitude missions, and
E.I. DuPont company’s purported practice of using the sickle
cell trait as a screening and selecting test to fit employees to
job (on the assumption that ‘carrier’ status made them
susceptible to ill health under adverse circumstances).
What general conclusions on the history of race, disease, and
stigma in America might be warranted from such a cursory
overview of a handful of diseases – from hookworm and
tuberculosis, to polio, cancer, and sickle cell disease?
First, I’ve
attempted to sketch (using these few examples) a picture of the
complex ways in which stigma “works” in society – and the ways
in which the social context, the particular diseases, the
politics of group identity, and the sciences themselves (from
bacteriology in the early 20th century to genetics at
the end of the century), feed into the process of stigmatizing
individuals – doing so by designating hidden invisible taints,
and thereby reinforcing broader prejudices and policies.
Secondly, this overview suggests a particular research agenda.
If part of the goal of this gathering of scholars is to identify
areas for further research, I would suggest increasing attention
to the historical and sociological processes by which
stigmatized categories are formed and deconstructed. This would
be a useful undertaking in the effort to understand stigma and
global health today in America and in the developing world.
|
