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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

 

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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).

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  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.

 

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  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.