Typhoid Mary

by Judith Walzer Leavitt

  Identification and Labels

  The medical tests that led to the possibility of identifying healthy carriers of typhoid fever at the turn of the twentieth century developed in advance of public health policy about how to handle healthy people who could transmit disease. The bacteriological assays that detected salmonella typhi in the blood, urine, and feces of people recovered from their sickness led quickly to discovering the bacteria in people who thought they had never suffered from the disease at all, and to an understanding of the role such people played in perpetuating the disease. The healthy carrier concept initially contradicted the public’s understanding of pathophysiology The new category of healthy people who could be tested and labeled as dangerous to their families and friends was as exciting to physicians and scientists as it was perplexing to an incredulous lay population.

  George Soper understood the concept, accepted it, and was determined to carry it into public actions. His initial interactions with Mary Mallon indicated how far his perceptions were from those of the public at large. “I was as diplomatic as possible,” Soper explained, “but I had to say I suspected her of making people sick and that I wanted specimens of her urine, feces and blood.”3 He expected Mallon to cooperate with a close inspection of her body’s fluids and discharges because she would understand the dangers she posed: “It must have looked as though it [typhoid fever] was pursuing her,” Soper concluded. “Possibly she had even thought that she had produced the epidemics.”4 But this was not how Mary Mallon or those around her saw it. The disease did not pursue her; instead it looked as if a misguided and obsessive George Soper was himself irrationally in pursuit. This was new, a healthy person identified as a dangerous person; it was baffling and frightening to be so labeled and pursued, especially given the imbalance of power between Mallon and the health officials. Soper’s desire to identify and test a healthy woman, which seemed to him a benign request, did not appear so innocent to the woman he approached.

  Ethicist and philosopher Timothy Murphy explains the same phenomenon of denial and incredulity in those gay men first identified as transmitters of AIDS (then called GRID, Gay-Related Infectious Disease) in the early 1980s. Identification itself, with a new category and new conception of disease, seemed threatening. In looking at Randy Shilts’s book, And the Band Played On, an early account of the epidemic, Murphy criticizes Shilts for not being sufficiently sensitive to the full meaning of identification. He sees Shilts as stacking the “narrative cards” against Gaetan Dugas, the Canadian “patient zero,” by portraying him as a “one-dimensional scoundrel in a gothic novel, an occasion for lamentation about the evils of (gay) men.” Instead, Murphy suggests, “Dugas’s incredulity about the communicability of his condition—who had ever known cancer could be contagious?”—should have been sympathetically understood in terms of how hard it was at the time “to believe that medicine could produce new categories of disease.”5 To have expected Dugas, or any other early sufferer of AIDS, to understand immediately the ramifications of the disease that wracked his body or how his sexual behavior might be implicated and need to be changed was to ask too much. Judgment about initial responses must take into account, Murphy believes, the full social context in which they occur. What seem to be dissenting voices may merely be uncomprehending ones. How one tells the story affects how it is understood.

  The big unknown, for Mary Mallon, Gaetan Dugas, and other first targets of new medical and public health conceptualizations, is what follows from the identification. The power to identify is intimately linked to the power to control. Mary Mallon, a single Irish immigrant woman at the turn of the century, already knew herself to be vulnerable and to rank low in the American social hierarchy. In her perception, the system was not on her side, but instead protected the native-born upper classes. Whether or not she was aware of people like Alphonse Cotils, male breadwinner healthy carriers who were not isolated following their identification, she clearly understood her social marginality and how her status contributed to her being scapegoated and blamed. Gaetan Dugas, too, as a gay man, understood his precarious position in the predominant heterosexual mainstream.

  Obviously, identification as “dangerous to the public health,” especially when added to existent social vulnerability, is a label to avoid. Mary Mallon’s identification as a dangerous carrier brought with it police action, forcible hospitalization, and isolation. As in the example of AIDS, where the immediate identification of the disease with homosexual men narrowed official thinking about how to address the epidemic, the identification of Mallon came before health officials had time to think through the wider implications of such an identification.

  Identification is not simply a benign act to promote medical understanding. It carries powerful social meaning and radically alters the world of the individuals, especially the first ones, to be so labeled. Before naming individuals as menaces to the public health, we must understand the full ramifications of such designations.6

  When a medical identification is accompanied by a social label or equated with a specific social group, the results are especially complex and problematic. Labels too often become caricatures, and, like cartoons, are simplistic and one-dimensional. Mary Mallon’s experience provides a stark example of how the stigmatization of people who suffer from or carry diseases can adversely affect ensuing events and actually make disease control more difficult. Mallon perceived herself as the brunt of cruel and unusual punishment when she was identified and carted off to her isolation. A working-class single immigrant woman, she felt defenseless against the powerful forces massed against her. Her position of having been “banished like a leper,” in her words, was further compounded with the dehumanizing stigma of Typhoid Mary. She knew that city bacteriologist William Park would not appreciate the label “Typhoid William Park”; she understood the shame that society attached to the epithet and to her. In an effort to protect herself from the attacks aimed personally at her, she closed her mind against the health officials who put her on North Brother Island and refused to listen to them. She fought them, and the ideas they represented, vigorously.

  “Typhoid Mary” originally was simple description. Rosenau used the phrase, no doubt, merely as a way to refer to a woman whose real name had not been released. But the convenience and vivid imagery of Typhoid Mary captured public imagination and allowed for easy public reference to a complex health concept. Once the phrase was in the public sphere, it was arguably in the interest of the health department and in the public’s interest to allow, and even to encourage, the spread of the image of Typhoid Mary in the hope that its negativity might discourage other carriers from cooking and spreading disease. But the cost to Mary Mallon herself was incalculable. It took away her individuality, her personhood, her self: it replaced her person with a symbol. In the public’s mind, Mary Mallon ceased to exist, even when her body continued to inhabit the world.

  If protection of the public health is our aim, we must move in the direction of diminishing the use of labels that stigmatize and separate. “Stigma and discrimination are the enemies of public health,” reminds Jonathan Mann, Director of the International AIDS Center. We can learn from Mary Mallon how such identification, especially if carried out within a public health program that is not perceived to be fair and equitable, will only escalate the problems of disease control and make matters worse. We have already experienced the singling out and stigmatizing of HIV-infected gay men, minorities, and immigrants; many Americans today hold these groups responsible for the spread of AIDS and label them promiscuous and immoral. We must instead try to avoid the creation of an “AIDS Mary,” or an “Ebola Mary,” demonizing labels, and learn from the Mallon example that stigma can actually work against protecting the public’s health.7

  Mallon’s words bear repeating: “I lived a decent, upright life under the name of Mary Mallon until I was seized . . . locked up in a pest-house and rechristened ‘Typhoid Mary.’ ” The transformation imposed on her made her believe there were
“two kinds of justice in America,” and it embittered her. Her initial treatment at the hands of the health officials itself fueled her resistance.8 Mallon’s story reminds us that when people who are infected are treated as if they are polluted and deviant because a virus or bacterium is attached to them, they are forced to defend themselves and resist public health restraints. On the other hand, if people who are infected are treated with respect and empathy for their personal stories, it should be possible to foster cooperation with public health measures and help stem dangerous epidemic crises.

  Isolation

  In thinking about how far the government might take disease control actions today, isolation emerges as one of the most comprehensive, and to many, most frightening, possibilities. Some states have considered quarantining people with AIDS, and others have actually placed in isolation individuals who violate orders to refrain from unprotected sexual encounters. As Ramon Perez, an attorney with the California Department of Health Services, commented when his department began developing explicit policy to allow for such isolation, “For anyone with any civil libertarian inklings, the kind of power that health authorities could exercise is horrifying. . . . We have to balance the right to privacy against the right of the public to be protected.” Isolation of people with AIDS, Perez realized, “could continue [for an indefinite period] until a person died.”9

  The seriousness of the dilemma today is well illustrated in an exchange between Stephen C. Joseph, New York City’s health commissioner from 1986 through 1989, and Sandor Katz, a New York-based writer and AIDS activist. In a New York Times Op Ed article, Joseph articulated two general objectives of public health work: “the care of the sick and the protection of the uninfected.” He understood that these sometimes come into conflict—“especially . . . in the city of Typhoid Mary”—and when they do, he thought that “concern for the individual liberties of those currently infected must take second place to the protection of the uninfected and the larger community.” He understood public health authority to allow forcible isolation for those people whose actions make them “a clear and present danger to the health of others,” and he concluded: “The issue, then, is not whether quarantine is a legitimate tool for protecting the public health. The issue is: Under what circumstances should it be employed, and with what safeguards against its abuse?” Joseph thought the best groups to decide such policy terms would be “a combination of professional expertise, mayoral leadership and court oversight.”10

  Sandor Katz responded in a lengthy article in The Nation worrying that unless civil liberties could be guaranteed, the sick would be driven underground and problems would escalate. Katz believed testing, identification, labeling, and possible isolation were all efforts at “social control in the name of public health.” He continued, “Given the stigma of AIDS and the vulnerability of the groups hardest hit by it so far—gay men, drug addicts and their partners and children—there is an ever-present danger that public health officials will trample on civil liberties in their zeal to do something.” He said that “virtually every AIDS service-providing agency in the city” condemned Joseph’s plans to compile lists of people who test positive for HIV because testing “raised the specter of discrimination in employment, housing, health insurance and other areas.” Katz found quarantine a “chilling” prospect, and he evoked by analogy Hitler’s control of syphilis as outlined in Mein Kampf: “There must be no half-measures; the gravest and most ruthless decisions will have to be made. It is a half-measure to let incurably sick people steadily contaminate the remaining healthy ones.” In an example closer to home, Katz quoted North Carolina Senator Jesse Helms: “I think somewhere along the line we are going to have to quarantine, if we are really going to contain [AIDS].”11

  Both Joseph and Katz wanted to protect the health of New Yorkers, and both understood that civil liberties and public health, which they agreed are valuable, can come into conflict. The two disagreed about what process should decide policy when that conflict occurs—Joseph’s plan, for example, did not include any shared decision making with people infected with HIV. Most significant, they did not share ideas about when in the process isolation should be invoked, and Katz particularly worried that too early a use of quarantine might produce resistance. The differences between Joseph and Katz seem minor when Hitler is held up as the extreme position, but the general priority Joseph was willing to articulate in favor of the uninfected over the currently infected significantly distinguishes the two.

  The delicate balance between personal liberty and public health as it applies to our current health crises in the United States can be explored further through a look at Cuba’s policies for people infected with HIV. In 1986 Cuba initiated a national program to contain AIDS, including systematic screening, isolating all HIV-positive people in sanatoriums, and requiring all HIV-positive pregnant women to abort. The plan was comprehensive and not voluntary for Cuban citizens. In the sanatorium, people who tested positive for HIV and those suffering from AIDS received aggressive medical treatment and care, more than might be available to them outside. This “odd blend of care and coercion,” as anthropologist Nancy Scheper-Hughes calls it, has resulted in an extremely low incidence rate of the disease in Cuba.12

  There are other factors that help explain the apparent Cuban success in containing AIDS. Since Castro’s revolution, intravenous drug use, a significant contributor to HIV transmission, has been severely curtailed. Cuba also maintains a strict sexual code, which discourages another common route of AIDS transmission. Because of its economic isolation in the hemisphere, Cuba also is relatively underexposed to the disease. Nonetheless, those who studied the situation agree that isolation of HIV-positive people can be credited with helping Cuba to keep the disease at bay.

  But at what political and personal cost? The Cuban government forced a group of citizens to leave their work and communities abruptly and move into settlements of the infected, behind barbed wire. Is this what we in the United States envision as necessary to protect the health of the uninfected? If containing a disease that, for now, can be limited only through prevention is a high priority for the United States, we must examine the Cuban experience. Indeed, Scheper-Hughes, who made multiple visits to Cuba to study their AIDS-control activity, concludes that Western democracies should take note and reevaluate their own thinking: “Individual liberty, privacy, free speech, and free choice are cherished values in any democratic society but they are sometimes invoked to obstruct social policies that favour universal health care, social welfare, and equal opportunity.”13

  Writer Karen Wald interviewed Cubans inside and outside the walls of the sanatorium to examine whether the barriers represented a “golden cage” or a prison. She insists that those inside receive good care in a “super luxurious setting that includes everything from high protein diet to air conditioners and color televisions in resort-like cottages and modern apartments.” But, she acknowledges, “for those who value personal liberty over all else—even life—the Cuban requirement that HIV carriers relocate to a health care facility . . . is on a par with placing them in a concentration camp.”14 Wald is convinced that most Cuban people believe the risks to the general population are great enough to justify the forced incarceration. According to Wald, those who have themselves undergone the isolation feel a “sense of security” within the walls and understand that AIDS itself is their worst problem, not where they live or work. Cubans who do not test positive for HIV feel a lot safer because the infected ones are inside: “Well, I’m safe as long as they’re in there.”15

  Whether or not Wald’s and Scheper-Hughes’s assessments are overly positive, more recent economic hardships in Cuba preclude optimism about the maintenance of the quality of physical care within the institutions. The economic constraints coupled with the rise in the numbers of HIV-infected people isolated in the special sanatoriums have led to some deteriorating conditions and greater dissatisfaction of the inmates. While there are continuing reports that some pe
ople infect themselves in order to escape the escalating deprivations outside the barbed-wire confines, many of those inside find significant reason to be dissatisfied. One told New York Times reporter Tim Golden, “It is very difficult to be just sitting here waiting to die.” Isolated and depressed, another inmate realized, “We have lost our freedom; that is the most important thing there is.”16

  Recent Cuban experience illustrates another very significant outcome of the forcible isolation policy: It has not been effective in stopping the epidemic. The confidence and safety that people have felt outside the walls of the sanatoriums have been demonstrated to be false. The numbers of people infected with HIV in Cuba continue to grow despite the policy, especially as the country opens to more foreign tourism and investment. As one observer put it, “The isolation of people in the sanitariums [sic] has given everyone else a mistaken idea. They think that AIDS is in the sanatoriums, not out on the street.” Because of their sense of security, Cubans generally do not adopt practices, like the use of condoms, that would stem the spread of infection. Although arguably slowing the spread of the epidemic, forcible isolation has not been able to stop it.17

  Considering Cuba’s experience alongside New York’s history with Mary Mallon may help us begin to resolve United States’ priorities. Officials in New York immediately isolated Mallon in 1907, but they did not repeat the policy with most other carriers, even other noncooperative carriers. By comparison, Cuba’s example of AIDS control, however much we might condemn its totalitarianism, is at least in appearance consistent and even-handed, applying equally to all who test positive. The question remains, though: Are lower disease rates and equity sufficient measures of the value of a public health program?