From the very beginning of the epidemic, AIDS was linked to punishment. Calls to punish people living with HIV—mostly stigmatized minorities—began before doctors had even settled on a name for the disease. Punishing Disease looks at how HIV was transformed from sickness to badness under the criminal law and investigates the consequences of inflicting penalties on people living with disease. Now that the door to criminalizing sickness is open, what other ailments will follow? With moves in state legislatures to extend HIV-specific criminal laws to include diseases such as hepatitis and meningitis, the question is more than academic.
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About the Author
Trevor Hoppe is Assistant Professor of Sociology at the University at Albany, State University of New York, and a coeditor of The War on Sex.
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Controlling Typhoid Mary
When reports began to emerge in October 2014 that a New York City doctor had fallen ill with Ebola, media outlets whipped themselves into a frenzy. Mayor Bill de Blasio attempted to reassure the public that there was no risk of an Ebola outbreak in the Big Apple at a press conference announcing that Dr. Craig Spencer had tested positive for Ebola. "We want to state at the outset — there is no reason for New Yorkers to be alarmed," de Blasio said. The mayor's efforts to assuage the public, however, did not dissuade a flurry of Twitter commenters, bloggers, and even mainstream media reporters from feeding public hysteria. Predictably, the New York City tabloids ran sensational front-page headlines that capitalized on New Yorkers' fears: "EBOLA HERE!" (New York Post) and "NY DOC HAS EBOLA" (New York Daily News).
Over the next twenty-four hours, reporters began to piece together the timeline of Dr. Spencer's movements through a combination of news releases from the governor, the New York City Health Department, and even the ride-sharing service Uber. New Yorkers were collectively outraged by the story that crystallized: not only did Spencer not remain in his apartment under self-quarantine, but he took an Uber to go bowling in Williamsburg! The New York Times — the city's standard-bearer — ran a short, dry online piece headlined "Can You Get Ebola from a Bowling Ball?" The New York Daily News ran a more sensational piece, "New Yorkers, Twitter Users Wonder Why Dr. Craig Spencer Went Bowling," that featured a collection of more than a dozen angry posts from Twitter users condemning the doctor's actions. That article cited a post from Twitter user ericbolling that encapsulated much of the public anger expressed towards Spencer online: "ABSOLUTELY NO SYMPATHY for a doctor who knows he's been in contact w/Ebola, goes bowling, takes 2 subways, has contact with girl, Uber. None." Online comment threads predictably devolved into angry disputes over issues as diverse as gentrification (keywords: uber, Williamsburg) and Ebola transmission pathways (keywords: saliva, bowling ball).
Dr. Spencer's infection came on the heels of the death of Thomas Eric Duncan, a Liberian man who became ill after traveling to the United States. Furious debate centered on Duncan's first visit to the hospital after he initially developed symptoms. Although he told a nurse he had traveled to Africa, that information was not communicated to other medical staff. When his providers asked him if he had been in contact with Ebola patients, he reportedly said no — a statement that was not true. Medical staff discharged him with a prescription for antibiotics, sending him back out into the world, where he might have inadvertently exposed others to the disease. Authorities in Liberia were outraged — not with medical providers or their failure to catch his infection earlier, but with Duncan himself. Liberian president Ellen Johnson Sirleaf characterized his failure to report contact with Ebola patients as "unpardonable." Airport officials went further, threatening to file criminal charges against Duncan should he ever return home.
Across the Hudson River, Nurse Kaci Hickox returned to New Jersey from Sierra Leone, where she had been treating Ebola patients. After being quarantined in New Jersey by health officials for two days, she was allowed to return home to Maine, where health officials pressured her to quarantine herself. She openly defied those calls and was photographed biking around her hometown (a fact jokingly cited in a Saturday Night Live skit about her case: "that's Kaci with an 'I'— as in I don't care if I got Ebola, I'm riding my damn bike!"). Maine governor Paul LePage threatened to take action but hesitated to follow New Jersey's lead in instituting mandatory twenty-one-day quarantine policies for anyone who had been in contact with Ebola patients after Centers for Disease Control and Prevention (CDC) director Anthony Fauci called such policies "a little bit draconian." Backed by the American Civil Liberties Union, Hickox sued New Jersey for depriving her of her liberty in a case that remains pending.
The range of responses to these three cases — moral outrage, criminalization, and quarantine — illustrates the spectrum of coercive and punitive attitudes toward the sick, which have deep roots in public health history. The tension between individual liberty and public health stretches as far back as Typhoid Mary, an Irish immigrant and asymptomatic typhoid carrier who was quarantined in 1907 by New York authorities. For centuries, public health officials have waged a battle — sometimes against overwhelming odds — to promote and protect the health of populations and to prevent the spread of disease. Controlling the actions of individuals and communities believed to spread disease has been a core public health strategy, including persuading people to take up practices believed to be "healthy" while discouraging or regulating those actions believed to be "unhealthy." In its battle to preserve population health, a key weapon of public health has been what sociologists refer to as social control.
This chapter traces the history of coercion, persuasion, and regulation in American disease control — first, by examining the rise of coercive practices such as quarantine in the face of deadly and rapidly spreading infectious diseases like the plague; second, by turning to the rise of persuasion and regulation in the twentieth century as improved sanitation, better nutrition, and the advent of antibiotics and vaccines erased the most horrific diseases from the American epidemiological landscape; and third, by revealing how the emergence of new infectious diseases in the late twentieth century such as AIDS and Ebola, as well as new antibiotic-resistant strains of old scourges like tuberculosis, sparked renewed demands for coercive and punitive approaches to disease control.
COERCION AND PUNISHMENT IN THEORY AND PRACTICE
Coercion and punishment are not necessarily the same. Health authorities have an interest in controlling disease and that has at times required restricting the freedom and movement of individuals and even entire communities. In the context of public health law, coercion is defined as restricting the liberty of a person or a group of people in the interest of protecting or promoting the public's health; it does not necessarily imply that the person or group of people has committed an offense. Punishment, on the other hand, is a social response to a person's wrongdoing; while it necessarily involves coercion (through fines, jail time, or other means), it is also specifically intended to punish.
Although on paper this distinction between coercion and punishment appears straightforward, in practice it can become muddied. For example, the Supreme Court has upheld "civil confinement" programs under which convicted sex offenders are detained well beyond their court-ordered prison sentences, potentially indefinitely, as deemed necessary by corrections officials. The court has ruled that this continued detention does not violate constitutional guarantees against double jeopardy because the procedures are civil rather than criminal in nature; the prisoner's extended detention, the court further reasoned, is therefore not punishment at all because "the commitment determination is made based on a 'mental abnormality' or 'personality disorder' rather than on one's criminal intent." The fact that the conditions of civil commitment are virtually indistinguishable from prison is treated almost as a coincidence; the programs' intended function differentiates their constitutional standing. Public health experts have made similar observations of the state's power to quarantine: under certain conditions, the deprivation of liberty imposed through isolation exceeds what is constitutionally permitted under the criminal justice system.
These legal and philosophical distinctions may prove cold comfort to the detained sex offender or the quarantined person; whatever the state's intent, the effect of detention may well be experienced as punitive. Although the coercive practices critically examined in this chapter may not constitute punishment in the strict, constitutional-law sense of the term, this chapter nonetheless considers historical cases in which public health practice has taken on characteristics of state-sanctioned punishment.
When and how does coercion turn punitive in public health practice? The hallmark of a punitive campaign is the attribution of blame: punishment is meted out by the state against individuals who have been found culpable. Calls to blame someone for their actions are nearly invariably followed by calls for their punishment. This is most obvious in cases of criminalization in which individuals are tried before a court of law, found guilty, and punished accordingly. But criminal justice authorities do not have a monopoly on blame. Although medical problems are supposed to be handled neutrally, many people — including some doctors and public health officials — nonetheless ascribe blame to individuals who become sick. This chapter examines moments in public health history in which the line between coercion and punishment has been blurred.
QUARANTINE AND COERCION IN PUBLIC HEALTH HISTORY
On an otherwise ordinary winter afternoon in 1907, authorities arrived at a Park Avenue home in New York City to take the cook, Mary Mallon, into custody. Mallon was accused not of theft or murder but instead of unwittingly spreading typhoid to several members of the households in which she worked as a cook. Authorities had tracked Mallon down by following a trail of "breadcrumbs" left in her wake: a string of typhoid infections and deaths. Antibiotics did not yet exist, and nearly 10 percent of those infected with the disease died.
Authorities told Mallon that she could have her freedom if she allowed them to remove her gallbladder (where the disease was believed to be festering) or agreed to change her profession. Mallon refused, in large part because she did not believe that she was a carrier of the disease, and, as such, she argued that her detention was unjust. In 1910, Mallon finally relented and agreed to stop cooking and work instead as a laundress. However, after her release, she became frustrated with the lower wages of laundry workers. Adopting an alias to conceal her widely reported identity, she returned to cooking. In 1915, authorities detained her again after food she had prepared was found to be the source of another outbreak. She spent the next twenty-three years in isolation on North Brother Island at Riverside Hospital, which was largely used to quarantine tuberculosis patients. The facility was notoriously isolating and poorly managed. One historian describes the site in this way:
Five miles up the East River, approximately 1,500 feet east of 140th Street in the South Bronx and, on a bad day, downwind from the city's garbage dump on Riker's Island, was the city lazaretto, Riverside Hospital on North Brother Island. Even a century later, when one stands on the rocky shoals of the island, peering into the distance, the city seems remote and inaccessible. The sense of loneliness on North Brother Island is almost palpable. The site had been used as a small hospital for the poor afflicted with contagious diseases since the 1850s. ... The facilities lacked space, financial resources, adequate medical equipment, and nursing personnel. Mallon spent the remainder of her life on North Brother Island's "rocky shoals," where she died in 1938. Soon after her first quarantine, a 1908 issue of the Journal of the American Medical Association labeled her "typhoid Mary "— a moniker that would live on in notoriety long after her death.
Although Mallon's case is perhaps the most widely reported quarantine in public health history, she was hardly the first person in history to be quarantined. The fact that the hospital she called home was located on an island is the relic of a much longer history that begins in medieval Europe during the fourteenth century. The bubonic plague — colloquially known as the Black Death — claimed the lives of millions. (It has been estimated that 75–200 million Europeans died of the plague between 1346 and 1353.) Scholars believe the epidemic began in central Asia and traveled along trading routes to Western Europe by way of Italian merchants. Sicily was wracked by one of the first known outbreaks in October 1347, followed quickly by Genoa and Venice in January 1348. Confronted with this rapidly spreading and poorly understood affliction, officials in the Italian city states forced ships from plague-infested countries to remain anchored for a period of time at island isolation stations known as lazarettos. Infected sailors were confined to hospitals on the island. Sailors and ships were originally confined for thirty days under a trentino policy; when it was extended to forty days, the policy became known as quarantino.
On land, infected people were isolated to their homes in cities across Europe. Authorities erected cordons sanitaires, blockades that sectioned off whole neighborhoods to prevent anyone from entering or leaving. Unfortunately, cordons sanitaires were rarely successful because the plague was not primarily spread by human-to-human contact. Instead, most scholars today agree that the disease was spread primarily through rodents infested with a species of flea that carried the bacteria Yersinia pestis in its gut; while blockades could restrict the movement of humans, they did little to prevent rodents from freely moving across cities. But this fact was not yet known so authorities continued to cordon off homes and entire neighborhoods.
When colonists left Europe for the New World, they brought these practices with them. Quarantine and isolation were widely used from the seventeenth through the nineteenth century as America faced epidemics of smallpox, yellow fever, cholera and typhus. Although the late-eighteenth-century sanitarian movement — which focused on providing clean water, sewage disposal, and hygienic housing — had a profound impact on infectious disease long before effective medical treatments or vaccines were developed, equally important were the more coercive practices of quarantine and isolation.
In the United States, two systems of quarantine gradually emerged. In ports, a system of maritime quarantine stations — eventually managed by the federal government — detained and inspected cargo, crew, and immigrants from countries with outbreaks of contagious diseases. In cities and towns, local outbreaks were managed by state and local health officials. In the wake of the Industrial Revolution, overcrowding, unsanitary living conditions, and urban poverty led to frequent outbreaks of infectious diseases. Local officials ordered the isolation and confinement of infected individuals and suspected carriers to "pesthouses," hospital wards, or their homes. Nineteenth-century public health officials adopted other methods that were only slightly less coercive: compulsory vaccination, imposing fines or confinement of those who refused, mandatory reporting of infected patients by physicians to disease registries, contact tracing, and other surveillance techniques.
Better nutrition, improved sanitation, and the advent of vaccines and modern medicine began to turn the tide against many widespread infectious diseases in the twentieth century. In the wake of these shifts in mortality and morbidity, many public health experts came to view coercive strategies for containing epidemics as old-fashioned or even regressive. Medical historian Eugenia Tognotti describes the perspective at the turn of the century:
In 1911, the eleventh edition of Encyclopedia Britannica emphasized that "the old sanitary preventive system of detention of ships and men" was "a thing of the past." At the time, the battle against infectious diseases seemed about to be won, and the old health practices would only be remembered as an archaic scientific fallacy. No one expected that within a few years, nations would again be forced to implement emergency measures in response to a tremendous health challenge.
That challenge came in the form of the devastating influenza epidemics that traveled around the world in 1918, claiming the lives of between 20 and 40 million people. In the face of such a rapidly spreading and deadly disease, local municipalities closed churches, schools, and movie theaters and prohibited attendance at funerals and other public gatherings.
Excerpted from "Punishing Disease"
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Table of Contents
List of Illustrations Acknowledgments
Introduction. Punishment: AIDS in the Shadow of an American
Institution Part One: Punitive Disease Control 1. Controlling Typhoid Mary 2. “HIV Stops with Me” 3. The Public Health Police Part Two: The Criminalization of Sickness 4. Making HIV a Crime 5. HIV on Trial 6. Victim Impact Conclusion. Punishing Disease Appendix 1. Methods: On Analyzing the Anatomy of a Social Problem Appendix 2. State HIV Bills Notes
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