Medical historians, medical anthropologists, and other scholars concerned with a plethora of topics have written works centered around specific diseases; what comprises their arguments, evidence, and conclusions, however, varies greatly and begs the question, what exactly is the history of a disease, and how have scholars employed disease as a schema through which they analyze other topics? This essay will attempt to provide specific examples of historians (and anthropologists and literary scholars) using illness as a framework, and it will elucidate the benefits, drawbacks, and consequences of such work.
Few medical historians would argue with the statement that a disease is a constructed entity. The biology of an illness constitutes only a part of its meaning to the society from which it emerged. Oftentimes, there are non-biological factors — “beliefs, economic relationships, societal institutions,” to name a few — that also make up the concept that is a particular disease. Syphilis is a good case in point. The biology of the disease is fairly standard; it is a bacterial infection that, if left untreated, can become quite serious. Because of the way that it is transmitted, however, syphilis has garnered a scandalous reputation and has been associated with sin since its appearance in Europe in the late 1400s. The way the disease was handled institutionally (syphilitics were often banned from hospitals or placed in homes amongst one another) and the way that sufferers experienced it (often shunned from society, and when treated at all, given needlessly harsh “remedies”), shows that it was, at least in the eyes of the religious societies it ravaged, much more than what its biological attributes would suggest.
If, then, diseases carry in their conceptions more than their biologies, studying the way that people, institutions, practitioners, and societies in general interact with illness can tell us a lot about that society, and by centering their work around certain diseases, historians can look at the specific aspects of society those diseases’ definitions are ingrained within. A study of syphilis, for example, would prove insightful to a historian looking at religion, morality, and sexuality, as these abstract principles were entwined within contemporary understandings of the disease. Anyone commenting on syphilis in the fifteenth and sixteenth centuries was likely to have something to say about the immorality and sexuality of the sufferers, as juxtaposed with the more religious individuals who kept the scourge at bay with their superior righteousness and adherence to stricter moral codes. Disease can help a historian tease out the more intricate, sometimes contradictory beliefs societies and individuals have held, and as a universal if not experience, at least anxiety, disease is something that everyone — rich or poor, young or old, educated or illiterate — would have run into and held assumptions about.
The universality of disease does not imply that the experience of disease has been homogenous. As some of the works included in this essay will attest, disease has played into already extant lines of difference between segments of a population. It can isolate and stimulate discourse on these populations at the fringes of society; German measles did so for women and for the disabled, as Sickle Cell Anemia did (and continues to do) for African Americans. It can bring visibility to groups of people, prompting humanitarian action, as cholera did for some of the poorest individuals in nineteenth century New York. It can also serve to condemn, as many believed AIDS did when it struck down a disproportionate number of homosexual males during its rampage in the 1980s. Whatever the case may be, it is clear that diseases can tell many stories, and as such provide an excellent avenue through which historians can understand the social, economic, political, and medical dynamics of a group of people.
The stories a disease tells are greatly influenced by which division of an affected population the writer chooses to vivify and how those individuals interacted with the illness (or the ill) themselves. A primarily institutional perspective, such as the one adopted by Charles Rosenberg in The Cholera Years, will provide insight into major ideological trends; state and national responses to the cholera epidemic in the mid-1800s included prayer and fasting, while just a few decades later, methods from the public health sector (quarantine and cleaning cities) dominated the institutional response. This outlook can highlight major changes in theoretical and practical understanding and in who holds institutional power (in this case, the medical experts or theologians). While this method offers much by way of the ideological leanings of the academically and socially significant members of the populace, it also leaves many actors out of the narrative. The experiences of the practitioner and the invalid factor very little into these stories, to the detriment of their plenitude.
In contrast, an author may choose the opposite route and focus instead on the experience of the afflicted, as S. Lochlann Jain does in Malignant. This method offers in-depth analyses of the experience of the disease itself — it answers questions about what was and was not available to sufferers, and how they were treated by their friends, families, doctors, and governments. Jain exposes corporate fundraisers for cancer research as short sighted and opportunistic, just as she points out inconsistencies and holes in the healthcare system for young adults (the seemingly healthiest segment of the population). Her unique perspective comes from someone having dealt with the disease firsthand, and the insights she offers as a result circle primarily around that perspective. It is quite powerful, but like all viewpoints, it is not universal, and it fails to elucidate the institutional standpoint; the doctors who treat cancer day after day, for instance, do not have a voice in Jain’s work. It is extremely difficult to trace larger trends in theoretical, scientific, or practical understandings held by the scientific community, the government, or various medical associations from the sole perspective of those they attempt to care for.
The final potential perspective of disease lies with those who probably spend the most time surrounded by it — the practitioner. In some ways, the perspective of the doctor encompasses both the institutional narrative and the personal one. The practitioner can serve as a go-between, as a representative of larger medical and governmental bodies who brings institutional wisdom to the commoner. By the same token, doctors can provide those suffering with a voice in an institution; in many nineteenth century epidemics, for instance, it was the doctors of a town, not the government, who provided the impetus for a public health board and suggested quarantine or cleaning measures. It would seem that this perspective would be ideal, but doctors often have outside motivations such as professional advancement (or establishment in the case of pre-twentieth century practitioners), political agendas, and personal belief systems that influence their treatment of certain patients (many doctors during the AIDS epidemic, for instance, felt they had little responsibility to treat a disease caused by sinful homosexuality). Their perspective must be subject to the same sort of scrutiny one would employ when analyzing any story told from a single viewpoint and is best supplemented with others.
Most of the works in the following analysis employ multiple perspectives in telling their histories of disease, but each work tells a story that might have been told many different ways from different perspectives. What the author chooses to include — whose story of illness they decide to impart — depends upon what other entity, idea, or phenomenon they are attempting to understand. By using disease as a framework, the following authors are playing on the intersections between the wider, socially constructed definition of a disease and the society and time that experienced it. Through the excited, fearful window disease offers into the past, the following books, by utilizing the various perspectives offered, paint pictures that, while certainly include the diseases themselves, also give form to other processes, phenomena, and belief systems that constitute the societies whose reactions form the bases of the studies.
The Cholera Years
The first work to be dealt with here is Charles Rosenberg’s dissertation-turned-book The Cholera Years: The United States in 1832, 1849, and 1866. It is first not only because it is a stellar example of disease as framework; it was also trailblazing, as evidenced by the fact that many of the other pieces dealt with cite it when describing their methodologies. As one of the first works to use heightened disease anxiety (most often in the form of an epidemic), Rosenberg’s work presents an excellent starting point. The book is predictably divided into three sections, one devoted to each outbreak, and focuses on the different governmental and sometimes institutional reactions to each subsequent epidemic.
The post-colon portion of the book’s title betrays the focus, on the United States in three snapshots in the nineteenth century, instead of on cholera itself. The outbreaks, Rosenberg states in the introduction, “represented a constant and randomly occurring stimulus against which the varying reactions of Americans could be judged.” In other words, each time cholera threatened the nation, Rosenberg could trace the reactions of its citizens and compare them with those before and those after. By using cholera as a framework of analysis, he could reach an understanding of societal changes, and, he asserts, the processes that brought them about in mid-nineteenth century America.
Rosenberg focuses on a few particular changes he sees through the reaction to cholera. First and foremost, the religious dimensions of the response, he claims, see marked change from 1832 to 1866. The piety so characteristic of Jacksonian America had faded to the background by 1866, replaced by a rise in materialism. This he traces through responses to cholera epidemics, in which he finds the clergy having decreased authority, and an increased tendency to fault uncleanliness as opposed to alcoholism and other, unrelated vices as cause of cholera emerges in newspapers and commentaries by medical and governmental authorities. Another line of theoretical change Rosenberg defines in his study is that of disease causation. In 1832, cholera was seen as a miasmatic entity that, in combination with uncleanliness and immorality, brought down primarily the poor and filthy. By the 1866 epidemic, however, most physicians believed that cholera was indeed a specific disease, caused by the ingestion of “some quantity of a specific poison,” although the exact nature of its constitution would have to wait until 1883 when Robert Koch isolated the true culprit, Vibrio cholerae.
Leslie J. Reagan’s Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America is a book about the German measles epidemic of the 1960s in America, although the disease around which the book is centered does not even make the title. This is because, as Reagan reveals in her introduction, the book uses German measles as a framework of analysis:
“This history investigates these cultural products and effects and uses the disease to identify the approaches of American parents to pregnancy and family, the role of ordinary Americans and patients in the creation of law and political movements, the state’s relationship to the responsibilities of its citizens, and the development of citizen rights and expectations.”
Her work, while made possible by an epidemic, does not find its center around the disease that ravaged the American family in the mid-twentieth century. Instead, her book aims to understand the many effects this event had on those it touched (directly or remotely); because it affected childbearing women, an integral part of the population, it had direct ramifications for the political and social atmosphere of 1960s America.
Dangerous Pregnancies, with a source base that includes newspaper articles, court cases, images, educational pamphlets, and magazines, encompasses many angles of experience. Mothers of disabled children find a voice in magazine articles, just as scientists and medical professionals are represented by specialized medical literature and government documents. Images feature prominently in the text, because, as Reagan asserts, they “produced a dominant cultural climate that gave shape to people’s understanding of German measles, its consequences, and the possibilities for social change.” The author is attempting to paint a portrait of 1960s America — one that could only be possible in such vivid detail through the window provided by the German measles epidemic.
Through this window, Reagan is able to discuss the unique climate that German measles helped provide for the burgeoning reproductive rights movement. She artfully discusses how the biology of the disease — a biology that allowed it to cross the placental barrier and mark fetal development — produced unprecedented anxiety about fertility and the future, particularly potent in a post World War II America that was already rife with concerns about its ability to maintain power internationally. What made German measles especially unique, Reagan argues, was that it became associated with the white, middle class, a trustworthy group that garnered much attention and sympathy from laypeople and professionals alike. When white, heteronormative, wealthy women had need of abortions, a social movement to provide them legally resulted. This is starkly juxtaposed with the difficulties African American women often found when attempting to undergo the same procedure. In this case, a disease-based framework helps us to understand the ability of a respected, trusted group to enact social change under the ominous threat of debilitating illness, while at the same time pointing to the flagrant undercurrent of racism that continued to marginalize and deny equitable medical care to certain segments of the population. The contrast is stunning.
Dangerous Pregnancies is probably the most inclusive book surveyed here as far as breadth and integration of multiple perspectives go. Unlike some of the other works discussed in this piece, Reagan’s does not neglect the scientific side of the story. She includes in her narrative the development of a vaccine for German measles, and doctors’ and government officials’ thoughts and statements feature prominently. Reagan addresses race, class, and gender issues; she even throws in a few anecdotes that bring in the male experience of the disease, although her primary focus is on women’s encounters. The inclusion of legal proceedings, a rather atypical source base, gives a voice to customarily hidden actors like Sandra Gleitman and Barbara Stewart, two relatively normal American mothers who were told by their doctors that their contraction of German measles early on in their pregnancies would have no effect on their children (which was well known to be medically untrue). By incorporating the patient, the doctor, and the institutional perspective, Reagan offers a wholesome and well-researched portrait of a society, its culture, and the development of its laws, all through the use of a period of heightened anxiety made possible by a disease and its contemporary cultural understanding.
The Collectors of Lost Souls
With Warwick Anderson’s book The Collectors of Lost Souls, we transition into a different research tradition, but one that also utilizes disease as an explanatory tool. Anderson was trained as an anthropologist, and his work could be considered history of science, history of medicine, and/or medical anthropology. The conglomerate approach seems appropriate, however, as the story Anderson tells is itself interdisciplinary. His study traces the American and Australian discovery and subsequent research of a disease and a people living in the eastern highlands of New Guinea, placing emphasis on the interactions between the two groups, the commodification of Fore body parts (brains in particular), and the development of scientific and institutional understandings of kuru, the disease that came to be identified with the islanders. Anthropologists, virologists, and myriad other specialists were involved in the gathering of samples for study and transporting them to laboratories capable of the research, the physical experiments and trials run in order to understand the cause of the disease (for which there is no known cure), and the public health efforts aimed at stymying the epidemic by informing the Fore of its cause — their practice of cannibalizing their dead.
Anderson’s approach mirrors the others in strategy. In his introduction, he identifies kuru as a “social sampling device,” and “[a] potent stimulus to scientific activity” capable of “capturing the culture of biomedical investigation in the second half of the twentieth century.” Scientists keen on making their reputations flocked to research opportunities like kuru presented, and for good reason; Stan Prusiner, the man who isolated the pathogenic protein fragments that caused kuru, won a Nobel Prize for his work on the disease in 1997. Anthropologists jumped at the opportunity to conquer a new research frontier. The disease provided the impetus for the intense anthropological and medical investigation that ensued, furnishing a reason for the Fore and the scientists that descended upon them to interact, exchange goods, and form relationships.
Anderson uses the environmental set-up kuru created to comment on the dynamics of specimen isolation, creation, and distribution that was characteristic of the scientific investigation of kuru and of biomedical investigation in general in the late twentieth century. Field scientists operated as nodes in a network of exchange that included the kuru and remote laboratories and that was populated by specimens taken from kuru bodies. D. Carleton Gajdusek, a field anthropologist that features prominently in Collectors of Lost Souls, traded goods from the first world with the kuru in exchange for their deceased’s body parts, which he then traded within institutionalized scientific networks for professional prestige. Through an intense analysis of this dynamic, Anderson is able to pull apart and understand the intricate social implications inherent in both channels of exchange, and by juxtaposing them, provides deep insight into the complex colonial relationships developed in a twentieth century research hotspot.
Like all the works in this survey, Anderson’s use of disease as a framework makes visible a dynamic cast of characters; his scope of analysis includes the field anthropologists and scientists who interacted with the kuru, the scientists analyzing diseased samples in laboratories around the world, and occasionally the institutions sponsoring the research. The kurus’ voices are less animated than some of the others in his narrative, and although this seems to be a problem with available source material rather than one of methodological deficiency, their relative silence is problematic. How can we truly understand the dynamics of exchange between a native population and medical colonizers without the voice of the former? While it has its problems, Warwick Anderson’s use of kuru as a device to capture twentieth century science’s imperialistic nature and its toleration of commodification of the colonized was overall successful. It was in the unique medico-scientific environment provided by kuru that medical imperialism could flourish and first world scientists could be confronted and changed by their interactions with a culture and its socially constructed diseases.
Also coming from an anthropology background, the next work’s author, S. Lochlann Jain offers a firsthand account of her experience with cancer. Filled with snarky social commentary, Malignant is another example of a book that uses a disease’s many tendrils into the social and cultural landscape to analyze chosen aspects of society. While less of a historical work than the others featured here, Malignant provides an opportunity to understand how a more personal account — written not with patients’ perspectives in mind, but by an actual patient — can be useful. Jain’s insight into the medical establishment and the cultural and social experience of someone with cancer is something that the institutional and professional perspectives could never shed light upon. Through Malignant and Jain’s sharp, penetrating work, we can understand what a patient’s perspective has to offer, and, equally important, what it does not.
In her introduction, Jain works very hard to emphasize the cultural understanding of cancer; its biology is mentioned only in reference to how it gives the disease meaning in the context of society. Cancer, she argues, is difficult to define because it encompasses so much more than its biology. “[A] devious knave,” “cancer” is composed of the treatments (and their effects and stereotypes), an entire research industry (that chooses what to research and has a plethora of motivations that do not always include a cure), political groups lobbying for or against carcinogen regulation, and the politicians that choose what approach the government should take on the devastating scourge, just to name a few entities, technologies, and people involved. And yet, Jain points out, we do not have a cure, “…despite some of the shiniest, priciest, most marble-staircased hospitals in the country.” Cancer becomes a noun seemingly too simplistic to envelop the myriad meanings it evokes. It is, in Jain’s words, “not… a disease waiting a cure, but… a constitutive aspect of American social life, economics, and science…a process and… a social field.”
Cancer as a complex medico-cultural entity, far removed from its, in retrospect, rather simplistic biology is the framework Jain then uses to analyze her (and by extension, every patient’s) experience with the disease. Because her definition is so expansive, she has the opportunity to extend her analysis far beyond sufferers, doctors, and medical and governmental institutions, and she does so with headstrong ferocity. Her thesis — that cancer has become an integral part of American life culturally and economically — requires such breadth of inquiry. She touches on topics as diverse as pharmaceutical companies being deincentivised to develop and distribute specific (and therefore more effective) cancer drugs, the psychological effects of the reductionist, numerical approach to treatment, and the knowledge and experience gap between doctor and patient. Her source base is broad, consisting of scientific articles, popular news sources, advertisements, statistics, court documents, and more, all supplemented by personal anecdotes and experiences. This would imply integrating multiple perspectives, but none are fleshed out. Although she references many perspectives for her arguments’ sake, one is clearly dominant in her work.
At the risk of sounding reductionist, cancer is a disease; while it has many cultural manifestations and effects that make it unique and important, it is a large claim indeed to assert that cancer is as central to American culture, politics, and economics as Jain does. This is one of the weaknesses of the patients’ perspective; when threatened with a life-altering (and sometimes ending) illness, an individual would see it everywhere. Like Jain herself argues, it is difficult when diagnosed with cancer to remain an individual — sufferers lose their individuality to the disease, and it is difficult to gain it back. They either die or become a “cancer survivor,” and everything, including their perceptions and reasoning, can easily become influenced by their frightening and tragic experiences.
Malignant fails to provide practitioner and institutional perspectives, and as a result, its content is skewed by the vision of a single angle, albeit a powerful one. Jain fails to present why the statistical approach is used, and she leaves out the many success stories the current system has accomplished. While her work is very important — it highlights issues inherent in the way cancer is conceptualized and handled that could garner support for meaningful changes, and it offers a valuable look at the cancer experience from an articulate, thoughtful actor within — it fails to capture broader scientific and theoretical understandings of the disease. Without such an understanding, it is very difficult to explain the current system in a fair light, and paired with Jain’s irreverent commentary, a biased interpretation is the result.
The Wages of Sin
The last book to be included in this survey was authored not by an anthropologist or a historian, but a literary scholar. Peter Lewis Allen wrote The Wages of Sin: Sex and Disease, Past and Present about many diseases; greatly affected by the AIDS epidemic of the 1980s, Allen approached his work differently than most others. His experience with institutional responses to AIDS, and their subsequent effect upon a vulnerable and suffering population, sent him looking for the roots of such phenomena. What he came up with was a consortium of illnesses that had historically been associated with sin, sexual deviance (as was the case with AIDS) being a major component of most eras’ beliefs on immorality. He thus isolated an aspect of society to look at — conceptions of sin — and found examples of diseases with cultural definitions that included a dimension of immorality.
In an attempt to establish a timeline from the Middle Ages — “the cradle of the modern world” — to the AIDS epidemic, Allen chose illnesses that he perceived as exemplary of his theoretical hypothesis from 1000AD to the modern era. A disease would emerge and become associated with vice, and subsequently, those afflicted with it would be treated poorly by medical institutions and practitioners alike. His case studies include lovesickness and leprosy in the Middle Ages, syphilis and the Bubonic Plague in the early modern period, masturbation (or “onanism”) in the nineteenth century, and, of course, AIDS in the twentieth century. By looking at the way that institutions and practitioners characterized the disease and those that carried it, Allen tries to show institutional discrimination based on sexuality, morality, religiosity, and lifestyle. His source base includes medical tracts, theological treatises and sermons, and, especially in the chapters on more recent diseases, personal accounts and government-sponsored pamphlets.
The biggest issue with Allen’s work lies in his approach. Though he is open about his bias, like S. Lochlann Jain, his experiences with socially stigmatized disease colored his interpretive approach to his research. Instead of taking the diseases as the complex and multi-faceted entities they are, Allen focused on a single aspect of their definition — their cause — and even within that narrow framework considered only perceived causes that supported his argument.
Even while writing within a context of patient injustice, Allen’s source base is primarily composed of institutional and practitioners’ perspectives. This is perhaps due to a lack of sources for patients’ experiences, but it presents a methodological issue; how can we understand the hardships that theoretical links between disease causation and morality impart upon the ill when their experiences are not vivified? True, the practices outlined by doctors for the treatment of syphilis sound heinous — mercury, one of the most popular anecdotes for the disease, caused “excessive salivation, loosening of teeth, pain and numbness in the extremities, uremia, renal damage… vomiting, dizziness, convulsions, tremors, liver damage, anorexia, severe diarrhea, and mental deterioration” — but as mentioned in the introduction, if this information comes from doctors, their motivation and biases may have influenced their writings. Without the voices of the oppressed, Allen’s argument is difficult to bring to satisfying fruition.
In a way, the book Allen was trying to write is nearly an impossible endeavor. Diseases cannot be reduced to a single dimension of their complex and intricate social understanding; when a writer does so, he or she is oversimplifying the issue to the point of historical inaccuracy. Yes, sufferers of AIDS certainly experienced very real discrimination as a result of their affliction being associated with sexual deviance, but some doctors and politicians did not share this view. As the case of Ryan White, a child diagnosed with AIDS whose school community attempted to keep him from attending for fear of infection, shows, anxiety about HIV was multifaceted and concerned with more than just homophobia. Although is work is useful in that it highlights major ideological trends in disease conception and association with morality, its value as an example of employing disease as a framework of analysis is notably lackluster.
Diseases are complex entities that require in-depth and multi-faceted approaches to properly understand, but through their complexity, they have amazing capabilities as frameworks of analysis. Because their definitions are so expansive, and because they touch so many aspects of social and cultural experience, they can provide an excellent inroad into issues that might at first seem unrelated. Leslie Reagan demonstrated how they can uncover race and gender issues inherent in medical care and political activism, and Peter Lewis Allen exhibited how they can be used to understand morality and blame. Equally important is the way diseases can provide environments of heightened anxiety that present a society’s prejudices, fears, and motivations in microcosm, ripe for analysis. Warwick Anderson made use of the atmosphere kuru created in order to understand networks of scientific and anthropological exchange, just as Charles Rosenberg utilized epidemics of cholera, and the abundant commentary they bred, to trace changing ideas about disease causation and religiosity. The power of disease for any historian is hard to contest.
In order for a framework of illness to avoid biases, however, it is important for researchers to be inclusive. Acknowledging the complexity of socially constructed definitions of diseases is paramount, and to do so, an author must incorporate more than just a single perspective. Illness is experienced by different players in the game that constitutes dealings with disease in different ways, and a methodology that only employs a single angle, or even does not employ all of them — the patient, the practitioner, and the medical institution with which both are associated — will produce only a piece of a complex and difficult puzzle. Many of the works surveyed here fell into this trap, to the detriment of the integrity of their work. They may have maintained useful arguments and made points worth pursuing, but their narratives were nonetheless incomplete if they did not incorporate the many experiences that make up disease.
 Robert A. Aronowitz, “Lyme Disease: the Social Construction of a New Disease and Its Social Consequences,” The Milbank Quarterly 69, no. 1 (1991): 79.
 Peter Lewis Allen, “Syphilis in Early Modern Europe,” in The Wages of Sin: Sex and Disease, Past and Present (Chicago: University of Chicago Press, 2000).
 See Leslie J. Reagan, Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America (Berkeley: University of California Press, 2012) and Keith Wailoo, Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health (Chapel Hill: University of North Carolina Press, 2001). Although not included in this survey, Wailoo’s work also utilizes disease (in this case, sickle cell anemia) as a framework of analysis.
 Charles Rosenberg, “Poverty and the Prevention of Disease” in The Cholera Years: The United States in 1832, 1849, and 1866 (Chicago: University of Chicago Press, 1962).
 Peter Lewis Allen, The Wages of Sin: Sex and Disease, Past and Present (Chicago: University of Chicago Press, 2000), xvii.
 Peter Lewis Allen, The Wages of Sin, xviii.
 Charles Rosenberg, The Cholera Years: The United States in 1832, 1849, and 1866, 4.
 Ibid., 219.
 Emphasis added. Leslie J. Reagan, Dangerous Pregnancies (Berkeley: University of California Press, 2012), 2.
 Leslie J. Reagan, Dangerous Pregnancies, 3.
 Warwick Anderson, The Collectors of Lost Souls: Turning Kuru Scientists into Whitemen (Baltimore: Johns Hopkins University Press, 2008), 5.
 Ibid., 202.
 S. Lochlann Jain, Malignant: How Cancer Becomes Us (Berkeley: University of California Press, 2013), 2.
 Ibid., 4.
 Peter Lewis Allen, The Wages of Sin, xix.
 Peter Lewis Allen, The Wages of Sin, 55.