HIV/AIDS Flashcards
What do AIDS and HIV stand for?
Acquired Immune Deficiency Syndrome
Human Immunodeficiency Virus
Gilman (1987), Social construction of AIDS
People have been stigmatized (and destroyed) as much by the “idea” of AIDS as by its reality.
Gilman (1987), Iconography of disease
Icons of disease appear to have an existence independent of the reality of any given disease
Disease is thus restricted to a specific set of images, thereby forming a visual boundary, a limit to the idea (or fear) of disease
It is in the world of representations that we manage our fear of disease, isolating it as surely as if we had placed it in quarantine
AIDS cases first identified (though not understood as AIDS)
1979 Alvin Friedman-Kien of New York University Medical Center identified a group of patients suffering from a rare form of cancer, Kaposi’s sarcoma (KS), which presents striking symptoms, bluish or purple-brown lesions on the skin
Normal course of the disease seldom fatal, but these young patients were dying within eight to twenty-four months of their diagnoses
Centres for Disease Control and Prevention (CDC), initial attempts to construct image of the patient
- living in large urban areas (New York, Miami, Los Angeles, and San Francisco) - all young men
- all homosexual
Morbidity and Mortality Weekly Report (MMWR), June 5 1981 - noted the patients’ sexual orientation, and more importantly its “quality”: ‘Two of the
five [patients] reported having frequent homosexual contacts with various
partners’
Emergence of gay-related immunodeficiency (GRID) label
first quarter of 1982
Gilman 1987, initial understanding of AIDS
specific subset of the larger category of sexually transmitted diseases (STDs), as a disease from which homosexuals suffered as a direct result of their sexual practices and related “life-style” -for example, the use of “poppers”
fact that AIDS appeared in the late 1970s served to link the disease to two unrelated social concerns: first, the perception of an increase in STDs in the US (following a period of perceived decline), signalled in 1975 by the declaration of the National Institute for Allergy and Infectious Diseases that research into STDs was its number one priority; and second, the growth of public awareness -at least in large urban areas - of the gay liberation movement, which followed in the wake of the Stonewall riots in Greenwich Village in 1969
AIDS was characterized not as a viral disease, such as Hepatitis B, but as a sexually transmitted disease, such as syphilis.
Appearance of syndrome among groups such as haemophiliacs and IV drug users first recorded by the MMWR
late 1982
Gilman (1987), AIDS and Syphilis
Stresses link between iconographies of AIDS and syphilis:
appropriation of the iconography of syphilis for the representation of people with AIDS is not random; it is, rather, a result of the perception that the sexual orientation of people with AIDS was determinant, and that these people suffered from a sexually transmitted disease
“taming” of syphilis and other STDs with the introduction of antibiotics in the 1940s left our culture with a series of images of mortally infected and infecting people suffering a morally repugnant disease -without a sufficiently powerful disease to function as the referent of these images.
Gilman (1987), Syphilis iconography over time
August 1, 1496, the first visual representation of the syphilitic appeared in a broadside written by Theodoricus Ulsenius and illustrated by Albrecht Diirer
- portrayed as a victim of the signs of the zodiac, which determine his affliction. The syphilitic is seen as isolated, visually recognizable by his signs and symptoms, and sexually deviant
Enlightenment - image of the syphilitic shifts from male to female, and shift from victim to source of infection. Prostitute/ seductress as source of pollution
by the nineteenth-century “vice” has become “disease,” seduction has become infection
Gilman (1987), AIDS iconography over time
In a photograph that appeared in the New York Times on December 23, 1985, we see an image of the PWA as a patient isolated from the supposed act of healing (parallel to the images of the exemplary syphilitic). The sense of physical distance is palpable
1985 (and subsequently), the New York Times was full of articles on the anxiety of health workers treating people with AIDS.
This is a homosexual male, both victim and cause of his own pollution. Already feminized in the traditional view of his sexuality, the gay man can now also represent the conflation of the images of the male sufferer and the female source of suffering traditionally associated with syphilis.
association of the “AIDS victim” with the traditional iconography of melancholy is an extraordinarily powerful one; it reappeared as the first illustration for an update on AIDS in the popular scientific journal Discover in September 1986
But the Discover photograph not only draws the analogy with the despair of impending death. Through a broader analogy extended to the “general population,” which is seen to suffer from “unwarranted” AIDS phobia, it in- tends the PWA to function as a stand-in for the mental illness (read: fearful fantasy) of an entire nation
AIDS is perceived as endemic to cities, which have traditionally been seen as harborers of disease and degeneracy.33
Thus arises the seemingly natural association among three quite distinct groups perceived as corrupt city-dwellers: homosexuals, IV drug users, and Haitians. And purity lives where nature dominates: on the farm and in the small town
Gilman (1987), AIDS and race/ geography
Blacks were deemed to be at risk because of their perceived sexual difference- their “hypersexuality”-as well as their “sociopathic” use of drugs. Black sexuality, associated with images of sexually transmitted disease, became a category of marginalization, as it had in the past. But in the 1980s, after the intolerable state of blacks in this country was made visible by the civil rights movement in the ’60s and ’70s, it was no longer so easy to locate the source of disease among American blacks
Instead, the source of pollution was perceived to be foreign blacks, black Africans and Haitians, and thus American “liberal” sensibilities were assuaged even while speculations about the origin of AIDS continued to be determined by American racist ideology.
withdrawal of the “risk group” label from Haitians followed a period of severe persecution. To be Haitian and living in New York City meant that you were perceived as an AIDS “carrier.”
The pattern of infection in the US, where the disease existed only among marginal groups (including blacks), was understood as characterizing a later phase of the disease’s history. It was only in “higher” cultures, such as the United States, that the disease was limited to such specific groups as could be immediately and visually identifiable.
transmission of HIV in black Africa has its roots in the imposition of models of Western medicine. The status of Western medicine and its association with inoculation is so high that no medical treatment, even by indigenous medical practitioners, is considered complete without an injection.32 Due to the prohibitive cost of needles and syringes, blood is passed from patient to patient as the needle is used and reused. It is thus not the fantasized perverted nature of black sexuality that is at the core of the transmission of the disease in Africa
AIDS is popularly perceived in Europe as born in the USA
For the Soviets the geographic origin of the disease is also the US: the HIV virus was man-made by the biological warfare specialists at Fort Detrick, Maryland, in conjunction with the scientists at the CDC.
This attempt to place the blame for AIDS on the United States worked only until the spring of 1987, when the Soviets, in the climate of glasnost, admitted that they, too, had indigenous cases of the disease.
1985 and 1986, “orthodox” Soviet view was that homosexuality-and thus AIDS-was a
pathological reflex of the late forms of capitalism which would (and did) vanish once the Soviet state was created
Gilman (1987), Potency of AIDS stigma
permeated social categories ordinarily exempt from stigma. In 1985, two community school boards in Queens sued the New York City Board of Education in order to exclude a seven-year old child, diagnosed as having AIDS, from the school system
Gilman (1987), the psychological importance of stigma
It clearly defines the boundaries of pollution, limiting the risk to the homosexual (and those other groups now stigmatized), and thus confines heterosexuals’ fears about their own vulnerability
Gilman (1987), shifting public understandings of AIDS late 1980s
By the spring of 1987 the public understanding of AIDS as a disease not limited to specific marginal groups had begun to grow. The statement of Surgeon General C. Everett Koop in support of extending information about condoms, together with increased media attention to heterosexual transmission, meant that by March 1987 the majority of those tested in the public AIDS clinics in New York and San Francisco were heterosexuals.
However, shift -from male victim to female (outside limits of social respectability) as source of pollution - clearly repeating the history of the iconography of syphilis.
in a cartoon of mid-March 1987, J. D. Crowe of the San Diego Tribune depicted the source of heterosexual transmission as a group of prostitutes proffering death.
Fee, Krieger (1993), significance of historical study of AIDS
offers a complex and vivid example of the ways in which people create multiple, contested explanations of health and illness.
Fee, Krieger (1993), first of three clashing paradigms of AIDS
conceived of primarily as a “gay plague,” by analogy with the sudden, devastating epidemics of the past
epidemiologists struck by its seemingly exotic preference for young, homosexual men; they therefore searched for causes in the behaviors or “life-styles” common to gay men
looked for risk factors prevalent in this “risk group” and indicted life in the fast lane, including “promiscuity,” “poppers” (amyl nitrate), and anal sex.
researchers at first ignored the cases of AIDS that did not fit the gay plague model
however, shift to “4-H risk groups”: homosexuals, Haitians, hemophiliacs, and heroin addicts
In popular perception, all members of the identified risk groups were seen as potentially contagious; from there it was but a short step to perceive those populations as “responsible” for AIDS.
This in turn led to the prevalent media descriptions of the “innocent victims” of disease, such as hemophiliacs and children; by implication, the others were “guilty” culprits.
unmediated associations between homosexuality and disease that appeared in the declarations of rightwing ideologues, who lost no opportunity to castigate homosexuals in the name of “family values” and the “American way of life.”
In 1983, the identification of HIV, the AIDS virus, led to a new phase of the epidemic, in which AIDS was clearly characterized as an infectious disease.”
Once the virus was identified, scientists tended to lose interest in the social factors accompanying transmission. Theyinstead turned to laboratory studies of the virus
virus was perceived as something easy to catch; the idea that AIDS was caused by a virus, along with vague announcements about bodily fluids, may well have increased fears of casual transmission
many people in the United States simultaneously embraced scientific, traditional, and folk explanations of AIDS, with little sense of contradiction. Ideas of “magical contagion” led otherwise well-informed people to fear contact with AIDS patients. For example, one study found that most people would refuse to wear a sweater previously worn by an AIDS patient
scientific search for biomedical risk factors, agents, and other proximate causes of disease had failed to satisfy the broader need for ultimate explanations-the “why” and not just the “how” of disease causation.
Among health professionals, the identification of HIV seemed to clarify strategies for AIDS prevention. It shifted attention away from the early risk-group designations and highlighted the importance of risk behaviors, thus focusing attention on specific acts rather than on sexual identities.
Condoms advocated.
Opposed by right wing set against nonmarital sex.
Providing individuals with clean needles was problematic because many people perceived the distribution of needles and bleach as a possible encouragement of drug use.
Many African Americans were convinced that these programs were part of a long-standing, White-led genocidal policy against Blacks, and they called instead for drug treatment programs and jobs. By contrast, many conservatives simply wanted drug addicts thrown into jail.
Prevention methods to curtail blood transmission were similarly framed in individualistic terms. People were urged to refrain from donating blood if they had any reason to believe they were at risk for HIV infection; people needing blood were encouraged to store their own blood prior to surgery or to collect blood from family
and friends. Blood was now increasingly seen as an individual possession.
Ultimately, the identification of HIV and the discovery of a blood test for HIV antibodies made possible the traditional approach to infectious disease control - identification of those infected, followed by isolation, quarantine, or other societal action to cut off transmission - and led to battles over testing immigrants, blood donors, and individuals considered to be at risk.
From the biomedical and epidemiological point of view, if individuals knew their serostatus, they would more readily change behaviors
However, this logic ignored the complex power dynamics of sexual relationships. Did not consider the social reality of discrimination in health insurance, jobs, and housing that faced those diagnosed as HIV positive
also ignored the ethical problem that, in the early stages of the epidemic, no therapy was available; testing exposed the individual to considerable social risk while offering no medical benefit.
Fee, Krieger (1993), gay and lesbian communities’ activism
rejection of concept of ‘innocent’/ ‘guilty’ AIDS victims and divisions caused by categorisaiton of seropositive and seronegative
These communities had a recently formed, self-conscious sense of their social and political identity, forged in part out of a successful struggle with the medical establishment over the psychiatric definition of homosexuality as a pathological disorder.
The epidemiologists’ apparently neutral categories were perceived as an attempt to resurrect the earlier biomedical construction of homosexuality as a sickness
Identification of HIV
1983
Fee, Krieger (1993), second of three clashing paradigms of AIDS
In the second paradigm, AIDS was normalized as a chronic disease to be managed medically over the long term
predictions about the massive spread of AIDS throughout the entire US population-the threatened “heterosexual explosion”-had not been fulfilled. Indeed, statisticians were revising downward the early estimates of the number of HIVinfected persons.
Researchers and health care professionals shifted the focus of their concern from etiology to pathology and from prevention to potential therapies. The development of palliative treatments such as azidothymidine (AZT) for people with AIDS (and, later, for those who were HIV positive) placed new emphasis on health services, as reflected in the growing numbers of dedicated AIDS units for both inpatient and outpatient care
AIDS was becoming just another expensive disease, like cancer, with which the medical system could cope
When first conceived of as an infectious chronic disease, AIDS was likened to such diseases as tuberculosis and syphilis
Funding now flowed for studies of the natural history of AIDS, AIDS pathology, and clinical trials.
Few research dollars were expended on studies designed to improve prevention. The US Congress, for example, canceled two national surveys of sexual behaviour
Testing for HIV was now encouraged more as a means of drawing infected people into early treatment than as an incentive to modify behavior.
People with AIDS explored alternative therapies and unconventional drugs
Many rejected the exclusively tragic imagery of dying in favor of diverse representations of living with AIDS. Their work incorporated the voices, faces, and experiences of people with AIDS,
As AIDS touched every aspect of public life, from art to politics to sports, increasing popular awareness of the disease led to growing acceptance of people with AIDS. When the basketball star Magic Johnson announced he was HIV positive, he was wamily applauded for his honesty and bravery.
language of guilt was less often applied to people ill with AIDS, but the distinction between innocent and guilty “victims” lingered, as seen in the general hysteria over infected health care workers
Fee, Kreiger (1993), model of chronic disease
chronic diseases are debilitating and often fatal conditions that are slow to develop, persist for many years, and require long-term management
Research focuses on disease mechanisms, usually at the cellular level, and increasingly concentrates on genetic determinants. Based on this understanding of disease, health interventions most commonly emphasize screening, early detection, and treatment, not primary prevention
Fee, Krieger (1993), Lack of med knowledge about AIDS
One study found that more than 80% of a national sample of primary care physicians said lacked info about AIDS
Surveys found that most people obtained information about AIDS from the mass media, family, and friends, and that fewer than 10% had ever discussed the disease with their physician.
Fee, Kreiger (1993), successes of AIDS activism
Reflecting their success and also the growing understanding of the progression of HIV disease, the Centers for Disease Control revised its diagnostic definition of AIDS in 1991 to include T-cell counts and, in 1992, to include cervical cancer and pulmonary tuberculosis among HIV-associated diseases.
Food and Drug Administration agreed to streamline its procedures for drug approval.
Reflecting the clash between the first and second paradigms of AIDS, other AIDS activists questioned the singleminded focus on treatment and emphasized prevention.
AIDS activists initially forced a major shift in the old public health approach to infectious disease control: for example, constraints on or quarantine of those infected.
political strength of the gay movement engendered within public health circles a new sensitivity to issues of stigma
Fee, Krieger (1993), critique of chronic disease model
In accepting the chronic disease model’s emphasis on pathology and treatment, many scientists and health care professionals have lost sight of the fact that AIDS is both infectious and preventable
Although the incidence rates of a few cancers (e.g., stomach cancer) have declined, often for unknown reasons, the rates for many other types of cancer are stable or increasing.
While preventive interventions based on the chronic disease model have stressed individually oriented dietary and behavioral modifications, it is unclear how much health behaviors have really altered.
Fee, Krieger (1993), critique of infectious disease model
reputation for success in controlling epidemics was overinflated. Historians have argued that much of the decline in infectious diseases predates scientific medicine
Fee, Krieger (1993), critique of biomedical models
Ultimately, the biomedical model embodies an approach to analyzing disease that is fundamentally individualistic and sanctions only the physicians’ or scientists’ point ofview. Profoundly ahistorical, it contains within itself a dichotomy between the biological individual and the social community, and then it ignores the latter
The only preventive actions seriously suggested are those that can be implemented by solo individuals
these attitudes implicitly accept social inequalities in health and fail to challenge the social production of disease.
Fee, Krieger (1993) third of three clashing paradigms of AIDS
AIDS as a Colletive, Chromic Infectious Disease and Persistent Pandemic
AIDS is, in essence, a social disease
public health must initiate two-way learning process
One study study found that injection drug users were more influenced by their material circumstances, such as access to clean needles and a private setting for drug use, thanby their perceptions of risk of contracting AIDS from dirty needles.
Recognizing the importance of basing health education campaigns on what people really believe, researchers have begun to document the plurality of popular conceptions about health and disease causation in order to make AIDS education materials more compatible with people’s own modes of understanding.
Health education campaigns within the gay community have been creative-and controversial-in attempting to eroticize safer sex
Fee, Krieger (1993), AIDS in Central African, Latin American and Southeast Asian countries
IDS can be characterized neither as a peculiarly gay plague nor as a chronic disease; most people with AIDS are heterosexual and few can afford the luxury of extended treatment
Berridge (1992), Importance of AIDS for status of History
Historians have, until recently, played a relatively small role in researching the history of post-war science and medicine in its policy context.
The advent of AIDS as a scientific, medical and policy issue - and also as an epidemic seen to have historical significance - has brought with it a reassessment of the role and significance of historical work on the post-war period.
Berridge (1992), early historical input on AIDS
focused primarily on historical parallels from previous centuries or on the history of the regulation of sexually transmitted diseases
Berridge (1992), more recent historical input into AIDS
AIDS itself has emerged as a historic occurrence and a subject for historical investigation. Grmek in his History of AIDS has brilliantly elucidated the pre-history of AIDS as a disease and assessed competing explanations of its origin
Berridge and Strong (1991), Overview of AIDS in Britain, 1980s
years from 1981 to 1986 were a time of surprise and initial horror.’ This period saw the apparently sudden outbreak of the disease in several widely differing groups, rapidly gathering public alarm, growing stigmatization and, on the policy side, relatively little official action. Behind the scenes, however, there was considerable openness to new actors, the establishment of new sorts of alliance and a good deal of policy development from below.
This phase was succeeded in 1986-7 by a brief period of war-time emergency in which politicians publicly and dramatically intervened, their actions being reinforced by a voluntary, if temporary, mobilization of the mass media. AIDS was officially established as a high level national emergency
from 1987 onwards, these two initial phases have been followed by a third phase of normalization of the disease and of the public reaction to it.
Berridge and Strong (1991) - chronic or infectious?
AIDS has become another chronic disease
Berridge and Strong (1991), differences between AIDS in UK and AIDS in US
disease appeared earlier there, has been on a far greater scale and has generated considerably more public controversy.
Berridge and Strong (1991) on material on AIDS composed in early years of the crisis -
Much of the material under review was written during the early years of the epidemic, a fact which gives the great part of it a real sense of crisis and urgency
No haemophiliacs or injecting drug users have openly joined the academic fray, but gay men have played a prominent role. Much of the work aims to contribute directly to policy and some of it is passionately and personally committed.
Berridge and Strong (1991), early historical input on AIDS
Initially, AIDS was a ‘new’ policy area where established interests and policy lines had not yet ossified. In an open situation, history could play a practical rather than symbolic role.
The initial input focused on three broad areas; the role of epidemic disease in past societies, in particular the association between disease and ‘moral panic’, or disease and stigmatized minorities; the historical record, in particular the tradition of voluntarism in the area of sexually transmitted diseases, notably the controversies around the Contagious Diseases Acts in Britain in the nineteenth century; and more general questions of public health policy and the means of carrying them out, such as quarantine or notification, thus contributing to the classic debate between the common good and individual rights
Historians of cholera and other epidemics found themselves catapulted into a round of AIDS conferences which actively sought to hear the ‘lesson of history’. The annual international AIDS conference, a jamboree of mammoth proportions, developed a history strand
In Britain, the preceding historical interests of two key actors, Professor Michael Adler at the Middlesex Hospital and Sir Donald Acheson, Chief Medical Officer at the Department of Health, ensured that the historical record was brought into the policy debates. The reports of the Chief Medical Officer in the early AIDS years were consciously historical
In the British context at least, the historical arguments appear to have had some degree of policy impact. Roy Porter’s editorial in the British Medical Journal in 1986 headlined ‘History says no to the policeman’s response to AIDS’, attracted a barrage of interest.5 His type of argument, drawing on analogies from the history of public health in relation to civil liberties and on historical examples of the control of sexually transmitted diseases, also entered into the policy area.
Sir Donald Achcson in his evidence to the House of Commons Social Services Committee enquiry into AIDS in 1987 cited the historical record as a prime reason for avoiding a punitive response to AIDS.
Berridge and Strong (1991), historical input in different countries
In different national contexts the ‘lesson of history’ had a differential impact. In the United States, for example, debate around the issues of compulsion and confidentiality arose from differing historical perspectives. The ‘lesson of history’ was mediated by different national cultures
Berridge and Strong (1991), shift in history’s contribution into AIDS
AIDS is no longer in many senses an open policy area. The difference is conceptualized in the contrast between the Millbank collection in 1986, full of historical parallels, and the Daedalus issue in 1989 where only one article, by Charles Rosenberg, makes direct reference to the historical perspective.
Rosenberg’s piece, too, is distinctly post-heroic in tone. It notes the range and stages of policy choices in an epidemic
The historical input mirrors the normalization of AIDS itself. Chronic, not epidemic, disease is the focus.
Berridge and Strong (1991), criticisms of historians’ initial attempts to be relevant to AIDS crisis
Whiggish assumption that there was indeed a ‘lesson of history’
implied history was incontrovertible ‘fact’, rather than a mass of differing interpretations
Randy Shilts’s And the Band Played On (Berridge and Strong’s account
catalogue of blame—for the deaths of many who, he argues, died unnecessarily of delay and prejudice. He points the finger at the US media and public in general, little concerned about a ‘gay disease’; and at the Reagan administration, concerned only with tax cuts, not health funding. But in particular, he castigates two communities—the medicoscientific one, caught up in internal rivalries and politicking to the degree that advancement of reputations appeared more important than a life or death race against disease; and, most controversially, sections of the gay community itself, whose reaction was based on the need to defend the gains of the 1970s, in particular the ideology of sexual liberation, rather than to combat the disease. Gay political power in San Francisco initially ensured the continuance of the virus-spreading bath houses instead of propagating the notion of safe sex.
Berridge and Strong (1991), AIDS and sociology
bulk of social science research funding has gone to sociology
large number of primarily quantitative projects have been funded by research councils, government departments and charities
most of the research has been focused on practical rather than sociological problems. AIDS has brought a revival of positivist social science; and conceptual development has played a very minor part
main empirical focus has been the social dynamics of transmission of both the virus and health education
Berridge and Strong (1991), criticisms of cultural studies work on AIDS
Many authors write as if labelling and metaphor were diseases which could somehow be cured through appropriate linguistic therapy. Most sociologists, however, would hold that these features arc intrinsic to language use.
often surprisingly little reference to the considerable body of sociological research into stigma and the natural history of social problems and, conversely, far too much stress on the fragile notion of ‘moral panic’.
The idea needs careful separation from genuine panic and fear
Dennis Altman’s AIDS and the New Puritanism (1986) (Berridge and Strong’s account)
- consciously written as a ‘contemporary history’, combining both sociological and historical perspectives
- particularly good at setting the gay response to AIDS in its immediate historical context. He shows, for example, the way in which the establishment of Gay Men’s Health Crisis in New York built on a decade of gay organization and pre-existing gay health networks
- notes the positive as well as negative effects AIDS has had on the gay community: the way it has created a new professional gay cadre based on expertise rather than movement experience or popular representation—a fact which has led to a much greater degree of institutional recognition.
- comments about research are also perceptive: the way, for example, gay social scientists have used research to work through their own feelings; or the way AIDS has served to develop the links between commerce and scientific research
Fox, Klein, Day (account of Berridge and Strong)
first article to challenge the conventional activist line
Neither right-wing ideology nor public opinion had much effect. Much noise was made, particularly in the USA, but policy, as in almost all health arenas, was still dominated by the traditional, liberal, bio-medical elite
Berridge and Strong (1991), conventional activist line on AIDS crisis
(to be found in both Shilts and Weeks) AIDS was a heaven-sent opportunity for the populist New Right governments of the 1980s to roll back the moral frontier. On this thesis, national action was scandalously slow because governments did not care so long as merely gay men were affected. Serious intervention occurred only when the threat to the heterosexual population became clear.
Berridge and Strong view on Fox, Klein, Day
underestimate the openness and fluidity of AIDS policy-making in the early stages of the epidemic.
What distinguishes history from other disciplines in approach to AIDS? (Berridge and Strong, 1991)
Three broad areas:
- the use of a chronological approach
- a sense of continuity as well as change
- within an overall chronology, a synthetic ability to interweave different levels of interpretation.
Rosenberg (1989), modern use of term ‘epidemic’
Use the term in a variety of ways, most of them metaphorical, moving it further and further from its emotional roots in specific past events.
In the mass media every day, we hear of “epidemics” of alcoholism
intent is clear enough: to clothe certain undesirable yet blandly tolerated social phenomena in the emotional urgency associated with a “real” epidemic
Rosenberg (1989), defining aspects of epidemics
- fear and sudden widespread death
- episodic quality. Event, not a trend
immediate and widespread response. It is highly visible - Thus, as a social phenomenon, an epidemic has a dramaturgic form
- takes on the quality of pageant, mobilizing communities to act out proprietory rituals that incorporate and reaffirm fundamental social values and modes of understanding. Thus, illuminate fundamental patterns of social value and institutional practice
Rosenberg (1989) epidemic Act I: Progressive Revelation
most communities are slow to accept and acknowledge an epidemic.
to admit the presence of an epidemic disease was to risk social dissolution
Only when the presence of an epidemic becomes unavoidable is there public admission of its existence
Rosenberg (1989) epidemic Act II: Managing Randomness
Collective agreement on explanatory framework, in which epidemic’s dismaying arbitrariness may be managed, may be seen as the inevitable second stage in any epidemic
For most previous centuries that framework was moral and transcendent; the epidemic had to be understood primarily in terms of man’s relationship to God
Since at least the sixteenth century, however, such spiritual assumptions have always coexisted with, and gradually yielded in emphasis to, more secular and mechanistic styles of explanation
When threatened with an epidemic, most men and women seek rational understanding of the phenomenon in terms that promise control, often by minimizing their own sense of vulnerability.
Such consolatory schemes have always centered on explaining the differential susceptibility of particular individuals
Particularly important was belief in the connection of volition, responsibility, and susceptibility
nineteenth-century debates about the cause of epi demics were in actuality rather more nuanced. Epidemics did tend, for example, to be associated with place of residence and occupation as well as behavior. And environmentalist, and thus determinist and morally exculpating, implications were there to be drawn
layman’s almost universal association of epidemic with contagious disease played a parallel role. At least a presumed knowledge of the epidemic’s mode of transmission could provide a measure of understanding and thus promise control
Rosenberg (1989), epidemic Act II, Negotiating Public Response
One of the defining characteristics of an epidemic is in fact the pressure it generates for decisive and visible community response.
An epidemic might in this sense be likened to a trial, with policy choices constituting the possible verdicts
the imposition of a quarantine, let us say, or the burning of tar to clear an infected atmosphere, the gathering of men and women in churches for days of fasting and prayer, all play a similar role - the visible acting out of community solidarity.
These collective rituals affirm belief - whether in religion, in rationalistic pathology, or in some combination of the two - while those beliefs promise a measure of control over an intractable reality.
picture of a consistent if occasionally awkward coexistence between religious and rationalistic or mechanistic styles of thought was characteristic of mid-nineteenth century Anglo-American society
The poor and socially marginal have historically been labeled as the disproportionately likely victims of epidemic illness, and they have been traditionally the objects of public-health policy
Rosenberg (1989), How do epidemics usually end?
With a whimper, not a bang. Susceptible individuals flee, die, or recover, and incidence of the disease gradually declines.
But it also provides an implicit moral structure that can be imposed as an epilogue.
Historians and policymakers concerned with epidemics tend to look backward and ask what “lasting impact” particular incidents have had and what “lessons” have been learned. Have the dead died in vain?
Epidemics have always provided occasion for retrospective moral judgment
Rosenberg (1989), AIDS shattering preconceptions
- we seem not to have conquered infectious disease
- Death is not associated exclusively with a particular and advanced age
Rosenberg (1989), In what ways is AIDS similar to the traditional phenomenon of the ‘epidemic’?
- gradual and grudging acceptance of the epidemic as reality, and the resentment expressed toward bringers of bad tidings, the physicians and activists who demand a response
- coping with randomness has provided an occasion for reaffirming the social values of the majority, for blaming victims
- Mixture of biological mechanism invested with imposed moral meaning
- search for meaning. Most Americans find reassurance in faith in the laboratory and its products; they see AIDS as a time-bound artifact of that transitional period between the discovery of this new ill and the announcement of its cure. Others, of course, see its primary meaning in the realm of morality and traditional piety.
- Many of us impose multiple frames of meaning. majority of Americans retain their faith in the laboratory but at the same time believe that AIDS points variously to truths about government, the political process, and personal morality
- Reminds us of reality of our mortality + the anxiety of indeterminacy
Rosenberg (1989), two categories of disease
- diseases whose prevention demands individual behavioral change, like syphilis, AIDS, and lung cancer
- diseases that can be prevented by collective policy commitments, like typhoid fever
Rosenberg (1989), difficulties posed by AIDS
AIDS reminds us of the difficulty of inducing changes in behavior and thus of the intrinsic complexity of the decisions facing local governments and public-health authorities
has forcefully reminded us of the difficulty of providing adequate care for the chronically ill in a system oriented dispropor tionately toward acute intervention
Rosenberg (1989), similarities between AIDS public health campaign and previous ones
- during first decades of 20th C, public health workers who urged the use of condoms and prophylactic kits to prevent syphilis met some of the same kind of opposition their successors in the 1980s faced when they advocated distributing sterile needles to intravenous drug users. In both cases debate turned on distinctions between “deserving” and “innocent” victims.
In the case of syphilis, the presumed innocents being the wives of erring husbands and their infants; in the case of AIDS, the recipients of contaminated blood or the offspring of infected mother
Rosenberg (1989), ritual
AIDS reminds us of need for ritual, even in fragmented modern soc
It is a need that is recognized:
- in the AIDS memorial patchwork quilt that has recently circulated throughout the United States
- public distribution of condoms in public spaces
- calling of conferences graced by individuals representing various agencies of social authority
Rosenberg (1989), in what ways is AIDS different from traditional epidemic?
- rapidity of its geographic spread
- rapidity of its identification as a unified clinical entity
- has existed at several levels simultaneously, mediated by the at first uninterested, then erratically attentive media
- novel capacities of late 20th-C med. Providing substan tive cognitive change during the course of an ongoing epidemic, the laboratory and its intellectual products have played a novel role in the narrative structure of our encounter with AIDS. Without the option of serological screening, for example, the intense and multifaceted debate over the imposition of such tests could hardly have been framed. Without knowledge of an infectious agent, the options for public policy would necessarily have been defined differently
- institutional complexity of modern US society
Rosenberg (1989), AIDS as Postmodern Epidemic
role of the media and social scientists in our contemplating ourselves
AIDS has underlined the inadequacy of any one-dimensional approach to disease, either the social constructionist or the more conventional mechanistically oriented perspective
AIDS is socially constructed (as society perceives and frames the phenomenon, blames victims, and laboriously negotiates response) yet at the same time fits nicely into a one-dimensionally reductionist and biologically based model of disease.
Fee, Fox (1989), AIDS historiography compared to that of other diseases
has stimulated more interest in history than any other disease of modern times
Fee, Fox (1989), historians’ initial reaction to AIDS
- early 1980s, Historians, like most other people who paid attention to AIDS, addressed it as a startling discontinuity with the (recent) past
- analogies with time-limited visitations of diseases of more distant past (paper’s authors of also adopted this perspective
- insensitivity of governments, socially and morally repressive attitudes to sexual behavior, the tendency of those in power to blame the poor or other disenfranchised groups for harboring dread diseases, and the potential threat of quarantines or other attacks on individual rights
Fee, Fox (1989), context of time at which AIDS struck
- disease allowed some journalists and politicians a ready opportunity to express/ resurrect fear and resentment toward newly visible and assertive gay communities
- struck at the time when containing health costs had become a major objective of governments in the United States and western Europe, and these governments were reluctant to recognize, let alone deal with, the potentially devastating costs of coping with a new epidemic
Fee, Fox (1989), alarmists vs advocates of equanimity
alarmists - found analogies to the present in the great epidemics of infectious disease. urged adoption of what had become the classic repertoire of public health responses to epidemics: enhanced surveillance, mobilization of medical resources, and increased research.
Advocates of equanimity - diff historical parallels. Recalled times in the past when exaggeration ofthe severity of an outbreak of infectious disease had led to the deflection of resources from areas of greater need, the exchange of individual rights for an illusory collective good, and diminished repute for the enterprise of public health. E.g. flu non-epidemic of 1976.
Fee, Fox (1989), selective use of historical analogy
most of those who used historical analogies avoided the most pertinent aspects of the histories of venereal disease and tuberculosis, emphasizing issues of surveillance and personal control policy and ignoring the problems of housing, long-term care, public education and the financing of palliative care for people suffering from chronic infections
The history of the two leading chronic infectious diseases of modern times was used to understand a very different situation, a polity threatened by devastating plague
Fee, Fox (1989), explanation for adopting/ maintaining belief that AIDS = discontinuity
- insistence on discontinuity was useful, politically
- psychological alternative is devastating. Difficulty of admitting that the threat of disease is not transient
- For public officials, health industry leaders and physicians, the idea that AIDS would become another killer chronic disease unpalatable bc adds to the already overwhelming financial and organizational problems of health policy
Fee, Fox (1989), AIDS by the mid-1980s
AIDS was institutionalized within academic medicine and the medical care establishment.
Fee, Fox (1989) view on most accurate framework in which to understand AIDS
we are not dealing with a brief, time-limited epidemic but with a long, slow, process more analogous to cancer than to cholera
Shift towards acceptance of the Fee and Fox model of AIDS
presented earlier version of argument about AIDS as chronic in March 1989, generating considerable distress and skepticism
Three months later, by June 1989, the idea was widely accepted
Samuel Broder, head of the National Cancer Institute, publicly declared that AIDS was a chronic disease and cancer the appropriate analogue for therapy in his speech at the final plenary session of the international AIDS meeting in Montreal
Fee, Fox (1989), practical approaches to managing AIDS late 1980s
relatively little talk about quarantine, isolation, and mass testing for the disease. The immediate panicked reactions to the disease have been replaced by medical management
Fee, Fox (1989), historiographical shift
rapidly accumulating body of secondary sources in contemporary history has had important impact
cumulative weight of these publications has made obsolete history-by-analogy and, implicitly, challenged the assumptions about discontinuity and the pertinence of the classic plague model on which it was based
These rich secondary sources make plain the continuity between the HIV epidemic and the recent past
(Most of the people who have written these histories have little or no interest in historiography)
Fee, Fox (1989), AIDS and social constructivism
AIDS is a particularly good example of the social construction of disease. Oppenheimer, for example, shows how the first pathological evidence was constructed through early epidemiological accounts as GRID, gay-related immunodeficiency disease, despite published reports of heterosexual intravenous-drug using patients with the new syndrome.21 Definitions of disease between 1981 and 1987 focused on a definition of convenience, agreed upon by the Centers for Disease Control and the World Health Organization, that stressed the point at which specific secondary infections were recognized. From 1987, the definition of HIV-related disease brought the conception of disease as close as possible to the point of infection.
Fee, Fox (1989), AIDS and ‘progress’
Many of the debates and much of the anger between gay activists and scientists revolve around the idea of scientific progress or the lack of it: the accusation on the part of many activists that scientists have not lived up to the promises of progress and the defensive reaction from scientists that an enormous amount has been learned about the disease in the time available. Most recently, this debate was played out at the international AIDS meeting in Montreal in June 1989
Pressman (1990) critique of literary analysis/ analystis
Literary analysis alone cannot give insight into the larger process by which social mores and beliefs change, a question that is at the center of such endeavours
Sontag, for example, exhibits a quaint naivete in her trust of scientific “facts” to liberate us from erroneous or repugnant beliefs
Sontag and others see in AIDS the high-water mark of sexual liberation, a reinforcement of a broad er return to convention, with the implication being that gay liberation ultimately slammed the door on heterosexuals pursuing similar freedoms. This may be premature statement/ an unfair distortion
Gilman’s work, even on its own terms, is less successful than Sontag’s. His reliance upon a static sociopsychoanalytic model decontextualizes the artefacts under study, leading Gilman to forced readings and, ultimately, ahistoricism.
The cultural meaning of sexually transmitted diseases has changed over time and place It is these differences that need further elucidation
Pressman (1990) - overview of historians’ criticisms of process of science
Treichler analyzes the descriptive categories used to tabulate patients in the early case reports and finds that the belief in the homosexual origins of the disease led researchers to shunt aside contrary cases, such as those involving women, into the rubric of “Other.’
Oppenheimer establishes that the first published accounts of the mysterious syndrome downplayed causal models based on infectious diseases, such as a virus or germ, in favour of models that underscored the hazards of a “promiscuous” gay “lifestyle.”
Not yet understood is the role played by the concentration of medical attention in the late 1970s upon the sexually transmitted diseases of gays, when the general medical community first became aware of the sexual activities of homosexuals.
as Oppenheimer narrates, when the first cases of AIDS appeared in ‘innocent” children - the moment when the illness was first brought to national attention -prominent medical authorities responded, reflexively, by explaining to the public that the disease can be contracted through casual, innocent contact
The net result was an immediate firestorm of public hysteria and, later, public distrust of physicians when they backtracked on the issue of transmissibility
Pressman (1990), differences between AIDS and other infectious diseases
Unlike Parran’s model of syphilis, an individual with AIDS will find it difficult to claim to have contracted the disease i’innocently.” Explanations such as accidental exposure to needle sticks, blood transfusion and hemophilia are all matters of public record
Fee on syphilis (Pressman, 1990)
Fee’s case study of Baltimore mid-20th C reveals that the syphilis campaign was used as a basis for laws against sodomy, and for J. Edgar Hoover’s and others’ attempts at a total ‘supression of sexual promiscuity” (p. 134). Post-AIDS legislation targeted at bathhouses, ses clubs, adult theaters, and prostitution no doubt reflects some of this legacy
Pressman (1990), positive impact of AIDS on gay community
AIDS epidemic is historically unusual in that it befell a preexisting, well-defined lobby group already in motion
as Dennis Altman illustrates:
gay concerns have found an unprecedented national visibility, an issue around which to congeal an increasingly powerful political voice.
raising of money for “wars” against disease through civic events such as walk-a-thons and philanthropic auctions is a peculiarly American tradition, a process that helped to incorporate gay awareness into many a local community
Pressman (1990), impact of gay community on relationship between scientists and the public
- experimental protocols no longer are left to the full control of investigators
- no longer is access to experimental drugs fully in the control of the FDA
Pressman (1990), lessons of AIDS history
- we must understand the subtle process by which slow-moving social and cultural beliefs dynamically interact with the fast-paced movement of laboratory knowledge
- historian too is caught within this larger, complex process by which knowledge and society interact
Scandlyn (2000), acute illnesses
characterized by a sudden onset, obvious signs and symptoms, and some limitation of normal function
In the United States, metaphors for acute illness arise from the arena of war: viruses invade, bacteria attack, and parasites infest
Scandlyn (2000), Chronic illnesses
may arise from an acute episode that does not resolve to full health—for example, a diabetic coma. The course of a chronic illness is uncertain and unlimited in time, usually characterized by alternating periods of acute crisis and remission
Treatment is directed at relieving symptoms and slowing degeneration, not effecting cure
Metaphors for chronic illness are drawn from the language of business: symptoms are managed, crises are averted, support systems are organized, and regimens are designed. Whereas the battle against acute illness is dramatic and heroic, the management of chronic illness, despite its complexity, is banal
Scandlyn (2000), two types of AIDS on international level
chronic AIDS in the Western world, where resources are available for treatment with zidovudine and other drugs
acute AIDS in the developing world, where there are no funds for such treatments
Scandlyn (2000), consequences of shift to AIDS as chronic illness on national level
- shift in the priority it receives in national health policy and a growing inequity in how resources for its treatment are allocated among the population
- its power as a metaphor for evil is diminished
- Most chronic illnesses carry a stigma
- living with a chronic disease requires a different view of the self and the meaning of the illness and one’s life. When AIDS was an acute illness, the diagnosis was delivered as a death sentence. Chronic and life-threatening illnesses challenge the view of life as linear, consisting of continuity and order
- responsibility for all aspects of management—physical, mental, and social—increasingly falls on the shoulders of those who have the illness. In the absence of a crisis, it is easy to forget that people with an illness are still working hard to care for themselves
Scandlyn (2000), When was control of AIDS given high priority from public health officials and govt agencies?
once transmission to women, children, and heterosexual men was identified
Political activity by gay men, most of whom were white, deliberately played on fears of virulence and heterosexual transmission and was effective in securing government support for research and treatment
