The Encyclopedia of AIDS: A Social, Political, Cultural and Scientific Record of the HIV Epidemic
By Raymond A. Smith
Penguin Putnam Publishers, 2001; 782 pages, $25.00
As the editor of Body Positive, I am very pleased to have the opportunity to introduce my edited volume, The Encyclopedia of AIDS: A Social, Political, Cultural and Scientific Record of the HIV Epidemic. Originally published in hardcover in late 1998 by Fitzroy Dearborn Publishers, the paperback version is now available in bookstores and on-line from Penguin Putnam Publishers. While the actual contents of the Encyclopedia remain the same in the paperback as in the hardcover, the paperback includes a comprehensive update on major developments in the epidemic from summer 1998 to summer 2000.
The Encyclopedia proceeds from the premise that, first and foremost, AIDS has been a personal hardship for millions of people throughout the world -- both those who have suffered with and died from HIV infection, as well as those who struggle with it still. It is these individuals who have borne the brunt of the ongoing AIDS epidemic, often with inspiring dignity and courage.
In addition to being a personal hardship, however, AIDS has proven to be a social challenge, a cultural catharsis, a political quagmire and a scientific puzzle. Perhaps more that any other threat to the public health in modern times, the AIDS epidemic has entangled not only individuals but also families and friends, cultures and communities, cities and nations throughout the world. It has cut across race and ethnicity, class and education, age and religion, gender and sexual orientation, challenging the compassion and ingenuity of humankind at every turn.
Because of the extraordinary sweep of the epidemic, tens of thousands of specialized works have been published about the social, political, cultural and scientific dimensions of AIDS and its causative agent, the Human Immunodeficiency Virus (HIV). Yet, previously, no single volume had ever sought to systematically organize, synthesize and contextualize this enormous body of information for a general readership. The Encyclopedia of AIDS is the first reference work to undertake such a task by covering all major aspects of the global HIV/AIDS crisis.
Structure of the Encyclopedia of AIDS
The enormity and complexity of the ongoing HIV/AIDS epidemic is such that this work might have been 10 volumes rather than one, and included 2,500 entries rather than the roughly 250 it contains. Inevitably, however, even the most extensive and exhaustive reference work would be outdated to some degree as soon as it was published, given the rapidly changing state of scientific knowledge as well as new developments in the social, political and cultural dimensions of the epidemic.
Thus, the construction of the Encyclopedia of AIDS posed several challenges: to cover a topic of extraordinary magnitude within the bounds of a ready-reference, single-volume format; to render extremely complex subjects accessible to a wide range of readers without oversimplification; and to produce a volume that would continue to be of value for several years after its initial publication. To meet these challenges, the Encyclopedia of AIDS approaches the AIDS epidemic as a historical phenomenon unto itself, the broad profiles of which can be captured even if all its details cannot be spelled out in such a limited space. Recognizing that "state-of-the-art" information about HIV/AIDS will forever be a moving target better left to periodicals and on-line resources, the Encyclopedia focuses instead on providing a record of the epidemic, particularly its crucial first 15 years.
In keeping with this approach, the Encyclopedia takes as its temporal starting point the summer of 1981, when the first cases of unexplained immune deficiency began to be identified among a handful of gay men in the United States. The Encyclopedia continues its coverage through the summer of 1996, when the class of potent antiviral medications called protease inhibitors entered public consciousness, raising the first real hopes that HIV might someday be defeated. While the AIDS epidemic was influenced by many events prior to the summer of 1981, and the summer of 1996 by no means signalled the epidemic's end, these two events represent major historical markers in the progress of the epidemic. Of course, many developments and precedents from prior to the summer of 1981 are also discussed, some stretching back decades or centuries. Likewise, a significant number of entries include some information drawn from sources published after 1996, particularly in the Update.
Using the Encyclopedia of AIDS
As a general reference work, the Encyclopedia of AIDS is intended to be a first step for general readers seeking information about HIV/AIDS as well as for specialists wishing to learn more about topics outside their areas of expertise. It is not a guide to specific medical or legal issues; those seeking such advice are advised to speak to an appropriate professional.
Within the Encyclopedia, for those seeking information beyond what is offered in any individual article, each entry includes a listing of Related Entries within the Encyclopedia and suggestions for English-language Further Readings. The contents of the Encyclopedia of AIDS can be organized into eight broad domains: Basic Science and Epidemiology; Transmission and Prevention; Pathology and Treatment; Impacted Populations; Government and Activism; Policy and Law; Culture and Society; and The Global Epidemic. The more than 250 entries in the main body of the Encyclopedia are listed alphabetically. The headings of entries were generally chosen to reflect the word or words that general readers would be most likely to look up, and also to afford as much symmetry as possible with similar or related entries. Nonetheless, many subjects are not covered under their own headings but rather as part of larger entries; thus, readers are strongly encouraged to make maximum use of the Index at the back of the Encyclopedia.
The entries have been written by nearly 175 contributors from more than a dozen countries on six continents. Collectively, the contributors represent many of the finest colleges and universities, research institutes, government agencies, community-based organizations, activist groups and other institutions involved with combating the HIV/AIDS epidemic. In order for the Encyclopedia of AIDS to emerge as a single, coherent entity which would be of maximum use to readers, all contributors were asked to write their entries from the perspective of the "mainstream consensus" that has emerged over the last 15 years regarding the causes and nature of the AIDS epidemic. While it is difficult to precisely quantify this mainstream consensus, its cornerstone is that HIV is a naturally occurring (rather than human-made) virus and that HIV is the principal cause of AIDS (although certain co-factors may exist). Well into the second decade of the epidemic, some scientists and others continue to question the extraordinary volume of evidence that supports this mainstream consensus. While such dissention can play a useful role in the construction of scientific knowledge, it was nonetheless felt that as a general reference work, this volume should reflect the facts about HIV/AIDS as most commonly agreed upon throughout the world. Contributors were asked to note when certain facts are generally considered to be speculative or conjectural within the mainstream consensus.
Similarly, authors were also asked to avoid writing entries that indulge in polemics or advocate one point of view to the exclusion of all others. Although contributors were asked to approach their entries from within the bounds of scholarly objectivity, most entries nonetheless do, to some degree, reflect the disciplinary, theoretical and ideological perspectives of their authors.
On a topic as important and politically charged as HIV/AIDS, fair-minded people can and do disagree on a multitude of issues. Nonetheless, we hope, and believe, that all of the most crucial dimensions of the HIV/AIDS epidemic between 1981 and 1996 have at least been touched upon.
Below are a selection of excerpts from entries in the Encyclopedia of AIDS.
Some prominent actors and athletes have made disclosures about their diagnoses and have participated in advocacy programs for AIDS education and political attention, often to great effect. Other celebrities, by contrast, have gone to their graves without acknowledging that they have AIDS or made efforts to conceal their illness as long as possible. Some commentators have condemned this secrecy and deception as working against the creation of the social climate necessary for an open and honest confrontation with the epidemic. By reason of their celebrity, then, some people feel more sharply the individual responsibility to disclose their HIV status. -- by Timothy F. Murphy
In the United States and in other nations bounded by the traditions of Western liberalism, ethical considerations, pragmatic concerns and efforts on the part of AIDS service organizations have influenced public health strategies that control the spread of HIV infection. These strategies may be defined as voluntaristic, in that they stress mass education, counseling and respect for privacy. Indeed, both in the United States and elsewhere a paradigm of what might be termed "HIV exceptionalism," or special treatment for HIV as opposed to other infectious diseases, has dominated public health policy. -- by Ronald Bayer
The issues associated with progressive HIV infection in a parent are particularly complex as each different stage of HIV illness -- diagnosis, illness progression, late-stage illness, death and family reconfiguration -- presents a different challenge. Upon diagnosis and often throughout the course of illness, parents must confront issues of disclosure of their HIV status to children, adolescents and extended family. They also need to plan for the placement of children after parental death. With progression of parental HIV illness, children and teenagers witness the physical and mental deterioration of their parent and are often forced to cope with these changes in the absence of clear information about their parent's health status. -- by Jennifer F. Havens and Claude Ann Mellins
In addition to pointing out the silences on women and AIDS in every aspect of the epidemic, feminist critics argued that when constructions of women did actually appear in AIDS discourse, women were often represented as deviants. In line with AIDS criticism that challenges the problematic imagery of gay men and people of color as "guilty" and "contaminated," feminist critics specifically looked at the gendered and racialized representations of women as prostitutes and "bad" mothers. -- by Katie Hogan
Having waited so long to treat HIV/AIDS seriously, Hollywood is still having to catch up with films made elsewhere in which people live with, rather than die from, AIDS. However, non-mainstream films have begun to present AIDS in terms other than of death and dying. Christopher Ashley's Jeffrey (Working Man Films, 1995), based on Paul Rudnick's play of the same title, tackles the issue of HIV seronegativity in a light-heartedly serious manner to drive home its message that gay men need to hate AIDS rather than their lives and their sexuality. Another controversial film with an AIDS plot line, Larry Clark's Kids (Excalibur Films, 1995), paints a disturbing portrait of the urban young for whom HIV seropositivity is at best a matter of indifference and at worst a badge of honor. -- by Kevin J. Harty
The AIDS crisis also mobilized gay men and lesbians who had previously refrained from participating in the gay rights movement. The newly mobilized were more likely to be previously closeted, middle class, white and male; their newfound activism highlighted the tensions within the movement, raising old questions regarding gender, racial and economic bias within the movement. These tensions even occurred in liberationist organizations like ACT UP, where frustrated lesbians broke off to form the Lesbian Avengers. -- by Donald P. Haider-Markel
Harm reduction stands in contrast to positions such as deterrence, abstinence, or the "war on drugs." The latter views, most notably promoted in the United States, reject any and all illegal drug use, even while tolerating legal drugs such as alcohol and nicotine. In terms of HIV/AIDS, the abstinence mentality has blocked needle-exchange programs and the threat of legal sanction against drug users has prevented many from seeking the help they need. There is growing evidence that harm reduction in the form of normalization is effective both in preventing and treating drug abuse and in preventing new HIV infections among injecting drug users. -- by Michael T. Wright
Homeless chronic substance abusers may have cognitive limitations and experience decision-making difficulties that prevent self-protective behaviors. Others live in temporary shelters without opportunity for long-term, stable housing. Often lacking concrete, achievable goals or the technical skills or training necessary for employment, many do not possess the future orientation necessary for making positive life changes. Some do not believe that they deserve better lives or that they are capable of improving their life situations. -- by G. Cajetan Luna
Appreciation of the connection between human rights and AIDS has emerged through the concept of vulnerability, or the extent to which people are, or are not, capable of making and effectuating free and informed decisions about their health. A person who is able to make and effectuate free and informed decisions is least vulnerable to HIV; the person who is ill informed and who has a limited ability to make and/or carry out freely arrived-at decisions is most vulnerable. -- by Jonathan Mann
Since 1987, the United States has banned non-citizens with HIV from entering the country without a special waiver. Regardless of HIV status, every person who is not a U.S. citizen must establish that he or she is admissible to receive official permission, by a visa or otherwise, to enter the United States for any length of time. Few issues in U.S. immigration law have caused as much controversy as this exclusion. The reasons behind it are complex, reflecting ignorance and bias about HIV together with insular instincts that long have shaped the entire body of U.S. immigration law. -- by Suzanne B. Goldberg
Every member of the community is required to visit the sick, attend to their needs and pray for their recovery. This obligation, known in Hebrew as "bikkur holim," creates a communal support system to complement the work of medical doctors. Paying for care for the impoverished sick is an obligation incumbent upon the community, and some authorities rule that charitable funds should be used for care of the indigent sick before they are used for building synagogues or other communal needs (Shulhan arukh, Yoreh deah 249:16). -- by Sara Paasche-Orlow and David Rosenn
Injecting drug use or sex with men are believed to account for most cases of HIV infection in lesbian and bisexual women. In several studies targeting self-identified lesbians and bisexual women, between 2 and 6 percent of the sample participants were IDUs. Among lesbian and bisexual IDUs in the 1993 San Francisco/Berkeley Women's Survey, 7.69 percent were HIV-positive. The high seroprevalence rate was consistent with an earlier study of self-identified lesbians entering methadone treatment programs in San Francisco between the first quarter of 1989 and the third quarter of 1991, which indicated an 8.8 percent HIV-seroprevalence rate. -- by Cynthia Gomez
The AIDS activist movement is sometimes described as the first "postmodern" social movement because of the importance placed upon representation in nearly all aspects of its struggle. Since as early as 1981, when the gay press began limited reporting on the medicine of "gay cancer," AIDS activists have made use of the media to further their community's goals and to address its needs. For instance, since its inception, the Gay Men's Health Crisis (GMHC) in New York has produced pamphlets, comic books, advertisements, cable shows and educational videotapes. Regional and local chapters of the grassroots organization ACT UP have facilitated the production by media groups, video units and even small community service agencies of educational materials about AIDS issues in their own communities. -- by Alex Juhasz
Musical theater confronted the AIDS issue relatively early in the crisis. One early 1980s musical on the college circuit -- Quilt: A Musical Celebration -- consisted of a series of memorials to people who had died of AIDS. In New York, numerous AIDS-related productions have appeared on the Lower East Side, Off-Broadway and (eventually) in Broadway theaters. Some audiences and critics have interpreted Stephen Sondheim's Into the Woods as an AIDS parable, although the composer has never confirmed this interpretation. William Finn's musical Falsettos, a conflation of two earlier works, March of the Falsettos and Falsettoland, brought gay people with AIDS (PWAs) and AIDS-related death to Broadway in 1992. The phenomenally successful "rock-opera" Rent (1996) by Jonathan Larson, a modern takeoff of Puccini's opera La Bohème, includes two couples (one gay, one straight) dealing with HIV and AIDS. -- by Todd E. Sullivan
For more on this encyclopedia, read excerpts at The Body.