Illness as Metaphor and AIDS and its Metaphors


Susan Sontag - 1989
    By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is--just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment and, it is highly curable, if good treatment is followed.Almost a decade later, with the outbreak of a new, stigmatized disease replete with mystifications and punitive metaphors, Sontag wrote a sequel to Illness as Metaphor, extending the argument of the earlier book to the AIDS pandemic.These two essays now published together, Illness as Metaphor and AIDS and Its Metaphors, have been translated into many languages and continue to have an enormous influence on the thinking of medical professionals and, above all, on the lives of many thousands of patients and caregivers.

Impure Science: AIDS, Activism, and the Politics of Knowledge


Steven Epstein - 1996
    Steven Epstein's astute and readable investigation focuses on the critical question of "how certainty is constructed or deconstructed," leading us through the views of medical researchers, activists, policy makers, and others to discover how knowledge about AIDS emerges out of what he calls "credibility struggles."Epstein shows the extent to which AIDS research has been a social and political phenomenon and how the AIDS movement has transformed biomedical research practices through its capacity to garner credibility by novel strategies. Epstein finds that nonscientist AIDS activists have gained enough of a voice in the scientific world to shape NIH–sponsored research to a remarkable extent. Because of the blurring of roles and responsibilities, the production of biomedical knowledge about AIDS does not, he says, follow the pathways common to science; indeed, AIDS research can only be understood as a field that is unusually broad, public, and contested. He concludes by analyzing recent moves to democratize biomedicine, arguing that although AIDS activists have set the stage for new challenges to scientific authority, all social movements that seek to democratize expertise face unusual difficulties.Avoiding polemics and accusations, Epstein provides a benchmark account of the AIDS epidemic to date, one that will be as useful to activists, policy makers, and general readers as to sociologists, physicians, and scientists.

Patient Zero and the Making of the AIDS Epidemic


Richard A. McKay - 2017
    Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder. McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.

The Queer Art of Failure


J. Jack Halberstam - 2011
    Judith Halberstam proposes “low theory” as a mode of thinking and writing that operates at many different levels at once. Low theory is derived from eccentric archives. It runs the risk of not being taken seriously. It entails a willingness to fail and to lose one’s way, to pursue difficult questions about complicity, and to find counterintuitive forms of resistance. Tacking back and forth between high theory and low theory, high culture and low culture, Halberstam looks for the unexpected and subversive in popular culture, avant-garde performance, and queer art. She pays particular attention to animated children’s films, revealing narratives filled with unexpected encounters between the childish, the transformative, and the queer. Failure sometimes offers more creative, cooperative, and surprising ways of being in the world, even as it forces us to face the dark side of life, love, and libido.

How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS


David France - 2013
     A riveting, powerful telling of the story of the grassroots movement of activists, many of them in a life-or-death struggle, who seized upon scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease. Ignored by public officials, religious leaders, and the nation at large, and confronted with shame and hatred, this small group of men and women chose to fight for their right to live by educating themselves and demanding to become full partners in the race for effective treatments. Around the globe, 16 million people are alive today thanks to their efforts. Not since the publication of Randy Shilts's classic And the Band Played On has a book measured the AIDS plague in such brutally human, intimate, and soaring terms. In dramatic fashion, we witness the founding of ACT UP and TAG (Treatment Action Group), and the rise of an underground drug market in opposition to the prohibitively expensive (and sometimes toxic) AZT. We watch as these activists learn to become their own researchers, lobbyists, drug smugglers, and clinicians, establishing their own newspapers, research journals, and laboratories, and as they go on to force reform in the nation s disease-fighting agencies. With his unparalleled access to this community David France illuminates the lives of extraordinary characters, including the closeted Wall Street trader-turned-activist, the high school dropout who found purpose battling pharmaceutical giants in New York, the South African physician who helped establish the first officially recognized buyers club at the height of the epidemic, and the public relations executive fighting to save his own life for the sake of his young daughter. Expansive yet richly detailed, this is an insider's account of a pivotal moment in the history of American civil rights. Powerful, heart-wrenching, and finally exhilarating, How to Survive a Plague is destined to become an essential part of the literature of AIDS.

Making Sex: Body and Gender from the Greeks to Freud


Thomas W. Laqueur - 1990
    It tells the astonishing story of sex in the West from the ancients to the moderns in a precise account of developments in reproductive anatomy and physiology. We cannot fail to recognize the players in Thomas Laqueur's story--the human sexual organs and pleasures, food, blood, semen, egg, sperm--but we will be amazed at the plots into which they have been woven by scientists, political activists, literary figures, and theorists of every stripe.Laqueur begins with the question of why, in the late eighteenth century, woman's orgasm came to be regarded as irrelevant to conception, and he then proceeds to retrace the dramatic changes in Western views of sexual characteristics over two millennia. Along the way, two "master plots" emerge. In the one-sex story, woman is an imperfect version of man, and her anatomy and physiology are construed accordingly: the vagina is seen as an interior penis, the womb as a scrotum, the ovaries as testicles. The body is thus a representation, not the foundation, of social gender. The second plot tends to dominate post-Enlightenment thinking while the one-sex model is firmly rooted in classical learning. The two-sex story says that the body determines gender differences, that woman is the opposite of man with incommensurably different organs, functions, and feelings. The two plots overlap; neither ever holds a monopoly. Science may establish many new facts, but even so, Laqueur argues, science was only providing a new way of speaking, a rhetoric and not a key to female liberation or to social progress. Making Sex ends with Freud, who denied the neurological evidence to insist that, as a girl becomes a woman, the locus of her sexual pleasure shifts from the clitoris to the vagina; she becomes what culture demands despite, not because of, the body. Turning Freud's famous dictum around, Laqueur posits that destiny is anatomy. Sex, in other words, is an artifice.This is a powerful story, written with verve and a keen sense of telling detail (be it technically rigorous or scabrously fanciful). Making Sex will stimulate thought, whether argument or surprised agreement, in a wide range of readers.

Terrorist Assemblages: Homonationalism in Queer Times


Jasbir K. Puar - 2007
    Puar argues that configurations of sexuality, race, gender, nation, class, and ethnicity are realigning in relation to contemporary forces of securitization, counterterrorism, and nationalism. She examines how liberal politics incorporate certain queer subjects into the fold of the nation-state, through developments including the legal recognition inherent in the overturning of anti-sodomy laws and the proliferation of more mainstream representation. These incorporations have shifted many queers from their construction as figures of death (via the AIDS epidemic) to subjects tied to ideas of life and productivity (gay marriage and reproductive kinship). Puar contends, however, that this tenuous inclusion of some queer subjects depends on the production of populations of Orientalized terrorist bodies. Heteronormative ideologies that the U.S. nation-state has long relied on are now accompanied by homonormative ideologies that replicate narrow racial, class, gender, and national ideals. These “homonationalisms” are deployed to distinguish upright “properly hetero,” and now “properly homo,” U.S. patriots from perversely sexualized and racialized terrorist look-a-likes—especially Sikhs, Muslims, and Arabs—who are cordoned off for detention and deportation. Puar combines transnational feminist and queer theory, Foucauldian biopolitics, Deleuzian philosophy, and technoscience criticism, and draws from an extraordinary range of sources, including governmental texts, legal decisions, films, television, ethnographic data, queer media, and activist organizing materials and manifestos. Looking at various cultural events and phenomena, she highlights troublesome links between terrorism and sexuality: in feminist and queer responses to the Abu Ghraib photographs, in the triumphal responses to the Supreme Court’s Lawrence decision repealing anti-sodomy laws, in the measures Sikh Americans and South Asian diasporic queers take to avoid being profiled as terrorists, and in what Puar argues is a growing Islamophobia within global queer organizing.

Let the Record Show: A Political History of ACT UP New York, 1987-1993


Sarah Schulman - 2021
    --Alexander Chee Twenty years in the making, Sarah Schulman's Let the Record Show is the most comprehensive political history ever assembled of ACT UP and American AIDS activism In just six years, ACT UP, New York, a broad and unlikely coalition of activists from all races, genders, sexualities, and backgrounds, changed the world. Armed with rancor, desperation, intelligence, and creativity, it took on the AIDS crisis with an indefatigable, ingenious, and multifaceted attack on the corporations, institutions, governments, and individuals who stood in the way of AIDS treatment for all. They stormed the FDA and NIH in Washington, DC, and started needle exchange programs in New York; they took over Grand Central Terminal and fought to change the legal definition of AIDS to include women; they transformed the American insurance industry, weaponized art and advertising to push their agenda, and battled--and beat--The New York Times, the Catholic Church, and the pharmaceutical industry. Their activism, in its complex and intersectional power, transformed the lives of people with AIDS and the bigoted society that had abandoned them.Based on more than two hundred interviews with ACT UP members and rich with lessons for today's activists, Let the Record Show is a revelatory exploration--and long-overdue reassessment--of the coalition's inner workings, conflicts, achievements, and ultimate fracture. Schulman, one of the most revered queer writers and thinkers of her generation, explores the how and the why, examining, with her characteristic rigor and bite, how a group of desperate outcasts changed America forever, and in the process created a livable future for generations of people across the world.

And the Band Played On: Politics, People, and the AIDS Epidemic


Randy Shilts - 1987
    America faced a troubling question: What happened? How was this epidemic allowed to spread so far before it was taken seriously? In answering these questions, Shilts weaves the disparate threads into a coherent story, pinning down every evasion and contradiction at the highest levels of the medical, political, and media establishments. Shilts shows that the epidemic spread wildly because the federal government put budget ahead of the nation's welfare; health authorities placed political expediency before the public health; and scientists were often more concerned with international prestige than saving lives. Against this backdrop, Shilts tells the heroic stories of individuals in science and politics, public health and the gay community, who struggled to alert the nation to the enormity of the danger it faced. And the Band Played On is both a tribute to these heroic people and a stinging indictment of the institutions that failed the nation so badly.

Nurses On The Inside: Stories Of The HIV/AIDS Epidemic In NYC


Ellen Matzer - 2019
    It is the story of two nurses who witnessed the early years of the HIV/AIDS epidemic from the frontline. It focuses on their lives and their experiences. Some of the story is raw, sometimes graphic, but familiar for people with HIV infection, family members, friends, and other nurses and medical professionals such as Ellen and Valery. There were hundreds of nurses who went through what Ellen and Valery experienced. They want to tell this story to give a voice to a generation lost, encouraging the world to remember one simple thing: this history cannot be repeated.

The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS


Elizabeth Pisani - 2008
    With swashbuckling wit and fierce honesty, she dishes on herself and her colleagues as they try to prod reluctant governments to fund HIV prevention for the people who need it most—drug injectors, gay men, sex workers, and johns.Pisani chats with flamboyant Indonesian transsexuals about their boob jobs and watches Chinese streetwalkers turn away clients because their SUVs aren't nice enough. With verve and clarity, she shows the general reader how her profession really works; how easy it is to draw wrong conclusions from "objective" data; and, shockingly, how much money is spent so very badly. "Exhibit A": the 45 billion taxpayer dollars the Bush administration is committing to international AIDS programs.

The History of Sexuality, Volume 1: An Introduction


Michel Foucault - 1976
    Michel Foucault offers an iconoclastic exploration of why we feel compelled to continually analyze and discuss sex, and of the social and mental mechanisms of power that cause us to direct the questions of what we are to what our sexuality is.

Outlaw Culture: Resisting Representations


bell hooks - 1994
    Targeting cultural icons as diverse as Madonna and Spike Lee, Outlaw Culture presents a collection of essays that pulls no punches. As hooks herself notes, interrogations of popular culture can be a 'powerful site for intervention, challenge and change'. And intervene, challenge and change is what hooks does best.

Imagined Communities: Reflections on the Origin and Spread of Nationalism


Benedict Anderson - 1983
    In this widely acclaimed work, Benedict Anderson examines the creation and global spread of the 'imagined communities' of nationality.Anderson explores the processes that created these communities: the territorialization of religious faiths, the decline of antique kingship, the interaction between capitalism and print, the development of vernacular languages-of-state, and changing conceptions of time. He shows how an originary nationalism born in the Americas was modularly adopted by popular movements in Europe, by the imperialist powers, and by the anti-imperialist resistances in Asia and Africa.This revised edition includes two new chapters, one of which discusses the complex role of the colonialist state's mindset in the develpment of Third World nationalism, while the other analyses the processes by which, all over the world, nations came to imagine themselves as old.

Chronicle of a Plague, Revisited: AIDS and Its Aftermath


Andrew Holleran - 2008
    Chronicle of a Plague, Revisited features ten pieces never previously republished outside Christopher Street, as well as a new introduction keenly describing and evaluating a historical moment that still informs and defines today’s world-particularly its community of homosexuals, which, arguably, is still recovering from the devastation of AIDS.