⏐ PUBLIC HEALTH THEN AND NOW ⏐

The Beginningsi i of f AActivism ti i bby and d ffor PPeople l With AIDS AIDS

| Joe Wright, MD

The invention of AIDS activism came soon after the AIDS epidemic emerged in gay communities in invented the idea of AIDS activ- the United States in the early 1980s. AIDS activism by and for people with AIDS, distinct from gay ism by and for people with AIDS. activism responding to the threat of AIDS on the behalf of the whole community, started as a way of Physiological death is the pro- resisting the phenomenon of social death. Social death, in which people are considered “as good as cess by which the delivery of oxy- dead” and denied roles in community life, posed a unique threat to people with AIDS. An organized gen to the body stops and the political response to AIDS began among gay men with AIDS in San Francisco, California, and New York, body’s organs cease to function. New York, formalized in a foundational document later called the Denver Principles. The ideas and Historically, social death has most language of these first people with AIDS influenced later AIDS activism movements. They also help often followed physiological to illustrate the importance of considering an epidemic from the point of view of people with the dis- death, with the social aspect of ease. (Am J Public Health. 2013;103:1788–1798. doi:10.2105/AJPH.2013.301381) death marked by rites like funer- als and wakes. But if other people consider someone essentially ALMOST SINCE THE BEGINNING America in the early 1980s. Gay dead, or “as good as dead,” this of the AIDS epidemic, people liv- men living with a disease of creates social death in advance of ing with HIV/AIDS have de- unknown etiology and sobering biological death.2 Medieval manded involvement in local, do- mortality faced not only a threat funeral rituals for people with the mestic, and international public to their health, and the stigma disease then known as leprosy health policymaking. More re- that soon accompanied it, but a (now Hansen’s disease) created cently, a series of declarations phenomenon sociologists in other and enforced the social death of signed by world governments af- settings have described as “social the afflicted person, while also firm the principle of their partici- death.” Undiagnosed gay men mourning it.3 Families’ relation- pation, if not always the practice.1 also faced the stigma of the dis- ships to relatives with dementia People living with HIV/AIDS and ease, and gay community political sometimes offer a modern equiv- their allies have created health leaders soon began trying to com- alent.4 More subtly, when others activist movements, both local bat the problem of stigma on make people with life-threatening and global, a number of which behalf of the whole community. illness into objects of pity, define have persuaded governments and But only people with AIDS faced their social existence by their pre- societies to change their re- the problem of social death, and dicted death, and ignore other sponses to the AIDS epidemic. that challenge caused gay men aspects of their personhood, they This global movement emerged with AIDS to see their agenda as create the conditions for social originally from the politics of distinct from that of the gay men death that occurs before biologi- urban gay communities in North around them. In the process, they cal death.

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Much has been written about distinct from the isolation that two men wrote the document. stigma in the HIV research litera- comes from the anticipation of The influence of their ideas ture. Social death is not the same death. A sex worker on an effec- emerged later in advocacy by as stigma, which can be described tive antiretroviral regimen occu- people living with HIV/AIDS in political terms as a mechanism pies a different position in her around the world,12 first in formal of social control with the effect of community than someone irrevo- associations of people with AIDS enforcing social order.5 More nar- cably marked for death—still and then by people living with rowly, stigma is created by a col- precarious, but distinct. HIV/AIDS in roles within lectively held belief that a given The invention of AIDS activ- broader AIDS activist movements. attribute “spoils” a person.6 If ism by and for people living with stigma means that a person is HIV/AIDS started with the prob- BOBBI CAMPBELL: viewed as “not quite human,” lem of social death, and also MAKING THE NEW social death means that a person from a related tension in the DISEASE VISIBLE is viewed as “not quite alive.” response to AIDS. If the dangers Social death is a specific response of a medical threat are under- In the 1970s, a new kind of to either the occurrence or the stated, a community may not public gay community had anticipation of death. Before bio- mobilize to respond to it. But if emerged in and around the Cas- logical death takes place, social mortality becomes the defining tro District in San Francisco.13 death may sometimes be imposed feature of a diagnosis, the people In 1975, a nurse named Bobbi on a person thought to be dying; with the diagnosis risk social Campbell moved from Seattle, at other times, dying people death before biological death. themselves might create it.7 Some This was part of the social and cultures simply avoid discussion political environment that caused of life-threatening illness as a gay men with AIDS to organize The invention of AIDS activism by and for means of preventing social as people with AIDS, rather people living with HIV/AIDS started with the death.8 Premature social death than acting only as gay men problem of social death, and also from a can be hastened by institutional- within broader gay community “ ization, poverty, or stigma, which responses to AIDS. Although related tension in the response to AIDS can push the socially dead into their initial political activity all “zones of social abandonment”— took place within the gay com- physically segregated spaces in munity, it eventually influenced Washington, got a job in a ” which the socially dead await the political concepts and tactics hospital near the Castro, and their biological deaths.9 of people living with HIV/AIDS immersed himself in the political Although social death and around the world, many of and social life of the community. stigma are distinct, the two can whom later faced similar chal- By 1981, he had enrolled in the become tightly intertwined. Spe- lenges in their own communities. nurse practitioner training pro- cifically, if living people are so The movement of people with gram at the University of Califor- despised as to be wished dead, AIDS had its formal foundational nia, San Francisco, intending to the prediction of their death is moment at a 1983 conference in focus on health care for the les- not met with what death scholars Denver, Colorado, with a mani- bian and gay community.14 describe as “anticipatory grief,” festo later known as the Denver His opportunity to promote but rather with anticipatory Principles. Described later as “the health in that community came relief. But the distinction Magna Carta of AIDS activism,”10 sooner than he expected, and at between stigma and social death the Denver Principles called for a an unexpected personal cost. On is important, and now more than new relationship between people October 8, 1981, four months ever in the era of effective treat- with AIDS, their health care pro- after the medical literature’s first ment. If a community believes viders, and the society around description of a new syndrome of that HIV is a mark of death, peo- them.11 Bobbi Campbell, from San immune deficiency in young gay ple living with HIV/AIDS will be Francisco, California, and Michael men, Marcus Conant, a dermatol- at risk for social death. On the Callen, from New York, New York, ogist who would soon become a other hand, if HIV infection is a were the de facto leaders of the leader in responding to the new survivable mark of sin, stigma small group of gay men with disease, diagnosed Bobbi Camp- may still attach to the diagnosis, AIDS at the conference, and the bell with Kaposi’s sarcoma (KS).15

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For Campbell, who a fellow Bobbi Campbell . . . had started with the new syndrome: nurse later described as “politi- to make himself available at the clinic and say, “I want to meet Brothers and sisters, we under- cally astute, … a mover and the patients.” This was not seen stand . . . that by making us dif- 16 as a friendly gesture by the shaker,” KS was not only a per- ferent, you protect yourself physicians. They thought he sonal challenge but also a profes- from “It.” However, despite our was a little off the wall. They understanding of your need to sional and political opportunity. also thought he was kind of out see yourselves as different, we of control. I think somebody By December, he started writing need to tell you that we are called him hysterical. He was a articles in the San Francisco Senti- not.24 flamboyant gay man. . . . But he nel, a local gay newspaper, about was also very, very serious.20 his experience of what was then often called “gay cancer.” He put MICHAEL CALLEN: Campbell and his KS brothers pictures of his KS lesions in the THEORY AS “LIFE RAFT” already understood that their dis- window of a Castro District phar- ease was not simply “cancer.” But macy,17 urging men with similar In 1982, New York musician the Shanti Project, which spon- lesions to seek medical attention. Michael Callen received his own sored their support group, had He also immediately saw social diagnosis of AIDS. He tried first been started before AIDS to sup- and political implications of his to make sense of his situation with port people with cancer. San condition. As he explained in his a reading list of medical journals, Francisco’s AIDS doctors’ early cultural theorists, and feminist cri- second Sentinel article, “I had to 21 focus was on cancer. And even 25 come to terms with a cancer tiques of the health care system. if cancer was frightening, its prec- diagnosis in 1981—a crisis topped He chose a particularly theory- edent was useful to Dan Turner, only by coming to terms with my oriented doctor for his health one of Campbell’s early recruits: homosexuality in 1970.” He care. Joseph Sonnabend was an continued: infectious diseases doctor in New My diagnosis was of cancer, not York’s gay community, with a AIDS. . . . I remember thinking The adjustment process in these in the back of my mind, “Well, background in immunology two situations was similar. I had some people beat cancer. research. He and a small group of to acknowledge to myself that I Maybe I will. . . .” Cancer was his patients—including Callen, who really was in a particular situa- the worst thing anybody could tion, that I had not chosen to say to you before AIDS. And I made no secret of his prior active be there, but I could choose told myself that’s what I had— sex life, and Richard Berkowitz, a what I would do in response, cancer. And the stories of peo- writer and sex worker—began to and I especially could decide ple getting over cancer were a how public or private I wanted little core of hope.22 believe that the new syndrome to be. was the result of immune over- load from repeated sexual expo- Gayness, like a cancer diagno- The name “acquired immune sis, is socially stigmatized, and it deficiency syndrome” came in sure to multiple pathogens. can be concealed or divulged. August 1982.23 But in the gay This idea contained hope: if an community of San Francisco in overload of pathogens caused . . . If it never occurred to you AIDS, people with AIDS might that a cancer diagnosis is a the earlier months of 1982, the ticket to minority status, think new syndrome was so mysterious recover immune function by again. People have lost their and yet such an omnipresent focus eliminating exposures. As Callen jobs, their homes, their friends, wrote later, and their lives because of oth- of dread that many people simply ers’ reactions to their illness.18 referred to the disease as “It.” The Whether or not Joe’s multifacto- Shanti “gay cancer” support rial theory of AIDS ultimately As an experienced inpatient group’s first communication with proves to be correct, discover- nurse, he had almost certainly the lesbian and gay community ing a different way of thinking about AIDS at such a crucial witnessed many pre-AIDS varia- noted that people around them turning point in my life pro- tions on the theme. Now as a had quickly begun to assume that vided a framework for me to patient, he started recruiting his the men with “It” were a distinct justify believing that I might 19 survive my disease. It was a life “KS brothers” in the KS clinic’s group cursed by their past behav- raft that kept me afloat in a sea waiting room, for what was then iors, whose fates would not be of doom and gloom.26 called a “gay cancer” support shared by others. The group’s group. The clinic’s head nurse newspaper ad asked the commu- Sonnabend’s theories sug- later recalled his approach: nity to stop stigmatizing the men gested that the disease was the

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result of what Callen and changing the community’s sexual urging a campaign of civil disobe- Berkowitz started provocatively ecology would save lives. In dience. In San Francisco, the Bay denouncing as “promiscuity.” Cal- social terms, if the disease was Area Reporter, the most promi- len and Berkowitz, with Callen’s survivable, people with AIDS nent of the three gay papers in lover Richard Dworkin (who did would no longer be “as good as town at the time, reprinted Kram- not have AIDS), wrote an essay dead.” They were willing to stig- er’s article. Perhaps in part for the New York Native titled matize “promiscuity”—and to take because the last section men- “We Know Who We Are: Two on that stigma as their own—to tioned specific New York–based Gay Men Declare War on Pro- survive both biologically and plans, though, it didn’t republish miscuity.” They wrote, “We are socially. the call to arms—only the the gay men who are becoming Both sets of men were trying despairing and furious words that the victims of AIDS.” And, they to reframe their diagnosis, and preceded it. said: their relationship to the commu- In a letter to the Bay Area nity. The San Franciscans framed Reporter, Bobbi Campbell We veterans of the circuit must themselves as cancer patients, responded to Kramer’s essay. He accept that we have overloaded our immune systems with com- asked for tolerance, argued that agreed with Kramer’s rebuttal of mon viruses and other sexually the disease wasn’t their fault, and the “promiscuity theory,” and transmitted infections. . . . But might not be fatal. The New with many of his criticisms of in the end, whichever theory you choose to believe [about Yorkers, by framing their illness government and the politics of the cause of AIDS], the obvious as the result of ecological condi- research. But he also disagreed: and immediate solution to the tions favorable to pathogens, present crisis is the end of urban gay male promiscuity as described how they had been Finally—the most telling point!— we know it today.27 part of the creation of that ecol- Kramer says, “I am sick of ev- eryone in this community ogy, but also pointed back to the who tells me to stop creating Callen and Berkowitz also rest of the community for the a panic. . . .” started a support group called same reason. In very different Gay Men With AIDS. In a Gay ways, the two sets of men were This is where Larry Kramer and I most fundamentally dis- Men With AIDS advertisement arguing that they had a surviv- agree. Panic causes us not to addressing other men with AIDS, able condition, for which they act, but to react—and not in a they wrote: should be neither scapegoated rational way. . . . I think that hysteria and panic are as deadly nor mourned. to our community as the dis- WE must care about ourselves; ease themselves.31 obviously, others—particularly those who advise mere modera- NOT PERFORMING BEARS tion of promiscuous behavior— Although Campbell may not do not care about us [caps in original].28 In the broader gay community, have read it, part of the New York Larry Kramer’s essay “1,112 and Native version of “1,112 and Callen and Berkowitz’s talk of Counting”30 embodied a turning Counting” (but not the Bay Area “promiscuity” won them a reputa- point in AIDS rhetoric, and pre- Reporter’s version) also high- tion among many in the gay com- saged a later era of AIDS politics. lighted a subtle but important dif- munity as moral crusaders, Kramer, a key founder of the ference in their agendas. Kramer victims of internalized homopho- New York service group Gay wrote: bia, or even as unwitting tools of Men’s Health Crisis, had decided a larger effort to remedicalize that social services and medical Little of what I’ve written about homosexuality—which only a few research would not suffice; the here is likely to be rectified years earlier had been a psychiat- epidemic required a political with the speed necessary to 29 help the growing number of ric diagnosis. But Callen and response. The essay emphasized victims. But something worse Berkowitz’s opponents usually the death toll to come and will happen, and is already hap- missed that they were speaking indicted scores of targets inside pening. Increasingly, we are being blamed for AIDS, for this first and foremost as people with and outside the gay community epidemic; we are being called AIDS, concerned about the sur- for their failures. Its last para- its perpetrators, through our vival and immunologic recovery graphs as published in the origi- blood, through our “promiscu- ity,” through just being the gay of people with AIDS. In strictly nal New York Native version men so much of the rest of the biological terms, they thought contained a specific call to arms, world has learned to hate.32

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Kramer’s “we” was the gay second by committing suicide Another man said, “This is the community. He was deeply con- after getting a diagnosis of cuta- first time that we as a group have cerned with the fates of men with neous KS. Neither man was well- decided to get together and stand AIDS. But he was even more known within the community; up on our own.”39 concerned about the welfare of the stories were only newsworthy In a letter in reply, Lorch was the gay community as a whole. If as observations of responses to unmoved: AIDS was a mortal threat to the AIDS.34 After printing the second survival of the entire gay commu- story, Bay Area Reporter editor Like yourselves, I am impotent in the face of this onslaught. nity—and it was—then the specific Paul Lorch stated frankly that he With respect to this community concerns of those marked for saw suicide as a reasonable I have paid my dues—for over death became secondary. The response to an AIDS diagnosis.35 10 years. For most of the names on your list, the only thing you primary issue for him was how After Kramer’s essay, as Lorch have ever given to this Gay life the community as a whole would and the Reporter began to devote is your calamity.40 survive. He aimed for commu- more attention to AIDS, Lorch’s nity-wide alarm by emphasizing editorials maintained this theme: He did not feel that the “calam- the likely mortality of the new he wrote that “Each man owns ity” of diagnosis offered the men disease. his body” and “the way he wants with AIDS any particular credibil- Kramer’s urgency grew out of to die,” including, perhaps, a “one ity in speaking about AIDS. And terrifying epidemiological projec- way walk into the Pacific surf.”36 he offered no apology. tions about AIDS that later Then, while casting doubt on In New York, Callen observed turned out to be, if anything, the value of extra government that while large community overly optimistic. But in 1982 funding, Lorch appeared to refer forums about AIDS generally fea- and 1983, with little known to the Shanti Project: tured various “experts” and gay about the disease, the men with community leaders, they often AIDS who spoke publicly about Already one crowd has de- did not ask for the views of peo- manded that the mayor come ple with AIDS themselves. As the disease avoided fatalism. up with tens of thousands for Campbell disagreed with Callen an AIDS victims’ house—or Callen wrote later about this and Berkowitz about the etiology warehouse—as would be as- period: sumed under the aegis of a of AIDS, but like them, he viewed crew I wouldn’t trust my sick But heaven forbid that a [per- goldfish to.37 AIDS as potentially survivable. son with AIDS] should express As Callen wrote in 1985, “Do not an opinion about etiology, die because everyone tells you Campbell and 21 other men about organizational structure, with AIDS responded to this edi- about service delivery, about that all AIDS patients die. Don’t the politics of AIDS! No, we let them take away your will to torial, and his overall direction in were only permitted to partici- live and fight.”33 AIDS coverage, with a letter criti- pate in forums as performing cizing Lorch’s “sensational bears brought in at the end to This was not simply self-affir- make them cry before the hat mation; many undiagnosed gay approach to reporting”, and got passed.41 men at the time were clearly con- explaining that “too often . . . the sidering whether they would issue of AIDS and the ‘victims’ But neither the San Francis- commit suicide if they received a themselves are pawns on some- cans nor the New Yorkers aspired diagnosis, and if so, at what one’s editorial, political, or mone- to become objects of pity, grief, 38 point. In San Francisco, before tary gameboard.” or fundraising. If they could only “1,112 and Counting,” the Bay Speaking to a rival paper inhabit the role of tragic victims, Area Reporter had devoted fairly about the letter, Bobbi Campbell could only speak in the voice of nominal coverage to the AIDS and fellow group member Gary “calamity,” then they would find epidemic, and the exceptions Walsh announced that they were themselves closer to social death were notable: in late 1982 and forming a new group “for AIDS whether they spoke or remained early 1983, the Bay Area patients only.” Walsh said, silent. If, on the other hand, their

Reporter had run two prominent It’s time we stopped being so experience gave them credibility front page stories describing men passive. This group of AIDS in the larger discussion about with AIDS who decided to end patients will be more political, how to respond to the disease, more social than the Shanti their lives, the first by withdraw- Project’s group, which is the fact of their diagnosis would ing care when very ill and the basically for counseling. actually make them more central,

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more vital. Despite a real and parallels to the Milk memorial this hit me. . . . [H]ere I was, constant threat to their biological implicitly suggested that men standing on the street, homeless and broke, and I had no idea survival, they would be just as who had already died of AIDS where I was going to stay. It socially alive as before—perhaps had joined the community’s hon- was the first time that I realized even more so. ored dead. At the same time, the that this had caused my whole world to crumble around me.47 living people with AIDS marched GAY MEN WITH AIDS, in front, in the crowd’s embrace. That month, the AIDS panic ORGANIZING AS PEOPLE Their banner, “Fighting for Our growing within the gay commu- WITH AIDS Lives,” acknowledged a biological nity was joined by a more gener- threat but refused to accept it as alized alarm from people outside San Francisco’s men with destiny. Later AIDS activists it. A Journal of the American Med- AIDS acted politically for the first would fight for their lives by ical Association report published time in response to what they demanding access to treatment, in early May 1983 described viewed as Lorch’s nihilism and not only for their own survival cases of childhood AIDS, in sensationalism, as well as his cyn- but also to emphasize that other which, the authors implied, the icism about the Shanti Project, an people could go on living despite disease could have spread from organization that supported them. having HIV.44 household contact.48 An editorial But as Campbell explained a few In the gay and lesbian newspa- by Anthony Fauci acknowledged weeks later, they viewed the Bay per Coming Up! Chuck Morris, the possibility of mother-to-child Area Reporter and Lorch as only the former publisher of the Senti- transmission (demonstrated by one of a greater set of problems nel, highlighted the immediate another article in the same that had moved them to action. political purpose: issue49), but also speculated, “If . . . non-sexual, non-blood- For months we have struggled I think the march is important borne transmission is possible, with illnesses, death, isolation because the more people see us—those of us with AIDS—in the scope of the syndrome may and fear. During this time, doc- 50 tors have defined us, politicians the flesh, the less they’re going be enormous.” A wave of anx-

have defined us, and the media to fear us. . . . Hopefully, this ious media coverage followed.51 has defined us. . . . [S]ome . . . march will humanize the AIDS 45 In an uncertain time, fear was a adopt a strident tone because crisis. they want to compel the com- rational response. But if fear placent to realize how impor- The New York Times later told spread, so too could social ostra- tant AIDS really is. . . . Morris’s story: cism, violence, and other conse- Unfortunately, this often results quences of stigma, as well as in sensationalizing AIDS and Three years ago . . . Mr. Morris formal or informal quarantine, fostering panic and hysteria in was publisher of [the San Fran- which in an incurable disease the community. The community cisco Sentinel]. . . . Now, he says, then reacts by attacking people he has more than 30 active could mean social death. For the with the disease.42 symptoms, has had three brain men with AIDS, other people’s seizures in six months, is unable fear was a dire threat.52 to work, and is abandoned by The men had already started friends of years’ standing. Twice planning a candlelight march “to he has been forced out of his NEW YORK AND SAN honor the dead and support the apartments, both times while in FRANCISCO MEET IN the hospital.46 living.” It took place on May 2, DENVER 1983, and evoked another can- The second eviction, he said, dlelight march along the same By the time of the candlelight took the form of a phone call route less than five years earlier, march, Campbell was planning to from one of his roommates, who to memorialize Harvey Milk, the attend a conference of gay and called to tell Morris that he country’s first openly gay elected lesbian health professionals, would kill him if he moved back. official, and George Moscone, the including a special satellite AIDS He moved out. As he told the city’s mayor, after they were forum, in Denver. He wanted New York Times, assassinated.43 people with AIDS to be there.53 The San Francisco 1983 can- I was standing on Castro and Their new group, People With dlelight march was joined by a 18th Street with a little plastic AIDS San Francisco, voted to bag with all my possessions that parallel event in New York. In I could grab, and all of a sud- send Campbell and Dan Turner San Francisco, the memorial’s den the enormous horror of all as representatives, and they sent

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word to men with AIDS in New all mention of the word “AIDS” personal style: Berkowitz later York. from signs until conference-goers confessed to initial irritation from Turner and Callen later wrote, boycotted the hotel’s restaurants.57 the San Franciscans’ habit of “As soon as the concept of PWAs Despite the bond of shared cir- “hugging and holding one another [people with AIDS] representing cumstances, the caucus of men and taking time for spiritual themselves was proposed, the with AIDS started with tension. reflection.”59 They also differed idea caught on like wildfire.”54 By then, Callen and Berkowitz on how to think about sexuality. Eight New Yorkers came to the were well known not only for Like Callen and Berkowitz, Camp- meeting; three San Franciscans campaigning against “promiscuity” bell had helped write a guide to and two or three men from other but also for their advocacy for the safe sex. But for him, safe sex cities also attended.55 The men immune overload theory. Turner practices were a way of embrac- with AIDS attended conference and Campbell worried that the ing sexuality, including anony- workshops but also spent hours in New Yorkers would focus on mous sexual encounters and their own caucus, each sharing “abstruse medical issues.”58 The multiple partners.60 their own experiences.56 AIDS two groups of men differed on Nonetheless, by all the later panic was close at hand: the hotel how to think about AIDS and accounts of men who were hosting the conference removed how to treat it, but also in present, the New Yorkers and

The Denver Principles Statement From the Advisory Committee of People With AIDS (1983) RECOMMENDATIONS FOR PEOPLE WITH AIDS We condemn attempts to label us as “victims,” a term which implies 1. Form caucuses to choose their own representatives, to deal with the defeat, and we are only occasionally “patients,” a term which implies pas- media, to choose their own agenda and to plan their own strategies. sivity, helplessness, and dependence upon the care of others. We are “Peo- 2. Be involved at every level of decision-making and specifically serve on ple With AIDS.” the board of directors of provider organizations. RECOMMENDATIONS FOR HEALTH CARE PROFESSIONALS 3. Be included in all AIDS forums with equal credibility as other partici- 1. Come out, especially to their patients who have AIDS. pants, to share their own experiences and knowledge. 2. Always clearly identify and discuss the theory they favor as to the cause 4. Substitute low-risk sexual behaviors for those which could endanger of AIDS, since this bias affects the treatments and advice they give. themselves or their partners; we feel that people with AIDS have an ethi- 3. Get in touch with their feelings (e.g., fears, anxieties, hopes, etc.) about cal responsibility to inform their potential partners of their health status. AIDS and not simply deal with AIDS intellectually. RIGHTS OF PEOPLE WITH AIDS 4. Take a thorough personal inventory and identify and examine their own 1. To live as full and satisfying sexual and emotional lives as anyone else. agendas around AIDS. 2. To receive quality medical treatment and quality social service provision 5. Treat people with AIDS as a whole people, and address psychological without discrimination of any form, including sexual orientation, gender, issues as well as biophysical ones. diagnosis, economic status or race. 6. Address the question of sexuality in people with AIDS specifically, sensi- 3. To obtain full explanations of all medical procedures and risks, to choose tively and with information about gay male sexuality in general, and the or refuse their treatment modalities, to refuse to participate in research sexuality of people with AIDS in particular. without jeopardizing their treatment and to make informed decisions RECOMMENDATIONS FOR ALL PEOPLE about their lives. 1. Support & Membership in our struggle against those who would fire us 4. To ensure privacy and confidentiality of medical records, to receive from our jobs, evict us from our homes, refuse to touch us or separate us human respect and the right to choose who their significant others are. from our loved ones, our community or our peers, since available evi- 5. To die—and to LIVE—in dignity. dence does not support the view that AIDS can be spread by casual, Note. The text of the Denver Principles has been reprinted in a number of places. I have taken social contact. this text from the PWA Coalition Newsline (July 1985):14. This version was reproduced by Michael Callen and has since become the standard. Its earliest appearance seems to have 2. Not scapegoat people with AIDS, blame us for the epidemic or generalize been in B. Campbell, “Second National AIDS Forum,” San Francisco Sentinel (June 23, 1983):4. about our lifestyles. Bobbi Campbell’s early reprinting of the text from the meeting is not identical to Callen’s, but the differences are slight.

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San Franciscans eventually found group, but also from Campbell’s 1983 about rejecting the words at least some common ground in nursing education, Callen’s wide “patient” and “victim.”67 Feldman their experiences, and camarade- reading list and his unique rela- died in June, soon before the con- rie as a result of sharing them.61 tionship with his doctor, and, for ference, and was represented in Callen later recalled, both men, the ideas of the wom- Denver by his lover, who did not en’s health movement of the have an AIDS diagnosis. Feld- Bobbi Campbell and I emerged decade prior.65 man’s feelings on the topic were as the two control queens. . . . Briefly summarized, the docu- integrated into the preamble of Tremendous power was dele- gated to us by the other PWAs ment rejects the victim role, asks the document, which argued for and we took it very seriously.62 clinicians to view themselves as the term “people with AIDS.” As subjective individuals, asserts a the antibody test rather than the Together, the two men side- right to sexuality, demands free- clinical diagnosis began to define stepped their enduring disagree- dom from discrimination and the political identity, that widely ments to create a consensus stigma, insists on central social used descriptor eventually document—the Denver Principles.63 and political roles in society’s evolved into several descendants, During the closing session, the response to AIDS, and empha- including “people living with men took the stage in two rows, sizes autonomy and dignity in HIV/AIDS” and “people living with the first row of men holding research, medical care, and end- with HIV.” People With AIDS San Francisco’s of-life decisions. By contrast, we “Fighting for Our Lives” banner. can outline the natural history of THE DENVER PRINCIPLES’ They read their recommendations modern social death as beginning LEGACY IN ACTIVISM out loud, taking turns reading the when people become victims and points one by one. They finished, patients, marked for biological People with AIDS initially “We will die—and LIVE—in dig- death by medically defined diag- organized not only because they nity.” They got a standing ovation nosis and prognosis; evolving as wanted to survive biologically, but from their audience of gay and they are pushed out of the social also because they did not want to lesbian health professionals. The world or leave it of their own spend their lives—however short Gay Community News in Boston, accord; and made final when the or long—as exhibits in other peo- Massachusetts, described it as “the body becomes the property of ple’s spectacles of grief, fear, most moving and significant part medicine and science until physi- anger, or nihilism. of the conference.”64 ological death. The Denver Prin- The Denver Principles led to ciples represent a point-by-point the creation of the National Asso- STARTING PAROCHIAL, strategy of resistance to the con- ciation of People With AIDS BECOMING GLOBAL crete elements of that process. (NAPWA) in the United States, As a trio of HIV-positive and eventually to similar associa- The Denver Principles reflect authors from Nigeria, Australia, tions in a number of nations. But their origin in a group of gay and the United Kingdom the legacy of the Denver Princi- men with AIDS, without social or explained in 2009, ples also had an important if less political connections to other obvious influence in later, more groups of people with AIDS, The Denver Principles are sim- confrontational forms of AIDS making a set of recommendations ple, but their significance has activism, when the separate been profound. They articulate to a group of mostly gay and les- the key challenges in the lives agendas of defense of the bian health care providers. Given of those living with HIV and broader community and the that, even at the time, people the role of people with HIV empowerment of people with themselves in overcoming such other than gay men had been challenges by refusing to be AIDS were synthesized by later, diagnosed with the new illness, victims and demanding to be larger, and more influential AIDS 66 the document is sometimes paro- involved. activist groups. chial. On the other hand, the Kramer, Callen, and hundreds ideas of the Denver Principles The document was also the of others found themselves enact- were not simply the product of a source of a linguistic shift in the ing that synthesis during the for- moment in gay politics. They epidemic. The San Franciscans’ mation of the AIDS Coalition to were distilled not only from the recently deceased comrade Mark Unleash Power (ACT UP) in New experiences of the men in the Feldman had written in January York in 1987. ACT UP became a

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national movement in part from of people with AIDS. The meet- AIDS, most often without refer- the regulation of medicines. Once new chapters that followed, as ing notes make clear that they ence to that idea’s distinct politi- effective treatment became avail- well as from incorporating like- helped explain to ACT UP mem- cal history, ultimately became able—partly as a result of these minded political groups that were bers why NAPWA might feel that the basis of ACT UP’s political changes—the global legacy of the emerging in other cities during people with AIDS should repre- credibility. When ACT UP and People With AIDS agenda was to the same time.68 Kramer himself, sent the politics of AIDS within its members gained the power persistently reduce seemingly like many gay men of the time, this larger community event. to influence research, drug complex policy debates to their assumed he might be infected, Their insistence on maintaining approval, and other aspects of simple essence: should people but didn’t have his HIV-positive their distinct political identities AIDS policy, that power was built living with HIV die of a treatable status confirmed until 1988.69 within ACT UP was notable; ACT on the legitimacy of its claims to disease to support other compet- For him, AIDS was important UP veteran Gregg Bordowitz later represent people with AIDS.75 ing priorities? Because activists because it affected the gay com- recalled that during that early Later, the Treatment Action helped simplify and then answer munity as a whole—so the dis- phase, Campaign (TAC) in South Africa the myriad forms of that ques- tinction between the diagnosed ended up using a similar synthe- tion, millions of people lived who [I]t was taboo to identify as a and the undiagnosed was less sis of broad mobilization and the otherwise would have died.77 person with HIV within the important. The political approach group. It’s hard to imagine, but narrower notion of the empower- Public health practitioners are of the Denver Principles, by you’d be sitting in this room ment of people with AIDS. TAC trained to think from the point of and you would assume that contrast, made diagnosis into a was founded by Zackie Achmat, view of defending communities, most of the men in this room distinct political category and were positive or had lovers who an activist living with HIV, and rather than from that of individu- emphasized the unique voice of were positive. But no one—I some of his friends and political als with a disease. Indeed, many of only remember Michael Callen people with AIDS. allies. Originally a project of us would recognize in ourselves and Griffin Gold were the two ACT UP succeeded in part people who would announce South Africa’s National Associa- the impulse to, as Campbell put it, because its constituency and its that they were people with tion of People With AIDS “adopt a strident tone . . . to com- AIDS before they spoke.72 membership were larger and (another Denver Principles pel the complacent to realize how more broad than those of groups Callen and Gold were descendant), it evolved into what important [the problem] really is.”42 composed only of self-disclosing cofounders of New York’s People might be described as a militant But the risk of social death is not people with AIDS. The latter With AIDS Coalition—a direct trade union for HIV-positive peo- simply an ethical peril. It is also a kind of groups were often more descendant of the Denver ple, and as the most successful of practical challenge: if a diagnosis effective as mutual aid societies Principles. a number of social movements puts people at risk for social death, than as political forces in and of Nonetheless, although many that demanded that the post- that risk becomes a powerful themselves. The Denver Princi- people within ACT UP thought apartheid government do more incentive to avoid diagnosis. ples’ agenda meant claiming an of it primarily as a gay and les- for the poor.76 By contrast, the earliest AIDS active role in a conversation bian social movement (and Like ACT UP, the Treatment activists offered an affirmative about AIDS, but did not neces- indeed, it is still framed as such Action Campaign drew on the strategy of responding directly to a sarily establish where that con- in a recent scholarly account by a expertise and energy of a health threat while resisting social versation should lead.70 former ACT UP activist73), the broader constituency. Like ACT death. Still, the ideas of the Denver earlier ideas of self-empower- UP, it also had a larger commu- The first people with AIDS did Principles ended up being funda- ment of people with AIDS even- nity defense agenda, in TAC’s not deny the seriousness of their mental to later AIDS activism. tually became a fundamental part case by demanding economic disease. But if the threat of death Early ACT UP meeting minutes of ACT UP’s politics. As the HIV- and health justice for impover- became the defining feature of reveal a disagreement between negative ACT UP veteran Jim ished Black people. But its legiti- their existence, social death would ACT UP and NAPWA about who Eigo later put it: macy depended on its ability to soon follow. By organizing them- should speak as “AIDS activists” enlist and represent people living selves, and then organizing their at a larger gay and lesbian pro- [W]hat we had to articulate with HIV/AIDS. Because of that communities around them, the was first, the whole idea that test march—and whether that people with AIDS, or people legitimacy, TAC succeeded in earliest AIDS activists remained should be someone like Kramer, with HIV, had a right to make pressuring the government to important and, ultimately, who did not have an AIDS diag- decisions about their lives, their make antiretrovirals available in honored people within their com- treatment, how they were 71 nosis. Members of the People treated at every stage of their the South African public sector munities. Their ideas and actions, With AIDS Coalition and the disease and through every gov- health system. and those of the activist move- People With AIDS Health Group, ernment organization they had The legacy of the People With ments they inspired, helped to to deal with.74 groups based on the ideas of the AIDS agenda in the United States eventually make AIDS a fact of Denver Principles, spoke on the That broader idea of the includes changes in clinical life rather than a synonym for ACT UP floor as representatives empowerment of people with research, drug development, and death. Q

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About the Author (New York: Simon & Schuster, Story Continues,” San Francisco Sentinel 36. P. Lorch, “Gay Men Dying: Shifting Joe Wright is with the Division of General 1963). (January 7, 1982): 1, 5. Gears, Part 1,” Bay Area Reporter (March 17, 1983): 6. Medicine and Primary Care, Department 7. R. K. Barrett, “Elephant People: The 19. B. Campbell, “Gay Cancer Journal: of Medicine, Beth Israel Deaconess Medi- Phenomena of Social Withdrawal and KS Support Group,” San Francisco Senti- 37. Ibid. cal Center, Harvard Medical School, Bos- Self-Imposed Isolation of People Dying nel (April 15, 1982): 6. 38. K. King, J. Smith, A. Ogden, et al., ton, MA. With AIDS,” AIDS Patient Care 9 20. H. Schietinger, oral history. “AIDS & Co. Strike Back [letter, with Correspondence should be sent to (1995): 240–244. Joe Wright, MD, Beth Israel Deaconess 21. S. S. Hughes, “The Kaposi’s Sarcoma reply by P. Lorch],” Bay Area Reporter Medical Center, 330 Brookline Ave, Bos- 8. D. Gordon, “Embodying Illness, Clinic at the University of California, (April 21, 1983): 1. ton, MA 02215 (e-mail: jwright2@bidmc. Embodying Cancer,” Culture, Medicine San Francisco: An Early Response to 39. G. Schweikhart, “Angry AIDS Pa- harvard.edu). Reprints can be ordered at and Psychiatry 14 (1990): 275–297. the AIDS Epidemic,” Bulletin of the His- tients Organize; Lorch Sends Blistering http://www.ajph.org by clicking the “Re- 9. J. Biehl, “Vita: Life in a Zone of So- tory of Medicine 71 (1997): 651–688. Response,” San Francisco Sentinel (April prints” link. cial Abandonment,” Social Text 19 22. M. Callen, Surviving AIDS (New 28, 1983): 1. This article was accepted April 7, (2001): 131–149. York: HarperCollins, 1990), 117. 2013. 40. P. Lorch, “Paul Lorch’s Response,” 10. S. Strub, “What’s Wrong With Our 23. Centers for Disease Control, “Cur- San Francisco Sentinel (April 28, 1983): Movement,” December 5, 2005, avail- rent Trends Update on Acquired Im- 1. Acknowledgments able at http://www.poz.com/arti- mune Deficiency Syndrome (AIDS)— 41. M. Callen, “Are You Now or Have Parts of this research received funding cles/401_2411.shtml (accessed April United States,” Morbidity and Mortality You Ever Been?” from Harvard Medical School and from 21, 2010). Weekly Report 31(September 24, 1982): 42. B. Campbell, “What Do People the Beth Israel Deaconess Medical Center. 11. M. Callen and D. Turner, “A History 507–508, 513–514. A portion of this research was briefly With AIDS Want?,” San Francisco Senti- of the PWA Self-Empowerment Move- 24. J. Randall, R. Carey, P. Godber, B. described in a radio commentary on nel (May 12, 1983): 12. ment,” in Surviving and Thriving With Campbell, S. Peskind, and J. Geary, May 8, 2006, for All Things Considered, AIDS: Collected Wisdom, Volume 2, ed. “Shanti Project: Bringing Cancer Out of 43. R. Shilts, The Mayor of Castro Street: National Public Radio. Michael Callen (New York: People With the Closet; Letter to the Gay/Lesbian The Life and Times of Harvey Milk (New The first phase of this project was ad- AIDS Coalition, 1988), 288–293; R. Community From Men With Kaposi’s York: St. Martin’s Press, 1982). vised by Allan Brandt and David Jones, Berkowitz, “The Way We War,” Poz, Sarcoma [advertisement],” San Francisco 44. S. Robins, “From ‘Rights’ to ‘Ritual’: whose guidance was much appreciated. February 1997, available at http:// Sentinel (April 29, 1982): 6. AIDS Activism in South Africa,” Ameri- Thanks to Dan Wohlfeiler and Jennifer www.poz.com/articles/237_7.shtml (ac- can Anthropologist 108 (2006): 312– Stevens for close reading and editorial 25. M. Callen, “AIDS as an Identity,” in cessed April 21, 2010). 323. advice; to Katie Krauss for comments on Surviving and Thriving With AIDS: Hints an earlier version; to the anonymous re- 12. O. Morolake, D. Stephens, and A. for the Newly Diagnosed, ed. Michael 45. M. Helquist, “AIDS: Anger to Ac- viewers whose suggestions significantly Welbourn, “Greater Involvement of Peo- Callen (New York, NY: People With tion,” Coming Up! (May 1983): 1. improved this article; and to several ple Living With HIV in Health Care,” AIDS Coalition, 1987), 30–34. 46. D. Clendinen, “Fear and Pain Mark helpful archivists, among them Timothy Journal of the International AIDS Society 26. Callen, Surviving AIDS, 5, 6. Spread of AIDS,” New York Times (June Wilson of the San Francisco Public Li- 12 (2009): 4. 27. M. Callen and R. Berkowitz, with R. 17, 1983): A1, B4. brary. Thanks also to the people of the 13. F. FitzGerald, Cities on a Hill: A Dworkin, “We Know Who We Are: Two Treatment Action Campaign, with whom Journey Through Contemporary American 47. Ibid. Gay Men Declare War on Promiscuity,” I volunteered for two months in 2003. Cultures (New York, NY: Simon and 48. J. Oleske, A. Minnefor, R. Cooper, et New York Native (November 8, 1982): Schuster, 1986). al., “Immune Deficiency Syndrome in 23–29. Endnotes 14. B. Campbell, “I Will Survive! Children,” Journal of the American Medi- 28. Gay Men With AIDS, “A Warning cal Association 249 (1983): 2345– 1. Joint United Nations Programme on Nurse’s Own ‘Gay Cancer’ Story,” San Francisco Sentinel (December 10, 1981): to Gay Men With AIDS [advertise- 2349. HIV/AIDS, policy brief, “The Greater ment],” New York Native (November 22, 1, 5. 49. A. Rubinstein, M. Sicklick, A. Gupta, Involvement of People Living With HIV 1982): 16. (GIPA),” available at http://www.unaids. 15. A. White, “Candles and Tears on et al. “Acquired Immunodeficiency With org/en/media/unaids/contentassets/da- Castro: 1,000 Mourn Bobbi Campbell,” 29. M. Lynch, “Living With Kaposi’s Reversed T4/T8 Ratios in Infants Born taimport/pub/briefingnote/2007/ Bay Area Reporter (August 23, 1984): Sarcoma,” Body Politic 88 (November to Promiscuous and Drug-Addicted jc1299_policy_brief_gipa.pdf (accessed 1–3. 1982): 31–37. Mothers,” Journal of the American Medi- cal Association 249 (1983): 2350– November 13, 2011). 30. L. Kramer, “1,112 and Counting,” 16. A. Lewis, nurse educator in the San 2356. 2. H. N. Sweeting and M. L. M. Gilhooly, Francisco AIDS epidemic, in an inter- Bay Area Reporter (March 17, 1983): 1, “Doctor, Am I dead? A Review of Social view conducted in 1995 by Sally Smith 16–17, and New York Native (March 50. A. Fauci, “Acquired Immunodefi- Death in Modern Societies,” Omega Hughes in The AIDS Epidemic in San 14–27, 1983): 1, 18–19, 21–23. ciency Syndrome—The Ever-Widening Clinical Spectrum,” Journal of the Ameri- (Westport) 24 (1991–1992): 251–269. Francisco: The Response of the Nursing 31. B. Campbell, “1 From the 1,112 [let- Profession, 1981–1984, volume II, can Medical Association 249 (1983): 3. D. F. Musto, “Quarantine and the ter],” Bay Area Reporter (April 14, available in Regional Oral History Of- 2375–2376. Problem of AIDS,” Milbank Quarterly 1983): 8. fice, The Bancroft Library, University of 51. B. Nelson, “‘Casual Contact” Theo- 64, supplement 1 (1986): 97–117. 32. L. Kramer, “1,112 and Counting”. California, Berkeley, 1999. ries Incite AIDS Panic,” Gay Community 4. H. N. Sweeting and M. L. M. Gilhooly, 33. M. Callen, “Are You Now or Have 17. H. Schietinger, nurse coordinator of News [Boston, MA] (June 18, 1983): 3; “Dementia and the Phenomenon of So- You Ever Been?,” PWA Coalition News- UCSF’s first AIDS clinic, in an oral his- D. Nelkin, “AIDS and the News Media,” cial Death,” Sociology of Health & Illness line (November 1985): 15–18. tory conducted in 1995 and 1996 by Milbank Quarterly 69 (1991): 293–307. 19 (1997): 93–117. Sally Smith Hughes in The AIDS Epi- 34. P. Lorch, “KS Diagnosis, Takes Life,” 52. A direct response to that threat is 5. R. Parker and P. Aggleton, “HIV and demic in San Francisco: The Response of Bay Area Reporter (December 14, included in the Denver Principles, in the AIDS-Related Stigma and Discrimina- the Nursing Profession, 1981–1984, vol- 1982): 1, 15; W. April, “AIDS Victim: sentence that concludes, “available evi- tion: A Conceptual Framework and Im- ume II, available in Regional Oral His- Gay Man Says ‘Stop Treatment,’” Bay dence does not support the view that plications for Action,” Social Science & tory Office, The Bancroft Library, Uni- Area Reporter (January 6, 1983): 1, 14. AIDS can be spread by casual, social Medicine 57 (2003): 13–24. versity of California, Berkeley, 1999. contact.” 35. S. McShee, “We Blew It [letter]”, 6. E. Goffman, Stigma: Notes on the 18. B. Campbell, “Coming Out as a Gay Bay Area Reporter (December 30, 53. The combined events in Denver Management of Spoiled Identity Cancer Patient: Nurse’s First-Person 1982): 9. were the Fifth National Gay/Lesbian

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Health Conference, the Second National language of “promiscuity” or its rebut- One Another or Die: The Life and History Project, Interview #045, Forum on AIDS, and the First National tals; and the second recommendation Legacies of Larry Kramer, ed. L. Mass March 5, 2004,” available at Association of Physicians for Human for health care providers appears to be (New York: St. Martin’s Press, 1997), http://www.actuporalhistory.org Rights Symposium. (Physicians for a gentle assertion of Callen’s concerns 56. (accessed January 20, 2006). Human Rights is now an unrelated or- about etiology, while the third likely re- 70. As the scholar Simon Watney 75. S. Epstein, Impure Science: AIDS, ganization working on issues like tor- flects Campbell’s own approach to how explained, “When people with HIV Activism, and the Politics of Knowledge ture and access to health care; in that to be a clinician, and would have been describe our own direct experience of (Berkeley: University of California Press, era, the national association and Bay the sort of instruction a progressive having the virus, we speak with unique 1996). Area Physicians for Human Rights were nursing educator might have given at authority. But a diagnosis is not a qualifi- organizations of gay and lesbian physi- the time. 76. M. Mbali, The Treatment Action cation, and the fact of having HIV does cians.) Campaign and the History of Rights- 64. Molaghan, “Health Conference and not of itself automatically make one an Based, Patient-Driven HIV/AIDS 54. Callen and Turner, “A History of Forum Focus on AIDS.” expert in any other fields of knowledge.” Activism in South Africa, Centre for the PWA Self-Empowerment Move- S. Watney, Imagine Hope: AIDS and Gay 65. Additionally, although neither ever Civil Society Research Report No. 29 ment.” Identity (London: Routledge, 2000), 262. seemed to cite the influence of the dis- (Durban: University of KwaZulu-Natal, Nor does the legitimacy of experience 55. Their names and their cities of ori- ability rights movement, the movement 2005), 1–23; S. Friedman and lead to the same conclusions: in 1984, gin are described slightly differently in has important parallels to AIDS activ- S. Mottiar, “A Rewarding Engagement? Callen and Campbell took opposing posi- different accounts by men with AIDS at ism, including having to address the The Treatment Action Campaign and tions on the question of regulation of gay the meeting. problem of social death, and the need the Politics of HIV/AIDS,” Politics & bathhouses, while each emphatically de- to reclaim a place within social life. Society 33 (2005): 511–565; 56. B. Nussbaum, Good Intentions: How scribed their positions as representing Campbell lived and worked as a nurse S. Robins, “ ‘Long Live Zackie, Long Big Business and the Medical Establish- the interests of people with AIDS. Cal- in San Francisco during the disability Live’: AIDS Activism, Science and ment Are Corrupting the Fight Against len’s position, with a wary sympathy for rights movement’s seminal 1977 “504 Citizenship After Apartheid,” Journal AIDS (New York: Atlantic Monthly the idea of intervention by public health sit-in,” which had the support of many of Southern African Studies 30 (2004): Press, 1990), 108. authorities, was explained in Mitchell Bay Area progressive political groups 651–672. Halberstadt, “Gay Activists Say Bath- 57. J. B. Molaghan, “Health Conference and was widely reported at the time. 77. E. Hoen, J. Berger, A. Calmy, and house Controversy Is Obscuring Real Is- and Forum Focus on AIDS,” Gay Com- See J. P. Shapiro, No Pity: People With S. Moon, “Driving a Decade of Change: sues,” Connection, February 1–15, 1985, munity News [Boston, MA] (July 30, Disabilities Forging a New Civil Rights HIV/AIDS, Patents, and Access to from “Bathhouses” folder in the micro- 1983): 1. Movement (New York: Times Books/ Medicines for All,” Journal of the Inter- fiche AIDS research archives Observa- Random House, 1993), 41–73; and K. national AIDS Society 14 (2011): 15; E. 58. Contents of interview from Randy tions on Social and Political Change Cone, Kitty Cone: Political Organizer for Marseille, P. B. Hofmann, and J. G. Kahn, Shilts’s handwritten notes: yellow legal 1980–1990; From the Collection of the Disability Rights, 1970s–1990s, and “HIV Prevention Before HAART in pad labeled “Dan Turner 1-13-86,” in New York Public Library (Eastchester, NY: Strategist for Section 504 Demonstra- Sub-Saharan Africa,” Lancet 359 folder labeled “Shilts ATBPO; People: Jerry Alper, 1994). Campbell’s position, tions, 1977 (Berkeley: Regional Oral (2002): 1851–1856; Z. Achmat and Dan Turner,” San Francisco Public Li- opposing regulation of bathhouses by History Office, University of California, J. Simcock, “Combining Prevention, brary, Randy Shilts papers. public health authorities in San Fran- Berkeley, 2000), 151, available at Treatment and Care: Lessons From cisco, was asserted in his open letter (no 59. Berkowitz, “The Way We War.” http://content.cdlib.org/ark:/13030/kt- South Africa,” AIDS (London) 21, addressee) of April 2, 1984, titled “We 1w1001mt (accessed April 21, 2010). supplement 4 (2007): S11–S20; 60. Bobbi Campbell Diary, MSS 96-33, Are People With AIDS,” evidently origi- W. El-Sadr, C. B. Holmes, and The UCSF Library and Center for 66. M. Guarinieri and L. Hollander, nally sent to Randy Shilts and others; in P. Mugyenyi, “Scale-Up of HIV Treat- Knowledge Management, Archives and “From Denver to Dublin: The Role of Shilts papers at San Francisco Public Li- ment Through PEPFAR: A Historic Special Collections, University of Cali- Civil Society in Treatment and Control,” brary, subject files “AIDS 1984,” folder Public Health Achievement,” Journal of fornia, San Francisco. in HIV in Europe: Moving From Death 1 of 3. Acquired Immune Deficiency Syndromes Sentence to Chronic Management, ed. S. 61. R. Berkowitz, “Tom Nasrallah—A 60, supplement (2012): S96–S104; Matic, J. V. Lazarus, and M. C. Donoghoe 71. New York Public Library, ACT UP Remembrance,” PWA Coalition Newsline S. Floyd, M. Marston, K. Baisley, et al., (Geneva, Switzerland: World Health Or- New York Records, 1999, reel 2: meeting (October 1985): 5; Callen and Turner, “The Effect of Antiretroviral Therapy ganization, 2006), 86–100; Morolake minutes; see September 7 and 14, 1987 “History of the PWA Self-Empowerment Provision on All-Cause, AIDS and et al., “Greater Involvement of People minutes referring to issue with NAPWA. Movement.” Non-AIDS Mortality at the Population Living With HIV in Health Care.” 72. G. Bordowitz, “Seizing Control of Level—A Comparative Analysis of Data 62. Nussbaum, Good Intentions. 67. M. Feldman, “Bucking KS [letter],” the FDA. Interview by Sarah Schulman, From Four Settings in Southern and 63. Read closely, the document is a Bay Area Reporter (January 20, 1983): 7. ACT UP Oral History Project, Interview East Africa,” Tropical Medicine & careful synthesis. For example, the “rec- #004, December 17, 2002,” available International Health 17 (2012): e84– 68. D. Gould, Moving Politics: Emotion ommendations for all people” would at http://www.actuporalhistory.org (ac- e93; J. Bor, A. J. Herbst, M. L. Newell, and ACT UP’s Fight Against AIDS (Chi- have been easy points of agreement; cessed January 20, 2006). and T. Bärnighausen, “Increases in cago: University of Chicago Press, the last of the “recommendations for Adult Life Expectancy in Rural South 2009). 73. Gould, Moving Politics. people with AIDS,” on sexual ethics, Africa: Valuing the Scale-Up of HIV underlines their agreements about 69. P. Merla, “A Normal Heart: The 74. J. Eigo, “A Queens Housewife. Inter- Treatment,” Science 339 (2013): safe sex but without delving into the Larry Kramer Story,” in We Must Love view by Sarah Schulman, ACT UP Oral 961–965.

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