Two Decades of AIDS:
Scenes from an Epidemic

Beyond "Victimhood": The Denver Principles, June 9-12, 1983

While not widely known today, the "Denver Principles," written from June 9-12, 1983, in many ways represent the Declaration of Independence and the Bill of Rights rolled into one for people with AIDS (PWAs). Even though little was known -- and much was feared -- about HIV/AIDS back in 1983, a small group of PWAs somehow managed to see beyond the hysteria of the moment in order to craft a document that would become the cornerstone of the PWA self-empowerment movement.

The Principles grew out of a casual meeting in a hotel hospitality suite of about a dozen PWAs at the National Lesbian and Gay Health Conference in Denver. Struck that all of them had been treated as helpless victims, the group called upon two of the men -- early AIDS activists Bobbi Campbell of San Francisco and Michael Callen of New York City -- to draft a statement of principles based upon their discussions. Throughout the conference, East Coast and West Coast representatives wrangled over such topics as the New York ones focus on the cause of AIDS and the California interest in holistic healthcare.

"At the closing session of the conference, there was supposed to be a report from the AIDS Forum. However, the PWAs demanded that instead of being talked about, the conference hear directly from the people actually affected and infected," recalls Michael Shernoff, a Manhattan psychotherapist who is one of the few surviving HIV-positive people in attendance at the meeting. "Then, standing on the podium, each PWA read a different point of what came to be known as The Denver Principles".

The preamble set the tone: "We condemn attempts to label us as 'victims,' which implies defeat, and we are only occasionally 'patients,' which implies passivity, helplessness, and dependence upon the care of others. We are 'people with AIDS.'"

The 17 principles themselves were clustered around four themes:

Recommendations for Health Care Professionals: The Principles call for providers to frankly state their beliefs about the cause of AIDS, get in touch with their feelings about AIDS, and "identify and examine their own agendas." They also demand that providers address PWAs as "whole people" and approach issues of sexuality "specifically, sensitively, and with [accurate] information." From this launching-off point, the PWA movement would go on to dramatically redefine the doctor-patient relationship and set a powerful example for breast-cancer and other health consumer movements.

Recommendations for All People: The Principles exhort "all people" to "support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us, separate us from our loved ones, our community, or our peers . . . " They also ask that people "not scapegoat people with AIDS, blame us for the epidemic, or generalize about our lifestyles." Although too much scapegoating, blame, and generalization have followed in the years since 1983, the Principles provided the basis for active resistance to AIDS phobia.

Recommendations for People with AIDS: PWAs are next urged to organize politically, be involved in every level of AIDS decision making, and "be included in all AIDS forums with equal credibility as other participants." This concept represented a call to an entire generation of so-called "amateur experts," the many PWAs who can and do participate on equal footing with specialists of every stripe. The Principles also call upon PWAs to reduce their sexual risk behaviors, noting that they "have an ethical responsibility to inform their potential sexual partners of their health status." This point sparked controversy (as it still sometimes does), but also highlighted the shared burden of responsibility for HIV prevention.

The Rights of People with AIDS: The Principles end with a stirring statement that PWAs have the right to: "as full and satisfying sexual and emotional lives as anyone else," quality health care without discrimination, full explanations of risk and benefits of medical treatment and research studies, privacy and confidentiality, and " to die and live in dignity." At a time when people with AIDS were routinely dehumanized, the Principles sought to advance not only human rights, but even common decency towards others.

In all, the Denver Principles were so foundational to the PWA self-empowerment movement that, in retrospect, they can seem almost cliched. Consider, however, that in June 1983, the first cases of AIDS had been identified less than two years earlier, and HIV had been discovered scarcely six months prior. From this vantage point it becomes clear that the Denver Principles nothing short of visionary, if not revolutionary -- and those in attendance at the Denver conference knew it.

"When the PWAs were finished reading the Principles, there was a pregnant pause and ringing silence," recalls Shernoff, "But only for a moment, until all of us in the audience jumped to our feet, yelling our approval and delivering a thunderous applause and ovation to those courageous men."

Many of them would go on to become internationally prominent advocates of the rights of people with HIV/AIDS, as well as founding members of the National Association of People with AIDS (NAPWA). Most are now deceased; indeed Bobbi Campbell died within six months of the meeting. Yet, as Shernoff notes, "through their foresight, integrity, guts, and stubbornness, they had created a defining moment of the history of what was then a so-fledgling AIDS movement. Little did any of us know that this would begin a process that would change how Americans participate in our own health care."

"Deathly Silence": Ronald Reagan's First Speech on AIDS, May 31, 1987

When AIDS activists coined the slogan "Silence = Death" in the mid-1980s, it was directed towards all of an indifferent society. But if the sentiment were to be applied to any one individual, it would have to be Ronald Reagan, who was inaugurated as president in 1981, but who failed to give a policy address on AIDS until six years later.

Reagan, a former B-movie actor and two-term governor of California, defeated Jimmy Carter in 1980 by campaigning on the theme that it was "morning again in America." His conservative Republican agenda called for a return to so-called traditional moral values and sharply curtailed government spending on everything but national defense.

The first reports about unexplained immune deficiency among a cluster of gay men appeared scarcely half a year into Reagan's eight-year presidency. Yet even as the death toll grew -- from 184 people in June 1982, to 7,799 in December 1984, to 20,849 in June 1987 -- Reagan remained silent. Rumor had it that Reagan placed a sympathetic personal phone call to his old Hollywood friend Rock Hudson when it became known that Hudson had AIDS. But Reagan the public figure remained mute.

Meanwhile, throughout the early 1980s -- the Reagan administration steadfastly opposed increased funding into AIDS research or HIV prevention. Even as the epidemic escalated out of control, there remained a near-total vacuum of leadership at the national level. Reagan's Surgeon General, C. Everett Koop, was the exception who proved the rule by offering sound medical guidance about the epidemic to the American population -- often over the objections of moralists in the Republican Party who opposed all education about sex and drugs. The most notable prevention effort from Reagan's inner circle was his wife Nancy's anti-drug slogan "Just Say No," hardly a sophisticated strategy for combating epidemic disease or substance addiction.

Reagan would probably have preferred to leave office without ever addressing AIDS, but by mid-1987 much of the general public had grown fearful of a devastating "heterosexual epidemic." Once AIDS began to threaten people who mattered to him and to the Republican Party, Reagan finally decided to give a speech, using the platform offered by the Third International AIDS Conference held in Washington D.C. He addressed the crowd of researchers, politicians, service providers, and activists on May 31, 1987.

Throughout his speech, Reagan seemed blithely unaware of the severity of the crisis around him. He cracked a few jokes, then proposed widespread HIV testing but no new AIDS education initiatives or additional funding. He lamented the sad fates of many HIV-positive hemophiliacs, transfusion recipients, and spouses of injecting drug users, all without a word about the single hardest-hit population: gay men. Reagan's only concrete, substantive proposal, if it can even be called that, was the formation of a Presidential Commission on the Human Immunodeficiency Virus Epidemic.

The next day, activists -- including members of the newly formed protest group ACT UP -- held a demonstration at the White House, where they were met by Washington police wearing long rubber gloves. Having found the president's comments woefully inadequate, many protestors already had their eyes turned towards posterity, chanting "History with recall, Reagan did the least of all." Five months later, the second lesbian and gay March on Washington featured the first unfolding of the entire AIDS Memorial Quilt, which had grown large enough to fill the National Mall.

Reagan's presidential commission eventually issued several hundred recommendations, only ten of which made it past the administration's censors. And while Reagan did subsequently accede to Democratic demands for increased funding, the 1987 speech was essentially the beginning and the end of his "leadership" on AIDS.

Much has been written indicting Reagan as everything from a war criminal to the architect of genocide for his malign neglect of the AIDS crisis. While much of this rhetoric is overheated, Reagan cannot easily be exonerated. Some supporters have pointed out that while Reagan ignored the epidemic, he also resisted pressure from the far right to enact harshly coercive public health policies such as mandatory testing, compulsory contact tracing, and even mass quarantine. Yet it is hard not to think that the shape and scope of the AIDS epidemic would have been very different had Jimmy Carter been re-elected or, even more so, had Ted Kennedy succeeded in his 1980 bid for the presidency. And even within the Republican ideology of limited government and traditional morality, Reagan is put to shame by the example of his Surgeon General, who had himself been chosen because of his conservative credentials.

In 1989 Reagan left office, his popularity high, and was succeeded by his vice president, George Bush, one of whose advisers told reporters that they had trouble addressing AIDS issues because of the "giggle factor" it provoked in them. In 2000, Reagan is still alive but suffering from advanced Alzheimer's Disease, which has wiped out most of his memory.

Apparently much the same malady afflicts the Reagan presidential museum and library, which is housed in a mountain-top hacienda in Simi Valley, California. This official custodian of Reagan's historical legacy details his electoral victories, his high-stakes arms negotiations with the Soviet Union, his re-invigoration of the Republican Party, and other accomplishments. Yet a visitor could search in vain for any sign that Reagan also presided over the outbreak and catastrophic spread of an epidemic that has killed more than a quarter-million Americans.

In spring 1998, the Reagan museum featured a temporary exhibit about quiltmaking in American history and culture. Quilts of every shape and design were included, many glorifying God, country, and baseball. Missing was any sample from, or even reference to, the most important quilt in American history. The silence continues.

The New Face of AIDS: Magic Johnson Reveals He Has HIV, November 7, 1991

He led Michigan State to the NCAA title in 1979, made the NBA first team nine times, and won the L.A. Lakers five NBA titles, winning the MVP award three times. He holds an Olympic gold medal as part of the U.S. "Dream Team" and is second in all-time NBA assists with 10,141.

Yet, like other sports heroes such as Lou Gehrig and Brian Piccolo, basketball star Magic Johnson may in the end be remembered less for his exploits on the court than for his high-profile struggle with disease. Johnson has been virtually synonymous with HIV since November 7, 1991, the day that he held a televised press conference, which was in its own way as memorable as Gehrig's 1939 speech at Yankees Stadium and the dramatized scenes of the film Brian's Song.

Johnson called the press conference the day after learning that he had tested positive for HIV. At a time in which AIDS still seemed like an automatic death sentence -- five years before the first widespread use of combination antiviral therapies -- Johnson was remarkable in his composure. Explaining his test results, he also announced his retirement from professional basketball. Although science had by then established the infinitesimally small risk of HIV transmission through sports, popular perceptions had by no means caught up.

Despite an ever changing epidemic, AIDS until that point had been personified by the late actor Rock Hudson -- a white, closeted gay man who became infected through sex with another man. Johnson presented the entirely new image of a heterosexual man of color. Thus, perhaps more than any other development in the entire AIDS epidemic, Johnson's quick and courageous announcement prompted debate throughout the U.S. and beyond.

When he soon returned to the court to play in the NBA All-Star Game and in the Olympics, the quintessentially macho world of professional sports was forced to reconcile its admiration for Johnson, the athlete, with its fear and loathing of people with HIV. Likewise, African Americans could no longer deny the reality that the AIDS epidemic, fueled by poverty, racism and drug use, had made devastating inroads into their community. If HIV could infect one of its brightest stars, it could affect anyone.

Most of all, Johnson brought home the reality of HIV among heterosexuals. Although AIDS was already raging across Africa, spread primarily through heterosexual intercourse, denial still prevailed in the U.S. To many, AIDS remained the scourge of gay men and "junkies." Rumors abounded that Johnson had secretly injected drugs or had sex with other men. Yet it soon became clear that he had probably become infected through unprotected intercourse with what he estimated as thousands of women fans over the course of his basketball career.

Yet if Johnson at first represented the new face of AIDS, over time he has also become the symbol of what it means to live with HIV rather than to die from AIDS. Even at the time of his press conference, Johnson said "I plan to go on living for a long time." And, indeed he has.

Whereas the lingering images of Hudson are from his haggard last days, the 40-year-old Johnson has remained the picture of health. He returned to the basketball court on several occasions before a final retirement in 1996. He also coached the Lakers and then become their part owner, one of his many holdings in a $100 million financial empire. In addition, he started his own educational foundation and even hosted a quickly cancelled late night talk show called "The Magic Hour." In all, he has won some and he has lost some, just like many people living with HIV.

Johnson has also come to reflect some of the ambiguities around the meaning of combination antiviral therapies. In May 1998, he told the program 60 Minutes that "the medicine has been unbelievable . . . The doctors and scientists have been doing a marvelous job. I've been good. I'm alright. I know I'm going to be fine." Both his wife and a son conceived in 1991 are HIV-negative.

Fortunately, Johnson has not gone so far as to claim to be cured. "I'm healed. There's a difference. Cured means it's gone forever," said the world's best known openly HIV-positive person. "And I'm not going to sit here and say that because that would mean misleading a lot of people."

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This article was provided by Body Positive. It is a part of the publication Body Positive.