June 5, 2001
Life Is Forever Altered as an Epidemic Turns 20
By MARY MCNAMARA, Times Staff Writer, from the LOS ANGELES TIMES
AIDS has taught the nation a searing lesson in dealing with death and cultural taboos.
At a recent gathering in a Los Angeles community center, a man who is about to speak introduces himself as a 53-year-old gay man. "I always like to say my age," he explains, "because there are so few of us left."
Conversations about the impact of 20 years of AIDS in America, even among activists, often begin in a bit of a fog. Has it been that long? some ask. Has it really? Then there is silence, or a blank look, in which the level of effort, or pain, that this train of thought will require is gauged.
Eventually the conversations move through many stages, the first of which sounds a bit like a public service ad. People want to be positive, want to mention the good things, such as the new focus on safe sex. The silence that follows is often filled with memories of each person's dead.
The young men began dying in 1979 of a fast-moving pneumonia or of an unusually virulent cancer that marked them with ghastly lesions. But it was 20 years ago this week, on June 5, 1981, that the era officially began. In the pages of the medical journal Morbidity and Mortality Weekly Report, Dr. Michael Gottlieb, a young researcher at UCLA, made the first official connection between a possible "cellular immune dysfunction" and "otherwise healthy homosexual men." The virus that caused it was passed by bodily fluids. By October the Centers for Disease Control had declared the new disease an epidemic; a year later, another Los Angeles researcher, Dr. Bruce Voeller, dubbed the illness acquired immunodeficiency syndrome.
According to the federal Centers for Disease Control and Prevention, almost half a million Americans, most of them gay men, have died of complications arising from AIDS, a hundred thousand more than died in World War II and almost 10 times as many as fell in Vietnam. In 2001 there are 700,000 to 900,000 Americans who carry HIV, the virus that triggers AIDS. There are 40,000 new infections in this country annually.
Talking about AIDS in any kind of meaningful way, said David Ehrenstein, author of "Open Secret: Gay Hollywood 1928-1998," is like trying to revisit the scene of a crime when all the witnesses are dead. "I'm at a point in my life where I don't even remember who's alive anymore," he said, only partially in jest. "People talk about AIDS like it's ancient history. It [is] just so horrible, we want to put it away from us."
Conversations about the impact of AIDS always move to lists of those who were lost. Gay men over 40 often talk of feeling survivor's shame, of feeling isolated and unmoored. They speak of the endless hospital corridors, the bedside vigils, the years of going to memorial services every week. One man recounts the relief he felt when the last person he knew with AIDS died. "I was so ashamed," he says. "But it had been going on for so long."
George Haas, a film writer and director, fled New York for Los Angeles in 1992 because he simply could not bear it. "I just haven't known anyone for very long. Everyone I knew in my 20s is dead." Other men left other cities for the same reason, because Los Angeles or San Francisco had become a graveyard to them. Some say it took years before they would allow themselves to have friends again, especially gay friends. "I started with straight women," says one man. "I figured they were pretty safe."
They feel like survivors of a war, they say. They feel like their own parents.
"My mother's friends are starting to die now," says Torie Osborn, former director of the National Gay and Lesbian Task Force. "And it's hard on her, of course. So she calls me and asks how to deal with it, because I have lost so many people. And she says, 'This is so wrong, this is something I should have to teach you.' "
Conversations about the impact of AIDS in America make it very clear that those who died from AIDS have changed, and continue to change, the social landscape in ways as startling as an earthquake, as subtle as pebbles falling into a slow-moving river.
This country's attitudes about love, sex and pleasure, about fund-raising, care-giving and political responsibility, have been shaped by AIDS. The images we see, from Showtime's "Queer as Folk" to awareness-raising ribbons of every color to actor Michael J. Fox speaking out about Parkinson's disease, are part of a continuum begun by AIDS. The accelerated workings of the Food and Drug Administration, the questions asked before a blood donation, the role of the surgeon general, the use of the terms "closeted" and "coming out" to describe denial and truth regarding just about anything--all are legacies of a disease that is far from dead.
A Time of Fundamental Change in the U.S.
The iconic red ribbon hangs on the side of the Hollywood United Methodist Church at Franklin and Highland avenues, a symbol not only of a disease but of a time when everything changed. When sex and death, politics and blood, drugs and art became bedmates. When people denied that they were sick until the day they died, and then relatives lied about what had killed them. When the obituaries in Los Angeles, in New York, in San Francisco filled page after page and read like a grim who's who in gay America. When President Ronald Reagan didn't even speak the name of the disease for years.
In grief and anger, a community became too powerful to stay closeted and a country too horrified to remain indifferent. Many who thought of gays as "those people" found themselves mourning their friends, their idols, their brothers, their sons.
In this age of the healthy folks on "Will and Grace," when a new MTV ad campaign plays on HIV awareness ("You've got it. Now you need to talk about it. MTV"), when the AIDS Ride, the annual bicycle trek from San Francisco to Los Angeles to raise funds, has become a festive social event, it is hard to remember that it has only been 20 years since the plague began, and only five years since the new drugs slowed it down.
Although new drug combinations have been successful in improving the health and longevity of those who are HIV-positive, there is no cure. AIDS remains a fatal disease. In 1999 AIDS killed 3 million people worldwide; 2.5 million were Africans and 16,273 were Americans. While the U.S. fatality rate has been halved since the early 1990s--more than 30,000 died in 1990--the shifting demographics of the disease speak volumes about cultural and economic differences. Since 1995, at least half of the people diagnosed with HIV have been black or Latino. Although the majority are young men, the rates among Latinas and black women and their children have always been higher than among white women and children. More than 60% of children with AIDS are black.
For years, activists fought for funding that would lead to treatments. Billions have been spent trying to find a cure--the national budget for AIDS research alone this year is $2.2 billion, up 10% from last year. Still, the drugs do not provide a cure, and the battlefront has shifted to ensuring delivery of the palliative drugs to impoverished nations and impoverished Americans.
"To a certain extent, AIDS has become a disease of poverty," says Craig Thompson, president of AIDS Project Los Angeles, one of the nation's largest service providers for people with AIDS and HIV. "Access to education and health insurance are literally a matter of life and death."
Safe sex and gay rights are the two most visible legacies of the disease. As the deaths mounted and fear increased, sex was dragged out of the bedroom and the bathhouse and scrutinized. People gay and straight made mental lists of sexual partners. And sex was nowhere near a specific enough term. Before sex could be safe, it had to be defined, often with very specific clinical details, which changed the way people thought about what it was they did.
More important, says Gottlieb, it forced doctors to realize that the sex lives of their patients were part of their medical history. Women had long experienced sexually transmitted diseases as chronic illnesses, he says. "Why hadn't the medical profession been more involved in the prevention of STDs?" he asks. "Because it has so long been a male-dominated profession."
During the 1980s, Gottlieb was one of fewer than a dozen people who had any kind of understanding of AIDS. He was called upon to lecture to medical and community groups, and his life soon revolved around the disease. Gottlieb, 53, continues to treat HIV patients in his spartan Los Angeles office. He estimates that he has lost hundreds of patients, perhaps a thousand.
"I've been through burnout and back time and again. If the revolution hadn't happened, if people hadn't started getting better, I wouldn't have been able to function. It's hard enough as it is."
In the middle of the crisis, Gottlieb found a source of support. He got married and had a daughter, who is now 11. "At the end of the day I go home and my daughter needs help with her homework. I drop what I'm doing, and that is a tremendous affirmation of life."
While the stress and anguish that consumed his life was very real, he would be the first to say it was nothing compared with what his patients, their families, friends and, indeed, the entire gay community faced for years. As their friends were dying by the hundreds, gay men also had to cope with the fact that their sex lives were becoming a matter of public discussion, a matter of public policy.
In California, there were attempts to quarantine gay men and discussions of tattooing those with HIV. And it meant having personal conversations no one wanted to have. "I had to talk to my mother about what I did in bed," says Thompson. "Our sex lives were on the cover of magazines."
Within the gay community, many balked at any attempt to limit or control sexual activity, and identifying AIDS as a gay disease gained and lost support. It became clear that strength was in truth, and numbers. "Silence = Death," a phrase coined by the activist group ACT UP, became the community's mantra, and coming out the only option.
"The AIDS dividend was that gay people came out, mainly because they had nothing to lose," says Ehrenstein. "And they realized that they were real, that their relationships were real. People don't remember, but in the 1960s and '70s, coming out was very controversial among gays. Now closeted people are considered odd and unfortunate, and we're talking about [gay] marriage. Never in my wildest dreams in the '60s did I think we would be talking seriously about marriage. It was inconceivable."
Faced with a crisis that for years the mainstream ignored, the gay community was forced to organize on several levels. AIDS Project Los Angeles, which has an annual budget of $16 million and a staff of 170, and similar organizations in other cities were formed first as hotlines to provide prevention information and emotional support. ACT UP and other protest and advocacy groups soon began demanding that government provide treatment, research, funding.
Some hospitals created special wards for the dying, but others refused to accept AIDS patients, so gay clinics and hospices began appearing. There were lawsuits fighting discrimination, and support groups for families and partners. Within a few years a new segment of social services was born.
"If AIDS had occurred in the mainstream from the beginning," says Gottlieb, "there might not have been a need for all the specialty organizations. The churches, the Red Cross, the relief organizations would have stepped in. The government would have taken action. As it was, these organizations did very little. It is a remarkable example of the resourcefulness of the community that it could create an infrastructure to handle such a crisis."
An Alliance of Lesbians and Gays
The crisis also bridged the historical gap between gay men and lesbians. "I remember this one evening sitting around with all these [lesbian] friends of mine who were nurses," says Osborn. "And they were all going to quit their jobs to go work on AIDS wings. Because no one else would do it, and the men were just dying every day. Every single day."
Politically, the crisis took the quest for civil rights to a fever pitch. As fear grew in the heterosexual community, the country teetered between increased prejudice and humanity toward gay and bisexual men. With misinformation about transmission running rampant, gay men, HIV-positive or not, lost their medical benefits, their jobs, their homes. The homes of children with AIDS were threatened--in one case, burned--and some Middle American families who brought their dying home discovered a level of bigotry among their neighbors that shocked them.
"White middle-class mothers and fathers suddenly found themselves screaming at doctors," says Haas. "What turned the tide was the fact that these people could not believe how their children were being treated. They simply would not accept it."
Many leaders of the religious right called AIDS a scourge from God, sent to punish sexual transgressors. And in doing so, says Robert Dawidoff, a history professor at Claremont Graduate University, they may have unwittingly turned the tide of American perception. "I think they made a tactical error in taking it that far," he says. "People just didn't buy it. They didn't buy a God who would do such a thing to people they knew."
In 1985, 14-year-old Ryan White, who had been diagnosed with AIDS the previous year, was barred from school. He and his family began speaking out about AIDS-related discrimination, and public perception began to shift. After his death in 1990, his name was used on the first AIDS emergency relief package to be approved by Congress. The death of Rock Hudson in 1985 and the subsequent emotional appeal by Elizabeth Taylor and other celebrities are considered by many the turning point in how Americans viewed AIDS. Later announcements by athletes Greg Louganis and Magic Johnson helped create a whole new model of patient advocacy--the celebrity testimonial.
Not everyone considers the change beneficial. Over the years, many people in political and medical circles have criticized the way AIDS activists politicized disease. Funding for AIDS, many have argued, is disproportionate to the number of people it affects, but if you voice this opinion, you are branded a homophobe.
"There are many factors that go into designation funding, but I don't think the 'squeaky wheel' should be one," says Michael Fumento, a senior fellow in the Washington office of the Hudson Institute think tank and author of "The Myth of Heterosexual AIDS."
"The new model goes something like this: Inflate your numbers, scare your own people and politicize everything," he says. "AIDS started it, breast cancer followed and now everyone is looking around saying, well, this is how it's done."
A Generation of Gay Leaders Lost
Even as AIDS politicized the gay community, it continued to rob it of the very people who made the change possible. Many of the original activists, including Gary Walsh, Randy Shilts, Bill Bailey and Tom Stoddard, are dead. And the loss of that generation of leaders is palpable.
"In the gay political movement, AIDS has removed an important generation of leaders and mentors, people who could have connected gay rights to larger conversations about civil rights," says John Andriote, a Washington journalist and author of "Victory Deferred."
Many believe that the gay and lesbian community has become complacent, unable even to rouse enough support to block Proposition 22, which recently declared that, in the state of California at least, marriage is by definition between a man and a woman.
Matt Redman, a founder of AIDS Project Los Angeles, points out that there are two openly lesbian members of the California Assembly and one in the state Senate. Yet there are no openly gay men in either body. "The men who might have filled those spots, our leaders and politicians," Redman says, "are all dead."
To definitively judge impact by absence, to quantify the effect of the missing, of the dead, on culture is difficult to do, but most agree that this lost generation has affected many cultural arenas. During the early 1990s, critics and social commentators agonized over the decimation of the dance world, the theater, the fashion industry, the arts in general. There was not a movie studio, dance troupe, theater company or design firm that did not lose members, often key players, and, some say, it still shows.
"We lost a panoply of heavy hitters," says Stan Herman, president of the Council of Fashion Designers of America. "Perry Ellis, Halston, who knows what they might have done. And all the young people, the assistants. It's impossible to know what we have lost."
Dance was, perhaps, the hardest hit because of the nature of its tutelage. "Clark Tippett, Edward Stickey, Nureyev, Robert Joffrey, the loss was astronomical," says Sasha Anawalt, a Los Angeles arts critic and author of "The Joffrey Ballet: Robert Joffrey and the Making of an American Company." "Especially in ballet. Classical dance is taught literally from body to body. It's so much about muscle memory. When Nureyev died, all that was in him, that was him, was just lost. Joffrey's loss was astronomical, his eye for talent, his ability to link the old with the new."
"I sometimes think classical ballet is just no longer relevant, and I know AIDS has a lot to do with that."
"Charles Ludlum, Michael Bennett were huge losses," says USC associate English professor David Roman of the directors, "but it was also the people who worked the lights and did the scenery and the people who came to watch. A lot of small theaters closed, a lot of companies disbanded because everyone was dying together--the players and their audience."
The themes of AIDS filigree the art of our times, the theater seasons, the gallery openings, the fiction and nonfiction lists. "Angels in America" won a Pulitzer, as did "Rent." Dancer-choreographer Bill T. Jones expressed the stories of hundreds of AIDS patients he had interviewed. AIDS writing workshops sprang up all around the country.
The most ubiquitous cultural force--Hollywood--has not, however, reflected the experience of AIDS as well, or as often, as many would like. "They did 'Philadelphia,' " says Ehrenstein. "Then that's it, we've 'done' AIDS." At the height of the epidemic, he says, television did a much better job of showcasing the themes, but now neither American movies nor television seems aware that there ever was an epidemic, much less that thousands continue to die here, and millions elsewhere.
In theater and dance, AIDS-related themes have grown more subtle. "The conversation about AIDS is ever changing because the disease itself shifts," says Roman. "Some communities are still using art to discuss prevention and care. Others have moved on to issues about survival."
And aging. For Roman personally, the biggest effect of the disease has been the dearth of role models. "I don't know how to be a 50-year-old gay man, and there aren't that many of them around to tell me."
David Gere, an associate professor of World Arts and Culture at UCLA, says he has noticed theater works now dealing with what it is like to have lost. But more important, he says, AIDS allowed the artistic community to see how powerful it can be, even in the shadow of sorrow and mourning.
"I find myself lingering over the documents of these artists. The tapes themselves are all I have, and they are disintegrating. It is such a vivid example of the fragility of art."
He and Roman teach classes that deal with AIDS activism and art; Gere reserves a segment of his art history classes to discuss the role of activism, and Roman teaches a course called "AIDS and America." Many of their students are children of the safe-sex era, for whom AIDS is a behavioral boogeyman, but many know next to nothing about the events that occurred during the early stages of the epidemic.
Conversations about the impact of 20 years of AIDS in America veer wildly from the lists of the dead to gratitude for the new drugs, from anger that the younger generation does not seem to be taking the disease as seriously as it should to admissions of fatigue from those who have fought so long.
"How tired are we of AIDS?" says Redman, who has lived with it for almost 20 years. "Very tired. Does that mean it has gone away? No."
A 'Gayby Boom' of Adoptive Parents
Many believe the trend of parenthood among gays and lesbians, the new "gayby boom," is the most profound change wrought by AIDS. After so much death, many people made a conscious decision to participate in new life.
For Gere, who with his partner has adopted two children, the transformation was even deeper than that.
"Around those bedsides," he said, "we learned that despite what society said, we could make commitments, take care of each other. We learned that you don't have to be biologically related to love truly, to be a family. We learned we could fail, that people would die, but that love transcends that."
Conversations about the impact of AIDS always return to those bedsides, to those candlelight vigils, to those countless goodbyes. After spending an hour discussing the changes AIDS has wrought in the gay community, the medical community, the fund-raising community, AIDS Project Los Angeles' Thompson stares off into space, remembering those grim years when everyone was dying.
"I am a professional AIDS activist," he says softly, "I am HIV-positive and I talk about the disease every single day. And I hardly ever think about those years. It was just so awful. It just changed us completely."