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Community in crisis
On June 5, 1981, five unusual cases of pneumonia in patients in Los Angeles were reported in the “Morbidity and Mortality Weekly,” a newsletter from the Centers for Disease Control and Prevention.
It was the first notice taken by federal public health officials of a deadly virus — later dubbed HIV, for human immunodeficiency virus — that already claimed countless lives, but without a diagnosis pinpointing why. The plague had begun. It just didn’t have a name yet.
Now, 30 years later, the National Museum of American History, one of the Smithsonian museums on the Mall, the same museum featuring serious history and also pop culture, is marking this anniversary of what became known as the HIV and AIDS epidemic with a three-party display and website beginning June 3.
“With this first official notice of the illness, thousands were infected before anyone knew,” says the exhibit’s curator, Katherine Ott, who has been working with an American History Museum team to plan it for the past year and a half. “The full pattern simply didn’t emerge until later.”
The public health and scientific as well as political responses to HIV/AIDS during the earliest phase, from 1981 to 1987, with original magazine covers and copies of reports plus lab equipment used to isolate the virus, are the focus of one of the three parts, the showcase to be in the museum’s Science in American Life exhibition area.
Another set of materials, dating from 1985 through 2009 — including movie posters, such as for the 1993 film “Philadelphia” starring Tom Hanks and Denzel Washington — will show in the museum’s Archives Center how individuals and society were affected by the epidemic.
Finally, on the first-floor Artifacts Wall, the museum will display a panel from the AIDS Memorial Quilt of the Names Project Foundation, honoring Roger Lyon, who died of complications from AIDS in 1984. A year earlier, Lyons testified before a Congressional hearing, throwing down a challenge to his listeners: “I came here today to ask that this nation with all its resources and compassion not let my epitaph read that he died of red tape.”
But red tape and even worse, reluctance to face facts, often rooted in homophobia, led to denial that anything serious was happening and a crucial delay in addressing the epidemic. For years it was ignored by many in the political establishment, such as President Ronald Reagan, whose first speech on the subject only came in 1987.
Looking back at the early period, as the illness emerged and little was done to combat it, Ott, a lesbian, says “I have friends who died, mostly in the 1980s, as a result.”
“There’s a visceral aspect to this that other anniversaries just don’t have, for people who lived through this, including those who became sero-positive in the 1980s and are still alive,” says Ott, who also has “friends and colleagues who are living with AIDS now.”
“Anniversaries like this one are a perfect time to reflect, to see where we are today, and how much things have changed, because it’s almost two generations now since the first HIV reports. But in HIV years it’s probably more like seven generations. So much has changed.”
A month after the first CDC newsletter notice came a short article in the New York Times, headlined “Rare cancer seen in 41 homosexuals,” and as the year 1981 ended, 121 deaths were recorded with the cause labeled “gay-related immune deficiency” or GRID.
The Grim Reaper indeed stalked gay men but as the scourge was fully understood, one caused by a virus passed through blood or bodily fluid transmission, its dimensions were finally understood as constituting a global pandemic afflicting both genders, and worst of all in sub-Saharan Africa. In 2009, an estimated 33 million people worldwide were living with HIV-AIDS, with 2.1 million fatalities from the illness that year and also with 2.6 million new infections every year.
Today an estimated 600,000 men, women and children in the U.S. have lost their lives to the many complications from AIDS. Although numbers of those infected had been dropping in the U.S. earlier, that has begun to change in recent years. In 2009, District of Columbia HIV-AIDS officials reported that at least 3 percent of D.C. residents have HIV or AIDS. D.C. is now often called the nation’s HIV-AIDS capital.
Ott, whose Ph.D. is in the history of science and medicine from Temple University, has been a curator at the museum for 15 years. She acknowledges that the exhibit has been extensively vetted within the museum, due to the controversy last year at a sister Smithsonian museum, the National Portrait Gallery, over the “Hide/Seek” exhibit there. She said Brent Glass, the History Museum director, “because of sensitivity over that,” had asked for a review of the HIV-AIDS exhibit by “the Castle,” a reference to the Smithsonian headquarters. Glass now says that, “this display will help visitors understand why these events gripped America 30 years ago.”
Ott says she hopes there’s an audience for the new exhibit, especially for younger people whom she says “have no idea really what we went through, and who now know that HIV infection is not an automatic death sentence, the way it was 25 or 30 years ago.”
She says she has interns today who have never even heard of Rock Hudson, the actor whose death from AIDS-related illness in 1985 made him one of the first celebrities to die from the virus. She sees the exhibit as “a chance for younger people to learn about how there were still sodomy laws in half of the states and how homophobia and the fear of this disease was so intense in the 1980s.”
Of course the virus is not specific to gay male sex, but because it was first detected there, and spread so rapidly through the gay male community, it became linked in the public’s mind to gay males as well as two other marginalized or outsider groups, Haitians and intravenous-drug users. The stigma was deeply set and led to laws being passed that discriminated against people with AIDS in insurance and housing and the workplace.
These sanctions were linked to homophobia and often took the form of enforcing traditional attitudes about sexuality, as cities like San Francisco and New York took steps by 1984 to close down bathhouses and sex clubs. But gay males and their allies, often lesbians, began to act when others would not, to care for those stricken with the illness as well as to push back against vicious anti-gay ignorance with public education campaigns to promote what came to be known as “safe sex.”
The museum exhibit showcases this entire period, with a focus on several of the stages — first, as a public health crisis, when the word was being passed about how AIDS was transmitted and how to prevent the disease’s spread; and then as a scientific mystery, when a high-stakes international race began, to find the cause of the illness; and also as a political flashpoint, when some voices were raised condemning homosexuality as a sin and sometimes even that AIDS was a suitable punishment for such infractions. Other voices challenged Reagan administration inaction, especially in 1987 when activists took to the streets in civil disobedience through ACT UP — the “AIDS Coalition To Unleash Power,” with its familiar pink triangle and its emblematic slogan of “Silence = Death.”
Depicting these stages are magazine covers such as one from The Advocate in 1981, with its front-page headline question, “Is The Urban Gay Male Lifestyle Hazardous to your Health?” about the “new diseases attacking gay men.
Another cover story — headlined “Epidemic,” about the “mysterious and deadly disease called AIDS” — appeared in Newsweek in April 1983. Ott says that its lead author decided to focus on the illness partly as a result of the fact that he had a brother who was gay and who later died from AIDS complications.
Other items on display are the early reports and pamphlets charting the course of efforts to combat the disease. The museum has collected what Ott calls “a lot of the paper ephemera, much of which was educational, to get the word out, including efforts to promote safe-sex practices, such as a booklet titled “How To Have Sex in An Epidemic,” co-authored by Richard Berkowitz and Michael Callen, advocating the use of condoms and other measures for safe sex; and a pamphlet from 1982 titled “Healthy Sex is Great Sex.”
Also shown is an early safe-sex teaching manual, “Teaching AIDS: A Resource Guide on AIDS,” co-authored by a social worker Marcia Quackenbush, whom Ott says “began working in sex education with gay youth in San Francisco and she’s still active.”
Quackenbush in fact will be among the bloggers at the exhibit’s website, which will log in new comments from experts about the exhibit once or twice a month. The exhibit is expected to run until November, though no definite closing has been set yet; it will depend on when the museum’s West Wing, where the materials on display will be housed, must be closed for renovations.
Some of the displayed material comes from the extensive collection of research materials donated in 2008 to the museum by the writer John-Manuel Andriote, author of the 1999 book “Victory Deferred: How AIDS Changed Gay Life in America.” Andriote, who lived in Washington for several decades until returning home to Connecticut in 2007, completed in 2010 a series of interviews to update the book, which will be re-issued later this year in a new edition.
Andriote, who learned he was HIV-positive in 2005, says that in his interviews last year he was, “Startled to hear gay men now say that their sense of the crisis has passed, that HIV has become ‘normal,’ a harsh fact of life but not what defines or necessarily ends it.”
The exhibit also displays antibody tests from 1985 and condoms distributed to gay men in the early and mid-1980s, with a stress on the importance of their use to combat AIDS. One section shows how those test kits emerged from the research in 1983-1984 of two physicians, Luc Montagnier (Pasteur Institute, Paris) and Robert Gallo (National Institute of Health, Bethesda), whose pioneering lab work led to them being recognized as the co-discoverers of HIV as the virus responsible for the cause of AIDS. They co-patented the test kit and split its royalties.
A fascinating feature of the exhibit is the timeline for the years 1981 to 1987, which shows key dates defining the early panic over the illness — such as in 1985, the same year Rock Hudson died and also when the first antibody tests began to be used, when the student Ryan White, a teenaged hemophiliac who contracted HIV from a contaminated blood treatment, was expelled from his Kokomo, Ind., middle school, though doctors insisted he posed no risk to other students.
The next year, as the exhibit shows, came the first drug treatment — AZT, a type of antiretroviral drug, originally marketed under the name Retrovir — that helps to slow the spread of HIV in the body but does not stop it entirely. Also in 1986 came the first official U.S. government policy document on HIV/AIDS, which advocated the use of condoms, infuriating the right wing. It was the landmark study by C. Everett Koop, the U.S. Surgeon General, of which a copy is on display in the exhibit.
But progress in understanding the disease came only in fits and starts, as the exhibit reveals, and key information sometimes lagged for years. Ott notes that for a long period “women with AIDS, who were predominantly poor and African American or Latina, were excluded from clinical tests, and that the official AIDS definition did not include diseases specific to women until 1994.”
The exhibit and its companion website are open to the public beginning today.
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