Thirty years ago today, the Centers for Disease Control (CDC) released its first report about the disease now known as acquired immune deficiency syndrome (AIDS).
At the time, the disease -- noted only in five young male patients -- was diagnosed as a form of pneumonia. But within a month of the CDC's initial statement, the New York Times could report that 41 cases of a rare cancer called Kaposi's sarcoma had been diagnosed in New York and California, all in homosexual men -- and the two phenomena eventually turned out to be related. The medical consensus was that more cases could easily have gone unnoticed, and fear was beginning to spread.
Dr. Lawrence K. Altman, who wrote the very first New York Times report on AIDS, wrote an extended feature for the paper last weekend, in which he acknowledged the extreme uncertainty that surrounded the disease at this early stage. "[A]t the time, we had little idea what we were dealing with -- didn't know that AIDS was a distinct disease, what caused it, how it could be contracted, or even what to call it."
It's safe to say that initial confusion was slow to disappear. As Altman points out, even finding a word for the disease was difficult; before it was officially dubbed "AIDS" in the summer of 1982, it went by other names, including "gay-related immune deficiency" (GRID; the name was abandoned when doctors realized heterosexuals could also be infected). You can see one of the first televised newscasts about the disease, from NBC in June 1982, here.
Even after the disease and its modes of transmission had been correctly identified, fear and ignorance remained widespread. In the mid- and even later 1980s, "AIDS hysteria" became a familiar term in the media and public life, and its truth was borne out in shocking examples. "I think we have won the battle against fear," Health and Human Services Secretary Margaret Heckler optimistically told an AIDS task force in January 1984. She was seriously mistaken, as future events would show.
A lengthy Time feature, "The New Untouchables," published in September 1985, details exactly how extensive AIDS-related discrimination eventually became. "Anxiety over AIDS in some parts of the U.S. is verging on hysteria," its authors wrote; they began with the following, highly disturbing example:
There are 946,000 children attending New York City schools, and only one of them -- an unidentified second-grader enrolled at an undisclosed school -- is known to suffer from acquired immunodeficiency syndrome, the dread disease known as AIDS. But the parents of children at P.S. 63 in Queens, one of the city's 622 elementary schools, were not taking any chances last week. As the school opened its doors for the fall term, 944 of its 1,100 students stayed home.
According to the magazine, state Assemblymen Frederick Schmidt, standing among a crowd of frightened, angry P.S. 63 parents, burst out: "There is no medical authority who can say with authority that AIDS cannot be transmitted in school. What about somebody sneezing in the classroom? What about the water fountain? What about kids who get in a fight with a bloody nose? They don't know!"
Schmidt's remarks highlight the public's lack of education about the new disease. Ignorance about AIDS -- in particular, the misapprehensions that it could be spread through saliva, non-sexual touch and even contact with items that had merely been handled by AIDS victims -- led many to give victims of the disease an unnecessarily wide berth. The government's insistence on using vague terms such as "bodily fluids" to describe how the disease spread did not make things any clearer.
AIDS victims suffered for social as well as medical reasons; those who want them can find example after example. In the Time piece alone, we meet a Miami caterer whose AIDS has frightened away his customers; a bishop who urges parishioners to stop drinking from the communion cup; a teenage convict forced to eat off disposable plates (it later emerged he didn't have AIDS at all); and a Memphis card-player told to wear rubber gloves inside his own bridge club (his tolerant response: "I don't like this reaction because I happen to be the brunt of it. But I do understand it"). These are individual anecdotes, but they illustrate a wider cultural problem.
Northwestern University’s John Phair protested the general frenzy in an April 1986 editorial for the Chicago Tribune, comparing the fear of AIDS victims to 1950s-era anti-communist paranoia and Japanese-American internment during the Second World War. He wrote:
[W]ith the AIDS crisis, public hysteria has surfaced again, stimulating irrational, insensitive and sometimes illegal responses. Such actions threaten to tarnish our history again, and could be as paralyzing as the disease itself.
According to a poll published in December by the Los Angeles Times, 50 percent of the adults surveyed supported a quarantine of AIDS patients, 48 percent would approve of identity cards for those who test positive for antibodies to the virus that causes AIDS and 15 percent favored tattooing AIDS victims. Ostracizing and isolating AIDS patients and other infected people, however, would only prevent them from cooperating with researchers openly and honestly. Such trust is essential if AIDS is to be brought under control and eliminated as quickly as possible. ...
[A]ttorneys familiar with AIDS-related employment problems have noted an increasing number of cases in the last year of employees who have been transferred to less desirable jobs, placed on sick leave or disability, or fired because employers fear they could transmit a contagious disease. However, the Centers for Disease Control has said that AIDS cannot be transmitted casually in the workplace.
Phair's intentions were good, but he could hardly combat a national wave of fear single-handedly. More than a year after his piece was published, the parents of three hemophiliac children -- who, though they had "tested positive for AIDS antibodies," did not have the actual disease -- would offer the Senate Labor and Human Resources Committee a chilling personal example of the effects of public ignorance. Louise and Clifford Ray, whose children had been banned from their Florida elementary school before a judge ruled they must be allowed to attend class, told senators that someone had set fire to their house just days after the beginning of the school year, presumably to frighten the family out of town (it worked).
Indeed, schools were hot spots for AIDS discrimination in the mid-1980s, largely because of parents' fears for their non-infected children. In August 1988, Florida’s Saint Petersburg Times told of 6-year-old Eliana Martinez, a mentally handicapped, AIDS-infected girl who was ordered by a federal court judge to attend school inside a 6-by-8-foot glass booth until she "[was] potty trained and stop[ped] her finger sucking."
The most famous case of discrimination toward an AIDS-infected student was doubtless that of Ryan White, described in a New York Times obituary as "the Indiana teenager who put the face of a child on AIDS." White contracted AIDS after receiving a blood infusion (he was a hemophiliac), and died at the age of 18. He attracted celebrity supporters such as Michael Jackson and Elton John -- and was even invited to the Academy Awards -- but was also the subject of violent discrimination close to home. At the time of his death, the Times explained:
Ryan's struggle to be accepted in a public school forced Central Indiana to grapple with difficult issues raised by the disease. Around the nation, the attendant publicity helped pierce myths about AIDS, helping health experts and educators emphasize that it is not transmitted by casual contact, that it affects people from many walks of life and that although always fatal, the infection leaves many people able to continue normal lives for years. ...
[He] became a household name in 1985, when as a 14-year-old he began his successful fight to attend the public school in Kokomo that had banned him amid a clamor of fearful students and their parents. For months, he had been forced to get his seventh-grade class lessons through a telephone hook-up at home.
After he prevailed in court, the boy was taunted at school by other children who wrote obscenities on his locker and shouted insults as he passed in the halls. Vandals broke windows of the family's house and slashed their car's tires. When his mother, Jeanne White, went to the grocery store, cashiers would throw down her change to avoid touching her hands.
An August, 1987, Playboy piece listed further examples of AIDS-based discrimination. It began:
A fatal disease that's transmitted by sexual contact and that as yet has no cure is bound to lead to hysterical or outrageous action. And despite almost daily reporting about AIDS in newspapers and on television, there are still people who are misinformed about this disease. The following stories illustrate how deep the fear of AIDS goes, showing that people believe what they want to believe, facts notwithstanding, and that some will go to any length for protection -- or revenge.
It went on to offer numerous bullet-point examples (the following are direct quotes):
- Some 20 District of Columbia police officers raided a homosexual social club wearing gloves, face masks and bulletproof vests to "protect themselves from a lethal threat."
- A British AIDS victim who died of the disease has been entombed in concrete at a cemetery in North Yorkshire as a precaution "in case we ever opened up the coffin again," explained a spokesman for the county's health department.
- The director of a Chicago AIDS clinic and information hotline reports a phone call from a worried motorist who had run over a pedestrian he believed to be gay. The motorist wanted to know how to decontaminate his car, which had die [sic] man's blood on it.
Of course, in an age of hysteria, there were voices of reason, too. "AIDS is grim enough without exaggeration," the New York Times sighed in 1987, blaming special interest groups -- anti-STD campaigners, money-hungry medical researchers, religious moralists -- for overstating AIDS' threat dramatically.
There is no clear evidence that AIDS in the United States has yet spread beyond the known risk groups, notably homosexuals and drug addicts. There is some reason to suppose it will stay confined to these groups for the foreseeable future. ... With so many experts dramatizing the epidemic, it's little wonder that those who depend on their advice are coming to believe that AIDS is already as rampant as influenza.
Boston's WBZ-TV station manager Tom Goodgame seemed to sum it up well when, quoted in Time, he mused: "The problem with AIDS is really two epidemics -- the real health epidemic and the epidemic of the mind." Thankfully, although the disease itself persists today -- albeit in a less lethal form -- the hysteria has largely been eradicated.
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