San Francisco Chronicle - Monday December 11, 1989
Randy Shilts

An AIDS patient is not to be called a "victim" or a "sufferer," according to the lexicon approved by a World Health Organization conference. Instead, he is a "person with AIDS."

Also taboo is the term "I.V. drug abuser." The preferred phrase is "injection drug user," the glossary said. And prostitutes should be called "sex industry workers."

In a final burst of gobbledygook that would make Pentagon word twisters proud, the WHO-approved vocabulary suggested that AIDS dementia should be referred to as "HIV-related Organic Brain Disease." Or, if you prefer, just OBD.

WORD POLICE

To outsiders, all this may sound somewhat arcane. Yet in the world of AIDS, woe to those who violate the linguistic regulations imposed by the AIDS Word Police.

A diplomat from Barbados who addressed the conference, for example, was hissed repeatedly by AIDS militants when she called for compassion for "victims" of the disease. The speaker appeared to be mystified by the catcalls -- Were these people against compassion? -- but the objections came as no surprise to those long familiar with the semantic nuances of the HIV epidemic.

In no medical crisis has the politics of language become such a central issue, leaving journalists and researchers to tiptoe their way through a mine field of linguistic sensibilities.

'VICTIM' WAS A VICTIM

The first casualty of AIDSpeak was the word "victim." Although newspapers had for decades talked of cancer victims or earthquake victims without any problems, AIDS groups acted as though the term had been applied to them in an attempt to degrade and dehumanize.

AIDS sufferers were moving to assert their individual power both in changing society's then-hysterical attitudes toward HIV and in battling the medical debilitation wrought by the disease. "Victim" implied a powerlessness that was antithetical to these efforts. Sensitive to this, most reporters stopped writing about AIDS victims.

To be sure, the disappearance of a term considered derogatory by a minority group is not without precedent.

Afro Americans don't like being called Negroes and gay is preferred to homosexual. Webster's Dictionary still defines the verb form of jew as "to cheat by sharp business practice," but you don't see many transitive forms of jew in the daily press. Most Jews, blacks and gays agree on what they want to be called, and the news media have come to defer to these preferences. Semantic vigilantism around HIV, however, did not end with the term "victim."

WHAT TO CALL A TEST

When the AIDS antibody test became available, for example, AIDS organizers insisted that a positive result just meant that a person had been "exposed" to HIV. As one researcher joked, this made it seem like the HIV-positive person had wandered into a room in which the AIDS microbe had wafted around him, like the fragrance of gardenias.

The harsher truth was that a positive test result meant that people with HIV antibodies were infected with a virus that swam around their veins with life-threatening consequences. Using the word "exposed," of course, was supposed to shield people from this harsher reality.

That's the problem with all this word doctoring. In well-intentioned eagerness to use the language to bend the public mind, the politically committed sometimes make language more a tool of manipulation than illumination.

Nothing illustrates this more clearly than the continuing debates about what people with HIV are supposed to be called.

THE ALTERNATIVES

Content to discard "victim," most reporters started using the term "sufferer." The word police quickly attacked that, saying they didn't want AIDS patients to be characterized as suffering. Ever met a person with AIDS who didn't suffer either physically or psychologically, if not both? I never did, but "sufferer" is still a no-no.

The preferred usage then became the acronym PWA for "People With AIDS." Last year, however, AIDS advocacy groups decided that the public tended to think of PWAs as people lying around about to die. To change that perceived perception, they decided that newspapers should start using the term "People Living With AIDS," or PLWA, reasoning that people would start to think of them as L-ing beings rather than D-ing ones.

In their never-ending battle against an acronym-addled world, most copy editors drew the line at that point. All the nasty protests in the world won't persuade copy editors to add another group of capital letters to the avalanche of initials that readers are subjected to each day. Only an editor suffering from a brief burst of HIV-OBD is likely to let PLWA get into print.

Moreover, it's doubtful that all the initials in the world would change the perception of AIDS as a disease most people would want to avoid.

Getting to the Real Issues

What's most troubling about all the grousing from AIDS groups, however, is that it distracts attention from the truly profound issues confronting our society in the HIV epidemic.

At a time when the federal government is not devoting anything resembling adequate resources to prevent the epidemic's spread and to speed the development of treatments -- both issues that are life-and-death matters for hundreds of thousands of people -- it's difficult to take complaints about the word "sufferer" very seriously.

Don't expect the AIDS word police to put down their glossaries anytime soon, however. As gay writer David Israels recently observed, it's only a matter of time before some politically correct phrase-maker demands that those who have died from HIV be referred to as "bodies resting from AIDS."

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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