AIDS: The Linguistic Battlefield
Michael Callen
Singer, songwriter, AIDS activist, and author Michael Callen (1956—1993) is recognized as one of the first advocates of safe sex, a cofounder of the People with AIDS self-empowerment movement, and a proponent of community-based AIDS research. Diagnosed with gay-related immune deficiency (GRID) in 1982, Callen continued to make significant contributions to the gay and lesbian movement before succumbing to the disease in December 1993. Fighting what he felt was the linguistic maneuvering and censorship practiced by the media, the Public Health Service, and mainstream AIDS organizations, Callen coined the term “people with AIDS” (PWAs) to replace the earlier semantically loaded term “AIDS victims.” His influential writings and songs, his appearances in numerous films and documentaries, and his work with national gay and lesbian organizations attest to Callen’s dedication to the shaping of the United States response to AIDS and his own struggles for gay identity and self-hood. In “AIDS: The Linguistic Battlefield,” Callen calls attention to how the language of AIDS became a powerful tool in its recognition as a non-gay-male disease.
AIDS is the moment-to-moment management of uncertainty. It’s like standing in the middle of the New York Stock Exchange at midday, buzzers and lights flashing, everyone yelling, a million opinions. AIDS is about loss of control—of one’s bowels, one’s bladder, one’s life. And so there is often a ferocious drive by those of us with AIDS to exert at least some control over it. When I was diagnosed in 1982, I decided that I’d have to pay close attention to the language of AIDS—to keep my wits about me in order to see beyond the obfuscating medical mumbo-jumbo meant to dazzle me into a deadly passivity.
AIDS is a sprawling topic. War is being waged on many fronts. From the beginning of this epidemic, there have been a number of important battles over how we speak about AIDS which have had subtle but profound effects on how we think about—and respond to—AIDS. These linguistic battles have also affected how those of us diagnosed as having AIDS experience our own illness.
In the early seventies, the gay liberation movement won a smashing victory when it forced the American Psychiatric Association to declassify homosexuality as an illness. But with the creation of a new disease called G.R.I.D., or gay-related immune deficiency, as AIDS was first termed, in an instant, those of us whose primary sexual and affectional attraction is to members of our own sex once again became medicalized and pathologized— only now we were considered literally, as opposed to merely morally, contagious.
Soon, gay-related immune deficiency was discovered in nongay people and a new name for this disease had to be found. All factions were poised for a political battle over the new name. Instinctively, those empowered to create and police the definition of AIDS (and those who would be profoundly affected by it) were aware that the new name would affect how the epidemic would be handled by the federal government and the “general” (meaning, generally the non-homosexual, non-IV-drug-using, rest-of-you) public.
In the end, a neutral sounding, almost cheerful name was chosen: A.I.D.S. Words can resonate with other words and take on subtle, sympathetic vibrations. AIDS: as in “health and beauty aids” or, to retain some of the sexual connotations of the disease, “marital aids.” Or AIDS: as in “aid to the Contras.” Or, “now is the time for all good men to come to the aid of their country.” “AIDS” sounded like something…well, helpful.
My highly trained eye can now spot the letters A-I-D on a page of newsprint at lightning speed. It’s amazing how often those three letters appear in headlines: afrAID, mislAID, medic-AID, pAID—even bridesmAIDS. Every time I would hear a newscaster say “The president’s aide reported today . . .,“ I’d be momentarily disoriented by the linkage of “president” and “AIDS.”
It’s interesting to speculate, by the way, what the public response to AIDS might have been had the name proposed by a group from Boston prevailed: herpes virus reactivation syndrome. Prior to AIDS, the American public—general or otherwise—had been barraged by Time magazine cover stories about another fearsome, sexually transmitted epidemic: herpes. If those with the power to name the current plague had linked its name to the herpes epidemic, getting the American public to take AIDS seriously might not have been quite so difficult. One important consequence (some would say cause) of the profound immune disturbance we now call AIDS is that latent herpes viruses are reactivated, leading to a vicious cycle of immune suppression. Had the name herpes virus reactivation syndrome, or HVRS, been selected instead of AIDS, it might not have taken so long to convince Americans to support research into a disease which, by name at least, everyone was theoretically at risk for. But perhaps because HVRS, as an acronym, does not roll tripplingly off the tongue, the more neutral sounding AIDS, was chosen.
WHAT THE “L” IS GOING ON HERE?
The most momentous semantic battle yet fought in the AIDS war concerned the naming of the so-called AIDS virus. The stakes were high; two nations—France and the United States—were at war over who first identified (and therefore had the right to name) the retrovirus presumed to cause AIDS. Hanging in the balance was a Nobel prize and millions of dollars in patent royalties.
U.S. researcher Dr. Robert Gallo had originally proposed that HTLV-I (human T-cell leukemia virus) was the cause of AIDS. Meanwhile, scientists at the Pasteur Institute isolated a novel retrovirus, which they named LAV, to stand for “Lymphadenopathy Associated Virus.” The U.S. scoffed at French claims, arrogantly asserting that HTLV-I or HTLV-II must be the cause of AIDS. When it became obvious that neither HTLV-I nor II could possibly be the cause, if for no other reason than because Japan (where HTLV-I and II are endemic) was not in the midst of an AIDS epidemic, the U.S. had to find some way to steal both LAV itself as well as the credit for having discovered it first, while covering over the embarrassing fact that they had proposed the wrong virus as “the cause” of AIDS.
What to do? In an election year (1984), it was simply unthinkable that the French could so outshine U.S. medical research. The United States hit upon a brilliant solution. Gallo simply renamed LAV “HTLV-III” and Secretary of Health and Human Services Margaret Heckler staged a preemptive press strike. She declared that another achievement had been added to the long list of U.S. medical breakthroughs: “The probable cause of AIDS has been found—HTLV-III, a variant of a known, human cancer virus…”
The ploy was certainly ballsy. And looking back, amazingly successful.
But what was going on here? The L in HTLV-I and II stands for leukemia, since it proposed that HTLV-I and II account for a particular form of leukemia. Unfortunately for the perpetrators of this massive fraud, it just so happens that leukemia is one of the few diseases which is not a complication of AIDS. So, in order to retain the symmetry of nomenclature, Gallo quietly proposed that the L in HTLV-III and HTLV-IV now stand for lymphotropic instead of leukemia.
It is now widely acknowledged that HIV is not a member of the HTLV family at all. It is a lentivirus. But the consequences of Gallo’s bold attempt at semantic damage control are still with us. The Index Medicus listing for AIDS still refers to HTLV-III, not HIV. The legal dispute was eventually settled by the state department; the presidents of the U.S. and France signed an agreement whereby their nations would share credit and royalties, a settlement potentially worth billions. But what was the cost in human lives lost from research delays caused by the willful misclassification of HIV?...
WHO HAS THE POWER TO NAME?
The question of who has the power to name is an ongoing turf battle between people with AIDS and those who insist on defining us as victims. I was at the founding of the people with AIDS self-empowerment movement in Denver, Colorado, in 1983. When the California contingent insisted that we make part of our manifesto the demand that we be referred to as “people with AIDS” (or the inevitable acronym “PWAs”) instead of “AIDS victims,” I must confess that I rolled my eyes heavenward. How California, I thought.
But time has proven them right. Americans, whose ability to think has been dessicated by decades of television and its ten-second-sound-bite mentality, think in one-word descriptors. Someone on the TV screen must be labeled: a feminist, a communist, a homosexual, an AIDS victim. The difference between the descriptors person with AIDS and AIDS victim seems subtle until one watches oneself on reruns on TV. To see oneself on screen and have the words AIDS victim magically flash underneath has a very different feel about it than when the description person with AIDS appears. Its very cumbersomeness is startling and makes the viewer ask: “Person? Why person? Of course he’s a person…” In that moment, we achieve a small but important victory. Viewers are forced to be conscious, if only for a moment, that we are people first.
The founding statement of the PWA self-empowerment movement (known as the “Denver Principles”) is quite eloquent on this point:
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.”
This statement was further refined in the founding Mission Statement of the National Association of People with AIDS
(NAPWA):
We are people with AIDS and people with AIDS-Related Complex (ARC) who can speak for ourselves to advocate for our own causes and concerns. We are your sons and daughters, your brothers and sisters, your family, friends and lovers. As people now living with AIDS and ARC, we have a unique and essential contribution to make to the dialogue surrounding AIDS and we will actively participate with full and equal credibility to help shape the perception and reality surrounding the disease.
We do not see ourselves as victims. We will not be victimized. We have the right to be treated with respect, dignity, compassion and understanding. We have the right to lead fulfilling, productive lives—to live and die with dignity and compassion.
In a gratuitous aside in his best-selling AIDS epic, And the Band Played On, Randy Shuts attacked the right of people with AIDS to choose how they wished to be referred to. Completely twisting the empowering impulse of people with AIDS to wrest some control of our lives, Shilts accused us of attempting to minimize the tragedy of AIDS:
AIDSpeak, a new language forged by public health officials, anxious gay politicians, and the burgeoning ranks of “AIDS activists.” The linguistic roots of AIDSpeak sprouted not so much from the truth as from what was politically facile and psychologically reassuring. Semantics was the major denominator of AIDSpeak jargon, because the language went to great lengths never to offend.
A new lexicon was evolving. Under the rules of AIDSpeak, for example, AIDS victims could not be called victims. Instead, they were to be called People with AIDS, or PWAs, as if contracting this uniquely brutal disease was not a victimizing experience. “Promiscuous” became “sexually active,” because gay politicians declared “promiscuous” to be “judgmental,” a major cuss word in AIDSpeak. The most-used circumlocution in AIDSpeak was “bodily fluids,” an expression that avoided troublesome words like “semen.
Thus, the verbiage tended toward the intransitive. AIDSpeak was rarely empowered to motivate action; rather, it was most articulately pronounced when justifying inertia. Nobody meant any harm by this; quite to the contrary, AIDSpeak was the tongue designed to make everyone content. AIDSpeak was the language of good intentions in the AIDS epidemic; AIDSpeak was a language of death.
Shilts notwithstanding, there is now a movement to further emphasize hope. In some quarters PLWAs and PLWArcs have entered the language: Persons Living With AIDS and Persons Living
with ARC, respectively. There is also a new movement to organize all individuals suffering from conditions related to immune deficiency. Acronym conscious, its leaders say they are “PISD” (pronounced “pissed”), which stands for “Persons with Immune System Disorders.”
The New York Times, whose editorial policies influence other newspapers, has been drawn into the battle being waged by people with AIDS to reclaim some small amount of linguistic control over their lives—a battle similar to one being waged by gay people over the Times’s intransigent use of homosexual instead of gay. The following exchange concerns the Times’s obituary of the first president of the New York People with AIDS Coalition:
December 1986
We protest the New York Times’ not listing Kenneth Meeks’ surviving life-mate of over ten years, Mr. Jack Steinhebel. Upon calling your office, I spoke to “Fred,” who told me that it was the policy of the Times “not to include lovers” as survivors. That policy is totally inappropriate in that it lacks sensitivity and basic respect. “Fred” also informed me that in his “six years at the Times and with hundreds of phone calls the policy had not changed” and that we should “not expect it to change in the future.” How sad.
Finally, the labeling of People with AIDS as “victims” in Ken’s obit was incorrect and more so in light of Ken’s extensive work to end such practices. We are greatly disappointed by such journalism.
Sincerely,
Michael Hirsch
Executive Director
People with AIDS Coalition
The New York Times responded:
No slurs were intended, but I can well understand your feelings about Kenneth Meeks’s obituary. We are reviewing our obituary conventions regarding mention of intimates other than blood relatives and spouses. I cannot predict what we will decide to do, but think you have contributed to consciousness-raising.
As for the word “victim,” I cannot agree that it is pejorative. Along with most of society, we have long written about “stroke victims,” “heart attack victims” and “cancer victims.” The logic is equally applicable to AIDS, and I am uncomfortable about drying [sic] idiom for any cause, no matter how meritorious.
Sincerely,
Alan M. Siegel
News Editor
New York Times
In the ensuing three years, there has been no change in the Times’s policy of refusing to acknowledge the status of “intimates other than blood relatives and spouses” (now, there’s a mouthful) in the obituaries of lesbian and gay people. If a change of policy so obviously just and easy to accommodate cannot be made by the Times, one holds out little hope that they’ll ever use a descriptor other than victim when referring to PWAs.
Is there anyone who can talk about AIDS and emerge from the battle unscathed? Probably not. We all want to control AIDS somehow, and at times language seems to be our only weapon. But we must not try to master AIDS by crushing its complexities, mysteries, and terrors into convenient labels that roll trippingly and with false authority off the tongue. We must always speak fully and carefully about AIDS, even if that often requires a mouthful—cumbersome constructions full of words strung together by hyphens—to say precisely what we mean. The stakes are simply too high to do otherwise.
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