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When I started writing about AIDS seven years ago it was believed to be a medical condition. Today it is a multinational corporation complete with its own belief system, figure-heads, logos and even facial expressions...like a Walt Disney that markets pious morbidity instead of cheer.
At least once a week I announce to whomever will listen that I am retiring from AIDS journalism. That the whole business makes my head hurt, my eyes bug out, my stomach churn and my nostrils flare unattractively with repressed rage. The very idea that there must be an objective reality to AIDS and what causes it – a set of facts, a bottom line, seems too much to ask, in fact, seems beside the point. AIDS is a political movement. and as Milan Kundera once wrote: "...political movements rest not so much on rational attitudes as on the fantasies, images, words, and archetypes that come together to make up this or that political kitch."
The thing about political kitch is that it always symbolizes good: red ribbons, quilt, etc. = compassion, AIDS activists with clenched fists = fighting the system (unfortunately, in these cases' they are the system), Safer Sex campaigns = survival (this is the most important of all: one mustn't ever complicate matters by asking what, specifically, people are dying of. They will holler: "HIV!" like the Marxist will holler "Capitalism.") Very important that the enemy be singular, coherent, and absolute.
In the altered cognitive atmosphere of such an entrenched belief system, like zero gravity – facts have no weight. The intellectual terrain of the AIDS discourse is almost defiantly dishonest, which makes it impossible to write about, unless you're willing to get dragged into a shrill debate about your "motives". Write about the HIV debate and next thing you know you are a "follower" of Duesberg, an "advocate" which is considered a nasty thing – even though, all you really started out advocating was that facts be taken as facts. For instance: There is either a consensus that HIV causes AIDS or there isn't (there isn't), there either are cases of HIV-negative AIDS or there aren't (there are), AZT either prolongs life or it doesn't (it doesn't). And so forth.
When I started writing about AIDS seven years ago, it was a medical-, or at least health-related, condition. Today it is a multinational corporation complete with its own belief system, figure-heads, logos, and even facial expressions – like a Walt Disney that markets pious morbidity instead of cheer. There are some 93,000 AIDS organisations in the US alone. That's one organisation for every two and a half cases.
AIDS Inc. has proven vastly profitable not just in terms of money, but perhaps more importantly, that invaluable commodity: Glory. The opportunity to be in a position of perpetual Rightness, commenting publicly on others people's perpetual Wrongness. If it sounds like religion, that's precisely, in my opinion, what it is. We do live in a secular age, and we have no war, no global threat, no communism or fascism to direct our "moral" energies toward. Something had to spring up in the cultural and political void that opened up in the mid 1980's, and AIDS – with all its attending politics and phraseology – fit the bill precisely, because it offered something to believe in, something to "fight" for, something to measure one's goodness by. Suddenly, there was a fixed set of political mandates: Get tested, Have compassion, Be educated (terrified), use a condom (no, beyond "use a condom" – consider sex deadly, consider latex political etc.), raise awareness (what is awareness?), fight discrimination, raise money for "AIDS research", and finally save lives.
All of this sounds benign and sensible enough on the surface of things, but like with so many righteous cultural movements, one is struck by the sheer nastiness of the do-gooders in charge, particularly if one dares hold a different opinion, or hold up some fact that conflicts with their world view.
The world view in this case is basically that "everybody" is "at risk" for AIDS, no matter who or what, that the retrovirus HIV is universally deadly, that people must be "educated" away from their foolish sexual instincts, that "everybody" must fear HIV above all other contemporary threats, regardless of whether anybody they know has ever developed AIDS, and if they don't they are homophobic, cruel, racist, sexist, dangerous, and "in denial," that HIV is always far more widespread than all studies indicate, in every population in the world, and that far more "education" and "funding" is called for. The idea is that if we only had more money for AIDS research we would eventually find a "cure", and a "vaccine." Never mind the $22 billion already spent. That just barely scraped the surface of this depthlessly "mysterious" virus (which Peter Duesberg, who mapped the genetic structure of retroviruses, points out, has no more genetic information than any other simple retrovirus known to man...)
And finally, AIDS-think specifies that anybody who questions HIV's power is "dangerous and irresponsible." As AIDS expert David Baltimore put it in Nature recently, "There is no question at all that HIV is the cause of AIDS. Anyone who gets up publicly and says the opposite is encouraging people to risk their lives." Nobody has countered this insidious accusation more bluntly than the spirited Nobel Laureate and AIDS dissident Kary Mullis, who shot back: "So what? I'm not a lifeguard. I'm a scientist. And I get up and say exactly what I think. I'm not going to change the facts around because I believe in something and feel like manipulating somebody's behaviour by stretching what I really know." (California Monthly, Sept. issue) Mullis meanwhile, who won the Nobel prize for his discovery of PCR (Polymerase Chain Reaction), which has caused a revolution in biology, has been said by the AIDS establishment to be too much of a womaniser to have his views on AIDS taken seriously.
Finally, there is this strange and murky idea that disenfranchised groups, women, lesbians for instance, really have AIDS too, but nobody is admitting it. I sat on a "Women and AIDS" panel at a major university recently and four out of five questions posed by the audience concerned the "lack of attention being paid to lesbian AIDS". I finally said that I thought the reason was that there are only a handful of cases – five I believe, at which I was summarily shouted down by the panelists. "WE DON'T KNOW BECAUSE IT HASN'T BEEN RESEARCHED!" they yelled. It has, I assured them. I attend the International AIDS Conference every year and I'm telling you, several studies have been done... "IT HASN'T BEEN RESEARCHED BECAUSE NOBODY CARES ABOUT LESBIANS..." It's the same with heterosexuals, teenagers, women in general, all of Africa, and now Asia. It's always really bad and getting worse. Even when it's getting better. AIDS cases in the US have been on a steady decline since 1990. Yet funding has been on the rise. And piousness has gone through the roof.
In the end, you throw up your hands, because what can you say? How can you argue with statistics that are constantly inflating invisibly, always infinitely higher in "reality" than they appear because of the inherent "racism, sexism, and homophobia" of the medical establishment?
Nothing ever is what it is. For instance, I picked up a recent issue of POZ magazine, a new, glossy, celebrity-studded magazine devoted entirely to AIDS. Here are a few samples of their curious reporting:
"While the number of HIV cases identified in China through official testing reaches only 1,361, government statistics place the actual tally as high as 11,415 and predict that the figure could surpass 253,000 by the end of the decade if preventive measures are not taken."
11,415? Why? Where do the figures come from? There is no attempt to explain or qualify. How many millions of people live in China? If only 1,361 have tested HIV antibody positive in ten years, that's pretty good news. (If you believe HIV causes AIDS.)
Or how about this: The face on the cover of POZ is a fellow named Pedro Zamora, HIV positive "heartthrob" from an MTV program called "Real World," who doubles as an AIDS educator. The interviewer asks,
"... Many of those who are asymptomatic for HIV for a decade or more don't classify themselves as having AIDS. Do you differ with their thinking?"
To which Zamora responds, "No. That's what they're comfortable with, and it's about whatever makes you feel safe. I just didn't feel comfortable with that definition; probably because I didn't see a difference politically. I didn't agree with the definition the government had of AIDS. It was too narrow, excluding a lot of people, women especially, making it hard for them to live and do what they wanted to do by denying them the benefits and assistance they needed."
Is AIDS a medical condition or a welfare program? The CDC broadened the definition recently to include, among other things, cervical cancer and pulmonary TB, after activists pressured them not to "exclude women." Wouldn't women wish to be excluded from a disease that is said to be almost universally fatal? Since when is disease defined according to political dynamics? Why is AIDS so frighteningly much bigger, sociologically, if not statistically, than any other disease? Can you imagine a glossy magazine called "Trep" devoted exclusively to musings on syphilis?
POZ magazine is a microcosm of the madness that has become AIDS: A slick, glossy, celebrity-studded death culture with its devotees perpetually interviewing each other about what it's like to be so concerned, so angry, so committed to "saving lives," so fabulous. The magazine is floated by pharmaceutical ads for AIDS medications, life insurance policies, and even a service called "Lasting Impressions" that sends letters to your loved ones on specific dates after your death. One ad shows a naked man holding his head to his knees. "Terminally ill..." the text reads, "We feel that our lifeline program meets the special needs of the gay terminally ill, both financially and personally..." (Highlights include playwright Larry Kramer describing how he took his first AZT capsules in Barbara Streisand's guest bathroom, hoping they wouldn't make him sick.)
POZ boasts photography by Bruce Weber and Herb Ritts, and features brief, glittering profiles of the 50 most influential AIDS policy makers, including Robert Gallo, Tony Fauci, Sam Broder, Jonathan Mann, Mathilde Krim, David Barry of Burroughs Wellcome, and of course, the high elite of New York AIDS activism, Peter Staley, Mark Harrington, and Greg Gonsalves, who departed from Act Up to form the pharmaceutically-funded, by-invitation-only AIDS "activist" group TAG (Treatment Action Group.) TAG (shall we call them "price-TAG") has received thousands from Burroughs Wellcome and Lord knows who else, yet they maintain their leftist, morally superior stance. They allegedly meet in a New York Penthouse apartment and have filmed themselves aboard Staley's father's yacht, taking psychedelic drugs and ruminating about AIDS. Radical Chic, I guess. They do not apologise for their brazen relations with the pharmaceutical industry. When TAG took its first $10,000 from Burroughs Wellcome, Staley was quoted as saying: "It's hard to find an AIDS organisation that hasn't taken money from Burroughs Wellcome." (With activists like these, who needs an establishment!)
Staley is famous for chaining himself to a radiator to protest the price of AZT, and rubber-stamping a transference of $1 million from Burroughs Wellcome, via ACT UP, to AmFAR, redefining forever the meaning of the word "activist." (And speaking of ACT UP, let's not forget that it was they who tried to get the Concorde team to halt the study prematurely, after one year I think, on "ethical grounds.") Gonsalves – oh what a coincidence – was recently quoted in an article that questioned the morality of SPIN's AIDS column, and our continuous probing of the question of whether HIV is the cause of AIDS. "SPIN's AIDS column," he told Option magazine, "is a public health menace." End quote, end paragraph, end issue. No journalist in his or her right mind would think to ask a real life "AIDS activist" to substantiate his or her pronouncements. To discuss the actual facts of the HIV debate. Not when there's Holy War going on.
And not to be left out of any opportunity for publicity is the ever ubiquitous Martin Delaney, author of many a poisonous letter to various publishers, among them the publisher of SPIN, Bob Guccione Jr., lacerating the AIDS column, myself, and all of my sources, (who Delaney insists are not "real AIDS experts," apparently oblivious to the possibility that such experts may be incapable of impartial commentary...) Delaney sent out a lengthy "discussion" paper in response to one of my articles, in which he listed all the "HIV heretics" and proceed to slash, burn, denounce, and ridicule the whole stinking lot of us. He has also referred to me personally as a "threat to public health," and suggested that I should be banned from writing about AIDS. It is indicative of Delaney's fundamental authoritarianism that he never contacts the offending journalist, always the boss. He appears to spend most of his time writing long, pompous letters attacking investigative reporters who write bad things about his friends. I have one in my files that is addressed to John Crewdson's editor at the Chicago Tribune, threatening to sue the Tribune for harassing Gallo (a close friend of Delaney's) and claiming he was going to calculate how much time Crewdson's investigations into the discovery of HIV had cut into time that Gallo might otherwise have spent "saving lives".
At last year's AIDS conference in Berlin, Delaney seized UK AIDS dissident Joan Shenton by the wrist and shook her, enraged at her suggestion that there were very few heterosexual, no-risk AIDS cases in Britain. "WHO CARES ABOUT BRITAIN," he thundered, as the horrified Shenton begged, "Don't touch me!"
The attacks are typically vicious and ill-informed, and it does get very unpleasant, but as a general rule I try not to break much of a sweat about criticisms from folks who are on Burroughs Wellcome's payroll. (Delaney's organisation, Project Inform, has accepted about $150,000 from the makers of AZT.) One rarely gets attacked in this business from people who are not part of what my dear friend, HIV antibody positive, former ACT Upper G. Steven Rose so aptly calls "La Machine."
I remember arriving at an AIDS yippo condomania hoo ha red-ribbon gala a few years ago, (making an exception to my rule never to attend such events only because the Pet Shop Boys were playing) and having a discussion with one of the organisers, who was a very thoughtful man. He said that the very mention of my name broke up a dinner party he had recently hosted. One of his oldest friends apparently declared that I was "the worst AIDS journalist in America," whereupon he came to my defence, which resulted in such mayhem that several people had to be ejected from the premises. Geez. You'd think I was advocating HIV quarantines or buttock tattoos or something. I'm really a very mild-mannered person. I don't have nose rings or anything. All I ever did was follow and report, with what some may consider excessive attention, the vital debate about whether HIV is the cause of AIDS. And whether AZT is a viable therapy for those who are HIV antibody positive. And whether being HIV antibody positive is the same as "having" HIV. And whether "having" HIV necessarily means your immune system is decaying. Etc. I consider all of these questions to be very straightforward, logical, and of obvious importance. I simply picked up a thread and followed it.
My father is a journalist and when I asked him, as a young girl, to impart the wisdom of the trade, he said: "I can sum it up in three words. Penetrate the ostensible."
Seven years have passed since I accidentally set out across this bizarre minefield. I find it hard to look back – to distill the experience into wisdom. Like that faceless woman in the prison queue who turned to the poet Anna Ahkmatova during the Yehzovain terror and asked in a whisper: "And can you describe this?"
One thing I've learned is what it's like to be hated – to be saddled with accusations of murder from people you've never even met, and to try to understand where it's coming from. To try not to let it destroy you, or guilt-trip you into silence, or, like Chinese water torture, drive you mad, or make you think you must be mad, because either you are or everybody else is. That's what dissidents have to deal with.
Me, for one, I never handled it very well; my desire to be liked is totally at odds with my compulsion for holding culturally impermissible thoughts. I remember sleepless nights, guilt, and anxiety so severe I could barely function at times. The hatred seemed to be everywhere – a friend had a blind date run out on him at the mention of his acquaintance of me. At the offices of SPIN – the scribbled remarks all over my copy, in the margins, in red, furious ink, in response to which I just waved scientific studies and pleaded: but READ this, READ that, I don't MAKE THIS STUFF UP YOU KNOW.
A copyeditor went so far as to contact one of my closest sources, the late, Michael Callen, and request, on behalf of gay men everywhere, that he never speak to me again. Another colleague virtually attacked me on the street and hollered that one of my articles, detailing the HIV debate was "the most homophobic thing he had ever seen," and that "the entire community" hated me. He resigned shortly thereafter. Another editor said that just working at the same place as I did was ruining his "reputation in the community," and requested not to have to edit me anymore. Another who came to work temporarily at SPIN, from the progressive, liberal-left Village Voice stomped right up to the managing editor and announced that she did not want to be let anywhere near that AIDS column of ours because it was so, get this, amoral. And for my first long article critiqueing the science of AZT, I was officially "denounced" by the AIDS Coalition To Unleash Power (ACT UP), which is, I suppose, an honour of sorts.
The most insidious characteristic of any righteous new movement is that it maintains its power by employing the twin tactics of terror and guilt. Terror of the "great threat" must first be instilled, upheld by the societal guilt that comes with questioning the validity of the threat. To question the validity of the threat – in this case to discuss actual AIDS figures rather than hysterical projections – becomes equated with badness, wrongness, grave irresponsibility, moral collapse – and in this case, with homophobia, racism, right-wing fanaticism, and ultimately, that catch-all phrase: murder.
The so-called AIDS dissidents have been accused in this manner for years, and it is this magnetic field of political correctness and reflexive morality surrounding AIDS that has kept the real science from being conducted, the real articles from being written, the real questions from being asked. Ask yourself: Who is guilty? Who has acted irresponsibly? Ten years and $22 billion have been wasted. Countless thousands have been poisoned, to varying degrees, by AZT, ddI, ddC and other toxic and ineffective AIDS medications. Countless millions worldwide have been terrorised by this vague, ever-expanding, multi-dimensional death sentence called HIV, and those who have tested positive have had to struggle against a merciless tide of cultural messages telling them they're going to die. These people have taken highly toxic medications out of fear, many have committed suicide, and yet, and yet and yet, it is the "dissidents" who are in the cultural doghouse for "letting people think that HIV is harmless and that they needn't use condoms."
It seems to evade our critics that there is real, actual, quantifiable doubt as to whether HIV causes AIDS, and that if it isn't, it would be the height of scientific or journalistic immorality to continue to pretend that it does strictly to enforce sexual behaviour control. On some level they seem to be saying: What we mean by that HIV causes AIDS is that we have all agreed that it does, and until we agree otherwise, that is reality.
The real problem is that the very notion of an objective reality, of truth, independent of media projections, is fading out of the universe. The real problem is that at the end of the day, truth is of so little interest to so many people. When AIDS dissidents are attacked for being "dangerous and irresponsible," as we invariably are by the keepers of La Machine, it is not so much because they absolutely know that HIV causes AIDS (how could they?) as because they resent the impact the question itself may have on a population they deem in need of (their) behavioural guidelines. Truth is often disruptive, in fact you may even argue that lies are essential to a functioning society. Plato argued precisely that in The Republic, and indeed the text is said to have had a great influence on at least one political movement – fascism. (The Noble Lie)
But all of that aside, the only thing that matters is how or whether people are staying alive in the age of AIDS. If I hadn't been poking around in it for seven years, if I hadn't heard countless versions of the same story, namely that people who believe in HIV as a death sentence wind up dead and people who don't don't, if I didn't know so many people who have been HIV positive and healthy for up to fourteen years without "doing" anything, and others who took AZT and died in a few months, if I didn't see the terror, pain and confusion caused by the false and shameless marketing of AZT, and so on and so on, then maybe I would be nicer, better, more objective, more responsible. But you cannot ask a journalist not to engage as a human being, not to make decisions, not to have passions and opinions. The journalists on the other side are loaded with theirs – it's only because they repeat the party line that they are considered objective.
The dissidents are not crazy, immoral, dangerous, irresponsible, homophobic, racist, deluded, flat-earthers, or holocaust revisionists. (I forget what else we've been called.) Nor do we pretend to be saints. We're just people – scientists, journalists, activists, and HIV antibody positives – who agree that the pursuit of truth in the question of what really causes AIDS is vital, inevitable, and therefore just. Nothing weird, nothing shameful, just tracing the dots, trying to attain clarity. All the other rhetoric, all the ribbons, all the quilts, can wait. No reason people can't keep their condoms while the truth is being sought.
I propose a new set of moral guidelines: Anybody who dares step up at this point and attempt to obstruct the HIV debate should be considered flat-headed, dangerous, demented and ridiculous, and should be placed inside a glass case at a historical museum. Then the people can get on with the obvious task at hand: solving AIDS. Not "spreading the message about HIV," but solving AIDS.
My most cathartic moment of 1994 came at a conference sponsored by the AAAS (American Association for the Advancement of Science) at which I spoke. The panel was comprised of both dissidents and party-liners. Peter Duesberg, in rare form, had the audience actually laughing at his jokes. Finally, beet red with rage, one of the "AIDS experts", Warren Winkelstein, leaned forward and scolded Duesberg: "Some of us don't appreciate you making jokes and laughing about this very serious issue," he scoffed. At which point Nobel Laureate and PCR inventor Kary Mullis, also on the panel, turned to him and said:
"Sir, we're not laughing at the issue, we're laughing at you."
© 1994 by Celia Farber
Originally published in Continuum magazine