Finding ACT UP – Part Two – Rage
[Read Part One here. Full disclosure: The author is a member of ACT UP New York, therefore possibly not entirely devoid of bias. This piece expressly does not carry the sanction of ACT UP, nor has it been reviewed or approved by, or speak for, any agency thereof. All weaknesses and errors, and there are many, are the author’s.]
If the gay community – or for that matter the more variegated HIV/AIDS community – were entirely honest with itself, we would realize one central fact: we’re not actually “fighting” the war against this disease anymore, unless that fight is the personal one; our communal efforts are at best inadequate, but really they are neither communal nor even efforts. There are no more heroic or miserable Thermopylaes, only the bloody fields of Flanders, far away, extracting their toll at a remove.
We no longer fight AIDS. What we do instead is curate it.
And once a year, unless we forget, we wear a small red object, a poppy for Flanders, a ribbon for AIDS. Remarkable the synchronicities.
Anecdote has it that during the Great War, the cannonfire and explosions from the fighting in Flanders could occasionally be heard in London; true or not, one might reasonably conclude that Whitehall or Westminster in 1914 thereby enjoyed a slight crisis awareness advantage over, say, Chelsea or The Castro today, a century later. The boys there are, too often and too sadly, fucking clueless in more ways than one; without even the at least somewhat arguable pretext of being altogether really rather busy ruling an Empire on which the sun never set, and never would. Wider still and wider, Britannia ruled the waves; and it would ever be thus. Remember that last sentence, it matters.
The truth is that we are in a war, whether we choose to acknowledge and fight it or not. Gallipoli in all its despairing carnage is over; Grindr is our battlefield and just one battle gay men are losing, certainly here in the United States. Not to pick on Grindr alone, entirely worthless though it may be – unless to make Twitter seem of positively Homeric depth by comparison – not least because there are many more ways to find Mr. Right Now. A few minutes on Eighth Avenue do normally suffice. Grindr and its cousins are of relevance only in that they contribute to the atomization of gay society into a scattering of random bodies, each synced with one flickering screen or another, men neatly lined up for your shopping convenience and mine.
We have come to accept, many of us, that HIV is a permanent fixture in the landscape of our lives (if we don’t think of it as history altogether), an ugly old building in that questionable part of town where we hope never to live, until a few steamy nights and days and more nights, lust blurring into exhaustion, of was-it-bareback-I-don’t-remember-too-shitfaced sex with random hunk #3, #7, #9, we do. And then the remodel begins, we make ourselves comfortable, and I suppose learn to accept that old friends won’t visit in the new place. Until – hey dude, you here? – there they are at the corner
delicatessen specialty pharmacy. Or at any of the innumerable HIV-centric, carefully ghettoized social spaces, the very ones we used to avoid when we were still, how does the phrasing go again, ‘clean’.
Avoid in fact, how tragically poetic, like the plague.
I call these spaces, whether physical or of the mind, the AIDS Industrial Complex; here in New York, likewise in other large cities, it is perfectly possible to live an entire life within the confines the virus creates, to engage only with others similarly situated, therapized and welfare-ized, to spend your days in the cramped but familiar places set aside for us, warehouses for those not quite dead yet. Virtual ghettos, hidden in the shadows, sustained by the cold charity of the state and the colder fear and loathing between those inside and those not. If that sounds dystopian, perhaps it does, but recall that familiar and family have the same root, and that even a jail cell can be made tolerable, even comfortable, by the slow decay of time.
This is a problem, and not entirely the fault of vapid Chelsea boys or whichever inch-deep, mile-wide stereotype comes to mind. It also lies quite squarely with the au currant HIV activist milieu and our fondness for esoteric babble, the jargon we use to communicate amongst ourselves. Most of the HIV/AIDS advocacy orgs, including ACT UP, expect as of right for our twaddle to be comprehensible, because crisis. Effective communication however doesn’t actually work that way, not in this world born of MTV and midwifed by Twitter. Advertising genius David Ogilvy may be long dead, but his sharp observation that “you can‘t bore someone into buying your product” remains as relevant today as it ever was.
Test the concept: randomly ask Joe Homo on the street what sero-positioning is, or MSM, or where exactly he would rank HIV criminalization, stigma, PrEP, whatever comes to mind from the activist box, on his list of priorities.
I’ll volunteer the answer: he likely won’t even know what you’re talking about, and that is in large part our fault, not his. We’re the ones who are failing here; we wonder why no one bothers to pay attention all the while we broadcast gibberish. We talk about crisis, generally a decent way to pique some interest at least, only to drift off into obscure Latinate cant that even many of us barely understand, medieval monks mumbling prayers to painted statues on the strength of phonetic memory alone. Clearly, the exquisite refinement of said insider verbiage is of greater weight than this crisis; or what other message does it send when we don’t manage or even try to speak the language of whomever we’re trying to get to listen?
There was a time we were able to do so, with stunning results on an aesthetic level alone. The art above, by Avram Finkelstein of ACT UP baby Gran Fury, can be found in lavish homes, grand galleries and museums scattered across the modern world.
Why? Because it’s simple, memorable and dare I say it, hauntingly beautiful.
Problem is, the HIV ghetto is getting a bit crowded these days, what with new infections overall – in the United States – numerically roughly stable at around fifty thousand per annum, even down in all major demographics – but rising, inexorably as the tides, among gay men (and, to be sure, among transfolk, especially those of color; if I don’t write about them in detail, consider the omission illustrative of my own ignorance, not deliberate oversight). Similar trends obtain in Europe [.pdf], across the Americas and Australasia. The convenient fiction “it’s not a gay disease, bro” I’m afraid is headed to wherever we buried disco’s dismembered corpse, here from sea to shining sea and across the western world.
Don’t believe me? No problem, I brought pictures.
Global HIV incidence (1)
U.S HIV Prevalence (2)
Yes, you’re reading the charts (3) correctly: the HIV infection rate of gay men in North America as a whole is eclipsed only by those in the Caribbean and sub-Saharan Africa. We’d catch up as a continent if the Canadians weren’t as ever and in all things so slow.
Meanwhile, the major U.S. LGBT rights orgs – and media, and not-for-profits, and celebrities, pretty much every other scintilla-of-influence-haver you might care to mention (with the notable exception of bloggers Andrew Sullivan and Joe Jervis) have taken, to say it with more politeness than is warranted or due, a leave of absence from the permanent plague.
The reasoning being, I suppose, that if you concern yourself with HIV, you are assumed to have HIV, and there go your chances of getting laid over the weekend.
On an institutional level, again merely a crazy guess, it might be easier to raise money for safe, essentially conservative causes like marriage or serving the flag than anything even remotely having to do with fucking ass. Raising money however is what advocacy organizations primarily do.
Weak tea as excuses go, one would think.
So fuck politeness. If someone, anyone, doesn’t consider it a howling failure that (4) …
“a 50% reduction in the rate of new HIV infections (HIV incidence) has been achieved in 25 low- and middle-income countries between 2001 and 2011. More than half of these countries are in sub-Saharan Africa where the majority of the new HIV infections occur. In a further nine countries the rate of new HIV infections fell steeply—by at least one third between 2001 and 2011.”
…..while, say, the Human Rights Campaign...
….America’s largest, richest and most powerful LGBT rights group, comfortably ensconced a few blocks from the White House…
..with a $45 million annual budget in 2012 [.pdf]…
...does sweet fuck-all (5) against an existential threat to its core constituency, maybe they should discreetly inquire how many and which of their ancestors were in fact livestock.
Not to speak ill of livestock, mind you, which in many cases serve a useful purpose, are often tasty and certainly send out fewer fundraising emails and/or self-congratulatory press releases. But if this staggering discrepancy in outcomes between an immensely wealthy, powerful and advanced society like ours and that of small, threadbare polities in Africa doesn’t cause anyone at least a moment of disbelief, please, grab a towel and get the fuck out of the gene pool.
Simply put: when a desperately poor country like Malawi is able to reduce new HIV infections overall by 70% in a decade [.pdf], while gay American see our numbers rise over the same time (actually, since 1992, which would make it two decades and change and therefore, well, even worse) it is not a communal failure so much as one of leadership. One that goes far beyond HRC, I’d add. Where is our rage?
No sugarcoating it: silence on the second wave of AIDS is a failure of leadership. Abject, cowardly and deadly. Silence still equals death.
Failures of this magnitude have origins, but more dangerously, they also have consequences. So let’s take a quick peek over the edge of the abyss.
Here in New York City, HIV prevalence – that is, the ratio of a given population infected with the virus – for gay men is somewhere between one in four and one in three. That’s the baseline we’re working from; let’s just call it Factor One.
Now consider those new infections adding to the pool. They exceed mortality rates – the comparative lifespans of HIV+ and HIV- men are near equivalent – so the pool is already growing. That would be Factor Two.
If new infections were stable, we would still see the absolute number and relative percentage of infected gay men grow. But they are not stable, accelerating instead year over year; 12% between 2008 and 2010, the most recent years for which we have reliable data. What should hurt your soul, it does mine, is that for young men – 13-24 – the increase is 22%.
In other words, every year, the percentage of gay New Yorkers infected grows. The math is the same as compound interest, which Albert Einstein called – perhaps anecdotally – the most powerful force in the universe. Or even more simply: currently, about 2.5% of all U.S. gay men are newly infected every year. Between 20 and 25% already are. Just extrapolate that out for a decade or two. Overall population growth, by the way, in the United States last year was 0.7%, New York City’s roughly the same, which may or may not be an offsetting factor.
In sum, we are looking at a scenario where one in two gay New Yorkers will be HIV+ by the end of this decade, certainly midway through the next. Not could be – will be. As goes New York, so goes the nation.
Unless the trendlines [.pdf] change, these dates aren’t conjecture; what they are is a forecast. A simple function of two factors: increased lifespan and more and more new infections. One of the two has to go down, and my guess would be that we’re all actually quite okay with the increased lifespan thing.
The rest of the country – or for that matter the world – may not be as stylishly debauched as we New Yorkers, nobody is, but equally, no place is all that far behind. Kids in idyllic Connecticut mill towns or the leafy gilded suburbs of Long Island are shooting up heroin; it’s a small world indeed. Distance is no longer predictive of security, if indeed it ever was. Just as the rest of the country picks up our styles with a predictable delay, so too will it follow our epidemiology.
And because America is what it is, just as an aside, this affects mainly (gay) young men of color, half of whom can expect, statistically, to be HIV+ by age 35. But what do you call something common to more than half of any group?
Typical, representative, characteristic, that’s what. Now think of what the A in AIDS stands for: ‘Acquired’, somethingyou get, not have. Usually via sex, specifically the kind of sex most Americans don’t even want to think about and might have a hard time spending billions of dollars mitigating. Every other high-risk group is seeing a decline. We‘re seeing growth. See the problem there?
So consider, if you will, a scenario where a majority, give or take a few, or even half of the gay men in America carry a virus that is on a perceptible track to eradication in every other demographic. Which it is; that’s where that happy talk about Ending Aids comes from.
We gays are the sole exception. Savor that for a moment. Yup, doing worse as a class than intravenous drug users, who are seeing a decline. Savor that one too; not because drug use is something inherently worthy of contempt, it’s not, but with an eye on perceptions in the mythical heartland.
Forget about the health concerns as well for a moment; consider what all this could mean for something less immediately obvious but far more concrete: the political power we presently enjoy and that forms the foundation of our increased acceptance as a class.
If, haha sorry, when this day dawns, the only speculation the political savant in me would have is to the extent of the societal and political backlash; that there would be one, I don't doubt. It is utterly inconceivable that the hard right would not seize on numbers like these to their political advantage; nor, and take it from someone who lives in that world, would our allies on the left be all that much more accepting of our little booboo.
Not when we're talking about a disease that ravaged us over three decades ago, while the country at large still sees AIDS as the deadly catastrophe it once was, and expects us to know better than to stage a repeat performance. Which, make no mistake, is exactly what we are doing. And don’t make the mistake either of a facile equation of the debut of ARVs (in 1996) leading to barebacking and then to rising numbers of infections; that curve started bending upward before the miracle pills hit (in 1992 to be exact) (6). I’d rather ask the question of why men bareback in the first place, because therein lie the answers. That there is a correlation between unprotected sex and HIV infection is perfectly well-established, what isn’t is the best way to affect the behavior in question or more to the point, the outcome.
Past is not always precedent, to be sure, but we’ve seen the intersection of different and disease before; at the cost of six hundred fifty thousand lives in this country alone. We’ve also spent dollars in their dozens of billions or more on education; that number rises into hundreds of billions when research, treatment and all the other joys of living with this virus are added up. If there is a number for aggregate spending in the U.S. on HIV and AIDS over the lifetime of the epidemic, I at least haven’t been able to find it, nor does it matter; the real question is how exactly we’re going to justify it to the American taxpayer once the tea party conjures one.
Other societies more tolerant than ours might be more generous and forgiving, as we can see vividly in the global ostracism of the Putin Games in Sochi, Russia.
Or perhaps not.
Set aside for a moment the observation that the disease is, these days, eminently treatable for most. At extortionate expense, mind you; a year’s worth of the market leading drug Atripla in the United States costs as much as a pretty decent car, or an annual mortgage, but insurance companies won’t mind paying, seeing as they are altruism made immortal corporate flesh. The U.S. government and voting public meanwhile have recently discovered that we don’t actually have horns or eat babies, not all of us at least; marriage, military service, saccharine television series and all that are now finally part of our reality. They love us. The future is ours, wider still and wider. Right? Worked for the British Empire, what could possibly go wrong?
Yeah, we’re that fucked.
That’s why Planet Gay needs aggressive, more than occasionally altogether obnoxious streetfighters like ACT UP. The data are what they are, to call the policy response paralytic is an excess of charity, is it maybe time to take to the asphalt again?
To quote ACT UP’s brilliant James Krellenstein – medical student by day, skinny hero geek by night – the numbers in question are rising “explosively”. That quote comes from a presentation on the status of the epidemic you can download here and here; a blaze of rage (utterly unexpected from someone who is quite honestly the very stereotype of the mild-mannered college student) and, in retrospect, transformative of how ACT UP New York approaches this war.
I’m utterly convinced the Krellenstein Papers were the spark that reinvigorated ACT UP, combusting fury, the wisdom of those who have been fighting AIDS for decades, and the muscular idealism of Generation Occupy. As I wrote in Part One,
ACT UP is still the elite corps of AIDS activists, it never made polite requests, it makes demands, add some fresh blood and the fury could shake this island at the center of the world to its foundations.
Maybe it was not ever thus, as many veterans dropped away, in living or dying, leaving those who stayed behind to their grief, alone with the devastations of memory; what these men and women really deserve is to have their names carved in marble. And there will be a time for that.
Now is not that time. Because this...
… remains true. It doesn’t matter whether that silence emanates from the Reagan administration then or the beltway cocktail party whores of Gay, Inc. now. Silence is silence. And shamefully, silence is consent.
ACT UP isn’t always very popular, nor do we desire to be. Misappropriating Machiavelli, “It is better to be feared than loved, if you cannot be both”. We don’t have the means to end the epidemic. We can, and will, shame those who do into action.
We can, and are, going public with advocacy on HIV prevention, including that hot topic of taking a pill a day to prevent infection. Yes, we’ve had our Clash-of-the-Titans arguments about the subject too; the method works, discussion over, time to implement. Along with all the other tools in the safer sex toolkit, be they condom use, testing, post-exposure prevention, viral suppression, whatever works.
Various agencies of our government have learned to their dismay that ACT UP still exists and isn’t at all hesitant to force action; power is such a pretty toy.
To quote our house firebrand Jeton Ademaj,
“The Prevention arsenal has expanded quite a bit, and it's our mission to make that entire arsenal available to all. We provide the knowledge, we point people to the tools, we castigate and humiliate those who would block access to either.”
We’re calling the campaign, in the usual charming directness, Fuck Smarter. (7)
That’s what it’s going to take, isn’t it? Experience (and common sense) suggest that gay men, like all humanity, will have sex or (to stay in the tone of the moment) fuck and get fucked. Let’s assume for the sake of argument that no one will be able to change that fact, not neutered cowards like certain closeted U.S. Senators from South Whatstheplace or the all too many pious, vengeful Savonarolas mentally frozen in 1984.
Nor should anyone tolerate the attempt. Love is as basic a human right as we have.
Sex in an epidemic is different. Most of us don’t know any other reality. But whatever your reality is, or the color of your skin, your gender expression or preference, no matter, it is your right to love and be loved, on your terms. Winning this war means, requires, winning it for everyone.
ACT UP was the first broad-based AIDS organization to tackle the political aspect to AIDS: that marginal people (queers, injection drug users) were being allowed to die because their lives were not valued by the mainstream. In ACT UP I worked on securing useful treatments for people living with HIV & AIDS.
By 1990 three of the pillars of ACT UP’s critique of AIDS research and regulation (that I had helped articulate) had become federal policy: accelerated approval of AIDS drugs, expanded access to research drugs outside clinical trials, and the principle that people with AIDS and their advocates deserved a say in every phase of drug development
The day will dawn when all of this is over. When it is, ACT UP may finally shut its doors and go quietly into that good night. But that sun has yet to rise, and until then, ACT UP will endure, to remember the dead and fight like hell for the living.
(1) HIV incidence is the aggregate number, per year, of new infections with the virus...
(2) .while HIV prevalence describes the percentage of living infected persons within a group.
(3) Source: (MLA format): Global epidemiology of HIV infection in men who have sex with men, Beyrer, Chris et al, 2012, The Lancet, London 2012 (doi format) doi:10.1016/S0140-6736 (12)60821-6
(4)via UNAIDS [.pdf],
(5) In fairness, there is a one-page issue brief on their site – under Health and Aging. Assholes.
(6) Estimation of HIV incidence in the United States, Hall et al, JAMA, August 2008
(7) FPO, Image by Ronaldo Gutierrez, Sao Paulo, Brazil