Bioethics, healthcare policy, and related issues.
I just came across a comment on another blog, to the effect that today’s medical students were not even born when the AIDS epidemic was officially recognized in 1981.
This hit me with an unexpected force. It was one of those moments when you suddenly see things from a completely new perspective – a “click” moment. Usually those incidents leave me feeling chagrined at what I had overlooked or been oblivious to. In this case I was just taken aback – partly at feeling so goddamned old, partly at the thought of what our history with AIDS has meant for us.
I was aware of the “AIDS at 25″ anniversary now upon us, but hadn’t converted that to its meaning in human lifetimes. An entire generation grown up with AIDS. How very strange. How very sad. And how . . . different.
I was a teenager living in the San Francisco Bay Area when “the gay disease” – later “GRID”, then “AIDS”, then “ARC” – was first bruited in the news. I witnessed, and had strong feelings about, the debate over closing the bathhouses and gay bookstores and backroom bars. I vividly remember attending a public lecture by Marcus Conant in which he nattered vaguely about lowered gay immune response due to anal sex or poppers – theories now discredited, but as good as any others at that time. I remember a private conversation with Conant, again, in which he resoundingly retold the (somewhat overdramatized) story of Dr. John Snow removing the handle of a local pump in London to stop a cholera epidemic – his analogy was to shutting the bathhouses. I remember the fear these debates engendered, and the sense of political opportunism and scapegoating that attended them.
George Will, in his luxuriously ignorant Op-Ed, laments that:
The U.S. epidemic, which through 2004 had killed 530,000, could have been greatly contained by intense campaigns to modify sexual and drug-use behavior in 25 to 30 neighborhoods from New York and Miami to San Francisco. But early in the American epidemic, political values impeded public health requirements.
For him, generations of violent repression of gays in the same insitutions on which he wanted to focus “an intense campaign”, and barely a dozen years of grudging freedom in those same institutions, bears no relevance to the response to a poorly-understood disease that even at that time was being touted by his political compatriots as “God’s judgment on fags”. The fact that any public health campaign necessarily arises from political values – that the whole idea of forcing people to do what they don’t want to do for themselves is an inherently political act – is likewise absent from his pinched “told-you-soing”. Wanting a safe place for gays to congregate – that’s a “political value”. Closing places where gays congregate (or arresting gays who carry one particular disease, or putting gays in concentration camps, or forcibly tattoing HIV+ gays on the arms and buttocks, as Will’s beloved William F. Buckley has repeatedly recommended) – those are not “political values”. But AIDS was entirely political in the time before it was “AIDS” – it could not but be, given that it was in virtually no sense medical.
Those of us who witnessed the whipsawing of fears and dangers inside and out of the gay community in the first years of the growing epidemic were both bewildered and, usually, torn by competing impulses to warn, to publicize, to educate, and also to avoid hysteria, to protect, to guard against a further backlash. The assassination of Harvey Milk at the hands of a bigoted ex-San Francisco cop – and the police department’s intoxicated open celebration of the murder – came barely two years before the first anomalous cases of Kaposi’s sarcoma were reported in gay men. The outcome, if gays were blamed for a new plague, was ominous, and colored every thought and action about the subject. The public backlash built almost day by day – people being thrown out of their apartments, segregated on airliners, reportedly starving in hospitals because housekeeping staff would not deliver food to their rooms. The Reagan administration’s cowardly and indifferent abnegation on this issue left a feeling of being cut adrift, left to the elements. And above it all the uncertainty, the constant fear – what really caused this, how did it work, why did they not seem able to find an effective treatment?
The gnawing encroachment of this strange invader was draining. For someone just becoming sexually active at that time – even heterosexually, and not exactly with (non-)gay abandon – the idea that sex itself could kill you hardly eased the passage to a healthy sexual being. Condoms today are standard equipment, and “getting tested” is a rite of commitment in a relationship, but in the late 1980s, all that was still being negotiated. What was a reasonable risk was hard to say, and your beliefs about it largely testified to your political alliances and level of bigotry, not your level of scientific knowledge. You had to choose just what kind of life you wanted to lead, what connections you wanted to make, with, for really the first time in history, your life hanging in the balance. Worrisome enough to anyone, a real burden to the young who had anticipated exploring their own sexual landscapes, and found them suddenly, newly toxic.
Today, most of those early questions have been answered, and reasonably effective treatments – but no cure – have been found. The public backlash has been managed, and has somewhat receded. Talk of closing high-transmission locations has resurfaced, but with much less of the whiff of Nazism. Contract tracing is standard practice, and is no longer controversial. Much remains elusive, and far too much undone. Conditions in the Third World are horrendous, and the trend is difficult to gauge. But the brunt of the storm has been weathered and we are managing.
That is the world today’s young grow up in: a world in which AIDS looms from their day of birth, but has also already been corralled and characterized. A world in which the dangers they face are greater than in my childhood, but the assurance with which they can face them is greater than in my youth. A world in which their country’s level of affluence determines whether a single act of pleasure may hand them a death sentence, but a world in which they know that the consequences of that act need not be a death sentence. And a world committed to fighting disease wherever it manifests – a world in which they do not wonder, despairingly, if they are being left to die as a convenient resolution of the larger world’s contempt for them.
I remember a quote from a somewhat overeager Star Wars fan, when one of the later installments of the seemingly interminable saga was released: “Today’s children grow up without ever not knowing that Darth Vader is Luke’s father! I wonder what that must be like?” The first two Star Wars films were released in the years just preceding “the gay plague”. It never occurred to me to wonder what the world is like for kids born after those movies, but I now recognize that today’s children – indeed, today’s adults in their mid-20s – grow up never not worrying about AIDS, but also never being taken by surprise by it, never having their world turned upside down by it, never wondering how far the shakeup will extend, how much unlike their world their future world will be because of AIDS.
It is strange to me that so manifest a horror, so overwhelming a sea change in the grounding of intimacy and health, as the one that shaped my formative years is simply absent from the lives of those who now live with the same epidemic I do. I realize that, however similarly informed and educated on AIDS issues we may be, that generation can never see it as those of my generation did. Very likely those born only a few years or a decade after me see it very differently as well. AIDS must seem more normal to them, less a derailment than merely one of the parameters they take into account in plotting their lives, less a tragedy than simply a problem.
I wonder what that must be like.
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