The Family of Rethinking AIDS

[Here’s a pdf of this post]

 

RA2009, the conference held by Rethinking AIDS (RA) in Oakland, 6-8 November, was an extraordinary success in every possible way. It exceeded wildly any reasonable expectations.

That’s not just my opinion. The RA Board meeting on Sunday evening, the later get-together for speakers at the Duesberg’s, various “au revoir”s on Sunday, all assured me that my own feelings were fully shared by many others. In the last few days, e-mails and Facebook threads and the like have further underscored how many of us remain incredulous over the blessing of having participated in this unforgettable bit of human history. RA2009 was a success not just from a scientific or intellectual point of view but also in its demonstration of deeply shared commitment and in the exhilaration felt at such unstinted commonality of purpose among so large a contingent of people representing the full spectrum of humankind.

We will be digesting the experience for a long time to come, but one insight came to me already on the Monday morning after the meeting. As I woke up, my mind was buzzing “The Family of Man!” Subconsciously while asleep, I had evidently encapsulated, this extraordinary occasion by a reminder of the book of photographs titled “The Family of Man” which had brought enthusiastic encomiums 50 years ago for its stunning photographs of people of all ages from around the world, portraying the universality of human experience that underlies superficial differences.
(I’ve been unable so far to lay my hands on the copy of the book that’s somewhere on my disorganized shelves, so I refreshed my memory from a copy  in the university library. Though the book had been published more than half a century ago, there are still 4 or 5 copies of it in the open library stacks, not in the remote storage area used for material that’s rarely accessed; and a couple of those copies are currently out on loan. The book’s sales have been in the millions. It had its source in a photographic exhibition at the Museum of Modern Art arranged by Edward Steichen in 1955, of more than 500 pictures by more than 250 photographers from dozens of countries.)

At any rate, RA2009 achieved what Steichen’s exhibition of the Family of Man had aimed for. People of all ages and backgrounds mingled and shared civilly — more than that, empathetically, in passionately demonstrated mutual good will. I’ve never before seen so many tears of empathy shed so freely and appropriately. I startle easily from sound or touch, yet while I was listening intently to a talk, when a hand suddenly descended on my shoulder, it didn’t startle, it somehow conveyed companionable reassurance. I’ve never before experienced an occasion where intellect, emotion, and spirit were so much in harmony.

Registered for the conference had been in total about 150 people from every inhabited continent. In age we ranged to my knowledge from 19 to 77, and there may well have been some outside that range. Personalities ranged from shy and retiring to effusively outgoing, from deadpan to demonstrative. Appearances ranged from old-fashioned coat-and-tie conservatism to every type of contemporary exuberance including cosmetic adornments, from stunning examples of elegant Italian style to illustrations of Hollywood grunge and sloppiness. Skin colors ranged over the spectrum. There were traditional families present and there were gay people, some announcing that preference in obvious ways and others not. There were people revealing in private or in public their “HIV-positive” status, and there were physicians who attend without discrimination equally to “HIV-positive” individuals as to others — with the vital exception that they have a special understanding, an empathy, and an awareness of when to use and when not to resort to antiretroviral medication. There were people who have suffered in dreadful, tangible ways from being “HIV-positive” (and not only because of physical iatrogenic damage), and there were friends and relatives of people who have so suffered; and there were others again, like me, who came to Rethinking for intellectual, abstract reasons and came to understand and feel only later the human aspect, the personal impact of the colossal human tragedies that HIV/AIDS theory has brought. There were writers and scientists and students and people from all sorts of work experience. There were several shades of “libertarians” and of “conservatives” and of “liberals”. There could not be a more convincing demonstration that the endless diversity among human beings need be no barrier to productive commitment to a shared purpose.

I had previously met in person only two of those present, but I had exchanged e-mails, phone calls, and written material with several dozen whom I had come to regard as valued colleagues. After just a few minutes or a few words face to face, e-mail acquaintances have become firm personal friends — something that others too experienced, as remarked in e-mails, on blogs, and elsewhere in recent days. We discovered ourselves to be members of a very large and very close-knit FAMILY.

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Much about the program bears discussion, and the proceedings will be disseminated and analyzed and critiqued in a variety of venues and ways for quite some time. Here I want to make just a few observations.

The most powerful presentations, by common agreement, were those by individuals who have most directly experienced horrors stemming from HIV/AIDS madness. The Nagel family, featured in the film House of Numbers, were at the conference throughout and made themselves available for comments and questions after the film’s showing; how can words capture the miracle of meeting Lindsey, now healthy and beautiful because her courageous parents had defied and evaded the AZT mafia? Celia Farber’s images-with-music in memory of Christine Maggiore brought a standing ovation. Karri Stokely and Tony Lance shared to the full their experiences — 11 years of devastating “side” effects of antiretrovirals for Karri, for Tony the isolation experienced by a gay Rethinker who lost to AZT some hundred friends and acquaintances. Karri and Tony honored us greatly by allowing us to learn from their lives, sharing details frankly in public that most people might hesitate to discuss even with their doctors or their priests.

All the formal and informal proceedings showed people at their sincere best: honest, open, trusting, uninhibited. No bullshit. I was struck by the contrast with the mainstreamers appearing in House of Numbers, who display the robotic hypocrisy of automata who emit only what they have been trained to emit in their designated social roles — nothing original, nothing from personal experience, everything abstracted from human reality by dishonest euphemisms like Kuritzkes’s comment that  “in retrospect the dose we started with, with AZT, was a dangerous and poorly tolerated dose.” What a way to talk about something that has killed hundreds of thousands of people and done untold permanent damage to God only knows how many more — which Kuritzkes surely knows at least subconsciously, for otherwise not even so evasive an admission would have come from him. “In retrospect”?! Many ignored voices were protesting the toxicity from the beginning and throughout.

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So RA2009 was a resounding success. No forethought or planning could have ensured that, but it also could not have happened had not the opportunity been created through splendid organizational groundwork by Siggi Duesberg, insightful first-rate program arrangements by David Rasnick, and necessary fundraising as well as instigation by David Crowe. Exemplifying the unplanned is what occurred at the banquet. Crowe had arranged for a few toasts; what could not have been foreseen was the stampede to the microphone by the many people who wanted to make explicit their gratitude for the occasion, their particular role in Rethinking, their own thoughts and feelings. I’ve been at many occasions where everyone has been positively urged to join in like this, usually to little or no effect; I’ve never seen so widespread and spontaneous a desire to share publicly.

It’s only natural that in recalling this occasion we will wonder just what made it so remarkable. Cynics might even suggest that it wasn’t really unique, just that those in attendance hadn’t much experience of similar get-togethers. For me personally, no such explanation could hold water. I’ve been to innumerable professional conferences on chemistry and history of science or science studies, where there has sometimes been excitement over specific items or topics, but nothing like the communal atmosphere and impact of RA2009. I’ve been to meetings where a single purpose was passionately shared — the wish to preserve academic standards and integrity — but we were always a noticeably homogeneous crowd of largely white, male, senior professors. I’ve participated in several other organizations of contrarian bent, for example several of the International Conferences on the Unity of the Sciences which brought together people of all stripes and disciplines and beliefs from all over the world, but the actual proceedings were in small groups and little different from academic seminars; enjoyable as interdisciplinary discussions freed from the blinders of the traditional fields of knowledge but no more than that. The Society for Scientific Exploration was established precisely to enable disciplined discussion of matters ignored or shunned by the mainstream disciplines, and its meetings have some of the characteristics that RA2009 displayed — wide range of intellectual backgrounds, joint experience of struggling against mainstream dogma, the making of friends through shared endeavor — but, again, not the extraordinary symbiosis of intellect, emotion, spirit, and very specific common purpose evident at RA2009. In the proper meaning of that much-misused word, RA2009 was UNIQUE in a very meaningful way.

We come away from RA2009 with renewed determination, as well as with a number of new ideas and plans for constructive action (plans for actions DEstructive of HIV/AIDS theory and practice). I found myself wondering what might have happened if some mainstreamers had been in attendance; surely their baseless and mistaken beliefs would have become somewhat unsettled, at the very least subconsciously.

I am by nature less than an optimist, and my instinctive reaction to optimistic plans and forecasts is “Yes, well, maybe, … BUT ….”. Nevertheless, RA2009 convinces me that we cannot be stopped, and that we will not be stopped.

Yes, we can.

Yes, we will.