doug@spdcc.com (Doug Mackensie) (07/28/90)
This article was written by Ed Cedar on the Backroom BBS in NYC. It is about a feloow who moderated a section on the BBS entitled Survivors. Rather than dealing with the clinical aspects of the scourge, David (Upper Westsider) and his correspondents dealed with the human side of the epidemic. David Charnow died this past Monday and a memorial service was held Thursday night at Columbia Teachers College. [Ed Cedar writes:] This ... message contains an article I was assigned to write about Survivors for the GMHC newsletter. It never got published -- they got cold feet about some aspects of it -- By the way, David ADORED the article and loved that it upset them at GMHC: Here it is: If Upper Westsider didn't have what he calls an "anti-empirical bias," there's no telling what his Survivors board might now be like, or if it would even have come into existence. When he was first asked by Artie, the operator of the New York-based computer bulletin board called the Backroom, to start a new section of the Backroom dealing with AIDS, Upper Westsider already knew that he had tested positive for HIV antibodies. By the time he had transcribed his first set of articles and PWA interviews and been "on the air" for but a few weeks, he'd had a bout of LIP and his diagnosis of AIDS was confirmed. If he had relied too heavily on what that meant about his future "statistically," the project might never have gotten off the ground. But first, a word of explanation. If you've never communicated over a computer bulletin board, picture it this way: You worked overtime on Friday and never got to cash your paycheck, so you dash to the automatic teller machine in your neighborhood bank to grab some bucks for the weekend. Before you sign off, though, you decide to take a chance. You reach for the full keyboard that was recently installed and type out a message: "My favorite aunt is in from Detroit and I'm taking her to see la Cage aux Folles. You see, I'm thinking of telling her I'm gay, and I want to see how she reacts. Does anyone have any suggestions?" You reread the screen to make sure you really want to do this, then hit the "Save" button that stores it in the big computer downtown, and you're gone. (By the way, it turns out your aunt had you figured out a long time ago!) Next payday you're back at the ATM. When you punch out your secret I.D. code, a notice flashes across the screen: "The following messages are waiting for you..." Some, marked private, only you will be allowed to read, but others are open to view by every bank customer. "Good thinking," reacts Sally from Staten Island. "I left Gay Community News on the coffee table when my parents came over for dinner. It worked!" Bob from the Bronx isn't so certain: "I don't see why it's anybody's business what I do in bed." And someone who only signs himself The Avenger reasons, "All you perverts ought to be shot." (You also notice he left Sally a message saying women should keep their mouths shut and their legs crossed.) Now, none of this really happens quite so publicly. Communicating on a bulletin board system -- BBSing for short -- takes place in the privacy of the homes and offices of people like you, whose personal computers are tied by ordinary phone lines to a host computer. The host computer stores everyone's messages and feeds them to the appropriate users when they call. The network of people you are addressing, though often quite large, isn't as random as the full set of Citibank customers, and the fact that you can use a "handle" instead of your name gives you as much control over your anonymity as you want. With computers becoming so common these days, there are probably as many bulletin boards as there are special-interest groups to make use of them. The White Supremacists have them, as do psychologists who want to discuss therapeutic theory. There's even one for the acolytes of enema sex. So of course there are gay boards, lots of them, all over the country. Because Upper Westsider lives in the academic world (after years as a teacher and school principal he is now working on his doctorate in education at a university here in New York), he knows his way around the computer services from which researchers draw their data these days, including several that are dedicated to AIDS. Between the time he learned of his positive antibody status and the day of his diagnosis, he had done a pretty thorough search not only of the databases but of publishing in general. He found lots of data, but what were lacking above all were good stories on survivors; he found very few sources of emotional support. "People tend to think that a computer is best for long lists," he says; for "hard data" like resource lists, journal articles, and statistics. "The better board, people imagine, is the one that organizes resources well, and the larger it is, the better." Though he wasn't sure what shape Survivors would take when he started it, it was clear he would move it in a different direction, toward small coversations with "no compiling of anything, a flow that covers all kinds of topics." That is Upper Westsider's anti-empirical bias at work. Once you think you know what categories there are for AIDS, he says, you've lost the ballgame. You'll develop those categories, but you won't look at other ones that may be more productive. "AIDS has changed my life in a way that means it can never go back to what it was. If I stay with that, and speak from that perspective, I lose all organization but the gain is that other people hear it and understand it, and they can respond in terms of their own uncertainty, doubt, fear." In structure, Survivors isn't all that different from "Dear Abby." Readers, who are not necessarily PWAs themselves, send a private message only the Westsider can see, describing an AIDS concern of their own or responding to what they've read on the board. After editing out any hint to the writer's identity, the message is posted for everyone to read, along with the Westsider's personal response. It's the word "personal" that spells the difference between "Dear Abby" and Survivors. The Westsider has no expert advice to offer; he has only the reactions of an insider. "The outsider may want to talk about the government's obligation to do testing and deliver drugs. For me that issue has a different force. Every time I go to the drugstore now, I leave a check for $1,200, and it all goes to Burroughs Wellcome." By responding to the personal with the personal, the Westsider has encouraged readers along a path of self-disclosure that reflects his own motivation for starting the board: his conviction that such open sharing is a counterphobic measure, an antidote to the reaction some PWAs have that "I'm the only one, it's all my fault, and I don't dare speak about it or I'll get sicker." His hope for himself was that "the closer I got to people who were really sick, the less anxious I would be about getting sick myself." Often the Westsider's answers are couched in humor and what might be called indirection, as when he answered a writer who first had to apologize "for +he `+' represen+ing a cer+ain le++er; +ha+ key on my compu+er is broken. "We all deal with AIDS in our own way," the writer went on. He was supporting a "wonderful man" who was the care partner of a dying lover, and while he was deeply in love with this man, he realized that they would not become lovers afterwards. He spoke about patience, and the need to provide reassurance, but the theme seemed to be desertion. Though the Westsider went on to support his answer with an anecdote about counsel once given to him by a religious hermit, his response was really contained in this opening: "You know how I try to avoid giving advice, but I think this is important. "Try to get your keyboard fixed. First try that non-residue freon spray.... And next try a major repair job. But keep it. "Everyone knows that a comfortable old piece of clothing is good for body and soul. Never throw out an old shirt. No. Get it repaired. The same advice about clothing goes for your keyboard. And for your relationship(s)." The Westsider's insistence that he "model" self-disclosure for his readers by using it in his answers has tested his resolve, but never more severely than when he received the following message from a newly diagnosed PWA: "Two weeks ago I was out on the Island of Fire, having a wonderful time. Unfortunately, I had a wonderful unsafe time with someone....In spite of the fact that I was stoned and smashed there is no excuse for what I did....I can justify what occurred by saying that anyone who jumps into bed with me is responsible to make sure he is protected. But it isn't working. The first time I've had sex...in eighteen months, and I feel I've killed them....[signed] Confused." The Westsider agonized over that one for days. His reader was entitled to an answer; he had asked for one. And he deserved to be treated fairly. But to answer fairly seemed to require that the Westsider reveal more than perhaps he was ready to. Nonetheless, he did: "I don't think you're confused. I think you're guilty. "Let me tell you a story. "I got my ELISA from a dermatologist...After I got the news of testing positive, and had it repeated elsewhere, and Western Blot, etc., I went through a few days of extreme denial. I had a fling, no condom, just like your Fire Island fling. "And I got the clap. "I returned to that dermatologist because he is good....He gave me a shot and announced, `That's that.' And he wanted to see me in his office. "In his office, he looked me in the eye, and said, `You are a murderer.' "Silence. Thick silence. "He lowered his eyes and said, `Sorry. I didn't mean to say that.' But he had said it. "Now I notice that you try to justify your fling on the basis of responsibility. I tried to justify mine on medical grounds and in other ways. Now I notice that your attempts to justify the action and to pacify your guilt don't work. Mine don't work either. [signed] Upper Westsider." What Upper Westsider believes is that, for PWAs, the question of guilt over those they may have infected unknowingly is a powerful one, and that they cannot begin to define their ethical position about it unless they are able to acknowledge any actual guilt where it exists. Acknowledging that guilt, he feels, releases creative energy that helps in the process of transforming one's life, something that can happen only after an initial paralyzed period, a period so ruled by pain that often the only possible response is denial. That was the explanation of his own behavior, and it was only fair that he share it with someone else in pain. Of course, not every exchange on Survivors carries quite that much freight. In many ways the board replicates an afternoon at the Living Room, a drop-in lounge run by New York's PWA Coalition, where people can compare T-cell counts, toss around symptoms and side effects, and generally benefit from one another's experience. "With a disease that is as ambiguous as AIDS," Westsider feels, "yet is so threatening in its impact, it's important to establish models and broadcast them for others to pick up on." That's why he'd be happy to see many more AIDS-oriented bulletin boards, and many more Living Rooms and GMHCs. "It puts the power of information in the hands of those who have or are concerned with the disease, rather than leaving it as secret information in the hands of researchers." After 250 messages, Upper Westsider is no more sure than he was when he started exactly what Survivors should be. What he has learned for sure is that he should enjoy the messages as they come in, and that "I should trust my growing awareness that there aren't too many variations on having an HIV concern. This tree has only a few branches to it. I am nurturing that branch that emphasizes survival. It's shorter than any other branch out there." (end) --- TBBS v2.1/NM * Origin: The Backroom - NY's First & Finest - (718) 849-1614 (1/0) -- Doug Mackensie doug@spdcc.COM System operator, Doug's Den BBS - (617) 245-1270 - 300/1200/2400 baud GayCom in New England "More fun per byte"