How a 1980s AIDS Support Group Changed The Internet Forever
As the AIDS epidemic spread, Ben Gardiner took to the nascent internet — and shaped the way we share health information online
Ben Gardiner was a larger-than-life mainstay of San Francisco’s Castro neighborhood in the 1980s. He had wavy white hair, big eyebrows, and a bushy beard that took Santa Claus to task. He rarely left the house without his signature pair of coveralls. His voice boomed; when he entered a room, “he was a presence,” his friend Paul Boneberg told OneZero.
Gardiner joined just about every gay organization in the city, organizing mailing lists, hosting meetings, and leading marches. He seemed to work full-time as an activist, piecing together an income through freelance side projects. In a gay liberation movement populated largely by people in their twenties and thirties, Gardiner — who turned 60 in 1981 — took on the role of elder statesman.
He was also a techie. Gardiner had been fascinated by computers since at least the 1970s, according to Boneberg. He owned a rickety Osborn 1, one of the first commercially available computers, plus a slew of other early tech. When gay activists piled into Gardiner’s apartment for meetings, they’d find half of the room cluttered with computer equipment.
Meanwhile, in the 1980s, a plague had begun creeping across the city. At first, people in the community knew it only as a mysterious pneumonia; then they called it GRID, short for “gay-related immunodeficiency”; then, finally, AIDS.
AIDS was a virtual death sentence. Across the Castro, you would see signs of sickness: Posters for vigils plastered across telephone poles. Old friends who had lost so much weight that their bodies looked hollowed out. People checking their arms and legs and cheeks for purple skin lesions, an early symptom of the cancer that swept through the AIDS-infected population.
Gardiner was one of the first activists to take the disease seriously. In February 1982, just six months after the New York Times first reported on the “rare cancer seen in 41 homosexuals,” he invited Bobbi Campbell — one of the earliest known persons to become infected with AIDS — to speak to one of his gay activist clubs.
It may have been the first political meeting about AIDS in the country, Boneberg told OneZero. Two years later, Gardiner and Boneberg launched Mobilization Against AIDS, a group that promoted testing new AIDS drugs and that worked to protect civil rights for people with AIDS, undertaking actions like battling landlords who were evicting tenants for testing positive.
Hundreds of infections morphed into tens of thousands. All the while, the federal government did nothing. In 1985, Gardiner couldn’t stand it anymore. By the start of that year, a total of 7,239 people had died of AIDS, and President Reagan still hadn’t mentioned the disease in public. While local publications like the San Francisco Sentinel did good work covering the epidemic, most of the national press reporting foregrounded lurid descriptions of gay sex over public health and safety information.
“After a while, it’s like wartime. You hear someone’s dead. Yeah, okay, now what’s for lunch? You go right on, without pausing for grief,” Gardiner would say in a later interview. In May 1985, one of his housemates died of the disease. He felt he had to do something. “I could at least provide information,” he said.
Gardiner wanted to create a database for people who were infected or at risk for infection — a place where they could trade updates about symptoms, risk factors, and experimental drug treatments.
To do it, he turned to an obscure type of virtual messaging network, called bulletin board systems (or BBSs). To start a BBS, you had to have a computer and a working modem — a rarity in the mid-’80s. But after years of playing around with computer tech, Gardiner was more equipped than almost anyone else in the gay community to do it. He had used a BBS once before. Around 1981, he’d persuaded a friend to give him access to a pornographic bulletin board; sharing porn was one of the most popular uses of the system in the community. He quickly got bored of it, but the concept stuck with him.
So in 1985, he called Mark Pearson, a tech-minded friend who was HIV positive, with a pitch: What if they pivoted BBSs away from porn, and toward spreading awareness and health information about AIDS? All he needed was Pearson’s help to write the software.
After a few stops and starts, Gardiner’s BBS — called the “AIDS Info BBS” — began to run continuously on July 25, 1985. When it went live, it became not only the first AIDS BBS in the country but the first major use of bulletin boards for public health in any capacity.
That was a big deal in more ways than one. Bulletin boards were the precursor to the modern internet — and although few remember it now, many of their first adopters were AIDS activists like Gardiner. In total, over 100 AIDS-focused bulletin boards popped up in the 1980s and 1990s. Other bulletin boards were queer-focused, discussing AIDS obliquely. The 1992 edition of the Gay & Lesbian BBS List, a catalog of queer-focused BBSs, identified 320 across North America.
Gardiner, who passed away in 2010, is a now-forgotten leader who shaped the modern queer movement — and an entire way of using the internet. Through a series of interviews with friends and fellow activists, as well as research in archival newspapers and in the logs of his BBS held by the Queer Digital History Project, for the first time, a full picture of Gardiner’s impact and legacy has come into view.
In a moment of unprecedented uncertainty, suffering, and loss, Gardiner would turn to the emerging internet to put forward a utopian vision for how network technology could raise awareness and save lives. He imagined a community organizing tool for marginalized people, a space where activists could crowdsource the crucial safety tips that their government was failing to provide.
But first, he’d have to figure out how to build it.
The idea that the internet could serve as a space to combat stigma and misinformation about public health might sound far-fetched. Today, we mostly hear about the internet doing the opposite. Conspiracy theories about Covid-19, for example, have found ample fuel thanks to social media platforms that prioritize user engagement over accuracy.
But little about the infrastructure of BBS systems resembled our internet. First, BBS users were few in number. Kevin Driscoll, a media studies professor at the University of Virginia who has researched BBSs extensively, estimated that only 2.5 million Americans used bulletin boards between the 1980s and 1990s. About 100,000 bulletin boards popped up during that period.
Access to BBSs also presumed a degree of privilege. Though personal computers were widely available by the mid-1980s, they were expensive, and most had no networking capabilities. Americans bought computers to play video games or connect to printers, not to trade messages with strangers in virtual space. To visit a BBS, you also needed a modem, which cost hundreds of dollars at the time.
“Nobody just [happened] to have a modem,” Driscoll said in an interview with OneZero. “You just wouldn’t get one by accident. These are people who are opting in to communication as their way of expressing their hobby.”
The first BBS was launched in 1978. It earned the name “bulletin board system” because one of its co-creators, Ward Christensen, designed its navigation to look like a corkboard. Colloquially, BBSs were called “boards.” When you wanted to log on, you had to call a phone number. From there, you entered the “lobby” — equivalent to a homepage. Then you could move into different sections of the board. Most had a dedicated space for exchanging text-file-based messages, which was called the “mail room.” In other parts of the board, users could upload their own files.
BBSs embodied the decentralized, grassroots infrastructure of the early internet, and little about these systems had been corporatized. Most were operated by one-off enthusiasts — people like Gardiner, working off a shoestring budget, doing it because they believed in the work.
Born in Boston in 1921 to a well-off family, Ben Gardiner graduated from Harvard in the 1940s and enrolled in the Army. When he returned from the war, he married a woman, and they had four children. Gardiner worked as a music writer; on the side, he ventured into acting. He was an extra in the iconic 1959 film North by Northwest.
At the time, he was reserved about his gay identity. “Most people I knew then didn’t want anything to do with activism,” he said in a 1989 interview with the gay publication GALA Review. “Avoiding activism was the prudent thing to do.”
In the 1960s, he threw himself into social work, at one point opening up a house for marginalized people in need of shelter, including ex-prisoners, in Arizona. Gardiner, who had struggled with addiction throughout his life, became particularly invested in helping other addicts. He began to offer informal counseling, something he would quietly continue to do through Alcoholics Anonymous and other groups for the rest of his life.
It wasn’t until the 1970s, when Gardiner moved to San Francisco, that he became an active political organizer. He worked for Harvey Milk’s mayoral campaign. Later, after Milk’s assassination, he traveled across the country to register queer people to vote.
In 1981, he took the position of president of the Stonewall Democratic Club, where he fought against the SFPD’s brutalizing of the queer community. After a series of police officers beat up queer and trans Castro residents, and the police force spent two years dragging their feet on investigations, Gardiner said, “There is no excuse for the continuing delay on the part of city and council officials. How long does it take to recognize the photograph of a cop?”
By the time AIDS hit, the lack of nuanced national media coverage — paired with a response that amounted to a shrug from federal and state governments — infuriated Gardiner. In 1986, he co-wrote a letter that declared, “Partly as a result of the inadequacy of the media, people who have lifesaving information cannot get it into the hands of those who need it most.”
The bulletin board was a shot in the dark — the product of a desperate time. The project was entirely bootstrapped. In its first iteration, the AIDS Info BBS had so little storage capacity that Gardiner had to delete certain files every night so that there would be room for more uploads the next morning. He didn’t have the money to buy more storage.
“I had no budget, no funding, and no assistance from anybody around here except [my friend] Mark [Pearson],” Gardiner would tell the documentarian Jason Scott in a 2002 film about the AIDS crisis. “And Mark had expertise but not much money, and he was dying.”
By 1987, about 500 people visited the BBS every day, posting an average of 100 messages. Gardiner asked his regular visitors to sign up for a membership so that he could afford to keep it running. Users would give their name and address, though in special cases he’d let them remain anonymous. Once in a while, Gardiner sent out mailings asking for support. Some did write him checks — never huge amounts, but in total, it was enough to pay the bills, plus a piece of his rent.
Gardiner’s AIDS Info BBS had several different sections, including “Reading Matter,” which featured uploaded newspaper articles and scientific papers. Among the publications in “Reading Matter” was an archive of the last six years of the Wall Street Journal, the newsletter of the Pharmaceutical Manufacturers Association, and blank copies of wills and powers of attorney designations for sick visitors who feared they were dying.
By far the most popular section on Gardiner’s BBS, though, was its “Open Forum.” Gardiner added certain features into the forum’s code, like an acronym translator that would make the messages more accessible to people who had little familiarity with the disease.
Visitors posted about the ethics of double-blind studies, the value of getting an HIV antibody test, the effectiveness of condoms, and their experiences with different experimental drugs. One typical post on November 18, 1987, asked, “What is the lastest wisdom on the likelihood of transmission through oral sex? Any studies on the concentration of HIV in pre-ejaculatory emmissions [sic]?”
One user offered up a rural property they owned in California to sick people who had nowhere to go. Another listed out the Bay Area pharmacies with the cheapest prices for potential AIDS drugs. A third vented about a medical establishment that they felt was letting people with AIDS die: “double blind studies are ok when the patients are going to be around after having been given the placebo. With AIDS one half of your test group doesn’t survive. Why not just give everything to everybody in extreme cases.”
Regular posters included nurses, doctors, an attorney for the Human Rights Commission, a librarian named Terry Oehler, the activist Arthur Evans, and organizer and newsletter writer Keith Griffith.
When one user came in recommending a series of unproven treatments in April 1988, a board regular replied, “We will be glad to hear your evidence. However, most of us keep careful track of new AIDS information, and it is hard to believe there is anything significant that people on this board, not to mention Dr. Voelberding, have not heard about.” (These and other AIDS Info BBS posts are available on the Queer Digital History Project.)
But one of the most telling interactions came at the tail end of 1987. Gardiner started a thread which he titled, “The ‘You have WHAT?’ Confusion.” Gardiner, it seemed, was at the end of his rope. “I feel like smashing fruit jars against the wall,” he wrote. “What the hell is wrong? I read about doctors who are saying all the right things and getting ignored.”
The epidemic was spreading rapidly, sapping his mental energy and the lives of his loved ones. The trajectory of the AIDS crisis looked bleaker than ever. “A few of my friends are gone (dead) already. I face the fact that survival may mean building a whole new social network (not just the lover, I mean a set of friends) and that is a staggering prospect even apart from the threat of death,” he wrote. “Nobody talks about building a good life. That is apparently out. Anyway it is hard to think about building a good life when half your friends are dying of this rotten, cruel condition we call AIDS.”
The post was uncharacteristic for Gardiner, who usually preferred to stay in the background and only broke his silence when a discussion grew heated or someone shared dubious information. But the thread revealed the acute seriousness with which he took his work — and the intense, daily panic that came with being a queer person in San Francisco at the time.
It struck a chord with the community. A user named “charlie” replied, “BOY, do I hear what you’re saying! There are suddenly so many options for PWA’s [People with AIDS] and people who are HIV-positive, yet so little dependable information about which treatments work and which ones don’t, which ones are still unproven, and which ones are damaging or have damaging side-effects,” he wrote.
His lover, charlie wrote, had just received an AIDS diagnosis, and no amount of panicked reading seemed to offer an answer about what to do. “People we both love are very sick — some have already died — I feel totally helpless. Thanks for letting me vent my feelings!” he wrote.
There were not many other spaces where people like him — people who had sick friends and lovers, people who spent all of their time trying to make sense of this disease — could share their pain.
A public-health-focused BBS was a risky project. An admin-reliant system like this — where a single host, nicknamed a Sysop, controls the content — could certainly backfire if the admin lacked good intentions and didn’t care much about the accuracy of their information.
And yet, the rhythms of a board were much more manageable than of the social media platforms we know today. First, even if you were an active follower of a particular BBS, you wouldn’t check it consistently throughout the day. Since most BBSs had just one or two phone lines, only a single outside user could access the board at a time. At most, you’d call into a board once every few days.
Some BBS hosts opened a separate, bulletin-board-specific phone line in order to accommodate visitors. But others just listed their personal home phone number, which is why many BBSs were technically only available part-time. Some listed “hours of operation,” saying that they would only take visitors before 5 p.m. or on weekdays when they were off at work.
Relying on phone lines also had another limitation. At the time, phone companies charged per call, and dialing a number a few towns over was much cheaper than dialing one across the country. As a consequence, many BBSs were regional. To avoid hefty charges, you would just call into the BBS most local to you.
Perhaps the crucial difference between BBSs and today’s social media, though, is that BBSs didn’t rely on an underlying corporate infrastructure. The individual BBS host sets not only the rules of the platform but also its underlying code.
To understand what this means in practice, compare running a BBS to serving as an admin of a Facebook Group. Yes, you can set rough guidelines for the content you’ll allow users to post, but you’re still running your system on an external platform. You can’t change the fundamental rules of Facebook or its algorithm, and you can’t alter the group’s layout — or open it to non-Facebook users. BBSs had no such limitations. If the host of a BBS decided they didn’t like a particular feature? They could just go into the code and change it.
Because BBSs did not run on a centralized platform, the hosts also created their own rules about content. And it was these BBS hosts, not Facebook algorithms, patrolling content for inaccuracies. “In bulletin board system culture, moderation is very close to the ground,” said Driscoll. Hosts could remove posts, close accounts, and block users without a second thought.
Unlike social media giants, which have an incentive to maximize user engagement, BBS admins had an incentive to curb misinformation on their boards. If misinformation appeared on their server, they couldn’t so easily claim third-party neutrality because the BBS was explicitly theirs. “For a bulletin board system, they have everything to lose if they have misinformation on their system,” said Driscoll. “It doesn’t seem that’s as true as much for the major platforms.”
That meant moderation on BBSs was frequent and aggressive. On the AIDS Info BBS, for instance, Gardiner set his own rules. When a public health question was undecided — for instance, the efficacy of early experimental treatments, like AZT — Gardiner was careful to “put both sides of a controversy on, and that allows people to make up their minds and hear both sides of their argument,” he said in 2002. But any post that was patently false Gardiner removed without a second thought.
When BBSs worked well, they represented one of the highest promises of the internet: Crowdsourced public health information shared directly from the people who experienced the disease, with a dedicated host taking down any posts that were false or misleading.
As one regular poster to the AIDS Info BBS explained in March 1988, “While I don’t think people should take at face value things written on this board, I would think that, all in all, this bbs is probably one of the better places to get information on AIDS, since rarely does any individual’s advice go unchallenged.”
Gardiner’s commitment to helping people with AIDS went well beyond his bulletin board. He had a big apartment with several spare rooms. At the height of the epidemic, when hospitals refused to treat AIDS patients and landlords evicted them, he offered people with AIDS a place to stay, rent-free.
“He would be part of the underground railroad of places for these guys, so they would have a bed,” Scott, the documentarian who interviewed Gardener shortly before his death, remembered.
At the time, even some members of the gay community were afraid to house people with AIDS. So little was known about the disease or how it spread; many felt that they could catch it just by proximity to a sick person. Gardiner was not one of those people. “Many people were very afraid,” Boneberg said. “Ben just said, sure.”
But the AIDS Info BBS was Gardiner’s most lasting contribution to fighting the epidemic. For several years, it was the biggest AIDS BBS in the country. The board peaked around 1989, which Gardener called his “15 minutes of fame.” Back then, he was hosting users from seven countries.
News of Gardiner’s BBS spread widely in the gay community. Gay newspapers began to include notices about the BBS, and many AIDS resource lists mentioned Gardiner’s site. In no small part thanks to his work, queer people began to flock to bulletin boards in large numbers. Looking across the bulletin boards of the ’80s and ’90s, “queer communities and queer cultures are way overrepresented,” said Driscoll. “If you’re looking at magazines about BBSs, there’s lots of talk about gay sex and gay men and opportunities to meeting people online.”
Gardiner’s success soon spawned dozens of spin-offs. Many of these boards existed for only a couple of years before their hosts inevitably succumbed to the disease. In a recent paper, historians Kathryn Brewster and Bonnie Ruberg recounted the story of the SURVIVORS BBS, a board ran by a PhD student named Aaron Charnow. SURVIVORS lasted from 1987 until Charnow’s own death from AIDS in 1990.
SURVIVORS was geared toward anyone who had AIDS or whose loved ones had died of it. Visitors to SURVIVORS shared their stories of grief and their tips to survival. One anonymous poster talked about losing a boyfriend to the disease. He wrote, “I was saddened to my depths with the realisation that I’m not even 30 years old and I had become immune to serenity, and how much I had possibly lost because of it.” In another post relayed by Brewster and Ruberg, Charnow himself implored HIV-positive people to keep hope: “Be kind to yourself. You are facing something just as terrifying as death: you are facing life.”
The next big AIDS awareness-focused BBS launched in 1990 when an openly trans Catholic nun named Mary Elizabeth Clark launched the AIDS Education General Information System (AEGIS) out of a trailer park in California. After receiving an outpouring of funding from private companies, Clark expanded AEGIS to include 24 phone lines, which meant that 24 people could visit the board — and chat with each other — at the same time. That may not sound like much today, but it was a serious feat at the time.
Public health researchers even turned to AIDS-related bulletin boards for help. In 1989, the Gay Community News, Boston’s gay newspaper, recounted how the National Cancer Institute had struggled to recruit patients for its trial of Didanosine, an experimental AIDS drug.
Then an unnamed Washington, D.C., BBS operator posted about the trial on his board, and the number of volunteers spiked. As the Gay Community News explained, “Apparently the whole clock on a drug as important as DDI went back to one private individual happening to put a message on his computer bulletin board to enable the study to recruit subjects.”
Cait McKinney, a professor of communications at Simon Fraser University, said that BBSs became an early site of collaboration between public health experts and HIV+ communities.
Of course, many AIDS patients, including those within the most marginalized segments of the queer community, couldn’t afford to access these boards. Their voices were not well represented on a board like Gardiner’s.
Some bulletin boards, though, attempted to reach these individuals directly. Critical Path, a BBS launched in 1992 by ACT UP activist Kiyoshi Kuromiya, “literally became an internet service provider,” McKinney told OneZero. “They set up a server and they became a community-oriented internet service provider and they provided free or extremely low-cost email, web hosting, and dial-up access.” Critical Path gave access to over 500 at-risk queer people in the Philadelphia area — turning themselves into a kind of gay, grassroots Verizon.
When providing internet access wasn’t feasible, Kuromiya printed out physical copies of the BBS and mailed them to vulnerable populations, including incarcerated people and sex workers.
In 1997, as dial-up internet access began to spread across the country, Gardiner converted his BBS into a full-fledged website under the same name. Just as his AIDS Info BBS was at the vanguard of a larger flurry of AIDS BBSs, Gardiner soon inspired a new wave of AIDS-related websites.
There was, for example, Dawn Averitt’s website “Trekking with AIDS” — a chronicle of hiking the Appalachian while infected. Gardiner directly promoted queer websites like these, including discussion board QueerNet. Gardiner, it turned out, didn’t just reinvent BBSs; he formed the scaffolding for the wider queer internet.
This new surge of queer websites soon outflanked Gardiner’s own, and as AIDS receded from the headlines, Gardiner’s projects slowly turned to relics. Gay people started flocking to the likes of Gay.com to connect with each other. By the early 2000s, Gardiner acknowledged that his site had become “less renowned” in the community. His radical notion that the internet could connect queer people and disseminate info about public health became so widely accepted that it now seemed like simple common sense.
Still, Gardiner plunged himself into his work. By the time the new century rolled around, Gardiner was in his eighties, and he had an untold number of projects going. He ran his own mail-order bookstore, Sibylline of Books, and produced his own films.
But Gardiner never lost his connection to the HIV-positivity community. Up until 2009, he continued to attend AIDS conferences. He was in his eighties and looking frailer — friends recall that around then he’d lost his towering height — but that didn’t slow him down. His work, he felt, was not fully done. He wouldn’t let himself quit.
The writer John Lauritsen, a friend who had kept up with Gardiner since the 1980s, remarked that it was Gardiner, now 87 years old, who had introduced him to Skype in 2009. Skype was still a novelty to Lauritsen, but to Gardiner, it was old news. The two began video chatting regularly, Gardiner insisting on staying connected courtesy of the latest technology right until the end. He died of heart failure in January 2010.
Gardiner would probably have been horrified to discover that a handful of tech giants have overtaken the scrappy, community-oriented internet that he had made his own and that the web is now dominated by monolithic platforms that are as likely to help spread misinformation as they are useful intel.
But his legacy lives on in anyone who now takes to the internet in good faith to deliver information and support to the suffering, in the millions of people who have pushed onward, putting the frontiers of the web to good use, finding pockets in Facebook and Twitter to spread crucial information to those who need it. In efforts like the Covid “long-hauler” Slack chats and Facebook groups today: Initially ignored by doctors, these long-haulers, or Covid sufferers who exhibit symptoms for 30 days or more, have organized online to share symptoms, support, and scientific research. As with the AIDS BBSs, researchers are now turning to these groups to better understand the nuances of the virus.
Few web activists or organizers or long-haulers know his name today, but their communities show that the spirit of what Ben Gardiner built is still with us, online to the last.