Beginning in the early 1980s, many people in New York City - the epicenter of the U.S. AIDS epidemic - found their families and friendship groups progressively wiped out in a mysterious, virulent and merciless holocaust.
By 1991, 31,695 New Yorkers had died of AIDS. The toll was accelerating, with a record 6,468 New Yorkers dying that year alone. In New York's hardest hit communities, life was a numbing cycle of hospital and funeral home visits, and picking up the phone only to hear disconsolate sobbing on the line.
"We were living in a war zone, but it was like a war that was some kind of deep secret only we knew about," recalled Patrick O'Connell, 58, an artist who helped start the group Visual AIDS in 1991 and played a pivotal role in the creation of the iconic red ribbon to promote AIDS awareness.
World AIDS Day this year coincides with the 20th anniversary of the ribbon; a symbol created to express compassion and support for people living with AIDS as well as their caregivers and the hope of an AIDS-free future. The graphic symbol was also a harbinger of "cause marketing" for all the charity tchotchkes that came after, from pink ribbons to yellow rubber bracelets.
O'Connell and a coterie of other artists were already expressing their own feelings of loss and sorrow and drawing attention to the epidemic through the creation of compelling imagery. The art was sometimes political but inescapably personal: Diagnosed HIV positive six years earlier, O'Connell was suffering from opportunistic infections, a low T-cell count and shingles. He knew his own grim prognosis from watching more than 40 neighbors around his Fire Island house die and seeing his East Village community of colleagues vanish.
The artists, meeting downtown in PS122 and the old Clock Tower building, wanted a graphic image that demanded attention, such as the yellow ribbon Tony Orlando and Dawn popularized in a song about an "ole oak tree." But they also agreed the symbol should be made to go on people, not things.
It had to be powerful and it had to be simple.
Voila: The AIDS ribbon or, as O'Connell likes to call it, "the seven inches that changed the world" was born.
Of the screaming red color, designer Isaac Mizrahi allegedly decreed at the time, "it ruins everything and it's perfect."
In the beginning, if you wore the ribbon or recognized its significance, "it was like Fight Club;" an insider's wink that you had also been affected by a disease most people preferred not to acknowledge, much less discuss, O'Connell recalled. Wearing the loop of scarlet blurred the distinction between those who had HIV or AIDS and those who didn't, "because if you were willing to talk about it, it was assumed you had it."
Some activists complained that the visual symbol of awareness and solidarity was a feel-good prop that did little to stop the epidemic. But in a fear-filled society, it served as a friendly non-confrontational way to start a conversation and to educate the curious and the ignorant.
"It did enhance the public discourse. What was really rewarding were the phone calls and correspondence from church and social groups," that used the ribbon as a way to talk about people who died of AIDS in their congregations, or how the disease could be prevented, O'Connell reminisced.
The ribbon spilled into the mainstream at the 1991 Tony Awards after Visual Aids members placed 3,000 ribbons on every seat of the Minskoff Theatre and co-presenter Jeremy Irons strode on stage wearing one in his lapel.
The Council of Fashion Designers of America recognized the impact of the red ribbon the next year by giving O'Connell and Visual Aids an award. The statuette now resides on a coffee table in O'Connell's art deco, art-crammed Hudson Heights apartment.
As a co-creator of the iconic symbol, O'Connell has met Lady Diana and Nelson Mandela, but "my heroes are all those women - a lot of them were lesbians - who took care of us in the 80s - willingly and graciously," he said.
While some marketers profited from manufacturing and selling items that referenced the consciousness raising creation, "it was a strategic decision not to copyright or trademark the ribbon," said O'Connell. He also talks about its history with other activists in the AIDS documentary, "Let the Record Show," that is now in post-production.
Kenneth Cole recently re-designed the ribbon (the design resembles a double of the original) to start a new HIV/AIDS Awareness campaign for young people. Profits from Cole’s $5 creation will go to his foundation that will in turn funnel the money to the MTV Staying Alive Foundation and amFAR.
O'Connell welcomes all flattering imitations, noting that the original twist accomplished it’s objective. "It wasn't a marketing tool. It was an art project. But it became a gateway drug for all the cause-related marketing that's out there now."
The advent of life-saving anti-retroviral drugs - introduced in an aggressive treatment regimen in the mid-90s - was a huge advance in the war against AIDS: At the height of the epidemic in 1995, 8,215 New Yorkers died of HIV/AIDS. By 2009, the annual death toll had sunk to 1,377.
But improved medical treatments are no reason to relax vigilance in the fight for an AIDS-free future, either individually or collectively, argued O'Connell, who takes 40 pills a day for the disease he estimates he has had for 30 years. "Who the hell wants to spend the rest of their life on meds?" he asked.
Even with treatment, a collapse that left him bedridden for six months forced him to go on disability in 1997. He has trouble keeping on weight and is forever fighting off opportunistic infections, including, at the moment, a brain infection. "I'm not going to be one of those guys in the Crixivan ads. I won't be taking my mountain bike up into the Alps," he dryly observed.
Yet, he also realizes he is one of the lucky ones to have lasted long enough to see the advent of death-cheating drugs. He stopped counting the number of people he knew who had died of AIDS in 1994, when the number reached 1,000: "I can't live back there. I can remember it, and weep over it, but can't live back there," he said determinedly.
O'Connell is frustrated that new cases of HIV are diagnosed each year, despite all the progress made in understanding how to short circuit transmission of the virus. "Prevention is really simple: Wear condoms and don't share needles! But there's this alarming rate of infection continuing 30 years later. I just don't get it," he sighed.
The fight for those with HIV/AIDS has also morphed, O'Connell noted. "The current battle is one of human need. The conflict of the moment is the increasing client base in the face of ever restricted funds for services."
He is proud of his role in the creation of a little red loop that wove the topic of HIV and AIDS into conversations in settings as diverse as Tupperware parties and political conventions. There is no census of how many people might have been prompted to don a condom or modify risky behaviors as a result of the ribbon, but it indisputably raised awareness, increased understanding and amplified compassion.
Of his most memorable artistic creation, O'Connell said waggishly: "There was a bake sale. And we made the first and best cake."