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Accidental Activist: Education and Empathy in a Time of Crisis

February 18th, 2020

Written by: Barrett White

 

Chip Reed grew up in Southport, Connecticut. He’s a graduate of both Duke University and Harvard Business School. He’s participated in the Gay Games and loves gardening and hosting dinner parties. Though it sounds like you’re in for the profile of an imperious diplomat or philanthropist, Reed demurs. His invaluable work is focused on saving lives, while educating generations on a time when the future wasn’t guaranteed.

 

The Stonewall Riots still loomed large in the rearview mirror when Reed moved to New York City in 1971. The gay crowd of New York’s West Village were still creating a solid gay ghetto when he settled there, coming out shortly thereafter.

 

When a long-term relationship fizzled out in the early ‘80s, Reed set out to do all those things that he missed in the ‘70s: “I was going to Studio 54 and The Paramount – getting into the fast lane of gay life,’” laughs Reed. The community was making strides in the aftermath of an effervescent uprising that told the nation that they would not be beaten into silence. Public opinion on the gay community was beginning to shift, explains Reed, until people started to get sick. “I didn’t think too much about HIV because it wasn’t talked about among most of my friends. They were all about the same. Happily married and digging in their gardens.”

 

He met Jack at Private Eyes, a New York dance club and video bar. The two were smitten with each other, and quickly formed a relationship. As the gay scene in New York began to reel from the HIV crisis, Reed and Jack, having moved to Connecticut together, were out of touch with current events back in the city.

 

“There is a photo that always comes to mind, from a dinner party that I hosted,” says Reed. “It was a New Year’s Eve party with my chosen family. There were 15 people there; 14 men and one woman. Of the fourteen men in the photo, nine of them would be dead in the next three years.”

 

The heartbreaking theme persists throughout Reed’s photo albums. His many cross-country volleyball tournaments, his parties, his hangouts – when looking back on photos of himself and his friends, nearly a third would be lost in the crisis. Before long, Jack would also receive his diagnosis.

 

“They got Jack on AZT on an experimental basis,” Reed says. AZT, one of the pioneering medicines of the time, often brought those living with HIV symptoms that some felt were worse that the disease itself. Still, it was what was available. Jack, and many others at the time, filled his prescriptions and focused on getting his affairs in order in case the treatment wasn’t successful.

 

With Jack’s diagnosis, Reed got tested himself. The news was about what he expected. At 40 years old, he was told that he may have another year – maybe two – to live. HIV progresses to AIDS when the individual’s T-cell count reaches a low 200. Reed was already at 240. Despite his own diagnosis, he chose to focus on Jack, whose illness was more aggressive.

           

Jack’s decline was rapid and by 1988, he had succumbed to the disease which had already taken so many others who Reed had cared for. With his partner no longer by his side, Reed began taking care of himself for the first time. It was then that he met Dr. Gary Blick. With the new frontier of HIV/AIDS research, Reed was his second patient.

 

“I believe that at this point, I may be his longest surviving patient,” Reed says.

 

With the prognosis, Reed began to detach, recluse, and prepare to join Jack on the other side of life. The gay ghettos, the discos, the nightlife, and the “sex, drugs, and rock-n-roll” he had come to know all those years before when he had first moved to New York were behind him. With public opinion shifted against the queer community in light of this new “gay cancer,” the community had been shuttered. Reed, now sick himself, fell into a period of shame.

 

He sold his business, gained 50 pounds on coffee cakes, and waited. He experienced a hopeful dichotomy though, that while he expected to die, he nonetheless began taking experimental HIV drugs back in New York. A year passed.

 

“The two years that I had been given to live had come and gone, and I began to wonder if I was actually dying,” Reed recalls.

 

He began looking for a reason to live, rather than waiting to die. In New Haven, Connecticut, he met Bernie Siegel, preeminent writer and physician known for his views on the healing process – at the time, just honing these ideas. Siegel was researching why some patients survived long term and others did not. Reed, studying this theory, realized that the characteristics of these long term survivors were some that he possessed already, and some that he could stand to adopt.

 

One of these traits was the heart of an activist.

 

“We were a bunch of hippies and homos who had never raised money or been connected to the world of fundraising or medicine. But we needed to raise money and needed to help,” Reed recalls. Bread and Roses was born. From 1990 to 2002, the organization worked as a hospice for those dying of AIDS, but through Reed’s leadership, the focus post-1996 relied heavily on the new HIV/AIDS cocktail. “This gave us the opportunity to switch from ‘treating while dying’ to ‘helping you live with it.’”

 

In 1993, Reed was attending a Bread and Roses Christmas fundraiser when he spotted a handsome gentleman talking to one of Reed’s own friends. The friend connected the two, who then planned a date at the movies for a few days later.

 

“He’s been in my life ever since,” Reed says.

Reed describes being love-struck by the handsome gentleman, Chris. “When he met me, this was before the drug cocktail. This was at a time when the doctors were still expecting me to keel over at any minute. He knew that he might have to confront my situation eventually, but he still made room in his heart to date somebody with HIV at that time in history.”

 

 

At the time, many of Bread and Roses’ contemporaries had issues raising money for research and resources from the New York communities that they served, but Reed – who grew up along the affluent Connecticut coastline – was in the unique position to shake the money loose from those outside the city and bridge the gap. At the beginning of the venture, the crew was barely able to raise $2,300 at the first fundraiser. By the end, Reed and his acolytes were regularly hitting $1M in fundraising for Bread and Roses. It is estimated that roughly 200 people lived and died peacefully and with dignity in their care.

 

Bread and Roses eventually merged with a larger agency, but that didn’t stop Reed’s HIV activism. If anything, it freed him up to do more for the community. He began public speaking, discussing the importance of safe sex – a side project that he still keeps up with to this day.

 

Looking back at the marathon life that he’s run, Reed says that he never had an epiphany that HIV wouldn’t kill him.

 

“I just kept my head down, worked, and just never died,” he says. Along with his HIV status, he’s also lived through a cancer diagnosis, coronary artery disease, and a genetic disease that he says was brought on by his HIV. To him, living through the crisis helped him cope with these other diagnoses. “Cancer? Well, okay. How are we going to deal with this one?” he quips.

 

While one could certainly say that his diagnosis at 40 made him stronger in the end, his personal relationship with his status is more nuanced than that. “I feel like I wrestled that son of a bitch to a draw. And I’m not taking my foot off his neck.”

 

Now 71, he says that he spends his days looking toward his goals, not at his status. He’s lived a life that at one point, he didn’t think would be possible – when Connecticut passed marriage equality a decade ago, Reed and Chris married in the same house that they met in 16 years prior at that Christmas gala. He says that at this stage of life, the opportunity to just enjoy retirement and “putter around the garden” seem like a luxury. For a community whose elders are few and far between after the crisis, those like Reed who did survive just want to enjoy what their straight counterparts take for granted.

Though retired, he does still answer the call of activism when asked. By invitation only, Reed appears for workshops and student groups for those discussions on HIV, sex, and his experience. The preference, he says, is to have that one-on-one interaction with his subjects – touching their lives so they’ll remember where we came from.

 

 

In recalling his history, he offers his theory on the “pendulum of gay acceptance.” He again describes the fermentation of multiple civil rights movements, including the movement for gay rights, which had just culminated with the Stonewall riots of 1969, when he first moved to New York City in the early ‘70s.

 

“I date the peak of [gay] popularity to be the 1970s. Disco music, Saturday Night Fever, the parties at Studio 54… then, all the cool straight people had gay friends,” Reed says. “Then AIDS happened and we were dropped like a social pariah.”

 

The way the gay community rose up to take care of our own: Fighting the system, fighting the government, Act Up,” he continues, “The straight community wasn’t really helping, but I thought maybe they would get up and take notice of our humanity. In a crisis, we are taking care of our own and forcing progress.”

 

 

 

He attributes the pendulum’s forward swing toward acceptance and equality to the fight of crisis-era activism.

 

The upcoming generation of activists was largely born during the crisis, and came of age in a post-AZT world with such preventative medications as Truvada for PrEP. While we have come a long way, warns Reed, “Don’t forget the history.”

 

“Gay men had a brief moment in the 1970s where we generated some positive news about gays to the larger community; mainstream began embracing gays,” he says. “AIDS showed up and they dropped us. It became political football, too. I started saying in the 1980s, this would turn out to be our finest hour.”

 

He was right. “Standing up and taking care of our own – forcing change. We paid no attention to how popular or unpopular the opinion may be. Not when we can’t rely on popular opinion to support us. You need to realize that we relied on ourselves. No one else. We didn’t put up with someone trying to put us down. You must keep your antennas up. Look for situations in which you can operate and not rely on straight allies. We have the power to change anything. We’ve done it before.”