FILLING THE GAPS

During the onset of HIV/AIDS, community leaders stepped in to serve LGBTQ Philadelphians. Here’s how the city can learn from them after COVID-19.

• By Alexi Chacon
• Published Jun 1, 2022

In the early days of AIDS, activists and community members in Philadelphia helped achieve a revolution. Frustrated with the slow pace of help, they banded together and transformed many aspects of our society — from medical research to drug approvals and social welfare.

So much of what they accomplished holds relevance for us today, as Philadelphia recovers from another devastating virus: COVID-19. As legislators continue to grapple with the pandemic’s effects, they have a lot to learn from what happened in the early days of AIDS.

Since June 2019, I have worked and volunteered as an oral historian for the Philadelphia HIV/AIDS Oral History Project at the William Way LGBT Community Center, helping sift through more than 40 hours of conversations with dozens of local activists and community members.

Here are some of the lessons Philly legislators should learn from a band of brave trailblazers who stepped up in a time of crisis. Our post-COVID future depends on it.

Consult those in need

In the 1980s and ’90s, as AIDS quickly became a crisis, Anna Forbes at the Philadelphia AIDS Activities Coordinating Office was tasked with creating a planning council to allocate federal funding and create a long-term strategy toward addressing the epidemic.

But no people living with HIV were appointed to the council.

In response, Leonard West, a gay man living with HIV in Philadelphia, organized a group of people living with HIV to confront the committee on its failure to include members of the community it was supposed to serve.

In the archive, Forbes recalled that West “was all kinds of pissed off about the fact that there was no representation of people living with HIV on the HIV planning council. … They had put together a bunch of people living with HIV and they stormed into the meeting. … That was the very beginning of We the People.”

During COVID-19, community organizations began to form to address the immediate needs of Philadelphians — needs that could have been met with city policy. Without adequate funding, many of these organizations are at risk of shutting down.

“We're concerned with longevity,” Victoria Jayne, a volunteer with South Philadelphia Community Fridge, an organization dedicated to giving all Philadelphians access to fresh and healthy food, told me. “In the beginning, the community fridge movement was very closely tied to the pandemic, and now we're really determined to stay.”

As city legislators figure out how best to understand and address the funding needs of these community organizations, they should include them in those discussions.

Legislators should connect with the leaders of mutual aid organizations that formed at the beginning of COVID — including Mutual Aid Philly, Homies Helping Homies, The West Philly Bunny Hop, and Cooking for the Culture — to find out how to help them plan to continue their work.

Provide easy access to key resources

In the early days of the AIDS epidemic, We the People was dedicated to providing social services to and advocating for people of color living with HIV/AIDS.

In 1997, it organized a protest of 100 people outside the welfare offices on the 1300 block of Bainbridge Street and the 1400 block of Catharine Street in response to the city’s refusal to release a list of doctors in the city who would be willing to treat patients with HIV/AIDS.

This was a difficult list to come by, as some doctors feared they would lose patients who knew the doctors were treating people living with HIV/AIDS.

“We had a demonstration outside of the welfare office on Bainbridge Street. … A group of us decided we were going to go in and look for the list,” David Fair, cofounder of Lavender Health, now the Mazzoni Center, and the founder of the AIDS Activities Coordinating Office for the Department of Public Health (AACO), told an oral historian.

“Forty members of We the People followed us in, and they stayed in the lobby area. But it got so tense that the state sent somebody in by helicopter from Harrisburg to meet with us and make a commitment that they would publish the list.”

Other vital social welfare programs continued to be extremely difficult to navigate for people with HIV, so Nan Feyler, a lawyer at Lambda Legal Defense and at the AIDS Law Project, helped create a central resource for people living with HIV/AIDS that could demystify the bureaucratic process.  “I actually started with Community Legal Services … a manual on everything you needed to know to get somebody medical care and welfare, or TANF benefits, but mostly Medicaid and Social Security benefits,“ she said.

Legislators must do more to try to connect people to the resources available to them, and make it easier for residents to access them. One key step is to reduce the application time of these services, something Michigan’s Department of Health and Human Services has already achieved.

Trust communities to know their needs

Even as We the People did lifesaving work in the 1990s, the city continued to overlook many other organizations on the front lines. Ennes Littrell, who volunteered with the Philadelphia AIDS Task Force from 1986-88 and later worked for Action AIDS as its first executive director, had difficulty getting funding because the city did not trust her organization to deliver services effectively.

“In my first month I had a meeting with the health commissioner. And one of the things he said to me was that Action AIDS would never run programs,” she said. “Programs needed to be run in places that run programs, hospitals, clinics.”

Confining social services to established institutions ignores the benefits of grassroots organizations: namely, their connections to the community and ability to get a lot done with small amounts of money.

Nonprofits that did manage to get funding from the city became less tied to the communities they were serving. “As the money increased, the grassroots organizations were getting stomped into the ground,” Pam Ladds, the founder of WISDOM (Women With Immune Disorders Organizing And Meeting), a group dedicated to addressing the issues unique to women living with HIV, said in the archive.

“The ‘yuppie-ing’ of grassroots organizations is so destructive. … It can’t just be about, ‘Yeah, you did a great job, thanks. Now we’re taking over and we’re going to teach you how to really do the job you’ve been doing for so long.’”

Looking ahead

Like AIDS, COVID-19 exacerbated social inequities that existed long before the virus and will continue to harm Philadelphians — unless legislators take action to fill in the policy gaps.

When city legislators listen to the demands of their constituents, both past and present, they can enact policies that will save lives.

Alexi Chacon is an oral historian at William Way LGBT Community Center, social policy researcher at Temple University, a board member of GALAEI, and managing editor of Token Theatre Friends. @alexic213 alexic213@gmail.com