Butch McKay
Butch McKay

The largest annual U.S. gathering of people living with HIV happens in a small city in the Florida Panhandle, in the region known as the Deep South.

Welcome to Fort Walton Beach, home of Okaloosa AIDS Support and Informational Services; its longtime executive director, Butch McKay; and the Positive Living Conference (PLC), which McKay founded, now in its 18th year. Each year, armed with no conference budget (“I have an agreement with my board that the conference can continue as long as it doesn’t cost them money”), McKay and one other member of his staff make possible what is, for many people living with HIV (PLHIV), among the most important weekends on the calendar.

Joseph Lennox-Smith of Tampa, who has been living with HIV since 1987, has only missed one PLC since the first event. “I can’t imagine not coming to this conference,” said Lennox-Smith, who was among the conference’s first presenters. “I would feel like something was missing from my life if I weren’t here.”

The conference took place Friday, September 18, through Sunday, September 20. “It’s not the largest we’ve had; funding was way down this year,” said McKay. “This is also known as the ’poor man’s conference.’ ... We’ve always tried to make it affordable.” At PLC, PLHIV are charged $100 for a weekend of dynamic workshops by world-class presenters, plus a shared room and all meals.

PLC also traditionally features separate pre-conference events, sponsored by outside organizations and focused on specific communities or advocacy goals. In 2014, Positive Women’s Network (PWN-USA) held SPEAK UP!, the first National Leadership Summit for Women Living with HIV, as a pre-conference to PLC. “That brought a lot of people to this conference that had never heard of it,” McKay explained, “and a lot of them are back here this year.”

Attendees of the 2015 Positive Living Conference


This year, 85 attendees at the daylong Network Empowerment Pre-Conference learned about the crucial need to revive the PLHIV self-empowerment movement. The pre-conference, co-hosted by the Sero Project and the Southern AIDS Coalition, brought together PLHIV and representatives from HIV service providers to explore ways to collaborate to create or strengthen networks of PLHIV — particularly those representing key communities like transgender women and young gay and bisexual men.

Sean Strub, Sero’s executive director, entreated the crowd to recognize that the most effective way to combat HIV stigma is not to focus on those doing the stigmatizing — “haters gonna hate,” he quipped — but to empower the stigmatized. Strub added that connection to a local network of PLHIV was once the norm when a person received an HIV diagnosis. Nowadays, “There are a lot of people who are not connected to a network, or to anything,” said Robert Suttle, Sero’s assistant director. “[Networks let] people know that there is a community of people out there like themselves.”

Encouraging results from the Network Empowerment Survey, developed by Sero and co-sponsored by several national and global PLHIV networks, were presented by Anna Forbes during the pre-conference and showed that PLHIV networks of many kinds have sprung up across the country in recent years.

“Networks of PLHIV are important across this country, but more so than ever in the South,” said Nic Carlisle, Southern AIDS Coalition’s executive director. “[The Southern states are] home to the most people living with HIV and dying from AIDS, including the most women, youth and people of color. We must respond to the disparities that fuel this epidemic in the South before we can realistically hope to end the domestic HIV epidemic, and that response must include PLHIV.”

At an event whose purpose is empowerment of and connections among PLHIV, the Network Empowerment Pre-Conference was right at home. The 18th PLC featured more presenters living with HIV than ever before. “We’ve been sort of a training ground for HIV-positive people to find their voice,” said McKay. “This year we had so many people that used to be just attendees here, and now they’re doing presentations.”

Sero and PWN-USA also co-hosted a workshop track focused on HIV criminalization. The intention was to provide “practical trainings on state advocacy, grassroots organizing, coalition building, messaging, and familiarity with the human rights, legal, and public health issues related to HIV criminalization,” said PWN-USA executive director Naina Khanna.

In one workshop, Carolyn McAllaster of the Southern AIDS Strategy Initiative pointed out that her organization’s nine states of focus have some of the most draconian HIV criminalization statutes and practices, as well as some of the most dismal HIV rates in the nation, and that the connection is no coincidence. “When we talk about HIV criminalization laws, we’re talking about stigma,” she asserted.

“HIV criminalization impacts all PLHIV, and creating networks of PLHIV is one of the strongest tools we will have to modernize these laws,” said Tami Haught, Sero’s organizing and training coordinator. “’Nothing for Us, Without Us’ isn’t just a motto; it is a call to action.”

The criminalization track was part of the Activate U! Advocacy Academy, conference sessions earmarked to prepare participants to be advocates. Sessions focused on health care advocacy, voter registration campaigns and building communications skills. Other PLC session topics included successful aging and HIV, laughter as therapy, HIV/AIDS history and many more.

There’s also a healthy dose of fun at PLC. This year, magician Daniel Bauer wowed the crowd with his one-man performance, Beyond Belief, in which he weaves magic and escape artistry with his own powerful story of living with HIV, surviving addiction and losing his brother to AIDS complications. After the show, karaoke kept attendees laughing and singing well into the night.

According to McKay, roughly half of the 375 people registered for the conference have been to at least five previous gatherings. What keeps people coming to PLC, year after year? For Franceina Hopkins of Lexington, South Carolina, networking with and learning alongside advocates from other states brought her back for her fourth conference. “I come to a healthy environment of learning,” said Hopkins, who was diagnosed with HIV in 1995. “If I educate myself, then I’m a better advocate to the people that I’m trying to represent, including myself.”

When Robin Webb, who was diagnosed with HIV almost 30 years ago, returned to his native Mississippi, he found none of the kind of support groups and PLHIV networks he’d known in New York City. “I found this conference that way, about 15 years ago,” he said. “I made a commitment in my own mind that this is a must every year, because it is such a lifeline.... I believe strongly that we need more of these around the country.”

“Many people have never disclosed to anybody; they don?t know anybody else that?s HIV positive,” Lennox-Smith said. “For them to be able to come here and be around people like themselves, who face the same challenges, is very empowering....It’s essential to changing perspectives, and building self-esteem.”

“I used to get crazy about some attendees skipping out on workshops,” McKay said; “But I realized that networking is just as important as the classes.... It’s those conversations in the hallways, out by the pool, at the dance.”

As second-time attendee Jimmie Samuels put it: "It’s like a family occasion. I draw on all of this energy here and I take it back to Memphis, and I follow up with people, on Facebook and such.

“I love that, because we don’t live in a vacuum; we don’t live unto ourselves. It takes all of us together, as a village.”