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Definition of Brave: Long Term Survivors Reunite at Town Hall Forum in San Francisco

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The AIDS generation has come alive again. It was apparent in the collective wisdom of over 175 AIDS survivors and their supporters and loved ones gathered in the packed Rainbow Room at San Francisco’s LGBT Center on September 16.

Over the past several months, Tez Anderson and several local AIDS activists had been organizing the town hall forum, entitled "Definition of Brave." The forum was organized to begin to understand and address a series of problems including severe depression, isolation, and suicide -- all related to living through and surviving AIDS for 20 years or more. 

The forum was sponsored by 2 grassroots organizations, Let’sKickASS.org -- referring to AIDS Survivor Syndrome (ASS) -- and The Community Initiative, but had no support from the city's health department or other AIDS service organizations. Many attendees expressed dismay at the lack of inclusion of people living with HIV in city services and care delivery, and urged that concepts spelled out in the "Denver Principles," a manifesto created in 1983 by people with AIDS who demanded that they be included in making any decisions affecting their lives. In fact, it was the beginning of people with AIDS self-empowerment and activism that ended up changing the course of the epidemic.

Oh my friends my friends forgive me

That I live and you are gone.

There’s a grief that can’t be spoken

There’s a pain goes on and on.

-Empty Chairs and Empty Tables from Les Misérables

"I started LetsKickASS.org to begin a conversation and tonight was evidence that the time to heal is now," stated Anderson, an AIDS survivor whose own symptoms led him to the brink of suicide, only to be reawakened by becoming involved again. Since late 2012 he has met with fellow survivors to try and understand this strange phenomenon. This healing process led him to organize this first forum -- and perhaps a new movement. "The people who attended the town hall are ready to start a new chapter in AIDS in which long-term survivors not only have a place at the table but they are seated at the head of the table," he said.

Despite the success of antiretroviral therapy resulting in the survival of many people in the room that night, outcomes of survival are leading to a phenomenon among long-term AIDS survivors. Spencer Cox, a well-known AIDS activist in New York City, died last year as a result of interrupting his medications, but his final days were spent agonizing over the very symptoms experienced by many long-term survivors at the town hall meeting. One of Spencer’s legacies may well be starting a new movement of awareness and action surrounding people surviving AIDS, which has now spread to the West Coast.

For me, the forum felt almost like an AIDS class reunion -- as many in attendance had not seen each other in years -- though there were also many new faces in the crowd. A panel of long-term survivors, all HIV positive except for one HIV negative man, told vivid stories about their lives over the years, while tears and hugs were shared all around the room. It was somewhat reminiscent of an ACT UP meeting in the late '80s and early '90s, minus much of the urgency.

Several gripping messages were delivered by the panelists and from the audience. Gregg Cassin, one of the organizers who helped to moderate the meeting, led a revival-like rousing audience warm-up. He expressed that "In order to create a movement, survivors need to reach out and take care of each other once again."

Ramon Martinez, one of the youngest survivor panelists, spoke of the turnaround in his life that was generated by finding new direction, being of service to one another, and staying engaged. After years of a chaotic life, he went into drug recovery, started school, and has received his doctorate in psychology.

Having recently returned rom Burning Man, Michael Siever, retired director and founder of the Stonewall Project and former ACT UP/Golden Gate member, spoke of the need to find that "certain spark that some have lost and figure out ways to enjoy the next 20-30 years of life."

Bart Casimir, the oldest survivor and only African American man on the panel, came out about his age for the first time. In 1983 doctors told him "only gay white men get GRID" (gay-related immune deficiency). He urged the creation of a lasting Institute on Aging rather than a movement that only has a beginning, middle, and end.

Ed Wolf, an HIV negative man, was recently featured in "We Were Here," one of several recent historical films that movingly retold the early days of the AIDS crisis. Wolf became a Shanti volunteer in 1993 and worked on the AIDS ward at San Francisco General Hospital. He said that the great tragedy of the epidemic was that so many died so young and that today’s survivors have the gift of living. He spoke for HIV negative people who survived the early years, but who have also experienced loss and pain. Several agreed that HIV negative people also had trauma to deal with from the early years.

AIDS survivor issues addressed by audience members included lack of resources in services, health care reform, aging issues, post-traumatic stress, sexual issues, and loss of disability benefits. Eric Ciasullo, a long-time gay and AIDS activist, spoke of how "we built this system of care, we paid into this system, but when protease inhibitors became available all we got was a pat on the head and sent on our way." He urged that we get back on the stick, continue to reinvent disruption, and stressed that if we join forces there is more impact.

One audience member stated, "We need to get off the couch, become active, get involved politically, and come alive again." The energy in the room was formidable that evening and has energized a steering committee to hold monthly forums to turn these words into Action.

The second Long-Term Survivors forum -- with the theme "Turn Words Into Movement" -- will be held October 15 at 6 pm at MCC San Francisco, 150 Eureka Street in the Castro.

See also: Video of Definition of Brave forum

10/11/13