Post-traumatic stress has become something of a household phrase, having gained visibility due to the large number of war veterans who have been affected by it. PTS (formerly known as PTSD, and now called PTS to reduce stigma) can be particularly debilitating in that its wounds are not visible, it's often suspected of being "not real," and it can lead to depression, isolation, substance abuse and even suicide.
Long-term AIDS survivors Tez Anderson and Matt Sharp recognized similarities between war-related PTS and what AIDS survivors have experienced since the early days of the disease. They call it AIDS Survivors Syndrome (ASS) -- and they've created an organization to help those who suffer from it: Let's Kick ASS (LKA).
"The intention is to give a voice to people who feel voiceless," Anderson says. "It's a bitter pill, after all we went through -- you lose all your friends, you lose your lovers, you lose your community -- and then you feel voiceless? It's really sad."
On Sept. 25, LKA held its second annual town hall meeting at the San Francisco LGBT Center's Rainbow Room. Around 100 people filled the room, and Anderson and Sharp were both still jazzed about its success.
Sharp, one of the leaders of the original ACT UP Golden Gate, continues to be an activist and community organizer. Despite all this, he said the forum was a new experience for him: "I've rarely been in the kind of 'open call' situation with a specific group of people where there was so much engagement, so much thought -- people were really thinking about the situation and how to move forward in a real concrete way. I hadn't seen that in that kind of forum before."
Anderson agreed and spoke about how gratifying it was to present LKA's draft proclamation and vision statement to the crowd and see them working to make sure it included everything they wanted.
"By and large, they were really moved by it," he said, noting that there were a few things that the audience thought should be added.
There was at least one forum comment that didn't result in a change: Someone didn't like that the group's name has "the word 'ass' in it." While Anderson says he understands the need to respect everyone's input, he said with a laugh and a little steel in his voice, "We're not changing the name. That horse has left the barn."
He and Sharp plan to incorporate the input of the crowd into the final document, which will then become the cornerstone of LKA. "I want it to be their document," Anderson explained. "It should speak for and to them and not just come from the top."
LKA is looking toward an ambitious future. Anderson and Sharp share the vision of a national network of chapters. There's currently long-term survivors support groups in places like Portland, Oregon, and Albuquerque, New Mexico, where Sharp heard about a celebration on June 5 to mark the first Long-Term AIDS Survivors Awareness Day.
Beyond providing support and services to survivors, they realize there must be a political/policy agenda, an education/outreach plan so that policy makers and community leaders can be informed, and organizationally, a way to fund LKA that makes it possible to have paid staff, necessary equipment and operational efficiency.
Sharp's particular passion is research. He says that there's a lack of data to back up the anecdotal evidence from the community. "We don't know how many people are being affected by this. We don't know who they are or where they are," he says. "We really don't know what ASS is -- we have a definition of it, but we have no evidence to back that definition up."
Sharp believes that research could be coordinated to provide the necessary data, especially if LKA members are engaged nationwide.
Both men acknowledge that their vision seems mountainous at times, but they also seem to have momentum on their side. They are wise enough to recognize that in order for word to be spread, there must be identifiable leaders. Anderson is now being asked to speak as an expert on panels and at conferences, while Sharp works more "behind the scenes."
One of the statements in the LKA proclamation is, "It is now time to become fully engaged elders, teachers and leaders." In dedicating themselves to doing so, they continue to weave a thread into the tapestry of the AIDS community that began during the "plague years" that they lived through. The message of this thread is clear and powerful: You are not alone. You're not abandoned. You're not judged. We're here -- just come out and let us embrace you.
Sue Saltmarsh has worked in the HIV/AIDS field for over 20 years, the first 10 as an herbalist and energy therapist at Project Vida, the last six as a writer and copy editor for Positively Aware magazine. She is now a freelance writer and editor and is also able to devote more time to her passion as founder and director of the Drive for Universal Healthcare (DUH).