June 5 marks the first National HIV/AIDS Long-Term Survivor Awareness Day. The day is one that has historical significance in San Francisco, but also globally, because it was the same day in 1981 that the Centers for Disease Control and Prevention announced the very first cases of a new and devastating disease we now know as AIDS.
As a long-term survivor, living with AIDS now for over 26 years, there is not a day that goes by that I do not remember those dark years, all the desperation and tragic loss. For the past 33 years it has been a long road for us survivors, both HIV-positive and -negative, where there is much trauma that has not been addressed for a variety of reasons. We believe this has led to a series of psychological symptoms we call AIDS survivor syndrome, a.k.a. ASS, such as depression, anxiety, post-traumatic stress, and even suicide.
Last year a few us met in local coffee shops to discuss this AIDS survival paradox: the fact that while there are many of us who have survived AIDS to grow into our senior years, there is a great deal of suffering going on. We recognized the stark reality that not only was not much known about this phenomenon, but also nothing was being done. We were left wondering if so-called AIDS Inc. had dropped the ball focusing now on an "AIDS-free generation" instead of the forgotten warriors, now in great need of help. We feared the Denver Principles declaration from the early years of the epidemic had gathered dust on the top shelves in many of our AIDS organizations. Whatever the reasons, we knew something was broken and needed to be fixed. As usual we stepped in to take care of our own.
In September last year Let's Kick ASS held its first town hall meeting at the LGBT Community Center, and the second I walked into the Rainbow Room on the second floor it felt like class reunion. There was an electrifying energy in the room as the meeting commenced that reminded me of an early ACT UP meeting, minus the anger. There was joy in seeing people we hadn't seen in years, perhaps because of isolation or the vacancy of an AIDS community. But as the evening went on that community appeared to be born again and everyone seemed energized to address the variety of AIDS long-term survivor needs we knew were not being met. We heard that survivors needed to open up and talk about the dark days, but more importantly to begin to plan and strategize about reclaiming our lives, ending the isolation and planning for our future. Since that night a coordinating committee formed, developed a mission statement, continued with themed town hall meetings, and held a variety of opportunities for long-term survivors to meet and be together.
Social media interest in Let's Kick ASS and long-term survival issues started to explode. Passionate emails and comments were flooding in from all over the world recognizing the very same survival issues we had begun to see in San Francisco. Tez Anderson, a co-founder of LKA, was passionate about the creation of "a day to call our own" that would have the impact of focusing around the fact that dammit, we're still here! June 5 was selected as the day that would become our own National HIV/AIDS Long-Term Survival Awareness Day.
In San Francisco, Let's Kick ASS is sponsoring this day of activities tailored to honor the experience and losses of long-term survivors and work toward a productive future. The day will start at 11 a.m. with a heart circle meditation and tree planting at the National AIDS Memorial Grove followed by an AIDS Survivor Summit at the LGBT center from 1 to 9 p.m. The summit will involve a series of three talk show format town hall forums that will address challenges and solutions, the importance of meaning and purpose in the lives of long-term survivors, and mobilization and empowerment, the key to our future. Several community leaders are expected to lead and participate in discussions with the audience. In conjunction with the summit, the Expo will involve several local AIDS organizations that now provide services to long-term survivors at staffed information tables. And finally, how can any San Francisco event be complete without a party? A pre-pride reception for long-term survivors and anyone that wants to attend will be held from 7:30 to 9 p.m. All events are free and anyone can join in any or all of the day's activities.
Other jurisdictions across the country are planning separate events tailored to their own communities to honor survivors.
Hoping that another national "Day" event won't be forgotten after it's all over, Let's Kick ASS will continue mobilizing and strategizing around long-term survivors issues. A continuing San Francisco coordinating team will be busy planning more events including town hall forums, social events, and retreats. Importantly, an advocacy agenda that begins with re-awakened principles will seek to address the issues of AIDS survivors today.
Let's Kick ASS is grassroots. We don't consider our work to be service provision, but mobilization and connection. We need energy and we need resources to continue on. Any long-term AIDS survivor, including HIV-negative survivors, are invited to attend activities on June 5, but also in any future planning that will help to bring survivors out of isolation, fear, and distress, living into a future we never dreamed possible.
For more information about the awareness day and Let's Kick ASS visit http://www.LetsKickASS.org or join our Facebook page: https://www.facebook.com/AIDSSurvivorSyndrome.
Matt Sharp is a long-term AIDS survivor, living with AIDS 26 years, and co-founder of Let's Kick ASS. He is also a nationally known and respected AIDS treatment activist, now focusing on research for a cure.