I wanted to share the history of the writing of the HIV Long-Term Survivors Declaration: A Vision for Our Future.
About two years ago I said we need a statement to explain who long-term survivors are. Something in the spirit of the seminal Denver Principles written in 1983, but one that lays out the unique needs and circumstances of long-term survivors living (LTS) today. We all wanted to focus the attention of the larger community as well as let LTS know they were not alone.
Over the history of LKA we’ve listened to hundreds of folks in town halls and thousands online starting tell us about their lives, needs and dreams. You can watch our first large town hall held on September 18, 2013 at LetsKickASS.org/video.
We heard from may LTS that they felt forgotten in the current HIV epidemic. The declaration was born out of a desire to raise awareness about those living longest HIV because our realty is very different from those who got the virus later in the epidemic. It is not about dividing us but about saying “Hey do not forget about us!”
The steering committee of Let’s Kick ASS brainstormed a version of the document. A couple of us revised the hell out of that version then on February 19, 2014 we held a meeting to get community feedback about that draft. I also sent it to other stakeholders to solicit their opinions of the earlier version. The longer we listened to LTS we realized that first draft needed serious revisions, refinement and that we could do better.
For instance, that first draft contained our “demands.” But it was never clear to me to from whom we were demanding change. Also some of that first draft was a rehash of the nearly perfect Denver Principles. I felt that the document needed be more original and more accessible. Not written in AIDS Inc. language. I wanted a document that sounded like people speak as well as reflected the needs of the larger LTS population. I’m not arrogant enough to think that I’ve covered all the issues or perspectives but I think I covered the ones that were most often voiced.
Universally the document has been praised. So far the document has been read over 18,000. There are too many downloads to know about and I’ve heard from tons of folks who are sharing it with universities, activists and even heard from a couple of cities departments of public heath. Folks from as far away as South Africa have written to “thank you” and “well done.” But one person on Facebook posted a short comment about the declaration and stated that “It was not recently written.” That is wrong.
What is it about the one disgruntled critic that makes me want to respond? Well, it is that he seems to be a campaign to undermine the work we are doing. Generally, I tend to ignore noise on the internet, but several colleagues have pointed this petty post to me. He has sent other emails to other colleagues that were registering his “displeasure” at this and that, I do not want my silence to be misunderstood. I wanted to address it.
The declaration’s reach has exceeded my wildest expectations. I’m grateful beyond words, humbled and thrilled. But to say that there is nothing new here is simply untrue. The version I just published I painstakingly wrote and revised. There is much new in it and it is based on community input too.
I’ve been an activist for decades. I started as a gay rights activist in Atlanta, GA in 1984. I eventually became an HIV activist after testing positive in 1986. One of the things I know is that everyone is never pleased all the time and some are displeased with everything. I’ve accepted that—though it makes me sad. I believe we are all in this together.
In the end it was me with a blank screen that actually produced the document circulating on the internet. I bears a relationship to the original document because I tried to reflect the ideas I’d heard over the past couple of years. But it eventually went way beyond that because, well, I sat through several HIV and aging trainings and endless meetings and took lots of notes.
In the end I decided to attribute the writing of the document to Let’s Kick ASS, but truth be told, it was, in the end, written by me alone with an iMac screen starting back at me. That is the nature of writing. It is lonely and solitary even if the inspiration comes from others or myself.
I hesitated to publish this because I’m not sure the one critic should get this much attention. But I wanted to set the record straight and clear up any misconceptions.
You can read, download and share our new HIV Long-Term Survivors Declaration: A Vision For Our Future at http://letskickass.org/vision-for-our-future/ and on Medium http://bit.ly/LTSVisionForFuture.
Thank you for your ongoing support of Let’s Kick ASS.