May 4, 2012
I recently was approached about writing a blog posting by one of our more youthful AIDS United staffers. When I asked what the theme of the post would be, he gingerly answered, "Well, kind of like reflections from an experienced activist. You know, someone who has been around a long time and has seen a lot."
Here is what I heard: "We need someone old to write a blog and share some ancient history." It's a good thing I take joy in my rapidly approaching 50th birthday, AND that I actually know what a blog is! I mean, I wrote my first blog post a few months ago, so I'm pretty savvy.
As I sit down to write this, I think back over the last 25 years, and how consistently present HIV/AIDS has been in my life. I graduated from high school in 1980. I spent the early 80's learning all about being gay, and having quite a bit of fun along the way. It was a time of celebrating our sexuality and coming together to demand our rights. Then, several friends became ill and confusion and fear spread in gay communities across the United States. The "gay disease" had hit. Fear turned to frustration and anger as gay men in my generation -- who were at that time in their 20's -- became ill and died far too young.
My friend Gary was diagnosed with HIV and said, "AIDS is like war. Everyone is dying around us, and there is no going home." A decade that had started out like a party had turned into a war. And yet, nobody outside of the queer community seemed to acknowledge it, talk about it, act on it. We were watching young men waste away before our eyes, ending their lives looking like 80-year-olds. Stories of cruel and humiliating treatment of people with AIDS were far too common. I remember wondering how human beings could be so cruel in the midst of such suffering. I suppose that these kind of thoughts meant that I was growing up growing up with AIDS as a catalyst for love, community, cruelty, injustice, suffering, grief, and the absolute resilience of the human spirit.
Those of us oldies who are still doing this work know that those were the worst of times, and yet in some ways, the best of times. We mobilized our community to take care of our own. We would sit and hold the hand of our dying loved ones, we would find the one or two doctors in a community that would dare to work with AIDS patients, we would organize food pantries and transportation. We mobilized our community to get mad and ACT UP! We took the horror and turned it into action that would forever change us.
As traumatic as the early days of the epidemic were, today we are faced with more complex and persistent challenges. Resources are shrinking rapidly, stigma still thrives, and the American public does not see HIV/AIDS as an urgent issue. We are failing in our efforts to prevent new infections and engage and retain PLWHA in care. The anxiety of not knowing what the ground will look like with the Affordable Care Act and The Ryan White program is palpable. And yet, we have treatment and new prevention strategies that could conceivably end AIDS! I could not have dreamed of this reality in the 1980s.
Unfortunately, our growing toolbox to end this pandemic is hugely incongruent with resources and realities on the ground. I was trying recently to explain this to my son, who is 8 years old and wanted to understand more about my work. He listened and looked confused, and then he said, "That's stupid!" Sometimes kids just hit the nail right on the head. In some ways I feel more frustrated than I did in the early years. Everything seems achievable, and yet out of reach. How do we build the bridge to our first AIDS-free generation? I think we need some of our passion, our organizing, and our refusal to accept the word "no" from those early years. We need to remember the simple truth that we are always stronger together in the pursuit of basic rights and care for all. I think we need to stop the destructive turf wars among leaders of impacted populations in the epidemic. The truth is that until none of us are caught in the crosshairs of HIV/AIDS and all of its intersecting issues, we all lose. We have a challenge of mammoth proportions: securing the resources and capacity on the ground needed to end HIV/AIDS once and for all. Of course there will always be room for disagreement and robust discourse, but never for warfare with each other. It is a disservice to PLWHA everywhere, and those who have gone before us, to let bickering and posturing rule the day. I want to remember each day why I got into this work, and not lose sight of how far we have come.
I once heard Bill Clinton say, "If we can beat AIDS, we can do anything we set our minds to." I agree with Bill on this one. There is no silver bullet here, but I do think that we have 30+ years of incredible achievement, suffering, resilience and wisdom to push us toward ending AIDS. Let's work our way closer to that light at the end of the tunnel together.
Maura Riordan is the vice president for access & innovation.