The Changing Face of HIV/AIDS Activism

Ask anyone involved in HIV/AIDS activism about the current state of the movement and the answers might range anywhere from stagnated, stalled or quite possibly a bit more optimistic, citing the phrase "AIDS-free generation." The answer typically denotes the person's experience within the community and to some degree reflects their journey with HIV/AIDS. We have inched closer to longer life-expectancy while at the same time creating a diminished a sense of urgency and self-determination that as a community we once had, but now have lost.

An aging activist generation coupled with a naive generation that has been lulled into a pacified state translates into an antiretroviral drug-induced "zombie-fication" that only bastardizes the gallant efforts of HIV/AIDS activists who threw caution into the wind; a determination that would accept nothing other than change. Whether it was raiding the FDA, climbing over razor wire in the pre-dawn hours to demand change or simply stopping traffic with a human chain, linked hand-in-hand or even taking on the Catholic Church in its own territory; the word "no" was not part of the activist vernacular. Gradually the comfort of medicated lives replaced the torment of imminent death and unbearable suffering but that comfort came at a price ... progress.

Declining participation, a problem that has seemingly crippled every facet of the activist community; HIV/AIDS issues are no longer a political hot-button topic which could potentially hurt or hinder a politician's aspirations or career endeavors. It was, in my opinion, that potential which served to motivate politicians and the elite of society to mandate change. It was the Queer elite, who out of desperation tapped into their financial means and influence, establishing the very first activist organizations to provide services for those living with HIV/AIDS. It was a group of people that many times had no prior knowledge of how to develop an organization that when they looked into the faces of friends and lovers dying of AIDS, knew that it would soon be them. They knew that something had to be done and that no one else was going to do it.

I have been told, more than once, that the tactics and actions once employed by ACT UP no longer serve a purpose. This much is clear: the tactics and actions once employed will again serve as the catalyst for meaningful change but only if we as a community put the movement in front of ego. The movement must evolve with the political landscape while maintaining the integrity of our heritage.

HIV/AIDS activists such as those documented in How to Survive a Plague not only tapped into an emotional response but they constructed the blueprint for how to bring about change while staring adversity directly in the face. Adversity that came in the form of former New York Mayor Ed Koch (may he not rest in peace), United States President Ronald Reagan and his entire bigoted administration, just to name a few.

If we are to revive and reengage our base of activists then we must examine what have been our successes as well as our failures. As a community we must, I repeat, we must find a way to integrate long-term survivors with those who are newly diagnosed; no one should feel disenfranchised or left behind. Additionally we must look within our society and align ourselves with others who are facing similar challenges such as patients who are fighting for total coverage of their chronic illnesses that will not be addressed under the Affordable Care Act. We must unify a spirit of bipartisan deal-making with civil disobedience; there is a need for policy analysts and advocates just as there is for protests and actions. Together a multi-pronged approach will ultimately place more pressure on those who are in control and have the ability to address our demands.

While social media has revolutionized how as a community we communicate, it is a contrast from the early days of the movement where telephone chains served to rally people for actions. ACT UP set the standard for weekly meetings that were known for their chaos and heated debates. It was in the midst of this where master plans were developed. A group of people walked in as bankers, thespians and every occupation in between but they marched out as activists.

While there was a core group of activists, through word of mouth others would hear about the movement and they would want to get involved. People would come and people would go. Ultimately as activists would die, newcomers would fill the void. Over time as a generation of patients began to thin out and ultimately AIDS-related deaths began to decline so too did the memory of this horrible time in our culture, but the fight was not yet over.

My friend and longtime activist Eddie Hamilton has theorized many times that it will take a new generation suffering loss before they will find focus and determination to once again engage themselves in the HIV/AIDS movement. "As a longtime advocate, I have now come to the conclusion that some in the HIV community have a sense of entitlement which shouldn't be the case. For those folks, they will never become active until they start enduring cuts. This is dangerous but it is the truth. Like it or not."