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HIV/AIDS Blog Central

The Changing Face of HIV/AIDS Activism

By Aaron Laxton

February 24, 2013

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."

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Reader Comments:

Comment by: Jim Buresch (Seattle) Mon., Apr. 29, 2013 at 9:32 am UTC
Wow! You're opinion is, I believe, right on target.

I'm sure if you'd had more space you would have brought in the falsity of it being a manageable disease for far too many fellow citizens living in the hallows of West Virginia, the plateaus of Wyoming or the along the back roads of Texas who can't afford if they do have access to medications

How it's only manageable if we have adequate medical, mental, and substance abuse care and continuing support and only IF we have the support of our families, friends and communities.

I along with many of my friends are fortunate enough to live in progressive cities but let's remember the vast majority of our brothers and sisters in need can only imagine having the services we have.

It's far from being a manageable disease.
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Comment by: Shane (Washington, DC) Sat., Mar. 16, 2013 at 5:51 pm UTC
When I used to work in HOPWA housing too many people developed an over-inflated since of entitlement about many programs. Their idea was that the government owed them something as a result of becoming HIV Positive. At the beginning of the epidemic, when people were losing their jobs, homes, and social supports - all because of HIV infection (actual or perceived) it was absolutely necessary to create programs like those funded through the Ryan White Care Act. As a result, those who truly needed the help had to be turned away because those who could lead more independent lives chose to do otherwise... and were convinced that they were consummate victims and that their HIV diagnosis precluded them from being contributing members of society. I resented them for it because I have lived with the same disease for over a decade. I managed to put myself through college, matriculated with a BS degree in Biology and a minor in Chemistry, worked full time, maintained my own apartment without assistance from any program and did so because I'd have felt guilty siphoning resources that were already scarce and needed by someone else whose need was substantially greater. I have seen people lose housing vouchers for failing to pay their portion of HOPWA rent, abuse food stamps and food voucher programs, or lie about their income to qualify for resources that weren't eligible to receive in the first place. And whether you agree or not, these things reinforce HIV stigmatization more than any person's belief about the disease.

HIV can be a disabling condition, but it does not have to be. And my diagnosis as an HIV positive person does not abrogate me from my responsibility to society to do everything I was doing prior to getting infected - to be a contributing functioning member of my community. It also means that I take a special interest in trying to prevent the spread of a disease that has devastated the lives of so many people.
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Comment by: Aaron Laxton (St. Louis, Mo.) Fri., Jul. 19, 2013 at 3:42 pm UTC

I agree that like most programs that are in place there have been abuses and the programs have morphed into something that they were never intended to be. Ryan White is one of those programs. Thank you for your hard work in the movement and for working with those that are living with HIV. -Aaron

Comment by: will kennedy (cork city ireland) Fri., Mar. 1, 2013 at 9:01 am UTC
i have to agree strongly with the artical the changingface of hiv/aids. Here in ireland its as if hiv no longer exists,and the real problem with this is a whole new group of younge gay 18/25 years are a group that new infections are seen. I am positive myself and have been working hard since i became positive in 2007,but its an up hill battal everyone working in the prevetion of hiv are fighting there own little coner and i reall belive that gay,straigh,bixeaul it dose not matter hiv is a virus and dose not care about a persons sexuality,so its time that we all got overourselves and joined together to stamp out stigms,and lack of knowladge about hiv.
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Comment by: Aaron Laxton (St. Louis, Mo) Fri., Jul. 19, 2013 at 3:40 pm UTC

The attitude that HIV is no longer an issue is everywhere. It is something that we all struggle against. Thank you for your hard work with activism; we must continue the fight. Cheers, Aaron

Comment by: Daniel (Webster Groves) Tue., Feb. 26, 2013 at 5:58 pm UTC
A real activist would call this whole essay out as a piece of sycophantic pablum that placates the AIDS gerontocracy with what it wants to hear while ignoring the complexities and realities of what we face. Good thing there aren't any of those awkward people left, or we might have an awkward situation on our hands.
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Replies to this comment:
Comment by: George (Cleveland) Thu., Mar. 7, 2013 at 8:57 pm UTC
Define a real activist ,Daniel!
Comment by: Mark S. King (Atlanta) Sun., Mar. 24, 2013 at 8:13 pm UTC
I'm a smart guy and I *still* had to Google half the words in your comment, Daniel. Whatever point you're trying to make is long lost. So now I have two more words for you: pretentious blathering. I bet you don't have to look up either one.
Comment by: Aaron Laxton (St. Louis, Mo) Fri., Jul. 19, 2013 at 3:38 pm UTC
I always love when my writing invokes a visceral response from readers. Since you evidently disagree with my opinion, what is your evaluation of HIV/AIDS activism today? -Aaron

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My HIV Journey

Aaron Laxton

Aaron Laxton

I am simply a guy who on June 6, 2011, received the news that over 33 million people have received: I am HIV positive. I decided in that split moment to record the journey that I was embarking on so that I might help others as they receive that news.

I am not a doctor and I do not endorse any agenda other than simply living a healthy life. I am an activist and advocate and simply want to make the world a better place. I hold a degree in sociology and psychology. I am a product of the Missouri Foster System and this is one of my main passions, second only to the work I do with HIV/AIDS outreach and prevention.

I embrace a sex-positive model. People are going to have sex; it is a natural part of who we are. However we need to make sure that it is safe. I can be found on weekends throughout St. Louis, Missouri, passing out condoms and safe-sex kits.

I am now an M.S.W. student at Saint Louis University's College of Public Health and Social Justice and the School of Social Work.

Whether in St. Louis, D.C. or around the nation, I always jump at the chance to help change not only policies to better serve those that need help but to also change the landscape of the society that we live in.

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