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How To Survive A Plague: On ACT-UP's 25th anniversary, a Look at Activism in the Internet Age

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Like many Millennials who self-identify as "AIDS activists", I learned about the organization ACT-UP (the AIDS Coalition to Unleash Power) during high school, when I first became interested in HIV/AIDS activism. I read a few articles, saw some photos of protest, but struggled to navigate their website --  my generation's medium du jour -- and thus I never had a sense of why they were considered so legendary.

It was not until this past Saturday night that I first saw the faces and heard the voices of ACT UP's founders via archived video footage, at a screening of How To Survive A Plague, a new documentary about the history of AIDS activism in America.

The film's timing was impeccable, as this weekend marks 25 years since ACT-UP's first protest; the kind of clever civil disobedience that brought AIDS into America's moral discourse by targeting political, scientific and religious leaders in the quest for a cure. The timing was also poignant for me, a 25-year-old whose AIDS activism developed in a world where HIV treatment has always existed.

ACT UP fought to survive and survive they did, so that by the time I was a teenager in 2000, life-saving HIV medications existed and were, for the most part, affordable and accessible in America. And now the "AIDS problem" my generation has taken up is no longer how to survive a plague, but how to end one. Research suggests that people successfully on HIV treatment become virtually unable to pass the virus on -- meaning that if everyone in the world with HIV had access to these drugs, there would be no further HIV transmission and no more AIDS deaths. There are, of course, political and systemic and behavioral challenges that come with getting 14.2 million people on a daily regimen.

Watching How To Survive cast a guiding light on my thoughts about solving those problems. ACT UP was comprised of people who suffered from a disease they could not WebMD or Wikipedia for a solution, and who communicated to the masses without platforms of YouTube, Twitter and Facebook. Would Millennials -- who, by contrast, oftentimes ditch protests and instead sign online petitions, 'like' pages, share viral videos and write blog posts -- have survived as activists under those circumstances?

I don't mean to get down on my generation. In fact, I think many of us wisely avoid traditional activism in favor of practivism -- practical activism. Rather than protesting at the offices of the Global Fund or the World Bank to galvanize more funds for AIDS treatment, we just fundraise for a clinic in a highly affected are and make treatment happen directly. Online tools can raise thousands in a matter of hours. A well-made viral video can circulate to millions in a single day.

There are many ways in which our digitized world has allowed us to raise awareness like never before, but the film's presentation of ACT UP's legacy reminded me of how the Internet gives us the easy way out in some ways:
  1. ACT UP members earned the title of experts in a pre-Google era.  They sought out, befriended and studied under leading scientists so that when they stormed FDA and NIH offices, they blew away decision-makers with their detailed knowledge on the topic of HIV drug research. They didn't just raise their fists, they studied, analyzed, created and convinced experts to adopt a new concept of 'humane' clinical trials. I wonder: In a world with endless information easily available online for all (even entire college courses like MIT OpenCourseware), rather than being empowered, do we end up inundated and perhaps less likely to talk to and learn from one another?
  2. ACT UP members fought for their lives and the lives of their neighbors. "You are my murderer, in your suit and tie," one member shouted directly at a pharmaceutical company executive. "These are the people who know what's going on because they're dealing with it everyday!" yelled another ACT UP activist about her peers. While it's quite beautiful that the Internet lets us learn, and thus care, about people millions of miles away, will strangers always be a significant degree less committed to a solution than sufferers and their immediate circles?
  3. ACT UP members worked together on a united agenda. Sure, there was in-fighting and internal politics and debated priorities. But there was a central struggle -- to find a way to survive AIDS -- and it was fought for with maniacal focus and determination. As we fight now to end AIDS (and poverty and global warming and warlords), does our culture -- a culture that facilitates instantaneous  creation of brand new websites, campaigns and social media accounts -- also make us less likely to reform, consolidate and coordinate the actions of the actors already in existence?
Millennials have technological tools at our fingertips that ACT UP members never had. But unless we use them correctly and strategically we may end up with an even greater challenge than our activist predecessors.

How To Survive A Plague was a powerful reminder to think more critically about activism and public service, and a motivating force to keep presenting Everyday Ambassador, to continue asking audiences to seek out more in-person interaction -- especially with people whose opinions challenge their own -- and continue asking people to not only cross country lines, but also comfort zones. Because ACT UP's legacy teaches us that surviving a plague means facing opposition relentlessly, strategically, respectfully and, most importantly, in-person.

ACT UP's Peter Staley recently wrote on his POZ magazine blog, "It's my sincere hope that this small flood of AIDS docs will teach younger generations about those remarkable and surreal early years, and inspire future activists for all the work that still needs doing."

Until you get a chance to watch the film for yourself, remember that we live in an era of enormous potential.  If you want to end AIDS, you can start by joining the remarkable movement "ACT V".  Poverty? Begin with ONE. But whatever your cause, strive to meet more experts face to face. Form alliances. Keep people affected by the issue in your closest social circles. Share a story over dinner, on the train, at a party -- not just on your Facebook wall. We must recognize that ending any problem means, above all, staying human.

And that's a whole new challenge we will need to overcome as activists raised in a digital age.