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How Has Activism Changed Since the Early Years of ACT UP?

April 23, 2012

How Has Activism Changed Since the Early Years of ACT UP?

Say what you will about ACT UP (AIDS Coalition to Unleash Power): There can be no doubt that the HIV/AIDS direct-action group, which turns 25 this spring, helped wake up the United States to the largely ignored crisis growing in its backyard. Results of ACT UP's titanic work can be seen today both within and outside the HIV community, in realms from the drug-approval process to graphic design, and certainly in political activism. We asked community members -- some of them past members of ACT UP themselves -- how they believe activism has changed since ACT UP first stormed onto the world stage.

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Jeannie Wraight

Jeannie Wraight

HIV Treatment Activist, Founder, HIVHaven.com; Bronx, N.Y.

I caught the tail end of ACT UP's heyday. There were so many of us and we were dedicated, militant and organized. It's hard nowadays to get a group of people together more than 15 strong. We were angry and anger is an amazing motivator. It seems to me that most of us are now so worried about being politically correct and hurting others' feelings that we don't speak up when something is wrong and thus things are slow to change.

Being angry doesn't equate to having a negative attitude. Being an activist is not a popularity contest. A real activist is often a lone voice of dissent in a room full of smiling faces, saying and doing what needs to be done to save lives. In losing our anger, we've lost our will and power to force change when it's desperately needed. The dying hasn't stopped for all of us. We need to find our anger again.

Nelson Vergel

Nelson Vergel

Founder, Body Positive Wellness Clinic and Program for Wellness Restoration; Houston, Texas

ACT UP was fueled by our desperation to take control of our futures even in dark days of death and turmoil. Without this "in your face" approach, many things that we now take for granted would have never happened or taken years to be achieved. But this desperation is now being replaced by some complacency and the need to lead a normal life.

Now that people are living longer and healthier in the United States, grassroots activism has decreased considerably as people reintegrate into a regular life. Many activists have gone back to school or to work. Some have started families. But some still remain out in the field advocating to eliminate ADAP waiting lists, exposing high drug pricing, working on prevention campaigns and outreach, and engaging researchers and industry in HIV cure research. Activism has moved out of the streets and is now happening within corporate meetings with pharmaceutical companies and the FDA.

I am concerned that treatment activism has not been able to attract younger people in the past 10 years. Some of us, old dinosaurs, are still working on issues that impact drug development and policy, but as we get older it is important to mentor younger people to follow our path and continue the work. The cure is on the horizon but still a long way out.

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Terri L. Wilder

Terri L. Wilder, MSW

Social Worker and AIDS Advocate, New York City

I don't see the passion or urgency that we saw in the late 1980s to 1990s. We seem to engage in more "polite activism" (i.e., dressing up and meeting with politicians, etc.) than street activism. Both types of activism have their place but I am concerned because my home state of Georgia has the largest ADAP waiting list in the country. Maybe we need to kick it up a bit and hold a nationally coordinated "die-in" demonstration in each state that has an ADAP waiting list. I don't want my friends to die because of a waiting list.

Kenyon Farrow

Kenyon Farrow

Communications Manager, Housing Works; New York City

I think what's changed the most about AIDS activism over the last 25 years is that we've lost a social justice framework of AIDS as one marker of racism, homo/transphobia, and poverty. It's sad that I even have to argue about this to people who work in HIV as much as the broader public.

Rusti Miller-Hill

Rusti Miller-Hill

Trainer, Cicatelli Associates, Inc.; New York City

HIV activism has changed dramatically. We have become compliance with our voice and our power as a community. As a former member of ACT UP, I miss the days of old when as a community we raised our voices and took a stance for what was right. With changing times and ARVs the fight is not the same. As a woman living with AIDS, I spend more time educating folks about where we come from -- and reminding folks that we are still dying in spite of the progress with medication, housing and other benefits. HIV is not just a chronic illness; it is still an epidemic as long as the numbers continue to increase in my community. It's not just about taking some pills; it is about saving lives. So let's STAND UP and ACT UP!!!

Maria T. Mejia

Maria T. Mejia

Small Business Owner, HIV Advocate; Miami, Fla.

In 1989 when I was infected, I was 16 and I didn't even know who Larry Kramer was. … I learned about ACT UP and Larry Kramer later on in my years living with the virus.

HIV activists are different now in the aspect that we have more resources like media. I myself use it all over the world to get my message across. … I will always be grateful to people like Larry Kramer that fought for our rights and paved the way for us newer activists. They didn't have the Internet. They didn't have the information that is available now. All they knew is that something had to be done and people in their community were dying ...

The newer activists have to have that passion inside of us to fight for our RIGHTS! Every day I hear of another ASO being cut off. Why are we sitting back and letting things like this happen? Are we going to permit ACT UP and other activists to have worked so much in vain? Do we have to actually see people dying and dropping like flies to do something?? I know many are in denial, feel shame, have fear and they just are dealing with life or protecting their families; so the ones that are available to do something must get together and FIGHT! FIGHT FIGHT! and never tear each other down.

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Brandon Lacy Campos

Brandon Lacy Campos

Co-Executive Director, Queers for Economic Justice, New York City

Activism has gone viral, it's gone digital, it's gone communal, it's gone online and global in a way that wasn't able to be imagined 25 years ago because we couldn't imagine the technology and the gift of communication that technology has provided in this time of reduced funding, reduced attention and international "othering" of the AIDS pandemic.

Christa Douaihy, Esq.

Christa Douaihy, Esq.

Public Interest Attorney, Bronx, N.Y.

As a public interest attorney working to ensure dignity and civil rights, I stand on the shoulders of ACT UP. Their fierce activism and creative vision shaped and inspired a generation. AIDS activism has changed since those early days. The struggle against AIDS stigma has always centered on fighting racism and homophobia; today's fight must contain an additional emphasis on anti-poverty measures. More than ever, we need to confront economic injustice and minimize the harsh collateral consequences of criminal arrests. These issues are critically important in eradicating bias against people living with HIV/AIDS.

Khafre Abif

Khafre Abif

HIV Advocate, Founder, Cycle for Freedom; Atlanta, Ga.

ACT UP was a powerful movement undertaken by the group to achieve political, economic and social justice to impact the lives of people living with HIV/AIDS. ACT UP by definition [(verb) act up: to make itself felt as a recurring pain] did just that.

Now 25 years later I see less nonviolent and violent activities which target persons, groups, or property deemed offensive to the direct action participant. We as a community are no longer willing to sacrifice our individual selves for the collective "we." The business of AIDS has separated the "collective we" into subpopulations fighting each other for focused attention.




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