AIDS/HIV | Ari Ezra Waldman | Film | News

'How to Survive a Plague', ACT UP, and Marriage Equality Activism



Last night, I had the opportunity to attend a screening of David France's How to Survive a Plague at the IFC Center in New York City. It is a story about ACT UP and the AIDS crisis in Greenwich Village between 1987 to 1996, but more accurately, it is a story about the struggles and success of several leading figures in that movement: How a few men took their diagnosis and became more educated about medicine and clinical trials than many PhDs; how a straight housewife took it upon herself to educate the community about the FDA and the NIH; how one man's pestering of Bill Clinton in 1992 got HIV/AIDS into a nationally televised debate.

Some of these stories ended tragically, as too many of us know too well. And, some of these stories are still being written, as evidenced by the many healthy HIV-positive members of our community today. It's a film worth seeing not only for its stark reminder of the sense of anger, despair, and urgency at the time, but as an inspiring story of unity, community, and love. No matter your age, your HIV-status, gender, or political involvement, How to Survive will make you cry; but the film's final scenes may be most rewarding few minutes you spend in a theatre this year. It is, after all, a story about hope, not death, life, not sorrow. It is the story of surviving the AIDS crisis. And, even as we mourn those vibrant young people AIDS took from us, we are so grateful that so many did survive and are, to this day, a part of us.

First-time director David France, an investigative reporter by trade, said that he did not time the release to coincide with any particular developments in the world and the gay community today, but it is hard to watch How to Survive without thinking about Occupy Wall Street, the Arab Spring, and, most notably, our community's quest for the freedom to marry. The times are different, as are the underlying goals. But, it is worth asking: What can we learn from the community's mobilization to fight AIDS?

I begin a discussion AFTER THE JUMP...

Surviving the AIDS crisis is qualitatively different than seeking the freedom to marry. One is literally a fight to avoid death; the other is important, but in a less urgent, immediate, instinctual way. Fighting against a plague threatening to wipe us out of existence prior to any notion of rights, honor, and equality. Life is a prerequisite for love.

It should come as no surprise, then, that ACT UP was fueled by urgency. The federal government's and hospitals' slowness to react and the Reagan Administration's willfully blind refusal to even mention AIDS in any real way coupled that urgency with anger and a need for grassroots activism. Urgency, anger, and grass roots power brought unity, a movement, and, ultimately, some progress. There may have been excesses and mistakes along the way; How to Survive is honest in its retelling of the movements difficulties. But, no one here is in a position to judge.

We are, however, in a position to learn. The quest for the freedom to marry is different. Our journey is less urgent. Edie Windsor's late wife, Thea, passed away before the couple could see the states and the federal government recognize their marriage. And, every day we go without marriage rights, elderly men and women are missing their chances to be treated with honor and dignity. But, no one is dying, no one is going blind, no one is getting too sick to walk.

Our movement is less angry. We have the President on our side, and we knew he was even before he said so publicly. We have two ex-presidents and ex-vice presidents, 14 current governors, and 166 members of the House and Senate on our side. We face hostility all the time -- from the venial National Organization for Marriage to the outright lies of wingnuts like Bryan Fischer and most of the Republican Party leadership and members of Congress. But there is no sense that people are taking a blind eye to our rights.

The quest for the freedom to marry is not as grassroots as the fight against AIDS. This is not a value judgment. The fight against AIDS had to be grassroots; the elite not only ignored our community, but they would wear surgical gloves just to get near us. Today, the fight for marriage is in the courts, at the ballot, and in the hearts and minds of the great movable middle of America. By their nature, court cases and political battles require a cadre of leaders that may reflect the will of the grassroots but has the JDs to make them a little different. That is not to say that the movement is without an essential grassroots element: we will win the freedom to marry in 3 or 4 states in November because of the thousands of people on the ground in Washington, Minnesota, Maine, and Maryland, making phone calls, and telling their stories.

Therefore, we could conclude that the lessons of ACT UP are not immediately evident for the marriage movement. I disagree.

The fight against AIDS made its greatest strides when our community was united, not divided. Before ACT UP split off into factions, a story How to Survive tells well, it succeeded in moving mountains to get clinical trials and experimental medications on the market. Despite some setbacks, their unity delivered progress.

We have already learned that lesson. The disunity that is a notorious part of the conventional wisdom about the gay rights movement disappeared in the fight for marriage freedom in New York State and is nowhere to be found in Freedom to Marry's coordination with local groups in the four states with marriage on the ballot this year. Even in the Perry case, which is challenging California's ban on marriage freedom, what many in the gay media reported as discord was more mirage than anything else. And, besides, the American Foundation for Equal Rights and other mainline gay advocacy groups are on the same side in the fight to win the right to marry at the federal level.

The fight for lifesaving drugs encouraged ACT UP and its offshoots to work with pharmaceutical companies and other allies in the medical communities because they held the reins to a possible holy grail of treatment.

We have also learned that lesson. The 2008 failure in California was, in part, the product of too much insulation, too little work reaching out to different communities, and a bizarre insistence on divorcing marriage from love. Today, we have the freedom to marry in New York because we brought together a vast coalition of gay groups, business interests, religious houses, and other allies to show Albany that this was a human issue, not a gay issue. Our straight allies are the gateways to the moderate middle of America whom we must persuade in order to win.

Most notably, the 1980s version of ACT UP teaches us that hope springs from perseverance and involvement. In the face of so much death and fear, these gay men and women stood up when no one else would, challenging the world to pay attention to something it was willfully denying for years. They challenged Bill Clinton to think about AIDS and slowly, but surely won over countless members of Congress to their cause.

We have learned that lesson, too. The freedom to marry has to be fought, continuously and on all fronts. We need to bring various cases in the states, as Lambda Legal is, and as the ACLU, the Gay and Lesbian Advocates and Defenders, and Lambda are all doing regarding the Defense of Marriage Act. We need to win in the four states in November and we can help by making calls, donating money, and telling our personal stories.

The fight for marriage is such that it allows us to slow down, be respectful, and methodically change hearts and minds by living our lives and being good citizens. Those who lived through the AIDS crisis in Greenwich Village, in the Castro, and in West Hollywood did not have that luxury. We must appreciate the gravity of those times and be thankful so many of our loved ones survived. And, when we do win the freedom to marry -- and we will win it -- we should remember that without those who survived a plague in the late 1980s, we wouldn't be here to enjoy the still-fragile freedoms and growing acceptance we have earned today.


Ari Ezra Waldman teaches at Brooklyn Law School and is concurrently getting his PhD at Columbia University in New York City. He is a 2002 graduate of Harvard College and a 2005 graduate of Harvard Law School. His research focuses on technology, privacy, speech, and gay rights. Ari will be writing weekly posts on law and various LGBT issues. 

Follow Ari on Twitter at @ariezrawaldman.

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  1. This is not an intellectual comment, it's an emotional one, and no less respectful because of's 1.00 am and I need to get to bed....

    But your post has touched me, made me sad, made me remember the bitterness, the desperation,the intimidation, the sheer anti gay atmosphere that carried Clause 28 in the UK, that caused our friends to be shunned...........
    What kind of people were those ?Christians ? Hardly ! they were the same ones that still shout their shrill bigoted bile.......but have diverted their hate towards thwarting our demands for equality.

    But you remind us of the intensity of the struggle and the void of our loss and we still need to hear and remember.
    I will see that movie and cry.
    Thank you, Ari.

    Posted by: JackFknTwist | Oct 24, 2012 8:08:36 PM

  2. What community?

    Posted by: Mitch | Oct 24, 2012 8:38:31 PM

  3. This is what I learned in the 80's: Silence = Death.
    It was true then and it's true now. We can't be silent. We have to make our voices heard.

    Posted by: kit | Oct 24, 2012 9:03:56 PM

  4. The CIA created the AIDS virus to kill off
    gays and minorities. The Catholic Church gives millions of dollars to NOM, the National Organization for Marriage and they are the ones who are stopping gay marriage. Truth is truth.

    Posted by: Rick | Oct 25, 2012 1:34:46 AM

  5. another beautiful from my favorite towleroad writer.

    Posted by: simplet0n | Oct 25, 2012 4:47:01 AM

  6. Thank you for the review and thoughtful commentary. I've often wondered what it must have been like to have lived (and been loud) through that era of savage death and activism. These courageous men I will never know who faced imminent death and who at the same time found a laser-focused purpose...

    Today's fight seems frivolous by comparison, but then I read somewhere and agree that marriage equality is our mandate. A victory we will win not just for our future, but as token recompense to the memory of those who didn't survive a plague.

    Posted by: Jesse Archer | Oct 25, 2012 5:40:26 AM

  7. Revisionist BS that ignores that one of ACTUP's crowning achievements was giving the pharmaceutical industry carte blanc to do whatever the f*ck it wants to do, so long as it can manipulate bunch of stupid people into falling for the battle cry "Drugs Into Bodies".

    Thanks for nothing, ACTUP, and all the AIDS douchebags that seek to still define gay men as eternal patients in need of constant medical intervention, and thanks ever so much for lying and ignoring that HIV and AIDS are contrivances used to oppress us still.

    Shut up and take your f*cking meds, you bunch of f*cking cattle.

    Posted by: GiveMeAFuckingBreak | Oct 25, 2012 9:19:39 AM

  8. Beautifully written, as always, Ari. And nice point, Jesse.

    As someone who lived through the 70s and the 80s and lost lovers and friends, I fight for the right to marry so that we will never be marginalized again.

    But I also believe that fighting for--and attaining--the right to marry are not frivolous. Both hold the promise of higher self-esteem for LGBT youth.

    Not that everyone HAS to marry. Just that everyone CAN. Maybe the possibility that we can be in loving couples without the judgment of families and society will remove from externally imposed shame and help some in the next generation enjoy things like sex and drugs without abusing them.

    It was terrible enough to see friends die from the disease, but it was made so much worse by the shame some of our dying friends were made to feel by their families, the government and the media.

    Posted by: JeffNYC | Oct 25, 2012 9:29:22 AM

  9. The anger is still there, etched onto one's soul, along with the troubling memories of those horrific times.

    One cannot forget the icy, calculating indifference of a power structure that dismissed us as not worthy of any consideration as we pleaded for help.

    One cannot forget the perverse glee with which our enemies on the right spectrum of politics viewed our suffering, almost celebrating it as a validation of their belligerent hatred and bigotry toward gay and lesbian Americans.

    One cannot forget those beloved friends who were felled by that merciless, infernal virus, their lives ended much too soon, enduring a suffering that none would wish upon a worst enemy.

    One does remember, with an intense, enduring pride, those men and women who decided then that "enough is enough", and coalesced into a powerful movement that shook the power structure, carrying us to where we are today--a force that cannot be ignored nor denied nor disrespected without there being consequences for those who dare to do so.

    One reads the commentary written above and understands that the author, perhaps, is but a generation removed from those times, looking back from a place of relative comfort with some understanding of what went down and how we got from there--a devastating, merciless epidemic that deemed to lay waste to us all; to here--slowing down, being respectful, methodically changing hearts and minds by being "good citizens" so that we might acquire those civil rights that should be ours by default.

    But, it does well to remember that it was the anger and fury of those who bravely stormed the Capitol steps or sat down en masse in the streets and blocked traffic or disrupted Wall Street with loud voices or stood up in churches in silent protest or physically fought back against police brutality that is the direct link to the comparatively sedate marriage-equality battles of today.

    Thanks to the battles ACT-UP fought and the tactics learned from those battles, we have been able to effect positive changes not just for the LGBT community but for society as a whole.

    Yet, LGBT people are still fighting for that which should rightfully be ours: full civil equality. We are still encountering resistance to realizing that equality.

    Niceness and civility will always have their places and uses but sometimes the only way to make the changes that are needed is get right up in the faces of those who deny us that which is ours and let them feel the heat of our anger.

    Therefore, do get angry--very, very angry. Righteously angry. It is still needed for the struggles we face. The fight continues, not just for ourselves but for all who seek justice and equality.

    Posted by: MIkeInQueens | Oct 25, 2012 12:12:46 PM

  10. I usually enjoy your posts, but I'm rather put off that while distinguishing the fight against HIV/AIDS and same-sex marriage, you basically only use the HIV/AIDS movement as a learning tool to focus on the fight for marriage equality. You had nothing to say about the movie and the lessons it teaches us about the continuing struggle against HIV/AIDS in the US? Particularly when HIV infection is growing among MSM and people of color and we still face ridiculous challenges in getting our government to funnel the same level of resources into prevention and treatment for people living with HIV/AIDS as it does on the global front?

    A very limited analysis, and perhaps disturbingly illuminating about where our priorities are.

    Posted by: luminum | Oct 25, 2012 12:32:50 PM

  11. @luminum: thank you for your comment. but me saying that we can learn some lessons for one context does not imply that we cant learn other lessons for another context. theres a lot to write and discuss about that time. cant fit it all into one blog post.

    Posted by: Ari Ezra Waldman | Oct 25, 2012 12:40:11 PM

  12. Thank you for this, Ari. I've seen the doc and it seared my heart.

    The Normal Heart is once-again playing in Toronto, and I've been bringing some of my younger friends to see the show - there's a very important era of our collective history in which vanguards stood up and shouted loud with a ferocity and bravery that humbles me.

    To the men and women who refused to stay silent, and lost everything in the process, thank you thank you thank you from the bottom of my heart.

    Posted by: LittleKiwi | Oct 25, 2012 12:51:14 PM

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