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How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS
One of Entertainment Weekly's Top 10 Nonfiction Books of the DecadeA definitive history of the successful battle to halt the AIDS epidemic, here is the incredible story of the grassroots activists whose work turned HIV from a mostly fatal infection to a manageable disease. Almost universally ignored, these men and women learned to become their own researchers, lobbyists, and drug smugglers, established their own newspapers and research journals, and went on to force reform in the nation’s disease-fighting agencies. From the creator of, and inspired by, the seminal documentary of the same name, How to Survive a Plague is an unparalleled insider’s account of a pivotal moment in the history of American civil rights.
608 pages, Kindle Edition
First published November 29, 2016
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November 10, 2024
“The members of ACT UP had drifted far apart in recent years. Even [Spencer] Cox’s old HIV-positive support group, men who had relied upon one another in the way one does in wartime and made a blood vow to be at one another’s side when the time came, scattered once AIDS went from a mostly fatal disease to a condition that could for the most part be managed. ‘When we realized we weren’t going to die,’ said David Barr, who convened the support group, ‘instead we all got sick of each other.’ That could not have been foreseen at the group’s height. In the epic struggle for survival that consumed the plague years, these men – Barr, an attorney by training; Peter Staley, a former bond trader; Gregg Bordowitz, an experimental filmmaker; Derek Link, a onetime bookstore clerk; Mark Harrington, a film archivist – were among the recognized generals, the architects and administrators of the movement’s public health strategy. Successive presidential administrations sought their insights, and Nobel Prize winners adopted their critiques. Global pharmaceutical companies succumbed to their demands, at first out of fear of guerilla protests and later out of respect for their minds…That anyone with HIV had a chance for an ordinary life was thanks to the work they did…”
- David France, How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS
First, a quick medical lesson: Human immunodeficiency virus (HIV) is the virus that causes acquired immunodeficiency syndrome (AIDS). AIDS is the last, most advanced stage of HIV, which is why they are discussed together as an awful, lethal pairing. The virus works by destroying CD4 T lymphocyte cells, which the body uses to fight infection. As CD4 cells disappear, a person with HIV loses the ability to defend themself against infections, illnesses, and cancers. So-called “opportunistic infections” – such as pneumocystis pneumonia – take advantage of a person’s weakened immunity, and kills them.
Today, HIV/AIDS is a manageable condition. It cannot be cured, but appropriate medications can make a viral load undetectable. This means no symptoms and no transmission. It also means that a person with HIV/AIDS can – again, in the right medical circumstances – live a normal life, dying with the virus, rather than from it.
This – which cannot be stressed enough – was not always the case.
There was a time, not that long ago, and well within living memory, in which HIV/AIDS was a death sentence of the most unappealable type, more certain than cancer, and horrifying in its degradations. Since the start of the HIV/AIDS epidemic in the 1980s, around 700,000 Americans have died of the disease. The death toll around the world has been far, far worse.
David France’s How to Survive a Plague is the monumental tale of how disparate men and women banded together to bridge the chasm between continued life and certain death. It is a saga that is infuriating, terrifying, heartbreaking, and ultimately awe-inspiring, the rare moment of a book and an author fully meeting an occasion of history.
***
It’s hard to know where to start, for there are just too many things to say. I suppose an easy jumping-off point would be the book’s scope. How to Survive the Plague begins with an introduction in 2013, set at the funeral of activist Spencer Cox. Though he had made it through the worst days of the epidemic, Cox could not survive surviving, and had stopped taking his medications. France uses this mournful episode to introduce us to many of the characters we are about to follow, to remind us that HIV/AIDS still rages around the planet, and to show us the heavy toll on those who lived through the plague’s darkest days.
From there, How to Survive a Plague circles back to 1981, when a handful of gay men in New York City all presented with Kaposi’s Sarcoma, a normally-rare form of cancer. It ends – after over 500 pages of text – in 1996, when the first truly effective treatments began hitting the market.
***
Many books try to cover all the angles, presenting both the big picture from on high, and the intimate one from down low. But this is not as easy as it sounds. Once you start taking that elevator from the macro to the micro – and back up again – it is very easy to get off on the wrong floor, and wander into confusion’s apartment.
France’s genius is his ability to nimbly navigate the many different planes on which How to Survive a Plague operates. This is a work of journalism, history, science writing, activism, and memoir, and he somehow manages to integrate these very different elements into a remarkably seamless whole.
At certain times, France is looking down from above, to observe the bigger processes at work: the efforts of competing scientists; the foot-dragging by successive presidential administrations; the human cost of HIV/AIDS in terms of cold, impersonal numbers. At other times, he follows individuals, showing how they were impacted by the epidemic, and how they impacted it in turn. On occasion, France will insert himself into the narrative, adding his personal – often gut-wrenching – experiences.
As my mechanic often tells me, the more moving parts you have, the more points of failure that exist. Here, the execution is brilliant, satisfying both the head and the heart. I learned about the disease; I learned the relevant statistics; and I saw – through France’s haunting evocations – the faces of those affected.
***
France is a marvelous writer, and How to Survive a Plague has the transportive qualities of great fiction. In a book with numerous virtues, it is France’s beautiful characterizations that stand out.
How to Survive a Plague is brimming with unlikely heroes, men and women from vastly different walks of life, with vastly different conceptions on how to move forward. Sometimes they collaborate. Sometimes they collide. Far too often, they do not make it to the end, a potent reminder that despite the novelistic feel, this is very real.
There are too many unforgettable people to mention them all, though a few stand out. Early in the epidemic, we meet Dr. Joseph Sonnabend, whose practice centered on the treatment of venereal diseases for gay men. In this position, he was among the first to spot the outbreak of HIV/AIDS. There is Richard Berkowitz, a sex worker who – with Michael Callen – wrote How to Have Sex in an Epidemic: One Approach, which pioneered safe-sex practices. As France notes, this idea was initially controversial, given the battles fought by the community against laws outlawing homosexual activity. We also meet Peter Staley, a financial whiz – France takes the time to thoroughly describe his job at J.P. Morgan – who turned into one of the most insightful voices of the plague years.
The core of the book is the activists, especially those of ACT UP, who combined advanced medical research with the tactics of King and Gandhi to change public opinion, government opinion, and finally corporate opinion. But France’s stage is also big enough for allies such as philanthropist Mathilde Krim; conservative Admiral James Watkins, who took a faltering presidential commission and put it to real use; and chemist Iris Long, who assisted ACT UP in their efforts to find useful drugs.
Jesse Helms is also here, an uncomfortable reminder that Jesse Helms was once here. In a rare moment of levity, France describes how Staley – with an assist from David Geffen – managed to put a gigantic condom over Helms’s house.
***
How to Survive a Plague is nonfiction, with the extensive endnotes to prove it. However, it is not – strictly speaking – objective. Indeed, it’s not really possible with a project like this. France is man of many talents: an investigative journalist, war correspondent, author, and documentarian. He is also a gay man, who lived – and participated – in the events covered here. People he cared about and love died in front of him. As such, the emotional distance one might have when writing about the Peloponnesian War is not possible.
Still, for the most part, France strives to show the good and the bad, without dividing people into heroes and villains. Complicated figures – such as famed writer/lightning rod Larry Kramer, who wrote both The Normal Heart and a novel with an unprintable name – retain their complexity. ACT UP – as well as other organizations – are shown doing incredible work, but also retain their flaws. For example, France explores the disagreement over various attention-getting maneuvers, and how some of them – especially the ethically dubious decision to literally accuse hardworking scientists of murder – did more harm than good.
The only time France fails is in his animus-fueled coverage of Dr. Anthony Fauci. France despises Fauci for reasons he does not disclose, but are evident in the one-sided, borderline-cartoonish portrayal of an important and much-debated figure of the crisis. In France’s hands, Fauci can do no right. At one point, he lays thousands of deaths right at Fauci’s feet, as though he held the magic wand that could’ve waved everything away. Even when Fauci agrees with the activists, and does what they ask, France derides him for “surrendering,” denying Fauci the grace to change. These near-genocidal charges got my attention, but when I went outside the book for further research, I found a much more shaded image of Fauci’s role, including interviews with people such as Staley who lauded his efforts.
***
Everyone knows everyone is dying. On most days, this can be ignored as something that awaits in the distant future. For those who contracted HIV/AIDS during the darkest years of the epidemic, that rationalization disappeared. It was a death sentence with a strict, unpleasant timeline. With those circumstances, it would’ve been very easy – and understandable – to quit, and simply wait for the end. The people in this book – and many more like them, all over the world – refused to do that. They did not go quietly, and against all odds and obstacles, with little hope for success, pushed back the edge of the night.
- David France, How to Survive a Plague: The Story of How Activists and Scientists Tamed AIDS
First, a quick medical lesson: Human immunodeficiency virus (HIV) is the virus that causes acquired immunodeficiency syndrome (AIDS). AIDS is the last, most advanced stage of HIV, which is why they are discussed together as an awful, lethal pairing. The virus works by destroying CD4 T lymphocyte cells, which the body uses to fight infection. As CD4 cells disappear, a person with HIV loses the ability to defend themself against infections, illnesses, and cancers. So-called “opportunistic infections” – such as pneumocystis pneumonia – take advantage of a person’s weakened immunity, and kills them.
Today, HIV/AIDS is a manageable condition. It cannot be cured, but appropriate medications can make a viral load undetectable. This means no symptoms and no transmission. It also means that a person with HIV/AIDS can – again, in the right medical circumstances – live a normal life, dying with the virus, rather than from it.
This – which cannot be stressed enough – was not always the case.
There was a time, not that long ago, and well within living memory, in which HIV/AIDS was a death sentence of the most unappealable type, more certain than cancer, and horrifying in its degradations. Since the start of the HIV/AIDS epidemic in the 1980s, around 700,000 Americans have died of the disease. The death toll around the world has been far, far worse.
David France’s How to Survive a Plague is the monumental tale of how disparate men and women banded together to bridge the chasm between continued life and certain death. It is a saga that is infuriating, terrifying, heartbreaking, and ultimately awe-inspiring, the rare moment of a book and an author fully meeting an occasion of history.
***
It’s hard to know where to start, for there are just too many things to say. I suppose an easy jumping-off point would be the book’s scope. How to Survive the Plague begins with an introduction in 2013, set at the funeral of activist Spencer Cox. Though he had made it through the worst days of the epidemic, Cox could not survive surviving, and had stopped taking his medications. France uses this mournful episode to introduce us to many of the characters we are about to follow, to remind us that HIV/AIDS still rages around the planet, and to show us the heavy toll on those who lived through the plague’s darkest days.
From there, How to Survive a Plague circles back to 1981, when a handful of gay men in New York City all presented with Kaposi’s Sarcoma, a normally-rare form of cancer. It ends – after over 500 pages of text – in 1996, when the first truly effective treatments began hitting the market.
***
Many books try to cover all the angles, presenting both the big picture from on high, and the intimate one from down low. But this is not as easy as it sounds. Once you start taking that elevator from the macro to the micro – and back up again – it is very easy to get off on the wrong floor, and wander into confusion’s apartment.
France’s genius is his ability to nimbly navigate the many different planes on which How to Survive a Plague operates. This is a work of journalism, history, science writing, activism, and memoir, and he somehow manages to integrate these very different elements into a remarkably seamless whole.
At certain times, France is looking down from above, to observe the bigger processes at work: the efforts of competing scientists; the foot-dragging by successive presidential administrations; the human cost of HIV/AIDS in terms of cold, impersonal numbers. At other times, he follows individuals, showing how they were impacted by the epidemic, and how they impacted it in turn. On occasion, France will insert himself into the narrative, adding his personal – often gut-wrenching – experiences.
As my mechanic often tells me, the more moving parts you have, the more points of failure that exist. Here, the execution is brilliant, satisfying both the head and the heart. I learned about the disease; I learned the relevant statistics; and I saw – through France’s haunting evocations – the faces of those affected.
***
France is a marvelous writer, and How to Survive a Plague has the transportive qualities of great fiction. In a book with numerous virtues, it is France’s beautiful characterizations that stand out.
How to Survive a Plague is brimming with unlikely heroes, men and women from vastly different walks of life, with vastly different conceptions on how to move forward. Sometimes they collaborate. Sometimes they collide. Far too often, they do not make it to the end, a potent reminder that despite the novelistic feel, this is very real.
There are too many unforgettable people to mention them all, though a few stand out. Early in the epidemic, we meet Dr. Joseph Sonnabend, whose practice centered on the treatment of venereal diseases for gay men. In this position, he was among the first to spot the outbreak of HIV/AIDS. There is Richard Berkowitz, a sex worker who – with Michael Callen – wrote How to Have Sex in an Epidemic: One Approach, which pioneered safe-sex practices. As France notes, this idea was initially controversial, given the battles fought by the community against laws outlawing homosexual activity. We also meet Peter Staley, a financial whiz – France takes the time to thoroughly describe his job at J.P. Morgan – who turned into one of the most insightful voices of the plague years.
The core of the book is the activists, especially those of ACT UP, who combined advanced medical research with the tactics of King and Gandhi to change public opinion, government opinion, and finally corporate opinion. But France’s stage is also big enough for allies such as philanthropist Mathilde Krim; conservative Admiral James Watkins, who took a faltering presidential commission and put it to real use; and chemist Iris Long, who assisted ACT UP in their efforts to find useful drugs.
Jesse Helms is also here, an uncomfortable reminder that Jesse Helms was once here. In a rare moment of levity, France describes how Staley – with an assist from David Geffen – managed to put a gigantic condom over Helms’s house.
***
How to Survive a Plague is nonfiction, with the extensive endnotes to prove it. However, it is not – strictly speaking – objective. Indeed, it’s not really possible with a project like this. France is man of many talents: an investigative journalist, war correspondent, author, and documentarian. He is also a gay man, who lived – and participated – in the events covered here. People he cared about and love died in front of him. As such, the emotional distance one might have when writing about the Peloponnesian War is not possible.
Still, for the most part, France strives to show the good and the bad, without dividing people into heroes and villains. Complicated figures – such as famed writer/lightning rod Larry Kramer, who wrote both The Normal Heart and a novel with an unprintable name – retain their complexity. ACT UP – as well as other organizations – are shown doing incredible work, but also retain their flaws. For example, France explores the disagreement over various attention-getting maneuvers, and how some of them – especially the ethically dubious decision to literally accuse hardworking scientists of murder – did more harm than good.
The only time France fails is in his animus-fueled coverage of Dr. Anthony Fauci. France despises Fauci for reasons he does not disclose, but are evident in the one-sided, borderline-cartoonish portrayal of an important and much-debated figure of the crisis. In France’s hands, Fauci can do no right. At one point, he lays thousands of deaths right at Fauci’s feet, as though he held the magic wand that could’ve waved everything away. Even when Fauci agrees with the activists, and does what they ask, France derides him for “surrendering,” denying Fauci the grace to change. These near-genocidal charges got my attention, but when I went outside the book for further research, I found a much more shaded image of Fauci’s role, including interviews with people such as Staley who lauded his efforts.
***
Everyone knows everyone is dying. On most days, this can be ignored as something that awaits in the distant future. For those who contracted HIV/AIDS during the darkest years of the epidemic, that rationalization disappeared. It was a death sentence with a strict, unpleasant timeline. With those circumstances, it would’ve been very easy – and understandable – to quit, and simply wait for the end. The people in this book – and many more like them, all over the world – refused to do that. They did not go quietly, and against all odds and obstacles, with little hope for success, pushed back the edge of the night.
July 24, 2018
I was there. I worked for the National Association of People with AIDS as their development director from 92 to 97 then again in 2000. Previously I'd worked at The Human Rights Campaign Fund (now HRC). And the Band Played On was an excellent history of AIDS, activism and the federal gov. lack of response during the 80's.
How to Survive a Plague brought it all back to me. The ACT-UP demos, the kiss in at the American Family Association on Vermont Ave, in Wash. DC. Countless deaths in my office, and in my personal life. So many gone.
The author did an outstanding job of documenting the lives of the activists, (the majority of whom are dead now), the doctors, and the federal government's response up to the present day. An enormous undertaking. He's done the movement justice.
How to Survive a Plague brought it all back to me. The ACT-UP demos, the kiss in at the American Family Association on Vermont Ave, in Wash. DC. Countless deaths in my office, and in my personal life. So many gone.
The author did an outstanding job of documenting the lives of the activists, (the majority of whom are dead now), the doctors, and the federal government's response up to the present day. An enormous undertaking. He's done the movement justice.
January 11, 2018
I’m on a non-fiction binge, and this was a great one. Quite appropriate and interesting to have read straight after Laurence Rees’ The Holocaust. There are a number of parallels, such as the principle of survivor’s guilt, and how the experience of being so heavily marginalised becomes unforgettable no matter what progress is made after the fact. Reading these two books, it’s just so difficult to take in. Did that really happen? I have an immense and bizarre hunger for how the world was once horrible…
Before I go any further, I need to say: I’ve hung out with three gay people in the last five years. One is me, the other is my husband, the third is some friend who came to visit—and would not stop talking about himself! OMG in one week I learned every film he’d ever liked, every celebrity he thought was cute, every misfortune that ever befell him. So tedious. He was as close a window into the gay world as I had, and it wasn’t pretty. Though I’m inclined to think he was just “boring person: gay variety” rather than “all other gays are boring.” (It’s like that mathematical cow joke.) MY POINT IS I admit on that basis I’m not qualified to comment on the gay community. Having acknowledged and relieved myself of authority, I want to share some things I’ve been thinking about.
This book is a riveting account. As is the documentary of the same name, which I would advise watching first. The book is a behind-the-scenes expansion upon the documentary, and weaves in the author’s personal account of the crisis—essential documentation. There hasn’t been a book like this in a long time, and it’s a masterful and powerful narrative. Miraculous, almost, and I can believe it took at least the 5 years since the documentary came out to compose. I can also recommend And The Band Played On by Randy Shilts which, while clocking in at like 900 pages, reads like a breeze—I’d guess because the story is driven by absolute fury and urgency. The HBO film of Kramer’s play The Normal Heart is great too, as is a documentary on Kramer himself, Larry Kramer in Love and Anger.
This book covers many of the same bases as And The Band Played On. One interesting addition, which I’d remembered from Shilts’ book, is the retribution of “Patient Zero”, Gaetan Dugas. (It turns out it was “Patient O”, for Outside-of-California—which became misinterpreted.) Portrayed in Shilts’ work as some villainous disease-spreader, France claims there’s no such evidence of this. I wonder… There were some quite damning quotes in Shilts’ book if I recall correctly. Were they just fabricated? Does the retribution come from a desire not to portray any gay person in a negative light? Well, I can understand that. In the early 80s, with same-sex intercourse only recently decriminalised, suddenly “gay cancer” came along and doctors advised that gay men refrain from sex. Coupled with AIDS’ initial name, Gay-related immune deficiency (GRID), it’s easy to see why the early interpretation of AIDS seemed like some new form of oppression. Leading to unfortunate and risky “rebellions.”
As seems to be the case, with drug addictions and suicides following the success of mitigating AIDS deaths, having as much purpose as an AIDS activist can be addictive. We all (should) measure our lives against the yardstick of self. After helping to save 6,000,000+ lives, how are you going to wake up and top that tomorrow? With gays largely accepted into the mainstream, and the end of AIDS-as-death-sentence, a lot of that “opportunity to create meaning” has dissipated. Of a friend’s apparent suicide after the activism, France says, “As was said about the great Holocaust writer Primo Levi after he plunged to his death, [my friend] had never left the camps. Maybe none of us did.” To AIDS activists, being treated the way they were at the time, and considering what would’ve happened had they not done the work that they did, is an unforgettable horror.
I’m fascinated by purpose, meaning, and what is required of the individual. With today’s onslaught of news, it’s very easy to get priorities ass backwards.
The most influence you have in the world today is in the room with you. It’s with the people with whom you are emotionally connected, who know you and take you seriously, and whom you can inspire and keep alive. Then it’s with local communities, then it’s with the globe. To the side, you can get people thinking with your art, your writing or YouTube videos, your protests etc—and that might reach more numerous crowds but your influence is much smaller in that regard. You just don’t take up the same “space” in the lives of distant people, and you never will. I don’t think.
So, people should look after: themselves, those around them, do a good job at work, and more if possible. That to me justifies anyone’s existence. If you’ve got spare capacity, by all means have at it. If you find it difficult getting out of bed in the morning, cool: focus on that and nothing more.
This story is about humans acting in crisis mode. I don’t think average people are supposed to live their life this intensely, as admirable as it is. It’s amazing to see what humans can achieve when they’re up against it, though we’d of course rather that tests like this never came along.
As I’m sure I’ve mentioned in another review, Andrew Sullivan mentioned in a Big Think video that if everyone just came out, there’d be no more homophobia. Everyone would know a gay person they liked. I’d like to believe that. There was enough evidence in Rees’ The Holocaust that that would work: “I didn’t know you were a Jew! Well, obviously you’re not the type of Jew we’re talking about when we say we want Jews out of the country.” That’s realisation Step One, and Step Two is, “Oh, ALL Jews are like the Jews we like.” I also recently read Christian Picciolini’s book, White American Youth: My Descent into America's Most Violent Hate Movement—and How I Got Out. In it, he mentioned that once he opened a record shop and met more of the marginalised groups he supposedly hated, it became impossible to hate them. They were just normal people.
So, I like to think that we are activists every day if we just tell the truth, act with integrity and be ourselves as much as possible. In this way we are active ambassadors for who we are, what we represent and what we want in the world. Protests and activism comes into play in instances when/where the personal approach fails.
The best answer, and one that must have been borne out of this same confusion—How are the next generation of gay people supposed to think about the past? How should they live the lives so many fought and died for? How should they pay tribute?—comes from David Levithan’s excellent (and super short) book, Two Boys Kissing: “We do not start as dust. We do not end as dust. We make more than dust. That's all we ask of you. Make more than dust.”
The novel is geniusly voiced by (if I interpreted correctly!) the collective ghost of every gay person who died of AIDS. That quote is their answer to the next generation: Please don’t kill yourself if you’ve been bullied, because we did fight to keep you alive and recognised after all. But don’t sit about feeling bad about that. Do recognise the historical context of your own life, but also, go lie on the beach with some friends, go dancing, laugh with abandon. Do it mostly because you can, but also because we can’t. Think of us sometimes.
There’s a Louis CK (oh dear) joke about how gay people have parades as if it’s so great being gay and looks like fun, and woe is he for no straight parades. Is that a use of the idiot savant? He knows why the parades, right? They’re clearly a reaction to how ashamed society has made LGBT+ people in the past. It wasn’t once assumed that being gay was anything to be proud about. It’s still not considered acceptable in so many countries. In the past it was more likely for someone to recommend a psychiatric institution. The parades are part retribution for that. (They’re also, if you’re lucky enough to attend one, just a beautiful celebration of life. And if you live in a place where that’s all they need to be, well, that’s extra extra beautiful!)
I wonder if it would ever have needed to be a community if gay people were instantly accepted. It has been brought together as a community by oppression. Just because the oppression might tail off, and all that “appears to be left” is the joyful communion, it doesn’t mean that we should forget the horror to which that communion was first a reaction. Gay bars existed because there once weren’t other places where gay people could be themselves. (MP Johnson’s Nails is a great book about the ashamed compartmentalisation of true self. She struggled prior to understanding her identity as a transgender woman. Part of that phase was to book a hotel room far from home in which she could get her nails done, wear a dress and go out on the town.) It’s true that there still exist—might always exist—homophobic movements, like Sweden’s Nordic Resistance Movement, for example (whose propaganda I pass every day on the way to work.) And that I do see way more gay couples holding hands around Pride—meaning most aren’t comfortable to do it year-round. But it seems like background noise compared to what once was. Maybe that’s a dangerous way to look at it though. I honestly don’t know.
I mention the following because it seems relevant and because I’ve become a huge fan of RuPaul’s Drag Race. It has also suckered in EVERYONE Juan and I have shown it to. I recommend you go watch some right now ;)
For something to appear frivolous and fun, it has to disguise or ignore the darkness that might’ve brought it about. Drag seems very much in that spirit. It looks like fun and has been elevated, thanks to figures like RuPaul, to a legitimate and beautiful form of artistry. But I’d wager it began as an embodiment of everything homophobes thought about gay men: that they were effeminate, sissy, trivial people. Therefore the reaction was to produce an effeminate, sissy, camp and seemingly trivial art form, so cleverly projected upon the very body of the scorned person as a form of armour. And for sure, watch ten minutes of RuPaul’s Drag Race and you’ll hear confessions of getting kicked out the house, abandoned at a bus stop, attending parents’ funerals at a formative age. It’s a reaction to suffering, a positive reappropriation. Trixie Mattel is a great example, “Trixie” being the derogatory word her father used to describe his son’s effeminate behaviour.
In that respect, I don’t personally need a gay community. The goal for me was always assimilation—or at least, since I’ve been alive that’s been an option for me, for which I’m thankful. (Not so much assimilation as, “Everyone please just leave me alone” ahaha.) RuPaul doesn’t like that idea and doesn’t want to fit into society—but I think being born in a time when homosexuality was taboo lends itself to that rebellion. I would guess, as outlined above, it’s a form of addiction as much as it may be an identity.
Juan and I have a friend who grew up in a homophobic community, though has since rejected a lot of the stigmas he grew up with. Which is admirable. Great. Let’s move on. I don’t think it has quite clicked with him that being gay is normal to us. He mentions the fact that we’re gay at least once every time we see him. Which is against “the goal” of this for me: “I’m you, you’re me. We’re not different. So cut it out!” If it’s not clear why it’s a little odd, I’ll try and explain.
How many times do you think about your knees in a given day? I’d wager not at all, because they function properly, you’ve always lived with them, and they don’t specifically affect your day. (You may not incidentally be proud of them, because—well, you can’t imagine a life without having been born with them, for example. In fact, no such life exists. There’s only this one. With you and your knees.) Then imagine if someone said, “Hey! It’s my friend with the knees!” You’d be like, “A weird thing to have honed in on, though not inaccurate… Lots of people have knees. Does he remember me for my knees? Am I unaware of how I come off to others or does he just have some unresolved fascination with knees? Knees is a funny word…”
We were talking about something recently and I said to him, “I don’t walk around feeling thankful that no one wants to punch me in the face, because they never should’ve. That prejudice is stupid and I don’t think anybody has the right to say ‘You’re welcome’ to me just for being civil. They always should’ve wanted to be.”
It’s my husband that he befriended first, who is, I of course think, an absolute treasure. Plus, we’ve been married almost 7 years now, much longer than anyone we know, which means we have a lot of insight into how to maintain a long-term relationship. Far more than our straight friends—or “friends”, if you will. To be around us is to be in the presence of true love, to remember it exists in the world. I share my soul with that beautiful man and I don’t care if anyone thinks our relationship is less legitimate than that of a heterosexual couple. I mean, I don’t really care what anyone thinks of me at all (or do my best not to), which I would advise for anyone of any orientation or etcetera.
But that’s the thing. I hope we inspire just for being us. And I hope you do too. In a perfect world, that’s all we’d need to do.
Now onwards to Solzhenitsyn’s Gulag Archipelago!
Before I go any further, I need to say: I’ve hung out with three gay people in the last five years. One is me, the other is my husband, the third is some friend who came to visit—and would not stop talking about himself! OMG in one week I learned every film he’d ever liked, every celebrity he thought was cute, every misfortune that ever befell him. So tedious. He was as close a window into the gay world as I had, and it wasn’t pretty. Though I’m inclined to think he was just “boring person: gay variety” rather than “all other gays are boring.” (It’s like that mathematical cow joke.) MY POINT IS I admit on that basis I’m not qualified to comment on the gay community. Having acknowledged and relieved myself of authority, I want to share some things I’ve been thinking about.
This book is a riveting account. As is the documentary of the same name, which I would advise watching first. The book is a behind-the-scenes expansion upon the documentary, and weaves in the author’s personal account of the crisis—essential documentation. There hasn’t been a book like this in a long time, and it’s a masterful and powerful narrative. Miraculous, almost, and I can believe it took at least the 5 years since the documentary came out to compose. I can also recommend And The Band Played On by Randy Shilts which, while clocking in at like 900 pages, reads like a breeze—I’d guess because the story is driven by absolute fury and urgency. The HBO film of Kramer’s play The Normal Heart is great too, as is a documentary on Kramer himself, Larry Kramer in Love and Anger.
This book covers many of the same bases as And The Band Played On. One interesting addition, which I’d remembered from Shilts’ book, is the retribution of “Patient Zero”, Gaetan Dugas. (It turns out it was “Patient O”, for Outside-of-California—which became misinterpreted.) Portrayed in Shilts’ work as some villainous disease-spreader, France claims there’s no such evidence of this. I wonder… There were some quite damning quotes in Shilts’ book if I recall correctly. Were they just fabricated? Does the retribution come from a desire not to portray any gay person in a negative light? Well, I can understand that. In the early 80s, with same-sex intercourse only recently decriminalised, suddenly “gay cancer” came along and doctors advised that gay men refrain from sex. Coupled with AIDS’ initial name, Gay-related immune deficiency (GRID), it’s easy to see why the early interpretation of AIDS seemed like some new form of oppression. Leading to unfortunate and risky “rebellions.”
As seems to be the case, with drug addictions and suicides following the success of mitigating AIDS deaths, having as much purpose as an AIDS activist can be addictive. We all (should) measure our lives against the yardstick of self. After helping to save 6,000,000+ lives, how are you going to wake up and top that tomorrow? With gays largely accepted into the mainstream, and the end of AIDS-as-death-sentence, a lot of that “opportunity to create meaning” has dissipated. Of a friend’s apparent suicide after the activism, France says, “As was said about the great Holocaust writer Primo Levi after he plunged to his death, [my friend] had never left the camps. Maybe none of us did.” To AIDS activists, being treated the way they were at the time, and considering what would’ve happened had they not done the work that they did, is an unforgettable horror.
I’m fascinated by purpose, meaning, and what is required of the individual. With today’s onslaught of news, it’s very easy to get priorities ass backwards.
The most influence you have in the world today is in the room with you. It’s with the people with whom you are emotionally connected, who know you and take you seriously, and whom you can inspire and keep alive. Then it’s with local communities, then it’s with the globe. To the side, you can get people thinking with your art, your writing or YouTube videos, your protests etc—and that might reach more numerous crowds but your influence is much smaller in that regard. You just don’t take up the same “space” in the lives of distant people, and you never will. I don’t think.
So, people should look after: themselves, those around them, do a good job at work, and more if possible. That to me justifies anyone’s existence. If you’ve got spare capacity, by all means have at it. If you find it difficult getting out of bed in the morning, cool: focus on that and nothing more.
This story is about humans acting in crisis mode. I don’t think average people are supposed to live their life this intensely, as admirable as it is. It’s amazing to see what humans can achieve when they’re up against it, though we’d of course rather that tests like this never came along.
As I’m sure I’ve mentioned in another review, Andrew Sullivan mentioned in a Big Think video that if everyone just came out, there’d be no more homophobia. Everyone would know a gay person they liked. I’d like to believe that. There was enough evidence in Rees’ The Holocaust that that would work: “I didn’t know you were a Jew! Well, obviously you’re not the type of Jew we’re talking about when we say we want Jews out of the country.” That’s realisation Step One, and Step Two is, “Oh, ALL Jews are like the Jews we like.” I also recently read Christian Picciolini’s book, White American Youth: My Descent into America's Most Violent Hate Movement—and How I Got Out. In it, he mentioned that once he opened a record shop and met more of the marginalised groups he supposedly hated, it became impossible to hate them. They were just normal people.
So, I like to think that we are activists every day if we just tell the truth, act with integrity and be ourselves as much as possible. In this way we are active ambassadors for who we are, what we represent and what we want in the world. Protests and activism comes into play in instances when/where the personal approach fails.
The best answer, and one that must have been borne out of this same confusion—How are the next generation of gay people supposed to think about the past? How should they live the lives so many fought and died for? How should they pay tribute?—comes from David Levithan’s excellent (and super short) book, Two Boys Kissing: “We do not start as dust. We do not end as dust. We make more than dust. That's all we ask of you. Make more than dust.”
The novel is geniusly voiced by (if I interpreted correctly!) the collective ghost of every gay person who died of AIDS. That quote is their answer to the next generation: Please don’t kill yourself if you’ve been bullied, because we did fight to keep you alive and recognised after all. But don’t sit about feeling bad about that. Do recognise the historical context of your own life, but also, go lie on the beach with some friends, go dancing, laugh with abandon. Do it mostly because you can, but also because we can’t. Think of us sometimes.
There’s a Louis CK (oh dear) joke about how gay people have parades as if it’s so great being gay and looks like fun, and woe is he for no straight parades. Is that a use of the idiot savant? He knows why the parades, right? They’re clearly a reaction to how ashamed society has made LGBT+ people in the past. It wasn’t once assumed that being gay was anything to be proud about. It’s still not considered acceptable in so many countries. In the past it was more likely for someone to recommend a psychiatric institution. The parades are part retribution for that. (They’re also, if you’re lucky enough to attend one, just a beautiful celebration of life. And if you live in a place where that’s all they need to be, well, that’s extra extra beautiful!)
I wonder if it would ever have needed to be a community if gay people were instantly accepted. It has been brought together as a community by oppression. Just because the oppression might tail off, and all that “appears to be left” is the joyful communion, it doesn’t mean that we should forget the horror to which that communion was first a reaction. Gay bars existed because there once weren’t other places where gay people could be themselves. (MP Johnson’s Nails is a great book about the ashamed compartmentalisation of true self. She struggled prior to understanding her identity as a transgender woman. Part of that phase was to book a hotel room far from home in which she could get her nails done, wear a dress and go out on the town.) It’s true that there still exist—might always exist—homophobic movements, like Sweden’s Nordic Resistance Movement, for example (whose propaganda I pass every day on the way to work.) And that I do see way more gay couples holding hands around Pride—meaning most aren’t comfortable to do it year-round. But it seems like background noise compared to what once was. Maybe that’s a dangerous way to look at it though. I honestly don’t know.
I mention the following because it seems relevant and because I’ve become a huge fan of RuPaul’s Drag Race. It has also suckered in EVERYONE Juan and I have shown it to. I recommend you go watch some right now ;)
For something to appear frivolous and fun, it has to disguise or ignore the darkness that might’ve brought it about. Drag seems very much in that spirit. It looks like fun and has been elevated, thanks to figures like RuPaul, to a legitimate and beautiful form of artistry. But I’d wager it began as an embodiment of everything homophobes thought about gay men: that they were effeminate, sissy, trivial people. Therefore the reaction was to produce an effeminate, sissy, camp and seemingly trivial art form, so cleverly projected upon the very body of the scorned person as a form of armour. And for sure, watch ten minutes of RuPaul’s Drag Race and you’ll hear confessions of getting kicked out the house, abandoned at a bus stop, attending parents’ funerals at a formative age. It’s a reaction to suffering, a positive reappropriation. Trixie Mattel is a great example, “Trixie” being the derogatory word her father used to describe his son’s effeminate behaviour.
In that respect, I don’t personally need a gay community. The goal for me was always assimilation—or at least, since I’ve been alive that’s been an option for me, for which I’m thankful. (Not so much assimilation as, “Everyone please just leave me alone” ahaha.) RuPaul doesn’t like that idea and doesn’t want to fit into society—but I think being born in a time when homosexuality was taboo lends itself to that rebellion. I would guess, as outlined above, it’s a form of addiction as much as it may be an identity.
Juan and I have a friend who grew up in a homophobic community, though has since rejected a lot of the stigmas he grew up with. Which is admirable. Great. Let’s move on. I don’t think it has quite clicked with him that being gay is normal to us. He mentions the fact that we’re gay at least once every time we see him. Which is against “the goal” of this for me: “I’m you, you’re me. We’re not different. So cut it out!” If it’s not clear why it’s a little odd, I’ll try and explain.
How many times do you think about your knees in a given day? I’d wager not at all, because they function properly, you’ve always lived with them, and they don’t specifically affect your day. (You may not incidentally be proud of them, because—well, you can’t imagine a life without having been born with them, for example. In fact, no such life exists. There’s only this one. With you and your knees.) Then imagine if someone said, “Hey! It’s my friend with the knees!” You’d be like, “A weird thing to have honed in on, though not inaccurate… Lots of people have knees. Does he remember me for my knees? Am I unaware of how I come off to others or does he just have some unresolved fascination with knees? Knees is a funny word…”
We were talking about something recently and I said to him, “I don’t walk around feeling thankful that no one wants to punch me in the face, because they never should’ve. That prejudice is stupid and I don’t think anybody has the right to say ‘You’re welcome’ to me just for being civil. They always should’ve wanted to be.”
It’s my husband that he befriended first, who is, I of course think, an absolute treasure. Plus, we’ve been married almost 7 years now, much longer than anyone we know, which means we have a lot of insight into how to maintain a long-term relationship. Far more than our straight friends—or “friends”, if you will. To be around us is to be in the presence of true love, to remember it exists in the world. I share my soul with that beautiful man and I don’t care if anyone thinks our relationship is less legitimate than that of a heterosexual couple. I mean, I don’t really care what anyone thinks of me at all (or do my best not to), which I would advise for anyone of any orientation or etcetera.
But that’s the thing. I hope we inspire just for being us. And I hope you do too. In a perfect world, that’s all we’d need to do.
Now onwards to Solzhenitsyn’s Gulag Archipelago!
April 22, 2017
(3.5) Spanning from the summer of 1981, when the New York Times first broke the story about a rare cancer observed in homosexuals, to 1996, when protease inhibitors came onto the market and offered HIV sufferers a new lease on life, How to Survive a Plague is a comprehensive history of the AIDS crisis. Especially in its early chapters, it reads like a fascinating medical mystery – though we already know the answers, the book skillfully captures the ignorance and terror that reigned for so many years as people sought to understand what Gay-Related Immune Deficiency (GRID, the original name for AIDS) was and how it was transmitted.
As a journalist and a gay man, David France was right in the thick of the crisis when he moved to Manhattan in 1981. He lost friends and lovers to AIDS, and had his own health scares, too – once, on assignment in war-torn Central America, he developed what he thought was a Kaposi’s sarcoma lesion but turned out to be a sign of amoebic infection.
Throughout the 1980s the number of HIV cases roughly doubled each year; media coverage was intense but often alarmist. Undertakers refused to deal with AIDS victims, and Jerry Falwell and his ilk spoke of a gay conspiracy taking over America. Far too slowly, research advanced to cope with the crisis. France gives details of the medical trials and presidential commissions that kept AIDS at the forefront of the national conscience, generally thanks to patient advocacy groups like ACT UP (AIDS Coalition to Unleash Power) and PWA (People with AIDS – more proactive terminology than victims or patients).
The book reminds me most of Sheri Fink’s Five Days in Memorial, another social history with a vast scope and a large cast of characters; here there are about 25 doctors, researchers and activists, many of them based in New York City, who keep recurring. For instance, there’s Joe Sonnabend, an infectious diseases expert who specialized in treating gay men for venereal diseases; Larry Kramer, who wrote an angry novel about fellow homosexuals yet tried to lead the response; and Richard Berkowitz, a former sex worker who co-wrote How to Have Sex in an Epidemic, a safe sex guide that encouraged a surge in condom use.
I rather underestimated the reading load the Wellcome Book Prize shortlist would create for me; I ended up getting bogged down in this 500+-page book’s level of detail and only succeeded in skimming it. I think that for someone without a personal stake in the story of AIDS, watching the 2012 documentary film of the same title that spawned the book would be an easier way to absorb copious information and keep track of all the individuals and organizations involved.
Nonetheless, I can certainly affirm the importance of a landmark book like this one. When I surveyed critical opinion on it for Bookmarks magazine, I noticed many comparisons to Randy Shilts’s 1987 And the Band Played On, but while that book was written in medias res and deliberately vilified a French-Canadian flight attendant named Gaëtan Dugas who was linked with multiple AIDS cases in North America, How to Survive a Plague benefits from two decades of hindsight and reflects a mixture of journalistic objectivity and personal grief.
It’s sobering to remember the scale of the AIDS epidemic: 100,000 Americans had died of it by 1991. As one HIV-positive ACT UP activist cried out to Bill Clinton, then a Democratic candidate, at a campaign event, “Bill, we’re dying of neglect!” France’s book really brings home how traumatic these years were for a whole country, but especially for homosexuals. He describes the relief of knowing that effective medical treatment was finally in the pipeline, but also the lingering effects of shame, bitterness, and fear.
France has written a definitive history of the AIDS crisis in the United States. It’s a cautionary tale that must not be forgotten. While not among my personal favorites from the Wellcome Prize shortlist, it would be a worthy winner.
Originally published with images on my blog, Bookish Beck.
As a journalist and a gay man, David France was right in the thick of the crisis when he moved to Manhattan in 1981. He lost friends and lovers to AIDS, and had his own health scares, too – once, on assignment in war-torn Central America, he developed what he thought was a Kaposi’s sarcoma lesion but turned out to be a sign of amoebic infection.
Throughout the 1980s the number of HIV cases roughly doubled each year; media coverage was intense but often alarmist. Undertakers refused to deal with AIDS victims, and Jerry Falwell and his ilk spoke of a gay conspiracy taking over America. Far too slowly, research advanced to cope with the crisis. France gives details of the medical trials and presidential commissions that kept AIDS at the forefront of the national conscience, generally thanks to patient advocacy groups like ACT UP (AIDS Coalition to Unleash Power) and PWA (People with AIDS – more proactive terminology than victims or patients).
The book reminds me most of Sheri Fink’s Five Days in Memorial, another social history with a vast scope and a large cast of characters; here there are about 25 doctors, researchers and activists, many of them based in New York City, who keep recurring. For instance, there’s Joe Sonnabend, an infectious diseases expert who specialized in treating gay men for venereal diseases; Larry Kramer, who wrote an angry novel about fellow homosexuals yet tried to lead the response; and Richard Berkowitz, a former sex worker who co-wrote How to Have Sex in an Epidemic, a safe sex guide that encouraged a surge in condom use.
I rather underestimated the reading load the Wellcome Book Prize shortlist would create for me; I ended up getting bogged down in this 500+-page book’s level of detail and only succeeded in skimming it. I think that for someone without a personal stake in the story of AIDS, watching the 2012 documentary film of the same title that spawned the book would be an easier way to absorb copious information and keep track of all the individuals and organizations involved.
Nonetheless, I can certainly affirm the importance of a landmark book like this one. When I surveyed critical opinion on it for Bookmarks magazine, I noticed many comparisons to Randy Shilts’s 1987 And the Band Played On, but while that book was written in medias res and deliberately vilified a French-Canadian flight attendant named Gaëtan Dugas who was linked with multiple AIDS cases in North America, How to Survive a Plague benefits from two decades of hindsight and reflects a mixture of journalistic objectivity and personal grief.
It’s sobering to remember the scale of the AIDS epidemic: 100,000 Americans had died of it by 1991. As one HIV-positive ACT UP activist cried out to Bill Clinton, then a Democratic candidate, at a campaign event, “Bill, we’re dying of neglect!” France’s book really brings home how traumatic these years were for a whole country, but especially for homosexuals. He describes the relief of knowing that effective medical treatment was finally in the pipeline, but also the lingering effects of shame, bitterness, and fear.
Nobody left those years uncorrupted by what they’d witnessed, not only the mass deaths—100,000 lost in New York City alone, snatched from tightly drawn social circles—but also the foul truths that a microscopic virus had revealed about American culture: politicians who welcomed the plague as proof of God’s will, doctors who refused the victims medical care, clergymen and often even parents themselves who withheld all but a shiver of grief. Such betrayal would be impossible to forget in the subsequent years.
France has written a definitive history of the AIDS crisis in the United States. It’s a cautionary tale that must not be forgotten. While not among my personal favorites from the Wellcome Prize shortlist, it would be a worthy winner.
Originally published with images on my blog, Bookish Beck.
July 29, 2020
Reading about a devastating plague while living in another might seem counterintuitive and I admit it wasn't exactly easy but I'm glad I did. David France can turn dry scientific talk riveting and I got some help from Rory O'Malley who had me ugly crying on more than one occasion. Sometimes I felt like my heart was in a vise, I got ragey and impotent over bureaucratic incompetence, one that not only hasn't changed but has perhaps gotten worse, and had a couple of bitter laughs noticing many of the same actors that are still on the scene. The most prominent is perhaps Dr. Fauci who doesn't precisely come off smelling of roses, proof that if you hang on long enough time can iron out even the most stubborn wrinkles.
All things considered this is an uplifting read in the sense that it shows how determined, persistent, and organized smart people can bring about change. The PWA (People With Aids), ACT-UP, and later TAG got knocked down innumerable times, lost more members of their community than could be properly be mourned, and yet continued what must have seemed a Sisyphean effort to save their lives. All of this in the Ginger Rogers role, doing everything Fred Astaire did but backwards and in high heels by which I mean living with naked, accepted, active, ugly, brutal homophobia not only from society but from our government, established religion and their own families while dying. No proper diagnosis, ignorant of the cause, without any effective treatment or hope and, in most cases, getting little sympathy or adequate care from the medical community.
The names of Mark Harrington, Peter Staley, David Barr, Garance Franke-Ruta, Bill Bahlman, Gregg Gonsalves, Larry Kramer and so many others need to be engraved in our collective memories. However IMO, and the author agrees, two invaluable and perhaps unsung pioneers were Michael Callen and Richard Berkowitz. Neither of them, very young men at the time, had any science or medical background but once they were diagnosed, early on in the Plague Years, and having been brought together by a beneficent fate got to work trying to find a way of keeping love and intimacy in male gay relationships. As Callen observed: "AIDS casts its shadow over gayness itself," he said. "Loving another man is seen by many as an act of madness. Gay men are viewed as the Flying Wallendas of the eighties, performing death-defying high-wire acts merely by loving, while the 'general population' below turns away in horror." It's almost no surprise that Callen, a tender musician with a high falsetto, and Berkowitz, "a Jewish boy from New Jersey who spoke to his mother every day, was a professional sex worker." who went by the professional name of Vinnie in his specialty as a Master within the BDSM community, were the ones to come up with a SAFE SEX MANUAL or guidance. The language of BDSM and music are precise & mathematical and won't steer you wrong.
And then there's this quote from Watkins, one of the NIH directors about the situation: "We're not ready for this disease. This country is simply not ready for an emergency medical epidemic of this type, and we have to do better because we don't know what the next mutation [of the virus] is going to be." This was late 1980s early 1990s!!! We've learned nothing.
There's a companion documentary also directed by the author but it centers on the fight with Big Pharma, the NIH, NIAID, FDA, and the U.S.Government so Callen & Berkowitz don't appear as that wasn't what they focused on. I'd still recommend it.
All things considered this is an uplifting read in the sense that it shows how determined, persistent, and organized smart people can bring about change. The PWA (People With Aids), ACT-UP, and later TAG got knocked down innumerable times, lost more members of their community than could be properly be mourned, and yet continued what must have seemed a Sisyphean effort to save their lives. All of this in the Ginger Rogers role, doing everything Fred Astaire did but backwards and in high heels by which I mean living with naked, accepted, active, ugly, brutal homophobia not only from society but from our government, established religion and their own families while dying. No proper diagnosis, ignorant of the cause, without any effective treatment or hope and, in most cases, getting little sympathy or adequate care from the medical community.
The names of Mark Harrington, Peter Staley, David Barr, Garance Franke-Ruta, Bill Bahlman, Gregg Gonsalves, Larry Kramer and so many others need to be engraved in our collective memories. However IMO, and the author agrees, two invaluable and perhaps unsung pioneers were Michael Callen and Richard Berkowitz. Neither of them, very young men at the time, had any science or medical background but once they were diagnosed, early on in the Plague Years, and having been brought together by a beneficent fate got to work trying to find a way of keeping love and intimacy in male gay relationships. As Callen observed: "AIDS casts its shadow over gayness itself," he said. "Loving another man is seen by many as an act of madness. Gay men are viewed as the Flying Wallendas of the eighties, performing death-defying high-wire acts merely by loving, while the 'general population' below turns away in horror." It's almost no surprise that Callen, a tender musician with a high falsetto, and Berkowitz, "a Jewish boy from New Jersey who spoke to his mother every day, was a professional sex worker." who went by the professional name of Vinnie in his specialty as a Master within the BDSM community, were the ones to come up with a SAFE SEX MANUAL or guidance. The language of BDSM and music are precise & mathematical and won't steer you wrong.
And then there's this quote from Watkins, one of the NIH directors about the situation: "We're not ready for this disease. This country is simply not ready for an emergency medical epidemic of this type, and we have to do better because we don't know what the next mutation [of the virus] is going to be." This was late 1980s early 1990s!!! We've learned nothing.
There's a companion documentary also directed by the author but it centers on the fight with Big Pharma, the NIH, NIAID, FDA, and the U.S.Government so Callen & Berkowitz don't appear as that wasn't what they focused on. I'd still recommend it.
August 4, 2016
An insider's look at the pivotal moment in American history when AIDS became an epidemic. Written in an easy to read narrative style, this book is equal parts medical, and history that includes lots of sleuthing by average people who desperately want to save their lives, and the lives of their loved ones from AIDS, despite being stonewalled by the government. These ordinary citizens are collectively the Erin Brockovichs of the AIDS movement. If you loved "The Immortal Life of Henrietta Lacks" you'll love this book.
Note: I received a free review copy of this book and was not compensated for it.
Note: I received a free review copy of this book and was not compensated for it.
December 5, 2016
For the first 15 or so years of the AIDS epidemic, the disease was a virtual death sentence. Journalist David France, in his excellent work, "How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS", examines the years 1980 to 1996 to show how "citizens" - in this case, mostly gay activists - put government officials, drug companies, and scientists on the line to come up with drugs and other therapies to control the disease.
David France focuses his book on the work being done in New York City. He had moved to the city from small-town Michigan, finding the freedom to come out. He became a journalist and both recorded and participated in the various movements he writes about. He also writes about the toll that AIDS tool during those early years, when the gay community lost thousands of young men. And many of the men lost were friends and lovers of David France, who recounts the deep personal toll AIDS took on him and others.
France's book is not a short and easy read. He goes behind the scenes and names names, and scolds those who stood in the way of the search for a cure for AIDS. Of course, the first eight years - the Ronald Reagan years - Reagan did very, very little to help, not even uttering the word "AIDS" until well into his second term. France's description of a task force - finally put together under Reagan - is almost amusing in the way he describes the grotesque, mostly anti-gay members of the group. However, those task members are no worse than the drug company officials - particularly Burroughs Wellcome - whose greed and proprietary interests set back manufacture and distribution of drugs that might have helped.
David France also writes about the dissension within the gay community over the causes of the disease. But, if there was fighting, there was also working together. Those parts were the wonder of the book; people - gay, straight,old, young, men, women - who came together to fight their common enemies and work for the greater good.
Many years ago I read Randy Shilts's "And the Band Played On", which was written in the early 1990's, before "drug cocktails" have made AIDS into a manageable illness for most. It was an epic book, much like David France's book is.
David France focuses his book on the work being done in New York City. He had moved to the city from small-town Michigan, finding the freedom to come out. He became a journalist and both recorded and participated in the various movements he writes about. He also writes about the toll that AIDS tool during those early years, when the gay community lost thousands of young men. And many of the men lost were friends and lovers of David France, who recounts the deep personal toll AIDS took on him and others.
France's book is not a short and easy read. He goes behind the scenes and names names, and scolds those who stood in the way of the search for a cure for AIDS. Of course, the first eight years - the Ronald Reagan years - Reagan did very, very little to help, not even uttering the word "AIDS" until well into his second term. France's description of a task force - finally put together under Reagan - is almost amusing in the way he describes the grotesque, mostly anti-gay members of the group. However, those task members are no worse than the drug company officials - particularly Burroughs Wellcome - whose greed and proprietary interests set back manufacture and distribution of drugs that might have helped.
David France also writes about the dissension within the gay community over the causes of the disease. But, if there was fighting, there was also working together. Those parts were the wonder of the book; people - gay, straight,old, young, men, women - who came together to fight their common enemies and work for the greater good.
Many years ago I read Randy Shilts's "And the Band Played On", which was written in the early 1990's, before "drug cocktails" have made AIDS into a manageable illness for most. It was an epic book, much like David France's book is.
February 6, 2017
An insider's comprehensive and eye opening account of the citizens who changed and saved lives throughout the AIDS plague. How to Survive a Plague is informative, emotional, and unique. Not only was I in awe of the people who repeatedly worked to change the course of history, but the author's clear dedication was inspiring. Everyone should read this book, now more than ever.
If ever protest feels like a hopeless task, this book is proof that it isn't. Ignored by the majority - confronted with hate - millions of people are now alive because of the people and founding groups that never quit, even when many would (and many did). David France does a stunning job of accurately sharing what it took. This book is an amazing accomplishment and I urge everyone to read it.
If ever protest feels like a hopeless task, this book is proof that it isn't. Ignored by the majority - confronted with hate - millions of people are now alive because of the people and founding groups that never quit, even when many would (and many did). David France does a stunning job of accurately sharing what it took. This book is an amazing accomplishment and I urge everyone to read it.
January 29, 2019
An enthralling history that does justice to one of the most revolutionary, unlikely, under-appreciated movements in recent American life. The ACT UP (AIDS Coalition to Unleash Power) movement changed public health and LGBTQ life forever; when governments and pharmaceutical companies ignored the outbreak of the AIDS crisis (“who cares about a disease that only kills gay people?”), queer people got organized and worked to save themselves.
David France is a tender, authoritative guide through the crisis. As a gay reporter in NYC for the duration of the crisis, France was in the thick of everything and draws extensively from his contemporaneous recordings and notes. He captures the personalities, unravels the factions, and distills the senses of urgency and dread that permeated the times. He also chooses to share his own stories, loves, and losses in the text, weaving them into the larger fabric of the crisis.
France chronicles the renaissance of brilliant direct action activism that eventually pressured the US government (under Reagan! and Bush!) to invest money into AIDS research. From blocking traffic and building occupations to more imaginative and transgressive actions (like wrapping US Senator Jesse Helms’ house in a giant condom, or throwing the remains of loved ones over the fence and onto the White House Lawn), the depth of strategy and variety of tactics used within ACT UP is truly breathtaking. It was a shockingly democratic, leaderless movement brimming with creativity, collaboration, and strife. Beyond the direct actions, part of the story of ACT UP is also the story of how some people with AIDS who had no formal training in the sciences became the world’s foremost experts on HIV virology, cellular biology, and pharmaceuticals, and also drew from lesbian feminist health frameworks to mainstream the idea of “safe sex.” Former actors, interior designers, wage laborers, and other non-science professionals were forced to learn everything themselves since the medical research establishment would not. These ordinary people succeeded — and later designed the medical trials that would lead to the medications that keep HIV+ people alive all over the world by the millions.
I am so deeply moved by this history. While this review so far reads as a breathless celebration of ACT UP and their radical world-building, no reader should approach this book lightly. There were passages that left me inconsolable. The story of the AIDS crisis, while in some dimensions the remarkable story of a resilient people fighting against all odds, is by most dimensions nothing more than the story of incalculable loss. Between 1987 and 1996, more than 324,000 Americans died in the AIDS crisis (more than five times the number of Americans killed in the Vietnam War). Gay men were hit particularly hard; estimates suggest that more than 1 in 10 gay American men died in the AIDS crisis, with the local percentage rising to be much higher within major cities. Many of those men died alone. Reviled. Many had no one to collect their bodies. While reading, and after, I wept for them. France gives readers an appreciation of this horrific statistical scale, but the text is also filled with dozens of individual deaths, each honored and told in detailed tenderness — even when there was no tenderness in death. These acts of remembering are sacred. The book is filled with mourning.
I am really overwhelmed by this read. In a constructive way. I am so deeply grateful for the queer people who came before me, who fought to save my life and make this world possible for me just as much as for themselves. I am seething at the genocidal, vocal pleasure with which the political right intentionally let a generation of LGBTQ people die; I am enraged by the fatal indifference of centrist liberals who risked nothing at the expense of other peoples’ lives; I am livid at the ceaseless indignities visited upon LGBTQ people. I am stricken with grief and made aware of the chasm that precedes me. And hereon I will remember.
David France is a tender, authoritative guide through the crisis. As a gay reporter in NYC for the duration of the crisis, France was in the thick of everything and draws extensively from his contemporaneous recordings and notes. He captures the personalities, unravels the factions, and distills the senses of urgency and dread that permeated the times. He also chooses to share his own stories, loves, and losses in the text, weaving them into the larger fabric of the crisis.
France chronicles the renaissance of brilliant direct action activism that eventually pressured the US government (under Reagan! and Bush!) to invest money into AIDS research. From blocking traffic and building occupations to more imaginative and transgressive actions (like wrapping US Senator Jesse Helms’ house in a giant condom, or throwing the remains of loved ones over the fence and onto the White House Lawn), the depth of strategy and variety of tactics used within ACT UP is truly breathtaking. It was a shockingly democratic, leaderless movement brimming with creativity, collaboration, and strife. Beyond the direct actions, part of the story of ACT UP is also the story of how some people with AIDS who had no formal training in the sciences became the world’s foremost experts on HIV virology, cellular biology, and pharmaceuticals, and also drew from lesbian feminist health frameworks to mainstream the idea of “safe sex.” Former actors, interior designers, wage laborers, and other non-science professionals were forced to learn everything themselves since the medical research establishment would not. These ordinary people succeeded — and later designed the medical trials that would lead to the medications that keep HIV+ people alive all over the world by the millions.
I am so deeply moved by this history. While this review so far reads as a breathless celebration of ACT UP and their radical world-building, no reader should approach this book lightly. There were passages that left me inconsolable. The story of the AIDS crisis, while in some dimensions the remarkable story of a resilient people fighting against all odds, is by most dimensions nothing more than the story of incalculable loss. Between 1987 and 1996, more than 324,000 Americans died in the AIDS crisis (more than five times the number of Americans killed in the Vietnam War). Gay men were hit particularly hard; estimates suggest that more than 1 in 10 gay American men died in the AIDS crisis, with the local percentage rising to be much higher within major cities. Many of those men died alone. Reviled. Many had no one to collect their bodies. While reading, and after, I wept for them. France gives readers an appreciation of this horrific statistical scale, but the text is also filled with dozens of individual deaths, each honored and told in detailed tenderness — even when there was no tenderness in death. These acts of remembering are sacred. The book is filled with mourning.
I am really overwhelmed by this read. In a constructive way. I am so deeply grateful for the queer people who came before me, who fought to save my life and make this world possible for me just as much as for themselves. I am seething at the genocidal, vocal pleasure with which the political right intentionally let a generation of LGBTQ people die; I am enraged by the fatal indifference of centrist liberals who risked nothing at the expense of other peoples’ lives; I am livid at the ceaseless indignities visited upon LGBTQ people. I am stricken with grief and made aware of the chasm that precedes me. And hereon I will remember.
March 8, 2017
This is an extraordinary book, beautifully written. It will knock the wind out of you at times (I was finishing it over lunch yesterday and started crying in Chipotle...). For those of us that experienced much of this story first hand, it is a detailed, smart and completely readable account of a harrowing time in our recent history. The amazing array of characters will infuriate you, make you laugh and break your heart.
Read this book to see how every day citizens of this country brought about lifesaving changes to slow and somewhat manage the AIDS crisis. Millions of people are alive today because of what they accomplished.
Read this book to see how every day citizens of this country brought about lifesaving changes to slow and somewhat manage the AIDS crisis. Millions of people are alive today because of what they accomplished.
July 7, 2019
France shows how terrifying and isolating an experience it must have been to grow up gay in America during the 70s and 80s. Using his own experience he illustrates the terror and stigma surrounding homosexuality and this was before the appearance of AIDS. We have to remember that up to the 70s homosexuality was classified in the “Diagnostic and Statistical Manual of Mental Disorders” as a sociopathic personality disturbance and ECT was being administered to try and cure it.
The “New York Times” comes in for a share amount of criticism here. Initially it chose not to list the partners of deceased victims of AIDS. It’s hard to fathom in today’s comparatively tolerant climate, but in 80s NYC you had a situation where, “It took two years and almost six hundred dead before 'New York Times' put a story on the front page.” One terminally ill patient recalls in a TV interview that one day whilst in hospital and overheard two nurse aides sort of laughing, “I wonder how long the faggot in 208 is going to last.” This was in 1983. They had a situation where not only were all the major news outlets largely ignoring it or mis-reporting the facts and the mayor refusing to discuss it, but you also had most hospitals initially refused to give patients a bed or room, where most doctors refused to treat them and ambulance drivers were refusing to pick up AIDS patients, and almost every undertakers refused to accept the bodies. We are not talking about medieval Europe or the Middle East, this was NYC in the 1980s, a city that loves to tell the world that it’s the greatest in the world.
We see how the sudden emergence of PCP (a particularly nasty form of pneumonia) KS (Kaposi’s Sarcoma) in patients started fears of a so called “gay cancer” and how so many had to suffer for so long before Big Pharma came up with AZT, though apparently over half of the victims couldn’t take it as it was so toxic. Leading figures like NYC Mayor Ed Koch and President Reagan went years before even mentioning AIDS in public by name, which clearly only added to the problem. There are many shocking examples given to illustrate how AIDS was being viewed, but surely the most revealing has to be, when Reagan, who had yet to acknowledge it, but went out of his way to make a speech for the victims of a flood and landslide in Central America, saying, “The American people join me in sending sympathy to those injured, their families and the families of those who lost their lives.” To add insult he donated $25 Million in foreign aid, more than triple set aside to fight AIDS in his own country in the same year. Quarantine orders from the CDC for any foreign homosexual attempting to enter the country, they were questioned in special detention centres, where if they admitted to being gay they could be deported.
France weaves his own experiences into the history, at one point he describes working during his 90 day trial period at Rupert Murdoch’s “New York Post”. He is taken aside and told by the investigations editor, “'Found out you’re gay,' he said through the grin of a poor winner. I looked away. On his desk I saw clippings of my work in the “Native”. 'We don’t need infiltrators here, bloke, not homosexuals in the investigations department.'"
In spite of largely being funded by the tax payer, Burroughs Wellcome ensured that AZT was the highest price drug in the US and the highest one in history at that point. According to one estimate they would bank $172 million-$206 million in revenues a year in the US alone. In 1985 when NBC chose to show “An Early Frost.” the first film to deal with AIDS. Even though some 34 million tuned in to watch, the network lost an estimated half a million dollars in advertising revenue as corporations fled the time slot. Having the likes of William F. Buckley referring to it as “Avenging angel” and “retribution for a repulsive vice.” Demanding that its sufferers have their flesh branded as warnings to the world. This did little to help and neither did the likes of Republican governor, Jesse Helms of North Carolina, whose policies wouldn’t have been out of place in Nazi Germany.
It got so bad that at one stage you had thousands of tax paying Americans having to pay for their own flights to Paris, France in a desperate bid to try and access superior drugs. On the run up for Koch’s third election campaign for NYC mayor, the stats were as follows, “In the thirty months of plague, a time in which 1.340 New Yorkers were diagnosed and 773 were already gone, Koch had spent just $24,500 on AIDS. In the same time frame, San Francisco had allocated and spent more than $4 million on care and prevention. That gap was even more striking considering that the city by the Bay had just 12 % of the nation’s case load compared to New York City’s 42%.”
The catholic church had contracts totalling around $76 million. Church leaders made it clear that if forced to hire gays they would shut down the whole operation, leaving tens of thousands of at risk New Yorkers in a lurch. They insisted that they weren’t bigoted, Archbishop of NYC, John O Connor insisting that, “Plain common sense.” to restrict some sensitive jobs to heterosexuals. “It would be totally inappropriate, in my judgement, to hire a blatant homosexual and put him in as a house parent to a group of young, troubled teenage boys.” It's the age old problem where senior members of religious groups, get so drunk on power, that they confuse their dogma with scientific expertise, O Connor who repeatedly spoke out against condoms, spreading ignorance and lies insisting that they allowed as many pregnancies and infections as they blocked.
This book could maybe have been more stringently edited, there are certainly times when France loses his way a bit, getting bogged down in the minutiae, which it fully understandable since this was a deeply personal account that explored the lives and suffering of many of his close friends and many people he loved. But more importantly what France has done here is raise awareness and really tried to push it into the mainstream. He shames the America, which loves to show to the world how free, democratic and tolerant it is. He consistently destroys this myth clearly demonstrating that it was far removed from this idea it loves to portray itself as.
France shows us that for well over a decade Big Pharma, senior religious figures, the vast majority of the mainstream media, president Reagan, Bush Snr and almost every senior person they appointed, greatly failed millions and as result of their deliberate avoidance, personal agendas and not least their ignorant, cowardly, homophobic propaganda, caused or led to the unnecessary suffering and deaths of millions and all because of their sexual orientation. This is a significant book that draws attention to one of the darkest chapters in modern American history and shames them for their shallow prejudices and shameless ignorance and for that alone France should be applauded.
The “New York Times” comes in for a share amount of criticism here. Initially it chose not to list the partners of deceased victims of AIDS. It’s hard to fathom in today’s comparatively tolerant climate, but in 80s NYC you had a situation where, “It took two years and almost six hundred dead before 'New York Times' put a story on the front page.” One terminally ill patient recalls in a TV interview that one day whilst in hospital and overheard two nurse aides sort of laughing, “I wonder how long the faggot in 208 is going to last.” This was in 1983. They had a situation where not only were all the major news outlets largely ignoring it or mis-reporting the facts and the mayor refusing to discuss it, but you also had most hospitals initially refused to give patients a bed or room, where most doctors refused to treat them and ambulance drivers were refusing to pick up AIDS patients, and almost every undertakers refused to accept the bodies. We are not talking about medieval Europe or the Middle East, this was NYC in the 1980s, a city that loves to tell the world that it’s the greatest in the world.
We see how the sudden emergence of PCP (a particularly nasty form of pneumonia) KS (Kaposi’s Sarcoma) in patients started fears of a so called “gay cancer” and how so many had to suffer for so long before Big Pharma came up with AZT, though apparently over half of the victims couldn’t take it as it was so toxic. Leading figures like NYC Mayor Ed Koch and President Reagan went years before even mentioning AIDS in public by name, which clearly only added to the problem. There are many shocking examples given to illustrate how AIDS was being viewed, but surely the most revealing has to be, when Reagan, who had yet to acknowledge it, but went out of his way to make a speech for the victims of a flood and landslide in Central America, saying, “The American people join me in sending sympathy to those injured, their families and the families of those who lost their lives.” To add insult he donated $25 Million in foreign aid, more than triple set aside to fight AIDS in his own country in the same year. Quarantine orders from the CDC for any foreign homosexual attempting to enter the country, they were questioned in special detention centres, where if they admitted to being gay they could be deported.
France weaves his own experiences into the history, at one point he describes working during his 90 day trial period at Rupert Murdoch’s “New York Post”. He is taken aside and told by the investigations editor, “'Found out you’re gay,' he said through the grin of a poor winner. I looked away. On his desk I saw clippings of my work in the “Native”. 'We don’t need infiltrators here, bloke, not homosexuals in the investigations department.'"
In spite of largely being funded by the tax payer, Burroughs Wellcome ensured that AZT was the highest price drug in the US and the highest one in history at that point. According to one estimate they would bank $172 million-$206 million in revenues a year in the US alone. In 1985 when NBC chose to show “An Early Frost.” the first film to deal with AIDS. Even though some 34 million tuned in to watch, the network lost an estimated half a million dollars in advertising revenue as corporations fled the time slot. Having the likes of William F. Buckley referring to it as “Avenging angel” and “retribution for a repulsive vice.” Demanding that its sufferers have their flesh branded as warnings to the world. This did little to help and neither did the likes of Republican governor, Jesse Helms of North Carolina, whose policies wouldn’t have been out of place in Nazi Germany.
It got so bad that at one stage you had thousands of tax paying Americans having to pay for their own flights to Paris, France in a desperate bid to try and access superior drugs. On the run up for Koch’s third election campaign for NYC mayor, the stats were as follows, “In the thirty months of plague, a time in which 1.340 New Yorkers were diagnosed and 773 were already gone, Koch had spent just $24,500 on AIDS. In the same time frame, San Francisco had allocated and spent more than $4 million on care and prevention. That gap was even more striking considering that the city by the Bay had just 12 % of the nation’s case load compared to New York City’s 42%.”
The catholic church had contracts totalling around $76 million. Church leaders made it clear that if forced to hire gays they would shut down the whole operation, leaving tens of thousands of at risk New Yorkers in a lurch. They insisted that they weren’t bigoted, Archbishop of NYC, John O Connor insisting that, “Plain common sense.” to restrict some sensitive jobs to heterosexuals. “It would be totally inappropriate, in my judgement, to hire a blatant homosexual and put him in as a house parent to a group of young, troubled teenage boys.” It's the age old problem where senior members of religious groups, get so drunk on power, that they confuse their dogma with scientific expertise, O Connor who repeatedly spoke out against condoms, spreading ignorance and lies insisting that they allowed as many pregnancies and infections as they blocked.
This book could maybe have been more stringently edited, there are certainly times when France loses his way a bit, getting bogged down in the minutiae, which it fully understandable since this was a deeply personal account that explored the lives and suffering of many of his close friends and many people he loved. But more importantly what France has done here is raise awareness and really tried to push it into the mainstream. He shames the America, which loves to show to the world how free, democratic and tolerant it is. He consistently destroys this myth clearly demonstrating that it was far removed from this idea it loves to portray itself as.
France shows us that for well over a decade Big Pharma, senior religious figures, the vast majority of the mainstream media, president Reagan, Bush Snr and almost every senior person they appointed, greatly failed millions and as result of their deliberate avoidance, personal agendas and not least their ignorant, cowardly, homophobic propaganda, caused or led to the unnecessary suffering and deaths of millions and all because of their sexual orientation. This is a significant book that draws attention to one of the darkest chapters in modern American history and shames them for their shallow prejudices and shameless ignorance and for that alone France should be applauded.
February 3, 2017
Where Randy Shilts drew the intricate outline of the history of the AIDS crisis in his 1987 classic, AND THE BAND PLAYED ON, David France has sculpted a three-dimensional image of the herculean task of convincing the NIH and the pharmaceutical companies to research, test, and manufacture drugs that would effectively corral HIV into a disease that could be managed and survived.
Unlike Shilts, who maintained a strictly detached, if dramatic, journalistic tone as he related the story like a mystery novel whose outcome, in 1987, we were not quite as assured of, France was there in the thick of it and he periodically positions himself among the characters he is following. This does not detract from his well-researched and more or less dispassionate narrative, but it does serve to put you down right in the geography of the Village in NYC or the campus of NIH in the DC area. This is helpful because there are so many characters, and these (mostly) gay men worked so tirelessly as political activists, public health advocates, and support for their dying loved ones that it would all seem unreal if the author were not reminding us from time to time that he was there and he saw it happen.
There were also women who played a significant role and he gives them their due, but most likely someone else will come along to tell their side of it in depth at some point.
One interesting element for me was the fact that the musician and political architect of the "safer-sex" movement, Michael Callen, is one of the main characters of this story. Any gay person in the 1990s who attended rallies and fundraisers, even in the Washington DC area rather than Callen's home base, New York City, would know him first and foremost as the amazing voice in the gay a capella doo wop group, The Flirtations, as well as as a solo songwriter of stunningly iconic songs of gay liberation, such as "How to Have Sex in an Epidemic (without getting caught up in polemic,)" as well as "Love Don't Need a Reason," and the unforgettable, "Living in Wartime," all featured on his first solo album, Purple Heart.
The book does not focus on his music much at all. Rather, it follows his efforts to convince gay men at the start of the epidemic to refrain from unsafe practices. Initially, he thinks this means celibacy. Then he has his inspiration (with the help of his battle brother, Richard Berkowitz): certain sexual practices are safe; others are not. Due to their efforts, the condom became the primary weapon against HIV, and their influence helped gay men "put the love back into sex," as they put it.
Aside from the interesting personalities, my lasting takeaway from reading France's book is to realize how these men and women drove themselves, ran themselves ragged, while simultaneously dealing with severe illness, grief over lost partners, and economic hardship endured mostly without a security net.
Like the Ancient Greeks (I believe), who are said to have gone to battle in pairs with their same-sex lovers to incite them to protect each other fiercely, the same ethic appears to apply to this account of the early soldiers who battled a White House administration who ignored the epidemic, a New York mayor too concerned with his own image to provide leadership, and the greater apathy of society who were not terribly bothered about AIDS until it felled Rock Hudson, a perceived "straight white male" like them.
If you were an adult during the 80s and 90s, this book will remind you where you were while all this was happening, and you will most likely be affected by this heroic (a word often overused, but apt in this case) effort which did, ultimately achieve the goal of making effective drugs available against the "plague" of HIV.
Unlike Shilts, who maintained a strictly detached, if dramatic, journalistic tone as he related the story like a mystery novel whose outcome, in 1987, we were not quite as assured of, France was there in the thick of it and he periodically positions himself among the characters he is following. This does not detract from his well-researched and more or less dispassionate narrative, but it does serve to put you down right in the geography of the Village in NYC or the campus of NIH in the DC area. This is helpful because there are so many characters, and these (mostly) gay men worked so tirelessly as political activists, public health advocates, and support for their dying loved ones that it would all seem unreal if the author were not reminding us from time to time that he was there and he saw it happen.
There were also women who played a significant role and he gives them their due, but most likely someone else will come along to tell their side of it in depth at some point.
One interesting element for me was the fact that the musician and political architect of the "safer-sex" movement, Michael Callen, is one of the main characters of this story. Any gay person in the 1990s who attended rallies and fundraisers, even in the Washington DC area rather than Callen's home base, New York City, would know him first and foremost as the amazing voice in the gay a capella doo wop group, The Flirtations, as well as as a solo songwriter of stunningly iconic songs of gay liberation, such as "How to Have Sex in an Epidemic (without getting caught up in polemic,)" as well as "Love Don't Need a Reason," and the unforgettable, "Living in Wartime," all featured on his first solo album, Purple Heart.
The book does not focus on his music much at all. Rather, it follows his efforts to convince gay men at the start of the epidemic to refrain from unsafe practices. Initially, he thinks this means celibacy. Then he has his inspiration (with the help of his battle brother, Richard Berkowitz): certain sexual practices are safe; others are not. Due to their efforts, the condom became the primary weapon against HIV, and their influence helped gay men "put the love back into sex," as they put it.
Aside from the interesting personalities, my lasting takeaway from reading France's book is to realize how these men and women drove themselves, ran themselves ragged, while simultaneously dealing with severe illness, grief over lost partners, and economic hardship endured mostly without a security net.
Like the Ancient Greeks (I believe), who are said to have gone to battle in pairs with their same-sex lovers to incite them to protect each other fiercely, the same ethic appears to apply to this account of the early soldiers who battled a White House administration who ignored the epidemic, a New York mayor too concerned with his own image to provide leadership, and the greater apathy of society who were not terribly bothered about AIDS until it felled Rock Hudson, a perceived "straight white male" like them.
If you were an adult during the 80s and 90s, this book will remind you where you were while all this was happening, and you will most likely be affected by this heroic (a word often overused, but apt in this case) effort which did, ultimately achieve the goal of making effective drugs available against the "plague" of HIV.
December 5, 2016
Growing up in the 80s I really had no awareness of the spread of Aids in America. One of my first memories of hearing about Aids was in science class at school where my teacher Mr Marble told everyone that it’s the gays who were responsible for spreading this disease. It was only during my teenage years in the 90s when I came out and befriended other gay people that I became more knowledgeable about the virus. It’s a sad fact that some of the people I was closest to in my younger years are now HIV+. With an estimated 35 million people having died from Aids and another 37 million people currently living with it, this is something which affects everyone but particularly people in the gay community. I was aware that for many years there was a huge stigma attached to it and I saw the documentary by the same name as this book, but only now having read David France’s masterful nonfiction book “How to Survive a Plague” do I fully comprehend what a courageous few activists and scientists did to help educate the public, change the policies of the government and pharmaceutical industry and bring together an afflicted community overrun by fear.
Read my full review of How to Survive a Plague by David France on LonesomeReader
Read my full review of How to Survive a Plague by David France on LonesomeReader
June 14, 2019
“In countless ways, survival, unexpected as it was, proved as hard to adjust to as the plague itself.”
March 5, 2017
AIDS was supposed to be the next pandemic, A disease that would take out 1 in 4 of the population. So far this virus has claimed around 40 million victims and it is thought that there are around 37 million still carrying the HIV or full blown AIDS virus at present. These are huge numbers. When it surfaced in the early 1980’s in America no one knew anything about it. It was passed from individual to individual through sexual contact and once it had entered into the gay community it spread rapidly. No one knew how to treat the symptoms or even if it was curable. Most people in America, in particular, those of a right wing persuasion could not be described as ‘sympathetic’ of the New York or any other gay community. This was even before men started to start to succumb to this unknown illness, initially thought to be some form of cancer, which was fast becoming an epidemic. It was a huge struggle for the gay community to even gain acceptance a lot of the time, this unknown virus was seen by some to be some sort of punishment. The problem was that this virus was decimating people.
David France brings us this insider’s view from the gay community on the characters that fought for recognition of their rights through the group ACT UP and for the fight that they had for resources for finding out just what this illness was and if it could be cured. This book is not the easiest to read, it is very dense, long and incredibly detailed. However, because of France’s perspective from within the community that suffered the most by reading this, you will gain an insider's perspective on the devastation that was wreaked on the gay community in the early 1980s. He lost partners and many close friends and associates to the virus and this made him do what he could do best, write. He describes the pretty despicable action by the American team of scientists undertaking research after the French team at the Institut Pasteur discovered the HIV-1 virus, and how Burroughs Wellcome developed AZT; supposedly the drug that would help those suffering. Problem was, it didn’t work. They made a fortune and still, people died. In their thousands.
Thankfully modern drugs mean that the disease is manageable, but this book is a reminder of a time that should not be forgotten.
David France brings us this insider’s view from the gay community on the characters that fought for recognition of their rights through the group ACT UP and for the fight that they had for resources for finding out just what this illness was and if it could be cured. This book is not the easiest to read, it is very dense, long and incredibly detailed. However, because of France’s perspective from within the community that suffered the most by reading this, you will gain an insider's perspective on the devastation that was wreaked on the gay community in the early 1980s. He lost partners and many close friends and associates to the virus and this made him do what he could do best, write. He describes the pretty despicable action by the American team of scientists undertaking research after the French team at the Institut Pasteur discovered the HIV-1 virus, and how Burroughs Wellcome developed AZT; supposedly the drug that would help those suffering. Problem was, it didn’t work. They made a fortune and still, people died. In their thousands.
Thankfully modern drugs mean that the disease is manageable, but this book is a reminder of a time that should not be forgotten.
July 15, 2023
I do not think I have the words to express how I feel after setting this book closed. I am quite literally alive today because of the activists who are at the center of this history.
This is the most important book I have ever read.
France has given us the names and stories of the people who risked everything to save their community from dying. All while most of them were in turn, dying. France has said to us, here are your heroes.
I feel a deep sense of responsibility in learning about this dark time in the gay community. I feel a sense of longing and love for everyone who fought and lived and everyone who fought and died, so that I and so many others can live a long and full life despite a diagnosis.
Despite my emotional response to this, even setting that aside, this is an incredibly well researched and detailed account of the AIDS crisis. While this does mostly focus on what was happening in NY, as that is where France lived and experienced the crisis, the amount of information, science, people and events surrounding the entire crisis is remarkable. I thought I had a good idea of what the AIDS epidemic was, but this book showed me there was so much more I didn’t know.
Here France has given the reader not only an emotional inside view of the activism, the science and the politics of the plague, but also a thoroughly researched and written history. It’s extensive and educational.
If you are trying to find a history for this specific topic, this should be on the top of the list.
I’m so grateful I found this book and I feel changed by reading it.
This is the most important book I have ever read.
France has given us the names and stories of the people who risked everything to save their community from dying. All while most of them were in turn, dying. France has said to us, here are your heroes.
I feel a deep sense of responsibility in learning about this dark time in the gay community. I feel a sense of longing and love for everyone who fought and lived and everyone who fought and died, so that I and so many others can live a long and full life despite a diagnosis.
Despite my emotional response to this, even setting that aside, this is an incredibly well researched and detailed account of the AIDS crisis. While this does mostly focus on what was happening in NY, as that is where France lived and experienced the crisis, the amount of information, science, people and events surrounding the entire crisis is remarkable. I thought I had a good idea of what the AIDS epidemic was, but this book showed me there was so much more I didn’t know.
Here France has given the reader not only an emotional inside view of the activism, the science and the politics of the plague, but also a thoroughly researched and written history. It’s extensive and educational.
If you are trying to find a history for this specific topic, this should be on the top of the list.
I’m so grateful I found this book and I feel changed by reading it.
May 24, 2018
I've just finished this and I'm sat here feeling a lot of things; I'm not sure how to describe this book but I will try anyway. it's not a review as much as my immediate thoughts and reactions.
Mostly I feel a bone-deep exhaustion at this fucking repetitive story: people are dead and dying because they are not considered people by other people. It's as frustratingly simple as that and it's the same thing every single time.
Then I feel anger. Anger not only that it took 11 godforsaken years for something to be done; but also anger that I was never told, by anybody anywhere that that is how long it took.
I've been thinking a lot recently about queer history and how it is passed down. This book hammered home once again that there is a gaping void amongst younger queers' knowledge where the AIDS crisis ought to be; and with it the gaping void of communication between generations.
Our history and culture often isn't passed down by our parents, our family, or our immediate surroundings. We cannot absorb it passively because it often isn't there until we are (young) adults. AIDS caused a generational trauma that none of us know how to navigate because we have barely anything or anyone to reach back to.
I don't know what to do about it, but I certainly will not forget the little bit of history i have just read in this book. that's all I've got for now.
Mostly I feel a bone-deep exhaustion at this fucking repetitive story: people are dead and dying because they are not considered people by other people. It's as frustratingly simple as that and it's the same thing every single time.
Then I feel anger. Anger not only that it took 11 godforsaken years for something to be done; but also anger that I was never told, by anybody anywhere that that is how long it took.
I've been thinking a lot recently about queer history and how it is passed down. This book hammered home once again that there is a gaping void amongst younger queers' knowledge where the AIDS crisis ought to be; and with it the gaping void of communication between generations.
Our history and culture often isn't passed down by our parents, our family, or our immediate surroundings. We cannot absorb it passively because it often isn't there until we are (young) adults. AIDS caused a generational trauma that none of us know how to navigate because we have barely anything or anyone to reach back to.
I don't know what to do about it, but I certainly will not forget the little bit of history i have just read in this book. that's all I've got for now.
August 23, 2021
I attempted to compile my thoughts on this long and detailed read into a video review: https://youtu.be/izNcivRlpAo
November 20, 2024
This is so good and so sad. This does an excellent job intertwining personal stories with historical political ones. I genuinely love this book and I think it’s really important. It should be mandatory reading for queer people in America who aren’t old enough to remember the AIDS crisis. This is such an essential part of our history. 4.6 stars
December 8, 2016
My review for the Chicago Tribune:
http://www.sandiegouniontribune.com/c...
Everybody knows that the size of a book does not guarantee its quality, yet there's still something thrilling about a book of a certain heft; a door-stopper-size tome speaks silently to a certain degree of ambition, completeness and necessity.
David France's riveting and comprehensive "How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS" purports, accurately, to be the definitive account of the successful struggle to halt the AIDS epidemic. Its 640 pages are packed with scientific, medical and social history, offering the reader a simultaneously intimate and sweeping understanding of the crisis from its earliest onset through the mid-1990s, when "the number of commercially available protease inhibitors" gave patients life-saving options, and beyond to the era in which survivor's guilt troubled many of the movement's former activists.
His award-winning documentary film of the same name was released in 2012. Here as there, France's skills as an investigative reporter are on impressive display. The notes alone take up 79 pages. Early on, he reminds the reader that the global AIDS pandemic has entered its fourth decade, and that by the early 2010s, "the body count was as high as forty million, which is nearly twice the devastation of the bubonic plague."
The toll in the U.S. "was 658,507 dead by the end of 2012 — an approximate figure despite the ring of precision" because of how "many people were declared dead from other causes in order to spare the relatives from stigma or because doctors mistook the symptoms."
Yet amid this wealth of sources and data, France never lets the reader forget the human scale of the crisis. Sixteen pages of glossy inserts present poignant photographs of activists, teams of scientists, panels from the AIDS memorial quilt, and reproductions of posters and pages from plague journals kept by those living — and dying — in the epidemic.
He opens the first chapter with his own arrival in 1978 as a young gay man in New York City, "for an internship at the United Nations and a chance to explore Christopher Street, the mountaintop of gay life," followed by his permanent move to Manhattan in June 1981. His timing, as he notes, was less than fortuitous. For "just two weeks after unpacking, on the Friday of the long July 4 weekend, The New York Times carried the first news of the plague." The fact that the Times ran the story on Page 20 on a holiday weekend, as well as the headline itself — "Rare Cancer Seen in 41 Homosexuals" — speak to the chaos of misunderstanding and prejudice that the community would have to combat in order to save themselves.
In rich detail and with a fine texture that benefits from his insider position, France charts the disease's spread as well as the heroic and flawed human efforts to contain it. Grippingly narrative and action-packed, the book astutely characterizes such key figures as Dr. Joe Sonnabend, one of the first doctors to sound the alarm when he noticed the shockingly high incidence of Kaposi's sarcoma in gay men, and the controversial author Larry Kramer, who "found the sexual Olympics" in the gay community "unnerving" and "was Jane Austen in Erica Jong's world," but who was one of the first to act, writing in the New York Native, that "In the past, we have often been a divided community; I hope we can all get together on this emergency, undivided, cohesively, and with all the numbers we in so many ways possess."
France has done no less than preserve the complicated legacy of a time, a place and a group of marginalized individuals who found themselves forced to fight "the foul truths that a microscopic virus had revealed about American culture: politicians who welcomed the plague as proof of God's will, doctors who refused the victims medical care, clergyman and often even parents themselves who withheld all but a shiver of grief."
"How to Survive a Plague" stands as a remarkably written and highly relevant record of what angry, invested citizens can come together to achieve, and a moving and instructive testament to one community's refusal — in the face of ignorance, hatred and death — to be silenced or to give up.
http://www.sandiegouniontribune.com/c...
Everybody knows that the size of a book does not guarantee its quality, yet there's still something thrilling about a book of a certain heft; a door-stopper-size tome speaks silently to a certain degree of ambition, completeness and necessity.
David France's riveting and comprehensive "How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS" purports, accurately, to be the definitive account of the successful struggle to halt the AIDS epidemic. Its 640 pages are packed with scientific, medical and social history, offering the reader a simultaneously intimate and sweeping understanding of the crisis from its earliest onset through the mid-1990s, when "the number of commercially available protease inhibitors" gave patients life-saving options, and beyond to the era in which survivor's guilt troubled many of the movement's former activists.
His award-winning documentary film of the same name was released in 2012. Here as there, France's skills as an investigative reporter are on impressive display. The notes alone take up 79 pages. Early on, he reminds the reader that the global AIDS pandemic has entered its fourth decade, and that by the early 2010s, "the body count was as high as forty million, which is nearly twice the devastation of the bubonic plague."
The toll in the U.S. "was 658,507 dead by the end of 2012 — an approximate figure despite the ring of precision" because of how "many people were declared dead from other causes in order to spare the relatives from stigma or because doctors mistook the symptoms."
Yet amid this wealth of sources and data, France never lets the reader forget the human scale of the crisis. Sixteen pages of glossy inserts present poignant photographs of activists, teams of scientists, panels from the AIDS memorial quilt, and reproductions of posters and pages from plague journals kept by those living — and dying — in the epidemic.
He opens the first chapter with his own arrival in 1978 as a young gay man in New York City, "for an internship at the United Nations and a chance to explore Christopher Street, the mountaintop of gay life," followed by his permanent move to Manhattan in June 1981. His timing, as he notes, was less than fortuitous. For "just two weeks after unpacking, on the Friday of the long July 4 weekend, The New York Times carried the first news of the plague." The fact that the Times ran the story on Page 20 on a holiday weekend, as well as the headline itself — "Rare Cancer Seen in 41 Homosexuals" — speak to the chaos of misunderstanding and prejudice that the community would have to combat in order to save themselves.
In rich detail and with a fine texture that benefits from his insider position, France charts the disease's spread as well as the heroic and flawed human efforts to contain it. Grippingly narrative and action-packed, the book astutely characterizes such key figures as Dr. Joe Sonnabend, one of the first doctors to sound the alarm when he noticed the shockingly high incidence of Kaposi's sarcoma in gay men, and the controversial author Larry Kramer, who "found the sexual Olympics" in the gay community "unnerving" and "was Jane Austen in Erica Jong's world," but who was one of the first to act, writing in the New York Native, that "In the past, we have often been a divided community; I hope we can all get together on this emergency, undivided, cohesively, and with all the numbers we in so many ways possess."
France has done no less than preserve the complicated legacy of a time, a place and a group of marginalized individuals who found themselves forced to fight "the foul truths that a microscopic virus had revealed about American culture: politicians who welcomed the plague as proof of God's will, doctors who refused the victims medical care, clergyman and often even parents themselves who withheld all but a shiver of grief."
"How to Survive a Plague" stands as a remarkably written and highly relevant record of what angry, invested citizens can come together to achieve, and a moving and instructive testament to one community's refusal — in the face of ignorance, hatred and death — to be silenced or to give up.
December 2, 2017
“Silence = Death”
As I write this, it is World AIDS Day in 2017. Last evening, the President of the United States issued a proclamation in commemoration of those who have died, and are living with, one of the worst plagues of modern history. He, however, failed to mention the LGBTQ community that was ravaged by HIV/AIDS.
In 1924, Henry Gerber of Chicago founded the Society for Human Rights, the first--but short lived--gay rights organization in the US. Though other events later occurred to bring about more equality, many historians consider the Stonewall Inn riots of 1969 to be the start of the modern gay rights movement.
Since then, probably the three most important historic events shaping the LGBTQ community include: the HIV / AIDS epidemic that killed hundreds of thousands of gay men, as well as millions more people around the globe--gay and straight, male and female, young and old; the struggle to overturn the Don't Ask, Don't Tell policy that trapped thousands of gay US military personnel inside a lie; and the struggle for marriage equality resulting in the Obergefell decision of 2015 granting marriage to same-sex couples.
These milestones have shaped the life and psyche of almost every living LGBTQ person.
The book, How to Survive a Plague, is the story of the AIDS epidemic, the government’s silence and inaction, and the people (especially gay activists and caregivers) who brought the disease under control. Though it is detailed in following the history of the struggle to win over HIV/AIDS, it is also a story that explains why so many LGBTQ persons “came out of the closet” during this epidemic.
While the book focuses on the LGBT community, it ultimately is about how a group of people refused to die in silence and, in their refusal, changed the world in which we all live.
It is haunting non-fiction book (also a film) rich in details of what is best and worst in politicians, scientists, journalists, friends and family, and people on the street.
It is a narrative of problem-solving, luck, perseverance, community, anger, hope, and love. It also brings to light human compassion, hatred, silence, action, desperation, indifference, competition, and greed.
How to Survive a Plague is study of how the collective history of oppression of LGBTQ persons has shaped that community and caused it to loudly proclaim it will not go back into hiding and, while the book saddens and angers the reader, it also celebrates a community called to creativity, tenacity, love, and action.
As I write this, it is World AIDS Day in 2017. Last evening, the President of the United States issued a proclamation in commemoration of those who have died, and are living with, one of the worst plagues of modern history. He, however, failed to mention the LGBTQ community that was ravaged by HIV/AIDS.
In 1924, Henry Gerber of Chicago founded the Society for Human Rights, the first--but short lived--gay rights organization in the US. Though other events later occurred to bring about more equality, many historians consider the Stonewall Inn riots of 1969 to be the start of the modern gay rights movement.
Since then, probably the three most important historic events shaping the LGBTQ community include: the HIV / AIDS epidemic that killed hundreds of thousands of gay men, as well as millions more people around the globe--gay and straight, male and female, young and old; the struggle to overturn the Don't Ask, Don't Tell policy that trapped thousands of gay US military personnel inside a lie; and the struggle for marriage equality resulting in the Obergefell decision of 2015 granting marriage to same-sex couples.
These milestones have shaped the life and psyche of almost every living LGBTQ person.
The book, How to Survive a Plague, is the story of the AIDS epidemic, the government’s silence and inaction, and the people (especially gay activists and caregivers) who brought the disease under control. Though it is detailed in following the history of the struggle to win over HIV/AIDS, it is also a story that explains why so many LGBTQ persons “came out of the closet” during this epidemic.
While the book focuses on the LGBT community, it ultimately is about how a group of people refused to die in silence and, in their refusal, changed the world in which we all live.
It is haunting non-fiction book (also a film) rich in details of what is best and worst in politicians, scientists, journalists, friends and family, and people on the street.
It is a narrative of problem-solving, luck, perseverance, community, anger, hope, and love. It also brings to light human compassion, hatred, silence, action, desperation, indifference, competition, and greed.
How to Survive a Plague is study of how the collective history of oppression of LGBTQ persons has shaped that community and caused it to loudly proclaim it will not go back into hiding and, while the book saddens and angers the reader, it also celebrates a community called to creativity, tenacity, love, and action.
December 6, 2019
tl;dr - Read this one.
Billed as "the inside story of how citizens and science tamed AIDS," How to Survive a Plague is an incredibly wide-ranging book. The author (David France) is an investigative journalist, which means the book provides a well-written and well-researched account. The author also is a gay man who moved to NYC in 1981.
To be clear, this book is nonfiction - in 640 pages, maybe 30 read like a memoir. But still - the author was there. He didn't just consult the archives and conduct interviews. He lived so much of what is detailed in these pages.
I learned a ton. I felt angry and depressed, and hopeful. I was reminded how the public - and the medical community - reacted in the 1980s. I was wowed by how much grassroots activism and education were conducted, and how their efforts truly saved lives. And I got to learn a bit about the scientific research on HIV/AIDS as well as various treatments. All in all: five stars.
Billed as "the inside story of how citizens and science tamed AIDS," How to Survive a Plague is an incredibly wide-ranging book. The author (David France) is an investigative journalist, which means the book provides a well-written and well-researched account. The author also is a gay man who moved to NYC in 1981.
To be clear, this book is nonfiction - in 640 pages, maybe 30 read like a memoir. But still - the author was there. He didn't just consult the archives and conduct interviews. He lived so much of what is detailed in these pages.
I learned a ton. I felt angry and depressed, and hopeful. I was reminded how the public - and the medical community - reacted in the 1980s. I was wowed by how much grassroots activism and education were conducted, and how their efforts truly saved lives. And I got to learn a bit about the scientific research on HIV/AIDS as well as various treatments. All in all: five stars.
September 9, 2019
I'm not crying, you're crying. This book is beautiful, sad, and somehow still incredibly relevant decades after the peak of the AIDS epidemic. I loved how it celebrated the accomplishments of leaders in the gay community while also admitting that they were often wrong and frustratingly human. Kramer, for example, was both an amazing leader and an incredibly petty man who took his frustrations out on the people around him. Very well-written, researched, and with a powerful personal touch, this book is an amazing one for anyone curious about the history of AIDS in America.
February 22, 2020
This one left my speechless.. Full review to come soon. A great recommendation in any event, and a true eye opener if, like me, you were too young at the time to comprehend the full blow of the AIDS epidemics, and the real impact of the activists in the management of the crisis.
August 3, 2022
Really, really special. Cried many times. Felt a lot of awe and horror and hope and despair. Remind me to write a better review when it’s no longer 2am.
-
Okay, updating the review now... this book was an incredibly insightful glimpse into the the HIV/AIDS epidemic, from a relatively US (and queer, tbh) centric perspective. The level of detail and personal testimony that France managed to incorporate was astounding - I loved (and was destroyed by) his ability to interrelate his own personal experiences and relationship with the epidemic (as was virtually inevitable for a gay man living in New York during the 80s and 90s) with intense, journalistically precise documentation of the various advancements (and setbacks) that AIDS activism and the scientific bureaucracy experienced throughout the period. The constant conflict, inactivity, and trial failures felt disheartening and frustrating at best - at worst, entirely agonising, frequently put into perspective as directly leading to the deaths of millions of people. I'm not sure I can truly process all that whilst remaining sane; it reminds me brutally of the wider phenomenon of political choices killing off infinite swathes of people, which is a reality within politics that makes particularly unbearable contemplation. It's what I read between the lines whenever I hear people dying of preventable diseases; whenever people are killed by the police, commit suicide, starve, are victims of fires preventable if authorities could be bothered to invest in better infrastructure, and beyond. Incoming, as global warming worsens, the sensation deepens in my bones with the knowledge that certain people are facing the brunt of this crisis - they are taking the burden of a disaster they didn't create with their own lives. A like sensation is very prevalent within this book - Reagan, Bush, Clinton. Numerous other politicians, including the like of Jesse Helms. Hands drenched in blood.
Perhaps I'm getting sidetracked. Nonetheless, I guess its wider applicability is a huge credit to 'How to Survive a Plague' - bodies as political tools, in death and life, in dramatic activism. This activism and how it took shape and fluctuated and shifted throughout the epidemic certainly blew me away; the various groups and focuses of activism, in all idiosyncratic variations towards and away from ACT UP's 'drugs into bodies' motto. The work of ACT UP and its associated sub-groups (alongside eventual children organisations) was so incredible to read about; surely one of the greatest feats of modern activism, and one that I've certainly neglected in my previous research on protests. Nonetheless, the incessant infighting and internal conflict even in the face of a wider outside body to fight was definitely relatable and disheartening - maybe an inevitable component of all movements and a necessary force for growth and conversation, but nevertheless a barrier to the unified action that can be most effective.
On a final note, the glimpse at survivors' guilt and a sense of community mourning is, I think, another vitally important takeaway from this book. The weight of the HIV/AIDS epidemic feels unbearable to me, and I wasn't even alive at its (Western) peak. How does a community cope with that level of intergenerational loss? A question for the ages. I frame it as if the majority of the present LGBTQ+ community is desperately trying to move beyond the epidemic's pain, when in reality, I'd be more inclined to criticise how lacking education and an understanding of queer history is. But I guess, ironically, we're reaching a point that many AIDS activists once dreamed of - a point at which HIV/AIDS is not an inevitable conversation and omnipresent cloud over 21st century queer experience, at least not to its prior extent. The legacy remains, though. And as it should. The takeaways of 'How to Survive a Plague' should remain in the public conscience for eternity. I may be full of grief, but I am full of pride and full of awe. And so grateful that this book (and others like it) exists.
-
Okay, updating the review now... this book was an incredibly insightful glimpse into the the HIV/AIDS epidemic, from a relatively US (and queer, tbh) centric perspective. The level of detail and personal testimony that France managed to incorporate was astounding - I loved (and was destroyed by) his ability to interrelate his own personal experiences and relationship with the epidemic (as was virtually inevitable for a gay man living in New York during the 80s and 90s) with intense, journalistically precise documentation of the various advancements (and setbacks) that AIDS activism and the scientific bureaucracy experienced throughout the period. The constant conflict, inactivity, and trial failures felt disheartening and frustrating at best - at worst, entirely agonising, frequently put into perspective as directly leading to the deaths of millions of people. I'm not sure I can truly process all that whilst remaining sane; it reminds me brutally of the wider phenomenon of political choices killing off infinite swathes of people, which is a reality within politics that makes particularly unbearable contemplation. It's what I read between the lines whenever I hear people dying of preventable diseases; whenever people are killed by the police, commit suicide, starve, are victims of fires preventable if authorities could be bothered to invest in better infrastructure, and beyond. Incoming, as global warming worsens, the sensation deepens in my bones with the knowledge that certain people are facing the brunt of this crisis - they are taking the burden of a disaster they didn't create with their own lives. A like sensation is very prevalent within this book - Reagan, Bush, Clinton. Numerous other politicians, including the like of Jesse Helms. Hands drenched in blood.
Perhaps I'm getting sidetracked. Nonetheless, I guess its wider applicability is a huge credit to 'How to Survive a Plague' - bodies as political tools, in death and life, in dramatic activism. This activism and how it took shape and fluctuated and shifted throughout the epidemic certainly blew me away; the various groups and focuses of activism, in all idiosyncratic variations towards and away from ACT UP's 'drugs into bodies' motto. The work of ACT UP and its associated sub-groups (alongside eventual children organisations) was so incredible to read about; surely one of the greatest feats of modern activism, and one that I've certainly neglected in my previous research on protests. Nonetheless, the incessant infighting and internal conflict even in the face of a wider outside body to fight was definitely relatable and disheartening - maybe an inevitable component of all movements and a necessary force for growth and conversation, but nevertheless a barrier to the unified action that can be most effective.
On a final note, the glimpse at survivors' guilt and a sense of community mourning is, I think, another vitally important takeaway from this book. The weight of the HIV/AIDS epidemic feels unbearable to me, and I wasn't even alive at its (Western) peak. How does a community cope with that level of intergenerational loss? A question for the ages. I frame it as if the majority of the present LGBTQ+ community is desperately trying to move beyond the epidemic's pain, when in reality, I'd be more inclined to criticise how lacking education and an understanding of queer history is. But I guess, ironically, we're reaching a point that many AIDS activists once dreamed of - a point at which HIV/AIDS is not an inevitable conversation and omnipresent cloud over 21st century queer experience, at least not to its prior extent. The legacy remains, though. And as it should. The takeaways of 'How to Survive a Plague' should remain in the public conscience for eternity. I may be full of grief, but I am full of pride and full of awe. And so grateful that this book (and others like it) exists.
February 4, 2017
This is an astonishing book. Including the glossary and notes, it tops 600 pages. I am not a fast reader, and I read it in a week. I should say at the outset that I had a personal interest in the material, having lost a partner to AIDS in Boston in 1984 and many friends in the subsequent years. This book has frequently been compared to Randy Shilts' "And the Band Played On" but is more tightly focussed on the formation of ACT UP and its impact on the ultimate development of life-saving drugs. Despite a staggering amount of detail, I was never bored and rarely confused, a testament to Mr. France's meticulous presentation of material. While it often reads as a chronicle of failures, both by government officials and pharmaceutical companies, the author never lets the reader move away from a connection to real people doing deeply committed work under the worst possible circumstances. I cared about them personally and ached for their suffering as year after year passed with only AZT, a drug toxic for most patients and with terrible side effects, to turn to. I hope that there is a special place in Hell for Burroughs-Wellcome executives, Ronald Reagan, Archbishop John O'Conner and Senator Jesse Helms, people who intentionally held back progress on finding a cure for AIDS for their own financial benefit or out of some perverted religious belief.
I bought a copy of the documentary of the same name last year and was deeply moved. There is a visceral difference between reading about Peter Staley scaling the entrance to buildings at the FDA and the NIH and seeing a video taken of the event. I watched the dvd again after finishing the book and felt devastated all over again. Reading the book had deepened my understanding of what happened and my love for the people involved, and seeing them on film, so many of whom died, broke my heart. It's worth having your heart broken to read this book.
I bought a copy of the documentary of the same name last year and was deeply moved. There is a visceral difference between reading about Peter Staley scaling the entrance to buildings at the FDA and the NIH and seeing a video taken of the event. I watched the dvd again after finishing the book and felt devastated all over again. Reading the book had deepened my understanding of what happened and my love for the people involved, and seeing them on film, so many of whom died, broke my heart. It's worth having your heart broken to read this book.
December 19, 2016
I was born in 1981, the same year an article about a new "gay cancer" was published, signaling the start of the HIV/AIDS pandemic. By the time I was old enough to really understand what AIDS was, the YM magazines I read were already full of articles about pretty blonde girls living with the disease, detailed info about condom use, and the oft-repeated reminder that, "anyone can get AIDS." It wasn't until later that I realized that AIDS originated in the gay community, and it wasn't until MUCH later that I understood exactly how much it decimated that community during the '80s and '90s, and how much discrimination early AIDS patients faced.
This book brings into stark relief the hardships endured by those touched by AIDS during the disease's first decade. France refers to AIDS as a plague, and while that might seem a bit melodramatic at first, after several hundred pages of deaths and suffering, that wording becomes undeniable. France humanizes the crisis by including both his own experiences as a gay man living in New York during the height of the epidemic, and those of the scientists, activists, politicians, and journalists working on AIDS, whose personalities are clearly shown, warts and all.
While the coverage of the New York activist/scientific scene can only be described as exhaustive, France goes into much less detail when talking about other AIDS hot spots like San Francisco and Africa. The last half of the the book started to get a bit bogged down by the huge cast of chemicals and characters, and by France's verbatim transcripts of ACT UP meetings and the petty squabbles between rival groups, but I suppose there's no way to avoid that.
Good choice for fans of science writing and GLBTQ history.
This book brings into stark relief the hardships endured by those touched by AIDS during the disease's first decade. France refers to AIDS as a plague, and while that might seem a bit melodramatic at first, after several hundred pages of deaths and suffering, that wording becomes undeniable. France humanizes the crisis by including both his own experiences as a gay man living in New York during the height of the epidemic, and those of the scientists, activists, politicians, and journalists working on AIDS, whose personalities are clearly shown, warts and all.
While the coverage of the New York activist/scientific scene can only be described as exhaustive, France goes into much less detail when talking about other AIDS hot spots like San Francisco and Africa. The last half of the the book started to get a bit bogged down by the huge cast of chemicals and characters, and by France's verbatim transcripts of ACT UP meetings and the petty squabbles between rival groups, but I suppose there's no way to avoid that.
Good choice for fans of science writing and GLBTQ history.
June 4, 2019
The topic of this book is so important, which makes it all the much more frustrating that this was not an enjoyable book to read. I feel like the story could've been told perfectly well in only a quarter of the amount of pages, yet I feel like all those pages only showed a very limited perspective of the AIDS crisis. Most of the times I was just waiting for the next chapter to arrive purely so I could finish the book - one of the worst reasons to read a book. The final chapter was really strong - if the rest of the book had been written in such a captivating way as well, combined with the fair amount of interesting information present in the story, it would've made for an important book that would actually be enjoyable to read.
January 2, 2019
As a history of ACT-UP New York, this is a bit too detailed, but as what it claims to be, it's incredibly narrow. It gives some really important insights into how some activists changed the agenda, but doesn't really explore the science much at all, or the scientists except as encountered by the activists. It doesn't even, except in sour asides, talk about the organisations that sought to do prevention or care work around AIDS. There is only token mention of AIDS in Africa. I found it disappointing - maybe I'd have been less disappointed if it was less misadvertised.
January 27, 2023
I was born in the late 80s and haven’t really started doing my deep dive into my history until now. After living through one pandemic and seeing how fast people mobilized to tackle COVID 19 and then reading about how little they cared because it was a “gay disease” is astounding. I knew the basics of the AIDS epidemic but hearing first hand stories of the people that lived through it and how hard they fought just to be heard is truly awe inspiring!
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