[ID: a series of tweets by @ NoahTzedek that say: “Seeing so many people saying “I did everything right” as they say they’ve had a breakthrough case of covid. It is dangerous to moralize contracting a deadly disease. you cannot personal responsibility your way out of a public health disaster.
I understand the instinct to say “I did everything right” when there’s been a complete lack of national guidance, & we’re being told to manage a global pandemic on a hyper local level. We focus on what is in our control. This is also how children react when they’re being abused because it feels safer to focus on what they can control than leave relationships with those harming them, who have power over them.
HIV/AIDS activists have taught us about the danger of moralizing illness. They showed us the collective power we can have when we recognize that it is governmental neglect that is placing us at risk, & our fates are intertwined.” End of tweet.
The image below is an edited screenshot of The Golden Girls. Rose says, “No. I’m just saying that I’m a good person.” Blanche responds “Covid is not a bad person’s disease, Rose.” (The word “Covid” is edited in.) /End ID]
Honestly, we can learn so much from hiv/aids activists. They spend years perfecting the art of encouraging safe behavior in their community without shaming those who did get hiv and while always prioritizing the demand for real systematic protection and universal access to health care.
[ID: two grainy images from a 1980s video, one with bright colored vertical lines and the words ‘all people with aids are innocent’, one black with the worlds ‘clean needles save lives’, both in all caps]
And sure, this is a different disease and a different situation, but the basics are still the same: either we support the sick or we moralize along a health/sickness binary, either we tear each other apart for imperfections or we fight the system.
I sure as hell didn’t do ‘everything right’ over the last 2 years. I’ve been to meetings with more people than should have really been together. I’ve stood shoulder to shoulder with people under a small shelter when a sudden downpour ruined our 6-feet-apart picnic. I’ve hugged my friends. I’m a human being.
I could hide my moments of irresponsibility and get angry at others for their flaws, but that wouldn’t make any of us any safer, it would just put anger and suspicion between us when we could be standing together and focusing on the real problem.
(Sidenote, if you want to learn more about how moralizing ‘health’ does nothing except harm the marginalized, also definitely check out fat activists and chronically ill activists.)
Recently, I’ve been rewatching 90210 on netflix (guilty pleasure) and I was watching an episode where Dixon’s ex-girlfriend had tested positive for HIV. After I saw it, I began to think of some high risk situations that I have put myself in in the past and I felt a little bit nervous. I had never been tested for HIV, I always felt like it just wasn’t something people had, or that I would be in contact with. I don’t know what it was but it seemed very distant from me and my life. It might be odd, but seeing the storyline pan out on the show, I realised that it can be a reality for anyone and that I needed to get tested.
I’ve always been anxious about HIV testing, probably because I had the idea in my head that it would be very full on. I imagined a lot of blood and needles and days waiting periods. So to help me work up the courage to go in, I waited until I needed a refill of my contraceptive pill.
After I had sorted everything else out, I asked what STD testing they do at Brook and the nurse told me about the HIV and Syphilis test and asked if I wanted to do one. It was incredibly easy, none of the needles in my arms that I’d been scared of. It was just a finger prick to draw a little bit of blood. The test was over in under 5 minutes and I had a definite result. I was really happy that there wasn’t a waiting period for the result as I know it would have made me very anxious. As someone who was fairly nervous about getting tested I was made to feel very safe and comfortable through my visit. I never felt like I was being judged.
My reason for getting tested was for my own peace of mind, but there are so many reasons to get testing for HIV and other STD’s. It might be that you want to sleep with a new partner and the two of you want to go to get tested together, it might be that you know you’ve been in a risky situation, It could be that you want to encourage your friends to get tested too. Ultimately it’s about keeping yourself and others healthy and safe. It’s always better to know.
Here I’ve linked a website that provides support for people who are HIV Positive.
20) Pink - Walk Me Home [Debut] 19) Kane Brown & Becky G. - Lost in the Middle of Nowhere (-6) 18) Nicki Minaj - MEGATRON (11) 17) Rosalia & J Balvin f/ El Guincho - Con Altura (-1) 16) City Girls - Act Up[Re-Entry] 15) Mike Posner - Stuck in the Middle (-3) 14) Jessie Reyez & 6LACK - Imported (+4) 13) Ciara - Set (+2) 12) Kaskade & Meghan Trainor - With You (+7) 11) Daddy Yankee & Katy Perry f/ Snow - Con Calma (-1) 10) Iggy Azalea - Started (+4) 9) Taylor Swift - You Need To Calm Down (+2) 8) Katy Perry - Never Really Over (-4) 7) Lizzo - Truth Hurts (=) 6) Sebastian Yatra, Daddy Yankee & Natti Natasha f/ Jonas Brothers - Runaway (=) 5) Khalid - Talk (-2) 4) Bea Miller & 6LACK - it’s not u, it’s me (+1) 3) Jonas Brothers - Sucker (-2) 2) Billie Eilish & Justin Bieber - bad guy (+6) 1) SHAWN MENDES & CAMILA CABELLO - SEÑEORITA (+1)
Contenders: Stephen Puth - Look Away Zara Larsson - Don’t Worry Bout Me Beyoncé, Donald Glover, Billy Eichner & Seth Rogen - Can You Feel The Love Tonight
Have you ever had a medical professional describe your care as a collaboration between you and your doctors? Has a family member with a terminal illness been given expedited access to experimental treatments? Then your experience of medical care in America has been profoundly shaped by the AIDS crisis, and by ACT UP.
ACT UP was not the first or the only group involved in reforming the way medical research and medical care were done. Feminist health movements in the 1970s were an important forerunner, and feminist activism continued to be critical: in 1987, the Congressional Women’s Caucus got the National Institutes for Health (NIH) to change rules that kept women of child-bearing age out of all federally-funded medical research. The disability rights movement has been part of changing the conversation as well.
But AIDS activists, and particularly ACT UP, radically changed the face of medicine as we know it. By engaging with researchers, pharmaceutical companies, regulators, and doctors at all stages of the drug and treatment pipeline, by educating themselves on and challenging the orthodoxies of medical science, and by using the sheer numbers and anger of their members to their advantage, they created radically new relationships between patients and the medical establishment.
In the mid- and late-1980s, ACT UP targeted the FDA directly in its protests, including an October 1988 protest at the FDA’s headquarters that resulted in 150 arrests. ACT UP also sent well-informed activists to hearings and conferences, speaking to scientists directly, and challenging the FDA’s drug approval practices not just as unethical but as methodologically unsound. This willingness to engage with medical authorities both on their own terms and as outside agitators, as well as the real urgency of the HIV/AIDS epidemic, led to significant change.
The FDA approved rules that allowed terminally ill patients expanded access to a drug undergoing phase II or III trials (or in extraordinary cases even earlier) if it potentially represented a safer or better alternative to other treatments. They also created a “parallel track” system to get potentially lifesaving drugs to patients who could not take part in clinical trials. The FDA’s official consulting with patient representatives as part of approving new treatments began with AIDS, but quickly expanded to include a range of cancers as well.
Gay urban men with AIDS, already connected through their pre-existing community, taught themselves and each other about the disease, and challenged their doctors about their care. The extent to which patients sometimes knew more about the disease than their doctors meant that the traditional balance of power in the medical relationship shifted.
By 1988, there was an entire infrastructure encompassing treatment publications and buyers clubs, advocacy groups and grassroots activists — a firm foundation that could then support widespread dissemination of medical knowledge. And by this point, these organizations’ knowledge about AIDS often exceeded that of the average practicing physician. “When we first started out there were maybe three physicians in the metropolitan New York area who would even give us a simple nod of the head,” said the director of a New York City buyers club in 1988. “Now, every day, the phone rings ten times, and there’s a physician on the other end wanting advice. [From] me! I’m trained as an opera singer!” (source)
It’s become a truism now that patients should learn about their conditions and their care, but it was largely people with AIDS who, in their numbers and their vehemence, shook up the medical establishment’s perspective on the doctor/patient relationship, and the ingrained belief that doctor knows best.
Sexual expression has always been a critical component of queer identity, and ACT UP tended to favor a more radical sexual politics. Gran Fury was looking for a way to articulate it, and Read My Lips was our first stab at it.
[… I]t seems inconceivable in the post-gay twenty-first century that images of queer kissing could ever have been so controversial, but the layering of queer sexuality and AIDS was explosive in our culture at the time. When ACT UP NY staged its first Kiss-In in 1988 on the AIDS and Homophobia day of the ACT NOW demonstrations, television had witnessed only a smattering of primetime lesbian and gay characters and had yet to see its first queer kiss. […]
Read My Lips was not the first work by the newly formed Gran Fury, but it was the first to bring us national recognition, by symbolizing the growing queer nationalism ACT UP had precipitated. The homophobia that was one of the root causes for the crisis had activated much of queer New York, and the Monday night meetings at the Center were a point of assembly around it. ACT UP was also politicizing people who were there to do something about AIDS but had not done activism around homophobia before. So while Read My Lips was just one of five posters we’d designed for the nine days of action, it was the only one to capture the attention of the larger lesbian and gay community and to have a life beyond its original use. In the process, it drew a lot of attention to the collective.
Reagan’s vice president, George H. W. Bush, sent up a trial balloon that captured the American imagination during an early stump speech for his 1988 presidential campaign, saying, “Read my lips: No new taxes.” It became a defining sound bite during his uncertain candidacy, which had been plagued by accusations of spinelessness from his party’s far-right base, and by critiques from the media for its patrician manner and overall lack of vision. ACT UP NY had already decided that a same-sex kiss-in would be our demonstration here in NYC, and Tom [Kalin], who was drawn to the AIDS and Homophobia day because of his own work as an artist around images of kissing, threw down a proposal: what if we appropriated this slogan, coupling it with an image of a same-sex kiss? Over the coming years we would frequently argue over text for weeks on end, but this was the first of the rare “Aha!” moments Gran Fury occasionally had. With one gesture, it clearly illustrated the point of the demonstration, squatted on Bush’s newfound defiance for our own ends, and dragged the neglectful Reagan AIDS policies onto the playing field. […]
Mark Harrington was trying hard not to grin at the next [Gran Fury] meeting as he unveiled the image he’d found in a fifties gay porn magazine. Even though both men’s genitals were exposed, that is not where your eye went. It was toward the lip-lock, one with great gestural power, and it seemed oddly passionate for pornography. The vintage photo added layers of historical certainty to the affirmation of queer existence, further rooting the politics of the project. Only a handful of people were there, and by my recollection none of the women or people of color working in the collective were at this meeting, which raises the question of whether its whiteness would have been so immediately acceptable at another meeting. But I recall no discussion about it that day, or any time spent considering alternatives. In fact, because it captured both the tension and irony we were looking to convey, we spent little time even extolling the image’s virtues. I instigated a brief discussion about whether the sailor insignia would sideline the political rationales for the demonstration by eroticizing militarism, and Mark Simpson and I spent some time considering retouching it before being overruled.
[…]
The shirts nailed the zeitgeist within my immediate circle, many of whom went on to form the group Queer Nation, and it became a badge of courage within activist communities. We added the T-shirts just before Pride that year, and in no time, they were outselling Silence = Death. Soon there was enough demand for them to lead to national distribution through additional sales outlets and other ACT UP chapters. Several months later I got a message on my answering machine from the manager of the ACT UP workspace, who had fielded a call by a man who wanted to be put in touch with the image’s designers. There was a chance it could lead to another project for Gran Fury, but I was also nervous about it. I swallowed, deeply, and dialed the California area code. A man answered, and I introduced myself as a member of the collective.
“Oh! Thanks for getting back to me,” he said. He sounded a little surprised to hear from me, and older, but he would not have been older than I am now.
“So, what can I do for you?” I asked after we exchanged pleasantries.
“I’m one of the men in that picture,” he answered calmly, with a little amusement and no trace of menace.
I was not so calm, but I tried to sound as if I was. It is the kind of call artists who work with appropriated images live in fear of. I looked at the floor and then scanned my bookcases.
“Wow. Really?” I swallowed again. “So what can you tell me about it?”
“Well,” again, calmly, “the other man was actually my boyfriend. We met in the navy, stationed on the same ship. We were on leave in San Diego at the time.”
“Wow,” I said again, vamping while I took it in, my mind racing. “So the sailor thing wasn’t just for the pictures?” I was actually surprised by that. I assumed the military aspect was staged. But the kiss was so charged it seemed to transcend performance, and now I knew why. “Who took the picture?”
“Well, one night we were approached by a photographer at a local gay bar who told us he was assisting a famous photographer on a fashion shoot in LA. They had come down to San Diego to go to the bars.”
“Was it Horst?” I interrupted, for no particular reason. I had recently worked with Horst, and knew not only that he was a flirt but that he shot a fair deal in LA during that period.
“That sounds familiar,” he responded, but I got the sense I had led him into that answer and he was being polite. He was very polite.
“Anyway, he asked if they could take pictures of us, and we said, ‘Sure.’ So we went back to the studio with them, and he started taking our picture.” He sounded delighted as he told me the story. “And then he asked if we would kiss, so we did, and we got a little carried away.” The cropping of the demo poster conceals the fact that the men were semi-erect in the original image, and he delivered this line a little coyly. He actually seemed shy about it.
“I thought no one would ever see it,” he went on, as if some kind of jig was up, and he was possibly a little embarrassed. I wasn’t sure he even knew we’d found the image in a skin magazine, and decided not to mention it.
“That is some story,” I circled back. And then I waited, afraid to say anything else. I was actually waiting for the other shoe to drop.
“Anyway, you can imagine how surprised I was when I saw someone wearing that T-shirt at Gay Pride here in LA!”
I swallowed again. “I’ll bet!”
“… So I asked him where he got it, and he said it was from ACT UP!”
“I’d love to send you one!” It seemed like the right thing to say.
“Oh, god, no, I would never feel comfortable wearing it.” He sounded completely sincere, but he also seemed to like saying it. And then it went quiet for a beat.
“Anyway, I just wanted you to know how great it is for me to know it could be used to help the community, especially now. It makes me so proud, and I just wanted to thank you.”
No shakedown, no request for royalties, no cease and desist. Just pride. Which is exactly what it felt like to declare yourself during that terrible moment, to stand up and be counted when you were needed, simply because it was the right thing to do.
— Avram Finkelstein, After Silence: A History of AIDS through Its Images (2017), Ch. 4.
Larry Kramer is impossible to ignore. Loud, passionate, and dedicated to the causes of LGBT+ History & AIDS eradication, Kramer co-founded some of the largest AIDS organizations in the world, wrote countless books and plays about the real lives of people with AIDS, and never stopped fighting for the advancement, success, and safety of LGBT+ people in NYC and beyond. Read more about his crucial involvement in the AIDS crisis here:
Vito Russo was a film historian, critic, author, and major voice for gay rights and AIDS visibility. The disease ultimately took his life in 1990, when he was 44 years old. Read more about his lasting impacts on equality and visibility here:
Every day in June, I will be posting an illustration that highlights an LGBT+ activist who I believe everyone should know. This series will be in no way comprehensive, & will include a multitude of identities, races, sexualities, and genders.
A friend of mine in New York City has a half-fare transit card, which means that you get on buses and subways for half price. And the other day, when he showed his card to the token attendant, the attendant asked what his disability was and he said, I have AIDS. And the attendant said, no you don’t, if you had AIDS, you’d be home dying. And so, I wanted to speak out today as a person with AIDS who is not dying.
You know, for the last three years, since I was diagnosed, my family thinks two things about my situation. One, they think I’m going to die, and two, they think that my government is doing absolutely everything in their power to stop that. And they’re wrong, on both counts.
So, if I’m dying from anything, I’m dying from homophobia. If I’m dying from anything, I’m dying from racism. If I’m dying from anything, it’s from indifference and red tape, because these are the things that are preventing an end to this crisis. If I’m dying from anything, I’m dying from Jesse Helms. If I’m dying from anything, I’m dying from the President of the United States. And, especially, if I’m dying from anything, I’m dying from the sensationalism of newspapers and magazines and television shows, which are interested in me, as a human interest story – only as long as I’m willing to be a helpless victim, but not if I’m fighting for my life.
[…]
If I’m dying from anything – I’m dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit. You know, living with AIDS in this country is like living in the twilight zone. Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you’ve lost more of your friends, but nobody else notices. It isn’t happening to them. They’re walking the streets as though we weren’t living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.
And it’s worse than a war, because during a war people are united in a shared experience. This war has not united us, it’s divided us. It’s separated those of us with AIDS and those of us who fight for people with AIDS from the rest of the population.
Two and a half years ago, I picked up Life Magazine, and I read an editorial which said, “it’s time to pay attention, because this disease is now beginning to strike the rest of us.” It was as if I wasn’t the one holding the magazine in my hand. And since then, nothing has changed to alter the perception that AIDS is not happening to the real people in this country.
It’s not happening to us in the United States, it’s happening to them – to the disposable populations of fags and junkies who deserve what they get. The media tells them that they don’t have to care, because the people who really matter are not in danger. Twice, three times, four times – The New York Times has published editorials saying, don’t panic yet, over AIDS – it still hasn’t entered the general population, and until it does, we don’t have to give a shit.
And the days, and the months, and the years pass by, and they don’t spend those days and nights and months and years trying to figure out how to get hold of the latest experimental drug, and which dose to take it at, and in what combination with other drugs, and from what source? And, how are you going to pay for it? And where are you going to get it? Because it isn’t happening to them, so they don’t give a shit.
And they don’t sit in television studios, surrounded by technicians who are wearing rubber gloves, who won’t put a microphone on you, because it isn’t happening to them, so they don’t give a shit. And they don’t have their houses burned down by bigots and morons. They watch it on the news and they have dinner and they go to bed, because it isn’t happening to them, and they don’t give a shit.
And they don’t spend their waking hours going from hospital room to hospital room, and watching the people that they love die slowly – of neglect and bigotry, because it isn’t happening to them and they don’t have to give a shit. They haven’t been to two funerals a week for the last three or four or five years – so they don’t give a shit, because it’s not happening to them.
And we read on the front page of The New York Times last Saturday that Anthony Fauci now says that all sorts of promising drugs for treatment haven’t even been tested in the last two years because he can’t afford to hire the people to test them. We’re supposed to be grateful that this story has appeared in the newspaper after two years. Nobody wonders why some reporter didn’t dig up that story and print it 18 months ago, before Fauci got dragged before a Congressional hearing .
How many people are dead in the last two years, who might be alive today, if those drugs had been tested more quickly? Reporters all over the country are busy printing government press releases. They don’t give a shit, it isn’t happening to them – meaning that it isn’t happening to people like them – the real people, the world-famous general public we all keep hearing about.
Legionnaire’s Disease was happening to them because it hit people who looked like them, who sounded like them, who were the same color as them. And that fucking story about a couple of dozen people hit the front page of every newspaper and magazine in this country, and it stayed there until that mystery got solved.
All I read in the newspapers tells me that the mainstream, white heterosexual population is not at risk for this disease. All the newspapers I read tell me that IV drug users and homosexuals still account for the overwhelming majority of cases, and a majority of those people at risk.
And can somebody please tell me why every single penny allocated for education and prevention gets spent on ad campaigns that are directed almost exclusively to white, heterosexual teenagers – who they keep telling us are not at risk!
Can somebody tell me why the only television movie ever produced by a major network in this country, about the impact of this disease, is not about the impact of this disease on the man who has AIDS, but of the impact of AIDS on his white, straight, nuclear family? Why, for eight years, every newspaper and magazine in this country has done cover stories on AIDS only when the threat of heterosexual transmission is raised?
Why, for eight years, every single educational film designed for use in high schools has eliminated any gay positive material, before being approved by the Board of Education? Why, for eight years, every single public information pamphlet and videotape distributed by establishment sources has ignored specific homosexual content?
Why is every bus and subway ad I read and every advertisement and every billboard I see in this country specifically not directed at gay men? Don’t believe the lie that the gay community has done its job and done it well and educated its people. The gay community and IV drug users are not all politicized people living in New York and San Francisco. Members of minority populations, including so called sophisticated gay men are abysmally ignorant about AIDS.
If it is true that gay men and IV drug users are the populations at risk for this disease, then we have a right to demand that education and prevention be targeted specifically to these people. And it is not happening. We are being allowed to die, while low risk populations are being panicked – not educated, panicked – into believing that we deserve to die.
Why are we here together today? We’re here because it is happening to us, and we do give a shit. And if there were more of us AIDS wouldn’t be what it is at this moment in history. It’s more than just a disease, which ignorant people have turned into an excuse to exercise the bigotry they have always felt.
It is more than a horror story, exploited by the tabloids. AIDS is really a test of us, as a people. When future generations ask what we did in this crisis, we’re going to have to tell them that we were out here today. And we have to leave the legacy to those generations of people who will come after us.
Someday, the AIDS crisis will be over. Remember that. And when that day comes – when that day has come and gone, there’ll be people alive on this earth – gay people and straight people, men and women, black and white, who will hear the story that once there was a terrible disease in this country and all over the world, and that a brave group of people stood up and fought and, in some cases, gave their lives, so that other people might live and be free.
So, I’m proud to be with my friends today and the people I love, because I think you’re all heroes, and I’m glad to be part of this fight. But, to borrow a phrase from Michael Callen’s song: all we have is love right now, what we don’t have is time.
In a lot of ways, AIDS activists are like those doctors out there – they’re so busy putting out fires and taking care of people on respirators, that they don’t have the time to take care of all the sick people. We’re so busy putting out fires right now, that we don’t have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month and the next week and the next year.
And, we’re going to have to find the time to do that in the next few months. And, we have to commit ourselves to doing that. And then, after we kick the shit out of this disease, we’re all going to be alive to kick the shit out of this system, so that this never happens again.
AIDS ISN’T OVER FOR ANYBODY UNTIL IT IS OVER FOR EVERYBODY! ACT UP 30th Anniversary Rally, NYC AIDS Memorial Park, March 30, 2017. Photo by Molly Gingras
Join the fight. ACT UP still meets every Monday at 7pm at the LGBT Center in NYC.
