World AIDS Day

Theme for this 30th (!!!) anniversary, per WHO: Know Your Status

I owe one of you Jackals (OzarkHillbilly, probably) a hat tip for this Guardian linkInstagram’s Aids memorial: ‘History does not record itself’ “ :

The Aids memorial on Instagram is unlike anything else on social media – there is nothing trifling about it. The first face I look at is of a New Zealand airline host called Barry Hayden – an ordinary man, extraordinary to the people who loved him, the sort of handsome that looks made to last. There is a lightness about the picture, as if there were no end in sight. The man raises a glass of wine to propose a toast. But it is we who must toast him instead. As the Aids memorial’s profile page explains, this is a place for “stories of love, loss and remembrance”. Scrolling through the feed is like looking at an unending family photograph album in which people are related by one thing: Aids, the disease that has led to the deaths of 35 million people worldwide. There are men, women, a handful of children. Not strength in numbers, only mortal weakness. So many gone – seen here in their carefree prime. The faces are mainly young, often beautiful. The collective impact is devastating…

… The Aids memorial was started in April 2016 by Stuart, a Scot who prefers to keep himself – and his surname – out of the story. Each contributor emails or messages Stuart with the story of a friend or family member affected by HIV. He then posts their text and pictures on to the Instagram feed. If you don’t have a photo of your loved one, he’ll help you find one. If no image exists, an illustration by artist Justin Teodoro will be used instead. This was never a vanity project and Stuart is no fan of social media’s narcissistic routines. Nor does he swank about educating a younger gay generation, even though his site succeeds in doing exactly that. “It’s still taboo to talk about Aids, I thought maybe I could help change that,” he says. “History does not record itself, Instagram reaches a far-ranging demographic.”

The feed has taken off, especially in the US, and has more than 4,500 posts and 67,000 followers. It has attracted high-profile supporters such as Tatum O’Neal, Shirley Manson and Alan Cumming, who appear wearing their Aids memorial T-shirts and posting messages of solidarity. Peter Spears, producer of the film Call Me By Your Name [a gay coming-of-age story], saluted the Aids memorial in his speech at the GLAAD awards in May. One of the posts, he said, about “the mystery of first love” explained the way they made their film. The Aids memorial is, in contrast to the famous Aids quilt – at 54 tons the largest community artwork in the world – a weightless gallery, dominated by photographs. Celebs and non-celebs are remembered and some entries (written either by Stuart or by people who knew them) are about people you may not be aware had the disease, such as 70s tennis superstar Arthur Ashe or actors Anthony Perkins and Alexis Arquette.

Stuart laments the stigma around Aids, even within the gay community: “On dating apps, there are those who seek to date only men who are ‘clean’. There are people fearful of being tested, afraid of what their family – or society – might think were they to test positive. They end up dying because they left it too late. HIV diagnosed can be treated, it’s no longer a life sentence.” Occasionally, Stuart adds, people intending to post have changed their minds at the last minute, fearful of judgment…

You might assume the contemplation of all these deaths would turn mawkish but, as Stuart rightly claims, the feed is not depressing: “Ironically, it’s the opposite.” The feed’s brave hashtag, “what is remembered lives”, is endlessly appropriate. Yet, when I ask about posting these stories day-in, day-out, he admits: “It’s difficult. Sometimes, I feel too emotionally drained to continue. However, I sleep on it. I don’t stop. There’s more to each post than death. I’m reminded to live life to the full, appreciate the people closest to me, be more compassionate, less judgmental, not to sweat the small stuff. I relapse constantly but these daily reminders call me to action.”…

30 replies
  1. 1
    Mary G says:

    There was a clip recently circulated of a newly-elected to Congress Nancy SMASH marching in one of the first parades organized to help AIDS victims. She has been there almost from the start, because her constituents were horribly affected. One of the many reasons I continue to be aggrieved by Seth Moulton, the amateur.

    From a Medium essay by Jeffry J. Iovannone:

    There was, however, a politician who was ready to address the HIV/AIDS epidemic head on: Nancy Pelosi, a newly-minted member of the House of Representatives from California’s 5th district. A 47-year-old Catholic mother of five known for her stylish suits and signature Tahitian pearl necklaces, Pelosi, on the surface, seemed an unlikely champion for those impacted by AIDS. Yet in her first House floor speech, delivered on June 9th of 1987, Pelosi addressed the epidemic, going so far as to state that she had come to Congress to fight AIDS. “Now we must take leadership, of course, in the crisis of AIDS. And I look forward to working with you on that,” she said, in a rebuke of Reagan’s tepid acknowledgment of the disease.

    I helped make a block of an AIDS quilt years ago; the fact that it now weighs 54 tons is both uplifting and horrifying at the same time.

    ReplyReply
  2. 2
    Mnemosyne says:

    I was able to see a most excellent documentary about the life of Howard Ashman, who wrote the songs for most of the best Disney animated musicals of the 1990s before he died far too young of AIDS. I don’t think they’ve been able to get a theatrical release for it, but here’s an article about Ashman that was written when the movie premiered at the TriBeCa film festival this year.

    His Academy Award for his work on Beauty and the Beast was accepted by his partner after he died. It was one of the first times that the Academy publicly acknowledged that openly LGBT people work in Hollywood.

    ReplyReply
  3. 3

    Balloon Juice seems awfully slow today.

    ReplyReply
  4. 4
    Mnemosyne says:

    Also, for folks who are too young to have lived through it, I think that Randy Shilts’ And the Band Played On is still considered the best history of exactly how the crisis unfolded:

    https://www.amazon.com/Band-Played-Politics-Epidemic-20th-Anniversary-ebook/dp/B000V761ZA/ref=sr_1_1?ie=UTF8&qid=1543715715&sr=8-1&keywords=and+the+band+played+on+book

    ReplyReply
  5. 5
    Mnemosyne says:

    @schrodingers_cat:

    It keeps trying to crash my iPad. 😢

    ReplyReply
  6. 6

    One of the AIDS related movies that made an impression on me, was And The Band Played On. Alan Alda was in it as the NIH researcher,
    Dr Gallo, who took credit for the discovery of the AIDS without giving other people working on it their due.

    ReplyReply
  7. 7
  8. 8
    Platonailedit says:

    Whatever happened to dan choi (spl?), the so called gay activist, who used to harass & harangue Pelosi, Obama and other dems who actually cared and did their best for lgbt cause?

    ReplyReply
  9. 9
  10. 10
    delk says:

    September marked 33 years for me. Diagnosed at 23 and never thought I’d see 25 let alone be pushing 60. Lost track of the number of friends that didn’t make it but I hang on to the good memories. Can’t picture some of them as old men though, lol.

    ReplyReply
  11. 11
    debbie says:

    @schrodingers_cat:

    One of the DVD extras for the movie “Philadelphia” was “One Foot on a Banana Peel, the Other Foot in the Grave.” I can’t find much in the way of reviews, but there is this:

    Bottom-line:
    Quite possibly, one of the hardest documentaries to watch. Mainly because, everyone featured in the film have since passed on due to this dreaded disease. As they relate their tales of their early life before and since contracting the virus, there’s an intense feeling of kinship and compassion that flows out of the viewer. You quickly look pass sexual orientations and see your fellow man suffering. But, it’s not all gloom and doom as their stories are so insightful and entertaining…and, yes, sometimes humorous…that you see that this is less a documentary about dying, as it is a celebration of their lives.

    Most of those featured also appeared in the Oscar-winning 1993 film, “Philadelphia”, as extras.

    VERDICT:
    a deeply human experience

    ReplyReply
  12. 12
    Mnemosyne says:

    @Platonailedit:

    As far as I can tell from a quick Google, Choi stopped those protests when DADT was repealed (he attended the ceremony where Obama signed the bill as an invited guest) and then moved to San Francisco to start an HR training/public speaking business. And once he wasn’t protesting Obama from the left anymore, the MSM lost interest in him.

    I found a half-hour interview that someone did with him fairly recently about growing up gay as a Korean-American preacher’s kid:

    http://koreanamericanstory.org.....-dan-choi/

    Things got pretty heated around here in 2010 because there were a lot of rumors going around that somehow Obama was reluctant to fight for a DADT repeal. The vast majority of the people who were mad at Obama for that reason were ecstatic when he did help get the bill through Congress and signed it. A tiny number of them immediately sought out another reason to hate Obama and probably voted for Trump in 2016.

    ReplyReply
  13. 13
    Mnemosyne says:

    @delk:

    I remember scientists saying early on that their goal was to turn AIDS into a chronic, treatable disease rather than an immediate death sentence. It still seems like a minor miracle to me that they succeeded and saved millions of people’s lives.

    ReplyReply
  14. 14
    Yarrow says:

    Since the Bush family is in the news, one good thing W did is to launch PEPFAR to provide funding for AIDS treatment in Africa. It has made a tremendous difference there.

    ReplyReply
  15. 15
    Mary G says:

    @Yarrow: I haven’t read all the threads in all the comments, but I will always honor GHWB for signing the ADA, which has improved my quality of life immeasurably.

    ReplyReply
  16. 16
    randy khan says:

    I knew three people who died from AIDS – a high school classmate (who played the same instrument as me in band) and two others from another part of my life. I lived in the Village at the height of the AIDS hysteria, and remember visiting St. Vincent’s Hospital in 1985 to visit someone who was there merely for regular pneumonia, and thinking about all the men in isolation rooms who were counting down their lives with a disease that nobody understands.

    My best man, Jeff, was a gay man who lived in the Village in those days, too, who got involved in ACT UP and the NAMES Project, and somehow survived that era. I walked with him in a Pride Parade and two gay rights marches, and went with him to find the names of the two people we both knew who AIDS killed when the Quilt was displayed on the Ellipse.

    And now I have a friend who decided to use the time he had left to fulfill his dream to be an artist when he found out he was HIV positive – which he still refers to as having received a terminal diagnosis – but was lucky enough that it happened just when real therapies became available. Today he’s a successful artist, with a house and a husband who makes him happy.

    I am sure that more people could have been saved – maybe not the people I knew who died, all of whom got it pretty early, but a lot of other people – if the government had acted faster and more decisively, but that does not make me less grateful for the people who fought hard to get something done, like Larry Kramer and Mathilde Krim, thousands of medical researchers and doctors, and my friend Jeff and Nancy Pelosi. Not all of them were nice (Larry Kramer, in fact, is proud of that, and maybe he should be), but in the end they made a huge difference. And today I want to remember them, too.

    ReplyReply
  17. 17
    Yarrow says:

    @Mary G: Yes, that was a very good thing he did. It has helped so many people.

    ReplyReply
  18. 18
    Ohio Mom says:

    @Mary G: Yes, Bush gets credit for signing the ADA. It is one of very few examples I can think of where Republicans did anything for the disability community.

    I can’t help but note the onus and expense of the law falls on nongovernmental actors. When it comes time for the government to cough up funding for the programs the disabled community depends on — such as Social Security, Medicaid, IDEA, etc. — well, we already know the Republican stance.

    ReplyReply
  19. 19

    @Ohio Mom: I believe what you just described is what Republicans call an “unfunded mandate” and they claim to hate* this type of thing.

    *Spoiler alert: they’re just to cheep to fund them.

    ReplyReply
  20. 20
    Dan B says:

    Anne;
    Thanks for your post! I think of my friend Ted. We were from a small town in Ohio. He was one of my few friends. I lived 3 miles outside town so didn’t see anyone outside school and my tiny neighborhood but Ted was a real devoted friend. He ended up in Seattle after some years in North Pole, Alaska. We hung out and went backpacking together. One night he got sloppy drunk and kept saying he wanted to tell me something but couldn’t. It pised me off. When he called a couple weeks later I didn’t pick up or return his call. He didn’t call back.
    Months later a friend said something about Ted that didn’t make sense. He’d gone into hospital and was dead in a few weeks. His last call to me was from the hospital. I was too righteous to call back. It’s hurt doubly because he was always the most sincere friend and I’d let him down at the worst moment possible.

    Everyone I lost had a different terrible departure. It was never just one more person dying. It was the way we were pulled apart in our pain and our shared oppression.
    Today we stare at another set of monstrous politicians who want us invisible, however doesn’t matter. Mike Pence did not mention LGBTQ people in his address today. He didn’t mention how he rerouted AIDS money to conversion therapy as Governor.
    And we have David Brooks wanting people to be polite.

    ReplyReply
  21. 21
    trollhattan says:

    @Dan B:
    Pence is Dan Quayle without the gravitas.

    ReplyReply
  22. 22
    Dan B says:

    @trollhattan: or the heart… or less heart… or a gaping hole where their humanity has vanished.

    ReplyReply
  23. 23
    Yutsano says:

    @Dan B: Pence is directly responsible for one of the largest HIV outbreaks in Indiana. He still refuses to even acknowledge any responsibility for his action/inaction on this issue. If he tries to take over for Dolt45, he needs reminded of this.

    ReplyReply
  24. 24
    joel hanes says:

    @trollhattan:

    Pence is Dan Quayle without the gravitas.

    With respect, Pence is

    1. Much much dumber than Dan Quayle. Maybe add another “much”.
    2. A flaming theocrat who truly believes that God has chosen him to make this a Christian nation, with fundagelical notions imposed on the entire population by law, mandatory prayer, LGTB behavior outlawed, etc. in preparation for Rapture and Tribulation, which are imminent.

    In parting, here is a Jan 2014 sketch by a much-missed Indiana pundit who had closely watched Pence’s entire career:
    http://doghouseriley.blogspot......again.html

    ReplyReply
  25. 25
    Dan B says:

    @Yutsano: The list of things that Pence and GHWB did that made LGBTQ people’s lives miserable is long. ADA had gaps that left people without money or solid recourse. Ryan White only applied to “innocent” infants and children. 133,000 people died of AIDS during Bush 1’s time in office. How far did AIDS spread worldwide in that time? Now there are 35 million infected. All because of “morality”.

    Pence and “Mother” would put us back in the same perilous situation. They could never understand that putting LGBTQ people in the sinner / criminal / diseased box left us in a situation where we had limited paths to honest and open lives. We were subject to mafia controlled places to meet – dark and noisy bars and bathhouse, and parks and bathrooms. The trauma abated, people find love and safety, and then the judgement and condemnation arise from the depths.

    A big contingent of LGBTQ refugees from Central America are stuck in Tijuana. Several young couples held wedding ceremonies there. These young people have suffered because if the hatred evangelicals and the Catholic Church have bred for decades, and the dictators installed by our CIA.

    I could go on but it’s time to remember the many people we’ve loved who are no more.

    ReplyReply
  26. 26
    Ruckus says:

    I’m reminded to live life to the full, appreciate the people closest to me, be more compassionate, less judgmental, not to sweat the small stuff.

    This really is great advice for anyone.
    Our lives always end in the same condition, it’s just the time and the amount of suffering before we get there. And while AIDS is a horrible way to go, it isn’t the only horrible way to go. There are many. The fact that people with limited abilities to see life as more than what affects them personally often try to stop help from being made available to anyone suffering horribly is the real shame. We may suffer in our own ways but we are all in this boat together.

    ReplyReply
  27. 27
    Mnemosyne says:

    @Dan B:

    Many years ago, I had a thought that I sometimes call a revelation, because it had that profound an effect on me:

    AIDS was not a punishment.
    It was a test.
    And most people failed it. Some of them, like Pence, continue to fail it to this day.

    ReplyReply
  28. 28
    hervevillechaislounge says:

    I recently watched a 3-part AIDS documentary on the youtubes and almost shit when I saw Donald Trump walking arm in arm with Michael fucking Jackson at Ryan White’s funeral.

    Rush Limbaugh best friend Elton John was at the service playing piano—an ironic twist since Rush has said such heinous things about AIDS victims.

    I know this thread is dead but I had to share!

    ReplyReply
  29. 29
    Villago Delenda Est says:

    delk, so happy you’re still with us.

    My brother was not so fortunate. Passed only about a month and a half before Nancy Pelosi gave her maiden speech on AIDS.

    Miss him every day. I can never forgive Republicans for their inaction then…or like Pence, their inaction recently.

    ReplyReply
  30. 30
    Nicole says:

    @delk: Thirty-three years! That’s amazing, and wishing you many more.

    I knew 3 people who died from AIDS complications- a college professor and two friends (one woman, one man). The professor died in late 1991, just before AZT started offering some hope. The first friend in the early aughts and the second about six years ago. I still think of all of them frequently. The professor, Dr. Payne-Carter, was very open with his students while he was dying, and I think shook a lot of selfish, self-centered, 18-year-olds out of our complacency.

    ReplyReply

Leave a Comment

Leave a Reply

Your email address will not be published. Required fields are marked *