The AIDS Memorial account on Instagram was started in April 2016 by a guy called Stuart who lives in Scotland. Every day, those who’ve died from AIDS are remembered via pictures and words from the people who knew and loved them, as well as first-person accounts from those who are long-term survivors of HIV and AIDS. Stuart—he prefers not to give his surname, to not draw focus from the account (the conversation that follows was conducted via email)—takes emailed submissions and uploads them, trimming the narratives only to fit into the character limit on a post. Those are the facts, but they can’t even begin to describe the incredible emotional pull and profound impact of these stories, which are framed by images of lovers, friends, and familial relationships of every kind. Oftentimes, these posts are timed to coincide with a subject's date of birth, which only adds to the poignancy.
Most of those who are remembered at The AIDS Memorial are unknown, while a tiny few aren’t, though even those who are in the latter category—most recently the porn star Al Parker, or Lance Loud, the first reality TV star in the early 1970s with An American Family—have receded so far back they’re being lost to memory, if they haven’t already done so. But what this brilliant and crucial accounting of lives does is simple: It asks us to engage with each and every person’s story, so that we can honor them and what they went through with dignity and respect. The AIDS Memorial represents the best of what can happen when something most of us use every single day—Instagram—is turned into a powerful means to mourn, remember, and learn.
What was your impetus for founding The AIDS Memorial?
I have always been interested in the stories that I now feature on The AIDS Memorial [or TAM], long before I created the memorial in April 2016. The secrecy, guilt, shame, tragedy, and bravery that surrounds the AIDS epidemic, all this recent history with so many gone and forgotten—not by their relatives or friends, of course, but AIDS is not a subject that we want to be reminded of. I find this period of time fascinating and I didn’t stop and think if anyone else would feel the same. TAM just sort of happened.
Those who lived through the epidemic still suffer from PTSD and don’t want to relive it. It’s still too painful and from the emails I receive, there is the anxiety that they will be judged all over again just because they were in close quarters with someone who has died of AIDS. The stigma [is] real, even today.
The AIDS epidemic is ancient history to millennials. History to them is remembering who won RuPaul’s Drag Race season three! But it’s vital they recognize the struggles they face today are linked to AIDS, and the panic endured by our elders and that what we have gained so far is built upon those, as they were dying of AIDS, who acted up to demand fair treatment from a hostile society. History doesn’t record itself, and although this probably sounds pompous, as a gay man, I feel a sense of duty to make that happen in some way, even if it’s just a dent.
Memorializing those who had died happened in the earliest days of the epidemic, with, for example, the Names Project AIDS Memorial Quilt, which started in 1985. Where does your Instagram account fit into this act of preserving memories?
Yes, there is the AIDS quilt, there are public memorials, but I have always wanted something that is accessible [globally]. I think that part of the problem is that unless this information is “in our face[s],” it’s very easy for us as a society to ignore as we all know [we have] acquired such a short attention span.
But social media has changed all that. Instagram is the perfect medium to reach a far-ranging demographic to enable me to instantly share the stories of not just the famous names that have been covered extensively in the media, but the unknown ones also cut down in their prime, never getting the chance to ever reach their potential.
How do you operate it? Is it just you, or do you have a team of people you work with?
Although I am the only one who posts each day, I class TAM as a collaborative project due to the amount of followers who take the time to submit posts. I’m just the middleman! Other than that, it’s not important to know who I am. TAM is not about me. I’m not comfortable with the attention. I can’t bare it when I see certain Instagram accounts—that are meant to represent an important cause—ending up as a vanity project to benefit only the individual who fronts it.
How do you take submissions for the account?
Anyone can email me their story to theaidsmemorial@yahoo.com. Unfortunately, Instagram limits each post to about 400 characters and sometimes I have to edit, which I hate to do as I never want to take anything away from these tributes.
I used to ask for at least one photograph to accompany the story, but I scrapped that. You can send up to 10 photos but if you don’t have any, it’s totally fine. Justin Teodoro, who is a brilliant NYC-based artist, has created some amazing illustrations that I can use to accompany those stories that don’t have a photo to accompany them.
Posts can be from many different stories from different people about the same person—not just one post about an individual and never again featured! You don’t need to be a wordsmith either! Just a few lines or words will suffice. It’s really that simple.
And I always forget to mention the TAM is now also on Facebook (search: The AIDS Memorial) and Twitter (@theaidsmemorial).
There’s a strong focus on those from the U.S. Is that coincidental, or more of an explicit decision on your part?
Absolutely not! But I’m glad you asked that question because I have been trolled online about this a lot. TAM has evolved organically and is solely driven by those who submit stories. Of course, AIDS didn’t just affect white gay men who lived in America. However, I can’t force anyone to submit a story to TAM. TAM would not exist without people willing to share their truth. Without this, there would be no TAM.
On the other hand, It’s difficult for people to open up and the time may never be right for for them to do so. Countless died in secrecy because of the shame associated with AIDS. I frequently receive messages from family members saying they wished they could share their story on TAM but can’t, mainly because not all family members are on board with the idea. They don’t want anyone to know the real cause, even 25 years later. They have suffered enough and can’t deal with opening old wounds.
It’s no small feat to write to me; to write down your personal thoughts on an email about someone you loved and who has died and then send it to a stranger who then shares with 52k followers is a very brave thing to do. I’m astounded I receive any stories at all. Ironically, I certainly wouldn’t be able to.
I’m not biased as to what I feature on TAM. Although, I hate to generalize—but I’m going to anyway—maybe Americans are more open than, say, us British. Edinburgh in Scotland was [called] the “AIDS capital of Europe” during the epidemic due to intravenous drug use, yet I haven’t featured one story. From my experience living in Scotland, no one talks about that period of time or AIDS today in general.
That could be because Scotland isn’t a particular open society when it comes to talking about these kind of matters or it could be—and I’ve been told many times—that not enough people know that a platform such as TAM exists. I hope as TAM grows it will reflect and give a more balanced view of how AIDS has impacted across the globe.
We’ve seen in the past few years some remarkable accounts of HIV and AIDS, from documentaries (How to Survive a Plague) to films (the brilliant BPM) to television (Pose). Why do you feel we’re seeing greater media attention to AIDS and its impact on our lives? Or do you think we are? Do you think it’s still underrepresented in the culture?
We are seeing greater attention paid to AIDS because the LGBTQ community have more rights now. So naturally, we feel more at ease to talk about our past. We are definitely more vocal and visible and harder to ignore.
However, AIDS is and will always be underrepresented unless, for example, we take a leaf out of the Jewish community’s book who teach about their Holocaust to young school children in their schools and to adult tour groups at Yad Vashem and Holocaust museums, which they have set up worldwide. We must, like them, preserve our history and never forget our own Holocaust or allow it to happen again. The odd film released here and there just isn’t enough.
The message I get from looking at your Instagram account every day is: Keep remembering . . .
There are too many stories on TAM of people who, while dying of AIDS, were scared that they would be forgotten after their deaths. I find this to be so heartbreaking. The hashtag #WhatIsRememberedLives, therefore, is used to evoke some sort of comfort in that those who perished will not be erased from our memories. I also hope through TAM we can also recognize what victimization is and sends out that message that we must try to protect those most vulnerable in our society and not only people with HIV. The shared experiences on TAM in a way are a call to action to never allow anyone—especially the marginalized in our society—to suffer such indignity ever again.