‘What Is Remembered Lives’: How The AIDS Memorial Instagram Commemorates Crisis In A Digital Age

HISKIND was fortunate enough to sit down for a conversation with Stuart, the force behind the AIDS Memorial Instagram, the page doing the vital work of memorialising the countless victims of the crisis.


“This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore…”

— Tony Kushner, ‘Angels In America, Part Two: Perestroika’

Each Instagram post poignantly illuminates their rich and varied histories — their dreams, talents, ambitions, the countless lives they impacted, and the loved ones they left behind.

First off, why did you start The AIDS Memorial Instagram, and what has been the driving force behind it?

I wanted to document these incredible stories that I had read about for many years. Not enough people talk about the history of AIDS, the deaths, and the impact on those left behind. So many people have passed away and have been forgotten. There are varying reasons why. Some reason I get. Others are just excuses. Who really wants to revisit the pain by raking up the past having lived it? AIDS was a taboo subject matter and sadly still is. It has always struck me how many accounts that relate to AIDS don’t actually remember the fallen in some form or if they do they’re celebrity driven. What they do in terms of fundraising is incredible. Yes there is a place for celebrities at parties in fancy frocks “raising awareness” but I feel there is a disconnect. I want to see the face of AIDS, those who perished, disowned, forgotten to be remembered. History doesn’t record itself and I feel a sense of duty to make that happen in some way. The account it just as important as a reminder to remember those who have passed but to also those left behind.

. . Sidney Michael Cheezic . Born: Jan 20, 1952 in Waterbury, CT. . Died: Mar 20, 1991 in Boston, MA. . This is the only picture I have of my Uncle Sid. He died when I was 15 years old. I didn’t know him well. I just remember him visiting us on a few occasions. I also remember we went to visit him in Provincetown once. . Here’s what I do know about him. At the time of his passing he had a boyfriend named Michael W. Moses. They are buried together in Forest Hills Cemetery near Boston. . He was an amazing artist. He lived in Provincetown for a while and then moved to Boston. He doodled alot. . I wish I knew more. I’ve always felt drawn to him my entire life, even after his death. I’m just now realizing what dying of AIDS meant and what he must have gone through those last few months. It breaks my heart. . None of the family went to be with him. My dad’s side of the family were estranged from each other all of my life. No one spoke to each other. I'm sure Michael was by his side until his last breath. . It’s just sad. I’m sad for me, for him, for all of those who died of AIDS." – by Jessica Therrien @foreverlena . A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Sep 13, 2017 at 3:25pm PDT

Can you tell us a bit more about yourself?

I get asked this a lot. My name is Stuart and I live in Scotland. I don’t think it’s particularly relevant to know who I am. The account is not about me. I think that’s probably a Scottish trait. We don’t like to make a show. Im not comfortable with attention. It’s also interesting to find how people interact with me without knowing who I actually I am. I have been criticised for this. I have been told that not showing my face causes some to be skeptical, cautious or even reluctant to submit a post. Why? I’m not trying to sell you 100% Natural Activated Charcoal Face Masks or Teeth Whitening Kits. But anyway, Instagram tends to be an illusion of sorts. I’m more real than some of the slactivists that you will find on Instagram. So yes, there will be a long wait to find a selfie of me posing pigeon toed with a teapot arm. However never say never…

What was it like to live through the height of the epidemic and how did this impact your choice to run this project?

I was a kid in the 1980’s. I was raised a Catholic. I didn’t know much about sex, let alone gay sex. I remember a relative who worked in an AIDS ward warning my cousins about unsafe sex. I found this confusing and embarrassing. Then I remember adverts on TV commissioned by the government which were designed to scare that crap out you — and they did. I remember how the gays were vilified even more. I felt doomed and along with Catholic guilt and AIDS made it even more difficult for me to come out of the closet. When I did come out, I still did not want to know about AIDS. I switched off. I wanted to be detached from it. I was scared that it would happen to me. I’d change the conversation when AIDS cropped up. I turned the page when I saw an obituary. Switched TV channels. It was too depressing. I was young. No-one was going to burst my bubble. This account has helped me understand the subject of AIDS more than I could ever have imagined.

. . "Tony 'Pat' Farrell was as outspoken and feisty as his "Irish/Afro-Caribbean/Birmingham" heritage would suggest. . A force to be reckoned with, he blazed through the London nightclub scene delighting all with his savage wit and unsubtle glamour. . Tony kept a little black book where he listed all the names of people who he had lost to AIDS. . "Fetch me The Book," he would say, "I've had a bit of Bad News." Or Good News, depending. . He had developed a sort of gallows humour about AIDS which was how he coped. . He had stickers with peoples initials on almost all his possessions – "for when I go." . Always ready with a movie quote for every situation, he loved sharing his knowledge of Hollywood, and knew a heck of a lot. . His favourite film was 'Imitation of Life' and he identified with both stoic Annie Johnson and her rebellious daughter Sarah Jane. . To him I was the Lana Turner character, which he meant affectionately. I think." – by Donald Urquhart @donald.urquhart . #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids #lgbthistory A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Aug 20, 2017 at 9:30am PDT

Are you affiliated to any bigger AIDS memorial projects or organisations?

Im not affiliated to any bigger memorial project. Except to say that I am a huge supporter of Bobby Heller, John Gile, and John D’Amico, who are involved in creating ‘The AIDS Monument‘, a fine art structure being built in West Hollywood Park which seeks to honour and memorialise the impact of AIDS in the United States. You can support their cause by following them on Instagram or by visiting STORIES: The AIDS Monument | West Hollywood, CA

One of your hashtags is #WhatIsRememberedLives — what does this mean to you in the context of the memorial?

So many of the stories I have received tell of those who succumbed to AIDS being scared that they would be forgotten. This make me so sad. Everyone leaves behind a legacy after they die. Leaving behind a legacy is important even if you have died of AIDS. “What is Remembered Lives” is just a perfect caption. It evokes the comfort in knowing that once we are gone we will not be erased from the memories of others. Every time I post, the memories or legacy will be remembered far and wide and in turn hopefully influence the lives of others.

. . "1983 Dallas, TX. Everybody's dead except me." – by Jimmy James @jimmyjamesgram . #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids #lgbthistory A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Aug 9, 2017 at 2:00pm PDT

What’s the general level of submissions and what’s the process of submitting a story?

There isn’t a day that goes by when there isn’t a story to share. What is featured so far on The AIDS Memorial is just the tip of an iceberg. I don’t set limits on posts meaning that I will feature a loved one over and over again. 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 can be emailed at theaidsmemorial@yahoo.com, the maximum word count 400 words, minimum of 1 photo and maximum of 10. You don’t need to be a wordsmith either. Just few lines or words will suffice…Its really that simple.

Are there any submissions that have really stayed with you?

I usually say I cant pick one. I mean that. However I want to point out this post. Totally broke my heart. He died recently. The posts speak for themselves:

https://www.instagram.com/p/BWNp5ZGl1lA/

https://www.instagram.com/p/BWSe-VLFycn/

"My brother #GeraldJoyce was found I believe Nov 1st 2015 driving erratically an hour from his home in Nashville. Thank God the officer who pulled him over was a former EMT. After realizing he could not walk a straight line he looked at his eyes again and realized one was dilated and one was pinpoint and called an ambulance. This officer was given an award for his actions in January of this year. I was finally able to speak to him and thank him for helping Gerald and not mistaking him for being intoxicated. . Gerald surely would have died in jail. His CD4 count was 4 at that time. He had no information on him as far as people to call. He knew he had family in VA but couldn't remember our names. He was taken to Skyline Medical in Nashville and we were notified 11-9-15. We drove 6.5 hours and we're told when we arrived it was HIV. The next day we were told it was full blown AIDS and without knowing who his family was had done a brain biopsy days before and found numerous lesions on his brain. . On 11-12-15, Gerald was released due to as we feel having no insurance and deathly ill. @nashvillecares stepped in and my dad transported him to #VanderbiltMedicalCenter where he spent 2 months before we were told they had done all they could. . Gerald was placed on Hospice and taken to Kingsport TN to a nursing home an hour and a half away from us in January 2016. He was unable to care for himself, didn't know where he was and was incontinent. I would visit him every weekend as I work full time and sometimes we would get the dreadful call to come that he had took a turn for the worse and we would take off. My sweet dad is retired and would go 4 days a week to Kingsport to be with him, take him food and try to get him to eat, most days he would not eat. . Gerald always thought he was at work while there and they would often let him answer the phone for them which was awesome. Gerald always went room to room visiting the other residents there, he was so sweet. We have always been thankful for the care and compassion they showed him there." – by Karen Helmandollar @karen_hel . #whatisrememberedlives #theaidsmemorial #endaids #neverforget A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Jul 9, 2017 at 1:16am PDT

Do you think that LGTBQ Communities and younger generations in particular are sufficiently active and devoted in their attempts to remember the loss of life or are we too complacent?

Of course not. Who am I to judge. I did that too. I am trying to make up for that. It’s important that the younger generation realise that the homophobia they face today is linked with AIDS, and the gay panic faced by our forefathers. However AIDS is not a focus for them. It doesn’t fit with selfie induced instagay love-is-love narrative. Who wants to hear grandfather’s war stories? But everything we gays have gave gained today is built on that older generation who as they were dying of AIDS, acted up to demand fair treatment from a hostile society. I now have a blog on Poz Magazine, thanks to Trenton Straube, where I want to focus on these particular issues. I interviewed Jack Mackenroth for the first feature. If you’re newly diagnosed with HIV your will find his words truly inspiring.

"A photo of a photo of me and my late bf Greg Beutler. He was fucking stunning. He died in 1996, at age 33, 4 days before the Atlanta Olympics. I told my mom I was positive then and she planned my funeral with my aunt Susie. This is not meant to be a buzz kill but a story of survival, remembrance and triumph. Greg was one of the kindest people I ever met. I introduced myself to him on a dance floor in Miami because he had KS on his arm and I only dated other positive guys. He died abruptly about 2 or 3 years later. I still miss him. Fuck you AIDS." – by Jack Mackenroth @jackmackenroth . #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids #lgbthistory A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Aug 18, 2017 at 5:28am PDT

How should our queer legacy be handed down?

Through The AIDS Memorial I have come across so many great people who are preserving our history with their work. You only have to check out recent novels by Tom Eubanks – ‘Ghosts of St Vincents‘, Eddie Casson‘Farm Story’ or JC Burke‘The Things We Promise’. Also I really admire and am inspired by what Nelson Santos and Esther McGowan do in preserving the legacy of AIDS at Visual AIDS (also on Instagram). Mike Balaban’s Instagram and his website, Capturing Rainbows, are fantastic resources too. JD Doyle has curated one of the best LGBT archives on the internet.

. . "I remember the first time we kissed. . It was seconds before I snapped this picture. . We were sitting on the hood of my ’79 Fiat convertible. We had just met, we were outside Gelo’s bar on Paradise Road, the sparkling city beyond. I opened the trunk. "Here hold this clock,” I said, "I want a picture of you with this clock." I leaned in and kissed him, stepped back and snapped this picture. . It was Las Vegas, the late fall of 1985, and those lips, soft and willing and like mine wanting attention. For that moment, I think we could only see each other. "We’ll remember this time,” he said, pointing at the clock face, "Get it?” I got it. . We kissed again. I played with his tie – unbuttoned his shirt. We talked about art. And English literature. And the empty fullness of Las Vegas. . We went on some dates. His floppy hair and sweet voice that would tell me stories of poets and poems and new things I never knew I needed to know. He worked in a local hospital. He would visit me at my job at a downtown coffee house. . One weekend in early 1986, all bundled up, we drove to LA with the top down to listen to Pierre Boulez's "Repons" at @ucla. I was transported by the music. And him. He pressed his knee against my leg. He always smelled like fresh laundry. We walked along Melrose. We ate hot dogs at the Tail of the Pup. . And then we drifted apart. I can’t remember why. It happens. It happened. . I finished college and moved back to LA a few months later. I heard that he’d died from a friend of a friend. In 1994. When so many others were dying. When I was caught up in the facts and fears and features of my own life. . I’m glad I have this photo of Steve and these memories. . Look at him in this picture, that dreamy hair and those eyes and that Adam's apple. So happy. He had soft skin. And a flat stomach. And such a sweet grin. He was a regular nice guy. I love this photo. I have kept it all these years. And now it’s kept here too and you have a copy. . Steve Small (1962-1994)." – by John D’Amico (@ourweho) . #whatisrememberedlives #theaidsmemorial #aidsmemorial #endaids #neverforget #lgbthistory A post shared by THE A I D S M E M O R I A L (@theaidsmemorial) on Aug 19, 2017 at 11:25am PDT

You can follow The AIDS Memorial Instagram here.