The AIDS Memorial Instagram

December 1, 2018 marks the 30th anniversary of World AIDS Day. Every year since 1988 we as a global community on this day show our support for those living with HIV and remember those we have lost due to HIV/AIDS. It’s a day to wear a red ribbon, donate and participate in activities that focus on remembrance and continued support.
Words by Alexandria Deters


For many people, such as myself, remembering the people we lost too early and supporting my positive friends is a daily occurrence and a part of my life. Whether it’s friends discussing the multiple medications they are taking, watching your favorite queens discussing the importance of PrEP, seeing signs in the subway for GMHC or memorials dedicated to the lives of those taken too early.

It is through this general awareness that I discovered the The AIDS Memorial Instagram, an account where people can submit photos and memories of people, no matter their age, race, nationality, gender or sexuality that have been lost to HIV/AIDS. There may be a post of a celebrity such as Freddie Mercury, but more often than not the posts are of everyday people; cooks, chefs, students, activist etc. By reading the memories of people’s sons, daughters and lovers we are able to keep their memory and spirit alive.

The founder and curator of The AIDS Memorial Instagram (founded April 2016), Stuart, who prefers to remain anonymous agreed to featuring his work and recommended four contributors who had submitted memories to his page that I could reach out to and interview. Thank you Richard Jonas, John D’Amico, Amy Zeis and Mark Quigley for sharing your stories with us.


When did you discover The AIDS Memorial Instagram?

I had friends who followed The AIDS Memorial and told me how much was to be learned and remembered there, so I started following it. Now I read the stories every day. Some really move me, some echo my own experiences, some teach me something completely new. I try to respond. Hundreds of people have written to me based on the four men I memorialized and it meant so much. 



What made you want to submit? 

I originally wrote a short biography of the man I loved most, Alan Goebbel, to accompany a panel his mother made for the AIDS Quilt. 

I lengthened it and submitted it to The AIDS Memorial 20 years after he died. Then I used my memories of my old friends, Tom Mitchell, John Davis and of my best friends, Hank Purvis to write memorials of them. It has been wonderful for me to remember and feel them close — though very sad too, deepening my understanding of what I lost when they died. 

I think we have to remember that hard and horrible time — and the beauty, courage and grace sometimes found there. A whole generation doesn’t remember first-hand. We can’t let the world forget. 

What is one of your fondest memories of John?

I remember John always being a dreamer, a sweet and loving man to his children and to his friends. He had a sense of playfulness in him and it showed in his laughter and his affection. 




When did you discover The AIDS Memorial Instagram?

I’m not exactly sure when I first came across The AIDS Memorial account, but I think it was probably sometime in 2017.

What made you want to submit?

When I discovered the account on IG, I was moved not only by the tributes themselves but by the fact that, after all these years, those who suffered and died from AIDS related causes, many of whom were ostracized and treated as outcasts while sick, were finally being honored, regardless of gender, race or sexual preference. In 2015, on the anniversary of his death (July 30), I posted to my IG account a short tribute to my boyfriend Douglas who passed away from AIDS in 1985. And on World AIDS Day last year I posted another more detailed tribute to Douglas shortly after midnight on 12/1 and tagged The AIDS Memorial, hoping that Stuart would post it to his account. I’m not sure but I may also have sent Stuart a DM asking him to repost the tribute. And I remember waking up in the morning pleased to see not only that it had been reposted but had received at that point over 1000 “likes” and many heartfelt comments that moved me to tears.

My reason for posting was to tell Douglas’ story and honor his memory. Also to share the heartbreak AIDS brought into the lives of so many, including my own. On the anniversary of Douglas’ death this year, I finally read, after 33 years, the journal I had kept for five months in 1985, between his diagnosis on Valentine’s Day until he was admitted to the hospital for the last time in early July of that same year. It’s a harrowing read as it’s all there in print, starting with the disbelief at the diagnosis, the denial, thinking and hoping perhaps Douglas would be the one to survive, convincing ourselves that every slight improvement was a sign that he was getting better. The pain and distress that comes with watching the man you love suffer and disappear before your eyes, morph from being fit and healthy by all appearances to a skeleton who could barely walk without assistance in a matter of months. The anger that comes with feeling out of control and helpless, wanting so desperately to make Douglas well and failing at it. And finally the fear that comes with knowing that I too was infected with HIV and would most likely soon suffer the same fate as Douglas.



The photo you submitted to The AIDS Memorial, of Douglas rowing a boat, can you tell me about that memory?

The photo of Douglas in the rowboat that accompanies my tribute was taken by his older brother Mark, who dabbled in photography. Douglas and Mark lived together when we met and their sister Laura lived in an apartment building just across the street on the Upper Westside of NYC. The three of them had a great relationship, although Douglas was especially close with Laura. The photo was taken in the boat pond in Central Park.

To be perfectly honest, I don’t think I was there when it was taken because I had a full time job whereas at the time, Douglas and Mark were both waiters and had days off during the week. As you can tell by the photo, Douglas was a strikingly handsome man, to such an extent that folks often asked if he was a model, which he wasn’t.

But since so many people thought he was, we thought, well, why not get a portfolio of professional quality photos together and shop them around to some of the modeling agencies in NYC. It would cost practically nothing with Mark taking the pics and the worst that could happen is that Douglas was not hired by any of the agencies. For the purposes of the portfolio, Mark shot Douglas not only in the boat pond but also on the roof of the Beacon Hotel on West 75th Street, the building in which they were living at the time. As a rule, the roof was a not accessible to the tenants of the building. Except for Douglas and Mark, who had charmed the super into letting them plant a garden there.

Mark took some gorgeous shots and the best of them, including the boat pond photo, were compiled into a portfolio and shown to the modeling agencies that Douglas visited. After all was said and done, if I remember correctly, the consensus was that although Douglas had the face for modeling, he wasn’t quite tall enough for the runway. I still have the portfolio of pics and will cherish it forever.

“I think we have to remember that hard and horrible time — and the beauty, courage and grace sometimes found there. A whole generation doesn’t remember first-hand. We can’t let the world forget.”


When did you discover The Aids Memorial Instagram?

I’m not sure how I found The AIDS Memorial Instagram. I believe I was searching Instagram for things related to HIV/AIDS and found it. I read story after story, thinking how scary it must have been to have been diagnosed in the early years. My heart ached for them and their loved ones. A part of me became angry at Mason for not taking his medication. It was so confusing. He did tell me that the man he was with recommended vitamins instead of his medicine. I don’t know if it was that or if the PML affected his decision making. Mason living in Las Vegas Vegas and me living in KY didn’t help.

What made you want to submit?

I wanted to submit his story because I’m terrified he’ll be forgotten. My job as his mother is to keep his memory alive, telling his story was a wonderful way to help me keep him alive. I had to have him cremated because of expenses and couldn’t afford a proper funeral. His dad and I divorced when Mason was 8.

I have a tree planted for him at a local cemetery but it’s not the same as someplace with a headstone so it’s very important for me to tell his story. Also, I’d like for people to learn from him and to know just how strong he is. 



What was the one thing that always made Mason laugh?

One thing that always made Mason laugh was ticking his feet. He couldn’t take it! Oh, he had the most infectious laugh. It was hard not to laugh when you heard him laugh! 

My son made a mistake by stopping his medication, but at the end he decided that he wanted to fight. By that time it was too late. But he fought. I had to look him in the eyes and pretend everything was ok while I made the decision to remove him from life support. But he fought. As the nurse was giving him something to help him fall asleep before they removed life support (which he didn’t know) he looked at her and mouthed the words, “how are you?”.

My baby, my only child was a fighter and I’ll never let him be forgotten. Thank you so much for your time and your interest. 


When did you discover The Aids Memorial Instagram?

My memory of when I first discovered The Aids Memorial Instagram is a bit fuzzy.  I know I had been reading it regularly for 3 months ? 6months? Longer? Before I sent my first post in December 2016. Looking back at the archive, I see that I commented on a post about a friend Gil Quadros on 8/4/16 – who was a poet and a writer.  

“Gil was an amazing guy.  Like a fierce hot wind that warms an already hot night.”

 And in December 2016, I sent my first memory – of my friend #DarrylBrantley – (you can search for it on the site).  

What made you want to submit?

I remember in the early days of reading the site, I would regularly feel this incredible surge of hope and sadness. Sadness at the tremendous amount of loss of so many young, young, young people. People who seem even younger now than they did then. And hope about the openness with which contributors share their stories, their rage, their loss, their love. So many memories of the late 80‘s and 90’s, for me, living in West Hollywood, gather themselves around the unexplained and the incomplete.  People regularly disappeared into a general category of “Died of AIDS” and yes, of course they were so much more for me and for so many others, but nonetheless they were gone and the explanation was the story. 

Stuart has broken that open, not just for a new generation, but for those of us that lived daily life in the time of AIDS.  I love him for his vision. I have written four memories of the more than 75 people I have known that have died of AIDS. 

Darryl Brantley, Steve Small, Tony Vito Anthony Gramaglia and Patrick Snyder.



If you were able to take Steve to Las Vegas today, where would you take him and why?

My story about Steve Small took a turn I never expected when Stuart reposted the story –  his niece (@chrissy_ob) saw his picture and read my story about him quite by accident on the site and shared the post with her family. She wrote: “I started following this page after @andersoncooper posted about it in the hope that I would one day see a story about my Uncle Steve. This made my year. ❤️”

She also shared [the post] with her family including Steve’s sister @msmichelebrown, “Thank you for describing my brother so lovingly! We miss him and every artist taken by AIDS. He was my best friend.” I wrote back: @chrissy_ob, “1985/1986 was a long time ago and I can still remember moments and feelings and the way he showed up fully and how he was patient, caring and fun. 
I remember how super smart he was and his love for music and poetry and how he would write letters to poets because he believed in this crazy simple idea that people should connect. And did. And he did. 
I’ve always loved the singularity of this photo and how time plays a character and your Uncle Steve is the star and the background lights are the timelessness of memory. It’s the only picture I have of him and it holds a complete story. 
For me, AIDS has a way of distilling lives into an elixir that can be potent, mesmerizing and heartbreaking – and this site has delivered many people I’ve known, many years ago right into my handheld and into my heart – and I’ve tried to bring some of that laser hot light into the memories I’ve shared including those of your Uncle Steve. Your family lost a really great guy. As I wrote above…he was a regular nice guy (and a good kisser).

The idea that I could take Steve somewhere is dwarfed by the reality that I cannot. That time, that innocence, this world no longer contains that place. The world is no longer flat. But I welcome his memory and the memories of all the people I’ve known and meet here on The Aids Memorial Instagram site. They all spend a little time in the world I’m living in as I look back into the one they left.

“On the anniversary of Douglas’ death this year, I finally read, after 33 years, the journal I had kept for five months in 1985, between his diagnosis on Valentine’s Day until he was admitted to the hospital for the last time in early July of that same year.”

Showing 3 comments
  • Mark

    I’m moved and honored that my tribute to Douglas was included in this beautiful piece. A big thank you to Stuart and Alexandria.

  • Amy

    Thank you for choosing to share Mason’s story. I read each contribution and my heart aches. I wish I had known everyone. Sending love. Mason’s mom, Amy

    • Alexandria

      Thank you Amy for sharing Mason with us and letting us being able to see a small glimpse of the wonderful person he was.
      Thank you <3

Leave a Comment

Start typing and press Enter to search