On December 1st — which was World AIDS Day — I was scrolling through Instagram and noticed Jim Parsons from The Big Bang Theory had posted about the Instagram account The AIDS Memorial, which shares stories and photos of people who have died from AIDS. I immediately followed the account, and spent any free time for the rest of the weekend reading as many tributes as I could stand before I began crying.
Because it’s become a disease that can be managed with medication to the point of non-detection, the severity of AIDS seems to have been forgotten. But this account puts thousands of very real faces on a disease that isn’t going anywhere anytime soon. And that’s why you should be following it too.
Since I was born in the mid ’80s, AIDS has literally been around my entire life. It’s almost impossible to talk about the decade without talking about the way the disease took hold of entire generation of men, women, and children.
Many of the tributes on The AIDS Memorial page feature gay men who died in the late ’80s and early ’90s. But there are also tributes to women and occasionally children who died as well. While there are some similarities between the stories of some men featured, you are forced to see them as individuals. They all belonged to someone; they were husbands, wives, lovers, friends, fathers, mothers. The people who took the time to write a memorial to them are the ones left behind, holding onto nothing but maybe a few photos and a mind full of memories.
If someone died in 1986 (the year I was born,) that means they’ve been gone for 32 years now. Sometimes that doesn’t seem like a long time at all, but if you’ve been missing someone you love for 32 years, it can feel like an eternity. Many of those memorialized didn’t even get to live to be 32 years old — they’ve been gone longer than they were here. As a person who feels like they didn’t hit the prime of their life until they turned 30, it breaks my heart to know that so many of these people never got to reach that point.
As of right now, The AIDS Memorial Instagram account has over 4,800 posts and over 75,000 followers. The account has existed since April of 2016 and is updated daily. It is run by a Scottish man named Stuart who generally remains in the background to give the tributes the attention they deserve.
“It’s still taboo to talk about AIDS, I thought maybe I could help change that,” he said in an interview with The Guardian in November 2018. He notes that Instagram has a far reach and that lends itself for creating a virtual history book that might not otherwise exist.
The AIDS Memorial account isn’t the only tribute to those lost to the disease, but the fact that it exists in the social media space means it’s targeting a whole new group of people who may not have the opportunity to share their stories or to learn just how devastating this disease really is.
“I want [people] to see the faces behind the statistics,” Stuart told Scary Mommy. “To acknowledge those who perished, who were disowned, and now seemingly forgotten to be remembered. They were here, they existed, and they mattered and still do matter.”
The toll the AIDS epidemic has taken was brought to light again with the death of former President George H. W. Bush, who was by no means an ally to those who suffered from AIDS, neither as Vice President to Reagan nor when he became President.
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🔻 . “This photograph is from a 1991 ACT UP protest in Portland, Oregon against President George H. Bush. . I am with my cohort from the Seattle chapter of ACT UP who drove down to join forces with other regional chapters against Bush’s campaign to get re-elected in 1992. . So many people — thousands — died during the four years of Bush’s administration (1988-1992). . Bush remained indifferent, and his cold heartless negligence, like former President Ronald Reagan’s, fueled the horror of the AIDS crisis during the initial critical years of its emergence. . When I heard last night that Bush had died, like Morales in “A Chorus Line” sings, “I felt nothing.” . All my feelings today are reserved for the various people — friends, lovers, strangers — who died horrible unnecessary deaths during those years and since. . We had no choice but to act up and fight AIDS, and so we did in all kinds of private and public ways, both in and out of the spotlight. . I, remember, too the activism and care that wasn’t photographed, that existed outside of the camera’s gaze, that had few if any witnesses, small intimate yet powerful exchanges of love and compassion. . These are the thousands and thousands points of light, so to speak, that guided us through those years. . These are the people and memories that live in my heart. Today, on World AIDS day, as always, I remember you.” — by David Roman @silverlakedogs . #whatisrememberedlives #theaidsmemorial #aidsmemorial #worldaidsday #worldaidsday2018
Even now, when we talk about those who have died, we talk about the famous people who died. People like actor Rock Hudson or actor Robert Reed (the dad from The Brady Bunch) or one of my personal favorites, Freddie Mercury. I had just gone to see Bohemian Rhapsody only days before learning about this page — the 27th anniversary of his death from AIDS had been the week before.
While The AIDS Memorial page does honor the more recognizable faces who died, if tributes are submitted, it provides a space to honor the “regular” people who also lost their lives. It reminds us that their lives mattered just as much, and there are still people who remember them.
“Since learning the truth, I’ve felt it’s my responsibility to tell his story to remove the stigma and shame my family felt for so long,” reads a post by Cara Doidge Kilgore paying tribute to her father. She didn’t learn he was gay and died of AIDS until 16 years after he died.
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🔻 . “My dad's name was Duane Doidge. He was born and raised in Lubbock, Texas, later moving to California to attend Pepperdine University and then Tennessee for graduate school, where he lived until he died. . He was a social worker and family therapist, working for Catholic Charities, as the Director of Mental Health for the state of TN, and later a shelter for teens. . He loved to travel and play the piano and meet new people. He also loved playing games. He was known for pulling out the dictionary to argue about words when playing Scrabble and cheating at bridge with his co-workers. . Dad was sick on and off for much of my childhood with illnesses no one yet understood and eventually was diagnosed with AIDS in 1989. . I remember I was not allowed to go to his hospital room to see him and the one time he was allowed to come down to the lobby to see me he wore a mask and was so frail. He was shivering under his robe. In early 1990, he came home with hospice care and died in June 1990 at the age of 44. I was 8. . I was with my mom at her school that day and helped to answer the phones so I was the one who answered the phone when the nurse called and asked for my mom. I sat there in silence while I waited for my mom to get off the phone and tell me what I already knew. . My parents told me Dad had leukemia and that's what the doctors told our insurance company because my parents were worried they would lose their insurance. . I didn't learn the truth about my dad's death until 16 years later. It was only later that I learned of the small circle of close friends who knew the truth of his illness and knew he was gay. . Since learning the truth, I've felt it's my responsibility to tell his story to remove the stigma and shame my family felt for so long. . I remember most his love for reading to me, his joy of being silly, the smell of his cologne, and his scratchy mustache. . I am deeply proud to be his daughter and will carry his story and his memory with me always.” — by Cara Doidge Kilgore @caradoidge . #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids
According to the most recent United Nations statistics on HIV and AIDS, globally approximately 77 million people have become infected with HIV since the start of the epidemic. Approximately 35 million people have died since the start of the epidemic. In 2017, 940,000 people died from AIDS-related illnesses.
As we can see from the numbers, AIDS isn’t going anywhere anytime soon. It claims lives daily, leaving loved ones behind to pick up the pieces and forever mourn their loss. The AIDS Memorial Instagram page isn’t a sad account of those who died, but rather a beautiful account of lives lived.