Politics & Culture

This Instagram Account Is On a Mission To Honor Those We've Lost to AIDS

@TheAIDSMemorial chronicles stories of love, loss, and remembrance.

While June is widely considered as a month of celebration for the LGBTQIA+ community and its allies, for many it's a painful reminder of the loss or disease of a loved one. Though it began spreading decades before, AIDS tore through the United States in the 1980s and 90s and continued to wreck havoc throughout the world. According to the World Health Organization, over 70 million people have been affected by AIDS, roughly half of which have died. 

The AIDS Memorial is an Instagram account started by a man named Stuart (who prefers to leave out his last name) that showcases the images and personal stories of men and women who've died of AIDS. Although it's often thought of as a problem of the past, AIDS is still a very present risk. For this reason, Stuart wants to raise awareness about the epidemic, about those who've succumbed to it, and perhaps most importantly, to elevate those who are surviving it. 

How did you get the idea to start The AIDS Memorial?

I have always been fascinated by the lives of those who have sadly succumbed to AIDS – not just by the famous names that have been covered extensively in the media, but also the unknown names cut down before they could ever reach their potential. The secrecy, the guilt, the shame, the bravery and tragedy that surrounds the AIDS epidemic, all this recent history with so many gone but forgotten.

I wanted to instantly share the stories that I knew about but at the same time learn and uncover more about those whom I did not know about. Instagram seemed to me to be the perfect medium in which to achieve this mainly due to its accessibility and reach. History doesn’t record itself, and I feel a sense of duty to make that happen in some way.

What is your mission with this Instagram account, other than to raise awareness and remember those we've lost?

The mission of TAM is always going to be about remembering the fallen and raising awareness —  the stigma, neglect, homophobia and the hatred endured by those who perished and their loved ones. I could go on and on. What TAM has covered so far, over 4000 posts in, isn’t even the tip of the iceberg and never will be.

When I read comments left on TAM over and over again saying,  “Wow! I didn’t know that so many died” just proves how this significant period of time — and so recent — has been forgotten.

We should never allow the AIDS epidemic and the events leading up to it to be forgotten or for the truth misrepresented in the future, especially today in our current climate of “fake news.”

To hear the Reagans today, for example, being referred to as “good people who did their best” during the epidemic by those who should know better is totally unacceptable. It’s on par with Holocaust denialism. That administration and their inaction were responsible for thousands of deaths. We must never forget this, otherwise, history will repeat itself.

We must never be allowed to forget that those who were afflicted with AIDS, were abandoned and mistreated by family, friends and the medical establishment, ostracized like lepers and then suffering the further indignity of having their cause of death covered up because of fear and stigma. TAM mission is to keep on highlighting this injustice and the injustice people continue to face.

What has been the most rewarding - and also the most challenging - part of creating and running this account?

The most rewarding aspect is all the positive feedback I receive on a daily basis from those who have lost loved ones, the Long-Term Survivors and also the younger generation who tell me that they didn’t have any idea until they followed TAM the extent of the AIDS crisis and want to help in some way.

It can be challenging for me to read the stories every day for sure.  Following TAM is not a walk in the park, and it shouldn’t be, but just as I think I need to pull back, take a break from it all, a story of another amazing human being appears in my mailbox. I can’t, won’t take a break. TAM means just too much to so many people and to me.

Each photo is accompanied by a personal story or testament about the subject written by someone close to them - how did you assemble these stories?

TAM is more about collating memories. More anecdotal, less Wikipedia style posts — I’m not really bothered about exact dates etc. If you have them? Well, that’s a bonus. 

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.

Long-Term Survivors (LTS) are also featured on your page and their messages are often empowering and address the stigma associated with their illness. What is the importance of showcasing survivors?

TAM is just as important as a reminder to remember those who have passed as it is to those left behind. LTS educate and help break down any misconceptions about living with HIV. It’s vital that they're acknowledged. Coupled with the fact I find their insight so inspiring. They were on the front lines bravely fighting when there were no life-saving treatment options and are even still fighting to survive today.

LTS often tell me that TAM is a much-needed outlet for them. Growing older and living with HIV can prove difficult mentally, emotionally and financially. LTS are living with PTSD, low CD4 counts, high viral loads and illness. LTS & activist Sean McKenna, who I have featured on TAM on numerous occasions, talks about this a lot —  so much so he helped revive the Buddy Program at New York's GMHC (Gay Men's Health Crisis).

Your tagline is "what is remembered lives.” What was the inspiration behind the quote?

There are so many stories I have received that tell of those who, while dying of AIDS, were scared that they would be forgotten. This has stuck with me. AIDS is not a subject that anyone wants to be reminded of, but everyone leaves behind a legacy after they die. Leaving behind a legacy is important even if you have died of AIDS. Every time I post, I use the hashtag “What is Remembered Lives” to accompany all posts. To me, it evokes the comfort in knowing that those who succumbed to AIDS will not be erased from our memories. I want to TAM show the face of AIDS: those who perished, disowned, forgotten to be remembered.

Now that living with the disease is possible, how can we continue the fight against AIDS today?

It may be possible to live with HIV but that is only dependent on a number of things, especially if your white, male and if you live in America — you can afford it. It’s unbelievable in this day and age many still don’t have access to life-saving treatment because of their sociodemographic characteristics.

People still die of ignorance. AIDS is not over. There is still no cure. No one knows the long-term effects of antiretrovirals - we can’t afford to be complacent.

To fight AIDS, our community must get educated. It saddens me when I hear stories of HIV stigma perpetuating within our community especially on dating apps when terms such “clean” are commonly used. Stigma is a factor in why people don’t get tested for HIV and why many still die of AIDS. If more understand how HIV is and is not transmitted, then less will be more fearful of it.

It is also alarming to me that people still unaware of TASP (treatment as prevention) and PrEP (pre-exposure prophylaxis) or have no clue “Undetectable = Untransmittable” (also known as U=U) which are all important ways to end the HIV epidemic and for example why serodiscordant couples can exist and thrive.

It’s also important that the younger generation realizes 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 the selfie induced, Instagay, love-is-love narrative. But everything we have 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.

 

Want to submit a story about your loved one? Email your story to theaidsmemorial@yahoo.com with up to 10 photos and a message under 400 characters. 

Purchase The AIDS Memorial t-shirt in support of Housing Works here

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