The following is s transcript of the conversation between Karl Schmid and Ron Sese.

KARL
How one post on Instagram literally changed my life.

Welcome to +Talk on +Life where we’re all about turning positive into a plus. And my guest today is Ron Sese. He is from the Instagram account, The AIDS Memorial, and talk about turning positive into a plus. This site is phenomenal. They have been around since 2016, they’ve got over 213,000 followers, and on March 23rd, 2018, I shared my HIV truth via The AIDS Memorial and it changed my life. Ron, good to see you. Thanks for joining me.

RON
Yeah absolutely. It’s lovely to see you as well.

KARL
I love everything about this Instagram account and I talk about it whenever I can and it really did, it played a huge role in me sharing my HIV truth. Because I bought the t-shirt. Not the one you’re wearing, but the original t-shirt. And I never had a story of a relative or a friend or a family friend who passed away. So I wanted to contribute and the only way I could figure out how to do that was to post a picture of myself wearing the t-shirt and tell my story, and I know a lot of people do that. It’s remarkable, the response. How did this account get started?

RON
Thank you for all the kind words. And we’re all very proud at The AIDS Memorial for the impact of the page itself. So it’s always really lovely to hear that kind of feedback. The page itself was born out of this idea of, well, the catch phrase is what is remembered lives. We always aim to keep the legacies of those lost during the AIDS crisis alive by allowing people to share stories about these individuals. And the really, truly, this was just sort of like a side hobby project for the founders of the project steward, but eventually became much bigger than that. People started submitting their own stories and then you could track relationships being built in the comments section. So, people would see a story get posted and then someone would say, “Oh I used to work with this person.” “Oh, I was a long time family friend of this person.” And you would see all of the lives that each individual shared about, that every life that they would touch. And then those people would connect to sort of share in mourning, which was really truly what I think the power of the page is.

KARL
It’s interesting because, so many people in this day and age think, well, HIV AIDS we’re kind of it’s not really important anymore. We’ve got antiretrovirals and people are living long, healthy lives. And a lot of people also don’t wanna be reminded of HIV and AIDS. They don’t wanna be reminded of this time but this page sort of flies in the face of that and it’s broken through it. Why do you think that is?

RON
Because I think everyone understands the value of a legacy. Really and truly, I think that’s fundamental to the human spirit. And I think that that’s, well, mortality is something that every person can connect to in some way. Even if you have no experience with death in the first hand, right? Like if you think about the fear of mortality I also zero converted and came out in large part due to the age stories I would hear because I think it’s important that we talk about these. One of my initial fears when I came out, I came out prior to the current one a day options in the marketplace. And so treatment was actually really scary and sort of uncertain. And so I was untreated, newly diagnosed, very afraid of what could have happened down the line for my future. And my first thought was what happens if I don’t make it to my 25th birthday? What happens if I don’t make it to my 30th? How will anyone know I was here? And so The AIDS Memorial provides that solution. The AIDS Memorial gives folks who have been fighting the good fight so to speak an opportunity to be remembered by many others. And that is really the value of the page, the imprint it leaves allows other people to connect with. Maybe someone they’ve never met but whose story really resonates.

KARL
Yeah, why Instagram and now Facebook as well. Why these platforms?

RON
I mean they’re the platforms most people are actively using. Also, I mean, social media prior to Instagram really wasn’t photo focused necessarily. Facebook did have early options to like upload albums but like the Instagram was the first visual platform. And so it was, it’s also a platform that was that is and was wildly popular. So there’s a ton of access people across the world connect on Instagram every day. And so it was a no brainer it made the most sense for what the mission of this page was. And Facebook is only an extension of the impact of the Instagram page.

KARL
Yeah, and what’s the reaction you get from people who post and share their stories, whether it’s a story like mine of sort of talking about your own HIV journey and coming to terms with your diagnosis or the stories of them posting about family and friends and people that they love. What kind of feedback do you get once these things are out there and being seen by as I said, over 213,000 people around the world.

RON
I think you’d be surprised by the outpouring of love. People really, truly that there are very few places on the internet that I think really like receive almost unanimous positive feedback. There is still negative feedback, but it’s much a much smaller ratio of negative to the positive. And so most of the feedback we get is can you post about this person or thank you so much for posting about this person, right?

KARL
It is remarkable. And the job that it’s doing in celebrating people’s lives but really also then fighting HIV stigma head on.

RON
The more HIV stories we share the more we can sort of undermine the myth that HIV is no longer prevalent because we have really manageable treatment options and it isn’t the death sentence it used to be. That’s true, it isn’t the death sentence it used to be, but until HIV and AIDS has been eradicated around the world it is an ongoing issue that we all need to take great care about. Having these conversations is so valuable because it allows more people to be aware. Maybe they know someone who’s HIV positive and they did not realize it. Maybe seeing these stories of HIV positive people or folks we lost through the AIDS pandemic. Maybe seeing people speaking about these feelings of taboo or like under representation will motivate them to come forward.

KARL
What I think it does such a great job of it humanizes this scary monster in the room. Because we are seeing beautiful memories of beautiful people and we are celebrating them. And we are not, it’s not just the frightening fear and doom and gloom and scary times of what that time was. And I think that’s really powerful. So what does the future hold for The AIDS Memorial do you think?

RON
Growth I hope, I mean, really truly we just wanna reach more people. We wanna share more stories and we wanna connect as many members of our community as we can. I think the magic in the platform of The AIDS Memorial is how much it platforms others to connect. It really is focused on its community.

KARL
Yeah, and speaking of connection, I mean you had two people who posted stories on December 1st World AIDS Day last year, and they just got married. I saw, and they met because of The AIDS Memorial

RON
Listen, our impact that we were so proud to see these sorts of unions and relationships forming from these small little platform this little engine that could. Really the success of this platform rests solely on the compassion of the community behind it.

KARL
Yeah, and compassion is a great way to describe it. Certainly the outpouring of compassion and support and love that I received back in 2018 when I posted my story and continued to. And to your point, people reaching out directly because they saw it and they could relate to it. If people wanna submit to The AIDS Memorial, how can they?

RON
I mean, feel free to reach out either by email or by social media platform. You can message the account directly. We try to make ourselves as accessible as possible. So if there is a desire to reach out feel free to click the button on the page or follow the email instructions on the account.

KARL
Well, Ron Sese from The AIDS Memorial, thank you so much for joining me and talking about this fantastic Instagram account that literally changed my life and is doing a lot to change many others, whether it be through sort of new experiences or healing, it’s phenomenal. The #whatisrememberedlives is so poignant as well. Ron, thank you so much for your time. That is gonna do it for this episode of +Talk. Thanks for watching. If you want more information about The AIDS Memorial or how to submit we’ll put it all up on our website, PLUSLIFEMEDIA.COM and you can follow us across social media platforms. We are @PLUSLIFEMEDIA.com until next time stay safe and remember what is remembered lives. See ya.