Heartbreaking Instagram account commemorates the generation lost to AIDS

With advances in anti-retroviral treatment, many people diagnosed with HIV today will live lives just as long as those who don’t have the virus.

In some cases, perhaps even longer because they have regular check-ups that can identify health problems early.

Although great stigma persists, ‘AIDS’ as a word has fallen from our language in favor of ‘HIV-related illness’ or ‘complications relating to HIV’.

However, it hasn’t always been this way.

As the years advance, it can be all too easy to forget the many thousands of people who have been killed by HIV.

An Instagram profile looking to honor the memory of generations of people lost to the virus is The AIDS Memorial (@theaidsmemorial).

The idea is both simple and beautiful: Images of people, both famous and non-famous, lost to AIDS, with a few lines about their lives and story.

Many of them are heartbreaking. This week it carried the story of partners Ross Laycock and Felix Gonzalez Torres.

Laycock died of AIDS in 1991. In his memory, artist boyfriend Torres made an installation work – a giant, 175-lbs pile of candy in a gallery. Visitors were invited to help themselves to a piece of candy, ‘the diminishing amount parallels Ross’s weight loss and suffering prior to his death.’

Torres himself went on to die from AIDS also in 1996.

‘His parents accused me of killing their son’

Then there’s this submission by Anthony Tucker: ‘This was my partner Mark and I at my grandparents house. We use to go down there every weekend, he really enjoyed them as much as they did him.

‘This picture was taken in 1988 in May a month before we moved to #SanFrancisco. I lost him to #AIDS in 1990. This is all I left of him. Before we had any legal rights or married to him the nurse’s use to sneek me into #DaviesMedicalCenter to be with him.

‘I lost him on Nov 7th 1990 at 2:35 am, he was in my arms. His parents, who had been estranged from for many yrs came down from #Washington and took everything and accused me of killing their son.’

“This was my partner Mark and I at my grandparents house. We use to go down there every weekend, he really enjoyed them as much as they did him. This picture was taken in 1988 in May a month before we moved to #SanFrancisco. I lost him to #AIDS in 1990. This is all I left of him. Before we had any legal rights or married to him the nurse’s use to sneek me into #DaviesMedicalCenter to be with him. I lost him on Nov 7th 1990 at 2:35 am, he was in my arms. His parent’s, who had been estranged from for many yrs came down from #Washington and took everything and accused me of killing their son. His family were #Greekorthodox and didn’t believe In homosexuality, but I was fortunate to have a family that cared and they loved Mark and he made me happy. In honor of Mark I made a quilt and took it down to the #NamesProject. Just recently I found out they were bringing the quilts to Palm springs and I called and e-mailed, but I was told it was too late. Last night I was out with friends and man approached me and asked me “are you Anthony Tucker?” I said yes, apparently he had asked around for me. He asked can we go outside and talk, we did, his name was George and he was from the Names Project. He apologized to me that they weren’t able to get it here in time, I cried so hard, it was like reliving it all over again but it was good to know that they tried to make the effort to bring it here, it just showed me that there are a few good people left in this world. He told me that their doing a display in LA soon and it will be there. And I will be too.. ” – by Anthony Tucker #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 5, 2017 at 3:39pm PST

The profile was launched last March by Stuart, a 42-year-old in Scotland. He doesn’t want to reveal his whole name, telling GSN, ‘I’d rather just stay anonymous to be honest, because I would like focus on the aim of Instagram page and the people it features.’

‘The history of the AIDS epidemic is so interesting to me. History fascinates me: gay history and the emergence of AIDS in the 1980S and those who died and seemed in my opinion to have been forgotten.

‘No one seemed in my opinion to speak about all those who had passed. Older people didn’t want to be reminded as it was enough to live through it, and the younger generation didn’t want to know about it. Period! Or so I thought.

‘The Instagram page has proved me wrong which is marvelous. I thought Instagram was a perfect way to document the lives of those who had died. I just want more people to hear the stories and remember.’

At first, he highlighted people in the public eye. Recent well-known names to feature include David Cole of C&C Music Factory, Tina Chow and singer Klaus Nomi.

#DavidCole (June 3, 1962 – January 24, 1995) was an American #songwriter and #recordproducer. Cole initially worked as a session musician for #FleetwoodMac and #JanetJackson but was best known as was one half of the dance-music duo #CCMusicFactory, which he founded with musical partner #RobertClivillés. Clivillés and Cole also produced various hits for other artists such as #MariahCarey, #ArethaFranklin, #JamesBrown, #LisaLisaandCultJam, #DeborahCooper, and many others. Cole won a Grammy for the soundtrack for the film #TheBodyguard which starred #KevinCostner and #WhitneyHouston. After Cole’s death in 1995, Clivillés continued to keep C+C Music Factory going through his own production work. Cole died at #LenoxHillHospital in #Manhattan on January 24, 1995 due to complications from spinal meningitis brought on by #AIDS aged 32. He was buried at #EastRidgelawn Cemetery in #Clifton, #NewJersey. The song #OneSweetDay by #MariahCarey, featuring #BoyzIIMen, was written in memory of #Cole. #whatisrememberedlives #theaidsmemorial #aidsmemorial #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 24, 2017 at 1:47pm PST

Also included are campaigners and those driven to activism by the emergence of the new epidemic. Others decided to take their destiny into their own hands rather than face the inevitable wasting away that AIDS caused before effective treatment became available.

#CarlWittman (February 23, 1943 – January 22, 1986) was a member of the national council of Students for a Democratic Society (#SDS) and later an activist for #LGBTrights. He co-authored #AnInterracialMovementofthePoor? (1963) with #Tom Hayde and wrote #AGayManifesto (1970). Born in #Hackensack, Wittman was a “red diaper baby” of #Communist parents. In 1960, he entered #SwarthmoreCollege #Pennsylvania, where he got involved in student activism. Before long, though, Wittman grew disillusioned with the homophobia and machismo of the New Left. He later recalled Hayden announcing that there would be no #homosexuality (or #marijuana) among those working with the #Newark ERAP, leaving Wittman “stunned and terrified.” Wittman ended his association with #SDS in 1966, the same year he married #MimiFeingold, a friend from college. n 1967, Wittman and Feingold moved to #SanFrancisco, where they lived in a commune of antidraft activists. The following year, he began coming out to friends, and the couple drifted apart (they separated in 1969). As Wittman immersed himself in the city’s #Gayscene and psychedelic revolution, his previously separate personal and political lives began to come together. Before turning in his draft card at the #Oakland Induction Center in October 1968, he agonized over whether to declare his sexuality, concerned that accepting a deferment due to homosexuality would look like a cop-out or an abandonment of fellow resisters. Wittman became involved in #Gayrights #activism at a time when older homophiles and younger #Gayliberationists were clashing over whether to assimilate into mainstream society or to radically oppose it. In his manifesto, Wittman called on #Gaymen – he said he couldn’t speak to the experience of #Lesbians – to come out, “stop mimicking straights,” and “stop censoring ourselves.” When he himself became ill with #AIDS in the mid-1980s, Wittman declined hospital treatment; he committed suicide by lethal drug overdose at home among his loved ones on Jan. 22, 1986. #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 22, 2017 at 9:52am PST

“Remembering #BARRYBERNAL……….Barry was a true “TRIPLE THREAT” and I had the pleasure of meeting him and watched him perform in the gypsy run of #THEGOODBYEGIRL as well as the opening night of #MISSSAIGON, in #STARLIGHTEXPRESS i saw him play the part of the #REDCABOOSE (which was a show the likes of #BROADWAY had never seen before),and also CATS. Barry was such a talent with such an impressive résumé. He died at the young age of 31 in 1994. Just IMAGINE what could have been…” – by Scott Fowler @scottfowler1967 #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 19, 2017 at 4:46pm PST

“This is throwback photo of a special baby (Zora) who died from complications from this disease. Circa 1996 I was a regular volunteer at THE FAITH HOME specializing in pediatric #HIV care for minority children. Zora was a special baby in so many ways. The illness was debilitating because of her constant and numerous IVs.After meeting her for the first time I pulled my car over on the access road & cried. Why? Because I knew she would never enjoy many of life’s simple pleasures that we take for granted. I LOVED this baby and she LOVED me. All she wanted me to do was to hold her & sing to her. She perked up anytime I was close by. Baby Zora left an indelible impression on my life. She is Heaven shining bright and radiant with happiness. We still have a long way to go before finding a cure….until then the best remedy with coping together is LOVE” – by Craig Christopher Williams #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 18, 2017 at 2:27pm PST

As time has gone on, Stuart says he has been touched and humbled by the number of people contacting him with photos and stories of loved ones.

Not everyone featured has died. Some postings honor long-term survivors, such as John Hanning, who was diagnosed 22 years ago.

“Twenty two years ago a doctor informed me I might have six months to live and that i needed to decide what I wanted to happen to my remains. i just looked at her and didn’t say a word, but in my head I thought “fuck you”. It was tough – every part of my body ached and all I wanted to do was stay in bed. Each morning when I woke up I could see the sunlight coming through the window and it was a reminder that I’d made it another day and that I wanted to live” – by John Hanning @johnhanning #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids #isurvivedaids

A post shared by THE A I D S M E M O R I A L (@the_aids_memorial) on Jan 17, 2017 at 9:39am PST

#MichaelStaniforth (15 Dec 1942 – 31 Jul 1987) born in #SellyOak #Birmingham, was an English stage actor. Staniforth who was openly #gay died of #AIDS aged 44. . Staniforth’s father was a sergeant in the @britisharmy and his childhood was spent with his family in Germany, Egypt and Libya. He emigrated to Australia at the age of 21 landed a role in South Pacific at the Menzie Theatre Restaurant in #Sydney, where for the next few years he performed in a further 12 musicals. In 1969, hereturned to #England and appeared in the West End in ‘Hair’ @shaftesbury_theatre and in #TwoGentlemenOfVerona and #WinnieThePooh @phoenixtheatrelondon. In 1977, he played the role of Paul in the original British cast of #AChorusLine, returning to the same venue (#TheatreRoyal, #DruryLane) three years later in #Sondheim’s #SweeneyTodd. . Staniforth’s was best-known for his role as the jester Timothy Claypole in the @bbc children’s tv comedy series #Rentaghost. Staniforth played #TimothyClaypole from 1976 until 1984. Staniforth also composed, played and sang the Rentaghost theme music. In 1984, Staniforth starred in the original line-up in the @andrewlloydwebber stage musical #StarlightExpress. . #whatisrememberedlives #theaidsmemorial #aidsmemorial #lgbthistory ᴛʜᴇᴀɪᴅsᴍᴇᴍᴏʀɪᴀʟ@ʏᴀʜᴏᴏ.ᴄᴏᴍ

A post shared by THE A I D S M E M O R I A L (@the_aids_memorial) on Jul 31, 2017 at 10:09am PDT

“Here’s to our mom Ariel! Elizabeth Glaser, adventure extraordinaire, fisherwoman, ski bum, tequila lover, beach bum, advocate, blueberry hunter, scuba diver, snorkel monger, smile addict, table top dance expert, an amazing human, a beautiful woman and the best mother I could ever wish for. Mom, you gave me my radical genes and my compass that never allows me to conform. You showed me the meaning of courage, and taught me that life isn’t worth living without fun. You provided life, love and my first tastes of tequila as a grom and on this day we will cheers to you. Love you mama!!” – by @thejakeglaser . #beachlife #california #mothersday #mom #mother #egpaf #family #sunday #celebrate #hiv #aids #change #fun #extreme #love #adventure #woman #strong #radical #picoftheday #photooftheday

A post shared by THE A I D S M E M O R I A L (@the_aids_memorial) on Jul 24, 2017 at 3:27pm PDT

The profile demonstrates that, as a virus, HIV doesn’t discriminate – but inevitably, many young men – many gay – feature among the roll call of names.

“In preperation of a move, I’ve been sorting through boxes not touched for decades, Yesterday I discovered old images and negatives from my theater days in #Ohio. This one was a punch in the gut – #MichaelBertin. He’s no longer with us, a victim of the first wave of #AIDS in the 80’s. He was a funny, wonderful guy and a talented actor. RIP Michael” – by Cherie Siebert #theaidsmemorial #whatisrememberedlives #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 13, 2017 at 4:36pm PST

#CraigGadson was born on January 15, 1961. He died of #AIDS on May 19, 1996 at 35 years old ▫ “My name is #RosettaDuBoisGadson. I am an ordained minister of the #AfricanMethodistEpiscopalChurch. I am also a mother who has lost a child to AIDS. On May 30, 1994, my son Craig was rushed to #BethIsraelHospital in New York City. When I spoke to him that night on the phone he told me not to worry, that it was just a parasite — cryptosporidium — that he had probably gotten when he was on his last trip to Mexico. . . . It wasn’t until July 5th that Craig took my hand and told me that he had something he wanted to tell me himself because we had never kept anything from each other. . . . He told me he was positive. He discovered it in 1990 when he applied for insurance, but he told no one. I grieved then and I grieve now for the isolation my son endured. I needed to know why, WHY couldn’t he tell me? So I asked and he answered, “I knew that you, my mother, my best friend, Rosetta, would be there for me, but I didn’t know if Reverend Rosetta DuBois-Gadson would be. . . .” AIDS was, and still continues to be, so abhorrent to many church leaders and members that they turn their backs on it. And I just learned that my own son feared that this part of me would do the same! There came a revelation that I can only describe as divine. I was filled with righteous indignation and I could feel the strength building in me. My rage had to be transformed into action. All fear had to leave me because I was being launched into a new ministry that I never would have imagined” Craig died two-and-a-half years later. #RosettaGadson has kept her promise to work actively as a pastor and AIDS educator and is committed to do so until, in her words, “The African American community can show the world that we are not afraid to speak, not afraid to love all our children.” #whatisrememberedlives #theaidsmemorial #aidsmemorial #neverforget #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Jan 22, 2017 at 6:07am PST

‘It wasn’t my intention to have a mass following on Instagram,’ says Stuart. ‘It’s not like following Kim Kardashian or any of the Jenners. The AIDS Memorial is not fluffy!

‘I understand it is not the easiest subject matter to follow daily. So it was a lovely surprise to see the followers steadily grow. The AIDS Memorial gives comfort to those that have experienced loss or have faced struggle when the chips have been down.

‘The positive feedback that I receive almost every day is so touching, uplifting and gratifying.’

‘People from all walks of life that never got the opportunity to realise their potential’

It’s actually hard to read more than a few entries at a time. The emotions become overwhelming.

Does Stuart find it sometimes emotionally challenging?

‘The feed started off with tributes to people in the public eye: information gleaned from the internet about people or issues that interested me.

‘Gradually people made contact with me telling me their personal stories about their loved ones and their history: from lovers, mothers, fathers, sons, daughters nephews, nieces, lovers and friends etc. That’s when it really hit home. People from all walks of life that never got the opportunity to realise their potential.

‘Discovering each story is very emotional. I have cried reading them but I have laughed out loud too because through all the darkness, people share memories of the happier times – there is light.

‘However, The AIDS Memorial page is like a graveyard. It’s never going to be an easy visit but these people are heroes, and there isn’t enough said about them. Period.’

Some people may not want a daily reminded of death on their Instagram feed, but at the same time, it’s a reminder of how precious life is. And of the huge holes that these people left in the lives of others.

They were loved. They are still missed. And they are not forgotten.

“I was the youngest of three children. My big brothers watched over me and tried to protect me, as big brothers do. I truly loved and adored them. I named my oldest adopted son after my middle brother Robert. Robert was ever so happy when I entered this world as his little sister. He taught me much about life. How to laugh and of unconditional love and acceptance. Robert was the best at surprising others with well thought out spontaneous gifts, given for no occasion other than to validate another’s importance. He died when he was 40 years old. I miss Robert and not a day goes by that I don’t think of him. It hurts when a loved one has to leave when it seems to be way too soon. I know I’ll see Robert again one day in Heaven. In the interim, I have wonderful memories of Robert to cherish. This photo was taken in 1987ish, right after Robert was diagnosed with HIV/AIDS. He died a horrendous death” – by Cindy Varnell #whatisrememberedlives #neverforget #theaidsmemorial #endaids

A photo posted by The AIDS Memorial (@the_aids_memorial) on Dec 27, 2016 at 7:16am PST